I just got an eye full about the Marshall Protocol while googling vitamin D and Lyme.
But what I saw has me totally confused. This protocol calls for lowering your D levels. The explanation makes sense.
Has/does anyone use this protocol? Does your LLMD?
Here I am supplementing D and feeling good and this theory/method says I may feel better but I am helping the bacteria! Yikes.
I haven't even seem my LLMD yet and I am already frustrated! What is the right treatment?!
Posted by dguy (Member # 8979) on :
vitamin D is a type of steroid, and steroids are bad news when you have an infection because they supress your immune system
the immune supression makes you feel better because it cuts the inflammation responsible for your symptoms, but that lets the infection grow worse
the MP seems to work best for those who have low vitamin 25D while also having 1,25D
in my experience, the MP works, but it's a long process (multi-year)
Posted by CheriAnn (Member # 19673) on :
So does vitamin D help to heal Lyme or make it worse?!
Posted by dguy (Member # 8979) on :
anything that inhibits your immune system from fighting lyme is going to at minimum delay recovery, and at worst allow the infection to spread/multiply
AFAIK, no one here who had been infected for a long time has reported finding any treatment that has cured them in fewer than many months if not years
on that basis, any supplement or med that yields a quick reduction in a symptom, say in less than a month, is very likely merely treating the symptom
IMO the only time to consider turning down your immune response with vitamin D or more powerful steroids is if that immune response is so excessive as to be causing permanent damage to your body
Posted by Lonestartick (Member # 2151) on :
Part of Marshall's hypothesis is that patients infected with intraphagocytic, L-form bacteria have a Th1 disease involving dysregulated D metabolism, which can cause runaway inflammation and paralyze the patient's innate immune response. He believes high 25-D may inactivate the VDR, but reducing D levels and using Benicar may reboot the immune response so these pathogens are recognized.
This certainly seems true for a group of Sarc patients I know with the disease who have used the MP to obtain remission. It may also be true for some Lyme patients, like me. I did the MP for several years after being considered a treatment failure and relapsing immediately upon stopping antibiotics in the past. My lab confirmed diagnoses included Lyme disease, Bartonella, Babesia, Mycoplasma, HHV-6 among others. In my case, the protocol left me feeling much worse initially, but my progress eventually went on to evolve very much as predicted by the Sarc patients who had improved before me.
Upon testing prior to starting the protocol, I did have the dysregulated D levels that Marshall reports among the Sarc patients who most benefit from the MP. I also had higher than normal ACE levels. At this juncture, I am off all ABX and my D- metabolism has normalized. I can now eat natural D foods and react to the sun normally, which is nice as live in the sunny South. However, I still do not tolerate synthetic forms of vitamin D and so I continue to avoid those. These days I am enjoying a remission I never dreamt possible. However, my experience seems to be fairly unique among the majority of Lyme patients I know of personally who have tried it.
I know of other Lyme patients who improved on the MP, even a few who completed the protocol and have gone onto enjoy better health the way I have. Likewise, I know of many others who lost what little quality of life they had and who suffered considerably on the protocol, some becoming much worse. Many of these patients followed the MP to the letter, but were labeled as non-compliant and banned from the website. I'm not sure whether or not their poor responses were included in data published by the study site.
It is a very extreme protocol and I don't believe it is a universal answer for our patient group. I know of numerous other successful Lyme patients who have gone on to enjoy health and healing after doing more traditional ILADS based treatments, especially now that ILADS doctors are recognizing and treating co-infections.
It is a long protocol as some of its critics have pointed out. That didn't bother me when I embarked on it, largely because Lida Mattman was at the first, Chicago MP Conference where she told my mother that she expected it to take about 5 years based upon her own understanding of treating chronic Lyme disease. That time frame seems to be in line with the Roadback protocol, which also utilizes a pulsed antibiotic regimen in lower doses than commonly used by most LLMDs. It also seems to fit the treatment time-line of many of the other chronic Lyme disease patients using other antibiotic regimens who post here in this discussion forum.
You might search Lymenet for past discussions. There are also numerous websites about the pros and cons of the MP. Most that are related to the official MP websites do not seem to include reports that are less than stellar. You might try to locate improved patients and ask them about their experience. Likewise, you should consider discussing the cons with those who were not helped by it. You should also discuss anything you are thinking of doing with your LLMD.
It may be worthy to note that the doctor at the above website seems to believe that the body can heal naturally from most diseases without antibiotics and does not seem to be very familiar with Lyme disease, especially the chronic, late-stage Lyme patients who frequent this forum.
Posted by Myco (Member # 9536) on :
Might as well just do pulsed Minocin, Zith and maybe Flagyl later. Low doses and multi year therapy seems to produce the same results as Roadback Protocol. Meaning both groups of patients eventually go into remission but need to stay on low dose abx from time to time.
Why bother with the benicar or D avoidance? We just don't know what the long term effects are. No one does.
Seems to me Roadback is proven to work and does work. Has a history 20 yrs and going.
My honest opinion.
Posted by CheriAnn (Member # 19673) on :
Thank you. This helps. Still confusing but I am not in a frantic confused mode. Posted by Ocean (Member # 3496) on :
H CheriAnn,
I have never tried the MP, but a woman on this board (name is Unexpectedills) did for 6 months and got much much worse. She is still recovering from it.
I have heard more bad stories than good, but you hear some of each with every treatment I'm sure!
Take care, Ocean
Posted by heiwalove (Member # 6467) on :
i have also heard many more bad stories than good. i would be very very careful with this protocol. just my honest opinion.
Posted by heiwalove (Member # 6467) on :
ps. IMO and the opinion of MOST LLMD's, vitamin D is necessary for our healing. the marshall protocol consists of a small subset of patients and one researcher (who is not a doctor, incidentally) who believe otherwise.
Posted by CelticLadee (Member # 19972) on :
Hello Cheri Ann.
May I speak from my heart to you? I did do the MP for 3 1/2 years for my "fibromyalgia". The bottom line is, although I followed the protocol to the letter, it did not make me well. I had to quit as I was getting sicker and less tolerant of Minocycline.
It is my personal opinion that because the MP forbids most supplements your body is robbed of needed nutrients which aid your wellness. I did OK for a couple years before I started downhill. It is likely because the previous years to that I was on a health diet with organic foods and high quality supplements. Also it is my opinion without aids to detox my body I found it impossible for me to handle the toxins generated by my bodily systems disease processes.
It seems to me now that with all the valid research coming out about vit D being supportive for your immune system it is just so wrong to rob your body from it. Personally I find I am much better off now using vit D supplement and sun exposure to keep my D25 in the normal range. Which by the way I believe has made my immune system work better rather than suppress it.
Please study the benefits of vit D before you make your choice. It is becoming quite apparent the body needs vit D to fight many ailments such as persistent bacteria, tick diseases, heart disease, cancer, etc. In fact, I heard shared by a very good MD researcher knowledgeable about persistent C.pneumoniae bacteria research; that the MP sets up perfect conditions for a human factory to aid C.pnuemoniae reproduction. It has the 3 life stages and many similarities to spirocyte life cycles it seems to me. I certainly do think C.pneumoniae is a problem for me now at any rate.
That is my experience and opinion. I am not a medical person or scientist, but I no longer believe the MP is safe for everybody. Some of my comrades are still trying to recover as I am. We are the lucky ones. It is horrible to know a few sadly died. What really is more than outrageous is the ones that question the MP or don't do well are shunned, banned or ignored. What kind of a clinical study is that I ask you? Not very honest is it? That really disturbs me!
If you want to read more about my MP experience please read my only post here so far. I am looking for answers for myself and my husband who had a rash that looked like Lyme EM rash to me. I make references to my experience there if you are interested to hear some more about it.
Posted by Keebler (Member # 12673) on :
From: NUTRITIONAL SUPPLEMENTS IN DISSEMINATED LYME DISEASE
J.J. Burranscano, Jr., M.D. July 2008
Excerpt from page 4:
VITAMIN D
Surprisingly, most people in America are vitamin D deficient. In the lyme patient, low vitamin D levels can cause diffuse body aches and cramps that are not responsive to magnesium or calcium supplements.
Some also believe that vitamin D is essential for normal immune and hormone function. I strongly urge you to have a fasting blood level drawn. It is recommended that blood levels be in the upper half or the normal range.
If it is not, then 2000 to 4000 units daily are needed for several weeks to make up for the deficit, and then a lower maintenance dose may be necessary, based on results from repeated blood level monitoring. If vitamin D is needed, improvements take 2 to 3 weeks to note, but are well worth the wait.
(Quest) Lab Acknowledges Problem With Vitamin D Test
By ANDREW POLLACK
Published: January 7, 2009
LOS ANGELES -- The nation's largest medical laboratory company provided possibly erroneous results to thousands of people who had their vitamin D levels tested in the last two years, the company has acknowledged.
The company, Quest Diagnostics, has already sent letters to thousands of doctors listing the patients who might have received ``questionable'' test results and offering free re-tests.
Typically the test costs $100 to $200 or more.
- Full article at link above.
-
Posted by Buster (Member # 19472) on :
The LLMD's I have been to or heard of do not recommend reducing Vitamin D
Posted by lpkayak (Member # 5230) on :
i was recently told that someone (not on this board) had tendon damage from levaquin and 2000-4000 D a day improved it a lot
are you reading dr cattals writings? he says it helps a lot more than lyme
Posted by Cold Feet (Member # 9882) on :
lpkayak,
Maybe the levaquin was effective in addressing the bacterial infection(s) in the tendon, and the D quenched the inflammatory process?
Many mycobacteria LOVE to invade the tendons...
Posted by lymeHerx001 (Member # 6215) on :
what about that levequin, can I play piano anymore or type or use a mouse?
We need our tendons, is this issue overblown?
Posted by lpkayak (Member # 5230) on :
cold feet-i don't know. so many variables we deal with. i took ciproand two months later my achilles started acting up-and i only took it 10 days. i am babying the achilles and really mad cuz now that the snow is gone i really wanted to exercise and walking is just about the only thing i can do..now that is really limited
the tendon is getting better...but i really have to not over do or it goes right back
Posted by lymeHerx001 (Member # 6215) on :
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