This took me a long time to figure out. It is an interesting story. Maybe only if you are a Lyme nerd like me. Patients with Lyme disease have weird vitamin D levels. Most are diagnosed with vitamin D deficiency. In fact patient have come to me saying they have a severe vitamin D deficiency which never corrects no matter how much vitamin D their doctors give them. Strange, isn't it? Everyone knows that vitamin D is a nutrient that is essential for bone health, your body needs it adsorb calcium and build strong bones. Wait a minute. Its not a vitamin at all. Its a hormone. Vitamins are co factors needed in trace amount to facilitate the actions of enzymes in the body. Hormones are messenger molecules. Vitamin D is stored like a fat soluble vitamin, but it doesn't act like one. Other vitamins are taken in via the diet. Vitamin D is mostly manufactured in the skin due to the action of the sun. It turns out that vitamin D is a busier hormone than we thought. It also has important regulatory effects on the immune system.
And do these Lyme patients really have a vitamin D deficiency? NO. Some are vitamin D toxic! Doctors are looking at the wrong thing. Vitamin D exists in several chemical forms. The major circulating form is the OH,25 form. This is the form that doctors generally measure. It should exist in the highest concentrations in the blood. This form has little to no biological activity. When you measure the 1,25 form of vitamin D the level is usually in the high normal range or even in the toxic range. This is the form of the hormone that is biologically active. Something funny is going on. A value which should be high, inactive vitamin D is low; a value which should be low, active vitamin D is high. The patients are definitely not vitamin D deficient. We better stop giving them all this vitamin D. What does vitamin D do in the immune system. High levels of vitamin D bind to receptors in immunologically active cells, including a group of cells called helper T cells. When these receptors are turned on by vitamin D it causes a response call a Th2 response and it shuts down something called a Th1 response. This is not as complicated as it sounds. Give me a minute. These two different helper T cell responses are associated with two different potential actions of this aspect of the immune system. The Th1 response is associated with chemicals and peptides which are pro-inflammatory and lead to an attack against intracellular germs, like Lyme L-forms. The Th2 response reduces inflammation and shuts down the germ killing response. These buggers are smart! Somehow, by altering the balance of a hormone called vitamin D, the germs have manipulated our immune system in a way which improves their chance of survival.
Normally this conversion of vitamin D to the active form occurs in the kidney. Some observers think that the germs are making this process occur on a cellular level. In other words, infected cells cause the change by some local effect.
Well, what do you do about it? And what does it have to do with a guy named Marshall. Dr. Marshall is PhD doctor, not an MD. He claims he cured himself of a disease called Sarcoidosis, not Lyme by using his methods. He argues that the same vitamin D abnormality is present in Sarcoid as well as other autoimmune, inflammatory diseases. He believes it occurs because a collection of L-form bacteria are in the host cells. The L-forms are not just Lyme. Other bacteria are known to be L-forms, including Chlamydia and Mycoplasm species. All of these L- forms together, conspire to cause this anomally which shuts down a critical immunological response. The theory then goes that if you can get vitamin D levels very, very low, then the Th1 response predominates and the Th2 response becomes negligible. Once this occurs, very low doses of antibiotics are all that is needed to kill the L-forms, which he and his followers claim are causing all the trouble. In order to make this happen you have to live a miserable cave like existence for about two years. You avoid all light and all dietary sources of D. Then you take a medicine which inhibits the vitamin D conversion which occurs in the kidney. When I read some of his reports I saw a claim that 30% of his chronic Lyme patients were cured. Heck, 90% of my patients are cured and I don't have to torture them. Most docs who treat a lot of Lyme have abandoned the so called Marshal protocol. But let's not throw out the baby with the bath water. I think Dr. Marshall makes some excellent points. One problem with the approach is that we clearly know that when treating Lyme patients, L-form infection is not the only issue. This is made clear by the remarkable effectiveness of drugs like Rocephin, which are unable to kill L-forms. It seems reasonable to assume that this aspect of the immune system normally functions with some balance between the Th1 and Th2 responses. Normal folks with properly functioning immune systems do not have super low vitamin D levels. So I think it is reasonable to not give extra vitamin D if the levels are normal. I think it is reasonable to reduce vitamin D levels which are clearly toxic. Such patients should avoid the sun and dairy products. I do wonder if bile acid drugs like Questran help lower vitamin
D. And in some patients the drug Benicar seems to help. It is really a blood pressure medicine of the angiotinsin receptor blocker class. But it has a nifty side effect of inhibiting renal conversion of vitamin D from the inactive to the active form. So it can help correct the imbalance of vitamin D seen in these individuals. One would hope that patients would fair better when there is a physiologic balance between these two aspects of this immune function. The truth is we still know very little about this. It is worth looking at. If nothing else, the mixed up vitamin D levels may have its greatest utility in helping to make the diagnosis of chronic Lyme disease. That's all for now.
I had a recent 25-D serum test showing 20 ng/ml which I'm reading is just shy of causing major trouble. I haven't had a 1,25D test.
I have been supplementing D3 for the past week (2000 IU then 3000 IU) and I'm surprised but feeling much better. A slight herx on upping dosage but a definite improvement.
If one improves taking D3 would that rule out high 1,25 D?
Would you have a 1,25D test run on your patients before allowing them to supplement D?
I've noticed at cpnhelp.org a lot of the Chlamydia Pneumonia folks are supplementing D3 (perhaps based on low 25-D alone).
I've read some Marshall stuff (Pro and Con) and am confused about what to do now.
P.S. You might be interested in Ken Lassesen's site. He has used Vitamin D to treat his CFIDS (may be lyme based?)
This makes so much more sense than the Marshall Protocol. I have to be concerned about some of the horrible stories i've heard and the fact that people are told they will feel better after 1 yr., then it extends to 3...with no progress...something is wrong. It's a lethal method for those who weren't deficient to begin with.
Thank you for keeping it "real".
oops...should read 'for those who were deficient'
I'm a little puzzled, do you know why supplementing VitD3 helps so many patients feel better if it's making the balance potentially worse?
I have chronic lyme. You are so incredibly right about your theory! My D levels were below 10 and my D, 125 levels were over 90! I avoided D and took Benicar to lowered it further. I did rife therapy and still do and now I am making a very very fast recovery, a recovery that did not happen with multiple and endless antibiotics. Kudos to you for figuring it out! Spread the word. Most doctors are hurting their Lyme patients by prescribing Vitamin D when they are already D, 125 toxic!
I was just diagnosed with late stage Lyme after being sick for five years. I've been taking vitamin D for five years also. I didn't know there was a connection. If I got tested for Lyme five years ago I wouldn't be so sick today. Ive been suffering all this time for nothing. And the vit D has been making me worse.
Also lyme suffers thier is some link that we all should get tested for a gene mutation that shiws in 70% in people and we dont even know about it. It is confusing but this mutation we need to complete the digestive cycle to remove the toxins. Ask your Dr for the****** MTHFR***** look it up and that might be the missing puzzle piece to the made ness in our body.. ****MTHFR****
I have to disagree. I relocated from NYC last February to Los Angeles and purposely got a lot of sun, an hour a day wearing only shorts, t-shirts, and no hat (I have a shaved head). I felt more tired for the first week and then my symptoms began to improve greatly - Less brain fog, better balance, less eye pain. I should add that I have never supplemented and my D levels were in the 14-20 range in New York before I left.
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This problem isn't caused by Lyme. It's actually a genetic mutation called VDR Bsm. It's part of the group of methylation mutations. Those with methylation mutations are those who are most affected by Lyme.
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