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positive
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Posted: Fri Oct 24th, 2008 05:26 |
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Hello. I have ordered the 3 pairs of sunglasses, and will spend many more hours reading. I plan to start the Benicar in 4 weeks.
Thank you so much to everyone who shares knowledge in this community! I am amazed to find this cure.
I did not see any posts about the medication Mestinon (pyridostigmine). It's not on the Avoid list. Is there any data regarding usage of it while being on MP? I take this medication 1-4 times a day and one of its main side effects is dilation of pupils. Personally, at the dose I take, the dilation is essentially the only annoying side effect I experience from Mestinon. I take it for muscle weakness, which I believe may be an untreated 'version' of Myasthenia Gravis.
Also, I would like to know if others successfully take ProAmatine (midodrine) while on MP. I imagine that the side effects could build on each other.
Some of the following questions I may be able to answer myself after doing more reading, but there is a lot to absorb...
Six months ago, I began supplementing vitamin D daily, unfortunately. I just stopped it. Anyway, my basic blood test of D2 had come back as 0, and my D3 was 13 at the time (where < 30 means a deficiency, and some health care professionals think that even 40 or 70 is low). I also was diagnosed as having osteopenia and long-standing (since childhood) symptoms of vit D deficiency. Am wondering if that info changes anything about what I should or shouldn't do. Or if it bodes well for treatment or poorly? I will probably test the 25-D and other things in 3 weeks.
I am also experiencing a lot of allergy issues, and was wanting to do something more for them besides the basic pills (Allegra, Claritin, Zyrtec, or Singulair... I mainly take Allegra.) Should I just forget about the food and environmental allergies and begin MP?
Also, I was interested in taking the anti-viral Valcyte to treat Epstein-Barr and HHV-6 and whatever else it might help. I probably have a chronic low-grade EBV infection, and am somewhat likely to have HHV-6, and do not have CMV. I say that based on my blood test results. Should I just do MP and not think about the Valcyte, maybe add the Valcyte later on?
I was also exposed to some excessive (water based) mold recently.
I believe it's possible to plan in advance to take a day or week or month off from MP? Such as if you wanted to be a lot more relaxed for the holiday vacation time. How much would a week off slow down your progress? If that is known.
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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positive
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Posted: Fri Oct 24th, 2008 07:38 |
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Ok from reading, I learned that my low Vitamin D test levels are common for someone with Th1 issues, because my inactive Vit D is being converted to active D, which I probably have too much of. And that low calcium is why I have those rickets type symptoms and osteopenia. So I probably answered that question of mine. The D supplements were helping my mood, but they may have stopped working so well in the last month. Anyway I hope the supplements didn't set me back too much.
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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Julia
Advocate (on leave)
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Posted: Fri Oct 24th, 2008 13:01 |
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Hi Positive,
Thanks for doing so much of your own research!
Please see Should I stop taking any of my medications? which gives the general principles. Beyond that you need to ask your doctor, as we're not medics and can't advise on specific meds that our medical team haven't already commented on.
I'm guessing from your use of ProAmatine that you have low blood pressure, like a lot of Th1 sufferers. As Benicar is generally used (at the dose of 40mg a day) to reduce BP, your doc might need reassurance that the higher dose used in the MP doesn't cause dangerously low BP, and can safely be used with those who already have low BP.
A lot of docs with that concern want their patients to start with a lower dose of Benicar and gradually increase it. This is counterproductive. If your doc has these concerns you might like to print out selected bits from these links:
My blood pressure is already low. Can I take Benicar?
FDA safety insert
Benicar-Basic Information
Benicar Applications Beyond Hypertension
The need for a Benicar blockade
Why shouldn't we ramp up the dose of Benicar?
When you get your D tests done, you can post them in the forum Help with Understanding D-metabolite tests
for expert analysis by our medical team.
Many of us have found our allergies resolving on the MP  It's okay to take antihistamine pills as needed in the meantime.
There is no need to treat viruses, etc, separately from the MP. See Co-infections.
Many of us take a break occasionally from the MP, but it's hard to plan, because you may find your immune system, once activated by Benicar, decides to do its own thing. So stopping meds doesn't always stop herx  See How to take a break from the Marshall Protocol.
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Always consult a physician
Essential Info; FAQ; Julia's story
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positive
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Posted: Sat Oct 25th, 2008 10:14 |
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| From my reading, it seems like I would want Invisible Zinc. But when I was looking at a sales page for it just now, it implies that the formula contains vitamins A, D, and E. That they added in to make it "better" for your skin. So I am wondering if anyone can confirm that Invisible Zinc is really ok/good to use. Last edited on Sat Oct 25th, 2008 10:16 by positive
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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Julia
Advocate (on leave)
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Posted: Sat Oct 25th, 2008 10:31 |
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| Please could you give the link for the page with that information, as the one I'm looking at doesn't say that? They might have changed their formula. See Sunscreen Overview.
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Essential Info; FAQ; Julia's story
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positive
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Posted: Sat Oct 25th, 2008 10:41 |
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I investigated a little, and there are various instances of it on the web. One is http://www.medicalsuppliesexpert.com/inzo-invisible-zinc-oxide-barrier-cream.html
Some of the pages that have that phrasing and mention the A, D, and E don't actually say "Invisible Zinc" but they seem to be the same product with the "Soothe & Cool" names on the little tube? Such as this page: http://www.overstock.com/Bulk-Medical-Supplies/Sooth-Cool-Inzo-Zinc-Oxide-Cream-Case-of-12/1930326/product.html
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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positive
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Posted: Sat Oct 25th, 2008 10:58 |
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Thank you for the info in your previous post, Julia.
I'd still like to know if anyone happened to know anything re: Mestinon (pyridostigmine) which is pretty commonly used for myasthenia gravis. Otherwise, I guess I may be a guinea pig regarding the meds combo. Of course I can try asking docs, but I think most of them would only know to check that list. (Not meant to be a disparaging remark.) And if there are cases with ProAmatine (midodrine).
For a question that's more general and simple, I wonder about the effect of eye dilation... such as if a Phase 1 MP patient went to the eye doc and had drops put in their eyes to dilate the pupils... what would be suggested, that they wear 2% glasses instead of the 10% and try to reduce light exposure to the eyes even more? I figure that's about it, but maybe there are posts about how much more sensitive the dilation would make you. Anyway, if not, I suppose I will find out myself.
I'm kind of worried about eye strain and headaches from the eye discomforts... will have to read up on that.
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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Julia
Advocate (on leave)
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Posted: Sat Oct 25th, 2008 11:00 |
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Thanks for clarifying. Those products are barrier creams, but not suitable as sunscreens. The one mentioned in the link Sunscreen Overview is Megan Gale's Invisible Zinc Sunscreen. There are others mentioned in that link - there is no 'best buy', because different members have reported what suits them, but everyone's skin is different.
Dilation of the pupils for eye exams shouldn't happen often enough to worry about, but wearing your darkest NoIRs is a good idea. Personally I just closed my eyes! Except for getting home - waiting for a bus outside the hospital was not pleasant, and my darkest glasses were very necessary.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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P.Bear R.N.
Research Staff
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Posted: Sun Oct 26th, 2008 22:53 |
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positive, I think that you could continue the Mestinon (pyridostigmine) as needed and think about a possible weaning trial later in the protocol if your physician agrees. It is always hard to know what medications might interfere with progress; but sometimes unknown meds may need to be continued for a while for symptom relief.
We have had some reservations about the midodrine as we are not sure if the Benicar might effect its usefulness as one drug dilated the vessels and the other contracts them. Many have reported problems in TH1 diseases with alpha stimulation. You might be the first to trial both so we would be interested in your response. As you know fainting can be common for many people as a form of immunopathology on the MP, and if this drug were tolerated it might be helpful for a few.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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positive
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Posted: Tue Oct 28th, 2008 03:02 |
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Thanks. I often go 1/2 a day or a day without the Mestinon, but when I don't have it, it's hard to actually do anything that requires movement of my body. And even sitting is worse on me. Don't mind skipping the midodrine really, but I will share results when I try it.
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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positive
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Posted: Sun Nov 9th, 2008 23:19 |
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I have been planning to start the MP, hopefully this doc will let me. I had been on vitamin D for 6 mo and I stopped it cold about 2.5 weeks ago. Approx 3.5 weeks ago I felt sure I had a cold, and after a few days it improved and seemed like it was going away, then a few days later it worsened again, then got better again. Then I developed a cough that got quite bad, and then a lot of other symptoms have started, much worse than before. The doc says it is viral and related to "allergies" not related to my getting a flu shot for the first time in my life. I am hoping someone can advise on whether or not I should take vitamin D supplements right now, given that I feel so horrible. I am guess it might make me feel better, but then it would take longer for me to get rid of this virus? Since I suspect I have some autoimmune type of issues going on. Guess the allergies are going haywire too, antihistamines help only a little. I am thinking I have been having sort of Herx reaction stuff from stopping the D, but I guess then I got a virus recently on top of the other 'cold' stuff.
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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natalie17
Advocate
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Posted: Tue Nov 11th, 2008 00:24 |
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Hi Positive,
The following links may help you and your Doctor,
Should I avoid sun exposure and Vitamin D while I'm waiting to start the MP?
My doctor thinks I have an upper respiratory infection. What should I do?
What can I do for my intolerable cough?
Should I get the flu shot? Vaccines? TB test?
I'd suggest talking to your Doctor about palliative measures you can take for your symptoms. You may also ike to read over and highlight any points in the Benicar-Basic Information Julia posted above to talk to your Doctor about - I know when I started avoiding D (I wasn't taking it deliberately, though) I felt like I had a bad cold and, for me, it was relieved within a couple of weeks on Benicar.
Best of luck and take care,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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positive
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Posted: Mon Nov 24th, 2008 22:43 |
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Are there other places I can post questions and "chat" besides this thread? Since I am not on the MP yet, I think it's just this thread and maybe the D-metabolites section? Are there other active unofficial sites?
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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positive
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Posted: Mon Nov 24th, 2008 23:37 |
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I think I have an okay understanding of the basics, but I'm also fairly confused. In part, because my doctor believes in MP but also believes in getting people's vitamin D levels high, especially if they can't do MP for some reason. I tend to agree that if you are not going to do MP then you should get D levels high so you have more energy and better mood and such, but then it seems like MP says that if you do it, you're allowing the bacteria to multiply faster and suppressing the immune system so you get more infections or something?
Anyway he wants me to take 50,000 IU's a week for 8 weeks to at least see how it does for me, maybe test my levels then and see if I want to continue the high dose D or if I want to do the MP. (I like to think that I can handle how bad the MP will make me feel but maybe I am being too optimistic about it. I mean I am willing to put myself through a lot if it meant I would be healing and eventually cured. He is also concerned that I only have an OK level of support -- not very good support.)
I took 4000 IU's of D3 daily for six months because I had tested my 25-OH, D3 level and it was 13 ng/mL and my 25-OH, D2 was below 4 (and I am thinking they were below 0.5 ng/mL). Also had a 'moderate osteopenia' result and other typical 'symptoms' of D deficiency. At that time my D metabolite levels had not been tested. I stopped the D supplements a month ago because I read a lot about MP and wanted to start it. Then I tested D metabolites about 10 days later. I don't know much about those results except that he kept saying they were like 49 and 43 and he would like to see at least 80. Since then I am sure my levels have dropped since my mood has gotten harder to handle again, and I have an eye infection, worse allergies, "colds", and a different doctor said I had a viral illness. So I was thinking that was Herxing and a good sign that MP would work for me?
So it seems very reasonable to at least give the high dose D a try, but I am hesitating a little right now... wondering if there is something else I should take into consideration before I take a pill of 50,000 IU's (like tomorrow morning)? In a way I am almost scared that I would feel a lot better and then I would no longer want to attempt the MP? I am not just looking for a short term solution though, I want to be actually cured and addressing the real underlying issues because this has gone on way, way too long.
Last edited on Mon Nov 24th, 2008 23:39 by positive
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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Dr Trevor Marshall
Research Team
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Posted: Mon Nov 24th, 2008 23:43 |
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No doctor can "believe in the MP" and also not understand the harm done by Vitamin D to people with Th1 disease.
Your Doc has told you to take that medication, and we are not allowed (by law) to discourage you from doing that. You need to find a new Doctor or find another "Marshall Protocol."
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positive
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Posted: Mon Nov 24th, 2008 23:57 |
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Well... yeah that part is very contrary. He was sort of trying to convince me and explain his reasonings behind the high dose activating the VDR and still being good and not "setting me back" on the MP if I started it later. But I am not really convinced, and want to believe what is here on the site, but it is sort of confusing to me. Most people disbelieve the vit D parts, of course, and I know many reasons why they might, but it leaves me not knowing whether these people simply aren't comprehending all the details/logic or didn't bother to read it or if they have some other real reasons.
Anyway, I got his name from the list sent to me through this forum. And like him very much as a primary Dr. And he said he is willing to put me on MP if that is what I really want. He has a number of patients on it and possibly submits data to the Trials forum (I didn't ask if he does). He wanted me to try this because he was worried I would get super depressed on MP and go through much more bad symptoms than I have been having ever before, and I don't have great support or finances. And because in the six months I was on the D3 supplements I felt an improved mood. Anyway those are his reasons which I don't think are very strong because I feel like I could get through it and I feel like I would have to suffer for like years, but I feel that I could still keep my outlook on life positive considering the situation. I was thinking maybe he isn't sure that I actually have Th1 issues and maybe he is thinking that my case could be more of a "normal" depression/fatigue/achy type of problem? I think there are plenty of signs that I need MP.
I will try to read more that applies to my situation... I guess I really want to feel more solid about whether I should start MP despite friends and this Dr warning me that I would feel so terrible, etc. And even if I understand the reasons why D would be like poison to me... with my current (lack of) knowledge it seems I am having to make some total guesses about whether it applies to me or not? I was thinking that I could at least start it and see how I feel in a month or three.
I am thinking of telling him that I changed my mind and don't want to try the high dose D and want to start MP... but it is a lot to take on, I pretty much am barely "getting by" in life half the time in a bunch of ways. On the other hand, I feel it's the right time in my life to take it on (not to mention that I can get it done sooner and hopefully have a life sooner).
Last edited on Tue Nov 25th, 2008 00:06 by positive
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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Dr Trevor Marshall
Research Team
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Posted: Tue Nov 25th, 2008 00:13 |
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Please send me a Personal Message (left click on my name and select "send a...") with the name of your Physician so we can try to contact him directly.
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positive
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Posted: Wed Nov 26th, 2008 22:54 |
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I am hoping I would be able to tolerate taking some photos with a basic on-camera flash? I know I would have to try it and see, but overall I am guessing the flashes shouldn't be much worse than a minute under flourescent lights, or am I wrong? I could possibly keep the room at only around 45 lux and then the flash is going off a few times a minute, and I only do this for a few minutes a few times a day.
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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positive
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Posted: Fri Nov 28th, 2008 07:44 |
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1. An amber, red, green, or blue tinted bulb that is 25W is not any better or worse than a regular 'soft white' 25W? Is a clear 25W worse? (I am talking about only incandescents.)
2. I'm curious if there is a supposed connection between some of the Vit D avoiding behaviors that some of us have with our illnesses. It seems to me that maybe my body was trying to boost my immune system by lowering my D already. Insomnia causing me to be awake more at night and less in the morning, feeling cold causing me to wear long sleeves and pants more, eye sensitivity causing sunlight and light avoidance somewhat, maybe even avoidance of certain foods, depression and anxiety causing more isolation, etc.
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30/F. Fibro, CFS, autonomic dysfunction (possibly POTS), sleep apnea, osteomalacia, scoliosis, ADD, cognitive issues incl. OCD symptoms, sinusitis, allergies/sensitivities, headaches. Planning to start MP approx Dec 6th.
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markt9452
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Posted: Fri Nov 28th, 2008 20:18 |
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Positive - I read your posts and I think you are a really good candidate for the MP.
nsomnia causing me to be awake more at night and less in the morning, feeling cold causing me to wear long sleeves and pants more, eye sensitivity causing sunlight and light avoidance somewhat, maybe even avoidance of certain foods, depression and anxiety causing more isolation, etc.
I'm pretty familiar with this and I think it's more confirmation of disregulated Vit D metabolism.
mt
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Th1 Lyme vertigo fatigue brain fog skin lesions tinnitis 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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