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Re: post viral syndromes katekite

Posted by ben on May 7, 2002, at 4:15:51

In reply to post viral syndromes, posted by katekite on May 6, 2002, at 16:32:00

> Hi Ben,
> I'm a veterinarian...I think we health professionals know just enough to drive ourselves completely nuts thinking that we can, by force of will and education, figure out what we need. I have gone through times when I just decided to let it go and let my psychiatrist deal with things, and then later it becomes 'painfully' apparent that was the wrong thing to do. I am but one of hundreds of patients to them, and they are driven by insurance etc to spend around 10 minutes actually seeing me. Plus I present in a depressed anxious mood and that's as far as they can see. It hasn't been til now, til I finally decided to go while not depressed, that my primary problems are being worked on. It is amazing to me the degree to which medical problems are overlooked when pyschiatric ones are present.
> These weird syndrome issues are sort of analagous to the time I had viral meningitis and went a total of 11 times over a few weeks to a total of 4 different doctors at my college health center, to be given a different prescription every single time, for migraines, allergies, etc, until one day I finally fainted and got taken to an actual hospital where they did a million tests and figured it out. After that, I got a post spinal tap headache, went back to the health center and a fifth doctor told me I had a migraine despite me asserting the post csf tap idea -- eventually passed out with less than good cerebral pressure, back to the hospital, rational diagnosis, etc. (never let med students do your spinal tap).

What is CSF ? I never had headaches during the flu !

> Think of your fellow class of pharmacy students and think of the few you would feel comfortable asking for advice on something serious. That is the same percentage of specialists/doctors/etc who will be truly helpful. Just like our classmates, its hard to tell who actually will take your problems home with them to ponder, and you can't believe them saying "I'll have to think about this".

Thats right, who does it really care ?

> So then, in this territory of difficult syndromes we are in, the 'foreign country rule' applies. This rule is as follows: if you are lost in a foreign country, ask direction of three separate people and average the replies.
> To answer your questions, I had a diagnosis of BP II, although I had never had a hypomanic or manic episode. Before that it was general anxiety and before that major depression. I am currently diagnosed as having attention deficit disorder without hyperactivity. Ritalin makes me calm and even, no more moodiness, so that's truly the first diagnosis that feels right since the major depressive episode. And finally my husband agrees psychiatric medicine is a good thing.

I never had mania but 2.5 years ago when the depression came I was perhaps a little bit hypomanic (anger, doing things I never did before). I got depressed and was having the MONO (EBV) in this time.

> The klonopin was prescribed for anxiety, the neurontin as a mood stabilizer (though it actually was disinhibiting and made my moods look worse) and neurontin's beneficial effect for me was a great decrease in anxiety. It was after I raised the dose of neurontin from 200 mg TID to 300 mg TID that I started having problems.
> In general I feel that neurontin is a great drug -- I am also extremely sensitive to drugs (needed only 5 mg/day of Paxil to see a mood effect). Many people get used to the sleepiness... I actually never felt sleepy until 900, at lower doses I actually found it activating, probably through the reduction of anxiety somehow. So don't let my side effects dissuade you from a trial.

People with ADD react often paradox to drugs !
> The reason I say that maybe neurontin/klonopin interaction sensitized me to this is only that I found I got many infections while on it. Lots of cold sores. Seemed like my overall immunity suffered. Weird because I felt good and usually if I feel good its because I am, LOL. So I mean only sensitized, for me, in terms of a lowered resistance to any infection. (Although I will always wonder if it pruned some neurons somewhere in my hypothalamus.)
> More questions for you:
> So the neurologist observed a peripheral sensory neuropathy? Can you expand on what they suggested you do next? Are you saying they found conduction abnormal but can not say why? or that they were not sure? or? I feel I'm missing a puzzle piece here.

They found an absent sensory response of the peripheral nerves, but dont know what it means and if this is causing my symptoms !
They will redo the EMG/NCS in the hospital and perhaps a lumbal punction (spine liquid)
to look about infections etc.
I had often fasciculations in the muscles (fast repeated twiches) of legs during this 2 years and some docs are very interested in this (others dont care about it).

> I'm sure the length of treatment with metronidazole to develop neuropathy is a statistical length of treatment.... why shouldn't you be at the short end of that? Is the exact damage that metronidazole is known to cause something you may have? or is it more like something similar? is this a reach or a possibility?

It is causing polyneuropathy sometimes but this should be reversible after coming off metronidazol. Perhaps the metronidazol was much more higher during Paxil treatment (enzyme interaction ?! hadnt found of any literature about that)

> As far as paxil: I'm not sure I undestand, are you really saying paxil is the one drug that helps the pain? So you have tried it since, then? With what exact effect? how long does it help for? How high of a dose of paxil can you tolerate and what are the side effects?

According my pdoc Paxil is the most probable SSRI in pain treatment (Prozac, Celexa and others do not affect pain). As I said a was on 30 mg/s of Paxil and had to come of it: weight gain, bruxism, awfull fatigue, restless legs and strong increased liver enzymes (likely from paxil ?! because it has gone away when I reduced it). It helped me for depression ! I didnt try it since because Is witched to a MAOI (Moclobemide = Manerix) after Paxil and these two drugs together would be dangerous ! I asked my pdoc to do a second trial with Paxil but he (and myself) arent very optimistic about the side effects. And if it comes to stop or switch Paxil is very bad to go off or combo treatment (strong CYP 2D6 inhibitor !). He suggested Effexor or Desyrel or Gamonil = Lofepramine. I am afraid that Desyrel would knock me out and Effexor leading to sweating and headaches (tried it up to 150 mg/d about 1,5 years ago and had to come off this reason!). Lofepramine acts like Desipramine on the noradrenaline system (tried Edronax = Reboxetine with a good initial response but pooped out and too much side effects !

> Because if paxil is the one drug that helps, it seems almost bizarre that it was the one drug you happened to have in your system (a small concentration to be sure) at the time you got the flu-symptoms and pain. I'm not saying it sounds like withdrawal. Puzzle piece though.
> "Something hidden in the brain." Would that be bad? Only if it stayed hidden. The two possibilities you are looking at are something in the peripheral nervous system or something central, unless its neuromuscular junction which doesn't seem logical. I can't think either is better than the other.

Okay, but to get rid of the pain there is more chance if you know the reason !?

> Yes second opinion yes. Idiopathic just means not enough people have had it for it to be understood and identified and written up. A smart doctor could most likely find something that helped it feel better, controlled it, at least, if it can't be cured.

That would be great to find such a doc !

> Depression: with suicidal ideation that's got to be the first priority. Of course it may feel less painful if the depression lifts, because when we are depressed we naturally focus on negative things. What drugs have you tried for the depression since the pain started? I will look back at your other post as well, I'm curious.

Since january: Manerix up to 450 mg/d (Moclobemide a MAOI). Dose reduction of Manerix cause of nervousness anxiety to 225 mg/d. 3/02: Addition of Elavil (up to 20 mg/d).
4/02 Washing out of the Elavil and addition of the TCA Opipramol (Ensidon, Insidon) up to 200 mg/d. Now I only take the 200 mg/d Opipramol and 0.5 mg Lorazepam at night.
Tried without real benefits NSAIDs (Ibuprofen, Diclofenac, Piroxicam, Proxen), Paracetamol and Tramadol (only a few benefits !)

> As to the percentages of people who don't test positive but are, very true. I have to guess you had a virus that altered some brain or peripheral nervous system function to the point it hurts. There's probably no reason not to try a few antiviral therapies: amantadine, acyclovir etc. As well as novel anti-pain therapy: neurontin, etc. I would guess you would better spend money on trying meds than finding the virus that did it. Unless the pain is getting worse it may well be gone from anyone's view.

The docs never thought about that and I think antiviralias are bad to tolerate and can affect the nerves too (they act cell based !).

> I know this is a really long email and I'm also hoping I haven't taken away any hope for a cure, I didn't mean to.
> Remember to take my ideas with a grain of salt, given I'm biased by my own nasty experiences with doctors who couldn't diagnose a hangnail let alone a real problem, plus bad experiences with some meds (including paxil).

What does it mean (sorry, my mother language isnt english):a hangnail let alone ?

> Am really curious about whether paxil really helps your pain as I'm inferring.

Why do you inferre Paxil helps with my pain ? I am confused: Okay it could help (but I am off and the pain started when weaned off Paxil very slowly !). Interstingly I never had coughs or flus on ADs since all started but now I seem to attract it.





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