The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > CFS South Africa progress
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > CFS South Africa progress |
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CFS South Africa Member in Phase 3 
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Hi there I'm happy to say that I started MP on 21 May 2008. I've been off Vitamin D for the past two months and have started feeling about 15% better since avoiding Vitamin D. These are my symphoms I've had consistantly for the last year: I would like to start taking Minocycline in the next few days - 25my - every 48 hours - Do you agree with this? Regards, Ross |
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CFS South Africa Member in Phase 3
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My Symphoms rated 1-10: Insomnia - 6 Flu like symphoms - 5 Fatigue - 5 Post exercise fatigue - 6/7 Post Alcohol fatigue - 9 Swollen/sore glands neck/shoulders - 6 Pain in chest - 5/6 Pain in ears - 5 Sinus congestion - 5 Red/sore eyes - 5 Head aches - 4/5 All these rates increase by about 2 points after exercise and/or alcohol. |
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Foundation Staff . 
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Hi Ross, Welcome to the study cohort. We look forward to following your progress on the MP. Thanks for letting us know you have started taking Benicar. You are responding as expected. Please go over items on this checklist. Be sure to inform study site Staff of all medications and supplements (both Rx and OTC) you are taking. Increasing Benicar in anticipation of sun exposure may help. "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing." ..Trevor.. See What precautions should I take when I must go out? During this initial stage of your MP journey is a good time to review these materials: Phase One Guideline (print it out so you can refer to it often) How does Benicar work? Benicar dosage and schedules I just started Benicar. Why do I feel worse? What should I do? How long should I stay on Benicar? Why don't I feel better? When should I start minocycline? What should I do if I need to take a non-MP antibiotic? What precautions should I take when I must go? It's a good idea to get in the habit of charting your symptoms. You have a lot of hormonal adjusting going on right now as the Benicar blockade dramatically reduces 1,25-D. See Hormonal changes resulting from changes in 1,25D-hydroxyvitamin-D. It's important to avoid natural light exposure and bright light falling on the eyes during this time by eliminating all avoidable daylight outings, wearing NoIRs, lowering artificial home lighting to 30 Lux and covering up well when you do have to go out. See Why does exposure to natural light increase symptoms? The recommended first step should symptoms go past tolerable is to increase Benicar. Based on your report, you could start minocycline soon. Please read What should I know about Minocycline? Let us know how it goes......  |
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CFS South Africa Member in Phase 3
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I've now been on benicar (votum) for 6 days now and I've been feeling really good. I've had about half an hour of sun exposure since my last post. I can feel my symptoms increase after I've been in the sun. I've become a little more light sensitive since starting MP, but nothing serious. I had little increase in symptoms today (small herx I think) as it went away after I took my benicar. I still taking benicar (votum) 40mg - 4 times a day - every 6 hours. I will be starting minocycline tomorrow - 25mg. Do you recommend I take this with my last benicar at 11pm to avoid (sleep through) possible herx? Regards, Ross |
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Foundation Staff .
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Thanks for checking in. Please use our standard reporting format with each weekly report: MP meds: Palliative non-MP meds: Light exposure: Symptoms: Comments: Plan: Questions: -Report Benicar and antibiotics in mg with schedules for each, indicate recent changes -List all your daily non-MP meds in your signature line. -Report the palliative non-MP meds you've taken for the week and the number of times you needed them. -List routine measures to avoid light exposure (NoIRs, low lux home, homebound, limited outings covered up, lite exp. r/t work, etc) in your signature line. -Report the amount of natural light exposure for the week. (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs at a picnic on Friday or housebound all week in low lux home) -Report key symptoms only in a list and rate them on a scale of 1-10 (1 meaning 'barely noticeable' and 10 meaning 'severe'). Indicate which, if any, are intolerable for you. It is not necessary to elaborate. You took the right action by increasing Benicar to reduce symptoms. Benicar palliates symptoms due to light exposure as well as symptoms due to immunopathology. Natural light exposure may have provoked some of the symptoms you reported. It will be important to correlate symptoms with light exposure keeping in mind the reaction is sometimes delayed by several days. See The Effect of Sunlight/daylight and Bright Lights The response to minocycline doesn't always occur immediately. Recommend you take your first dose in the morning so you can assess any immediate response. You should know in a couple days if there is a pattern and if taking it at bedtime will help you avoid some symptoms with sleep. Keep in touch........ |
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CFS South Africa Member in Phase 3
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Hi There I started 25mg minocycline 36 hours ago (7am). My headaches increased quite a bit and my glands seemed a little more sensitive, otherwise not feeling too bad, also a little sore in the ears. Played golf for 5 hours in the sun (for work). I was fully covered up with lonsleeve clothes and cap - no sunglasses, as I'm be reiving them in the next week. Don't think symptoms are from light exposure as they are slightly different then usual. MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Increased to every four hours when I go into the sun to play golf (part of my work) and 12 hours afterwards. mino 25mg Q Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 6 hours since my last post - 5 hours golf - 1 hour in the car driving Symptoms: Insomnia - 6 Flu like symphoms - 5 Fatigue - 6 Post exercise fatigue - 6/7 Post Alcohol fatigue - 9 Swollen/sore glands neck/shoulders - 7 Pain in chest - 6 Pain in ears - 6 Sinus congestion - 5 Red/sore eyes - 5 Head aches - 7 Comments: I'm trying to limit the sun exposure, however because of my job I have to play golf a least once every two weeks for 4/5 hours. I'm trying to limit the sun exposure as much as possible and I cover up almost completely on the golf course. I do feel worse after playing, however in my job its almost unavoidable. Questions: Will this amount of sun exposure every two weeks affect my progress? I do feel worse after I'm in the sun for this amount of time, however I feel I'm getting better and hopefully the MP will still work even if I have the odd small set back from being in the sun. Regards, Ross |
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VEZ R.N. Health Professional
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Thanks for checking in Ross. Your symptoms will continue to increase in severity as you move ahead with the MP if you are not able to control your sun exposure and may even pose a definite risk to your welfare. Please read all of these links for your education and understanding of how you may be affected by sunlight exposure. PROTECTING YOUR EYES Where to purchase NoIR and Bolle 100 sunglasses Natural light; protect skin and eyes.. Artificial light; protect eyes / not skin.. The effect of light on the brain (Amygdala) Dr Marshall wrote: "The short-term consequences of not wearing adequate eye protection will be an increase in neurological symptoms caused by stimulation of the Amygdala in the brain. These neurological symptoms include fatigue, irritability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychosis." Adequate eye protection is particularly important to the process of keeping symptoms manageable and tolerable. If the sunlight exposure isn't excessive enough to maintain a high 1,25-D continuously the bacteria will still be killed and that will be evidenced by immunopathology which you will learn to recognize. If the 'sun flare' symptoms become intolerable (and they probably won't if you are careful), you will need to find creative ways to reduce your sunlight exposure. The VEZ  |
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CFS South Africa Member in Phase 3
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Hi there MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Increased to every four hours when I go into the sun to play golf (part of my work) and 12 hours afterwards. mino 25mg Q Moderator Note: please also post schedule and started date or number of doses at this level. thank you. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 6 hours since my last post - 5 hours golf - 1 hour in the car driving Symptoms: Insomnia - 6 Flu like symphoms - 5 Fatigue - 6 Post exercise fatigue - 6/7 Post Alcohol fatigue - 9 Swollen/sore glands neck/shoulders - 7 Pain in chest - 6 Pain in ears - 6 Sinus congestion - 5 Red/sore eyes - 5 Head aches - 7 Comments: Since my last post I've been feeling pretty good and have been able to go out and socialise more then I would normally do and I feel a little more spontaneous. The only notobale/different symptoms i've had since I started the minocycline are: headaches - 24 hours after taking mino - diarrhoea - slight lightheadedness if i get up form sitting or lying down - A little brain fog. Questions: Are these symptoms part of my herx responsse? I though I'd be feeling alot worse after taking the votum and mino - Do you think the worst is still to come or should I increase mino to 50mg? Regards Ross |
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Foundation Staff .
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Sustained natural light exposure has the potential to elevated 1,25-D and keep it elevated. When 1,25-D is high enough, it is immunosuppressive. With the Benicar blockade in place, the immune system should be killing bacteria even when 1,25-D is high. See Why do I feel better in the summer? And worse in the winter? Your 25-D is also high enough to suppress the immune system and the amount of sun exposure you get will probably increase it somewhat. If symptoms are tolerable, you could increase mino to 50mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the pace of therapy that works for you is part of the experience gained throughout the MP journey. Ramping too quickly is not advised but there is no need to tarry. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds. Let us know how you are doing........ |
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CFS South Africa Member in Phase 3
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It's been four days since my last post. I'm definatley feeling better by an overall amount of about 15% since starting MP. The only real negitive response I've had from the mino since my last post is a slight lack of motivation. I feel a little more tired then usuall, but a good tired and not a tired that feels like I haven't slept in two weeks. The pain in my neck and glands has decreased quite dramatically and people are aleady saying how much better I look, after only two weeks on MP - I can also notice the change. My headaches has pretty much gone away - so I think I'll ramp the mino up to 50mg in the next day. When I stay out of the sun it really makes a difference and I feel pretty good. I'll be trying to avoid the sun like the plague in order to ensure my recovery. MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg - every 48 hours - started 28 May. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 1 hours since my last post - 1 hour in the car driving Symptoms: Insomnia - 6 Flu like symphoms - 4 Fatigue - 6 Post exercise fatigue - 6 Post Alcohol fatigue - 9 Swollen/sore glands neck/shoulders - 5 Pain in chest - 5 Pain in ears - 5 Sinus congestion - 4 Red/sore eyes - 4 Head aches - 4 I'll keep going, I believe I'm on the right track to regaining my health! noted thank you. |
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CFS South Africa Member in Phase 3
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Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June Been feeling alot better since starting MP and after staying off all Vitamin D. I think I'm starting to notice the effects of IP. About 30-40 hours after ramping up to 50mg Mino I started feeling flu like symptoms and soreness in my glands. My eyes were also pretty sore. I noticed that when I took my benicar I started to feel better. The IP (Herx) only lasted for about 8 hours and was tolerable. I've also noticed my sleeping hasn't been that great lately and I think that has to due with my IP. I'm also getting a numbness in my legs and arms quite a bit more then usual. I am able to exercise now (25% of max capacity) and I seem to recover sooner and I'm energised quicker then before MP, which is a huge plus for me. Here are my symptoms at present: Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 1 hours since my last post - 1 hour in the car driving Symptoms: Insomnia - 6 Flu like symphoms - 5 Fatigue - 6 Post exercise fatigue - 5 Post Alcohol fatigue - 9 Swollen/sore glands neck/shoulders - 5 Pain in chest - 5 Pain in ears - 5 Sinus congestion - 4 Red/sore eyes - 6 Head aches - 4 Question: I seem to be progreesing really well on MP and I've been feeling better then I have in the last year. My IP moments don't tend to be bad at all and are very tolerable. Even when I herx it's certainly not as bad as I felt pre-MP. Do you think this has to do with that fact that I've probably only had CFS for about 2 years? Ross there is no way of knowing. thank you |
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Aunt Diana Moderator 
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Hi Ross, I think you may be right....you are so lucky to have discovered the MP so early in your illness. I'm glad it is working out so well for you. |
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CFS South Africa Member in Phase 3
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Hi There Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June I'm progressing vey well on MP. I'm starting to identify IP and I'm finding it tolerable and it last a few hours. I have also had bouts of amazing energy - energy I haven't felt in the last year, so good signs for the future. My light sensitivity has increased and I'm trying to make a concerted effort to stay out the sun. When I play golf for 4 hours in the sun I feel dreadfull afterwards - no golf for me for a while then. My post exercise fatigue is not as bad as before MP. I'm able to train at 25% of full capacity with two days rest inbetween. I'm also finding I'm getting back to my spontaneous old self and I'm socialising a bit more. My positive energy is increasing and I'm really feeling good about life at the moment. Here are my symptoms at present: Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 6 hours sun exposure since last post (5 hours golf - 1 hour driving) Symptoms: Insomnia - 5 flu like symphoms - 5 Fatigue - 5 ost exercise fatigue - 5 Post Alcohol fatigue - 9 Swollen/sore glands neck/shoulders - 4 ain in chest - 4 ain in ears - 4 inus congestion - 4 Red/sore eyes - 6 Head aches - 3 I'll remain on 50mg mino for another week and see how I'm feeling by then before increasing to 75mg. Ross |
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Foundation Staff .
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Ross, you have an illness which is going to require some adjustments if you want the protocol to work. It's good that you will not be playing golf. This is asking for trouble. The reason you are feeling so good is your extremely elevated 25-D is suppressing your immune system and limiting immunopathology (IP). "The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D. You can expect symptoms to increase as this lowers. It's a good idea to check it monthly to be sure it is coming down. Exercise can suppress the immune system also. Please see Are there any guidelines on exercise and rest during the MP? Your goal is to kill bacteria. The evidence of that will be IP which is why we caution folks they will feel worse before they feel better. Please see Simple Explanations. What is your dose and schedule of Benicar? If symptoms approach intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (natural light exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap. The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly. Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster. If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every 3-4 hours will not work. If intolerable symptom/s persist, increase oral 40mg Benicar to every three or fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable. During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation. If increasing Benicar does not reduce intolerable symptoms enough, you may adjust mino. Try only one of these options at a time. Assess effect before trying another option: -reduce the dose first (lowest dose is 25mg) -extend the schedule to every third or fourth day -take an extra dose of 25mg (or 50mg if used to a higher dose) -discontinue until symptoms settle -ramp up by 25mg See When to increase antibiotics -take low dose, high frequency mino (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg) When uncertain what to do when trying to reduce symptoms, it is best to first try reducing the mino dose and/or delaying the next dose before trying an extra dose or frequent mino dosing. Keep up the good work............. |
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CFS South Africa Member in Phase 3
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Hi There Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June This last week has been a bit of a struggle. I've had a increase in all my symptoms. I've been very fatigued and have definately had a lack of motivation to do anything. It's worse in the mornings as I struggle to get going and don't feel to good. At nigt I seem to be a lot better and my brain seems to function a lot better. This must be IP? MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 50mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 1 hours sun exposure since last post (driving) Symptoms: Brain Fog - 6 Insomnia - 6 Flu like symphoms - 6 Fatigue - 7 Post exercise fatigue - 5 Swollen/sore glands neck/shoulders - 4 Pain in chest - 4 Pain in ears - 5 Sinus congestion - 5 Red/sore eyes - 6 Head aches - 5 Question: I've had small bouts of IP before this last week, however this last week seems to have been the worst so far. The IP is tolerable at the moment, should I increase Mino to 75mg? I've been on MP for a month now, why would I only really start to get IP after 3 weeks? Regards, Ross |
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Aunt Diana Moderator
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Hi Ross, I don't know why it took 3 weeks for the IP to kick in....they say to give it 2 weeks....so 3 weeks isn't far off. Everyone seems to respond uniquely to the meds. (oh....I just read Meg's response to you earlier....and she mentions that your Vit D levels are high.....that could explain it. The Vit D is an immunosuppresant ) When your D levels get down below 20 you could start to experience much stronger herxing......definitely when they're down below 12. I would suggest working the Vit D down before ramping....you don't want to get hit with a really strong herx. All this is necessary for us to know how to advise you. Thank you. |
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IngeD Moderator 
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Hi Ross. Thank you for posting. Sounds like the IP has kicked in nicely  and it can take a while before you notice it. Here are some links for you to study re what to do with mino and how to make sure to always keep your symptoms tolerable. Better to go slow than push yourself. It is important that you become independant in medication management and gain experience by adjusting MP meds using your personal tool kit to manage immune system reactions. This skill will carry you smoothly through the protocol. As always, if our information does not provide the answer for you, please ask before you take action. You may need to pick a 'signal symptom' to better assess your response to minocycline adjustments. If that symptom improves with an extra dose of mino, low-dose, high-frequency is likely to help. See How can I tell if the MP is working for me? Kind Regards, IngeD |
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CFS South Africa Member in Phase 3
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Hi There Quick question - I'm looking at ordering my next batch of benicar. I'm looking to get a 6 month script as I live in South Africa and it makes more sense to buy in bulk. Will I be using Benicar thoughout the MP treatment? Just wanted to make sure as I don't want to order such a large quantity if it's not needed. Thanks Ross |
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Aussie Barb Research Team 
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yes you will be.. |
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CFS South Africa Member in Phase 3
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Hi There Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June I've been dilligently avoiding light the past two weeks. I have had quite a big raise in IP - this last week was similar to the week before. I feel extremely fatigued (especially about 30-40 hours after mino) and I also have a lack of motivation and irritability (which is strange for me because I'm a highly motivated aNd driven person). Just coming to terms with IP and keep reminding myself it's only temporary and it's not me but the IP. Also had a bit of a cold the last few days, but seems to be easing off now. MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 50mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 1 hours sun exposure since last post (driving) Symptoms: Brain Fog - 6 Insomnia - 6 Flu like symphoms - 6 Fatigue - 7 Post exercise fatigue - 5 Swollen/sore glands neck/shoulders - 4 Pain in chest - 4 Pain in ears - 5 Sinus congestion - 5 Red/sore eyes - 6 Head aches - 5 Question: In two weeks time I'll be heading overseas for a few weeks for some important business meetings in which I need to bring my A game. At the moment my IP is pretty strong buy tolerable. Do you think it would be a good idea to wean back down to 25mg mino every 48 hours while I'm away to limit IP or will it not make too much of a difference? I don't want to go backwards in my treatment, but I'd like to be feeling pretty good while I'm away - your thoughts would really help. Regards, Ross |
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Foundation Staff .
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Any symptom that correlates with MP therapy may be due to immunopathology. Please see I think I have an upper respiratory infection. What should I do? Whenever the cause of symptoms is in doubt, try an extra Benicar immediately to see if it dampens symptoms. You should also try increasing Benicar to every four hours for 24 hours and assess. Decreasing mino to 25mg is a good strategy to decrease symptoms. Please see See What precautions should I take when I must travel? |
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CFS South Africa Member in Phase 3
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Can someone please answer my previous question? Thanks |
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CFS South Africa Member in Phase 3
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Don't worry just saw the answer - thanks |
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CFS South Africa Member in Phase 3
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Hi there Just a quick question - what is the rule of thumb with alcohol and MP - I know beer has vitamen D in in and should be avoided. Is there any vitamen D in Whiskey? Ross |
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Foundation Staff .
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Please see ALCOHOL on the MP. If you are able, you can find info quickly and help our overburdened small staff of volunteers by independantly trying to locate basic information using the ABC of MP or searching the site or typing key words into the google custom search feature before you ask a question. Thank you. |
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CFS South Africa Member in Phase 3
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Hi There Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June Dropped back to 25mg every 48 hours 3 July I dropped down to 25mg mino every 48 hours a few days ago as I'll be travelling for work and I need to be as sharp as possible. I have found that my IP has decreased as I thought it would - enough to get me functioning with less bad days then on 50mg mino. I'll ramp back up in a few weeks when I'm back from my trip. Otherwise everything seems to be going well and I'm having a few days with awesome energy and a day or two here and there with borderline intolerable IP (when on 50mg mino). Things looking good though and I believe I'm making good progress. My sleeping has really inproved too. Had a couple of drinks over the weekend - I felt better then usuall after drinking that amount as I have been off alcohol for a while now. MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 3 hours sun exposure since last post (driving) Symptoms: Brain Fog - 5 Insomnia - 5 Flu like symphoms - 5 Fatigue - 6 Post exercise fatigue - 5 Swollen/sore glands neck/shoulders - 5 Pain in chest - 4 Pain in ears - 5 Sinus congestion - 5 Red/sore eyes - 6 Head aches - 5 Regards, Ross Noted |
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Foundation Staff .
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Ross, if you're back from your travels, please let us know how you are doing.......... |
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CFS South Africa Member in Phase 3
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Hi there Just got back from 2 and a half weeks travel overseas where I had to be on my A game for work and had a little holiday too. All in all I felt really good after dropped my mino down to 25mg every 48 hours. I had a lot of energy and was able to cope with a very busy schedule with little adverse effects. I would definately not have been able to have done this 6 months ago. People are commenting that I'm looking alot better and overall the trip was a success. I ramped back up to 50mg of mino every 48 hours and I'm sure I'll feel a little worse before I get better. Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June Dropped back to 25mg every 48 hours 3 July Ramped back to 50mg mino every 48 hours 29 July MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 4 hours sun exposure since last post (two and a half weeks) Symptoms: Brain Fog - 4 Insomnia - 4 Flu like symphoms - 4 Fatigue - 5 Post exercise fatigue - 4 Swollen/sore glands neck/shoulders - 4 Pain in chest - 4 Pain in ears - 4 Sinus congestion - 4 Red/sore eyes - 4 Head aches - 4 Question: I have been feeeling really good the past two and a half weeks with very little herx (been in London out the sun which really helps) - it's quite hard to avoid the sun here in SA. Will be moving to London next year which will definately help me - also been wearing sunglasses whenever I'm outside. I'm sure I will get a little worse when ramping up to 50mg, but i feel I'm making really good progress in the two and a half months since starting MP. Do you feel from my posts that my progress is going the right way and that I'm on my way to being healthy again? Regards, Ross |
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Foundation Staff .
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It's nice to see that you have experienced some symptom improvement in phase one....not everyone does. As long as your 25-D is elevated (25D 54.1 ng/mL), your immune system is suppressed. Recommend you retest asap to make sure it is coming down. You can expect symptoms to increase as stores of vitamin D gradually drop. It is important not to stay in phase one too long. Bacteria may exist that are resistant to minocycline and they may repopulate tissues cleared of bacteria. Low-dose combinations of MP antibiotics are far more effective at killing CWD than antibiotic monotherapy. Finding the pace of therapy that works for you is part of the experience gained throughout the MP journey. Ramping too quickly is not advised but there is no need to tarry. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds. Let us know how you are doing........ |
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CFS South Africa Member in Phase 3
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Hi there Ramped back up to 50mg mino at the beginning of last week, and was feeling good until Friday where I seem to have picked up a bit of a sore throat and coug that has been going around. I have had it for two day - nothing hectic just not feeling fantasctic but am able to work. Should I take anything for it or just try let my immune system take care of it? I'm confident my immune system is getting stronger and without taking any other medication I'll be feeling better in the next two days. I'll have my bloods taken next week again and let you know the results and based on those you can let me know the correct action to take going forward. Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June Dropped back to 25mg every 48 hours 3 July Ramped back to 50mg mino every 48 hours 29 July MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 4 hours sun exposure since last post Symptoms: Brain Fog - 4 Insomnia - 4 Flu like symphoms - 5 Fatigue - 5 Post exercise fatigue - 5 Swollen/sore glands neck/shoulders - 5 Pain in chest - 5 Pain in ears - 4 Sinus congestion - 5 Red/sore eyes - 4 Head aches - 4 Regards, Ross |
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CFS South Africa Member in Phase 3
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Quick question: You say it's not advisable to stay in phase one for to long - what is considered a too long? How do you know when it's a good time to progress to phase two? |
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Foundation Staff .
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Three months is a general guideline. Folks who are complant with avoiding light are usually able to progress to phase 2 by that time. |
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CFS South Africa Member in Phase 3
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I'll get my blood tests done asap and then we can assess whether I should progress to phase 2. |
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CFS South Africa Member in Phase 3
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Hi there Ramped up to 75mg of mino every 48 hours today. I was feeling really good on 50mg and was having little herx and thus I've now ramped up. I'll be getting my blood tests done to tomorrow and as soon as I have the results I'll let you know. From there you'll be able to tell me if I should start Phase 2 of MP. I have been very good at avaoiding the sun of late which has really helped me feel alot better - no more 4 hours on the golf course! Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June Dropped back to 25mg every 48 hours 3 July Ramped back to 50mg mino every 48 hours 29 July Started Mino 75mg every 48 hours 13 August MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 25mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 1 hours sun exposure since last post Symptoms: Brain Fog - 4 Insomnia - 4 Flu like symphoms - 4 Fatigue - 4 Post exercise fatigue - 4 Swollen/sore glands neck/shoulders - 4 Pain in chest - 4 Pain in ears - 3 Sinus congestion - 4 Red/sore eyes - 3 Head aches - 3 I keep you posted as to my progress after ramping up to 75mg of mino. Regards, Ross |
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VEZ R.N. Health Professional
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Thanks for checking in C. Based upon your symptoms you seem to be handling 75mgs of Mino ok. Please try to control other aspects of your environment, ie. sun, diet, rest etc. to help you keep your symptoms tolerable. In phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg) to see if this dosing has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit. You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs. You are responding as expected and doing a nice job. Keep up the good work. You will be moving on before you know it.  Best Regards, VEZ |
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CFS South Africa Member in Phase 3
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Hi there Since ramping up to 75mg of mino last week I've had a bit more IP (herx) then I had on 50mg (toward the end of my 50mg dose). However I've also had a lot of energy too, in the period when I'm not herxing. I had my blood test done last week and I await the results. Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June Dropped back to 25mg every 48 hours 3 July Ramped back to 50mg mino every 48 hours 29 July Started Mino 75mg every 48 hours 13 August MP meds: Benicar(votum 40mg) - every 1 hours, four times a day. Mino 75mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 1 hours sun exposure since last post Symptoms: Brain Fog - 4 Insomnia - 4 Flu like symphoms - 4 Fatigue - 4 Post exercise fatigue - 4 Swollen/sore glands neck/shoulders - 4 Pain in chest - 4 Pain in ears - 3 Sinus congestion - 4 Red/sore eyes - 3 Head aches - 3 I feel like I'm progressing extremely well and I know I'm feeling and looking better. From my progress reports and taking into consideration my blood results, symptoms and length I've had CFS, do you think I'm making good progess??? Regards, Ross |
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P.Bear R.N. Inactive Staff
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Ross, Since your are having Immunopathology (IP) you are making good progress by killing bugs. As your 25-D level slowly drops you can expect greater bug killing and perhaps more intense IP responses. Keep up the good work. best, P.B. |
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CFS South Africa Member in Phase 3
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Hi There I have just received my 25D results (taken on 14 August - three months after initial tests). My D3 ia now 21.7 ng /ml, quite a bit drop from 54.1 three months ago. Does this mean that I'm making good progress, or will you only be able to tell when my 1.25 results come back? Regards, Ross |
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CFS South Africa Member in Phase 3
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Do you think I'm ready for phase 2? If so how do I go about it? |
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CFS South Africa Member in Phase 3
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Can someone answer my previous questions? |
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P.Bear R.N. Inactive Staff
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Ross, Great news about your 25-D coming down! After you are on 100mg of Mino for a few weeks you may be ready for phase 2 if your reactions are not intolerable. suggest to send for the questionnaire for phase 2 Q asap so you will be able to discuss the next antibiotic with your doctor.Send an email to marshallprotocol2@yahoo.com with 'request Phase 2 Q' in the subject line. Before you commence the next phase, please post in the Phases Two and Three forum so we can discuss the details of your next antibiotic. We look forward to welcoming you there when you have received a response to your completed questionnaire. Where is the Phase 2/3 forum? This link at the top Left of each page The Marshall Protocol Study Site - will take you to the main page. Scroll down that page till you find the Phases Two and Three Forum - click to to get the page where you can post a new topic. We look forward to welcoming you there when you have received a response to your completed questionnaire. best, P.B. |
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natalie17 Moderator 
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Ross - 1,25-D fluctuates on the MP and doesn't need to be tested |
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CFS South Africa Member in Phase 3
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Hi there I'd like to post a new topic on the phase 2 and 3 forum, however I can't seem to find the right page - please advise as to where I can find it. Regards, Ross |
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Aussie Barb Research Team
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Have you, as PB suggested, "send for the questionnaire for phase 2 Q asap so you will be able to discuss the next antibiotic with your doctor. Send an email to marshallprotocol2@yahoo.com with ' Your ID username, request Phase 2 Q' in the subject line."? thanks, Barb ... |
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CFS South Africa Member in Phase 3
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Hi there I have had minimal IP in the last week on 75mg mino. Next week I'll be starting 100mg mino and when my IP is tolerable I will move onto phase 2, which should be in the next few weeks. Feeling pretty good and excited to start phase 2 soon. Got a cold/flu 3 weeks ago - it was the first time I had to take a few days off work in over a year. Put it down to the changing of seasons and the temperature change. Otherwise my immune system seems to be getting stronger and more resiliant to colds and flu. Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June Dropped back to 25mg every 48 hours 3 July Ramped back to 50mg mino every 48 hours 29 July Started Mino 75mg every 48 hours 13 August MP meds: Benicar(votum 40mg) - every 1 hours, four times a day. Mino 75mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 1 hours sun exposure since last post Symptoms: Brain Fog - 4 Insomnia - 4 Flu like symphoms - 4 Fatigue - 4 Post exercise fatigue - 4 Swollen/sore glands neck/shoulders - 4 Pain in chest - 4 Pain in ears - 3 Sinus congestion - 4 Red/sore eyes - 3 Head aches - 3 Regards, Ross |
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CFS South Africa Member in Phase 3
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Hi there I started 100mg mino two days ago with little herx so far. However alot more fatigued. I'd like to stay on 100mg mino until the end of next week and then progress to phase 2. Started MP 21 May Started Mino 25mg every 48 hours 28 May Started Mino 50mg every 48 hours 6 June Dropped back to 25mg every 48 hours 3 July Ramped back to 50mg mino every 48 hours 29 July Started Mino 75mg every 48 hours 13 August Started Mino 100mg every 48 hours 9 Sep MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 100mg every 48 hours. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 3 hours sun exposure since last post Symptoms: Brain Fog - 4 Insomnia - 4 Flu like symphoms - 4 Fatigue - 6 Post exercise fatigue - 4 Swollen/sore glands neck/shoulders - 4 Pain in chest - 4 Pain in ears - 3 Sinus congestion - 4 Red/sore eyes - 3 Head aches - 3 Question - I'd like to progress to phase 2 in the next 10 days - I have been given approval to start the next stage. Is there anything I need to be aware of before I start the next stage - and should I post a new topic in stage 2 and 3 before I start? Regards, Ross |
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VEZ R.N. Health Professional
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Thanks for the update C. Plan looks good, you will be posting in the Phase II section. Please read over the phase II guidelines to prepare. Keep up the nice work. Best, VEZ |
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CFS South Africa Member in Phase 3
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Hi There I'm about to start Phase 2 on MP and I'd like to give a recap on the past few months on MP. I started staying off all foods with Vitamin D in March 2008 which really helped me feel better before I started MP in May 2008. As a whole I have definately felt better then pre MP. I couldn't go out and socialise pre MP as I would get tired and moody with every move I made - not great as I used to be extremely social and excerise frequently. I would feel fatigued all the time and couldn't sleep without waking up about 20-30 time a night - no jokes. However since starting MP I have been sleeping great albeit with 1mg dormanoct a night which I'll slowly wean myself off. The pain I used to feel in my neck has pretty much gone which is such I relief and only flares up if I exert myself to much and stay in the sun for quite a while. I'm able to do a 30 mins of exercise twice a week with no adverse or after effects of feeling fatigued and having swollen glands. I am however taking it very easy and my progress is slow and ready and I'll keep it that way. I really have found that there are moments where I have had more energy then I have had in years which is awesome - however I have to use it constructively and make sure I don't overdo things. I have had quite a bit of herx in the four months on MP - it usually comes when I increase the mino - then after a week or two on that specific dose it goes away and I increase the dosage. I must however say that the herx I have had has never been as severe as the symptoms I felt before MP - maybe my mind reminds me that it's only temporary and that it won't last for long which really helps. My whole mindset has been great through MP - I have always believed in the literature and that it would make me better and that's exactly what is happening. The mind is extremely powerful and I believe that and MP have helped to make me feel better quicker. My D25 was 54.1 when I had it tested pre MP and after 3 and a half months it's gone down to 21,7. I aim to decrease that further and know I can do it by being extremely disciplined. As I sit here today I feel great - sure I have my tough days but they are getting fewer and fewer and there is a much bigger picture in site and that's altimate health. I believe I'll get there and I'm not in a huge rush. I'm looking forward to Phase 2 and believe I can handle anything it throws at me. Regards, Ross |
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CFS South Africa Member in Phase 3
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Phase 2 - almost 80 days MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Phase 2 meds. Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 1 an hour sun exposure in the in the last week I had a good week this week. I really healed very quicky after having 4 wisdom teeth out. I was a bit nervous having them out and the time it may take to heal, but when I went to the doc for a checkup a week after the OP - he said it's one of the fastest he's seen anyone heal. I took great confidence out of this and believe it is because I'm getting better. Yesterday I had more energy then I've had in a long time - I really got a lot done and was bubbling with energy - was great. herx is tolerable. I had my 1.25D blood test taken on 24 Nov - I await those results. Symptoms: Brain Fog - 4 Insomnia - 4 Flu like symphoms - 5 Fatigue - 5 Post exercise fatigue - 5 Swollen/sore glands neck/shoulders - 5 Pain in chest - 5 Pain in ears - 4 Sinus congestion - 4 Red/sore eyes - 4 Head aches - 4 Regards, Ross December 21st: Light exposure: 8 hours sun exposure in the in the last week I have had a lot of sun this week for my job, however I have been able to handle better than expected. I have felt very fatigued when getting too much sun, however I have rested well and my energy has come back nicely. I have had to do a lot of entertaining for my job this week and I've done it really well with a lot of energy - something I couldn't have done 6-8 months ago. I go on holiday in a few days and look forward to some well deserved rest after a busy but very good year! |
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CFS South Africa Member in Phase 3
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Phase 2 MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Phase 2 meds Palliative non-MP meds: 1mg dormanoct before a go to sleep Light exposure: 10 hours sun exposure in the in the two weeks I have been on holiday for the last two weeks with quite a lot of sun exposure which was unavoidable as I was travelling around the country. I also did quite a bit of exercise and socializing. I had bouts of great energy, better then anything in the last year, then also some times of fatigue due to the amoungt of sun, lack of sleep etc. I was very happy with how my body coped as this is almost my last bit of time in the sun as I'm moving the UK in Feb. I have been pretty tired for the last few days as I'm back at work. But I'm feeling good and feel like I'm making good progress and I'll heal even quicker when I'm in the UK and out of the sun. Things are really looking up and I'm looking forward to a great 2009. Symptoms: Brain Fog - 4 Insomnia - 4 Flu like symphoms - 4 Fatigue - 5 Post exercise fatigue - 4 Swollen/sore glands neck/shoulders - 4 Pain in chest - 4 Pain in ears - 4 Sinus congestion - 4 Red/sore eyes - 4 Head aches - 4 Regards, Ross |
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CFS South Africa Member in Phase 3
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Alumni Update Phase 2 MP Meds - 40mg benicar every 6 hours Palliative no MP-meds - 1mg dormanoct every night before I sleep Light Exposure - 1/2 hours in the last week I have been feeling pretty good of late - very positive and feeling really happy. The limited sun has really helped change my mood into a more stable and positive mood with less mood swings. I am less stressed as I have moved to London which I'm really happy about. One really good thing that has come out of me getting sick and finding a solultion to my illness, is my mind. Over the last two years my mind has really got so strong and because of this I feel I can do anything. I keep on getting people coming up to me commenting on how positive I am and how I'm really and inspiration to them. I'm glad to have the ability for people to now look at me and see what I've achieved since getting sick. I now don't take my health for granted and live life to the full. MP has really helped me achieve this mindset and I believe it will only get stronger as I get better. I am progessing nicely on my treatment and I'm still feeling a little herx at the moment, but the good days are becoming more and the bad days less. Symptoms: Fatigue - 4 Brain Fog - 3 Head Aches - 4 Flu like symptoms - 4 Insomnia - 4 Swollen glands in neck/shoulers - 4 Pain in chest - 4 Pain in ears - 4 Sinus congestion - 3 Sore eyes - 3 Post exercise fatigue - 5 Regards, Ross |
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