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Lind
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| Joined: | Sun Sep 21st, 2008 |
| Location: | Virginia USA |
| Posts: | 44 |
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Posted: Sun Sep 21st, 2008 17:06 |
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I have only recenlty found out about the MP and just joined your forum. From what I read and understand, Vit D deficiency is a symptom of Th1 infection, but one of the goals of MP is to get the D level below 20 which is considered deficient by the medical community. Can you explain this for me? Thank you
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 212 |
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Posted: Sun Sep 21st, 2008 17:34 |
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Hi Lind,
The answer to this is not simple, I'm afraid. To really understand what's going on, you need to look at the biochemical situation and the genes which are transcribed by the vitamin D receptor. Most doctors don't have any real understanding of this, including the self-proclaimed "vitamin D experts".
To start with, you need to realise that "vitamin D" is not actually a vitamin. You don't need to eat any. The body produces all it needs internally. (It may need a little help from sunlight, but there is mounting evidence that it does not.) Think about that for a while, and realise that the concept of "vitamin D deficiency" actually makes no sense.
Then you may like to read these for further info:
Vitamin D-Basic Information
Vitamin D Tutorial
If you have further questions, don't hesitate to ask!
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Julia
Advocate (on leave)
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Posted: Sun Sep 21st, 2008 21:41 |
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Hi Lind,
Josh has given you some good links. You might also find these helpful:
"What is the Marshall Protocol?"
Simple Explanations - includes simplified explanations of the vitamin D paradox
D-metabolites tests
Hypervitaminosis-D Symptoms
Success Stories
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
MP Memberships Temporarily Closed.
If you give us some idea of your diagnosis or symptoms, we'll find you some more relevant information.
Please ask any further questions here at your own personal thread.
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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Lind
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| Joined: | Sun Sep 21st, 2008 |
| Location: | Virginia USA |
| Posts: | 44 |
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Posted: Sun Sep 21st, 2008 23:30 |
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The vitamin D turtorial helped explain it better. My illness has been undiagnosed for 25 years! It started with what appeared to be a severe case of Lyme disease (although not tested at the time) treated with doxycycline for 10 days.
Some symptoms cleared, but within months I developed a heart arrythmia, chronic diarrhea and fatigue. The heart arrythmia was cured just a few yrs ago with cardiac abblation. The diarrhea has been relentless to this day. GI docs have diagnosed me with Chron's disease on three separate occasions, but later changed their minds when biopsies were negative.
New symptoms in the last two years have been the most severe: extreme fatigue, joint pain, brain fog, numbness in several areas, blurred vision, persistant rash, elevated liver enzymes, night sweats, headaches. My Rheumatologist tested me for Vit D and said I was very deficient, prescribed 800 u a day which I did for a little over a yr, then she retested and said I was still deficient at 28ng and upped my dose to 2000U a day. I did feel better on the D, but some symptoms are returning and the GI and rash never improve.
I have now stopped the D and am trying to follow MP diet, ordering NoIR glasses and trying to get in to see a doctor who doesn't think I am crazy. Most recently I have been prescribed Cymbalta, which caused sever side affects, Lyrica which I refused to take and told to exercise more. Also was prescribed physical therapy for myodystonia.
This website and the MP are a hopeful light for me as I do believe I have a Th1 infection as my 25D levels are low even on supplements which means to me the bacteria are gobbleing it up to convert to 1,25D.
I have been tested for every disease known to man over the last two years, MRIs, catscans, xrays, utlrasounds, hepatitis, Lymes, Erlichiosis, and many many others. My only blood abnormality is ALT, AST, ALP elevations (most are normal now, but ALP is still slightly high) and low 25D. Sed rate and ANA, RA are all normal, but you wouldn't know it by how I feel. I really appreciate any input. Thanks
[spaces added for readability - mod]
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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Lind
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| Joined: | Sun Sep 21st, 2008 |
| Location: | Virginia USA |
| Posts: | 44 |
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Posted: Tue Sep 23rd, 2008 01:56 |
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I'm happy to say I have an appointment this week with a doctor from your list who is using the MP. Do I need to take the letter "for your doctor" recommended from this website since he is already familiar with the protocol?
Thanks for all your help and support.
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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natalie17
Advocate
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Posted: Tue Sep 23rd, 2008 03:32 |
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Hi Lind,
I don't think you can ever be too prepared when entering a Doctor's office to discuss the Marshall Protocol, so it definitely wouldn't hurt.
Good luck
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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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Knochen
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| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
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Posted: Tue Sep 23rd, 2008 13:11 |
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The most potent weapon you have in your fight against your disease is knowledge. If you go into the doctor knowing the MP inside and out, you will do better than if you depend on the doctor to know about it. It's that simple. So read, read, read.
Assume your doctor is just paying lip service and that you have to know what's going on (sadly, this is sometimes the case!). Your doctor will be more comfortable if he knows you have taken the responsibility to understand the treatment you are asking for. This is true even if the doctor really is conversant with the MP, and even more so if the doctor is less familiar with the protocol.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Lind
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| Joined: | Sun Sep 21st, 2008 |
| Location: | Virginia USA |
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Posted: Wed Sep 24th, 2008 13:40 |
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It took me awhile to read Phase 1 guidelines due to major brain fog...I can see why P2 and P3 aren't available to us!
My symptoms are so systemic and have been on going for many years, including cardiac rhythm problems that I am now concerned about what would happen if a severe event occurred and I ended up in the emergency room.
How would I explain the MP to the ER doctors? Benicar could affect meds they would give me. Or should I only say I am on these meds and not explain it to them?
Even with all the warnings in P1 guidelines I am still willing to try this. The MP is the only thing that has made sense to me during my entire illness.
Also, I am seeing the new doctor tomorrow and am wondering how my recent intake of high doses of Vit D will affect the D metabolite test. I quit taking the D only a 5 days ago and am avoiding it in foods, NoIRs on order.
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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Julia
Advocate (on leave)
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Posted: Wed Sep 24th, 2008 16:47 |
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Lind, please keep all your questions here in your own thread for continuity.
When you have your D test results, post them in the right forum (see How to post your D-metabolites tests results) for expert analysis by our medical moderators. They can take into account what supplements you've been on.
>My symptoms are so systemic and have been on going for many years, including cardiac rhythm problems that I am now concerned about what would happen if a severe event occurred and I ended up in the emergency room.
Bear in mind that the MP has been developed to take into account the possibility that any member may have undiagnosed cardiac involvement. If you carefully follow the recommendations such as How To Manage Immunopathology you should be able to keep immunopathology (IP) tolerable.
Advice on hospitalisation
HEART DISEASE
Essential information - take this a little at a time!
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Lind
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| Joined: | Sun Sep 21st, 2008 |
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Posted: Wed Oct 1st, 2008 00:32 |
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I just want to say that I chose a doctor from the list your site provided and saw him last week. He was the most amazing doctor I have ever met. Even though he only has one other patient on the MP he listened intently to me and spent an hour discussing my illness. He sent me immediately to Quest Labs where they reassured me that my blood sample would be handled per protocol.
It was the best experience I have had with doctors in the last 2 years. I am still waiting for the lab results, but should be in soon. I have been eliminating vit D by diet for about 10 days now and some symptoms are beginning to return with a vengence; IP I guess. That should be proof alone that I have a Th1 infection.
Anyhow, I will post the lab results on the Vit D forum when I get them. Thank you again for your help, and thank you to Dr. Marshall for finally offering hope.
Last edited on Wed Oct 1st, 2008 00:34 by Lind
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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Julia
Advocate (on leave)
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Posted: Wed Oct 1st, 2008 01:01 |
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| That's great news, Lind!
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Always consult a physician
Essential Info; FAQ; Julia's story
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Lind
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Posted: Thu Oct 9th, 2008 02:24 |
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I got my D test results today and was very disappointed to find out Quest did not follow the doctor's lab request sheet. They only reported 25D and D2. That's after I discussed the protocol for freezing the sample and they reassured me all would be well. Now I have to go back and have the blood drawn again and repeat the wait.
The only good I can find in this mishap is possibly my new test results will be more accurate since I have been without D supplements and following the MP diet for three weeks now. With my first test I had only been without supplements for 6 days and my 25D came back as 54ng/ml; obviously overdosing on the supplement for some time.
I am so anxious to start the MP, but my doctor won't procede until I see my cardiologist and a lyme literate doctor. I have been sick for so long that I guess it doesn't really matter, but the wait is difficult because I really believe the MP is the answer. My symptoms are returning tenfold since I am avoiding Vit. D and I can hardly tolerate it. Any suggestions for coping until I can get the Benicar? I am taking tylenol which doesn't do much for the pain, but I understand it's better than an anti- inflammatory.
Thanks
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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natalie17
Advocate
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Posted: Thu Oct 9th, 2008 02:59 |
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Hi Lind,
You might like to see...
Should I avoid sun exposure and Vitamin D while I'm waiting to start the MP?
.. you may have needed to eliminate D more slowly, so going back and trying that might help.
Please call your Doctor ASAP to ask him/her what s/he reccommends you do for your symptoms.
Take care and best of luck,
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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Lind
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Posted: Fri Oct 10th, 2008 01:48 |
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Natalie,
Thank you for your help. The volunteer advocates on this website are fantastic. I really appreciate your quick responses.
I had my second (repeat) labs today and will have to wait two more weeks for results, but I'm hopeful they got it right this time.
I have avoided UV in hopes of not dropping my 25D too rapidly, but based on my flair ups, I would guess it is too much. I'll be more careful until I can start the Benicar.
Thank you again.
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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Jayppers
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Posted: Fri Oct 10th, 2008 14:01 |
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My symptoms are returning tenfold since I am avoiding Vit. D and I can hardly tolerate it.
I know I am not an advocate, but I just wanted to let you know that I am also pre-MP, and also believe I am experiencing what seems to be my immune system trying to kick back in as a result of complete D and substantial sun/bright light avoidance. Although, I'm not certain whether this is the case or not, because they mention that 25OHD above 20 is still immunosuppressive, and I'm still somewhat high at 40 ng/ml. So, I'm not even really sure if this is possible with me still being at this level. All I know is that the malaise is wicked! 
The last time I felt really sick like this was a few years back, which now that I recall, was just prior to me starting my heavy D3 supplementation. It all seems to make sense now. My immune was kicking in back then, and then I unintentionally slammed on its breaks.
I really can understand now why taking exogenous D makes people feel so good.
This is all so fascinating to me, being my own sort of experiment and seeing these things first hand. I hope you find some type of relief soon and that your efforts with your doctor meet with success!
Best wishes to you,
Jason
Last edited on Fri Oct 10th, 2008 14:08 by Jayppers
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Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Lind
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Posted: Sat Oct 11th, 2008 01:16 |
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Thank you for your encouragement Jason. I too was extremely sick two years ago and that is when the doctor started me on D supplements. I gradually got better, but still had symptoms and when they tested my D levels a few months ago, they said I was still deficient even after 800U a day in supplements so they increased my dose to 2000 U a day.
Needless to say I started feeling great. Now that I have learned so much about the steroid "vitamin" D, I understand too. I have noticed that my increased symptoms since avoiding D only last a few days at a time. I am guessing that stored Vit. D is being used by the bacteria to shut down my immune response so I feel better for a few more days, then back to feeling worse. It's like a roller coaster.
I have wondered if IP is possible since my 25D level was 54ng/ml just a few weeks ago, but I think it is possible to have a few days at a time of IP and then return to feeling well. Maybe an advocate could respond to this topic and explain it.
The greatest thing about this website is the support from other people going through the same thing. The doctors were beginning to make me believe it is all in my head and I know it isn't.
Good luck to you too.
Last edited on Sat Oct 11th, 2008 01:21 by Lind
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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Chris
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Posted: Sat Oct 11th, 2008 04:47 |
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While you are avoiding light and D, you can get into some wild hormonal swings as the D levels drop. This can feel like some IP. It's definitely a postive indication that the MP is going to help.
I'm not saying it isn't herx, but the trouble caused by hormonal adjustment do feel a bit like herx.
It's still a mark of progress.
--Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Jayppers
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Posted: Sat Oct 11th, 2008 16:46 |
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Thank-you, Chris. This is good to know. It's easy to only think of it as IP, but you make me aware that you also have to keep in mind the effects of hormonal adjustment as well.
Thanks,
Jason
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Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Lind
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Posted: Sat Oct 11th, 2008 21:37 |
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That's good to know Chris. Something else I have learned from reading on this forum is that much of what I am going through at this time is probably the result of hypervitaminosis D. The list of symptoms that too much D can cause is incredible and I think I have at least 70% of them.
The thought that I could not have lowered my D levels enough to experience true herx is a little frightening. I have only been avoiding Vit D for about three weeks. I read that it takes two months to halve the vit. D in the body and four months to lower it to an acceptable level.
Still waiting for results on D metabolites labs, so I will know for certain very soon. Thanks for the information on the hormone swings.
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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Lind
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Posted: Sun Oct 12th, 2008 02:33 |
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I have been pretty good about my MP diet and think I have eliminated most carbs and vit. D. I am wondering about wine consumption. I do enjoy a glass or two a night but don't know what affect it has on the immune system. I found this information on the web http://www.nutritiondata.com/facts/beverages/3847/2
It seems most of the calories from wine come from alcohol and sugar. Is that a source of energy for the L-form bacteria? Maybe I should eliminate that from my diet as well. Any advice from the advocates?
Thanks, and as always, appreciate your help.
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Pre MP, Crohn's-like GI symptoms, Borreliosis, CFS,Fibromyalgia, MP diet, no UV protection 25D=54ng/ml. 1,25D= 31pg/ml.
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