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On Life, Liberty and the Pursuit of Hot Chicks

Discussion in 'General ME/CFS Discussion' started by nanonug, Apr 2, 2013.

  1. nanonug

    nanonug Senior Member

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    Well... Not really! At least not the part about life and liberty.

    Some of you might have noticed that I went abruptly silent a few months ago. It wasn't because I died and it certainly wasn't because I caught crabs, which, as far as I know, I didn't. I simply needed some "me" time. That happens to brats like me, i.e., those who were raised without the benefit of siblings.

    Much has happened and I believe I finally know what is the root cause of my lifelong misery.

    I left Phoenix Rising at just about the time I was getting ready to be tested for Mast Cell Activation Syndrome. I found a wonderful Immunologist in Chantilly, Virginia, who was willing to follow Dr. Afrin's protocol. In particular, tests were ordered for serum tryptase, 24-hour urinary N-methyl-histamine and 24-hour urinary Prostaglandin D2. These tests were performed by Quest Diagnostics. The test results came back normal and instead of further pursuing the MCAS route, I decided to focus on a different thing as I felt that MCAS was an unlikely diagnostic. What both urinary tests showed me, however, was that I was peeing more than the container maximum of 3 liters.

    I decided to focus my attention on the subject of diabetes insipidus. I found out that Labcorp was offering a very convenient blood test that measures both plasma vasopressin and plasma osmolality at the same time. Although this test required special preparation, at the time I decided to just get a preliminary picture of what was I going on. When I got the results back, one interesting fact became immediately apparent: although plasma osmolality was slightly elevated, there was absolutely no detectable vasopressin (it was below the lab's detection limit.) I then scheduled an appointment with an endocrinologist.

    A few months earlier, the last Metametrix GI Effects test indicated some H. pylori in my digestive system so I convinced my GI doctor to prescribe me the common triple therapy consisting of omeprazole, amoxicillin and clarithromycin. I started taking that stuff and for the first four days didn't get any reaction. On the fifth day, however, and upon waking up, I felt more... alive! Not only that but I started working like a horse on steroids, something I hadn't been able to do for a long time. Because this experience with amoxicillin and clarithromycin had produced the same result a few years back, I concluded that coincidence it was not, that the antibiotics were indeed taking care of "something". Was it the H. pylori? I knew that H. pylori had been recently associated with certain neurological diseases, including Alzheimer's and Parkinson's. But I wasn't ready to jump to conclusions. Given the effects of the antibiotics, which for the second time had given me my life back, I scheduled an appointment with one certain infectious disease specialist.

    The doctor, a specialist in infectious diseases, thought I might have Lyme disease. The appropriate tests were ordered but everything came back negative. Lyme disease it was not. The idiot cited "cost control" to stop testing at this point. I simply scheduled an appointment with a different infectious disease specialist.

    Meanwhile, while waiting for the appointment with the endocrinologist, I found out via Wikipedia that nicotine has the power to stimulate the secretion of vasopression so I decided to give the nicotine patch a try. That was a great decision because it gave me an incredibly amount of energy. Shortly thereafter, I spoke to my psychiatrist about my little nicotine experiment and he gave a prescription for Adderall XR, thinking that I was simply taking advantage of the stimulating properties of nicotine. However, the Adderall XR made me feel like crap while the nicotine patch made me feel quite good. The nicotine was clearly doing something above and beyond the stimulating thing.

    Fast forward a few weeks, my appointment with the endocrinologist was most interesting. The doctor, an Iraqi female unafraid to speak her mind, gave me a hard time due to my choice of not doing the required preparation for the osmolality test. I had no choice but to agree with her but pointed out that I was still supposed to have vasopressin for the measured osmolality. She was still not convinced, and suggested that the problem might be primary polydipsia instead. In any case, she ordered some additional blood tests which I did right there as by now I had been some 6 hours without eating or drinking anything. A follow up was scheduled and I am going to see her in the next couple of days. Just in case you are wondering, I did enjoy the vigorous exchange with the doctor. After all, it is not every day that you find a doctor that is willing to listen and challenge you at the same time. I confess to having what I can only describe as "fun". (Yes, I am weird like that!)

    With egg on face, I decided to redo the same plasma vasopressin/osmolality test but this time with the appropriate preparation, i.e., a 12-hour fast including all fluids. For good measure, I also threw in urinary osmolality (first void) and CBC tests to get a more complete picture of my sorry state. The results that I got back confirmed the central diabetes insipidus hypothesis.

    I finally saw the second infectious disease specialist and upon hearing my story, he was convinced my symptoms could all be explained by a case of chronic sinusitis gone bad. He put me on Augmentin (an amoxicillin and clavulanate combo) for 30 days. By day 15 things were as good as before which by now weren't really all that jolly. I am now just finishing the 30-day course without any effect and it is only logical to conclude that whatever effect I got was due to the clarithromycin.

    The trees in my neighborhood started having sex. My misery started to increase in proportion to the amount of pollen in the air. I knew that it wouldn't take long for those terrible headaches to return. And return they did! Tried Claritin (loratadine) and got no effect. Switched to Allegra (fexofenadine) and the same non-effect I got. Finally, decided to try the zombiefying Benadryl and in a couple of hours my headaches were almost gone. Not only that, but I only took half the normal dosage. Now, the difference between Benadryl and the other non-drowsy antihistamines is that the latter don't cross the blood-brain barrier. This suggested to me that the screw up had to be in the central nervous system or thereabouts. Eventually I switched to Zyrtec (cetirizine) which still leaves me a little bit drowsy but not as much as Benadryl.

    Started researching bugs susceptible to clarithromycin that not only inhabit the central nervous system but are also difficult to eradicate. I eventually focused on toxoplasma gondii. Ordered the relevant serological test and happily went to Labcorp. A couple of days later got an email telling me the results were available. Downloaded the PDF file with the result to my trusted Google Galaxy Nexus and anxiously waited for Android to open the document. Well, you guessed it, the result was positive, with absolute IgG more than four times the lab threshold! There was no doubt in my mind that I was infected with toxoplasma gondii.

    I got the positive toxoplasmosis result just a week ago. But much learning I did since then. It appears that Toxoplasma gondii induces the astrocytes (in the brain) to produce an inordinate amount of a tryptophan metabolite known as kynurenic acid (KYNA). This KYNA acts as a negative allosteric modulator on the alpha7 nicotinic acetylcholine receptor. What this means is that this receptor becomes less, well, receptive to acetylcholine. But, so what? This receptor controls the release of glutamate into the synaptic space of glutamatergic neurons. But, again, so what? Well, glutamate is the main excitatory neurotransmitter in the brain. Without it, things start to slow to a crawl, resulting in a "sleepy" brain. On top of that, it seems that this same mechanism is at play in the hypothalamic-pituitary osmotic sensing and releasing of vasopressin. It also provides an explanation for why nicotine helped me - I was simply overwhelming the aforementioned alpha7 nicotinic acetylcholine receptor and inducing some level of glutamate release.

    In the pipeline for the next few days I have two appointments, one with the endocrinologist and another with the infectious disease specialist. Meanwhile, I learned that galantamine, a drug and dietary supplement used in the treatment of Alzheimer's patients, also acts as a positive allosteric modulator of that mysterious alpha7 receptor. I am waiting for my online order to arrive.

    (To be continued...)
     
    Sidereal, Beyond, maryb and 13 others like this.
  2. ukxmrv

    ukxmrv Senior Member

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    I guess it's a case of chasing up known CFS problems like the diabetes inspidius (which my doctor was finding in his patients in 1999) rather than the whole mast cell thing? Also the known and common bugs that are killed by the AB's.

    Nicotine is an interesting one as other CFS patients over the years have reported being better when they smoked or on the patches.

    Hope you continue to find improvements.
     
    nanonug likes this.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    So it is cheaper to keep you ill than to treat you. I think you should add this to the thread of stories about doctors that will be passed on to the White House.
     
  4. Starfive

    Starfive

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    welcome back ...and I look forward for the next installment. I too had h pylori and felt better on one of the three abx, I think the same one as you. The feeling good did not last long at all. Nowadays, on occasion I take some Nuvigil to wake up and feel something like normal in the energy department. May be coincidence but I quit smoking using Chantix in September about 6-7 years ago and got sick with cfs the following summer.
     
    nanonug likes this.
  5. adreno

    adreno 3% neanderthal

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    Interesting nano, and welcome back :)

    I also have my eye on parasites ATM. So the TG protozoa would not show on a Metametrix GI Effects profile? I got the "parasite present, taxonomy unknown" result, which indicates an unknown protozoa.
     
  6. Shell

    Shell Senior Member

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    That's quite a detective story. Fascinating stuff. I really hope all this leads you to good or even just good enough health.
     
    nanonug likes this.
  7. snowathlete

    snowathlete

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    Thoroughly enjoyed that read nanonug. Your making progress which is great and I like your approach. I just tested neg for toxoplasmosis but positive for Parvo.
     
    nanonug likes this.
  8. nanonug

    nanonug Senior Member

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    Metametrix doesn't indicate they specifically look for this parasite so I would be inclined to say "no, it won't show." You could always resort to serological testing, which is what I did.

    PS. You continue to look very handsome on that profile photo of yours! :)
     
    adreno likes this.
  9. Xandoff

    Xandoff Michael

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    Nanonug,

    My illness started with a an ulcer from Viox. The Vioxx was prescribed because of inflammation in my neck. The Pain of my ME is unbearable. I have spinal stenosis and other issues DDD etc. Thanks for the post Nanonug, you might want to check out my post on the Blog page in which Dr. Kenny De MeirLeir from Belgium describes ME and Pain. I am taking GcMAF which is helping, but not with pain. What kind of pain do you experience? (if any)
    All my best nanonug with your research.
     
  10. nanonug

    nanonug Senior Member

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    Although I have assorted discomfort through out my body, most pain I experience comes in the form of headaches. In my case, the only stuff that helps are first-generation anti-histamines (those damn mast cells, again! :) ), those able to cross the blood brain barrier. I usually take Benadryl (diphenhydramine). Zyrtec (cetirizine), despite being a second-generation anti-histamine, also helps as it somewhat crosses the blood-brain barrier.
     
  11. adreno

    adreno 3% neanderthal

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    I guess I was mostly asking whether it would show on a stool test (whether the unknown parasite on the test could be it). I would have to look into finding a test somewhere in europe. It's not easy with blood samples. I would also need somewhere to get the blood drawn.

    I believe I am only surpassed by you in terms of looks ;)
     
    nanonug likes this.
  12. Xandoff

    Xandoff Michael

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    I used to take daily Vitamin b-12 shots but they became cost prohibitive. I now take B-12 50000mcg sub-linguals because they do cross the blood brain barrier. I will have to give Benadryl another try. Thank you again for sharing. Low Dose Naltraxone helps me/ 4.5 mg before bed.
     
    SickOfSickness likes this.
  13. jeffrez

    jeffrez Senior Member

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    Absolutely fascinating, nanonug (but where are the hot chicks? Lol, j/k)

    I'm interested in your story because a little over a year ago I had a bad sinus infection which was mostly cleared out with clarithromycin. Doxy, Zithro, and Mupirocin via nebulizer were all little more than useless. But I also experienced some apparently sinus related cognitive/attention, etc. deficits as a result also, kind of like what you described as a "sleepy brain," which improved a lot after the first course of clarithro, but the remainder so far still persisting along with some kind of rhinitis, despite MRI being totally clear. I was wondering myself if I might be harboring some lingering CNS organism, but not sure how to test for that. Thought maybe lumbar puncture would be necessary. Would be interested in learning more about how I might test for that, if you could let me know, either here or PM would be great.

    A few years ago I had an extremely positive cognitive, mood, and WBC immune boost (from ~2 for years to over 5 literally overnight), from drinking a broth I made containing substances that positively modulate nicotinic acetylcholinergic function. Modulating those receptors apparently can have an effect on neutrophil proliferation, so you might want to look at that, too, to see if anything changed. For me it was like an "on/off" switch, in that the receptors must have gotten downregulated somehow, but then after I took the agonist, they got flipped on again and stayed relatively stable.

    After that happened, I tried nicotine gum to see if I could get more benefits, but instead it had the opposite effect and disrupted attention again. Could never figure that out, as nicotine, as you say, can be such a positive pro-cognitive drug, but thought there might either be some glutamatergic dysregulation from stimming the alpha7s too much, or possibly some dopaminergic effect. Still a mystery, and I've been afraid to try nicotine again, but I would REALLY like to figure that out.

    I mentioned toxoplasmosis to my ex-GP at one point, thinking maybe I got something from my cat, but he refused to test for it. All the other mainstream docs I've talked to have just dismissed the possibility of any CNS organism by saying I'd have meningitis, high fever, be unable to even be sitting there talking to them, etc. which I think is total bullsh*t. But now I wonder if that in fact is what's going on. It's just a serum test for TP, then if it's positive, you know you're infected, is that right?

    I tried galantamine many years ago, btw, it didn't seem to help much. What I found helped more is Huperzine A, which is also an acetylcholinesterase inhibitor, and I *think* modulates alpha7, but you'd have to check that. It's been a long time since I've taken it, and frankly I just forget if it does or not.

    Good detective work!
     
  14. nanonug

    nanonug Senior Member

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    You mean, you want me to share? If that's the case, you've got to tell me what you bring to the "table", bro! ;)

    It's a simple blood test, looking for antibodies to toxoplasma gondii. I bought mine from PrivateLabsMD and went to Labcorp to have blood drawn. Here's the test: Toxoplasma gondii Antibodies, IgG.

    I also tried nicotine gum with results not so diissimilar from yours. The patch, being more gentle, produces away better results on me.

    Yes, pretty much.

    I got my bottle of galantamine today. I am going to start taking tomorrow morning. I'll post my experience in a few days.

    I also take Huperzine A. To my knowledge, however, it doesn't do anything in terms of potentiating the alpha7 receptor.
     
    jeffrez likes this.
  15. jeffrez

    jeffrez Senior Member

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    Haha! I can barely get to the table half the time, let alone bring anything to it. ;-)

    Definitely going to look into this toxoplasma gondii angle, it makes a lot of sense as an explanation. Super interesting about the gum having the same effects for you, too. I couldn't believe it, because I only chewed it for a minute or two at most. Might try the patch.

    Really glad you posted this thread, thanks. Hope the galantamine works for you! Keep us posted.
     
    nanonug likes this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Some very interesting stuff in your message, but just wondered whether you knew that galantamine will have an opposing effect on cholinergic activity to your sedating antihistamines (the latter of which several people with ME, including me, find helpful). AChE inhibitors (e.g. nerve gas and organophosphate pesticides) are also implicated by some in the causation of ME and/or similar conditions such as Gulf War Syndrome.

    Side effects are scary too - see here:

    http://www.medicines.org.uk/emc/medicine/25994/SPC/Galantamine 4 mg ml Oral Solution/

    I thought you needed to know to look out for potential harms and medicinal conflicts.
     
    nanonug likes this.
  17. nanonug

    nanonug Senior Member

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    In relation to Benadryl, yes. However, Benadryl gets me very depressed, very fast and that is the reason I switched to Zyrtec. Enough of this latter one crosses the blood-brain barrier to help me but without anticholinergic and antidopaminergic side effects.

    Indeed! This is exactly one reason why people with ME/CFS should be tested for Mast Cell Activation Disorders.

    Huperzine A, which is also an acetylcholinesterase inhibitor, doesn't appear to have any negative on me. I am counting on having the same experience with galantamine in this respect. In any case, I am going to start slow which is what one ought to do when messing the brain, anyway.

    Thanks for the heads up!
     
  18. Xandoff

    Xandoff Michael

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    I chew nicotine gum and wonder if it could create or exacerbate a leaky gut syndrome? (sp) Some days it really helps and others not so much.
     
  19. beaverfury

    beaverfury beaverfury

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    That's some great booty you've bought back to camp!

    Pleased to see the monkey face again :thumbsup:
     
    nanonug likes this.
  20. beaverfury

    beaverfury beaverfury

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    I wondered if it didn't make my stomach burn a bit too. But it certainly gets my brain working
     

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