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robyno
Member in Phase 3
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Posted: Sun Jun 26th, 2005 07:44 |
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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
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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
____________________
Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Aussie Barb
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Posted: Sun Jun 26th, 2005 08:12 |
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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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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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hrts4me
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Posted: Sun Jun 26th, 2005 21:04 |
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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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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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robyno
Member in Phase 3
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Posted: Mon Jun 27th, 2005 00:32 |
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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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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Mon Jul 11th, 2005 00:52 |
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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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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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hrts4me
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Posted: Thu Jul 14th, 2005 05:52 |
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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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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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robyno
Member in Phase 3
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Posted: Fri Jul 15th, 2005 02:11 |
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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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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Tobi
Member
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Posted: Fri Jul 15th, 2005 05:57 |
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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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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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GeorgeinRollaMO
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Posted: Sat Jul 16th, 2005 10:47 |
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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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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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robyno
Member in Phase 3
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Posted: Fri Jul 22nd, 2005 07:32 |
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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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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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OzJen
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Posted: Fri Jul 22nd, 2005 09:32 |
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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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CFS 24+yrs;
R.conori, Q fever antibodies
1,25D 8/10 64.6
25D 4/3 19.6
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robyno
Member in Phase 3
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Posted: Sun Jul 24th, 2005 09:46 |
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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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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Sun Jul 31st, 2005 11:03 |
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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
____________________
Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Tue Aug 23rd, 2005 00:39 |
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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
____________________
Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Thu Sep 1st, 2005 12:40 |
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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
____________________
Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Sep 1st, 2005 14:20 |
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That is great news, Robyn
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Tobi
Member
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Posted: Fri Sep 2nd, 2005 01:20 |
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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
____________________
CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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BARNEY
Moderator
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Posted: Fri Sep 2nd, 2005 02:20 |
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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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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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robyno
Member in Phase 3
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Posted: Sun Sep 4th, 2005 09:48 |
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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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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Sep 4th, 2005 15:05 |
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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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