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 neurological symptoms of Lyme disease. I am concerned about what I have observed in patients from two northern Minnesota Lyme disease support groups who used 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:
Richard was a 38-year-old male, 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, 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 and 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. 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. 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.)
About this time, he tested positive for Lyme disease on the ELISA and two Western Blot tests. Richard was started on a very inadequate dosage of amoxicillin (250 mgs three times a day), and was then more or less abandoned by his family physician after three weeks of treatment. He was told by the 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, but, 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. Reluctantly and belligerently, he 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 about 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. He would treat with three weeks, then say, "Let's wait and see what happens when we go off for awhile". Richard's 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 wandered aimlessly around his apartment in his stocking feet or 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 to break his routine.
Richard was reluctant to concede that his supplements and dietary life style were failing him. He continued trying to enhance traditional medicines by adding his own supplement combinations. Richard was now mixing bulk vitamin C powder in juice and drinking eleven grams a day. Ever more rapidly, he became severely impaired in his speech, his memory, his judgment and his motor skills.
A little over one year from 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 vitamin 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.
This patient was a well educated man who, after reading books such as "Life Extension" and "Super Nutrition", was convinced that mega-doses of vitamins were not only beneficial to maintaining good health, but could help heal most sicknesses. He often talked about the role vitamin 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 (vitamin C attached to a fat molecule to make it more fat soluble in order to penetrate deeper into tissue and the brain).
At age 26, this former marathon runner started taking vitamin supplements. He started with a common dosage of 500 mgs vitamin C, 400 IU vitamin E and a high-potency multivitamin. By age 30, he started having shooting chest pains, arrhythmias, depression, extreme fatigue and malaise. His natural reaction was to increase his vitamin C intake to one 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 as well as other powerful antioxidants, including BHT, BHA, and selenium. These food preservatives were touted in the book "Life Extension" as having an anti-aging effect. His condition now worsened rapidly.
Over the next six months, this patient went from being functional and employed to a man barely able to lift his head off his pillow without blacking out. He had been tested for many possible disorders, including multiple sclerosis, before it was determined - almost by accident - that he had Lyme encephalitis.
He continued 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 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.
Bill was first diagnosed with neurological Lyme disease at age 55. He was always very active and in tip-top shape. Bill was a mail carrier and lean and trim from years of walking his route. Part of his daily regimen was to lift weights and take a handful of supplements, including a half gram or more of vitamin C.
Always an innately happy person, it was out of character for Bill to suddenly break down and weep or sulk in depression for weeks at a time. When he started forgetting peoples names and where he lived, it was clear that there was something wrong with Bill other than simple depression.
Finally, Bill was diagnosed with late stage neurological Lyme disease and was started on 28 days of Rocephin. His recovery was remarkable. 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 discontinuing IV Rocephin, however, Bill started to decline again. Once again disoriented, he would put canned goods in the refrigerator or wander the neighborhood aimlessly, only half-dressed in the winter cold.
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 that what he had was not Lyme disease. At the urging of his wife, Bill tried several more antibiotic regimens. Nothing seemed to have the same immediate and dramatic effect of Rocephin. After a year of this yo-yo approach to therapy, his doctor told him there would be no more antibiotics. Bill was left with no alternative but to try natural methods. He continued his sit-ups, walking....and vitamin C.
Another year went by. It was obvious to all that Bill was 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. He often got lost if left by himself. His wife had to arrange for both a house sitter and an attendant because Bill was unsafe at home alone. When Bill became paranoid and angry towards 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 when his in-home IV specialists requested that he not take any supplements during his therapy that were not ordered by his doctor..
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. What we do know is 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 vitamin C can make the pH more acidic, especially in tissues such as joints and the brain.
Some antibiotics, such as macrolides (doxycycline, Biaxin, Zithromax, erythromycin, etc.), are more effective in a slightly alkaline environment. Perhaps vitamin 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 are increased. Can vitamin 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 increased levels of vitamin C in the brain enhance the conditions for 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 diseases with mega doses of any supplement.
What may make sense for treating a cold may not make 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 the three cases I've described, in talking to dozens of other neurological Lyme patients who were taking vitamin C, it seemed - almost without exception - that the higher the dose of vitamin 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.
Please remember that not everything natural is good for you. Remember Socrate's last words, "I just drank what?"
Do you have a similar case history concerning an adverse outcome of Lyme disease that corresponds to a home remedy? If so, please send it to Tom Grier. You can use the contact address of LymeNet Europe and then it will be forwarded to him.