Sep 192007

As a little background I spent 3 months in PA being treated for the Lyme, etc; but more on that another day. Regardless, after 9 days of waiting (5 persistently trying, 4 giving up) I finally got a phone consult with the doctor. During the wait I stopped Levaquin because I could not get confirmation from the Lyme doctor that it was safe in light of the seizures (the drama and irritation surrounding the delay are not worth going into).

Moving on, his diagnosis was that the seizures were caused by demyelination (lesions) which was caused by Bartonella (and the Bartonella toxin). Seems reasonable since my neuro thinks the seizures are caused by a lesion too. The Lyme Doctor thinks that within a year the lesions will heal and the EEG will return enough back to normal to no longer need drugs. For now he wants me resuming Levaquin, but on a lower dose (exactly why I wanted a call-back).

He thinks Bartonella (probably limiting to Bartonella with neurological involvement) carries about a 20% incidence of seizures. Of the types of seizures Tonic-Clonic (Grand Mal) are the least common; lucky me. The Lyme Doctor said he has Petit Mal (Absence seizures); which he thinks we saw one day (and we might have). He added that the absence seizures are the most common for Bartonella related seizures. He also said that had I gotten a SPECT scan, like he had wanted, that probably would have shown the abnormalities that lead to the seizures and he would have put me on Depakote (the drug he takes for his seizures) preventively. First, I would probably need something better than a SPECT scan to agree to start taking anti-seizure drugs preventively; maybe with an EEG, but that would probably require the neurologist agreeing too. Secondly, the reason he said he wanted the SPECT scan was to check the blood flow in the brain; which we can assume is impaired and I assumed, probably correctly, that the SPECT scan was going to be used as a tool to track progress. Had he mentioned this reason maybe I would have gotten the SPECT scan; though an EEG would probably have been better and more effective (not that I am suggesting getting an EEG preventively). I personally think the SPECT scan is his scan of choice, and that reviewing my old MRI images would have been more than adequate. Especially since I have had lesions where he suspects the seizure is starting.

On a side note, as we were going over my seizure clinical history today we covered the hospital neurologist. This neurologist was insistent that based on my EEG that I had epilepsy my whole life. He was certain that I had definitely had seizures before, but maybe they were just staring spells. We assured him that was not the case, and there had been no seizures. He did not believe us. At this point he had basically called me and Eriksgirl idiots, and/or liars. One has to think that absence seizures are awkward and obvious as you don’t respond, etc.; while you may not think seizure then it would be memorable when asked about them later. With his winning bed-side manner he actually thought that I might come to see him for my seizures after I got out of the hospital. Apparently, we are not as big of idiots as he thought.

Sep 092007

Last Tuesday I had almost back-to-back seizures and got to spend a few days in the hospital. I was already displeased with the gout being “one more thing” so the seizure definitely kicked it up a notch. Unfortunately, there is no clear cause, but the Levaquin definitely played a role since it lowers your seizure threshold. Secondarily, I suddenly stoppled the Ambien CR because I wanted to get off that drug. Unfortunately, suddenly stopping the Ambien can cause a seizure; not that I would have taken that too seriously before the seizure, but having a seizure the next day after suddenly stopping doesn’t look good (of course I’m back on the Ambien CR so I need to ask the neuro how I can get off safely on my next appt). Of course, because I didn’t take the Ambien that night I didn’t sleep well, and that also increases the risk for a seizure. I started a new antibiotic the night before the seizure (Septra DS) and I didn’t react well to the drug (shortness of breath, etc. so maybe an allergy); so that could also have played a role. All of those drug interactions before even considering that Lyme and Bartonella carry an increased risk of seizure. I went to see my neuro and he thinks that this was probably an isolated event and in 6-9 months can probably wean off the anti-seizure medication (pending, I’m sure, a lot of EEG’s). I guess at least I won’t have to worry about driving for a while (TX state law is no driving for 6 months).

Since writing the above (I’m really slow on posting lately) I’ve had another EEG. The tech got nervous after the strobe part of the test and would not proceed with the hyperventilation part of the test. The tech apparently thought that after the strobe results I was too high of a seizure risk for the hyperventilation test. Of course I didn’t have a seizure during the full EEG (hyperventilation and all) a matter of hours after the first seizures, and I am sure I was at a higher risk then (I’ve been on anti-seizure drugs since then so that has to help some). Overall, I think the tech was a little high-strung, and overly cautious. On the other hand if I had seized I am sure the 6 month no-driving clock would have started over; so maybe it is best to be a little more cautious. What I am curious to see is if my neuro is still optimistic about this being an isolated event after the latest EEG. On the other hand I am sure the Levequin is still playing a negative role so I am more interested in an EEG once I am off that antibiotic.

Sep 032007

I wrote this a couple of weeks ago and forgot to post it.

I was recently prescribed Azithromycin to treat Bartonella. This time it will be 30 days of 500mg. This treatment jogged my memory that my Bartonella rash disappeared to never return after a routine treatment with Azithromycin (the z-pack; 500mg for 3 days) by my regular doctor. I had wondered if this treatment cured me of the Bartonella. Unfortunately, I think one of the classic symptoms of Bartonella is shin pain, and I started having some once starting Levaquin (see more below). Of course on the negative side is the Canadian Lyme Disease Foundation: “In the co-infected Lyme patient, eradication may be difficult.”ref. regardless, if a significant dent was made with a couple of days worth of treatment I am hopeful that a more concerted treatment with Azithromycin and Levaquin will take care of the problem.

The shin pain from Levaquin is a little cause for concern because I believe that the drug carries a black box warning for permanent tendon damage. And from the label: “Ruptures of the shoulder, hand, Achilles tendon, or other tendons that required surgical repair or resulted in prolonged disability have been reported in patients receiving quinolones, including levofloxacin.” I personally think the shin problem is disease related since I seem to recall it happening before any treatment began. As it turns out the pain disappeared as soon as it came so no worries from the Levaquin and my tendons.

Mar 192007

As promised here are my impressions of the Lyme. The Lyme does explain some very weird problems that I have had, and the Multiple Sclerosis designation could not explain. I would have gotten infected with Lyme in late 2001 during a visit to New Jersey/Pennsylvania (almost 3 years before my diagnosis with Multiple Sclerosis). I do not remember a tick bite, and I certainly did not get the Erythema migrans (bulls-eye) rash. A few months later, early 2002, I began a couple month period of daily vomiting, extreme fatigue, and fever. I went to the doctor, and tests were run (I’m sure not for Lyme, not that it would have showed anything), but the diagnosis was that I have an infection, and it will just have to run it’s course. That period of illness was 2nd stage Lyme, and I perfectly fit the pattern. Eventually all symptoms went away, and we just assumed that the doctor was correct about the illness passing. Six months later I did have some problems with my feet with both pain in the soles as well as numbness. I blamed it on some new inserts that I was using for my flat feet (even though we were told it would not cause that problem). I then went dormant again for a about a year until “the beginning of Multiple Sclerosis.” Other unique symptoms that cannot be explained well by Multiple Sclerosis (excluding the Bartonella Rash) is that periodically I will have serious joint pain at the knees and ankles. Technically the Lyme does not rule out Multiple Sclerosis (though one could say it is just Multiple Sclerosis with a known cause since I have suffered the brain lesions). I personally suspect it is just the Lyme because the MS has already been very mild, and to have two neurodegenerative diseases that are this mild when combined has to be pretty unlikely.

I cannot say I am super excited about a diagnosis of Lyme. Eriksgirl is more optimistic that I can be cured, and be done with all of this. I was content with the Multiple Sclerosis, and the routine that I had gotten into; both with the treatments and understanding the disease. Now I am thrown into something that I do not understand all that well. Furthermore, I am having a difficult time finding a doctor that is skilled in treating Lyme, especially now that I have long entered chronic/3rd stage Lyme (and all those doses of Solu-medrol only made things worse). On the positive side I am doing really well (especially considering the MS treatments would have been making the Lyme much worse); so I am hopeful that if not cured than I can be almost cured. Treatment will probably involve high-dose IV antibiotics for probably ~4 months. After that I will probably be on lower-dose oral antibiotics for many more months. All that is left is that I need a doctor that knows Lyme (LLMD – Lyme Literate MD), preferably in Dallas, and can begin the treatment I need.

Mar 172007

3/20/2007 Edit: Decided that there was no value in listing the doctor’s name so edited the post to just using a pronoun for the name

Extremely disappointed!!! I did not expect him, or any doctor in Texas, to be an expert in Lyme, since it is a rare disease here. What I do expect is that as a doctor you either do your homework on a given disease (Lyme), or you refer me to someone who is familiar with the disease. I can even accept that you would have to follow-up with me after consulting with some reference materials and other specialists. Possibly, he may be an acceptable doctor with diseases he is familiar with; just not with diseases he doesn’t. What I really object to is his radical unpreparedness and blissful ignorance for my case. Overall, I was left with the impression (based on a general attitude) that he is not enthusiastic about his work, and thus does little reading of journals, etc. to stay at the forefront of his specialty (I would think that my case could add a little spice to an otherwise same old routine). Some tidbits from Friday’s visit:

  1. 30 minutes late for the appointment (trying to ignore his previous indiscretion, and then again.) He was late because he was reviewing my chart (I was the only appointment today), and he arrived minutes after I did. I would expect an infectious disease doctor to review his upcoming schedule so he can prepare for any diseases that he might not be that familiar with, and so he doesn’t look like an idiot when talking about the disease. He obviously did not want to proceed down that route, and would prefer to look like an idiot. He has had my lab work and back pictures (Bartonella Rash) for two days, and my suspected diagnosis (Lyme) for a month. Let’s wait until the appointment to quickly read over the chart, and any old textbooks I have laying around.
  2. In his first few sentences he made it clear that he had no idea about the C6 Peptide test, and the test’s significance. He said there are lots of “Mom and Pop labs” that do some weird tests. Of course this is not a weird test, and has been suggested as being the new “Gold Standard” for Lyme (although with criticism). Eriksgirl tries to explain the test with little success. He said he needs to call the labs director so that he can figure out what the test revels (like maybe it’s a positive test for Lyme disease!). Of course this should have been something he did before visiting with me, see #1.
  3. The CD-57 test was also mentioned, and he said that has nothing to do with Lyme. Eriksgirl did not go into a description of why this level is important in assessing efficacy of treatment. Again see #1.
  4. After discussing my symptoms, and that I am self-admitted in a light period at the moment, he thought there was basically no reason to think that I have Lyme and to question the diagnosis of Multiple Sclerosis. This was even after reading aloud the referral letter from my neurologist saying that there was “compelling” evidence for a potential Lyme infection, but an infectious disease specialist would have to make that determination. How we could see the exact same text two different ways is a mystery to me. He went on to say that a neurologist should be able to diagnose lyme disease based on the neurological symptoms (I guess so much for Lyme being the great imitator).
  5. He went on to ask what I wanted to achieve by being treated for Lyme (e.g. take high dose antibiotics). Apparently the wrong answer was to not have Lyme. He said that treatment of Lyme is a clinical one (and to some degree I do agree, but with the CD-57 it is less so; secondarily I would think you would rely on diminishing Herxheimer reactions), and without anything to treat there are no objectives. No clinical objectives = no reason to treat with antibiotics. He thought it was better to treat the Multiple Sclerosis rather than worrying about Lyme.
  6. He went on to offer a 3 week treatment of IV antibiotics to set my mind at ease. Eriksgirl noted later that apparently I am a hypochondriac, and he will treat my neurosis with 3 weeks of antibiotics to make it all better. I declined. (3 weeks of antibiotics would be insufficient for chronic Lyme anyways, which furthers my assessment that he doesn’t have a clue about treating Lyme). Secondly, who “hands out” high-dose anything if you don’t think the patient needs it?
  7. Eriksgirl mentioned that we will be going to see a Lyme specialist in PA for a second opinion (can he be considered a first opinion?). He noted that he thought it was a “waste of money.” I understand his hubris because he is an such an expert in Lyme, knows what all the tests mean, and the proper treatment methodology for chronic Lyme so there is no need for a second opinion from a Lyme specialist (especially no need to see the doctor who recommended the lab and all the tests that got run by that lab).
  8. I also noted that I was referred because of the recurrent rash that occasionally appears when when I am having problems (but definitely not always). He said that Lyme does not have a rash that appears with exacerbations; of course that was after I told him that it was (most likely) a Bartonella rash. He dismissed the rash as being Bartonella; noting that Bartonella does not have a rash (or so he seemed to indicate), and if I had Bartonella that I would have gotten over it by now. He also noted the Bartonella is not a tick borne disease; but instead is the disease of cat scratch fever. In the end he never suggested any cause for the rash simply leaving it that it was not a Lyme induced rash.
  9. He also noted that Lyme would not cause abnormal MRI’s (e.g. lesions). The insinuation was that abnormal MRI’s would be one more indication that I have Multiple Sclerosis, and not Lyme. This was despite the fact that my neurologist referred me to him for this assessment (and the neuro personally mentioned that if I have Lyme I could be cured; meaning I was misdiagnosed).
  10. He also noted that the treatment would be with Penicillin. That sounds like a fine choice, but from what I understand I will need to be treated with two antibiotics because an antibiotic that has good tissue penetration does not typically have good blood-brain barrier penetration and vice-versa (The International Lyme and Associated Diseases Society, p.6, Section 10); something I would expect and ID doctor to know. Then there will probably be yet a 3rd antibiotic to treat the Bartonella.

Endnote: Going in, I did not have high expectations that he would be able to help with the Lyme because of the rarity of the disease in Texas. It was a long shot, and it was worth a try. I was simply put off by his gross ignorance, apparent lack of interest in my case, and unwillingness to learn more about the disease. Overall this experience was for the best because I have been working on a list of questions to ask the doctor (which I did not have for the original meeting, so bizarrely it worked out for the best that he canceled) so I will be better prepared for future visits.

Feb 262007

I received a call from the doctor’s office on Monday, and the Lyme Western Blot came back negative. I did not find that surprising, but wanted to confirm the results of the test myself. I had a count of 46 for the CD-57 test (which LabCorp bracketed that it was out of range; 60-360 is in-range); which seems to definitely confirm my suspicion of Lyme (but upon Eriksgirls talking with the Tick Borne Disease Center CD-57 is not a test that can diagnose Lyme). Regardless, the CD-57 gave me quite a bit of hope that this really is Lyme, and we just need the rest of the tests to agree. As already said, the Western Blot came back negative, but LabCorp did not include the details of which bands were reactive. Eriksgirl called and asked them to send the full report to the doctor so we can see if it really was indicative of Lyme, but I have not called to get those results. I suppose it is a long shot that the LabCorp Western Blot results will help, but we shall see.

Also, from Eriksgirl’s conversation with Tick Borne Disease Center He went on to recommend the following tests from Medical Diagnostic Laboratories:

  • Elisa and Western Blot
  • C6 Peptide
  • PCR (DNA) of the following:
    • Lyme
    • Ehrlicia
    • Bartonella
    • Babesia
    • Mycoplasma


He also added that tests for Lyme suck, but that I would need a positive test before I could be treated for Lyme. On a plus this lab he recommended is covered by insurance, and from their paperwork seem to be fairly familiar with Lyme.

Since I have taken so long to post this I have received the vials (2 yellow tops, and 1 tiger top) to send to MDLab. I also have an appointment with the doctor tomorrow to talk him into drawing the blood to send to the lab.

For the curious here are the recent lab results.

Feb 152007

My ongoing investigation to see if I was misdiagnosed with Multiple Sclerosis.

Friday, February 9, 2007
I went to the neurologist last Friday to talk to him about the possibility of Bartonella and Lyme. I showed him my prior Lyme test results (the much less accurate ELISA test instead of the Western Blot) as well as the pictures of my back compared to these Bartonella rash pictures. After looking at the pictures he agreed that they looked alike, but did not remember Lyme looking like that (which it would not be Lyme rash). He referred me to an infectious disease doctor to better investigate the possibility of Lyme/Bartonella. Overall, I was disappointed because I wanted him to run the Western Blot and the CD-57 tests. Doubly disappointed because it will be about a month to get into the infectious disease doctor.

Wednesday, February 14, 2007
Being an ever impatient American, waiting a month seems pretty unacceptable (no regard to the fact that if it is Lyme I have had it for ~7 years – more on that another day) so onto the family practice doctor we use. Of course I suspected that this would be pretty much the same outcome as the neuro visit since no one gets Lyme disease in Texas, and thus has no one has any knowledge/experience with the disease (CDC Lyme Map). Quite to my surprise, on showing him the pictures of my back and suggesting Bartonella he agreed that is exactly what it looks like (and before I showed him the comparison pictures). I also explained that I have had an ELISA Lyme test which had come back negative, but I would like the more accurate Western Blot and CD-57 tests done. He was definitely familiar with the Western Blot (and seemed to at least have heard of the CD-57 test), and agreed both should be run. The longest wait was for the LabCorp techs figuring out what to draw since their on-site manual did not cover the CD-57 (and had never drawn for either type of test). Hopefully I can have the results back in a couple of weeks.


May 292006

MS Red Mark on BackFor a while I have noticed that around the time I have an exacerbation I develop a red mark (rash) along the middle of my back along my spine (mid thoracic). I don’t have pictures from most of these occurrences, and can just barely see it in the mirror, but I think it happens in an almost an identical place, and is an almost identical size and shape. The rash does not hurt, is not warm, and I do not notice it in any way (Eriksgirl lets me know). On some occurrences it gets very dark, almost purple, while other times it is very faint. Yesterday, Eriksgirl noted that it is returning – although it is very light. I guess not a huge surprise since I have had a couple relapses. I guess the questions becomes, is it the Multiple Sclerosis, or is it something else?!

This is an old crummy picture, but it the typical mark on my back. The ruler is in inches – so the mark is about 5 inches (12.7cm) long.

4/10/2012 Update:  Probably a long overdue update to this post.  The comment below was correct about this being a Bartonella rash.  I took that to mean that I had Lyme and proceeded to get testing and treatment for both.  While I am not all better, I still have “silent” lesions on the brain, I am doing much better than I was before.  For now, and for a while now, I have not been doing any treatments.  The argument could be made I quit the Lyme treatments too early.  If you have a similar mark I urge you to not ignore it, and if you have it most likely you also have Lyme.  Good luck!