Oct 092007

The long pause in posting has been due to waiting to get into a new doctor. Certainly I was irritated over a couple of the recent things that had gone on with the previous doctor, but mostly I wanted someone closer than Pennsylvania. Close is still a relative term since the new doctor is about five hours away. I knew of this doctor before traveling to PA, he came highly recommended, and many in Dallas go to him; the concern, at the time, was if I had a large herx reaction what do we do, and who do we see since the doctor is so far away (as it turns out there has never been a herx even close to that severe).

Being a first visit I treated it more as a meet and greet (see if we liked him, which we did), and did not have my long list of questions. My big concern was that he agree that I had Lyme, etc., which he did (The hassle of having Lyme and the disease being dismissed all the time makes you a little paranoid), and have a good treatment protocol. He liked the previous protocol I had been on, and he is resuming where the treatment had stopped. He also was happy with the progress that I had made it such a short duration. I’m sure I’ll have have a litany of questions for the next time, like about the symptoms I am having now; but that can wait a month. There have been changes to the medications, but I will have to post those later since the list is not in front of me, and not that interesting.

Side Note: What I never got around to posting was that I never resumed the Levaquin after David’s post (I had only taken one pill as of my post so I wasn’t that into taking the drug again). I was heavily leaning that way anyway, and maybe the comment pushed me over the edge. Regardless, the doctor does not have me on the Levaquin for the current round of treatment; wanting to focus of the Lyme and Babesia for now.

Aug 072007

I am now wrapping up my final days of IV Clindamycin. For this medication the doctor normally starts at 300mg and then jumps to 600 and 900mg. Since I was doing “so well” he started me at 600mg, and then bumped me to 900 after a week. I think his caution was because the Clindamycin really hit him hard (and I guess other too), but overall it does not impact me nearly as much as the Rocephin. This could be a result of the drug and/or it could be that I progressed so far on the Rocephin. I am leaning towards the former. Looking it up it doesn’t look like it crosses the blood-brain barrier well (Cleocin Phosphate/Clindamycin), and since my symptoms have been mostly neurological the blood-brain barrier issue is the most likely cause for the reduction in Herx reactions. I will be switching in a couple of days to another drug (can’t remember the name, and that is with the memory improving ;-), and as I recall the new one will cross the blood-brain barrier. I suppose a good one to end the IV therapy.

Jun 212007

Old news, but the latest “testing” after one week of antibiotics (with the caveat that I had started the Buhner protocol over a month ago which certainly helped significantly – I’ll write about that later) is that I am making significant progress. My spleen and liver are almost back to normal size. Most significantly I can stand with feet together and eyes closed indefinitely without losing my balance. Before treatment I couldn’t stand more than about a second in that position before toppling. Additionally, I can now walk toe-to-toe without falling.

I had one day where I felt really good, and back to normal. Most days I just feel drained and blah. Most of the problems have been mental with fatigue, etc. I suspect there is a limit to the neurological issues since Rocephin does not cross the blood-brain barrier very well, and will get worse with a new antibiotic. There has been a recent resurfacing of some joint problems in my foot. I assume that this is related to Lyme die-off in that area.


Jun 062007

Image of the "PICC" line in left arm
Certainly long overdue the treatment has now begun, and while I may not find IV antibiotics the ideal it is how we are proceeding for now. A “PICC” line was inserted, but only 25cm worth (so not a true PICC line that goes almost to the heart), and so the line ends about at my shoulder. The line didn’t hurt going in, but ripping that tape off when they change the dressing does hurt (I should have shaved my arm first!). The first round of antibiotics is 2g of Rocephin. The doctor said he modulates the antibiotic about every two weeks. I get to go home with 6 days worth, and on the seventh day I have to go back for a dressing change and then to restock my supply. I don’t really know what to expect as far as Herx reactions, but so far I feel fine (but it is still pretty early in the treatment).

Apr 162007

The second doctor visit was a huge disappointment; especially since this one was supposed to be a “Lyme Specialist.” Also, he really enjoyed to hear himself talk, and it frequently involved sports (side note: I could care less about football, hockey, etc.) – I think he said 30-50 words for every word Eriksgirl+me said. He said that he tries to take a middle of the ground position in the “Lyme wars” (my phrase); but it is obvious he falls in the easily tested for and easily treated camp. Some tidbits from this visit:

  • The rash pictures I showed him he wrote off as just a weird rash, and that the rash is not Bartonella (WTF?!). He repeatedly said that the EM rash does not come back, even though he was repeatedly told that we thought it was Bartonella (also, I think there is a strain of Lyme that affects the skin, and the EM rash can come back). He noted on one picture that he was most interested in this one circular “rash”; since that would be more like an EM rash (ignoring the fact that I would have had Lyme for years at that point – but with no clinical history [see below] that might be a little hard). I decided to skip the detail that the “rash” he saw in that one picture was actually a compression mark from my working on the floor assembling an entertainment center.
  • He also wrote off the Bartonella rash because I tested negative for it on a blood test. He views those tests as very accurate. So Bartonella, and other co-infection, tests are accurate, but the tests for Lyme suck. Right. Furthermore, I thought I had read somewhere that the Bartonella test would be more accurate if you sent a tissue sample from the rash area; of course “more accurate” means that the test is not 100% accurate. Of course it is possible a round of antibiotics I took last year took care of the Bartonella since the rash hasn’t returned in quite a while.
  • He completely wrote off the CD-57 test. I can understand not using it as a diagnostic tool for Lyme, but he viewed it as basically worthless. His point was that until they can definitively prove nothing else lowers that value than he won’t use it for anything. I think a more balanced approach to the test would be the best policy, but what do I know.
  • He absolutely could not get over the Multiple Sclerosis diagnosis. He repeatedly commented that if you were diagnosed with MS by spinal tap and lumbar puncture (I was) than you have MS (as opposed to MRI alone). He tried explaining MS, and demylination, to me (did he really think someone treated for MS for 4 years didn’t know what the MS did to the Myelin?!); but it was clear I had a better understanding of MS than he does. Furthermore, the test run on the spinal fluid was testing for Myelin, and I do not think it would be surprising to find Myelin in the spinal fluid when there is any kind of brain infection since the infection would involve brain/spinal tissue.
  • He asked about current symptoms, but never took a clinical history. This borders on negligent. Because of this he never got the history of entering stage 2 and then stage 3/chronic Lyme. He never got an expiation of when I though I got Lyme. Lyme isn’t the flu; when treating a chronic illness I would think that clinical history is very important.
  • I can’t remember how it came up, but I asked about cell-wall-deficient form of Lyme. He said how can a cell live without a wall (true, but it is a different type of wall that exceeds my understanding of cell behavior). Eriksgirl noted about the CWD Lyme living within other cells. He completely wrote that off, and in general knew nothing about L-Form bacteria (including their existance).
  • I think he wanted to write me off completely, and he never said I had Lyme. He had to keep coming back to the C6 Peptide, but I think he wanted to write that off as a false positive too.
  • His treatment philosophy was to “let sleeping dogs lie” (He couldn’t remember the phrase, but tried several variations). I take this to mean that if there are no symptoms then there is no reason to treat. I am more of the opinion that you treat until there are no more herx reactions.
  • He listened to my chest, but never caught the Mitral Valve prolapse (I’m not sure he listened to my heart, so who knows what he was listening to). He also never checked to see if the Lyme had affected other organs (e.g. liver, spleen). Overall, it was a shoddy exam.
  • In the end I left with a 30 day prescription for 100mg Doxycycline, and if I had problems at the end of the 30 days he would give me another 30 days. I don’t know what would be done after 60 days. When talking on the phone he had said 4 months of IV antibiotics. I can only assume he thought all my problems were MS, and thus not really worth treating me.

Overall, this was like seeing the guy who graduated last in his class from medical school. Of course this doctor is the one who recommended MDLab which got my diagnosis so he isn’t all that bad. I’m sure Eriksgirl will have more to say too.