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.

  6 Responses to “Finally, Lyme Doctor Phone Consult”

  1. You are aware that all of these symptoms are known adverse drug reactions to the class of antibiotics known as the fluoroquinolones, drugs such as Cipro, Levaquin, Avelox, Tequin, etc?

    Balance Problems
    Burning
    Depression
    Diziness & Vertigo
    Fatigue (acute)
    Itching
    Leg Weakness
    Loss of Hearing
    Motor Control
    Numbness
    Pain
    Tremors
    Vomiting

    And that such reactions continue long after you have stopped taking the drugs and result in lifelong disabilities? Seizures are also a known adverse reaction to levaquin and people who have a history of seizure activity are NOT to take levaquin?

    Anyhow you might want to log unto http://www.fqresearch.org and review the 4000 medical journals, case reports, etc., that detail the horrendous safety profile of these drugs, as well as the non-abating nature of such reactions. I have to wonder if you may have suffered an adverse drug reaction years ago rather than M.S. as a lot of lyme patients undergo long term antibiotic treatment with the fluoroquinolones with diasterous results.

    Might be worth checking into at any rate.

    Let’s hope I’m wrong for you stand a better chance of getting treatment for the M.S. than you do these reactions.

    Regards,

    Mr. David T. Fuller
    Director
    Fluoroquinolone Toxicity Research Foundation

  2. David,
    While I have basically had all of the symptoms you listed that was years before taking Levaquin/fluoroquinolones. If I have chronic problems it would be more reasonable to blame the Lyme, and the problems I have had before the Lavaquin, than to blame the drug. Certainly I do keep a close eye on it for possible problems, especially tendon issues.

    I also realize that Fluoroquinolones lower your seizure threshold, which combined with suddenly stopping the Ambien CR certainly pushed me over the edge. My neurologist cleared continuing to take the Levaquin, for now, despite its seizure impact because of the difficulty of treating Lyme.

    I’ll be honest that the fluoroquinolone class makes me nervous; and your post reminds me how nervous they make me. Unfortunately, I am between a rock and a hard place and it is uncertain how to best proceed.

    Thank you for your comment,
    Erik

  3. Hmmm … “absence seizures” … sounds like I have those every night at the dinner table when the Mrs has to poke me to get my attention.

    Or, I’m just very focused.

  4. mdmhvonpa,
    Yeah, the wife filter. I’m surprised that hasn’t gotten me killed yet – if only I had absence seizures to blame it on. 😉

  5. the “petit mal” seizure sounds familiar to me. i have these “out of it” moments alot. but it might just be really bad fatigue. who knows. but i do get the twitching in the eye or different parts of my arm or body sometimes. and i blank out sometimes. who knows. and yes i do have bartonella. but i think i’m getting better. crossing my fingers!

  6. Courtney,
    I think everyone has muscle twitches periodically; so I think that is “normal.” I don’t know what you mean by “blank out,” but that could be bad. Regardless, good luck with your treatment!

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