Speaking anecdotally it has been my observation going back almost 13 years that Lyme patients with a severe ALS/MS-like presentation almost always seem to do worse on high dose vitamin C. I wrote a brief article about it for a newsletter. I think Vit-C should be studied in acute inflammatory stages of Lyme where demyelination is suspected. We know Vit-C plays a role in certain cytokines, interferons, and a neurotoxin called quinolinic acid. Vit-c also plays a role in building connective tissue and lowers blood and urinary pH in high doses.
I myself take largerer than normal doses ofe: magnesium, Vitamin B3 Niacin and avoid B-6, Vit-C and tryptophan. Until a study shows otherwise, I trust my observation in MS-Lyme patients that Vit-C almost always makes things worse, and these patients usually improve when they disconinue maga doses of Vit-C.
Vitamin-C a Lyme Patient's Friend or Foe?
By
Tom Grier
Observations from a Lyme Disease Support Group on Vitamin Supplementation
When patients get sick and stay sick, out of desperation they may turn to a variety of other treatments. With virtually no peer review medical studies to verify the effectiveness of home remedies against Lyme disease, patients are left with mostly anecdotal accounts and personal testimonies of what works and what doesn't.
I would like to submit a caution about the overuse of one such home supplement that I think may exacerbate severe neurological symptoms of Lyme disease. (Symptoms such as pressure in the head, radiating pain, and tingling in the arms, legs and scalp, optical neuritis, and severe memory loss)
I am concerned about what I have observed in patients from two Lyme disease support groups in Northern Minnesota using mega doses of vitamin-C to treat their Lyme disease.
Let me first give you a brief account of three patients who were big believers in using vitamin-C to ``boost'' their immune systems.
Patient #1) Patient number one was a 38 year old male who was a Special-Ed teacher, who all of his life was fastidious in his diet and exercise regimen. He was what you might call a health-nut. Every day he would exercise in the morning, and then fix himself herbal teas and take an entire regimen of vitamin and herbal supplements. He adhered to a very strict macro-biotic diet. He favored eating whole grains, home grown sprouts, and juiced his own fruits and vegetables. He also took mega doses of vitamin-C several times a day.
When Richard began experiencing loss of coordination, extreme muscle fatigue, muscle twitches, memory loss, night sweats and slurred speech, he was tentatively diagnosed with Amyl Lateral Sclerosis ALS or Lou Gherig's Disease. His immediate response was to turn to natural healing methods and he increased his endeavors to boost his immune system through use of several nutritional and herbal products. Most prominently he used Echinacea and vitamin-C. He went from two grams of vitamin-C a day to four grams a day. His neurological symptoms not only continued to advance but his symptoms now started advancing at an alarmingly fast rate. (We have also observed that in some Lyme patients, using Echinacea can exacerbate arthritis.)
It was about this time he tested positive for Lyme disease on both the ELISA and two Western Blot tests. Richard was started on a very inadequate dosage of amoxicillin of 250 mgs three times a day, and was then more or less left abandoned by his family physician after three weeks of treatment. He was told by an apprehensive physician that what was left was ALS and not Lyme disease. Richard responded to this by increasing his Vitamin C to six grams a day.
His family and friends were aware of Richard's disciplined home-remedy self-treatment efforts and despite their pleas he did not cut back. In fact he seemed to become more resolved than ever to try to blast his condition with supplements and an organic diet.
After seeing a Neurological specialist who was well versed in Lyme disease, Richard was placed on a stronger antibiotic combination regimen. To Richard this was like poison to the body and reluctantly and belligerently tried the new drug regimen. Without informing his doctor he did what he felt was the best thing to detoxify the antibiotics, he increased his vitamin-C to nine grams a day. He did not tell his treating physician about his exuberant use of home therapies, nor did he voice his strong apprehension in taking high dose long term antibiotics.
His physician in Duluth was reluctant to follow the heavy antibiotic regimen that Richard's out of state neurologist had suggested. For the next year his family physician put Richard through an on again off again regimen of treating for three weeks and then, ``Lets wait and see what happens when we go off for awhile'' approach. His health declined rapidly. His speech was now indiscernible, and his mobility was greatly impaired. His mother had to force him to stop driving.
Richard now wondered aimlessly in his apartment in his stocking feet and sandals which were often soaking wet from water spilled on his kitchen floor. His feet were severely infected with athletes-foot disease.
Despite a noticeably rapid decline in his health, Richard seemed incapable and unwilling of breaking his routine.
Richard seemed unwilling to concede that his supplements and dietary life style were failing him and he continued to try to enhance traditional medicines by adding his own supplement combinations. Richard was now mixing bulk vitamin-C powder in juice, and drinking eleven grams of vit-C a day! Richard ever more rapidly became severely impaired in his speech, his memory, his judgment, and his motor skills.
In a little over one year from his diagnosis of having positive serology for Lyme, he was completely incapacitated by his disease. He was resolute to the end that his macro nutrition diet followed by fasts, and vitamin supplementation were the answer to his health problems.
Did vit-C contribute to Richard's extremely rapid decline and worsening of symptoms? There is no way to know for sure but two other cases had similar scenarios.
Patient # 2) Patient number two was a well educated man who was convinced after reading books like ``Life Extension'' and ``Super Nutrition'' that mega doses of vitamins were not only beneficial to maintaining good health but could in mega doses help heal most sicknesses. He often talked about the role vit-C played in building collagen and connective tissue and repairing the body. He was a big advocate not only taking large daily doses of vitamin C but also taking a non-naturally occurring fat soluble form of the vitamin called ascorbyl-palmitate. This was vitamin C that was attached to a fat molecule to make it more fat soluble to penetrate deeper into tissue and into the brain.
At age 26 this former marathon runner started taking vitamin supplements. He started at a common dosage of 500 mgs vitamin C, 400 IUs of vitamin-E, and a high potency multi vitamin. By age 30 he started to have shooting chest pains, arrhythmias, depression, extreme fatigue and malaise. His natural reaction was to increase his vitamin-C intake to a gram a day.
Six years later the patient had profound exhaustion, memory problems, worsening depression and more heart arrhythmias. He now started taking two grams of vitamin-C a day and added 200 mgs of ascorbyl palmitate, and other powerful antioxidants including BHT, BHA, and selenium etc. These food preservatives were touted in the book ``Life Extension'' as having an anti-aging effect. His condition now worsened rapidly.
In the next six months this patient went from being functional and employed, to a man barely being able to lift his head off of a pillow without blacking out. He had been worked up for many possible disorders including MS until it was determined almost by accident that he had Lyme Encephalitis.
He continued to keep taking vitamin-C and other supplements throughout his first three months of antibiotics. After failing to improve he discontinued all supplements and promptly started to respond to antibiotics. It took another six months of antibiotics before the pressure in his head had finally disappeared. He still suffers from extreme exhaustion, atrial fibrillation, depression, and lingering memory problems, but all of his symptoms have dramatically improved. He no longer takes vitamin-C supplements but does take a multi-vitamin and eats citrus fruits every day.
The third patient was first diagnosed with neurological Lyme disease at age 55. Bill was always very active and in tip-top shape. Bill was a mail carrier and was lean and trim from years of walking his route. Part of his daily regimen was to lift weights and to take a handful of supplements including a half a gram or more of vit-C.
Always an innately happy person it was out of character for Bill to suddenly break down and weep, and to sulk in depressions for weeks at a time. When he started forgetting peoples names and where he lived it was clear that there was something more wrong with Bill than simple depression.
Bill was diagnosed by a Duluth neurologist with late stage neurological Lyme disease and was started on 28 days of Rocephin. His recovery was remarkable and in about six weeks he was close to his old self. He resumed his daily regimen of lifting weights and taking vitamin-C. Shortly after his discontinuing his IV Rocephin however Bill started to decline again. Once again he was putting canned goods in the fridge and wondered the neighborhood aimlessly in the winter only half dressed.
His doctor started him on doxycycline 100 mg BID but it did nothing to abate his worsening symptoms. Because he failed to respond it was assumed what he had was not Lyme disease. At the urging of his wife Bill tried several more antibiotic regimens but nothing seemed to have the same immediate and dramatic effect of Rocephin. After a year of this yo-yo approach to therapy his doctor said no more antibiotics. Bill was left with no alternative but to try natural methods and he kept up with his sit-ups, walking, and vitamin-C.
Another year went by and it was obvious to all that Bill was now worse than he had ever been. Although he smiled a lot and quietly acknowledged people politely, he was in constant pain and was easily confused and frustrated by the simplest of things. His wife had to arrange for a house sitter and an attendant because Bill was unsafe at home when left alone and often got lost if left by himself. When Bill started getting paranoid and angry at the strangers in his house, his wife had no choice but to place him in a nursing home.
Years later Bill is now bedridden, sedated, unable to recognize most people and still taking 500 mgs of Vitamin-C a day. His only truly lucid time since his diagnosis was shortly after his IV Rocephin when he was not taking any vitamin-C. This was because the in home IV specialists requested that Bill not take any non-doctor ordered supplements during his therapy.
Did this person make his neurological Lyme disease worse with vitamin-C? Did vitamin-C inhibit the success of later treatment with antibiotics? Without a good animal study it is impossible to know for sure?
What mechanisms are at work? We don't know what role Vitamin C might play in the exacerbation of Lyme disease symptoms, but we do know that in the laboratory Borrelia burgdorferi prefers to grow and reproduce in a slightly acidic environment. While our body tries to closely regulate blood pH with a buffering mechanism, mega doses of vit-C can make the pH more acidic especially in tissues like the joints and brain.
Some antibiotics like the macrolides (doxycycline, Biaxin, Zithromax, erythromycin, Ruulid etc.) are more effective in a slightly alkaline environment, so perhaps vit-C inhibits the effectiveness of some antibiotics?
A food source for the Lyme spirochete may be one or more of the molecular components that make up human collagen and connective tissue. Specifically N-acetyl-glucosamine has been determined as a likely food source and the bacteria may possibly even bind to this molecule during infection. Collagen production in the human body is enhanced by the addition of vitamin-C, this is why cuts and wounds heal faster in studies on animals when levels of vitamin-C levels are increased. Can vit-C's effects on collagen production contribute to a more favorable environment for the spirochete? We don't know but a well designed animal study could probably give us some answers.
Another factor in worsening neurological symptoms may come from the fact that the brain actually expends energy to get higher concentrations of Vitamin C across the Blood Brain Barrier. The brain needs higher levels of Vitamin C than any other tissue. Can the increased levels of vitamin-C in the brain be enhancing the conditions for a Lyme infection to thrive?
We don't have any animal or human data to compare, but we do know that vitamin-C plays a small but significant role in the production of a neurotoxin called quinolinic acid. Even modest increases in quinolinic acid can cause brain neurons to repeatedly fire. If left unchecked, elevated quinolinic acid levels can lead to demyelination and cell death. This is the main cause of dementia in late stage AIDS patients. At least one study has suggested that quinolinic acid levels in neurological Lyme patients can be 40x higher than normal. Could these levels go higher if the patient takes mega doses of vitamin-C?
In a large patient study that reviewed vitamin supplement use in AIDS patients, it was found that not only did zinc not help improve symptoms, but any amount of zinc actually correlated to a worsening of the disease and a shortening of life. Normally zinc is considered an immune boosting supplement, but zinc supplementation is now contraindicated in AIDS patients. Since we know from this experience that some supplements can exacerbate and worsen symptoms in certain diseases (with dire consequences), then we must use caution in considering treating diseasee with mega doses of any supplement.
What may be good sense for the treatment of a cold, may not make good sense for an AIDS patient or perhaps even a Lyme patient?
These are fairly broad speculations, but there is growing anecdotal evidence that vitamin-C and perhaps some other mega nutritional therapies are either inhibiting the healing process, increasing symptoms, or even worse exacerbating the infection. Until a well designed study chooses to look into the role vitamin-C and other supplements play in this infection, we will never know the true role that mega nutritional supplements play?
In addition to these three local cases I have talked to dozens of neurological Lyme patients who were taking vit-C, and it seemed almost without exception that the higher the dose of vit-C, the more severe their symptoms were. This is anecdotal evidence only, but considering the tragic outcomes I have seen, I feel that the consumption of unusually high doses of vitamin-C by neurological Lyme patients should be reconsidered.
Since this article was first printed I can add the case histories of at least three more MS-Lyme patients and one ALS-Lyme patient. My personal belief is that in long term chronic Lyme, Vit-C is not very detrimantal, but in acute neurological episodes that may be considered an acute inlammatory state of the CNS, I feel Vit-C is detrimental and not helpful. This may be due to the potentiation of Quinolinic Acid in the macrophage in the brain?
I know this is not a popular stance within the Lyme community but I find it hard to ignore patients improving when mega doses of C are discontinued.
TOM G
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