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CHRONIC TONIC posts on Thursdays at 9 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them.  Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist). In addition to our weekly diaries, please join us for ongoing conversations at the Kossacks Networking site.

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Please visit the Thursday Night Health Care Series:
Thursday Night Health Care: The Lost Decades

   Last week I climbed aboard a Greyhound and headed southwest for an appointment with tick borne disease treatment specialist Charles Crist. I’ve wrestled with symptoms dating back to the summer of 2007, symptoms so severe I was out of work for eighteen months and they’re things that continue to trouble me even after returning to work in January of 2009.

  I’ve read a good bit of the published work and a lot of web sites about Lyme and I must say that I’m very, very impressed with the information, testing methods, and attendant set of treatment protocols provided by Dr. Crist.

    Today we describe the constellation of tick borne illnesses in this country with the blanket term of Lyme disease. The name Lyme came into popular use after children in the Old Lyme, Connecticut area began appearing with arthritis like symptoms thirty years ago. Based on my conversation with him I gather that Dr. Crist dislikes this name for a couple of reasons.

    Like many other physicians working on the emerging tick borne diseases he has been brought before the state medical board at the instigation of the corrupt health insurance industry lapdog known as the Infectious Disease Specialists Association. His solution to their concerns over Lyme disease treatment was simple – "I don’t know anything about that, I treat Master’s disease and erhlichiosis." The IDSA has been spanked by the Connecticut Attorney General in the form of an antitrust suit in 2006 and there is continued action against this death committee, action that at times needs our backing in Congress.

   Unstated but implicit in the volume of instructions and protocols I was handed is the fact that tick borne infections often have multiple actors and that treating the source is only half the battle. Fully half of the information I’ve been presented has to do with returning patients to functionality, of that information about half of it has to due with direct disease symptoms, and the rest is specific remedies for the troubles that arise during the long, low intensity courses of antibiotics.

  The treatment of the bacteria borreliosis, erlichiosis}, [ tularemia, and the protozoan babesiosis, involves the possible application of Flagyl, Biaxin, Mepron, Zithromax, Plaquenil, Clindamycin, Tetracycline, Doxycycline, Tinizadole, Nystatin, and perhaps some others I missed when scanning the documentation. The Crist Protocols are a mix of techniques for using these drugs and they require active participation of the patient in monitoring what is working. I asked if I had to keep a notebook and Crist allowed as how this was probably a very good idea.

This is what $1,050 at the drug store gets you. I think it’s a large slice of the five months worth of treatments between now and my next appointment, but I’ve got to read the protocols a little closer to be sure.

  I mentioned that I was a journalist with a bit of a reach and that I wanted to do an article on the good doctor and his methods. I think he’s been burned before – "A lot of people want to publish my work on the internet" was all he had to say. Throughout the various documentation are disclaimers – Dr. Crist is at the forefront of treating tick borne infections. He offers many statistics about the 7,000+ patients he has seen in the last two decades, but makes it clear that he hopes for those doing clinical studies to come along behind to confirm and then improve upon his methods.

  I’m going to be a lot less shy about the functionality stuff. Much of what Dr. Crist has to say here I’d already tried, thanks to the urging of a former girlfriend, a massage therapist with an interest in alternative therapies. He ranks the top four problems in order: pain, fatigue, cognitive problems, and eye symptoms.

   The biggest thing I see in his pain recommendation is the negative statements regarding non-steroidal anti-inflammatory drugs. Long term use of these drugs can damage joints, they affect intestinal permeability, and in general appear to mask symptoms in the moment while making them worse over the long haul. I’ve already written a bit about Adventures in Chronic Pain in another Chronic Tonic. This one is a biggie – chronic pain changes not just your view of the world but the world’s view of you – my co-workers were delighted when I finally submitted to a low dose non-narcotic painkiller a few weeks ago, lining up to have me fix things they’d let slide because I was such a grump.

  Fatigue, my old friend, is the reason I was out of work from July of 2007 until the beginning of 2009. I would get up, eat something that hadn’t troubled me two days before, and I’d be out cold two hours later. I wasn’t tired, I was fatigued - tiredness not tied to physical effort nor time awake. I’d been put on an oral B-12 supplement at the same time I got the pain meds I describe above and it worked fine. Dr. Crist’s nurse injected me with a B-12 supplement while I was at his office and I have a prescription for this so I can inject myself at home. Along with B-12 there were a basketful of other natural anti-fatigue measures mentioned. Curiously absent was a personal favorite of mine – SAM-e.

   Cognitive problems went hand in hand with the fatigue, at least for me. If I were up moving around I’d be OK, but detailed analytical thought, which was how I made my living, was simply out of reach. Having been treated for nine of the last twelve months this has largely cleared up for me – the occasional trouble I’ve had has been largely physical. The B-12 supplements cleared the last of my grief. Dr. Crist’s recommendations here are brief – Cogimax or Membrin. These I don’t know much about this part of it and I get the feeling the general fatigue remedies really help in this area.

   I’d been having vision troubles which I attributed to the hydroxychloroquinine I’d been taking on the orders of my previous Lyme specialist. Turns out that this is common for those with tick borne infections and drops of sulfacetamide will clear the troubles right up.

   The treatment itself causes follow on problems – eliminating tick borne bacteria and protozoans will also get all of your normal internal flora, too. We all have a little yeast and without the bacteria there it simply rises up and takes over your system, contributing to the first three of the four major functionality problems I outlined above.

  Yeast per Dr. Crist’s methods is treated with nystatin, which kills it in your intestines, or possibly with Diflucan, which kills it everywhere in the body. I’d tried a couple of these things for the case of thrush I had and I finally ended up using a natural solution – a south seas herb named horopito. This stuff is pretty much like swallowing napalm as far as yeast is concerned. I felt dramatically better at my third dose just twenty four hours into a week long regimen. The link I provided is the actual company I used and a couple of friends have used them, too, with good effect.

  Eliminating yeast is just half the battle. There are many, many probiotic products out there but VSL3 in particular is worth a look. This set of bacteria has been developed and tested specifically to clear up the symptoms of Irritable Bowel Syndrome. I know one Kossack who had a case of this to the point of starting to have marrow damage and blood abnormalities. Two days of VSL3 pretty well whacked the symptoms and I’m told that this person’s quarterly blood tests have actually begun to improve, much to the attending doctor’s amazement.

  I really wish I could share the details of all of these protocols and the attendant rules of thumb that Dr. Crist has painstakingly documented, but I’m not a doctor and victims of tick borne diseases need both the prescriptions and the expert supervision of a physician trained to handle these complex, slow moving infections.

  Access to the needed skills is about to start improving, because as you’re reading this Chronic Tonic Dr. Crist is completing his first day’s work in his new office in Columbia, Missouri. He’s moved there from Springfield because in addition to his practice he’ll be teaching the treatment of tick borne diseases at the University of Missouri Medical School.

Othniel Update from his partner:

It has been a busy day - surgery only took about 30 minutes - the doctor would have preferred to find an remove a more defined abscess but because of the fluid from the swelling it was more diffuse. She believes that it will drain a lot in the next day or two but it should be fine.

Othniel is in very good spirits tonight - better than I have seen in a month or more - very alert and has made some short walks on the floor. I will spend tonight at the hospital with him just in case.

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Originally posted to Chronic Tonic on Thu Sep 10, 2009 at 06:00 PM PDT.

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