My Lyme History through Diagnosis & Treatment…
T This page tells the story of my Lyme experience beginning through the period of my diagnosis, then treatment — first with antibiotics, then without. My infection was probably many years before the actual diagnosis, and so my condition at that period of diagnosis was “tertiary”, or late stage. Treatment with oral antibiotics was for the most part successful however, for various reasons, I became unwilling to continue a lifetime treatment of strong oral antibiotics. So I stopped taking all such medication. As expected, all the symptoms returned. However, not willing at that point to resume antibiotics, I was open to various alternative treatment methods which I began to take. At this time of writing, I now feel better than at any point, either on or off antibiotics. It’s that history that I share here, divided into the following general time periods:
- Treatment with antibiotics
- The decision to stop antibiotics
- Treatment without antibiotics
- Concluding Thoughts
My diagnosis came quite by accident. Attentive to a radio advertisement because a friend of mine was its reader, he listed five major ways to know if one had Lyme. At this point, contrary to what one might expect, I was happy to hear of this likelihood because it explained increasingly nagging questions — all conditions that I had come to “write off” as growing old (I was 41 at the time), but when taken as a sum were just too much for even that explanation: Why did it hurt to move my fingers? Why, if I fell skiing, or if I banged my knuckles, would my hands hurt for months? Why, if I had my head turned to one side for too long, as in watching TV, was I unable to turn it back straight again? I was beginning to feel sure that something was not normal when, each day before going into the lunchroom where I taught school, I’d pause for a moment — hand on the doorknob — to quiz myself on the names of the same half-dozen co-workers I would each lunch with each day. (I never could get some of them.) And finally, why could I not concentrate, why could I only do two tasks in any given day, and why was I depressed so much? My friend’s ad struck a chord.
I answered the Lyme advertiser, The Lyme Care Center, to receive a 46 question checklist and some other materials, ultimately finding a “hit” for 18 out of the 46 symptoms (a significant number). I selected a physician for follow-up, John D. Bleiweiss, MD, after reading his essay from within the packet of materials. (Although the essay that I refer to in this link, I had actually gotten in his office later.) Of his Lyme-related diagnostic history, my symptomatic “yes” responses included the following:
- ringing in ears
- persistent sore throat
- less exercise ability
- diarrhea or intestinal gas (—related to Crohns’s distress)
- abdominal / stomach pain
- frequent urination (including after bedtime)
- urine stream starts with difficulty
These last mentioned two were to become significant within my treatment because these were my “non-psychosomatic related” benchmark indicators of improvement, which always revealed to me whether or not any treatment was working. Furthermore, it was this symptom that I remember as early back as seven years old. (I suspect that my infection was at that initial point or earlier: I had spent every summer since birth along with our family at the New Jersey seashore — an endemic area.) Continuing on with Dr. Bleiweiss’ list:
- back pain
- muscle cramps or aches
- crackling noise in joints (particularly neck for me — and this still persists today)
- joint ache or pain
- bone pain — hand arthralgias
- cold intolerance
- difficulty with memory
- problem with thinking clearly
- earache (another one since childhood)
- stiffness of joints in the morning, and finally (thank God, finally)
- light or headlights bother eyes
This last symptom also became a personal benchmark of effective treatment. Many of the other symptoms could have been explained in remission by psychosomatic expectation, or placebo effect, except for those two: light sensitivity and urine volume. These became my unofficial indicators of overall Lyme-related health.
An additional symptom not listed above included Bell’s Palsy. (On whichever side now I don’t remember, as it’s no longer visible in a mirror. Actually, not even the antibiotic treatment fully cured this one.)
Treatment with antibiotics
Part of the reason the Lyme had flared at that time (again, believing that the infection had lain resident for thirty-five years) was that I had entered a period of extreme stress. Circumstantial short night’s sleep several times per week for a year. (And this also becomes important in my discussion to follow of my current treatment.) Understanding that good health is related to good sleep, this became a priority.
I addition to this I began to take several strong oral antibiotics. The prescription at one point (we often tweaked the “formula”):
- Biaxin (clarithromycin); 500 mg x 2, every 12 hours
- Amoxicillin; 500 mg x 4, every 8 hours.
- Bactrim DS; every 12 hours
- Doxycycline; 100 mg every 12 hours.
- Probenecid; 500 mg x 2, every 8 hours.
And, to reduce the systemic fungal overgrowth common to Lyme patients:
- Sporonox; 100 mg x 2 for two weeks, then once per day for a month.
All in all, over 11,200 mg of antibiotics per day, not to mention the Sporonox or other non-medicinal supplements: Multivitamin, B-6, B-2, Ester C, Calcium, Magnesium, Zinc, Copper, as well as other treatments and herbs: acidophilus, for the antibiotics-affected intestinal flora; milk thistle, for liver; and who knows what else — Suma root, red something or other…
In consideration of all of this, I am grateful to Dr. Bleiweiss. I count him as among one of the best doctors in my experience (and I orbited the medical environment for a time). While the treatments were very strong, they worked. Within a month or two, I was again beginning to feel normal: neck stiffness gone, hand arthritis reducing, memory and concentration returning, and my depression and fatigue were gone. The polyuria (need for frequent urination with small volume) — which is incidentally due to a low grade bladder infection that is relatively common in Lyme patients — had gone almost overnight. And in addition to this (you may remember this also as one of my benchmarks), my visual sensitivity to sunlight was gone. I was amazed that I was able to be in the sunlight without sunglasses.
However, the benefit was beginning to plateau. And while I was better off than I was, I was beginning to be concerned about taking such a strong course of antibiotics permanently. With the understood need and priority of a strong immune system, I was concerned about the immune-weakening realities of long-term antibiotics.
So at one point, we experimented with the stopping of all antibiotics. Within two weeks, all of the symptoms were fully back. And I mean fully back. I was back where I started — except for one difference: I now knew that all of this was Lyme related, and not some inferior workmanship of God’s creation. Knowledge is power sometimes.
So, we resumed the antibiotic treatment for about another year. (So far, two years or so total.) However, my body began to rebel with the oral course. Initially, after taking a full dose right after a quick four-mile run, I began to vomit the capsules. Eventually even the taking of the smallest of the capsules caused me to become nauseous.
So I stopped again. This time permanently.
The decision to stop antibiotics
At this point, with no surprise, my symptoms returned. However, as I’d stated, knowledge is power. I knew that I had two choices: one on my right hand, and one on my left. Both carrying well known consequences. As distasteful as the symptoms were, it became my choice. The antibiotics remained in my drawer. However, this time I expected the onslaught. I worked to maintain good health: attempting to concentrate on good sleep and avoiding (to the extent that one is able) stressful situations.
These things maximized my health, and minimized the effects of the returning symptoms. Nonetheless, eventually (one year later) most of the full-blown symptoms had returned. The most irritating to me (and most tempting to resume antibiotics) was the lack of mental process. Even the fatigue was minor when considered compared to this one. The bumper sticker “Of all the things I’ve ever lost, I miss my mind the most.” was not funny to me.
It was at this point that a friend discussed with me a product that became the first of my alternative (and natural, and successful) treatments.
Post antibiotics: Successful treatment without antibiotics
The first of those treatments at that time, was a strong antioxidant called Pycnogenol. Though I would be doing things very differently these days, I attribute much of my recovery to this product. I had additionally taken an aloe vera drink along with it, and had come to find it worked synergistically. Within a couple of months, I was again experiencing a return to health. The fatigue, depression, arthritis, and polyuria were beginning to go. After about a year, I experimented with a good health food store multi-vitamin, 1-to-3,000 mg of vitamin C, B-complex, and a host of other natural and “alternative” products, and discuss these things at that above link. And though now dated, for those who want to see that discussion, I’ve saved an archived page of this history.
On the combination of various nutrient therapies, although not entirely out of the woods, I did feel better than at any point even on antibiotics. And at this point of the writing of this site, had been without antibiotic (or medical) treatment for three years.
All in all, these things have worked remarkably to restore my health. I once again have no taste for sweets, and I’m resuming exercising. Now if only I can stay off the computer late nights, and get some proper sleep!
Lyme is now behind me, and I have some interesting perspective. Of all of the treatments I took, likely none of them — with the possible exception of Pycnogenol (which I did continue to take for twenty years, until finding a superior replacement) — actually attacks the Lyme spirochete directly. They all work otherwise to increase overall good health. Now, this by itself is not to be minimized. I suspect that this is the precise reason why my infection lay dormant for 30-some years — my physical condition was strong enough to more than overcome the infection. So this alone is a sufficient, good goal — restore good health. If, in my case, stress, no vitamins, bad diet, no exercise, and insufficient sleep are what enabled the appearance of the Lyme symptoms, well then, these things are all reversible!
In the many years since, I’ve come to understand that indeed, the most important thing is to strengthen the immune system. There are a number of ways to do this, and a number of aspects to it, all of which I now discuss in the Treatments section.
As of this section of writing, now in 2016, I am likely healthier than at any point in my life. A couple of years after I had composed the above page, I had posted a then-update, in 1998. In an interest to keep the page short, I’ve condensed it into a tab below. But if you’re interested to read this, simply click the tab.
My late 1998 update; click if you care to read this interim history.
Update: December, 1998
Lest this page become a Worldwide Cobweb, I wanted also to include updates from time to time on my history. The most recent of what I’ve written above is now about two years past, and I thought it would be fair — and informative — to give the update as to how I am doing at this point. I am even more so from when I last wrote, better and better in health. Do I dare use the “cure” word? No, not yet; however, I do now put my health (albeit arbitrarily) in the the above 90% ranking — good enough for me for all but perfect function. I’m now almost five years antibiotic free, and (more or less consistently) feeling better and better each day. I am once again doing vigorous exercise — something that I had been trying (unsuccessfully) to do for twenty years. A typical week might now include some seven mile roller blading runs, and some twenty mile bike rides (at a very exertional level).
I’d like to share a thought on this, I believe actually that it’s the exercise that has made all the recent difference. It’s very well known that aerobic exercise kills off the spirochete load (higher blood oxygen percent kills off the spirochete), but as most of us know, for a lyme sufferer, it’s all but impossible to do such exercise. And this was the case for me, too. But I now must say that doing so pays big dividends. This past summer, I decided that if I couldn’t do normal exercise, I was going to at least take a walk around the block. The increased blood oxygen level from even this small amount of exercise made me feel significantly better the next day. And so on and on. Two short months later, I was at the levels described above. I strongly encourage anyone who is able, to at least get some fresh air. Take a walk around the block. This may do far more for you than you realize.
To recap, at the point where I quit antibiotics, even after beginning the supplements (described in the Treatments section), my health continued to dip for a couple of months. It took this length of time even begin to see a slowing of the decline of further decrease in health. But, at that point, things began to level off, and the return to health was gradual, but consistent — and, continuing so, up to this point, now five years running. What I’m saying here is that if one chooses to incorporate supplements (either some of the ones I’ve described, or others), be prepared to be diligent for several months. If you see a small increase, understand that as small as it may seem, it is cumulative. In other words, stay the course. The recovery may be only in small steps, but every gradual bit adds up to eventually become a lot. Also, although each of the supplements that I described helped in their area only a little, each area (Pycnogenol here, [unnamed product] there) added it’s previously unhelped part, again summing to a significant health restoration.
And, although this text is getting long, for those who may not have seen this on the title page, this is worth repeating: In all of this I am not advocating the complete non-use of antibiotics.. I am personally against only the long term (i.e., permanent) use of antibiotics. Such use will eventually destroy the immune system, which was designed for this very purpose. And I believe that a good immune system has far more value than any anti-biotic ever could. In my mind, the prime goal is not to kill off every invading organism, but to do whatever it takes to rebuild and strengthen the immune system so that it will take care of this difficulty itself. (Thus is the value of the better sleep, the vitamins and supplements, the reduced stress, etc.) However, I also understand that there is a time where the infection “load” is greater than the body’s ability to fight it off — and to continue further down this path would mean destruction to the body. For this purpose, antibiotics have a critically important place. But only on a non-permanent basis. Also, in the case of a “new” infection, there is only one time when it’s possible to completely eradicate the disease (and this with antibiotics), and this is it. Anyone who’s had a recent infection should not delay even in the least by experimenting with alternative treatments. Go find a good doctor as quickly as you can, and get a proper (four to six week) antibiotic treatment. You only get one shot at it — do it with a certainty!
As I had written above, I’m healthier now than I have ever been. My diet is better; sleep and energy and neuro function are better; and I’ve not been on any medications since. In fact, with any of the recommendations that I now discuss in the Treatments section, I give this caveat.
I regularly do significant exercise and workouts. And though it took an extended length of time to work up to it, I now compete twice a year in Olympic-distance (mid-level) triathlons. So yes, the lyme is behind me. I am still very diligent about the pursuit of health through lifestyle, certain supplements, and other modalities — and in the end, in a weird way, I am grateful to the Lyme. Were it not for this, I am sure that I would not be in this quest, or in this place. Without a doubt, there are permanent issues: my neuro-related memory and processing is certainly affected, any kind of joint trauma comes more quickly, and takes longer to heal. And it is likewise with muscle injury. And in all of this, I’ve learned a ton about health — what diminishes it, and what restores it. I share an extensive amount of information in this area now, in the Treatments section, which is really a category title for an ever-growing number of health-pursuing posts. As this remains to be a passion area, I’m beginning to understand all this at an increasing rate of speed. I highly advocate viewing this section.
Feel free to keep in touch with me through the recommendations of that page, or with any questions you may have concerning your own walk through this process.
And, if I can make just one more unabashed plug, please also see the Survey page and share your information with us — we are now beginning to turn our attention toward a global understanding of what works — and to publish this information, once it’s in.