The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Matt (16 yr) in phase 3
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Matt (16 yr) in phase 3 |
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robyno Member in Phase 3 
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Matts Success Story << is posted here Matt counts off the improvements Matt Baby file link Matt 14 yrs: 1 year on MP Oct 06 Interview with RobynO - Lyme, myoclonus ___________________ Dear Parents We wanted to post our son's story here so that we can get some feedback from parents who are possibly going through the same nightmare that we have been going through with our son over the past year. Matt is 12 years old. Matt's symptoms are: chronic headache (started about a year ago and has been constant since mid-Oct last year), Tourette-like tic (takes the form of a grunt or snort), a period of about an hour of blurred/double vision each day, usually in the morning (it goes away if he has a sleep), photophobia (he often takes himself to bed with the light off and the blinds closed), fatigue (he is always tired), he is unable to look at a TV or computer screen, and finds reading and writing just about impossible, he has trouble sleeping and can't lie flat.......that is about it. Except that most days he complains of feeling nauseated at some stage, and for the past month or two his voice has been sounding hoarse - we are also wondering if they may be part of his symptom list as well. Matt was diagnosed with a generalised anxiety disorder after a 2 week stint in hospital before Christmas. He has seen a psychologist every week since and even the psychologist agrees with us that the doctors must have missed something. One of his teachers came up with a match to Lyme disease when she googled his symptoms and we have been looking into that ever since. Our paediatrician and GP are not familiar with it so we have been pretty much working on our own. We remember that Matt was bitten by a tick on the NSW South Coast about 5-6 years ago, but he did not come out in a rash and we thought no more about it. We asked our GP to organise the vit D metabolite test, and Lyme serology and PCR. We haven’t received the results for the latter 2 tests yet (though the relevance of these tests to Aust Borrelia spp. is probably questionable), but this afternoon we received the results of the vit D metabolite test: 1,25-OH vitD: 22.3 pg/ml 25-OH vit D: 27.2 ng/ml Ratio= 0.82 The blood was drawn on 16 June and the test was done by Capital Pathology. The lab assured us that the serum was frozen for transport and storage. Up until about 24 May Matt had been taking a Pentavite multi-vitamin tablet each morning; these tablets each contain 2.5 micrograms of vitamin D3. We were surprised with the results but Meg thinks we should start the MP because Matt is so symptomatic. We are in the process of organising doctors, glasses etc. We are reading furiously but are still terrified that the MP might not be the answer and Matt still has something that nobody has managed to diagnose yet, so we will keep exploring all options. We really are sick with worry. We will keep you posted, Robyn and John New member Test results needs help 12yo first posts Matt starts Benicar 13 Sept 05 Matt starts Mino 8 Oct 05 Matt starts Modified Phase Two 2 Dec 05 Matt starts next step 23 Feb 06 Matt starts Phase Two 12 July 06 |
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Aussie Barb Research Team 
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Robyn, John and Matt, Welcome to the Parents Forum.. Thank you for posting.. we encourage Members to post regularly in their own thread here with questions and progress reports.. we are happy to assist in any way we can.. In the forum Side Topic Discussion Related to the Marshall Protocol you will also find information related to Lyme, Th1 and CWD bacteria. Give yourself some time to absorb all the information. If you have any questions about the MP not answered in the forums on this site or by doing a site search, let us know.. .................... I will post the main info sources here to help you.. PHASE 1 MARSHALL PROTOCOL How to Start the Marshall Protocol You can order the very informative DVDs 'Recovering from Chronic Disease' derived from Our Chicago Conference @ our AutoImmunity Research Website THE MARSHALL PROTOCOL Full Sitemap ESSENTIAL INFORMATION ABOUT THE MP (Required Reading) Phase one, D-tests, foods to avoid, avoiding sun/lights, Benicar, physician papers, NoIR sunglasses, tutorials and more. MP FAQs.... Easy Finder (Required Reading) Answers to over 50 Frequently Asked Questions-Herx, Antibiotics, Medications, Blood pressure, Light, Blood tests, phase two, statistics, recovery, Th1 diseases, etc. all also found at ALPHABETIZED INFORMATION SOURCE The ABC of MP ANNOUNCEMENTS AND NEWS Search Feature at the top of each page will take up to 6 words all best, Barb ... |
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hrts4me Member in Phase 2/3 
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Dearest Robyn and John, My heart goes out to you and Matt in all that you are going through. You see, I have been where you are now, as parents of two girls with Lyme disease, and a small grandson. As a matter of fact we have 7 seropositive for Borreliosis in our family, four generations, ranging from the young, middle aged, and elderly, including myself. We lived on a livestock ranch, in a hot bed of Lyme. The symptoms you mention are all very familiar. Our youngest who became ill at Matt's age, went through a series of neuropsychiatric diagnoses, too. Later we discovered it was the effects of Borreliosis. I, like Matt have low readings on my D testing---nonetheless the abx combinations used on the Marshall protocol are effective in eradicating the disease. It is very possible that the inflammation is perfused in the tissues, and doesn't show up in the serum (blood) testing. I was deficient in D, and its quite possible rapid conversion was taking place. (My readings, I tested twice, were much lower than Matt's). Then too, it is possible that in spite of the lab's claims that the samples were not handled correctly. The benefits of the Benicar in blocking the nasty cytokine symptoms , have been a godsend. Each morning prior to beginning the MP, I awoke with profound, intense nausea, malaise, and fatigue. It seldom rears its ugly head now. Fatigue, headaches, photophobia, tourette and seizure activity, lack of the ability to read and write, nor retain new knowledge or recall old, have also plagued my family. My daughter's experienced OCD, depression and anxiety. After Western Blots administrated by those who were not familiar with Borreliosis, we chose to see someone who was very familiar with the disease. I don't know if that is possible in Australia, but we can certainly find out. The labs that many doctors commonly use in their practices do not return positive results. The Elisa, has pretty much performed very poorly. Western Blots in most labs are unsatisfactory, too. For the diagnosis of Borreliosis one needs to see an LLMD (Lyme Literate Medical Doctor). Lyme is a clinical diagnosis, but certainly many test positive if the physician knows how to prepare the patient and where to send labs. Many times patients are tested with a Western Blot without first being primed with antibiotics. Since the patients immune system is not recognizing the infection, they produce no antibodies to the disease. (Not only that but inferior labs are used). Thus they receive negative test results. This happened many times in our cases. Once seen by an LLMD, we were "primed" with a short course of antibiotics (abx) the die off began, and our bodies began producing antibodies (thus a seropositive Western Blot test). The gold standard in Western Blot testing is Igenex. There is also testing available through Bowen Labs, it is not a test for antibodies, but instead detects the bacteria in the blood sample. We chose Igenex, a Western Blot, as the other physicians we must deal with value its results. Western Blots are common, and therefore held more weight for them. (Bowen Labs are very reliable though, they just have research designation, so far, but I have heard rumors that this will change, thank goodness.) Many LLMDs recommend high dose abx treatment, I tried this prior to the MP, and again, as at the onset of illness-- I was confined to bed for six months, ended up back in the same place. I simply could not and doubt I would ever be able to tolerate these high dose protocols, with my pathogen load. There is no controling the inevitable herxing from die off, unlike on the MP, where you can control it through abx and Benicar dosing and intervals. I found the MP, researched as you are doing, and thankfully my LLMD agreed to let me begin the MP. I am tolerating the low dose, pulsed abx, with the addition of Benicar, very well. I am now in Phase II, and have found such symptoms as nausea/malaise almost gone. Many others have been significantly reduced. BTW, you mentioned Matt's tick bite. EM, the rash which you mention doesn't show up in a huge percentage of cases. Only two of our seven developed a rash, only one was the typical "bullseye rash". I wanted to give you some hope  Your path won't be easy, as many do not believe in Chronic Late-Stage Disseminated Borreliosis in the conventional medical community. I and many others can assure you it is a very real and disabling disease. It is in the beginning stages of being recognized. You might find that visiting the ILADS web site will give you information about the disease from doctors who recognize and understand this illness. Dr. Marshall is working with these doctors.You may choose to bypass the LLMD appointments and testing, as some have, saving some money, time, and energy (especially for the patient). The important thing is getting Matt well, not having to jump through economic and politically motivated hoops, trying to convince a physician of the existence of this disease, as is so common. It may be that the staff here can recommend an MP doctor in your area. Your son can be well again. The good news is that the younger seem to recover much quicker, their immune systems seem to come back on line faster, and their young bodies simply can do a speedier job of attaining wellness. I have been told this by physicians, and it is evidenced in our home. They don't have a lifetime of accumulated pathogens in addition to borreliosis that so many of us "oldsters" have accumulated. Please give Matt my best. Tell him I have a daughter who became ill at 12. It seemed to her as if life would never be the same, again. She got so sick and tired of being sick and tired. We went through a long period of visiting doc after doc---even psychiatrists regularly at the pediatrician's insistance. She is now back to 80%, and still getting better and better. If you could have seen her two years ago, as compared to today, you would be astounded. As a parent, I know exactly what you are going through watching a child ill. My heart goes out to you. Press on, stand firm, and most of all know that Matt can be helped. Big hugs, hrts |
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robyno Member in Phase 3
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Dear hrts I have just read your message and had a cry - I don't know how to thank you enough for your message. I will read it to Matt. We are definitely pushing on and are determined to beat it. Thanks again, and we will keep you posted, Robyn (and John, when he reads your wonderful message!) |
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robyno Member in Phase 3
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We have just received the results of Matt's PCR tests: very weakly positive for Borrelia, positive for Chlamydia, weakly positive for "Universal bacteria", negative for Mycoplasma. So, there it is - both Borrelia and Chlamydia have been detected, so we have double trouble, but at least we know what the trouble is. I know the MP will treat both organisms (I am not sure which organism scares me most!) - but is there anything else we should be aware of? Has this diagnosis changed anything? We have the first of our doctor's appointments today and would really appreciate some feedback. Regards, Robyn and John |
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hrts4me Member in Phase 2/3
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Hi Robyn and John, You mention you have double trouble, but it's not at all uncommon for those with TH1 illnesses to have more than one species of bacteria. Probably many of the older patients, those who have been chronically ill for years, have gathered a whole smorgasbord of them. The good news is both Chlamydia and Borreliosis are targeted by the MP abxes, so these infections can be cleared up in Matt. You'll find, I believe as we did, that the young recouperate very nicely, as they don't have the years of accumulation and their young systems/bodies rebound and heal much quicker. Best wishes, hrts |
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robyno Member in Phase 3
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Thanks again, hrts - I wonder which symptom is the cause of which infection?? I guess it doesn't matter in the long run, but it is a bit confusing to think about! We had the first of our doctor’s appointments this week. The doctor is a Canberra GP who is also a naturopath and has a reputation in the Canberra community for picking up and treating what other doctors miss. To cut a long story short, we were very impressed. We had written up "case notes" for him and he seemed to take it all in and not poo-poo us. He thought we had a lot of the right tests done but has ordered a few more (a urine test and red cell fatty acids and a whole bunch more blood tests). He agreed that the PCR tests showed Chlamydia and Borrelia (we are seeing a microbiologist in Sydney on the 28th who seems to be the Lyme specialist) but he wants us to see the Sydney microbiologist and get all the results in before we decide how best to treat Matt. He did not dismiss the MP but just said that it is very controversial. He knows the Sydney microbiologist and is willing to work with him, so we were pleased with that. It seems obvious from what everybody at MP.com says that the MP is the best way to get rid of the infections so that is what we really want to try. We are very keen to talk to the Sydney microbiologist whom we know is familiar with the MP and has at least one patient on it. The Canberra doctor suggested that while we are waiting for test results etc that Matt should take magnesium and coenzyme Q10 just as soon as he has had his urine test, to try to ease his headache and tic. We started him on that last night (the poor little guy was hoping for instant relief – he’s finding it tough going having to wait on doctors when he thinks his Mum and Dad have it all figured!). Regards, Robyn and John |
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Tobi Member 
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Dear Robyn and John, What a relief for you to at last be on the right track. There is still a long road ahead of tests and suchlike, but perhaps the days of fruitless consultations with doctors who don't understand these illnesses are at an end. I understand that one has to be respectful of the points of view of experts who have experience with Lyme and other chronic illnesses. We've all done this and perservered often too long with treatments which are recommended but don't make us well. The Marshall Board is littered with the sad remains of those who survived these trreatments, but are not well. It has been suggested elsewhere on the board that patients ask their doctor for studies proving that the proposed treatment will be successful in treating the illness. If and when the doctor has difficulty producing these, one is on a better footing with regards to increasing pressure for the MP, if this is the way you want to go. Thinking of you all, and wish you well - Tobi |
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GeorgeinRollaMO Member in Phase 3 
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Dear Robyn, John and Matt, I wish that a young fellow like Matt could run and have lots of fun as he should at this time of life! I wanted to add to all of the good points already said, that the MP does work! In case that you have not already ready it, I have used the Bowen RIBb test to check on my progress. It looks for the antigen (bacteria) itself that causes borreliosis that leads into the Th1 inflammation. After much varied and strong antibiotics over a long time, my Bowen RIBb dilution ratio was at the highest, 128. After only eight months of the MP, my Bowen dilution ratio was only 32. And my Wilson's syndrome (low bodily temperature in the 97.X and even 96.X due to hormones being out of kilter) is now broken. My temperature is now 98.6 most of the time. Except for when I am herxing, it is erratic but in the range is 98.0 to 99.1. You might want to start a record soon of Matt's temperature to see if this might give you a less expensive way of knowing if Matt is making progress. You can do a search using Google for a description of Wilson's syndrome. Wishing Matt and you the best!  Dark Vader (aka, George) Last edited on Sat Jul 16th, 2005 10:48 by GeorgeinRollaMO |
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robyno Member in Phase 3
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Thanks for that, George - will start recording Matt's temperature. He seems hotter than normal to us, but it's a while since we measured his temperature. We have a few more results back that we should report: Matt has tested positive (titre= 256) for 4 different Rickettsia species (australis, honei, conorii, sibirica) and less positive (titre = 128) for another 4 species in Rickettsial serology (immunofluorescence). Must be a lot of cross reaction going on. Rickettsial group specific PCR assay was negative (we had this same result once before, when the Lyme PCR was done). So Matt has positive results of various descriptions with Borrelia, Chlamydia and now Rickettsia. We see the microbiologist in Sydney next week, so that should be very informative. Robyn (and John) |
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OzJen Member 
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Has your son been out of Australia? I have had enormous trouble with the medical profession insisting that there is no Lyme in Australia. They would refuse to test me if I said I had not been out of the country when I got sick. My Elisa test came back equivocal twice, and the Rickettsial antibody test was done by Dr Jadin in South Africa...this was dismissed with 'that is always positive for everyone, it only indicates past infection". I do know that I can fight this ignorance with a good presentation of some facts, but currently cannot waste energy on anything like that. If your son has not been out of the country, that would be powerful evidence that Lyme or a cross-reacting organism is to be found in Australian ticks, and may help many people. Would like to know the names of both your doctor and the Sydney microbiologist, maybe you could private message me. Ta, |
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robyno Member in Phase 3
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Dear Jen It is hard to believe that in this day and age we have to spend so much time fighting ignorance, isn't it? It makes me very cross. The microbiologist we are seeing this week is at Royal North Shore Hospital in Sydney. From what all the Aussies say he is the best one to see for Lyme at least, but I am sure he will be familiar with all CWD bacteria and the diseases they cause. I will post how we get on later in the week. He has at least one patient that I know of on the MP. Rick is a South Australian with a Rickettsial infection and he sings the praises of his doctors, so you might want to get in touch with him as to whom he saw. At least they would be a bit closer! Also Aussie Barb sent me a list of doctors familiar with the MP in NSW, so you might want to ask her for a similar list for WA. We went to Europe at the end of Sept last year, but Matt's symptoms started long before then and he had never been out of the country. We almost didn't go on our trip - another month and we would have definitely stayed at home. To say that there is no Lyme-like disease in Australia is ludicrous. Good luck, and please let me know how you get on. We are all together in fighting this ignorance! Regards, Robyn |
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robyno Member in Phase 3
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We are making progress! The doctor we saw in Sydney last week is happy for Matt to go on the MP - Matt was the one who eventually asked him straight out if he could go on the MP after we had spent about half an hour talking about symptoms and ticks! However, he would like to work with our Canberra doctor as he is close by, which seems fair enough. We also see a paediatric neurologist at the end of next week so we are hoping to get him on-board as well. Our Sydney doctor will send a serum sample to the US for Lyme PCR testing and is also checking for arbovirus infections. All sounds positive. Hopefully we will have our Benicar prescription in a couple of weeks. Then there is the wait while it comes from Germany........ Regards, Robyn |
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robyno Member in Phase 3
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Still no prescriptions yet......... The good news is that our Canberra doctor is willing to put Matt on the MP, but he wanted to talk to the Dr we saw in Sydney (seems to be the Aust Lyme specialist) first and work out doses, etc, before he writes the prescriptions. All that sounds great, but it is proving virtually impossible to get the Sydney doctor to find the time for a 10 min phone call! In the meantime we wait for our prescriptions, which is very frustrating! I am trying to get messages to our Canberra doctor (doctors don't seem to take phone calls for some reason!) not to wait on the Sydney doctor and contact Dr Marshall directly - will be calling his office in about 15 min to see how successful that has been. We thought we were there, but it seems that there is no easy step with this illness - we have to grind and push every inch of the way! Our visit to the Sydney paediatric neurologist was an absolute disaster. Suffice it to say that he was not even prepared to consider the possibility that Matt's illness could be in any way caused by an infectious agent, despite the test results that we put in front of him! He made some outrageous comments about Matt being in a rut and that if we lived in a war zone he would not have any of his symptoms as he would be too concerned with survival. There were lots more, but I will do us (and our blood pressure!) a favour and not put them in writing! We, the neurotic parents who were half Matt's problem, thanked him for his time and left his office, feeling very angry and somewhat devastated yet again. Just as well we are not relying on him for anything! But we do feel very concerned for his patients and will have to do something to combat his attitude, but right now we don't have any spare energy to work out what to do. Matt's NOIR glasses arrived last week, so that is a step forward. A friend also suggested that we tackle the lighting issue at home by putting dimmer switches on the main light switches. That way Matt can control the lighting himself. Has anyone tried that? We were hoping that the glasses would enable Matt to watch TV, but it didn't work. I think Matt has problems with the movement across the screen as well as the light, which is probably why it also hurts him to read and write. Well, that is where we are at for the moment. I will let everyone know when we have the prescriptions, and then the long-awaited Benicar! Regards, Robyn |
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robyno Member in Phase 3
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We have our Benicar prescription at last!! It took a while, but we now have our beloved prescription and I have already faxed it off to Germany. So I guess it is officially on the way. The thought of having an actual treatment on the way is mind-boggling. I know it is not going to be easy, but after what Matt has been through for over a year now it will be a piece of cake. Will let you all know when it arrives and how Matt goes. We are sure to have a million questions. Regards, Robyn |
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Dr Trevor Marshall Research Team 
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That is great news, Robyn |
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Tobi Member
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Hi Robyn, I'm delighted for you all that you can now put your energies into a treatment that makes sense to you. I'm sure many parents of young children will be following Matt's progress with interest. Go well, and let us know how he progresses. Tobi |
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BARNEY Moderator 
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Robyn, Cartwheels for Matt @@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@ At last, I am so happy for you as parents and Matt as the patient to have his Benicar scrip. Please keep us up to date on Matt's improvements. He will improve. HANG IN THERE MATT, WE WILL MAKE IT!!!! BARNEY |
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robyno Member in Phase 3
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Thanks to you all for your good wishes - it is so nice to know we are not in this alone! While we have calmed down somewhat while we wait for the Benicar to arrive from Germany, I thought I would take time to up-date everyone on how Matt has been for the last couple of months. He is (usually) managing to go to school for his three half days per week. He doesn’t join his classes (he can’t read or write or look at a computer screen) but goes to the Special Education Dept where he gets some one-on-one tuition or listens to audio books of the novels that his English class is studying. The school has been very supportive of all of us. I read to Matt every night, which we both really enjoy (I am getting rather good at censoring the text as we go – we are reading some great novels!). Matt seems to be getting more and more tired. He is cheerful enough, especially now that the Benicar is on the way, and loves to fantasize about what he will do first when he starts to feel better (I think kicking the footy with his brother is just slightly ahead of playing the playstation!). His headache doesn’t seem to be any worse, though it is certainly no better and he is constantly asking when the 6 hr is up so that he can have his paracetamol tablet. They don’t help much but they must help a bit. His Tourette-like tic is very frequent (sometimes every 5 sec when he is at his tiredest) but no harder (if anything they have softened and become more frequent over the past few months). The doctor we have found to treat Matt with the MP is a nutrition / environmental MD who has impressed us greatly with his thoroughness. He did lots of metabolic-type blood tests (Gliaden IgA / IgG, high sensitivity CRP, serum copper plasma zinc, B12 / Folate and RBC folate, homocysteine, lipids – fasting cholesterol TG HDL LDL, ANF, RBC fatty acids) and Organix (Organic Acids) urine test. The results were a bit scattered for some metabolites, which I guess would be expected for someone with Th1 inflammatory disease. Our Dr suggested that, while we are waiting to organise the MP, we should treat the various imbalances with various supplements and see if we could help alleviate his symptoms even a little bit. He has also put Matt on a gluten-free diet for 3 mo (because of slightly elevated Gliadin IgG titres), which is quite healthy as long as we watch for added vit D and folate in the gluten-free foods. So for the past three weeks Matt has taken: C Plus – 1x twice per day for 2 weeks, then 1 per day SAMe – 1 each morning 5-hydroxytryptophan – 1x twice per day for 2 weeks, then 1 per day Parachol – 1x twice per day EPA/DHA Plus – 1x three times per day (apparently this fish oil preparation has minimal vitamin D) B1 – 100 mg, 1x per day. We queried the omega 3 for the vitamin D problems so the Dr talked to the manufacturer of the preparations and found one with a minimum of vitamin D. He was very keen for Matt to try it so we agreed. We have been watching Matt like a hawk – at first we thought his energy levels were improving slightly (after a week he got out his guitar for the first time in ages and we were ecstatic), but it didn’t last long and he is as tired as ever. He has been up and down a bit over the last few months anyway, particularly with his energy levels (though the “up” is speaking very loosely), so that may be all we are seeing. Last week he only managed two half-days at school – that may be significant, but we are not sure. We’re in the process of light-proofing the house (blinds, light-dimmers, no fluoros). We’ll keep Matt home from school and inside all the time once the Benicar starts. Matt is getting used to (in fact likes) using his Noir glasses. We’ll do another vit D assay just before he starts. What else should we be doing/changing? I think that brings us up-to-date for now. We are all very excited that the Benicar is on the way, and are struggling to understand the biochemistry of vitamin D metabolism despite the fact that we both have degrees in biochemistry! Regards, Robyn |
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Dr Trevor Marshall Research Team
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UNDER NO CIRCUMSTANCES TAKE ANY FISH OIL PREPARATION. IT WILL SET BACK MATT'S POTENTIAL PROGRESS AND MAKE IT MORE PAINFUL TO START KILLING THE BUGS. IT MAY TAKE MONTHS TO CLEAR OUT OF MATT'S SYSTEM. I would be happy to talk with Doc, because I have seen this happen so often before. Trying to Band-Aid the metabolite shifts will not help recovery, and will often make the disease worse. That is why we have a zero-tolerance advice on supplements. They are almost always counter-productive. All the metabolites will come back into balance as you kill off the pathogens. ..Trevor.. ps: Vitamin C, Vitamin E and Beta Carotene (pro-Vit A) are all OK Last edited on Sun Sep 4th, 2005 15:07 by Dr Trevor Marshall |
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Aussie Barb Research Team
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Edit: Matt starts Benicar 13 Sept 05 see below>> Robyn, John, Matt, Thank you for posting.. I will post some Links to Information here for you & for you to give to your Dr. THE MARSHALL PROTOCOL is at the top left of your screen on each page and has the full sitemap to keep all the Information sources in easy reach at all times. Your Dr is welcome to join the PRIVATE SECTION FOR MEDICAL PROFESSIONALS and to call Dr Marshall. re Blood tests: Which diagnostic tests do I need? What do my lab tests mean? How often should I test D levels? What are the target numbers? re Diet: FOODS TO AVOID Vitamin D, folic acid, refined sugars, excess carbohydrates If you do not see the food you are questioning in this list, it does not contain Vitamin D. If you need further reassurance, you can do a google search and/or contact the manufacturer. FOOD TIPS Helpful hints & testimonials THE IMPORTANCE OF AVOIDING VITAMIN D & FOLIC ACID and refined sugar, excess carbohydrates Insulin Resistant Diet Modified Carb, Low Glycemic Index see also Side Topic Discussion Related to the Marshall Protocol Acceptable food choices Common foods allowed re Supplements: Why do I have to stop taking supplements? I thought all over-the-counter supplements were safe. Which ones should I be concerned about? Should I take vitamins? Why are so many doctors ordering Vitamin D supplementation? re Vitamin D: Hypervitaminosis-D Symptoms High 1,25-D Vitamin D Tutorial Calciferol and Calcitriol re any meds: see this link and the link within Should I stop taking any of my medications? There are Testimonials here: TESTIMONIALS to the Need for Avoiding Light Member's personal experiences THE IMPORTANCE OF AVOIDING INGESTED VITAMIN D Food tips & explanations & Testimonials MARSHALL PROTOCOL SUCCESS STORIES re Symptoms: Dr Marshall says: " .... the biggest issue, IMO, is trying to micromanage the healing process. If you are typical of the folks who come looking to the MP for relief, then you have a body which is very ill. It is systemically ill, there will be no part of it that has totally escaped damage. That's the problem with micromanaging - when you get too much data it becomes not easy to analyse what is happening. Healing takes place on a yearly scale, and testing should follow it in the same timeframe, IMO." The First and Constant Guide to the Marshall Protocol is the Phase One Doc.. Please check all precautions / instructions.. some have it printed to check with regularly. and it is important to follow it exactly as written for Safety and Efficacy of the treatment.. The aim is to achieve tolerable herxing by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D.. The BENICAR Information Post at the top of the Benicar Forum and reading some of the Progress Reports in the Benicar Forum may be helpful to you also. I can see you reading this to Matt.. and of course Dr Marshall has given you the beginning Benicar Information for Matt, for your Dr. When you can, please fill your signature line < see this link for further details to include Thank You .. Please let us know if we can help you in any way. all best, Barb ... |
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Margo Member in Phase 3 
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Robyn, I would be very worried about anything with even "minimal vitamin D" as it is likely to be way too much for someone with a Th1 disease. It is hard for someone who has not seen how helpful avoiding vitamin D foods and supplements to appreciate how even a little bit can be too much. Some people who were prescribed supplements containing vitamin D which they took for several years have found that it also takes a very long time (years even) for their blood levels of the vitamin D metabolites to decrease. I'm so glad for you all that you have the prescription for the Benicar. My daughter began using Benicar as part of the Marshall Protocol when she was 12 years old. (She is now 14, and has had significant improvements on the MP.) She adjusted to it very easily, and found it made a big difference. For example, her headaches immediately improved. It's good to realize that while some people do have trouble adjusting to Benicar, not everyone has that problem. Margo |
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Aussie Barb Research Team
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Robyn, John, Matt, There is additional Information here: CHILDREN & MP Information and Links see also Topic: School- questions and What precautions do I need to take when I am going out or when travelling away? In case you are needing the mino sooner and so you do not have to wait or go out for a Dr appointment.. it may be a good idea to have the Mino script as well, and a tablet splitter, and have an arrangement with your Dr re calling him when the time comes. Barb ... |
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robyno Member in Phase 3
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Thanks Trevor - that couldn't be clearer! I will forward your response to our doctor and urge him to talk to you (I think he was intending to get in touch with you early this week anyway). As of now we will take Matt off all the supplements except vitamin C. Thanks again, Robyn |
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robyno Member in Phase 3
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We have some great news - the Benicar arrived this week and, after a quick doctor's appointment yesterday, Matt started taking his Benicar (20 mg every 6 hr, as he weighs 40 kg, which is about half the weight of an average adult) at 6.00 pm yesterday!! So far he has only had 3 doses, so there is not much to report except that he still has the smile on his face that appeared when his Benicar showed up in the post!! I am now off to the Progress Reports / Updates forum to register Matt's progress. There are a lot of excited people at our place right now! Regards, Robyn |
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robyno Member in Phase 3
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Benicar Start date: 13 Sept at 6.00 pm Dose: 20 mg q6h (Matt weighs in at about 40 kg, about half an average adult). We are trying the 6.00 pm, 11.00pm, 7.00am, 12.00 noon dose times so that Matt (and his Mum and Dad) can have a longer sleep at night. Matt's doctor (Dr T) would like to take things slowly and see how he goes for 3 weeks before starting him on mino. I asked Matt how he was feeling this morning and he said "absolutely, positively stuffed", but that is not unusual. He hasn't complained of nausea yet today (we are about 15 min away from his noon dose) so it will be interesting to see how he goes with lunch. His appetite is very poor (we don't have to worry too much about a low-carb diet just yet as he is low-everything) because he feels nauseated much of the time. One thing we have noticed over the last couple of weeks as we have made the house darker and darker (I now understand the reference to cave dwellers that I have read about on MP.com!) is that Matt has become more and more light sensitive. When He first got his Noirs a few weeks ago he couldn't imagine ever wearing the 2%, but I noticed that he even left the 2% glasses on in the doctor's rooms yesterday. We have been using the keto cream for the last week when we have to go out, but we intend keeping Matt inside as much as possible from here. No more school for the rest of the year - we will do as much as we can with him at home. Will report again soon, Regards, Robyn |
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BARNEY Moderator
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Dear Robyn, John and Matt, Please be sure that Matt drinks lots of water, that will help the Benicar work better and keep him from getting dehydrated. HANG IN THERE MATT, I KNOW YOU WILL MAKE IT!!!!!!!!!!!!! BARNEY |
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robyno Member in Phase 3
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Thanks Barney - I passed your message on to Matt and he is drinking lots of water. I think you could ask him to jump at the moment and he would ask how far! So, we are at Day 4, Benicar only, 20 mg q6h. Yesterday there were definite signs that Matt might be starting to get some relief from his symptoms with Benicar alone. His periods of nausea seemed to be less frequent and not last for quite as long. He also told me that, while he didn't want to get my hopes up (so naturally they started flying around the ceiling!), he thought that his background headache might be just a little better - I also noticed that he didn't constantly ask when it was time for his next paracetamol as he usually does, so that must mean something. He also seemed a little less tired than normal. A couple of times he said that he felt dizzy, but it hasn't been a problem so far. Having said that, he woke up this morning feeling nauseated, which is unusual, but it passed and breakfast was only delayed by a half hour or so. He is still quite cheerful and his Dad, who has been away for a couple of days for work, says that he thinks that Matt is doing a bit better. We will just take it one day at a time...... Regards, Robyn |
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BARNEY Moderator
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Matt, You are so sweet, thank you. We are all cheering for you and so very happy that you have started Benicar and are doing so well so far. HANG IN THERE, YOU WILL MAKE IT!!!! BARNEY |
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anne p inactive member 
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Good to see you have begun Matt. I do hope the Benicar makes a difference. It has improved my headaches and muscle pain enormously and I hope it does the same for you. Hope all goes well and it doesn't take long to stabilise on the Benicar. Best wishes Anne |
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robyno Member in Phase 3
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Thanks for your messages, Barney and Anne. I read them to Matt and he was very pleased – he will get back to you himself when he can look at a screen and read again. Well, Matt has been on Benicar (20mg Q6H) now for almost 7 full days. He seems to be tolerating it very well. Matt thinks his headache has improved a little bit, though he says his head becomes "agitated" if he tries to get up too quickly. I imagine that is just the dizziness people report when they start Benicar. He also says his ears are sometimes blocked and he has never complained of that before. He is still very, very tired, though occasionally that even lifts a little bit (but not nearly as often as he would like!). We have not noticed any change in his Tourette-like tic, nor in his hour or so of blurred/double vision that happens not long after he wakes up in the morning. He still feels nauseated for much of the day. One thing we have noticed, however, is that his voice is more normal now, and not hoarse like it has been for the past 3-4 months. And he is amazingly light sensitive. Our Dr intends waiting for a full 3 weeks before putting Matt on mino - I guess it doesn't hurt to be very cautious, particularly with a child. The only test he has requested is another vit D metabolite test to be done before he starts antibiotics (he had a test the day before he started Benicar, but we haven’t seen the results yet). Are there any other tests that we should let our Dr know about before Matt starts the mino? I am curious to find out about members’ experiences with the ketocarazole cream. Matt gets very tired of not being allowed to go outside until it gets dark, so a couple of times this past week we have dressed him up like a bank robber (hood, hat, glasses, gloves) and he has spread the keto cream on his face and neck, and we have had a quick trip to the library or HiFi shop. Are we wrong to feel that Matt is not getting light exposure? We haven’t really noticed much change in Matt’s symptoms after this “exposure”, but it is really too difficult to tell as he is adjusting to the Benicar anyway and we have only taken him out a couple of times. So it would be nice to hear from some experienced keto cream users whether the cream actually works as well as it sounds that it should (there are probably lots of posts addressing this exact issue that I haven’t found yet, so apologies if that is the case). Regards, Robyn |
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Sydney Chris Member in Phase 3 
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hi Robyn, The agitaged feeling Matt describes may well be hypertension (low blood pressure).. I have had this from day 1 on Votum, its never settled, but it's not too bad.. my doc advises that for most people it apparently resolves over a few weeks or so. I've also had the ear thing.. a new symptom for me.. getting wax build up... to releve this I use Hoppi (I think this is the correct spelling) Ear Wax Candles (ava at Health Food shops) every week or so. Look forward to hearing the advice re Keto cream. All the best Chris |
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Foundation Staff . 
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Robyn, I'm glad to hear that Matt is adjusting to the Benicar blockade without severe symptoms. Please tell him we are proud of him. The PHASE ONE GUIDELINE lists some basic labwork to assess for a baseline. Matt's doctor will be aware if there is a need to run other tests for organ function such as kidney or liver. It will be interesting to assess his 1,25-D after three weeks on Benicar. I can sympthasize with Matt feeling homebound. Time goes more slowly for a child and this is a major lifestyle change. It sounds like you have coped with this appropriately by limiting his excursions and covering up well. His increased photosensitivity is evidence of his need to diligently avoid sun/lights. We have anecdotal testimonials to Ketoconazole cream's effectiveness scattered on both websites. We will combine them into one post as we find them and put it in the Avoiding Sun/lights thread. It is advisable to remember that K-cream is a minor part of adapting to avoiding sunlight and covering up is far more effective. Matt's complaints of an agitated feeling in his head when arising quickly is due to his disease, not low blood pressure. This will resolve gradually as his inflammation resolves. Best, Meg |
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robyno Member in Phase 3
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Thanks Meg - I will look forward to reading the keto cream posts. Will take my copy of the Phase 1 protocol next time we see our Dr and ask if he wants any more tests. He has done so many tests over the last couple of months that there might not be anything left to do! Regards, Robyn |
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Aussie Barb Research Team
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Robyn there are some Members who use Keto Cream and go to work. Here is where we are posting the Testimonials.. Barb .... |
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Sydney Chris Member in Phase 3
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Barb, Can you advise when the K cream should be applied... the 'tinyurl' states it has the effect of limiting metabolisation POST exposure to the sun. ie: If I'm driving to work should I put it on at home in the morning (pre sun exposure in the car) OR after the drive (40 mins each way) when I get there ? Also, do you know how often should it be reapplied ? w' thanks.. Chris |
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Foundation Staff .
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Chris, How does ketoconazole cream work? states: It is suggested to apply a thin layer of K-cream once daily to exposed surfaces such as face and neck just before sunlight exposure. Best, Meg |
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Sydney Chris Member in Phase 3
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thanks Meg.. was looking at a different url ( the research report)... Chris |
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robyno Member in Phase 3
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It has now been 15 full days since Matt has been on Benicar (20 mg Q6H). He is still coping well with it - the main thing we notice is that he is chatty at mealtimes again (he used to contribute about 90% of mealtime conversation, and that is starting to return!) and his voice returns to normal more often than not. His headache has improved, but not disappeared, and sometimes his tic is less frequent. But he is still very, very tired. We have just received the results of the vit D tests that Matt had the day before he started the Benicar: 1,25D=30 pg/ml, 25D=21 ng/ml. So, his 1,25D has gone up from 22 to 30 since June, and his 25D has gone down from 27 to 21. But all seem to be within what the lab describes as the "normal range". It must be significant that the 1,25D numbers are going up. We will have Matt tested again next week. Our Dr wants to start Matt on mino at the end of next week, presumably at 25 mg every other day from what I have read on the site. We are all a bit nervous, but will take it as it comes..... Regards, Robyn |
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BARNEY Moderator
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Robyn, John & MATT, It is so good to hear that Matt is again a very important part of the conversation, that his voice is improving and that his headaches are lessening. I am not surprised by the fact that Matt is very very tired. I was so very very tired during Phase 1, but started to gain some strength as I entered into Phase 2. It seemed like all I did in Phase 1 was rest and I discovered that rest is very important on MP. HEY MATT, HANG IN THERE, WE ARE GOING TO MAKE IT!!!! BARNEY |
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anne p inactive member
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Dear Robyn John and Matt So glad there is a little improvement on the Benicar. I am interested to know if you are certain the blood was frozen from the time of collection right up until it was tested for the 1,25D. Sometimes it is left thawed and in the fridge until there are enough samples to test . You are probably right on top of these things but I thought I would ask just in case. All the best with the mino. Matt you are a trooper, good luck!! Will be thinking of you . kindest regards Anne |
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robyno Member in Phase 3
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I will let Matt know what you said about being very tired in Phase 1, Barney, and that it started to improve in Phase 2. We just can't wait to kiss these symptoms good bye forever! Anne, I am as sure as I can be that the samples were frozen for the vit D tests. Back in June I stressed it with the pathologist and then made follow-up phone calls and they assured me that this had been done. This time I spoke to the pathologist again to make sure that the samples would be frozen immediately - I'm not sure what else I can do. All his samples are taken first thing in the morning, before breakfast, to be consistent. But in the end I only have their word for it - who knows what individual lab technicians might do. Thanks for all the good wishes - it really helps knowing you guys are out there. Robyn |
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robyno Member in Phase 3
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Matt started his mino (25 mg) this morning after breakfast, so he is officially a Phase 1 MPer now! No herxing evident yet, but I guess it is a little early............ When it is time to increase the mino dose (probably after a couple of weeks?), does he take 50 mg altogether rather than 2x 25 mg spread over the day? I would have thought so but it was something that our Dr wanted to check. I guess we would have the same question for the other dose increases - I had presumed that Matt would take the whole dose at once, whatever it is, but our Dr was a bit worried. I suppose it all depends on how severe the herxes are - we have absolutely no feel for that right now, so we will be guided by Dr Marshall and the MP staff as we go. It's hard not to be a little anxious....... Our Dr is worried about Matt using the keto cream on a regular basis, so we have decided not to use it any more (we have enough to worry about as it is) and wrap Matt up in a balaclava the next time he has to go out during the day. The poor kid will look even more like a bank robber now, but we don't know what else to do. I should post a photo, if I can work out how to do it! Regards, Robyn |
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Dr Trevor Marshall Research Team
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Robyn, It is important that the minocycline dose be taken as a single bolus every 48h to 72h. The concentration rises rapidly, to the MIC when you are on 100mg doses, and then it decays slowly. This is the way that works best, and it will allow Matt to sense the different herx symptoms he will have on day 2, compared to those in the hours following the ingestion of the abx. I have to agree with Doc about the keto cream, I am afraid I think it should be reserved for emergencies...Trevor.. |
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robyno Member in Phase 3
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Thanks Trevor - I will pass that on to our Dr. Robyn |
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Foundation Staff .
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Hi Robyn, Congratulations to Matt for starting the mino. He's on his way! K-cream should be reserved for folks who must go outside. We have researched sunscreens carefully and determined that they do not provide enough protection from natural light for folks with Th1 inflammation. Although Matt might miss the fresh air, staying indoors during daylight hours is much more vital to his health. There are very few doctors who are experienced enough with the Marshall Protocol not to need some reminding every once in awhile. You could print out PHASE ONE GUIDELINE for the doctor who seems confused about mino dosing. We have a new tool that you may wish to print out and give to your MP doctor. One side is a quick reference to the MP and the other is a list of medications to avoid while on the MP. I lamminated them back to back and gave a copy to my MP doctor as a thank you for supporting me. Barb will send you the links as the file is too large to upload to the website. Best, Meg |
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robyno Member in Phase 3
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Thanks for this Trevor. Is there something you have written somewhere to explain why the abx work best when the titres are declining? Its got us and our doctor intrigued. John this time PS Matt has been saying his headache is a bit worse over the last two hours (6-8hrs after his first pill) - maybe the herx although could still be in his normal range of variation J |
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Aussie Barb Research Team
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John, Robyn, Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero, so increasing mino frequency although seeming counter-intuitive actually dampens Herxheimer reactions best... see FAQ Why do we take minocycline only every other day? Why do I feel worse on the second day? and the aim is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D.. should the herx become intolerable see FAQ My Herxheimer reaction is too strong. What should I do? Frequent minocycline dosing may reduce Herxing and Herxing efficiency to tolerable. - Temporarily replace mino 25mg QOD schedule with mino 25mg every 12 hours or every 24 hours. The Essential Information is in ABOUT THE MARSHALL PROTOCOL and all links alphabetised in the ABC of MP let us know if you have any questions, Barb ... |
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BARNEY Moderator
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MATT, ROBYN & JOHN, MATT....CONGRATULATIONS ON BECOMING A FULL MPer EVEN THO I BELIEVE YOU WERE ONE THE DAY YOU STARTED BENICAR. PLEASE REMEMBER TO GET LOTS OF REST AND DRINK PLENTY OF FLUIDS SO THAT THE BENICAR WILL WORK GOOD. THE HERXHEIMER REACTIONS MIGHT REQUIRE A PAIN PILL OCASSIONALY BUT IF YOU FOLLOW AUSSIE BARB'S LEAD, I AM SURE YOU WILL DO QUITE WELL. I COUNT ON HER WISDOM A LOT. HERE ARE SOME CARTWHEELS FOR YOUR MOVING ON: @@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@ AND SOME SMILES: HANG IN THERE MATT, WE WILL MAKE IT!!!! BARNEY |
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robyno Member in Phase 3
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Thanks for your good wishes, Barney - Matt loves to hear about your messages, especially the cartwheels. He is very impressed that a grandmother knows her way around the internet (apologies to all the grandmothers out there, but Matt thinks all grandmothers are as old as his!). Well, Matt definitely herxed after his first dose of mino. After about 6 hr his head sharted to feel worse and his body language was "pre-Benicar". That lasted all the next day, but he woke up this morning feeling a bit better and managed a smile or two over breakfast - just in time for his next mino dose. It is hard to watch, but knowing that he is killing the b------s is keeping us all going. He is on the way to getting better at last. Those summary sheets are wonderful, Meg (thanks for sending them, Barb!) - I will laminate them for our doctor, as you suggested. I did photocopy the Phase 1 Guideline for him, but he has a lot of patients and only two on the MP so the summary sheets will be a big help. I will try to remember to take it with me when we visit him as well. So far so good......... Regards, Robyn |
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robyno Member in Phase 3
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Matt had his third dose of 25 mg mino this morning and all is well. He reacted to the second dose much the same as the first - definitely out of it 5-6 hrs after taking it, then not feeling any better until he wakes up on the morning of his next dose. I think he feels worse while herxing than he felt even before the Benicar - I usually read to him every night before he turns in, but since taking the mino he is turning in for the night straight after dinner without any reading. That is unusual as he loves me to read to him. But, Matt assures me that he can tolerate the herxing so we will stick with what we are doing while the going is good and keep killing those horrible critters as fast as we can. Regards, Robyn |
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robyno Member in Phase 3
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Matt woke up this morning (ie the day after his third 25 mg dose of mino) saying that his headache is not worse than it was yesterday, as is usually the case the day after his mino dose. So it sounds like his herxes are starting to taper off! So, we seem to be going along nicely here...... Regards, Robyn |
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Dr Trevor Marshall Research Team
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Sounds good. Say 'hi' to Matt for me |
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robyno Member in Phase 3
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Matt had his 5th dose of 25 mg mino on Sunday after lunch, and is due again tomorrow. By 6.00 pm Sunday night he was feeling worse, but commented before bed that his headache had plateaued again. Today he was about the same ie his herxing did not get any worse. So the herxing period was quite short (a few hours) and we will see what happens tomorrow. We are a bit puzzled as to what to expect when we need to decide that he has stopped herxing before we increase his mino dose to 50 mg. His base line has definitely changed from when he improved on Benicar alone. His symptoms may even be worse than before Benicar - his tic is more pronounced and he might be even more tired, and his voice is hoarse all the time. They are the main symptoms that we could see some change in after he started the Benicar. Are we waiting for his symptoms to return to the level they were when he was on Benicar alone, or are we just waiting for him not to feel worse when he takes the mino? Regards, Robyn |
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Aussie Barb Research Team
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Robyn Thank you for posting.. Sometimes the herx becomes less when it is time to increase the dose, and in some, the symptoms can change to a plateau of unwellness showing it is time to increase.. and after 6 doses at a level of mino this may be so. If you think it may be the case the increased dose of mino 50mg can be taken, and, if the herx heads towards being intolerable at all, a dose of mino 25mg can be taken to slow it down.. There is more information in these 2 posts.. re symptoms & Increasing Tip let us know if you have any questions at all. all best to you all, Barb ... |
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robyno Member in Phase 3
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Matt had his 7th dose of 25 mg mino on Thursday and did not really experience any worsening of symptoms, though his symptoms are definitely much worse than when he was on Benicar alone. But he seems to have plateaued now. So today, after lunch, we will give him his first dose of 50 mg mino. IF his herxes become intolerable (and they might not), our doctor has said that he would like us to try easing his symptoms with Benicar every 4 hr rather than 6 hr as we are doing now, rather than giving him more mino straight off. If that does not do the trick, then we should give him 25 mg mino at 12 or 24 hr, and start the 48 hr cycle from then. So that is our plan for now, unless we hear otherwise.......... We realise that this is something that we just have to work our way through and see what works for Matt. He is a tough little b....... and the hardest thing will be convincing him that it is OK to say his symptoms are just too much. Will report back soon, Regards, Robyn |
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BARNEY Moderator
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Hey Matt, Your picture is great.... now I can put the face with the young man who is suffering with a Th1 disease...and is getting well on MP. My Th1 disease is sarc. Glad to see you are progressing. It is a slow process but a good one and we will all be well in a couple years. HANG IN THERE MATT, WE WILL MAKE IT!!! BARNEY |
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robyno Member in Phase 3
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Matt started herxing 4-5 hr after his first dose of 50 mg mino on Saturday. He was pretty miserable on Sunday (stayed in his pitch-black room most of the day, listening to Harry Potter on CD - thank heaven for Harry Potter!), but he said that the herxing might not have been as bad as it was when he had his first 25 mg dose a couple of weeks ago, so I guess that that means it is certainly no worse. Matt's headache started to ease a bit at about 7.00 pm last night, and was not quite as bad this morning. So he is ready for his next 50 mg mino after lunch today. So, Matt continues to do nicely. I am inclined to give him 4 hr Benicar tomorrow if his headache is worse than it was yesterday - I just need to convince him that it would be OK, and that he would still be killing those bugs as fast as he can. Regards, Robyn |
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Aussie Barb Research Team
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Good to hear from you Robyn and John and Matt, thanks. and all is going well.. The aim is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D.. Adjusting the Meds dosing to relieve symptoms is necessary to also keep the bacteria killing to a level that is managable in the body.. see FAQ How does Benicar work? Why is it superior to other ARBs? Should I take it every six or eight hours? says in part: Benicar has two effects - both enabling the immune system to kill the Th1 pathogens, and also reducing the generated cytokines to give symptomatic relief.< Dont hesitate to use the meds as per the guidelines to keep all tolerable.. all best, Barb ... |
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robyno Member in Phase 3
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Thanks Barb - I will read your post out to Matt and try to reassure him that it is OK to have a dose of Benicar after 4 hr when the going gets tough. Cheers, Robyn |
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Dr Trevor Marshall Research Team
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Robyn, Does Matt listen to Jim Dale's Harry Potter narration or the British narration? There is a difference, we prefer Jim Dale's in my family. Characterizations are far more precise, IMO. Say 'hi' to Matt for me. |
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robyno Member in Phase 3
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Hi Trevor I think you and Matt are about to have your first disagreement - he prefers the English version! I'll let the two of you sort that one out when he is well enough to log on to the computer! Regards, Robyn |
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Dr Trevor Marshall Research Team
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Please tell Matt I have all 6 of the Jim Dale audiobooks on my MP3 player. And my daughter is coming down from Berkeley on 18th so we can attend the opening of the "Goblet of Fire" film together ..Trevor.. ps: Matt can contact me using "Trevor@hogwarts-alumni.co.uk" Now isn't that scary??(LOL) |
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robyno Member in Phase 3
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Matt laughed and shook his head when I told him about your neat email address, Trevor - I am not sure what that means! We are all big Harry Potter fans and envy you seeing the new movie soon. We will wait until Matt can look at a screen again before we see it - I don't think we could bear to go without him. It has been over a year now since Matt was able to watch TV or see a movie. He listens to The Simpsons every night because he has seen all the episodes so many times he knows what is happening without having to see it! It will be so wonderful when he can watch TV again - I never thought I would be saying that at any stage in his life, but there you are. Matt had his 3rd dose of 50 mg mino after lunch today. His herxing wasn't quite as bad after the 2nd dose as it was after the first 50 mg dose, but we gave him 4 hr Benicar yesterday and he said that helped. We will do that in future after the first couple of increased doses, just to help him along. This morning he felt a bit better again, so the herxing is tapering off. So he continues to do well. Regards, Robyn |
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Dr Trevor Marshall Research Team
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Robyn, I remember what it was like not to be able to handle the stress of movies or films. Matt will get through it, but it takes a year or two. And there will be all those wonderful (but scary) films about Hogwarts for him to explore. ..Trevor.. ps: I sent him an email from Hogwarts to your address |
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robyno Member in Phase 3
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Thanks for the messages, Trevor - Matt will be able to answer you himself one day. It's interesting that you used to find movies and TV too stressful to watch. I asked Matt exactly what happens when he tries to watch a screen and he says it "just hurts". He is referring there to his headache - that was his first symptom and the one that predominates for him. So when he tells us how bad he is herxing, he answers in relation to how bad his head feels. We can judge many of his other symptoms ourselves. So I wonder if your response to TV / films when you were ill is similar to Matt's, just manifest a bit differently? I guess that would be difficult to answer. Matt will have his 5th dose of 50 mg mino tomorrow. Overall he has handled the 50 mg mino a bit more easily than the 25 mg. The herxing headache is tapering off, but we notice that he sleeps more and seems to sleep a bit better. His dizziness when he gets out of bed has increased over the last few days, but it is not too much of a problem. The intensity of his tic has tapered off over the last couple of days. All in all, he is doing pretty well. We got the results of his last vit D test on Friday. The blood was taken on 7 Oct 05, 3 weeks and 3 days after Matt had been on Benicar, and the day before he started the mino. Before I say what the numbers are, I should say that our message about keeping the serum frozen before testing must have at last sunk in because the pathologist made Matt wait until the courier was about to arrive before taking the blood, and then put a "must keep frozen" sticker on the sample. That was great, but I couldn't help but wonder whay they had not done that the previous two times........OK, the 1,25-vit D = 27 pg/ml (it was 30 on 12 Sept, the day before Matt started on Benicar), and the 25 vitD = 23.6 ng/ml (it was 21 on 12 Sept). So, I think there must be serious doubt about the previous readings as I think that the 1,25 vit D reading should have gone down by more than that after more than 3 weeks on Benicar. Would be interested to hear what the experts think...... I am tempted to get another blood test done at another lab, if Matt is up to a trip to the pathologist. I will see how he feels about a quick trip out this week. Well, that is about it for now, Regards, Robyn |
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Dr Trevor Marshall Research Team
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Robyn, The Angiotensin blockade usually cuts the 1,25-D dramatically. But there is little benefit in doing more testing, I think. Just focus on getting Matt better. Testing his 25-D every couple of months, to make sure it drops below the teens, is a good idea, though. But the 1,25-D will be all over the place now, with a 4-6 hour half-life. I used to find that television sets flickered really badly, and thought that the flicker was giving me headaches. This is particularly so for 50Hz PAL (Australian/European) TV sets. Then I found that wearing the dark NoIR(equivalent) cut out the flicker, and, since recovering, I haven't seen any screen flickering for several years, even with today's clear glasses.. So you might look into that factor. But one's ability to handle stress is also reduced by the disease. The (diseased) body just can't handle stress, even the stress of a fictional TV show. Is it because one or more of the pathogens flourish in an epinephrine-rich environment (eg M.Leprae)? Just don't know yet... |
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robyno Member in Phase 3
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I won't worry about another vit D test for a couple of months then - it will avoid having to take Matt out, which is good. Matt has noticed the flickering in the TV that you mentioned, Trevor. I told him what you said about the very dark glasses so he tried it again, but no luck, unfortunately. Matt seems particularly sensitive to moving pictures / words / letters, which is probably why he can't read or write or watch a screen even with his darkest glasses on. He hates driving in the car as well and has to sit in the front so he can avoid watching the scenery pass by out of the side windows. Even then he climbs up a wall if he can't get out and walk around every 20-30 min or so. It is all very interesting. I can't help but smile when I think of the paediatric neurologist who suggested that we take 3 months off to drive around Australia to take Matt's mind off his very strange symptoms - wouldn't that be a fun trip!! Matt had his 7th dose of 50 mg mino yesterday. He only herxed after the first couple of 50 mg doses so we planned to up the dose to 75 mg tomorrow (ie two weeks after the last increase in dose). He thinks he might be coming down with a cold - his Dad has a bad one at the moment and Matt has a bit of a tickle in his throat this morning. Should we go ahead as planned with the increased dose tomorrow, or should we wait and see if a cold develops? Would it make any difference? Regards, Robyn |
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Dr Trevor Marshall Research Team
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Robyn, The MP will make no difference to the course of a cold. If anything, it will allow the immune system a better chance to fight the virus. On the other hand, flu-like symptoms are a very common manifestation of herx. They come and go more quickly than a viral cold does. I am keen to help Doc get Matt to phase 2, as it seems you have the herx all figured out, so it would be good to continue ramping as he is able. My guess is that the 'modified phase 2' is going to have a profound effect on Matt's psyche, and hopefully move him beyond these neurological manifestations more quickly. |
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robyno Member in Phase 3
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Trevor - that would be soooooo wonderful! I just had a chat to Aussie Barb and she advised us to send for the Phase 2 questionnaire just as soon as Matt goes up to 100 mg mino, which should be in two weeks time if all goes as well as it has until now. We have an appointment with our doctor on 29 Nov, so that should work in well with getting prescriptions and reading up on what Phase 2 is all about. A "modified Phase 2" sounds intriguing........ We just can't wait to see these unnerving symptoms disappear. Matt can hardly remember not having a headache, and John and I still freak every time his tic gets louder or stronger. It will be wonderful to see them disappear and Matt get his life back. Regards, Robyn |
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Dr Trevor Marshall Research Team
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Er, well, yes, well, er um, I don't know how to say this, but the herx will probably make them a little worse before they get a little better, so please don't get too excited just yet |
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robyno Member in Phase 3
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It doesn't take much to get us excited around here, Trevor - every time Matt ramps up his mino dose he does it to loud applause! But don't worry, all feet are firmly planted on the ground and we know we are in for the long haul. Matt took his first dose of 75 mg yesterday after lunch and started complaining that his head was getting worse by late afternoon. He said it's not as bad as it was after the 50 or 25 mg doses, so each ramp-up he seems to be tolerating better than the last. He is very tired and his voice is quite hoarse. His tic seems about the same, though. We have him on 4 hr Benicar today to help him through the worst of the herx. And ,of course, Harry Potter is doing his bit as well! So, Matt continues along OK........ Regards, Robyn |
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robyno Member in Phase 3
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It has been "steady as she goes" for Matt this past week. His cold didn't eventuate into anything too awful and was gone in a few days. Matt had his 5th dose of 75 mg mino after lunch today. He didn't herx much after the 4th dose so we are not expecting much of a reaction to this one. We gave Matt 4hr Benicar the day after each of his first three 75 mg doses this time as he says that Benicar beats paracetamol for a headache any day. However, his dizziness increased noticeably after the third increase in Benicar so it will be interesting to see what he decides next time. We are very guided what Matt thinks these days - he is getting a real feel for his meds and his illness. Yesterday was a big day for Matt. Our doctor has had him on a gluten-free diet for the last 3 months, and yesterday his 3 month wait for a piece of wholemeal toast was up! Boy, I have never seen anyone enjoy a piece of toast as much as Matt did yesterday at breakfast time! With his nausea it is very hard to tempt him to eat much at all, but he had a piece of toast for breakfast and lunch (you can see how little he is eating at the moment) and then two for afternoon tea! He has a couple of pieces of fruit during the day, and a small helping of meat and veg for dinner, and that is about it. Our doctor is keeping an eye on his weight and we are sure he is getting taller (we will measure him at his next doctor's appointment), but I will be very glad when he gets his appetite back again (though he has never been a big eater). I have read the posts on foods to avoid and the warnings about folate additives to white bread. Do any of the Aussies know if the same is true in Australia? We are not missing white bread as we have always eaten wholemeal bread, but we are curious as to how much of a problem folate additives are here. The labels on all the wholemeal breads I checked yesterday list both wholemeal flour and soya flour as ingredients, but didn't give the percentage of either (and I have had no luck trying to find out via the internet, though I am not very patient). Might this be a problem? I am in the process of trying to find out from the local bakery what they put in their wholemeal bread. What do all the Aussie MPers advise? One thing Matt's gluten-free diet did was to make me very familiar with the health food section of the supermarket. All the ingredient lists on the health foods are necessarily very complete and the rice / corn flours that have folate added are very clearly labelled and easy to avoid. Will keep buying many of those products (eg corn and rice pasta, which we all like), but unfortunately the gluten-free bread is revolting (Matt's words, though the rest of us are inclined to agree with him!). That's our news for now. We are all looking forward to the 100 mg dose of mino next Saturday, then the move to Phase 2 some time after that. Regards, Robyn |
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Dr Trevor Marshall Research Team
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Robyn, Minimize the soy content in his bread. Some have said it upsets them. Trying for a rye or wheat blend is best, I think. If folate is added it will be on the ingredients, although you might check the flour. The last time I looked, Australia was not supplementing flour. |
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robyno Member in Phase 3
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I contacted the Bread Research Institute in Sydney to check out the issue of folate in our flour and they have assured me that it is NOT added to flour routinely, so that is still the case, Trevor. Where it is added it would be clearly marked in the list of ingredients. I also rang Helga's (the Aussies will know all about Helga's) to ask how much soya flour they add to their wholemeal and light rye breads and was told 0.5%. So they don't add much, but our local bakery doesn't add any so I think we'll go with that. Matt is still savouring the luxury of a piece of toast..... Matt will have his first dose of 100 mg tomorrow. He tolerated the 7x 75 mg doses very well, though he still herxed very mildly after his 6th dose, but not his 7th. Previously he had stopped herxing after the 3rd or 4th doses. While his headache is no better than it was before he started Benicar, and his tic is a bit stronger, and his other neurological symptoms don't seem to have changed, we have noticed two very small moves in the "improvement" direction that I will mention even though they are very slight. For the past 6-7 months (I can't remember exactly when we first noticed), when emptying Matt's waste paper basket, we have noticed a small amount of blood on his tissues (sorry if this is too much detail!!). We had assumed that it was just another part of his illness. Well, a few weeks ago it stopped, which would make it sometime after he started his 50 mg mino doses. OK, it might be insignificant, but it's something. The second thing to note is that Matt said a few days ago that he didn't think his hair felt quite as sensitive. He still won't let me near him with a comb or a pair of scissors, but he says it definitely feels a bit better. So that's something, too. That's all I have to report for now. Regards, Robyn |
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jillian Member in Phase 2 
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Robyn, How exciting to notice some changes for Matt. No good change is a small change in my book, its HUGE. Not only is something not progressing, it's getting better. Without the MP, we've all been getting worse. Please give my personal greetings to Matt. I've been watching his progress. I can't imagine how tough it is for him. I too was sick as a child (sarc), although not like he is. Also, I can't tell you what a warm spot you 'MP' parents have in my heart. 'til later, Jillian from North Dakota |
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Aussie Barb Research Team
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Robyn Matt John, Thank you for your report.. good to see your progress Here are some Hair posts  Here are the FAQs How do I know if I'm ready for phase two? Where can I find phase two and three? all best, Barb ... |
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robyno Member in Phase 3
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Thanks for your encouragement, Jillian and Barb. We are thrilled with how well Matt seems to be doing. His herx (ie headache) after the first dose of 100 mg mino was tolerable but we gave him 4 hr Benicar to help him through it the following day (yesterday). By yesterday evening it had started to wane, and this morning he said he was ready for his second dose of 100 mg mino after lunch. His tic is still quite strong (John and I can't wait to see that symptom disappear, it is so unnerving!) but he is cheerful enough. Matt was pleased to meet another MPer (almost) yesterday when ElizaH came over for lunch - there are very few MPers in Canberra so it's important that they stick together! Regards, Robyn |
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supersarcboy Member in Phase 2/3 
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Dear Robyn, Just wanted to say hello and let Matt and you all know how much we are all pulling for him. We sure admire him. So glad to hear he can keep his spirits up, what courage he has! Hopefully, my son Michael should be trudging along after Matt. Warmest Regards, Dawn, Michael's Mom |
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robyno Member in Phase 3
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Hi Dawn (and Michael) Lovely to hear from you! Matt and I have been following Michael's progress as well, and Matt was pretty upset to hear that Michael needed an oxygen tank to help him through the day. "Golly, he must fell worse than I do!" was the reaction, and he thought he felt bad enough! I am sure that as the boys heal and start to feel well enough they will have a lot of stories to swap. Good luck with the mino pulsing - we will be watching Michael's progress eagerly and hoping that he rockets along just as Matt has done so far (touch wood!). I don't like to think about where we would be without the MP! Take care, and give our warm regards to Michael, Robyn (and Matt) |
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robyno Member in Phase 3
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Matt will be taking his 7th dose of 100 mg mino tomorrow. He has stopped herxing so he is all set to begin a modified Phase 2 on the weekend. Matt had his first trip out of the house since he started mino yesterday, when we went to see our doctor late in the afternoon. We dressed him up in his balaclava (the hood you made him comes off when he jolts with his tic, ElizaH, so we will have to wait for an improvement there before that will be very useful) and hood and scarf and his glasses and the only bit of skin that was visible was a tiny bit of the top of his nose. He thought he looked like a "hood" and couldn't wait to see the looks on people's faces when they spied him. I think he was a bit disappointed when nobody took much notice! It was interesting listening to Matt tell our doctor how he is doing. Matt said that he was sleeping better now and could even look at pictures eg on the wall at home without it hurting as much. So there's another couple of little improvements that are actually HUGE. Matt did not seem to be affected from his small amount of light exposure yesterday. We were all set to increase his Benicar to 4 hourly today but he didn't think he needed it so we didn't bother. We are pleased that we were able to get out with so little exposure, but it is not something that we will do often. He is much happier at home, listening to his audio books and CDs and having a nap whenever he needs to. He is still very tired. That's our news for now. I'll have to post on two forums from now on - hope I don't get confused. Regards, Robyn |
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Aussie Barb Research Team
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Thanks for posting ... "It was interesting listening to Matt tell our doctor how he is doing. Matt said that he was sleeping better now and could even look at pictures eg on the wall at home without it hurting as much. So there's another couple of little improvements that are actually HUGE." good to see the progress..  all best for Phase 2.. Barb and the MP Team... |
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supersarcboy Member in Phase 2/3
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Robyn and Matt, We are jumping for joy for you all over here. I am so excited that Matt is noticing improvements, how awesome it is to see growth. KEEP UP THE GOOD WORK MATT, WE'RE PULLING FOR YOU BUDDY! All Our Best, Dawn & Michael |
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BARNEY Moderator
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Cartwheels for Matt@@@@@@@@@@@@@@@@@@@@@@@@@@ Matt, I am so proud of you and looking so forward to your next improvements...can hardly wait for the day that you can do your own post. You are such a trooper. Hang in there Matt, we will all make it!!! Grandma Barney |
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robyno Member in Phase 3
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Thanks for all your good wishes, guys. It IS great to see the improvements happening, isn't it, even if they are just little ones. I hadn't even realised that it hurt so much to even just look a a picture on the wall until Matt said it was starting to get easier! Makes me wonder what else he has been putting up with that we don't know about. Dawn - tell Michael that Matt is a fan of those Yugi-Oh cards as well (you can tell that I'm not as I have no idea how to spell it!) and I am sure he will be playing with them again when he is well enough. I'm sure the boys will have a lot to talk about besides the MP. We are very much looking forward to reading about all of Michael's improvements as well. I forgot to mention in my last post that Matt's doctor is worried about his muscle tone now that he is virtually house-bound and not getting much exercise. He would like to see Matt develop some sort of exercise program. So I have just re-read the exercise threads and decided to give it a big miss for now. Matt is just too tired to be up to much of anything, let alone exercise. I think we might just wait until he is feeling a lot better before worrying too much about exercise. Before Matt got sick he used to run everywhere (we used to joke that he was born without an "off button" - especially on his mouth, but don't tell him I said that!) so I am sure he will get fit again pretty quickly. Hope that is the correct decision?? Thanks again, everyone. Regards, Robyn |
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Aussie Barb Research Team
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Thanks for posting Robyn As you have read in the exercise threads it is better to follow what suits each individual.. I am sure that as Matt gets well there will be no holding him down.. muscle tone will be the least of his problems.  all best, Barb ...  |
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robyno Member in Phase 3
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Matt is now a week into a modified Phase 2 MP and coping very well. His reaction has been much as it was during Phase 1 - the herxing is tolerable, particularly with Benicar q4h the day after the first couple of doses, and he is very pleased with himself. He wants me to cut his hair tomorrow, but not before I take plenty of photos - his fringe is half way down his nose and the back is starting to curl up past his collar! But he says it doesn't hurt to touch his hair any more so we'll see how we go. It will be a huge step. Matt is trying very hard to find any possible sign of improvement - it breaks your heart! I spoke with his teachers at school this week and was very relieved to hear that home schooling will not be too much of a problem next year and that they will organise it for us. Matt missed most of this year of school (year 7). He got more and more tired as the year went on and in the finish was only managing to get there for a few hours on a couple of afternoons per week. Once he started the MP we just kept him at home - he was too tired to even think about school work any way and we wanted to keep him out of the light. But as he starts to improve next year he should be able to manage to pick up his studies. Once he can read and write and use a computer again he can do a lot of catching up even when keeping out of the light. I came home from the school all excited at what we should be able to achieve once Matt is not so tired anymore and more of his symptoms have resolved, but I had forgotten just how long a year is to a 13 yr old. The thought of "home school" next year was not appreciated by Matt one little bit. I was told in no uncertain terms that he will not have to stay at home next year, that he is going to get better very quickly from here and that he will be at school with his mates, in his classes next year just you wait and see! Oops - I think I will have to be very careful not to look too far ahead, at least when I'm talking to Matt. We'll just take it as it comes and see how we go, month by month. I don't want to keep things from him but there's no point in scaring him, either. That's our news for this week. All is going well and planning for Christmas is a great distraction. Regards, Robyn |
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BARNEY Moderator
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Oh Matt, you are such a trooper!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So are you Robyn. Matt, Robyn.....take one day at a time. Take it from me, going out in the light to do what you think you need to do, will only slow your progress. I did what you are doing (stayed in the dark) and did not cheat at all, even with food, but since being out in light exposure and eating probably some things I shouldn't (caring for my elderly parents in another state), things are not going as well. Temptations to remove glasses (when you shouldn't) and to eat wrong things. It is much harder outside your home, than staying at home. It is only 2/3 years and if you keep busy at home, it will go quickly. My 3 grandchildren home schooled and I loved it. I could take them home with me for as long as I wanted because I took their school work with them and I was their homeschool teacher for all the time I had them. I learned so very very much from their school and even remembered things I had forgotten from school. It seems like I just started MP yesterday, but on Jan 1, I will celebrate 1 year on MP. I will be well before I know what happened because I will be back in my own home (in the dark) next month. Take good care of you, Matt, and make your choices very carefully. It is a very short time on MP and a very long time we have been sick. HANG IN THERE, WE WILL MAKE IT!!! BARNEY |
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supersarcboy Member in Phase 2/3
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Oh Robyn..how I feel your pain. Michael has been at home since May of this year and he pretty much told me in no uncertain terms also that he is going to school next year. He is having such a hard time being cut off from school. He has a teacher who comes to the house two nights a week. I guess we both have to just take one day at a time, and cross that bridge when it comes. But, I already foresee trobled waters ahead. Hang in there. I sure wish you were closer so we could get the boys together. Take care and know my heart is with you. Best Regards, Dawn |
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robyno Member in Phase 3
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Thanks Barney and Dawn - it's great knowing you are all there! I agree, Dawn, we just need to take it one day at a time. We will tackle the problems one at a time and see if we can find inventive ways around them. Matt knows what he can and can't do, and I am sure Michael is the same. They won't be in any hurry to make themselves feel even worse. Matt is rocketing along on his modified Phase II and seems to have the same pattern of herxing as he did in Phase I. We even seem to be progressing a little more quickly, though we will have to be careful not to push it too quickly. Matt is the one asking what are we waiting for when it comes to ramping up the abx! Matt let me cut his hair, which is a very big step. He also thinks that his "pulses" (the name he gives his tic) is starting to "feel different" - it doesn't hurt quite so much, which might mean that it is on the way out. It certainly seems to us to be a bit quieter but it is hard for us to see much difference yet. But Matt would know - something is definitely happening. Matt is very excited about Christmas. Some of our family is arriving tomorrow, which will be a great distraction. The only Harry Potter audio book that he doesn't have yet is on its way, so he'll be set! Matt, John, David and I would like to wish all the staff and MPers a wonderful Christmas. Because of you guys we will have a great Christmas - we are very grateful to you all. Regards, Robyn |
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BARNEY Moderator
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Matt's Family, MERRY CHRISTMAS AND HAPPY NEW YEAR!!!! I almost cry when I hear you tell of Matt's improvements no matter how small they are. He is so sweet and doing a great job of MPing. HANG IN THERE, WE WILL MAKE IT!!!! BARNEY |
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Aussie Barb Research Team
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Thank You Robyn, John and Matt, Great to hear all your news.. and we are pleased that you are looking forward to a great Christmas.. To Matt and Michael and Families, We acknowledge the effort that it takes within and from a Family to do MP.. for All of You. Thank You All for working with us.. we are so very happy to assist you in any way we can..  Barb ... |
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robyno Member in Phase 3
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Matt had a great Christmas, and so did the rest of us. We managed to find quite a few presents that Matt can use now, without having to wait untill he is better. Audio books are a great invention, and one of his favourite authors (John Marsden - can thoroughly recommend his books for young adults - and not-so-young ones as well) released a new book before Christmas that was also available on CD, so that was a big hit. In an inspired move my sister had a CD made for Matt in which he could live out his footballing dream - it was a broadcast of a Grand Final in which he took the field for his favourite team (Carlton, for all the Aussies who would know what I am talking about) in the dying moments, with his team down, to kick three goals in quick succession and win the game! I haven't seen Matt laugh so much in a long time! We also made a list today of all of Matt's symptoms so that we can tick them off, with the date at which they went or started to disappear. We could already tick off the nose bleeds and haircut and the chest pain that he complained of occasionally that seems to have disappeared completely. Then there is his tic that is starting to feel different and we hope is on the way out. Now he reports that he is starting to read the odd phrase like a label on a box or the time on a clock! That is definitely big news and a step in the right direction. So our list is looking better and better all the time. The other thing that has made for a great Christmas is reading that Aussie Barb's list is growing as well!! We are so happy for you Barb - you do so much for everybody else you just have to get better yourself. And it sounds like you are! We are very much looking forward to a great 2006 and sharing it with all the MPers and staff. Take care, Robyn |
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Aussie Barb Research Team
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It is a Happy New Year already with so much good news!! kicked (at least) three goals in quick succession! nose bleeds haircut chest pain his tic is starting to feel different and we hope is on the way out. is starting to read the odd phrase like a label on a box or the time on a clock! Thank you All, Barb...  << cheering for 'Carlton Matt' |
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robyno Member in Phase 3
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Thanks for your cheer squad, Barb - the poor old Blues can do with some cheering! I'm looking forward to showing them to Matt when he can look at a screen again. Matt is continuing on nicely with his modified Phase 2 MP. He is moving through the antibiotic doses even more quickly than he did during Phase 1. Between his herxes we can notice that his energy levels are increasing slightly and he is spending more time out of his room. I am enjoying being able to read to him again and not have him say that he is too tired to listen. He is also reading labels and clocks all the time, out loud of course, so we can see how well he is doing! He tells us a few times each day that he is getting better so his mood is excellent. While he is not telling us the time he is admiring his new iPOD speakers that he spent all his Christmas money on (they "rock", apparently!). I forgot to mention in the last post that we asked Matt why he thought he was eating so much better now. He said that not having that horrible taste in his mouth any more helps........drrrrrrr! - we had fogotten to put that on his symptom list and fogotten to ask him how it was going for quite a while. Apparently the metallic taste he had for months has been completely gone for weeks now, so there is another one to add to our list and give a big tick to! So, while we have a very long way to go, we have come a mile already. Regards, Robyn |
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Margo Member in Phase 3
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Great news about Matt's improvements! Improvement in the little things really helps with quality of life. Margo |
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robyno Member in Phase 3
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Matt has struggled a bit more than usual this past week as we increased his abx dose a bit too quickly and didn't give him his couple of herx-free days. We have learned our lesson and so has he - the MP is something that you just can't hurry. His next couple of days should be pretty much herx-free so it will be interesting to gauge his level of improvement. Matt told me today that he looks at pictures and the clock and labels etc without even thinking now as it doesn't hurt anymore. He is so looking forward to being able to read a book again - it will happen, we just have to be patient. Matt's 25-OH vit D levels were down in their teens last ime it was measured (12.4 ng/ml on 7 Dec 05), so that is good news. Regards, Robyn |
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robyno Member in Phase 3
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Matt enjoyed his couple of herx-free days last week. It was great to see that his tic is so much quieter when he is not herxing. He asked me to take him for a drive past his school just to check it out but was very cheerful about it and told me that I shouldn't worry and that he would be back in no time. Kids are funny - they complain about having to go back to school after the holidays but deep down it is just so important to them that they be there. I know I won't ever hear Matt complain about going back to school again!! Matt's reading is improving all the time. Today he read all the headlines and big print on the front page of the Canberra Times, and even a couple of lines of the fine print. That is fantastic! Matt just yelled out to me to say hi to everyone, especially Aussie Barb and Barney. So, "Hi!!" from Matt! He sure is cheerful these days! Regards, Robyn |
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Sydney Chris Member in Phase 3
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Hi Robyn, I don't have Barb's selecton of crazy cartoons, but if I did I would use the one with the really really big smile.. .  Congratulations to Matt and yourself on your progress and understanding of how best to use the protocol to successfully heal. Checking out school seems to be a very important psychological step in his awareness, (at a sub-conscious level at least) that he will soon be well.. wonder what else he will start to check out as he continues to improve.. Our very best... Chris Last edited on Mon Jan 23rd, 2006 22:23 by |
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Aussie Barb Research Team
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 from Barney and Barb |
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robyno Member in Phase 3
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Thanks for the cartoons, Chris and Barb. Matt will love them once he is on-line himself. Movies are definitely high on his list of things to do when he is better, along with reading, swimming, running (he said today that he is even looking forward to getting a stitch from running too much), footy, hanging out with friends........He says that everything will be 10 times as good as it was before - I don't think anyone will argue with him about that! Matt is having a herx-free weekend before we increase his abx tomorrow. He is a bit grumpy today after having a poor sleep last night, but everyone is entitled to an off day, especially when you have a lot to put up with. But generally his spirits are high. Matt's brother, David, has only one more week of school holidays left, so that will be a crunch time for him - Matt has loved having him around so much. Matt is still "practising" his reading every day and little by little he is able to read more without it hurting too much. It will take a while before he is reading novels again, but it will happen. I often wonder how many kids out there in Special Ed classes who are having reading problems actually have Th1 disease to varying degrees.............I am sure it would be significant. These kids would know how to read but don't because it just hurts. It really makes me want to scream, throw things, cry, etc etc etc. How can they get help when doctors and teachers on the whole just don't know about it? I guess Matt is not the only one who is grumpy today - maybe I should go lie down as well! Regards, Robyn |
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robyno Member in Phase 3
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Matt is moving along nicely. We will be getting a prescription from our Dr for another antibiotic next week so that should be interesting. Matt read two (small) paragraphs of one of his books yesterday - that's the most so far and he was very pleased with himself. Newspaper headlines are a piece of cake now so he doesn't even bother with those anymore. Matt wore out his CD/MP3 player so we went for a short road trip yesterday to get him a new one. It is "seriously cool" - I also hope that it lasts longer than the last one. His room if definitely wired for sound these days! David went back to school today and didn't get any sympathy from his brother when he dared complain about it! I know one little boy who would just love to be there........Not to worry - Matt is too busy getting well at the moment to worry too much about school. Regards, Robyn |
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robyno Member in Phase 3
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We see our Dr tomorrow to get our next antibiotic prescription, which is pretty exciting. It is very obvious now that Matt is doing much better with his energy levels and even his voice is only hoarse when he is herxing strongly. Matt's sister arrived from Adelaide today and was very impressed with how well he is doing, which gave us all a lift. Matt has started reading ME a book now, instead of the other way around. He can read a page at a time without it hurting at all now and is looking forward to seeing how much that will improve over the course of the week. He still gets very down every now and again (he is just soooo sick of that headache) but not as often as he is entitled to! We have voted the headache #1 on the list of symptoms we will most like to see disappear! Regards, Robyn |
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oliviat Health Professional
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How totally exciting that Matt is starting. My 15 year old nephew Michael has just satrted phase two. He said to tell Matt he is now on the way to recovery. It may be slow, but it is coming. |
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robyno Member in Phase 3
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Thanks Marie - Michael is very much in our thoughts. I am sure Matt will start emailing him as soon as he can tolerate a screen again. He often says he would love to talk to Michael.....maybe I should arrange with Dawn for Matt to call him on the weekend (he can handle phones!). We have had a great couple of weeks, probably the best since Matt has been sick. He has just about finished his current combination of abx and is about to start on the next. He read over 6 pages of his book today before it started to hurt and is very much looking forward to our celebratory box of chocolates when he manages a whole chapter. He gets crapped off about being inside so much, but other that that he is still pretty cheerful. He calls his friends to catch up on the news from school and is enjoying some great novels on audio tapes. He will be a very well-read young man by the time he coes through the MP! Regards, Robyn |
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BARNEY Moderator
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Robyn/Matt, It just thrills me to my very soul to hear how well Matt is doing and how much he is enjoying doing some of the things his illness did not allow. Matt, I am with you, I want to go outside so bad, but if I go out after sundown it sort of takes care of that feeling for a few days till I can go out again. I had this (I guess you could call it a daydream) of flinging the doors open and going out without all of the MP garb and going any place I want to....I know that day is coming when I can really do it....so....until then Matt.......we will figure out things to do inside until the enemy (the sun) goes down. Here's a toast........to the day the sun is not longer our enemy. HANG IN THERE (ADOPTED) GRANDSON, YOU AND I BOTH ARE GOING TO MAKE IT ALONG WITH MICHAEL!!!!!!!!! LUV, BARNEY |
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robyno Member in Phase 3
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Thanks Barney - I read your message out to Matt and he gave you a big grin. Well, Matt earnt his box of chocolates almost a week ago and on the weekend he actually finished the book (>200 pages!!). His pb for reading in one sitting is 24 pages and he adds to that every day. So I think we are just about ready to give reading a big tick on our list of symptoms. Matt is handling his next abx pretty well so far, touch wood. His tic does not seem to be herxing this time, but his fatigue certainly is. His periods of herxing aren't quite as long either and he says that his background headache (that horrible never-ending headache that started in June 2004) is not quite as bad. He is certainly progressing faster than we thought he would - I probably shouldn't say that as I don't want to jinx us, but ...... I was in bed most of the day yesterday with a migraine. I feel very humble when I think that that is how many MPers feel every day and here I was this morning waking up feeling OK again. I can't believe what you guys go through. Best wishes, Robyn |
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CJ Member in Phase 3
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It is so Wonderful to read of Matt's progress!!! He has come so far. You're doing GREAT Matt! CJ |
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robyno Member in Phase 3
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Matt has read three books now but still can't read as much as he would like in one go (pb stands at 34 pages) so he refuses to tick reading off his list of symptoms just yet. He tried the TV for a couple of minutes but it still hurts too much. But a couple of minutes is still a lot more than he has been able to tolerate in well over a year now. His iPod screen is his next big challenge - it will be great when he doesn't have to ask his brother to find things on it for him. Matt was thrilled to be able to talk to Michael on the phone one day last week. They will be able to compare notes and grumble to each other about being inside. It will do them both good. We have just ramped up one of Matt's abx so he is in for a couple of rough days. Otherwise, he is doing fine. Regards, Robyn |
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BARNEY Moderator
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It thrills me to see that Matt and Michael are going to be able to talk to each other. Comparing notes for two mates/guys will be the 'icing on the cake'. HANG IN THERE, WE WILL MAKE IT!!!!!!!!BARNEY |
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robyno Member in Phase 3
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Matt survived his abx ramp-up OK and will be ready to go again on Wednesday. He seems to have plateaued somewhat with his reading, though is in the middle of a new novel by one of his favourite authors (Gareth Nix). He gets a bit tired after about 15 pages or so and has to stop. His TV watching has staggered around the 5-6 min mark. I guess it will take off again once he starts killing more bugs in the right places.......it is curious that the improvements speed up and then slow down a bit. Matt is off to the dentist tomorrow as one of his baby teeth is coming out in pieces, rather than as a whole tooth. Teeth fractures are apparently not uncommon for people with Th1 disease so that is another symptom to add to the list. His new teeth will be nice and strong now that he is on MP. Regards, Robyn |
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robyno Member in Phase 3
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The dentist saw no problems with Matt's teeth - apparently 10% of kids lose their teeth in pieces anyway so it is not a problem. The rest of the tooth has fallen out now so all is well. Matt has started reading a novel for school this week. It is a bit baby-ish according to Matt (compared to what he has been listening to over the past year!) but OK. He then has to write an essay on it and hand it in for marking. He is very excited to be doing some school work again - even if I have to type it for him, he is determined to get it in. Matt also logged on to his email for a couple of minutes this week. He found typing a bit too hard but could at least look at the screen for a couple of minutes without too much trouble. So he is still progressing well. Matt is anticipating a good week because he is over the worst of the herxing for the current lot of abx. He is very cheerful and enjoying being able to do more things. Regards, Robyn |
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BARNEY Moderator
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Robyn/Matt, HANG IN THERE, WE WILL MAKE IT!!!!! GRANDMA BARNEY |
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robyno Member in Phase 3
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Thanks for the cartwheels, Barney - Matt can take a look at them now and he is very impressed. Matt has had a good week with Grandma Bett staying with us for a couple of weeks. This week his big news is that the periods of blurred vision that he gets every morning as regular as clock-work are starting to improve. That is HUGE and something else to add to the list of improvements. His reading and TV watching are still about the same as they've been for the past couple of weeks but we are not pushing it. Everything will come together eventually, we just have to take it slowly...... Matt is looking forward to the end of daylight saving and the start of some cooler weather so that he can enjoy some fresh air before bed and not look such a doofus when he goes out in his balaclava, etc. He is expecting to feel well enough to see his footy team play a few games later in the year as well. Regards, Robyn |
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robyno Member in Phase 3
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Sorry it has been so long between posts. All is well here and Matt continues to improve. The weather in Canberra is unseasonably cold at the moment and Matt and I are shivering because our heating is not working and we are having trouble getting someone out to fix it. Never mind - it's only a small thing in the grand scheme..... Matt is in the middle of his worst herx days after his abx ramp-up, but still pretty cheerful. His tic is definitely improving (by 60%, according to Matt, so the pains that produce the tic have really slowed down). He can now write pretty well and is working on his school assignment on his better days. TV is still stuck on 6 min (he is watching Carlton's big win last weekend in 6 min bursts!). He spends lots of time on the phone to his friends and a lot less time in his room. It is so lovely to see him getting his life back... Cheers, Robyn |
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Jeannine Board Staff 
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Hi Matt and Robyn, I love reading your posts! It gives me so much hope! I am so glad your son is getting his life back.....I am rooting for you Matt! Go Matt Go ....Wish I had cart wheels like Barney....Go Matt Go!...... Jeannine |
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robyno Member in Phase 3
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Thanks for your good wishes, Jeannine! We are having a good Easter break so far. A few of Matt's friends called in to see him today and he managed his visitors very well. We also upped his abx after lunch so the herx came on cue, at about 4.30 this afternoon. It will be a "good one" according to Matt, but not unbearable. Matt started drawing this week so that is something else to add to the list. He is also sure that his "pulses" (ie tic) are still improving - about 75% better at this stage. It will be so nice to see the back of those..... I have had a nice afternoon catching up on MP.com and printing off a lot of lovely articles on vitamin D metabolism, so I am heading to bed for a read. The Easter break has come just in time...... Happy Easter to everyone, Robyn |
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robyno Member in Phase 3
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Matt's progress is slow but steady. He sent me out to the letterbox for the junk mail this afternoon - it is so nice seeing him pouring over it working out what he is going to buy once he's better. One of those portable DVD players seems high on his list as he can list every store that sells them, how much they are going for and what features you get for your money. It wasn't so long ago that he couldn't even look at the catalogues! We ramped up his abx again today so the herx will kick in at any moment. He gets a bit quiet when that happens and spends more time in bed, but after the first couple of doses he is more cheerful and lively again so it's not too bad. He has come a long way since starting MP, though we know he has a long way yet still to go. We would all love to be at the LA conference and will be anxiously awaiting the DVDs. It's nice to think that some time in the not-too-distant future this family can make a trip like that again. I hope there will be more conferences! Regards, Robyn |
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robyno Member in Phase 3
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Big news here this weekend - Matt's tic (ie his involuntary "pulses") are just about gone! A couple of weeks ago Matt measured the time interval between pulses at 15 min (not so long ago they were every 30 sec or so) and last Thursday he only counted about a dozen for the entire day. Today the count was about six - it won't be long before he goes a whole day without a pulse and then the celebrations will start! It has been very scarey watching Matt develop the quite violent myoclonus about 18 mo ago, and then have it develop into the head-holding scream, and then the very loud grunts, and now the soft grunts - it is hard to comprehend that they are almost gone now, but they are!! It is such a relief. I read in Dawn and Michael's post that Michael is in good spirits and taking an interest in his appearance again. Matt is in amazingly good spirits as well - the boys know that they are getting better and it is wonderful to watch. Matt has started another assignment (story-writing, which he loves) and is doing one of his last year's Maths assignments. He seems to be enjoying it. I was silly enough to tell his teacher that he found the last book on his reading list a bit little kiddish so she has sent him home Shakespeare's "Merchant of Venice"!! He is not impressed and is taking a ribbing from his brother. It might be a good idea to track down the audio version of the one! That's our news for now - I will be sure to report when we can tick off those awful "pulses" just as soon as it happens. Regards, Robyn |
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Frans Member in Phase 2 
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Robyn, This is absolutely great news ! Congratulations ! Sincerely, Frans |
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BARNEY Moderator
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Robyn/Matt, My heart almost leaps out of my chest for you with all your improvement. Am so very happy for you. Keep up the good work. HANG IN THERE, WE WILL MAKE IT!!!! LUV, GRANDMA BARNEY |
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Jimbbb Member 
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Robyn/Matt, I (we all) have long awaited the day when we see the post that starts: "Hi, this is Matt ....." ... maybe sooner than we think, eh? jim |
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robyno Member in Phase 3
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Thanks Frans, Barney and Jim - yes, Matt is on a roll. His tic is now at 1-2 per day (yes, per DAY, not per minute as it has been!) and only then when he is doing something difficult like watching TV for a few minutes. So we have declared those null and void and ticked the "pulses" off his symptom list. It is Mothers' Day here this weekend too, so tonight we are all going to the local Club for dinner as soon as it gets dark. It will be the first time in ~18 months that the family has been out for a meal. Grandma Bett (John's Mum) is visiting as well so it will be a very special Mothers' Day celebration - Matt is so excited that his only distinguishing feature will be his dark glasses, and lots of people wear dark glasses these days so no-one should give him a second glance (that horrid tic of his used to come in for some strange stares). We have rung our order in ahead of time so that we can be there and back inside an hour - Matt will be wiped out by the time he gets home, but he is determined to go. It will be a nice, normal thing to do. The other good news is that Matt thinks his background headache is starting to improve now - the other HUGE symptom. So now we can start to track its demise along with the others! He is also more interested in doing some school work so we will ramp that up slowly from here. The only thing left to say is "Thank God for the Marshall Protocol"!!! And Happy Mothers' Day to all! Regards, Robyn |
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BARNEY Moderator
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It is so good to hear that there is a big festivity going on for your family and that Matt is able to join you all in it. HAPPY MOTHER'S DAY to Robyn and John's mum. and....HAPPY OUTING DAY to Matt. HANG IN THERE, WE WILL MAKE IT!!!(Grandma)BARNEY |
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robyno Member in Phase 3
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We have had a pretty good week. Matt's "pulse" count for last week has been just two for the entire week! We all enjoyed our Mothers' Day outing last weekend and no-one gave Matt a second glance. We were home within an hour and Matt went straight to bed afterwards but he was fine the next day. We have also visited the Hi Fi shop the last two Friday nights. Matt likes checking out all the lastest electronic devices - junk mail in the flesh, I suppose! That is another normal thing he can do now even if it is for just 20 min or so. Matt is also asking for some more school work so I am off to school this week to sort out some more work for him. He hasn't made much progress with his Shakespeare play so far but is enjoying keeping a journal (his writing is fine now) and doing a bit of story writing. He can last 15-20 min at tasks like that but that will improve. It's an awful lot better that where he was at a few months ago. Regards, Robyn |
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BARNEY Moderator
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Robyn, That is such wonderful news!!! Matt just keeps on improving, even tho it seems small...it is so big for him. You are such a good Mom!! HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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robyno Member in Phase 3
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Sorry to be a bit slow this week with my posts. Matt is doing fine - he can even watch his 7 min of TV now without a "pulse" so they seem to have disappeared completely. We are off to our Dr this afternoon and Matt can't wait to see if he will notice the absence of his pulses. I hope for his sake he notices as Matt will give him a hard time if he doesn't! The school has organised a stack of work for Matt to do. He took a big gulp when he saw it all but I tried to reassure him that it was there for when he felt like it and not before. We'll see how he goes. He is not up to terribly much yet, though he is enjoying writing stories for his English teacher. He is a budding Harlan Coben (Matt just loves his books and all the wise cracks his characters make!) so I hope his English teacher will forgive him his strange story lines and attempts at humorous one-liners! I suppose it is not surprising that he hasn't exactly taken to Shakespeare! I think that is about all our news for this week. Regards, Robyn |
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robyno Member in Phase 3
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We have had a pretty good week. Matt is herxing at the moment as we upped his abx yesterday, but he is managing it well. Matt has enjoyed a visit from his cousin, Travis, from Melbourne this weekend. Travis hadn't seen him for ~18 months and was thrilled to see how much better he is looking now. We have had a lot of laughs this weekend. We saw our Dr this week and he was very pleased with Matt's progress. Matt didn't give him much of a chance to notice the absence of his pulses before blurting out "they're gone"! I know one doctor in Canberra who is very impressed with the Marshall Protocol!! Having said that he pulsed in the car on the way home, but only once. I think that shows us just how difficult Matt still finds the car and there is no way we will be going anywhere while that is the case. We need to kill a few more bugs first. Matt says hello to everyone. Me too, Robyn  |
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jrfoutin Research Team 
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Wouldn't be the first time I had thought some symptom/Herx of mine was gone, and then came back so soon after I felt maybe I had been to quick to state it as such. But even still, it just seems like they finally do just go away and then they are really gone. They just had to do one or two last curtain calls before bowing out. These last blips on the radar don't hit with as much intensity or frequency either. Glad to see such wonderful progress for your family. So wonderful!--Janet |
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robyno Member in Phase 3
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Thanks Janet. No pulses at all this week, even while riding in the car or watching TV for a few minutes, so with any luck they are gone for good now. His headache continues to improve slowly. Matt and David kicked the footy in the back yard after dark tonight - was only for 5 min or so but it has been one of Matt's ambitions for a long time now and he has done it. The pair of them kick their soft footy about the house now as well, something I always used to growl at them for. But not any more - they can break what they like (within reason, of course!)! Won't be long before we are ringing the coach to tell him that Matt is about to make a come back! We don't have much more to report. Another English assignment was typed up today and Matt expects to do his exam this week some time. He can tackle a few other subjects next semester. His Poppy (my Dad) is coming to visit for a couple of weeks on Friday so Matt will enjoy his company while the rest of us are at school and work. That's about it for this week. Regards, Robyn |
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robyno Member in Phase 3
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No more pulses this week, either.............they don't even get a mention any more! Matt thinks his headache is improving steadily now and even commented that the Panadol actually helps - I guess that means it wasn't making much difference until now. So that is great news. Matt is over the worst of his herx days for the current abx combination/doses so I am expecting him to make some more in-roads on his school work this week. He can still only last 20 min or so at a time concentrating on anything and is a bit frustrated with himself that he has forgotten so much, but all he really needs is practice. We just have to be patient and as his fatigue and headache improve he will be able to do more. He gets a big kick out of finishing something and moving on to the next exercise or assignment. Regards, Robyn |
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robyno Member in Phase 3
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We are almost through the current antibiotic combination and are looking forward to starting a new abx in a couple of weeks or so. Matt's herxing is not as strong as it was at the lower doses so it will be good to move on and try a new one. David handed in Matt's English exam today so he is anxiously awaiting the results. He is looking forward to doing more subjects next semester. It was a wonderful achievement to get even one subject completed in the first semester this year - six months ago I would not have predicted that! Matt looks forward to sitting on the deck each day when it gets dark to get some fresh air. One night last week I couldn't find him - he was at the back fence talking to the kids next door and their dog. I don't think the neighbours were getting much of a word in - it was lovely seeing him do kid things again. It's been a long time.... We have lots of family visiting at the moment so Matt has lots of company. David is on holidays as well, which he enjoys very much. That's our news for this week. Sorry I am a bit late. Cheers, Robyn |
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robyno Member in Phase 3
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Mattie has had a great week with visits from his Poppy and aunt and then his sister flew in from Adelaide for a few days. He has had lots of laughs and everyone is thrilled with how well he is looking. My Dad in particular had an awful lot of trouble coping with his tic (didn't we all?) and was much relieved to see that it was gone and that Matt was looking so well. Matt was also over the moon with the "A" he got for English (he got this beautiful letter from his English teacher, whom he has never met - the sort that a mother wants to keep forever!). It has given him a real boost and he is looking forward to seeing how many subjects he can get through next semester. To add to the excitment the school sent home the great long list of subjects for year 9 (starting Feb 07, so we think that Matt stands a very good chance of joining his classes by then - I know, we'll have to see how he goes, but it is very possible!!). Naturally, Matt wants to do the lot so we have had to explain that that is not possible as there are not that many hours in a school day (he is even arguing with us over that one!). So he has made list after list and studied the handbook (isn't it wonderful that he can actually read the handbook?? it wasn't that long ago that reading was not something he could even contemplate!) and we are no closer to deciding what he should do than we were before we got the list! Never mind, it will come together. This whole subject-picking exercise has reminded me of something Matt has said quite a few times since starting MP and feeling himself getting well again - "Mum, when I'm better everything will be 10 times better than it was before". I am sure there are a few MPers out there who know exactly what he means. On that note I will close for now. Can't wait for that next antibiotic combination, which will start in about 10 days time!! Regards, Robyn |
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BARNEY Moderator
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CONGRATULATIONS MATT!!! HANG IN THERE, WE WILL MAKE IT!!!GRANDMA BARNEY |
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robyno Member in Phase 3
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We are still progressing nicely here. Matt's light sensitivity is starting to decrease a little - he has actually noticed how dark his room is now, though he still manages to read in light that I would have trouble finding the book. He is in great spirits and very much looking forward to his next antibiotic, which he will take for the first time on Thursday. Matt only spends about half of his waking hours in bed now. Once his worst herx days are behind him he feels more like doing some school work. He has forgotten a lot of his maths but it is all gradually coming back to him. At least he now feels like doing some work and it is great to see him working at his desk. He will get there, little by little. That's it for this week. Next week I will be able to report how he is coping with his new antibiotic - it is not worrying him at all. He knows that he has to herx to get better, and that's OK. Regards, Robyn |
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robyno Member in Phase 3
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Today is Day 6 of Matt's new antibiotic combination (Phase 2, having just finished his modified Phase 2). The herx started towards the end of Day 2 and continued through to the middle of Day 5, when it started to wane. Matt woke up this morning saying that the herx was gone and that his headache felt like it had improved a bit ie was a bit better than it was before he started herxing. Great news! The latest herx is a bit different from those he had become accustomed to - he was much more tired than usual and the herx lasted a lot longer. But it was bearable and he only seemed to need the extra Benicar on Day 3. We will see what the next cycle brings. The other good news this week is that Matt's blurred/double vision that he has been waking up to each morning for the last 18 mo or so seems to have petered out. In the last week it stared coming later and not lasting for as long and we have even had a couple of days without it. The last time he couldn't see properly was last Sunday morning for about 15 min - with any luck, that will be the last of it. I have been looking back over the records trying to map out when each of Matt's symptoms has dissappeared and working out what is left to go: -3 weeks into Ph. 1 - nose bleeds stopped -2 mo into MP (10 days into mod. Ph. 2) - was able to have a haircut -5 mo into MP - was reading again -6 mo into MP - was writing again -and noticed that his tic was starting to become less frequent -8 mo into MP - we declared his tic gone -10 mo into MP (at the end of mod. Ph. 2) - blurred / double vision gone (touch wood!) What strikes me in all that is just how quickly the improvements started coming and they just keep coming. So what is left? -The headache is still there, though I think it will be the last to go as it was the first to come. I imagine that it will peter out - even a few hours without it is something to really look forward to. It is definitely not as bad as it was when he started MP. -Matt still has problems with watching TV and using the computer (the movement is what seems to bother him the most) -and riding in a car (movement again) -and he still sleeps sitting up. -He is still tired -and very light sensitive, but the list of symptoms that we have ticked off is now longer than the one we have left, and all those have shown improvement anyway. The MP is working beautifully....... Regards, Robyn |
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robyno Member in Phase 3
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The blurred vision has not returned, thankfully, so that seems to have gone for sure. Great news. Matt has enjoyed 6 herx-free days. He has started exercising and even invited a very good school friend over for an hour this afternoon. John, David and I get the feeling that he has turned a corner.........we'll see what happens over the next antibiotic cycle. Regards, Robyn |
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robyno Member in Phase 3
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Matt continues to enjoy Phase 2 - so far it is easier than the modified Phase 2 that he has just completed and he has about 6 herx-free days in a row. On those days we can see just how much he has improved. Matt is exercising regularly with a set of weights we got in the sports shop on Friday night. Right now they are his prize possession and definitely cool. He keeps checking out his calf muscles and telling us how big they are getting now! He kicked the footy 18 times last night (those calf muscles are being put to good use!) and really enjoyed that. He also spent a short time on the computer, which is a start. His TV watching is up to ~20 min at a time. So it is all good. Matt has started to nag about wanting to go back to school. We have said that as soon as he thinks he could last two hours at school then he can go for an afternoon - he just has to tell us when he is ready. He thought for a bit and said that maybe not just yet, but soon..... I hope he's right. We have a tutor lined up to come to our house just as soon as he could last an hour at his books - he's not quite there yet either, but it won't be long. At the moment he does ~30 min of work a couple of times a day on non-herx days, but that is improving all the time. He knows he still has a fair way to go. We just have to reassure him that it is all OK and not to worry too much - he'll catch up fast enough when he's well. That's our news for this week. Regards, Robyn see Matt Baby file link |
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robyno Member in Phase 3
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We don't have much news this week. We have worked out that Matt has developed a "sneeze herx" so we think he must be cleaning out his sinuses. His light sensitivity is improving greatly, though it still has a long way to go. He is over his herx for his current abx cycle and is looking forward to doing more exercise and schoolwork over the next few days. Hopefully it won't be too much longer before we can get a tutor to work with him for an hour or so. Matt has his birthday to look forward to in a week or so and is planning to have a few friends over to help him celebrate. It will be quite a contrast to his last birthday, just before he started on MP! We will take plenty of photos! Regards, Robyn |
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robyno Member in Phase 3
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HAPPY 14th BIRTHDAY MATT!! On Thursday Matt will be having a tutor come to our house to take him through some school work, which is another milestone. His energy levels have definitely increased markedly over the last few weeks - he even helped me unpack the groceries from the car last Friday night while I stood there with my mouth open. I can't remember the last time he did that. So it's all good news here. Regards, Robyn |
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ElizaH Member 
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Dear Matt HAPPY BIRTHDAY It was great to hear how well and strong you sounded when we spoke yesterday. I look forward to copying you. Love from ElizaH |
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Frans Member in Phase 2
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HAPPY BIRTHDAY MATT !! |
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BARNEY Moderator
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HAPPY BIRTHDAY MATT!!!!!!!!! (Just got my computer back on line, hope you have a wonderful birthday celebration....you deserve it). HANG IN THERE, WE WILL MAKE IT!!!! GRANDMA BARNEY |
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wrotek Member in Phase 3 
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robyno Member in Phase 3
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Hi this is Matt. Thanks for all the happy birthday wishes. how are you all doing? I'm doing a bit better than I thought I would. Keep on keeping on  A big thanks to Doctor Marshall, Aussie Barb, and Barney. THANKS FOR EVERYTHING.Matt |
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BARNEY Moderator
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Matt........is that really you? Oh, Matt, that is fabulous. I am so happy for you and for the hope that your family must feel. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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Grace Member in Phase 3
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Matt, So great to hear from YOU.!!!!!!!!! Happy Birthday!!!!!!!!!!! Grace |
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robyno Member in Phase 3
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Thanks everyone for your birthday wishes. Matt had a great party last Sunday night. He invited 5 friends over for a BBQ - he arranged everything, including the menu (which his Mum and Dad cooked!), and told the rest of us to make ourselves scarce. There were lots of laughs coming from the family room and he managed to last for an hour and a half before we took his friends home. He was a very tired boy afterwards! It's interesting that Matt and his friends have grown up quite a bit without us noticing! Matt has definitely lost a few inches in height as a few of his friends who were always about the same size are now a few inches taller. Never mind, he will catch up with all that weight training and food he is eating now (Dawn - we must have a talk about food again and I'll tell you Matt's favourite things to eat to see if Michael might be tempted.......). The other thing that Matt is excited about is the invisible zinc cream that Joyce has discovered (thanks Joyce!). We have some now so Matt thinks he will try it out on the weekend when he stops herxing - will report how he goes in the zinc cream thread. Matt's tutor has been a great success and Matt is starting to do more school work on the days he is not herxing. So all in all things are definitely looking up. Regards, Robyn PS Apologies for not posting sooner - it is very difficult to get on the computer of a night at our place right now (we definitely need another one for the boys!) |
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robyno Member in Phase 3
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Matt seems to be improving steadily since starting Phase 2. Every time he stops herxing we can see that he is a bit less fatigued than the time before and his headache is much better than it was. This week he even cut out his nightly paracetamol tablet so he is down to two a day. It will be interesting to see if he asks for panadol tonight, on a herx day. Matt has also started playing table tennis after dark each evening, something that he hasn't done for the past couple of years. Right now he is struggling with swollen gums that we are a bit worried about. He also has a rash on his neck that we can't account for. They are probably both just herxes, like everything else...... Other than that all is well. Regards, Robyn |
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BARNEY Moderator
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Robyn (& Matt), So good to hear that you are doing so well Matt and Robyn it's great to see that you catch on to things so easily....I wish everyone considered everything a herx like you do. We are going to make it Matt. I actually was able to take Granny shopping yesterday, pick up her pills, go to her house for a 2 1/2 hr nap and back out again to finish our shopping at the other grocery about 5pm and I was not sick, achey....just a little tired. Also, went to bed early since the electric was out due to a storm....what else is there to do without electric....but get the much needed rest we need with MP. HANG IN THERE, WE WILL MAKE IT!!! BARNEY |
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robyno Member in Phase 3
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Apologies to all our friends for being so long in posting on this thread ........... sometimes weekends just aren't long enough! Our big news is that Matt is going to school for an afternoon next Wed for the first time in a year (yes, it has been a year since Matt started MP!)!!! He is definitely ready and very excited at the prospect. We'll see how it goes - there are only two weeks before the end-of-term break so if he can go a few times before end of term we'll have some idea how much he might be able to manage for the final term of the school year. The way he is steadily improving on Phase 2 gives us a lot of hope that he will be able to catch up quite a bit in what is left of Year 8. We'll just have to see. Matt said that a year ago he would listen to about 11 hours of audio books in a day (ie in bed) and now it's down to about 4 hrs - the rest of the time he is doing homework, working with his tutor, exercising, watching TV (he can manage almost an hour now), messing around on the computer (~ 25 min at a time), playing table tennis after dark, drawing, eating, listening to his MP3 player.......I'm sure I have missed a few things. He even gets out and about occasionally now, using the invisible zinc cream to cover his face, neck and hands. Tomorrow he'll come with us to watch David play footy and sit with his friends and generally be one of the boys again. So the news is all good around here. Regards, Robyn |
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jrfoutin Research Team
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That is so fantastic! Congratulations! |
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robyno Member in Phase 3
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Matt survived his afternoon at school and will go again next Wed. He was so excited beforehand he was shaking! Apparently he did a lot of walking around checking the place out and seeing what was where, so next week it should be a bit easier as he will stay in one place and get on with his work. He just loved being a normal kid for a while, and nobody gave him a hard time about the glasses. Last night was another first in that Matt went to the video shop to hire some DVDs. He can watch about an hour and a half now so he can just about see a movie in one or two sittings. Great progress! His ambition is to be able to go to the movies with his sister, Claudia, when she comes to visit in a few weeks time. Next week we hope to head down to our beach-house for the first time in a year - won't that be something! Matt's improvement is steady and continuing and life is pretty good (and getting better all the time). Regards, Robyn |
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BARNEY Moderator
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Matt & Robyn, It is so good to hear that Matt enjoyed and endured a bit of time of school. I know that made his day because I know how it makes me feel when I accomplish anything I have not been able to do. As a mother, I also know how your heart must be leaping for joy, Robyn, as you watch Matt recovering on MP. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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robyno Member in Phase 3
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Matt has had another good week. He went to school again on Wed afternoon and handled it well, though he needed a sleep when he got home. He spent ~40 min on the computer at school researching a science assignment and was very pleased with himself. It is so nice to see him enjoying a TV show these days and being able to use the computer a bit now. Late this afternoon we are off to our beach house for the first time in a year so we'll be off the air for the next 10 days or so. We have been to the dive shop for wet suit, "booties" (matt just hates that name!), gloves and the most fantastic hat I've come across - it is wide brim all around, waterproof, has a covering for the ears and it does up under the chin so his glasses will be nice and secure (the brand is "Ocean Earth"). Add in a little bit of invisible zinc and Matt is also set for a romp in the surf. He's more than a little bit excited! Has anyone come across any suitable swimming goggles? In the summer it would be great to be able to take him to our local pool after dark, but the lights at these places are very bright & I don't think he would be able to handle it. Matt is also managing about an hour of exercise (not continuous!) on non-herx days now, and this week that has included 60 sit-ups in a row, without stopping! It wasn't so long ago that he couldn't even lie flat! I wish I could do that........ Now we just have to get thru the almost 3 hr car drive with lots of stops and an audio book in the CD drive. Will have lots to report when we get back home. Until then..... Regards, Robyn OCEAN EARTH << click  |
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BARNEY Moderator
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WOW MATT........YOU GO!!!!!!!!!! HANG IN THERE, WE WILL MAKE IT!!!BARNEY ps I am able to do a lot more also Matt....isn't it just toooo good to be true? |
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robyno Member in Phase 3
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We had a wonderful 9-day holiday at our beach-house. Matt handled the car trip really well - we stopped 3 times each way but not for as long as I remember a year ago. We went out for dinner twice (Matt just loves the wood-fired pizzas at our favourite Tarthra restaurant) and Matt giggled his way through most of our outings. As a family it is wonderful to have our trips down the coast re-instated. It is very relaxing for all of us and John and I get to spend time working in the garden and getting lots of exercise. The wet suit, gloves, booties and hat (Barb found the EXACT hat above - it's a beauty!) worked a treat and Matt went swimming twice once his herx days had finished. David nearly froze to death swimming along side him but they didn't stay in the water for very long. The invisible zinc cream seemed to work very well as per usual and didn't wash off easily in the water (Matt had to really work at it in the shower afterwards to get it off). It is interesting that Matt can go outside now at dusk, about 10 min before it gets really dark. He doesn't even wear his glasses then - he just looks all around and comments how beautiful the world is. I really think this illness has changed him forever - there's no way he'll take anytrhing for granted again! Next week he has two days of school and two days of tutoring all lined up. It will be a big week. He is still doing lots of exercise, even on his herx days. Regards, Robyn |
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robyno Member in Phase 3
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What a busy week Matt has had! His herxing had disappeared by Monday morning so he had his two afternoons at school and his two sessions with his tutor in between. On Friday afternoon he actually joined a couple of his classes - everyone made him feel welcome and he had lots of fun. He'll start doing that more and more from here. And last night Matt even went to the movies with one of his mates!! It wasn't a long movie and Matt said that he closed his eyes for about 10 min in the middle, but he made it and had a great time! He checked out that the popcorn didn't have any margarine on it so he was able to enjoy a bucket of popcorn as well (while John, David and I sat at home watching the clock!). Just something else to enjoy now............. It will be a quieter week this week as Matt will be herxing Mon-Wed, but he'll get to school by the end of the week and who knows what the weekend will bring! Regards, Robyn |
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robyno Member in Phase 3
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Matt had a much quieter week. His flare in symptoms made him very tired and he didn't exert himself too much Mon-Wed. He is able to watch TV now and play the playstation so his list of things to do when he is tired has increased considerably. He still loves his audio books but doesn't have to spend so much time in his room. He'll also manage some exercise but doesn't push himself quite so hard. Matt loved his afternoon at school on Friday and will go again tomorrow afternoon. He seems full of beans once his symptoms settle down though an outing to the shops for a couple of hours this afternoon wiped him out for a while. The good thing is that now he only takes and hour or two to recover once he gets home so we notice his improvements all the time. He is very cross with the onset of daylight saving - it puts an end to his games of table tennis with his brother before dinner and he is a bit too tired after dinner. We are scratching our heads to figure out where to put the table inside..... That's our news for this week, Regards, Robyn PS A message for Melinda (ElizaH's niece) - we got the swim goggles that you suggested this afternoon and will try them out at the local pool one night once summer comes - thanks for that! |
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BARNEY Moderator
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Matt/Robyn, I am not quite sure who is the most knowledgable...Matt or Robyn. I am so proud of you both for doing MP so great and for Matt knowing when he has to quit and rest. So happy for him to attend school again and the fact that you were all able to go to your holiday home again. Robyn, please convey my thanks to John and David as they are so patient with the MP patient (Matt) and have to take a back seat a lot to this miserable disease and for the extra love they show their son/brother. All of you, take good care of you. HANG IN THERE, WE WILL MAKE IT!!!! GRANDMA BARNEY |
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ElizaH Member
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Dear Matt and Robyn You are good news these days. I'll pass your thanks on. Melinda is most interested in your progress. I think daylight 'saving' is a total blot too. More like 'darkness robbery'. Let's go neutral and call it 'summer time'. Keep up the good work. love ElizaH Last edited on Mon Oct 30th, 2006 06:32 by ElizaH |
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robyno Member in Phase 3
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Wed-Fri this week Matt's immune symptoms kicked in so he had another quiet week. He fell off the deck on Tuesday night while horsing around with David - he landed on his feet but it was a bit of a jolt to his poor head as the deck is a metre or so off the ground. He was still feeling the effects the next morning so it is no wonder that he hasn't tried to do any running yet. I'm still amazed that he can do so many exercises but sit-ups and stretches don't seem to jolt his head and he can handle it. He occasionally gets a bit dizzy if he over-does the exercises but he won't be talked out of them. I guess we have to trust his instincts. I forgot to say a few weeks ago that we measured his height and he had grown 4 cm since the end of July. His weight is still about 40 kg though, so it's like he is being stretched! I think the exercises are his attempt to put on a bit of muscle.... Last night was another first - we went for a walk around the block all together! We took the shortest block but Matt managed really well and every block we walk is up hill on the way back. Those exercises are paying off! I'm sure we will be doing a lot of walks in the dark as the summer progresses. Matt has three afternoons of school planned for this week - it seems like one week in three his symptoms are not flaring on weekdays so he is determined to make the most of them and get to school as much as possible. He is working pretty well on his assignments at home and is enjoying being able to do them, especially on the computer. He has started giving his brother advice on how to make his powerpoint presentations more interesting - eg wouldn't he like Matt to make his words go up in flames or wouldn't he like to fire a cannon in the top righthand corner? He's beginning to sound more like the Mattie of old.......! Enough from us for this week, Regards, Robyn |
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Aussie Barb Research Team
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Robyn Thank you.. so good to see Matts progress each week as you post.. This FAQ may be helpful: Are there any Guidelines on Exercise & the Marshall Protocol? all best, Barb ... go get 'em..  |
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robyno Member in Phase 3
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Thanks Barb. It was great to be able to talk to Trevor with Matt about his progress and meds last week. Trevor suggested that Matt shouldn't do quite so much exercising all at the one time, particularly exercises like sit-ups, which are pretty strenuous. Matt took it on board and is doing a bit less, but he enjoys his exercises so much that I doubt that he will cut back very much. He is keeping quite an eye on his muscles (lack thereof!) and is determined to build them up. We'll keep nagging...... Trevor also told Matt that if Dr agrees he can chew half a Benicar tablet when he feels giddy or nauseated or his immunopathology is particulary tough. Matt is still taking only 20 mg Benicar q6h so he has plenty of scope to take more than he is taking. We'll see how he goes and try to get him to have extra with his next cycle. Matt is still enjoying his afternoons at school when his immunopathology allows. Last Friday when I asked him how it went he replied that he had had so much fun. He made a clay elephant in his art class and had a ball. Matt's school is more concerned with him joining his classes and interacting with his friends than giving him loads of catch-up work, which is extremely sensible and definitely the right thing to do. His tutor is catching him up with maths and the rest will come with time. Matt is now watching TV and using the computer whenever he feels like it - gone is the timing of every minute with his eyes on a screen. It is not an issue any more. He can also lie down for short periods of time, something we have just noticed. He also goes to bed later now, which means that the fatigue is gradually lifting. So Matt's progress is steady. Regards, Robyn |
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robyno Member in Phase 3
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Apologies for not posting sooner - Christmas shopping has been eating into the weekends of late and I seem to be constantly running. Matt continues to improve with every antibiotic cycle. He is very busy these days, something he said a while back that he was looking forward to being once again when he was through his illness. So I guess his wish has been granted a bit sooner that he expected. He has a couple of assignments to hand in this week and a whole lot of Christmas bon-bons to make (he has been planning these for some time - he thinks he can do much better than the ones you buy in the shops, so it will be interesting to see how they turn out). He is very disappointed that school is finishing soon, quite a turn-around from the way he used to feel about this time in the school year. Somehow I don't think he will ever complain about having to go to school again.................. School or no school, we are going to have a great summer this year, even if it just means going to the movies or watching a movie at home as a family. It's been quite some time since we have been able to do things like that. And of course we can go to the beach now that Matt has his wet suit and invisible zinc cream. So roll on the holidays! Regards, Robyn |
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BARNEY Moderator
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Robyn...it is so great to hear how good Matt is doing and all he is accomplishing. I bet this is going to be the best Christmas at your house ever. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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robyno Member in Phase 3
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I think you are right, Barney! School has finished for the year and Matt again managed to get all his English assignments handed in and his exam completed. We'll pick up his marks in the morning. He did a few other assignments and tasks for some other subjects and still does his maths with a tutor at home, so he will keep doing that through the long holidays. Hopefully he'll have a few outings with his friends as well. John and I had our lab Christmas party here on the weekend and Matt managed to keep up with everybody and join in the party. He was very tired afterwards (me too!) but didn't miss a beat. He really has come a long way since last Christmas. He is also making Christmas bon-bons for the extended family and they are turning out beautifully. On Saturday he helped John and David decorate our Christmas tree, whereas last year all he could manage was to supervise (though he is very good at that!). He won't be left out of anything this year, that's for sure. Until next time, Robyn |
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robyno Member in Phase 3
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This is just a short post to wish everyone a very merry Christmas. We are just so lucky - Matt went to Mass with us tonight for the first time in three years and it was just wonderful having him with us. We are not looking back now. He is joining in everything and is so excited about Christmas he is ready to burst. So many thanks once again to Trevor, Barb, Meg, Belinda, all the other moderators and all our fellow MPers - we have our boy back and have made lots of friends. Life is good. I know there are a lot of MPers doing it tough this Christmas and we are thinking of you. Life will get better for you, too - just hang in there. Love to all, Robyn, John, David and Matt.  |
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robyno Member in Phase 3
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Happy New Year everyone! We have had a wonderful Christmas. Matt got a new LCD TV with built-in DVD player for his room, which is a step up from the audio books that he used to get because listening to those was about all he could manage to do for so long. He was in the thick of everything and really enjoyed having family visit from Melbourne. On Saturday night the four of us went to the movies together for the first time in over two years. We saw "Happy Feet" and Matt nudged me halfway through and said how glad he was that he didn't eat fish any more (you will have to see the movie to understand that one!). We had a great time and really appreciated being able to do things like that together again. Matt's headache is improving greatly and he can barely feel it anymore when he is going to sleep of a night. That is big progress so we are expecting the headaches to be the next big symptom to disappear..................it will be interesting to see how long that takes from here. Matt's light sensitivity has also improved (eg with his invisible zinc cream on his hands and face, he can manage to go outside for short periods now with his 10% glasses rather than the 2%) and he is staying up for longer at night. That's our news for now. Regards, Robyn |
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robyno Member in Phase 3
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Matt had a real treat last night - after dark (~8.30 pm) he went over to a friend's place for a swim in their backyard pool. He didn't have to worry about glasses so he was able to dive under the water freely. Matt loves swimming and that is the first real swim he has had in over 2 years. Last year he would have been in bed long before dark and he wouldn't have had the energy to stay in the pool for an hour like he did last night. He was all smiles when I picked him up. Matt said that it made a difference being able to lie down now - it wasn't that long ago that he couldn't lay down at all. He seems to be ticking off symptoms at a great rate.....last week he was able to jog just a little without it hurting his head too much. We are off to the Coast for a couple of weeks this Wednesday so I won't be able to post while we are away. Then it will be time to get ready for the start of the school year, so it will be interesting to see what that brings. Until next time, Robyn |
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robyno Member in Phase 3
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We had a great couple of weeks holiday at the Coast. We have managed to convince Matt that the invisible zinc cream won't come off when he swims (he really has to scrub with shower gel to get it off in the shower) so he let David hold his glasses and hat a few times while he dived under the water, eyes shut tight. He had a ball. The only time he had a sleep during the day was after his swim or other outings, and that was only for an hour or so. We had some long walks along the beach as well. He can also run a bit now and only needs his 10% glasses when he is outside in the sun. He just keeps getting better and better. School starts next week so we will see what he can manage this term. We will visit his teacher on Monday and sort out the best way to get him started. Till next week, Robyn |
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robyno Member in Phase 3
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Matt has had a huge week, with school starting back last Tuesday. At the end of last year the most school that Matt had managed was three half days - ie Mon, Wed and Fri at lunch time, in a non-IPR week. Well, he went to school at recess on Tuesday, at lunch time on Wed, at recess on Thurs and at lunch time on Friday!! So it was 4 days in a row and on 2 of those days he was at school mid-morning. Luckily he didn't start his IPR till Friday afternoon so the week was pretty much IPR-free. Not all weeks will be like that and he will have to pace himself, but he is off to a great start. Matt gave us a bit of a fright on his first day back at school. When he got home he passed right out on the family room floor and scared the crap out of his brother (David uses colourful language at times!). It was a hot day and he had been pretty pumped up to be back at school, and he told us later that he had joined in on a basketball game at lunch time, just for a little while (!!). So we managed to convince him to take it easy at lunch time and use a bit more invisible zinc cream so that he doesn't have to wear a long-sleeved T-shirt under his school shirt, and he did much better for the rest of the week. He has been very cheerful all weekend, though he hasn't wanted to go out anywhere. He would prefer to pace himself fo the next week at school. So the school year is off to a great start, and it will only get better from here as Matt keeps improving. He has a long way still to go, but has come a long way already. Regards, Robyn |
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robyno Member in Phase 3
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Matt has had another great week at school. He is keeping up with three subjects out of nine (ie English, Maths and History) and will increase his workload as his fatigue and headache lessen over the coming months. So far he hasn't missed a beat and is loving it. No way will he ever complain about homework and assignments again! One thing that worries us a bit is that he has missed so much school that he doesn't really know where his interests and/or talents lie yet. For example, he hasn't been exposed to much science yet so we hope he can pick that up in the next term or so. At the moment he thinks science is for nerds like his Mum and Dad but I'd hate him to give up on it before he has even begun! I guess it is the same for lots of things and he still has plenty of time to work out what he likes doing. He'll get there in the end. Matt is now down to only one paracetamol tablet per day, from three at the height of his symptoms. His headache is so much better - can't wait for the day when he wakes up and says, "Guess what - it's gone!!" We won't see him for dust then! Till next week, Robyn |
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Dr Trevor Marshall Research Team
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Hi Matt, Good to hear things are going OK Robyn, remember that "any sufficiently advanced science is indistinguishable from magic." You and John are soooo far advanced in your careers that poor Matt must have trouble figuring out beginning, middle and end. He has plenty of time to figure out which way is up, and which is down. Right now I suspect that it takes all his energies just settling back into school, and making new friends |
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robyno Member in Phase 3
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You're right, Trevor - I am just being a "worry-wart"! Thanks to you and the MP Team Matt has a whole life ahead of him to do just what he wants. Thanks, Robyn |
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robyno Member in Phase 3
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Matt has had a good couple of weeks at school. He seems to go to school regardless of his IPR and is taking things in his stride. He joined in a lunch-time cricket game one day this week- he had a few bats and one of his friends ran between the wickets for him and he said it was lots of fun. He has started to run himself a bit now so it won't be too long before he is doing his own running between wickets! His teachers say that he is looking better and better each day. On Friday night we had another family over for dinner and Matt stayed up until well after his normal bedtime. He joined in all the fun and his illness was hardly discussed or noticed. I saw it as a real turning point for Matt and the rest of the family, to be just about normal again (at least when the sun went down!). Regards, Robyn |
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robyno Member in Phase 3
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Highlights over the past couple of weeks have been some great games of cricket at school and having a friend over on the weekend. He kept up with his friend very well, playing table tennis and kicking the footy and watching movies. Just like a normal kid! Another big highlight was that a good friend set up the TV in his room to receive pay TV - boy, was Matt pleased about that! Now when we can't find the remote we know to look in his bed! Matt went up to the next level maths class a couple of weeks ago and is struggling to catch up on all the new work. His tutor is putting in some extra time with him so he'll get there eventually. I am glad he is only doing three subjects as keeping up with all the homework and assignments is tough. When he goes to school he needs to rest when he comes home so it doesn't leave much time for homework except for weekends and the odd day at home. We try to keep him from worrying too much about it and to go easy on himself. Getting better is the number one priority. Until next time, Robyn |
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robyno Member in Phase 3
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Matt's maths problems evaporated somewhat when we realised that he and his tutor were working from the wrong syllabus and he was trying to catch up on maths that his class won't be doing until next semester! He is very relieved, to say the least! Matt seems to be cruising. He commented last week that he doesn't have many dizzy spells any more, but then had a few at school the next day! But he still maintains that he has noticed an improvement in that regard. Yesterday he complained of nausea during his maths tutorial and I realised that that was unusual as well. Matt has battled nausea throughout his illness and I hadn't realised that he had stopped complaining until yesterday. He doesn't have bouts of nausea every day anymore so yesterday was out of the ordinary and noticeable. It didn't last long and he hasn't complained of nausea since. Yesterday was a big day in other respects as well - it was the start of the footy season here. David played his first game for the season and at three quarter time I realised that I didn't have to call Matt at home to give him the score and tell him how his brother was playing. He was right there at the game with us. In fact, he and his mate Johnny were the official score keepers and had the important job of posting the score for all to see. In between quarters the pair of them were out on the ground kicking the footy to each other - gee, last season he hardly went to a game! And then we went out to dinner in the evening and it wasn't a problem. Matt sure is enjoying having his life back! Regards, Robyn |
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robyno Member in Phase 3
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Matt continues to go from strength to strength. He had his first real cold since his illness began - it lasted a week or so but he is over it now. He needs much less rest during the day than he used to and he's not turning in for the night until ~10.30 pm. One night last week he stayed up even later finishing off an English assignment and it wasn't a problem, though he slept late the following day. But it was a good effort. Next week we are off to the Coast for the second week of the school holidays. Driving the ~3 hr to get there is no longer a problem for Matt and he is looking forward to it. We all are. At our Dr's visit this week Matt measured in at 159 cm (he's growing a cm a month at the moment) and 40.6 kg ie he is a skinny kid who can't seem to put on weight. His appetite is good (he's starting to make himself toast about an hour after dinner in the evening) so it will start to happen soon. He says that he's in no hurry to "grow up" as he's not done with being a kid yet. That's understandable. I'll report on our week at the beach when we get back. Take care all, Robyn |
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BARNEY Moderator
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SUCH WONDERFUL NEWS ROBYN/MATT. KEEP UP THE GOOD WORK MATT. HANG IN THERE, WE WILL MAKE IT!!!! BARNEY |
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robyno Member in Phase 3
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We had a great week at the beach, thanks to invisible zinc cream and the MP! Lots of lovely walks along the beach, saw a seal with a fish in its mouth and also a pod of porpoises (think that's what you call them) having a fun time at Tathra Beach - there must have been about 80 of them! School has started back and Matt has not yet increased his work-load, though we'll think of doing that next term I think. Matt is pleased that he can run now without his head hurting so it won't be long before he volunteers to be his footy team's official runner! Yesterday Matt had a huge day. We dropped him off at his school in the morning so that he could watch his team play, but then afterwards he went to the movies with a couple of his mates, Benicar and mobile phone in his pocket, and didn't get home until just before dinner! He was so tired but very cheerful and said that he had had a wonderful day. And yesterday was his worst IPR day of his cycle - we are amazed at what he manages to do now. That's our news for now. Next time I'll be able to report on our time with Meg - we are really looking forward to meeting her. Regards, Robyn |
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robyno Member in Phase 3
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We had a great visit with Meg and her husband and some of the other Canberra MPers and their families. The MP family is certainly a great one to belong to! The kids (Matt and Grace's d1 and d2) were a delight to be around. They look so well now and have a great time and lots of laughs when they get together. David commented afterwards that it was strange in that it was both a happy and sad evening - sad that illness had brought us together but happy that the MP is having such a positive effect on all of us. Many thanks to Meg and T and the other MPers for making it a night to remember. Regards, Robyn |
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robyno Member in Phase 3
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I get the feeling that Matt has made great strides in the last few months. In April, at the end of the first term of school, Matt was in no hurry to increase his work load of subjects. Now, at the end of June, we have been to see his teacher about DOUBLING the number of subjects that he is taking, and he just can't wait until next semester starts so that he can get stuck into them! He has also started guitar lessons of a Friday night, whether or not he has had a day at school before hand. The fatigue seems to be lifting quite markedly and he is not resting in bed during the day at all. Another thing we have noticed is that he only using the 40% NOIR glasses now, no matter how sunny the day is. At lunch yesterday he announced that I could take the black plastic off the windows at the front of the house (these windows get the morning sun only). I didn't need to be told twice and had a lovely time in the afternoon removing all the plastic and dusting all the window sills and light fittings (there is a good side to covering up all the windows..................). Today he has decided that he might have been a bit hasty, but we'll see how it goes. The house is still quite dark, just not pitch black. If it bothers him too much we'll put some back. I'm sure that I had something else to report but I can't remember what it might be - if it comes to me later I'll log back on. Matt's exams start this week so that will keep him busy for a while, then it is school holiday time again. Till next time, Robyn |
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robyno Member in Phase 3
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1 year, 305 days since Benicar We had our three-monthly doctor's appointment last night. Matt has grown 1.5 cm in the last 3 months and is now 160.5 cm. He has put on 1 kg and is now 41.7 kg. The lab forgot to check his 25-D levels (!!) Matt is spending a lot more time outside, albeit smothered in invisible zinc cream) so it is important to keep checking it. We figure that, symptom-wise, Matt is about 80% recovered. He doesn't go to bed during the day at all now and packs a lot in. Even his head-ache is nor bothering him too much now. He can run now and even hopped on the trampoline for a few minutes yesterday (and felt a bit "weird" afterwards), something his poor head has not let him do for almost three years now. Driving doesn't worry him any more. He is about to double his subjects at school and go every day, albeit he won't be there for the first period. But he will be there for most of the day. His light sensitivity is showing great improvement - he can look at the computer screen for a half hour or so without any glasses at all. He never uses his 10% or 2% glasses now, even outside. Really, there's not a lot he can't do now. His biggest problem right now is trying to figure out how he can convert a DVD into MP4 files so he can put his favourite movies on to his new iPod video! We are off to our beach-house today for six days or so - will post in the other thread when we get back. Best wishes to all, Robyn PS Matt sends a |
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BARNEY Moderator
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Robyn/Matt, What wonderful news!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! HANG IN THERE, WE WILL MAKE IT!!!!!!!!!!!!!! GRANDMA BARNEY |
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robyno Member in Phase 3
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My golly, it has been a month since my last post! Sorry to have been so slow but life has picked up a few notches since Matt is about 80% recovered and it's hard to shift him from the computer of a night now that he has a few assignments to get in on time. He doesn't ask for extensions any more.......... Today is Matt's 15th birthday! It is hard to believe that he is now quite a young man. He has a party planned for next weekend with about six of his friends. They will go to a movie then come back home for a BBQ and to generally hang-out. Last year he had a few friends over for an hour, after which time he sent them home so that he could go to bed. Not this year! We have all been very busy for the last month. We had a week at our beach house over the holidays and Matt was able to help in the garden like he used to do before he was sick. We had some lovely long walks along the beach as well. Then a couple of weekends ago we all flew down to Melbourne for the weekend to help my Dad celebrate his 90th birthday. We had a great time - even went to the MCG on the Saturday to see the Blues (Matt's and my team) play the Magpies (John and David's team) and really enjoyed ourselves. Matt screamed and barracked with the rest of the crowd and I had to pinch myself to make sure I wasn't dreaming. The Blues lost, unfortunately, but that didn't dampen our spirits. And Poppy had a lovely birthday. Matt is now heavily into the second semester of school and really enjoying being able to do more subjects. Good to see him start some science at last, as well as multi-media. He goes to school every day, though for not quite a whole day. But mostly. He's almost back to normal. He and his mates play basketball every lunch time and he even runs during the game. It will be footy next, though I would rather he grew a bit more first....... That's our news for now. Take care everyone, Robyn In a nutshell: Matt started the MP when he was 13. Matt was so sick back then - it is hard even now to think about those times. Matt: starting questions. Matt spent an awful lot of time during the day in bed. Listening to audio books was all he could manage. His head hurt constantly, he had this awful neurological tick that happened every few minutes, which also hurt his head, he couldn't bear to look at a screen, couldn't read or write, had periods when he couldn't see properly, and was very tired all the time and very light sensitive. I'm sure there were other symptoms as well, but they were the main ones. He didn't even like to get visits from his friends........... Now, almost two years later, he has his life back. All that's left are a bit of a headache, a bit of fatigue and a bit of light sensitivity. We think he is about 80% better. He is back at school doing 6 out of 9 subjects and is loving every minute of it. He used to say that everything will be 10 times better when he isn't sick any more and that seems to be they way he is approaching life now. He is such a happy kid. And it has been wonderful for us to watch those symptoms slowly but surely disappear over time. |
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P.Bear R.N. Inactive Staff
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Happy birthday Matt! great news! P.B. |
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hrts4me Member in Phase 2/3
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Sounds like besides his first day of birth--this will be one of the best birthdays ever! You go, Matt!!! Congratulations! Hrts |
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BARNEY Moderator
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Matt, Hope you had a wonderful birthday this year!!! I know this year (with the MP) had to be a sweet sweet time. HAPPY BIRTHDAY!!! I am very proud of you for how well you have kept with the MP and have improved. HANG IN HERE, WE WILL MAKE IT!!! GRANDMA BARNEY |
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robyno Member in Phase 3
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2 years, 5 days since Benicar Golly - it's been a month since my last post. I don't know where the time goes. Matt is doing well. The improvements keep on coming. Matt usually goes outside for a half hour after dinner of a night so that he doesn't feel nauseated. He seemed to crave fresh air. Well, he stopped doing that a couple of weeks ago as he doesn't think of it anymore - the nausea appears to have stopped. He also rarely takes a paracetamol these days and doesn't reach for extra Benicar early in his cycle (on day 4 he always took 4 hr Benicar but doesn't seem to want it anymore). That B sure is good stuff! It's wonderful to go into his room first thing in the morning with his Benicar and see him lying down like a normal kid and not propped up on 5 pillows like he used to be. So the only symptoms he has left are a bit of a headache, a bit of tiredness and a bit of light sensitivity. He now takes his glasses off outside for a minute or so if it is cloudy - it gives me the creeps but Matt tells me to stop worrying, that he is fine. But then he puts them back on.......but they are only the 40% glasses, he doesn't wear the darker ones at all anymore. And he rarely wears glasses inside anymore, even at the computer or to watch TV. Matt had a wonderful birthday with his friends. Thanks to everyone for your birthday wishes. It was interesting to compare the photos I took this year with those I took last year, with the same group of friends. Last year Matt was so much shorter, but this year he had caught up quite a bit and didn't look like the odd man out. Matt is coping well with school and keeping up with the work load. Life is so very good! That's our news for now. Best wishes to everyone, Robyn |
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Joyful Board Staff 
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When all the news is good news, then life is good! Thank you for continuing to post updates for the encouragement it gives those of us who are just getting started (like me). Your comment... It was interesting to compare the photos I took this year with those I took last year, with the same group of friends. Last year Matt was so much shorter, but this year he had caught up quite a bit and didn't look like the odd man out. ...really struck me as significant. That not only has the degeneration stopped and the healing occurred, but now growth is normalizing. Wow, the MP really is restoring it all, isn't it? |
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robyno Member in Phase 3
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2 yr 33 days since starting MP. Yes, the MP is restoring it all! We have some big news to report this month - for the last couple of weeks Matt has noticed that his headache disappears completely for short periods during the day. He didn't say anything till last Thursday, when he announced that he went for a whole half hour or so without any noticeable headache. And this morning he woke up without it - and it didn't start for an hour or so after he got up. So at long last, those headaches that he has put up with for more than 3 years now are on their way out!! If they go the same way as his other symptoms then we would expect that, before long, the periods of headache-free time will increase daily until they are a thing of the past. We just can't wait! After that all our other news is pretty insignificant. Matt has been on school holidays and has had a great time at the beach, helping us in the garden and bowling with his friends. He is starting to go for runs after dusk - he doesn't go far but is enjoying being able to run again. He is determined to join in training with his football team next season - that's still some months away so he will probably be up to it by then. The only other thing to report is that we seem to have quite a large goanna living under our shed down at our beach-house - we were all quite excited to discover it and hope that it will still be there next time. We'll keep well out of its way, of course, but it was pretty neat to see it there. I hope they are good at scaring snakes away.......but that would be too much to hope! Regards to everyone, Robyn |
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BARNEY Moderator
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Oh Robyn and Matt, It is so great to see you doing so well Matt....and Robyn, as a mother, I can just feel the joy with you. You have your son back. I, too, Matt am doing well like you and I am sure you are just as thankful for all of TM's fine work to have found a cure for us. HANG IN THERE, WE WILL MAKE IT!!!!!!!!!GRANDMA BARNEY |
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thaiboxer Member in Phase 2/3 
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NICE!!!!!!!!! |
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robyno Member in Phase 3
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Happy New Year to all!! We have had a wonderful Christmas with our families in Melbourne (mine, just before Christmas) and Adelaide (John's, over Christmas). It's the first time in four years that we have been able to make the trip. Matt took it in his stride and had an absolute ball - driving in the car doesn't bother him at all now. We think Matt is about 90% better now. His headache hasn't completely gone yet but on non-IPR days he is without a headache for most of the day. He is itching to go outside without his invisible zinc cream but we have convinced him to wait until the headache is completely gone and then try it for 20 min at a time, so that is the plan. Matt has his life back. He goes out lots with his friends and doesn't miss out on anything much at all. He is planning a full year of school when it startes back in Feb. Matt will be in Year 10 and even has Advanced PE on his list of electives! I don't think there will be any stopping him now! Warm regards to all, Robyn |
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robyno Member in Phase 3
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2 years, 141 days since starting Benicar Palliative meds: can't remember the last time he needed any! Light exposure: still using the invisible zinc cream on exposed skin on the days he goes out, which is most days; using only 40% Noirs out of doors now but if the weather is cloudy he takes them off. Symptoms: Matt woke without a headache yesterday and is still without it, nearly 48 hrs later!! He only has constant headaches on IPR days ie days 3-5 of his cycle. This is the first time he has taken deme and the IPR is very tolerable and doesn't stop him from doing anything or make him reach for the paracetamol. Comments: We had our Dr's appointment last week and Dr T is concerned about Matt's kidneys. His creatinine reading is up at 133 mol / L and his potassium level is 5.5 mmol / L. I have read the information in the FAQ about kidney function and will send the link to Dr T. Dr T has ordered another blood test for a month's time and I hope the reading will be on its way down. Not sure what Dr T will do if it is not. Regards, Robyn PS I forgot to add that Matt has grown 2.5 cm in the last 3 months (164.5 cm) & put on a couple of kilos (46.3 kg) |
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robyno Member in Phase 3
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2 years 237 days since starting Benicar. Palliative meds: rarely needs any (I think he had paracetamol twice in the last couple of months). Light exposure: still MOSTLY using the invisible zinc cream on exposed skin on the days he goes out, which is most days - he is resisting wearing the zinc cream now and often goes out for an hour or so without any; using only 40% Noirs out of doors but we have to nag Matt to wear them at all these days- more often than not he goes out without them. Symptoms: Matt doesn't have a headache at all these days, whether it is a day when he would normally have IPR or not. The only IPR we are now noticing is slight nausea. Comments: The extra sun that Matt is getting these days does not seem to be affecting him adversely. He insists that he doesn't need to worry about the sun any more but we are urging him to be cautious and to go slowly with his sun exposure. I presume that he is starting to regulate his own vit D levels now........we still keep vit D out of his diet (he is so used to that now that he doesn't worry about it and it is not an issue for him). He is on school holidays at the moment and is enjoying himself with his friends. We have talked him out of trying to make the grade with his football team for now. The U16's are rather serious about their footy and I think it would be way too physical for him at this stage. But that's about all he is missing out on! We see our doctor next week and hopefully Matt's creatinine levels we be even lower this time than the last. Matt is eating like a horse so it will be interesting to see how much he has grown. He looks way down on me these days........ Regards, Robyn Last edited on Fri Apr 25th, 2008 10:17 by robyno |
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robyno Member in Phase 3
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2 years, 282 days since Benicar Palliative meds: rarely needs any; trying to remind him to take a probiotic a few times per week, which he mostly remembers. Light exposure: still MOSTLY using the invisible zinc cream on exposed skin on the days he goes out, which is most days - he is resisting wearing the zinc cream now and often goes out for an hour or so without any; not using Noirs at all now. Symptoms: No headaches and nausea has not been an issue. Matt still gets occasional dizziness so he just takes it easy when that happens (which is usually at school when he is playing sport – but it doesn’t always happen with physical activity, just sometimes). On 14 May Matt woke in the middle of the night with a tummy ache (just above the navel), which was so bad that he couldn’t sleep. An extra dose of Benicar seemed to settle him. I kept him home the next day but he seemed to be OK. Got him in to see Dr T the following morning and he concluded that it was not appendicitis (which I was concerned about) and probably IPR (a new one!). Dr T suggested that Matt drink more. I also thought he should take probiotics again (he hates them and I had stopped pushing them on him). No tummy aches since then, fortunately. No other IPR that I can see or that he complains about. Comments: We got the results of his blood tests from 7 April – his creatinine is still falling and was 96 mol / L. Dr T was very pleased. His sodium and potassium are normal, his weight is now 49 kg and his height is 166 cm. His 25D was 28.8 ng / ml, the highest it has been in a long time. He is still avoiding vit D in his diet but is getting more sun. Not sure how much longer I can get him to put on invisible zinc cream for. At least it is winter here now and he still wears it to school. BP was 90/50. Matt considers himself cured and doesn’t give his illness much thought any more. He is busy with school and his friends. He is in the process of picking his subjects for his last two years of high school and thinks he will do double English – all those months spent listening to audio books when he was too sick to do anything else have counted for something! He just loves to read and write. Regards, Robyn |
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Deb Grabetz Member in Phase 3 
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robyno wrote:
Robyn, This must be thrilling to be able to post such an update! Best wishes...and it sounds like Matt's last two years of high school just might be his best! Deb |
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robyno Member in Phase 3
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3 years, 104 days since Benicar Palliative meds: rarely needs any. Light exposure: only using invisible zinc cream when he is going to be outside for any length of time; not using Noirs at all; all the black plastic has been removed from the windows now!! Symptoms: None to speak of, except for occasional dizziness. Comments: Hard to believe it is 6 months since my last post – illness is not high on Matt’s radar these days! Matt has had a couple of doctor’s visits and the accompanying blood tests over the past 6 months. His 25-D results seem to vary with the season rather than his diet (he has always been paranoid about avoiding vit D foods – he bought a couple of hamburgers at school and thought to ask me if mayonnaise was OK, so started scraping it off the hamburgers when I told him that it is made with eggs. Even then he only bought a hamburger on the odd occasion – other than that, his diet hasn’t changed). At the end of June (ie middle of winter) his 25-D was 15.6 ng/ml, and it went up to 23 by the end of Sept (ie well into Spring). That was the last time he has had his bloods tested. His ACE level was still 106 U/L (ie still high) and his creatinine was 96 mol/L (Dr T said that was normal). Matt now towers over me and is putting on weight, though he hasn’t been measured recently. His voice has now broken. He’s never home now that it is holiday time and he did really well at school (four A’s and four B’s – missing a couple of years of school has not held him back appreciably). He is looking forward to his last couple of years of high school. Acne finally caught up with him but it wasn’t too bad and he is using Proactive to clean his skin (and has at least two showers a day, like most teenagers) and it does not seem to be a problem. Plans: The big news is that both Matt and Dr T say it is time to stop taking the MP meds and see if he can fly. He is more than ready (taking the meds is now a real drag for him, whereas earlier in his treatment we never had a complaint) so John and I think that we should see how he goes. We wish everyone a happy and healthy Christmas and New Year. I promise to let you all know how Matt goes without his meds early in the New Year. Regards, Robyn |
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BARNEY Moderator
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Matt and Robyn, That is most fantastic news in the world. Matt, I am so proud of you...you have done so well on MP. And, you, Mama Robyn, have been a great influence on not only Matt but many other MPers. Thank you for all of your posting. Here's wishing you and yours....a very Merry Christmas and a Happy New Year. HANG IN THERE, WE WILL MAKE IT!!!! GRANDMA BARNEY |
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