LymeGreenPanda Posted September 28, 2013 Report Share Posted September 28, 2013 I posted this on the Members Introduction page, and Chemar suggested reposting it here... Interesting forum, as you specify Lyme and PANDAS. Per repeated blood work over the last decade I have both from childhood. I'm a 45 year old man, permanently disabled (so they say for 14 years), and have been on a hard-core course for Lyme for the last year. Things are looking up. First, PANDAS: (Pediatric?) Diagosed with PANDAS (along with TLD, chronic encephalitis unknown type, Asperger's, CFIDS, and many merely-descriptive diagnoses - over the course of a year at about age 30). Ask my psychiatrist, he'll tell you I have all of them. Ask another doctor, he'll say he only knows about Lyme. Ask another, I have hormone imbalances, and acknowlege auto-immune problems. Ask many other doctors, they'll say there's nothing wrong with me at all and to go see a psychiatrist - which of course is the first doctor that will tell you I have all of those conditions. Second, Lyme: First tested, and came out positive in 2010. It took until last fall to get a doctor to do anything about it. The "University Doctors" at the same university that did studies that show significant residual effects after Lyme, didn't acknowledge residual effects as being valid until confirmed by the CDC. Ironically that was only about a month after their researchers published findings on mice, a couple years ago. It was suggested elsewhere that I probably have "post-Lyme" and was actually infected when I was a child - which is extremely likely considering where I was living, which also has additional tick-borne infections, only other one I show is that I had (thus IgG not IgM) Ehrlichia Chaffeensis, tested a year apart. So, if I'm so messed up, how is it that I'm writing this (seems to me) lucid message? How was I an honors student in college? Symptomatically, I have a hard time expressing myself here. Severe anxiety and sleep issues, which only after more than a decade was I allowed to switch to diazepam. I had asthma all my life, which suddenly disappeared at the exact same time as a severely dibilitating bout which left me bedridden for months, only later learning that my thyroid blew out (called Hashimoto's) and my hormones (thyroid, androgenic, increased estrogen) went completely out of whack and a lump grew at my left elbow. All that cannot be coincidence, but no doctor seems willing to put them together. Epileptic response to light (flashing, certain patterns, sudden changes) that merely render me useless (called Temporal Lobe Dysrhythmia) for quite some time. Visual disturbances after originally having 20/20 sight. Glasses can reduce eyestrain (especially prescription dark sunglasses) but the adjustment they make is very slight, yet I need reading glasses to follow text on paper, especially high contrast paper (laser printed black text on high quality white paper is impossible to even look at, there have been times where I must read such a document so copy it to low quality (and lower contrast) paper or directly to my LCD computer screen, which I have adjusted to low brightness, with soft colors. High functioning Asperger's? Absolutely. Meet me on the street and I'll seem quite normal, or rude (If you try to get me to engage me because I won't), but polite and cordial conducting regular business. Meet me a second time, I will have no idea we met the first time unless there's context or you have something unusual about you (they call that face-blindness). Those few 'friends' I have are long time acquaintances that accept me as I am, know I'm 100% trustworthy, and am as helpful as I can be. Yet I will not necessarily recognize them either. Show me a famous face from the 1980's or earlier and I'll tell you immediately who they are - not that I understand that. Physically, I've had times where I was truly athletic, others where I've wasted away, and for longer than I can remember easily worn out. Energy comes in bursts, easily forget to eat, sometimes force myself to eat and it comes back up. Blood Work: (I can't possibly list all of the out-of-range results here) Anti-DNase B: at a lab where the reference was a titer of 85:480 in year 2000 240 confirmed two months later 340 confirmed in 2001 554 at the beginning of this month, with reference of 301U/mL Anti-Glomular Basement Membrane (something about determining Chronic Glomularnephritis due to the above) 21.2 titer (barely positive) in 2002 retest by another lab in 2010 "Neg" with no further information (a few months after severe change) Lyme: (too complicated to elaborate here) 2/2010 - "neg" at one lab 5/2010 - Western Blot "Pos" IgM, with "neg" IgG (fine print says could be false positive with EBV - which I have), and positive for Borrelia Burgdorferi Plasmid (no other tests showed positive) 7/2011 - convervative lab: "Neg" near simultaneous tests at two labs: one shows Babesia Microti previous infection, other shows "neg" A doctor decided to treat my results and symptoms as a new infection of Lyme since last October (he's not allowed to treat "post-Lyme" or "chronic Lyme" because they don't exist per CDC, so I've been on a severe course of antibiotics, antimicrobials, anti-whatever for a full year at a cost of $10K so far [covered by insurance] and shockingly, my body is improving significantly. At first I thought this was due to the simultaneous treatment with Testosterone, as mine was marginally low, and I've verified his treatment all along with a highly renouned Urologist. Here's where it gets bizarre: after a few months, my testosterone has increased near 1200 (very high) so I keep lowering my dose slowly to less than half, and my level keeps staying up there. The Urologist says this is impossible. He says it is unprecedented. He concludes the only reasonable explanation is that some systemic disease is resolving. CFIDS (Chronic Fatigue Immune Deficiency Syndrome) HHV4 (commonly called Epstein Bar) tested strongly positive in 2001, 2009, 2010 HHV6 tested off the charts high for IgG in 2001, and 4x reference in 2010, but IgM neg when only test was done in 2001 Symptomatically: thoroughly and completely consistent with this Syndrome, which many will say is not actually a diagnosis, but a description of symptoms; grouping together similar patients. A couple bouts of Fibromyalgia in over a decade, but gladly not long lasting. Tested for just about everything possible, ruling out all the obvious, and ~2001 learned that old records get destroyed, so went back and acquired every result that still existed, and keep every new result, and have them summarized. This prevents retesting the same old things every five years, as happened all my life. After relatively successful time through my 20's, I "crashed" starting in 1998, was put on the first 'band-aid' psychotropics which made things worse, cold-turkey switched to another set (major error and they would know better) which made me bonkers, switched and added and messed with my brain for about a year, then found my present psychiatrist which halted all that, tried several more but conservatively, and finding that they all made things worse, continued with testing and treatment of symptoms and I slowly went through stronger benzodiazepines, ending up stable on diazepam - not to suggest that's any cure, but at least I take absolutely no other psychotropics and do better than when I was on them. Permanent brain damage likely due to the 'bad science' in early 1999. Applied for disability in summer 1999. Have been mostly housebound since, with periods of reasonably good mental and physical health. I realize this is entirely improbable - but it is factual. I'm continuing the Lyme treatment which I guess I'll list (though may be incomplete) which will continue, possibly for a couple more years. Suggestions on protocol changes are welcome, as future stages will include anti-parasytics, maybe anti-malarials, and who knows what else. Thing is: I don't know that Lyme is really what he's treating. It is my suspicion that some systemic infection(s) are being treated, even if they are not even being identified: 1 year on Zithromax, concurrent to the following, some switched, others overlapped depending on how they might interact or affect the liver: Mepron for four months Ceferoxime Axetil Clindamycin (I think I'm forgetting some) concurrent to (not for Lyme) Testosterone injections (now tapering off) anastazole (now tapering off) Armour thyroid (now tapering off) diazepam (went up due to effects of others, may taper off) I have basically seven times a day that I take medication per protocol - makes it hard to leave home. Is this typical? Is it even like anyone else? Is it quackery that I'm allowing myself to be subjected to? (I'm terrible at proof-reading, and don't doubt some words or sentences are a bit out of whack) Lyme Green Panda (with TLD and CFIDS, too) Link to comment Share on other sites More sharing options...
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