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LymeGreenPanda

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  1. Found this old thread shows up on first page of Google search results of a couple key words, so figured it should be updated: Due to a head-on car crash shortly after this thread (100% on other driver) I've had to focus on other things. A couple years of P.T. and continued effort and my injuries are no longer as significant, though still permanent. Digestion went south again, so that was only a short reprieve after surgery, then in November 2015 collapsed and have been on a liquid diet since (milk, milk components, cranberry juice alternately - not much else). Since found I can digest potatoes (long chains of glucose, seems my best tolerated carb by far) egg whites (pure albumin, same protein as in our blood, figure that takes no digestion), butter, and Avocado oil. (must eat fat to feed brain) At least I'm not starving, but skinny. One year of the liquid diet avoiding most foods cleared Klebsiella Pneumonia. Not sure how much that helped, but diarrhea doesn't smell like death any more, and is rarer and not explosive. (though I also don't eat anything that upsets my system, use 'shallow' colonics any time I have a problem, so causation is hard to pinpoint) Figured out I had Bile Acid Diarrhea which can be avoided by colonics any time my colon starts to bubble (those are secondary bile acids building up and getting ready to cause problems, I stop it before it starts). Been focusing on hormonal issues, and T injections have gone up and I keep needing more. Now I'm suffering enough blood problems and complete debility that I qualify for a nurse, and get frequent blood tests and phlebotomy to keep my red blood cells from being excess. Told to stay on dose of T that left me walking with a cane, so figured 'forget that' and cheated my T dose higher and health returned; now I'm relatively active again for a few hours a day. That may just be a Band-Aid, time will tell. By having such high dose testosterone, along with 300mg Armour, I have my pituitary and endocrine system pretty much shut off. Two brain MRI's this year showed underactive pituitary (can be through feedback loop due to having nothing to produce, or problem in first place?) but no abnormalities. Anything else endocrine I can shut off? Valium may indirectly be shutting off my adrenals, or keeping them from producing as much. Anyone know a more direct approach to that end? My immunity is high; I absolutely never get sick from normal stuff though I also take great pains to avoid contamination which could also be the cause. PANDAS - with high anti-DNase B, OCD tendencies, anxiety with panic - I'm completely isolated. Considering even higher dose of benzodiazepines than US doctors prescribe, but have to get a doctor from another country to get that. Any alternatives? Went through a few years of talk therapy which felt like a waste of time. Cannot take SSRI's, Tricyclics, nor any other serotogenic(?) drugs. Serotonin is likely excess in my gut as when last tested. Not keen on a spinal tap. Clonidine helps for a while but loses effectiveness. On it again, and can't tell any difference; maybe better concentration. LYME - massive course of antibiotics, antimicrobials, etc; left my gut imbalanced but not necessarily helped. Haven't put any effort into this subject in a few years. A university hospital has stalled all progress. CFIDS - all markers are there, but I put no effort toward that idea, either. Socially it is better to just say I can't do much in a day and get exhausted because of my endocrine problems and leave it at that. Alliopaths never helped with it, support group was just a complaint circle so quit that long ago. Hashimoto's - As I refuse to lower my dose, my thyroid is simply shut down. No symptoms as far as I know. My thyroid seems completely shut off and I don't have any swings. This message is just informative, not really asking any questions. Just seemed like if Google puts this up front on a common search, I should update it. Your input is most welcome.
  2. That is a reasonal position to take based on the information that I've given. I do have significant anxiety, but (to follow your logic) it took over two weeks from the surgery to get the Pathology report yet my diarrhea began clearing up immediately after the surgery, when I did not yet know the results. The stool change since the surgery has been surprising; well beyond any change in anxiety. Put another way, my anxiety varies, but my stool does not follow the same schedule. I've only been regular for a while after each cleanse with Colyte; prescribed a few times before and since a colonoscopy which failed to diagnose the chronic diarrhea. PS: You mentioned "soft stool", so I must be more precise: Explosive liquid diarrhea every day, requiring staying home until at least noon every day so I don't have an accident, but still stain my shorts; and if an appointment forces me to go somewhere sooner, I fast for a couple days before and until the appointment (or project, such as moving) is over. About a year ago, I even bought a home-colonics system. Contrast that to now: completely formed normal "stool" that my internal muscles are having to adjust to coping with. Perhaps I have a reprieve because of some pattern I've not recognized: maybe the huge amount of lidocaine, maybe the anxiety and pain on the operating table. I don't know. I didn't take a single antibiotic or narcotic removing this rather large growth, as some such drug could cause a temporary change.
  3. Nothing makes sense. I'm sure someone reading this thread without a similar background would think I'm a hypochondriac! I searched the whole 'net for any association between Lyme and lipoma and while I did find some discussion, I found nothing conclusive. Here's an update, not that it makes any sense to me: * I went to see the surgeon as described, and his 'blind' response was to just remove it due to its size and potential recent growth. No testing done. * a few weeks ago I had the surgery. The anesthesiologist was great. I gave him a page describing the previous time I went under, what they used, and that I tolerate pain and gore so not to put me under if at all possible. For once, he read the whole thing! He described some reasonable options, and he could have put me under without Opioids which seem to be what I can't tolerate. He would have used a benzo and proponol (what killed Michael Jackson only because no mechanical breathing was available where he was) which is supposed to be well tolerated and if I quit breathing their machine would have done it for me with no harm to me. I went through it with local only (lidocaine without epinephrin), felt most of it up to the level of being stung by a wasp, and just beared it so I wouldn't be drugged. I was hooked up in case, but he never administered anything though he monitored me closely and I said I can handle it, just keep going. * I'm recovering in a normal manner. I found the surgery completely tolerable. * They showed it to me in a jar after removal and it was not connected to my blood supply. Pathology report came back saying it was a lipoma of over 6x6x2cm; with no problems found. However, they did not culture it or test it in any way for infectious disease. At least a sample is stored 'forever' for future testing. * Besides what I'm about to describe, absolutely nothing has changed in my condition as far as I can tell. Now this is bizarre: * I've had chronic diarrhea for years. Not sure when it started, but possibly late 2009 when my thyroid blew, hormones went out of whack, I started falling (orthostatic hypotension), lost strength, and this lipoma grew rapidly below my elbow (which is near/at a lymph node). I've had all kinds of tests, and no cause has been found. * Since immediately after the surgery, I've become completely regular. In fact, yesterday I ate "all the wrong things" to induce food-intolerant diarrhea... and am still regular! It is now three weeks, and basically my body has to learn to tolerate 'normal' not to get too specific. * To address the most obvious answer: I didn't take even one Narcotic/Opiate. In fact, I haven't taken a pain pill of any sort for so long that the ibuprophen in my cabinet is unopened and expired by a few months! Here's why I'm writing: * How can removing a lipoma fix my digestion? It makes absolutely no sense to me! Perhaps it is just coincidence, as I've been on a serious probiotic regimen for months. Maybe 'trauma of surgery' had a side-effect of halting some process, and it will go back to the way it was in a while. * Maybe now some waste-product is able to build up in my arm again, and is no longer being routed to my digestion? * What tests could they do to that sample that they now have stored, in order to better figure out what is going on with my systemic conditions? * What would determine (particularly prevent) additional lumps to grow in my body? * Okay, let's suppose "Pathology" accurately reported adipose tissue (fat), and called it a lipoma. Might there be something else within that fat? Sorry, I'm only asking here because I already asked my doctors and searched for similar patterns online - and have come up empty. Besides, perhaps someone will benefit from my information on this forum at some point in the future.
  4. I really appreciate the replies! I don't recall the dose, but I was on high dose Valtex for maybe six months ~ year 2000, just before/after Biaxin in a similar course. It really messed with my head, which I don't think was the drug but Herheimer's reaction to the drug killing off something. Modified Paleo without GMO is a goal, but it is extremely difficult to implement living alone. Just taking care of myself and ADL (activities of daily living) is difficult enough. Without the chronic encephalitis (and whichever of my symptoms go with it) I'd be out of this fog, which would be an incredible improvement in my quality of life. I leave to see the surgeon in a few hours. I guess they will test it in some ways - but do I let them biopsy it? I'm worried about it being made of some waste product from Lyme Disease that should not be punctured and allowed to circulate around my body. "gene expression turned on from environmental factors" Interesting, I never thought of that. The similarity is quite strong; one difference being I refuse to take all the drugs and surgeries they did to her. If this lump is something the surgeon is not worried about (not cancer, not fluid waste, etc) then I'm leaving it alone. I don't care about it being there if it isn't a factor in my general health or a risk for deterioration. As to anesthesia, I'll see if they can remove it (suck it out?) without general anesthesia, but will bring the notes from my previous general anesthesia, maybe they can use that as a reference of what not to do.
  5. Thanks for replying, but that's all Greek to me! Actually, Babesia Microti was positive (present) before heavy antibiotics (not the names you described) and negative while on them, and I learn a new set of results on Tuesday from IGeneX tests a couple weeks ago. Ehrlichia Chaffeensis IgG (not IgM) is present, along with Borrelia Burgdorferi Plasmid, HHV4, HHV6, a few others and a partridge in a pear tree! My liver was severely taxed by Metrinidozole, and I took Zithromax, Mepron, and quite a few others. I certainly haven't taken every chemical nor do I want to. Drugs and operations are likely what killed my mother. On that note (if I haven't mentioned it already) I'm following the same pattern as my mother, so the odds that a tick bite is exclusively the reason for my illness seems unlikely to me. I was certainly bitten by ticks as a child in the Ozarks of Missouri and some ticks escaped my notice for as much as a few days. I was never taken to a doctor unless basically ordered to by the school (who could have called "Protective Services" or whatever existed in the 1970s and 1980s). Bullseye rash and serious illness? Probably. Treatment? Not until age 45! What about this lump being related, and the general anesthesia?
  6. I think they do these things Monday. Someone else mentioned a test introducing something into my blood so they can see the bloodflow into or around it. No tests done to date. They may also want to biopsy it. However, some time ago I read that if the lump is "a waste deposit" from Lyme, it should not be punctured (biopsied) but merely removed so it doesn't leak into my body. Alternatively, can they "liposuction" the thing, even if it is a fluid reservoir?
  7. I guess this is as reasonable place as any to ask this... (may as well be in context of my situation) A lot of things are getting out of whack, too much to list here and confuse the issue. Point being that things keep changing. Nothing stays stable. My body is developing antibodies to a bunch of parts of myself! Monday a surgeon is going to look at the lump on my left arm (mentioned early in this thread, larger than a chicken egg), which may be growing again (someone else suggested it is, I'm not sure). This brings up a few questions: 1. What is this thing, assuming it is related to this overall condition and is not a lipoma? 2. The last time I was put under, I nearly died and they had to reverse some drug. They want to put me under. Is there any research related to PANS/Lyme reacting differently to general anesthesia, or any pointers on... how to get through it without damage? 3. Is this thing doing me any harm (like acting as a reservoir for infection, producing chemicals including hormones, or such)? Because if it is not causing me any harm, and will not cause me any harm; it seems best to leave it alone. The university hospital can perform any appropriate tests, but from what I read elsewhere, if it is Lyme related then it is a deposit of some 'waste' and it should not be biopsied (punctured) but either left alone or removed. I wasn't worried about it until I was just asked for an "Advance Directive."
  8. One thing puzzles me, forgive me if it is addresses elsewhere... Many people here have difficulty from a very early age (I was told that I was really late speaking, but made up for lost time (ADHD) when I did). While tick bites were a very real part of my childhood, from as early as age 4 when I first moved to the Ozarks, then Tennessee, then Mississippi Delta, then the Ozarks again; how likely is it that a tick bite is relevant to all these cases of being Lyme positive? In other words, could Babesia, Bartonella, Borrellia, and/or Elrhichia be false positives for something else (from booster shots or some other vector)? Or is it a matter of combining genetic predisposition with booster shots with tick exposure and maybe other factors to make a combination that results in results such as PANDAS, OCD, CFIDS/Fibro, ADHD, Tourettes, etc in some people? Then, is it that people like myself still have the infections acquired as young children which certainly had symptoms as a child but maybe puberty overcame the difficulties, and the auto-immune and other effects popped up decades after the infection is killed off or even benignly present? (Maybe I'm asking questions that science hasn't answered yet) One more confusing thing: my mother was not inclined to go out in the woods, so her chances of getting a tick bite (living in the same places) would have been remote in the extreme. Yet many of the difficulties I'm having, she had. She died before age 60 after slow deterioration from age ~30 - roughly similar to my timeline, and at least part of her physical problems were caused by doctors cutting out organs and giving her a massive, ever-changing drug cocktails (from the 1970's to 90's) that maybe she didn't need if they would have just left her alone in the first place. She had flares of one problem or another that have no cure, and each would resolve mysteriously after a few years - and they gave her all kinds of treatments (many severe) because of her test results. I think her treatments are what killed her. I have tested positive for many things, and refuse treatment... and what do you know? They resolve in a few years without treatment. I mask many problems with diazepam (after seeing my doctor over 12 years) because I react so extremely poorly to psychotropic drugs and seizure medications, actually to most medications. So I don't take any (besides diazepam). HRT (bioidentical hormones replacement) has been my most beneficial treatment, and I hope to get that dialed in better. Yet it seems that some people quit having hormone imbalances after ABx and other (herbal) treatment for infections. This is confusing to me. I don't expect anyone to be able to explain the similarity between me and my late mother. I have no idea if removal of organs (tonsils and adenoids) is wise, given that they cut many organs out of my mother (I expect she had her tonsils removed like so many of her generation, but doubt adenoids were ever mentioned - I hadn't heard of them until last week; when running into Dr Goodman's papers.
  9. iGeneX came out positive, as did a couple Quest tests: Borrelia, Babesia, Elrhichia, anti-DNase B AB strong positive five times 2000-2013, ASO negative, Mycoplasma Pneumonia positive twice (IgG), HHV4 strong positive repeatedly (with CFIDS & Fibro), HHV6 IgG positive, TPO strong positive, hormones out of whack. What does that add up to? I have no idea! My neurological difficulties have always been mild compared to most of the children described who's parents are on this forum. I don't "want to believe" anything; just follow the evidence as best I can. I can't donate $1K for Cunningham's; unless it directly offers a significant change in treatment/protocol. Curious why the assumption that 'myco' came out negative, as Mycoplasma Pneumoniae IgG tested twice as positive - does that mean something useful? I'm now off the antibiotic protocol a couple months after a year which had a sort of strange ending: my Lyme doctor (who has half of his walls plastered with Lyme related information) called me the evening after some test results arrived and my Liver results (AST/ALT) skyrocketed to tell me to stop taking metrinitizole and shortly thereafter took me off all Lyme medications and said he isn't a Lyme doctor but a GP and I need to see a Lyme doctor. What??? Sounds like he got scared of liability. He has me on some 'magic drops' that make his office money, supposedly boost my immune system, "A-L Complex" which has a tiny amount of many beneficial plants. From what I read, this micro-shotgun approach is inconsequential. I'm taking it anyway, so I'm 'compliant.' My hormone levels have been rather strange. Estradiol dropped to the point that I discontinued the inhibitor, and is now at a healthy level. My testosterone stayed high with ever decreasing dose, started to drop so I increased proportionally, then went from 858 (healthy) to 155(way low) yet I wasn't blacking out, and my liver values bounced back up (no alcohol, OTC or illicit drugs). My "Lyme" doctor received the results at the same time, yet hasn't contacted me. I upped my testosterone dose to the full prescribed amount and am feeling better - but haven't even heard from that doctor over a month since the test results. I wouldn't be surprised if the next test result is way off and I have to adjust yet again. Status update: I have no evidence that a one year massive antibiotic/anti-microbial protocol has done me any good, just taxed my liver. Hormone treatment has been perplexing. Gut is only getting better after d/c ABx, still not normal. My Neuro-psychiatrist's office is arranging a 3-way phone consultation with a distant Lyme & Hormone specialist soon; that will allow him to prescribe according to the distant doctor's recommendations. That my Neuro-psychiatrist has to handle everything is perplexing. I may soon have transportation reliable enough to get the the SF Bay Area which likely has specialists (though a hard trip for me, I don't travel well any more), even ones that take Medi-Medi (Medicare A,B,D,extra help; Medi-Cal (CA Medicaid)), such as any University of California hospital. The closest UC hospital isn't helpful at all; there's no such thing as adult PANDAS, no such thing as post/chronic-Lyme, and they are not taking any new endocrinology patients. Found new information that seems controversial; then found it discussed on this forum as well: Dr Jory Goodman claims to have solved PANDAS completely for some adults through T&A (until you read the fine print): http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment then I looked him up: http://www.ratemds.com/doctor-ratings/175790/Dr-Jory+F.-Goodman-Beverly+Hills-CA.html Love him or hate him, most hate him it seems. But I suppose his concept of removing tonsils and adenoids (T&A) may have merit, though the jury is still out, and certainly seems best to go elsewhere for treatment. His observations on HRT are coincident with my own independent conclusions (I split testosterone to 2x/wk and microdose anastrazole daily when I take it). For someone like myself, who has been permanently disabled for almost 15 years, many years after a hard childhood (with well over a decade of high functionality between), after trying so many protocols - surgery is not out of the question. I even accept the possibility of a flare-up of more than six months; if my functionality long term increases so that I don't spend the rest of my life housebound and alone in a subsidized apartment for the disabled (as I do now). However, I'm not going to go through T&A just because I'm desperate. Some reference has been made to people for whom this treatment has made life much worse. I have not found any long term results from adults that have gone through T&A... Can any adults offer their results after at least a year from T&A removal? (even longer would be great) "First thing, I feel you really need to be supplementing with probiotics. We used 75 billion mixed cultures daily with most being given at night, the idea being that they may have time to colonize while you are sleeping. We used FloraSmart, Culturelle and Align." After ABx ended, I've been taking probiotics heavily; Mutaflor (e coli Nissle 1917) helped (but illegal to import, I got one shipment but may not get another), taking Align currently, will try other 'monotherapy' probiotics in rotation rather than mixed cultures (a new idea I'm trying, after reading this: http://www.cortjohnson.org/blog/2013/12/15/ken-lassesen-changing-gut-ecosystem-probiotics/ (and related articles by the same guy - who is not a doctor) Maybe I'm having a hard time with ones that contain Strep - I hadn't considered that. My gut has Alpha & Gamma Strep in high numbers, and zero e coli, doctor prescribed a drug to kill Klebsiella at my request (he wouldn't have bothered otherwise). Gut dysbiosis (tested before ABx, and ten years earlier) is way out of whack. Not sure what it would be if tested right now. I'll put a lot of effort into the probiotics now that ABx don't kill them off daily. Never ended up with Candida, no idea if c. difficile or others took up residence, but I don't come in contact with people, use a foot, clothes, paper towel to open doors when possible or pinky choosing less used surfaces. I avoid hand-shakes and wash my hands a normal amount but particularly after potential exposure to other people's germs. Germophobic? I'd rather consider it prudence! Well, I hope that post makes sense overall, and my questions are clear enough. I have a hard time putting together the overall picture (is that OCD or ADD? I'll sit here and revise it a few hours to be sure, just kidding...sort of).
  10. Wow, information overload... it's hard to know where to begin... Yeah, I am my own doctor. Or rather, I have one that is completely open to tests and (within limits) changes in meds; a second doctor that is treating me as if I am a brand new Lyme patient (wink, wink, nod, nod - he isn't allowed to treat late-stage, chronic, or post-lyme which per the CDC don't exist) and for hormone imbalances, and a third specialist who weighs in on results and suggests changes to my protocol. I've seen many practicing doctors (few that have had enough practice to know what they are doing) over the years, but the first one mentioned was there from near the beginning of disability (maybe 6-8 months after doctors screwed me up worse to begin with). Antimicrobials may last another couple years, and I do take probiotics though they seem a waste since I'm sterilizing my body three times per day - will get serious on probiotics when the anti-bacterial stage ends. I underlined bacterial - because at some point I'll be taking other antimicrobials that will not kill the probiotics (or maybe not as quickly). The asthma was indeed Mycoplasma Pneumoniae, but it's end (though the CFIDS did not go away) was spontaneous concurrent to massive changes in my body, trashing my hormones, raising auto-immune titers (to thyroid, at least), and growing this fatty lump on my left arm, in December 2009. What the heck is this lump? I won't let them biopsy it because of what I heard of it potentially being stored "bad stuff" and puncturing it will just allow it to leak to my system, and their idea of removal is to chop through major veins so I'm loath to have them do it, unless it changes or begins to prevent mobility. It hasn't changed since it grew all at once, and I only know it is there if I look at it. (like someone softened a large chicken egg and stuffed it in my arm, maybe turtle egg would be more apt but I've never seen one for comparison!) Anti-DNase B was first tested around age 30, several times since, and I just had it tested last month at age 45. Varies, but is always really high. Other autoimmune antibodies are present (like anti-TPO AB and others) and it does seem that the Lyme protocol has reduced several seemingly unrelated effects. That I am now having to lower my "exogenous" hormones because my "endogenous" hormones appear to be recovering is unprecedented per the Urologist. G.I. symptoms are too aweful to discuss publicly, but let's just say that I am extremely careful about what I eat. Colonic hydrotherapy was a great stabilizer several times, but now I actually have my own machine, not to be too detailed about it but that I don't have to be as thorough because I can always repeat the process. So I don't clean past my ascending colon, and only rarely need I repeat. Terrible symptoms are now gone. There are few foods that I can really digest. Bartonella was tested as negative, though Ehrlrichia shows IgG, and narrative of test does not rule out current infection of HME or other Ricketsial infection. Though each have names, I have HHV1 (cold sores, rarely), HHV3 (had chicken pocks, no complications), HHV4 (Chronic Epstein Barr repeatedly verfied through testing), HHV6 (am looking further into that), not HHV2,5,7,8. I only hope that this shotgun approach of antibiotics/antimicrobials/anti-parasytics/antivirals/antifungals/anti-??? slowly changing from one set to another and watching my liver actually clobbers whatever has infected me and caused my immune system to attack me; I don't care anymore if they pinpoint what it is/was, but that they get it gone! Gladly fungi have not taken their place. I did have Candida problem for years, but I guess eliminating that was the only good thing that came out of the divorce (my ex left me once I was disabled). IGeneX found the Lyme, and another lab found "previous" ehrlichia. Several acronyms here are new to me, though I might know what you mean if you spell them out: LLMD (I'm guessing Lyme Literate MD?), ILADS trained, OspA, PANS, antibiotics affecting auto-immune system directly, Methylation (in clinical context - can't be "add methyl group to a molecule..."). ("DD's Myco Pn" was a mystery until I figured DD is a name, Mycoplasma Pneumonia was the rest!) IVIG was refused for me, as not being of comparative value as I'm not in an acute stage. Elkova: I got your message, and see you removed it from here for privacy, I'll try to respond by PM but at the moment am overwhelmed. I guess that's worth mentioning (or maybe obvious): I get overwhelmed. For the most part, I'm doing much of what is suggested for about 13 years. It took me less than a year to figure out that allopaths are of no value past setting bones and stitching cuts (and to this day I wish I stitched one wound myself, due to a careless doctor), I don't take a pill until I have researched it thoroughly; and shrinks are for the most part just helpful to get advanced tests and stronger meds when needed. My attitude really pisses some of them off - so good thing I have plenty of other doctors to choose from! I have what's called "Medi-Medi" so I can go to any doctor I want that accepts it, and one doctor I've paid cash for 14 years - but for the most part he takes care of me pro-bono for nearly ten years. If I want to go to a doctor that takes only Medicare and not Medicaid, I simply leave off the Medicaid part from the form and (such that I can) pay them their co-pay out of pocket. I occassionally see different doctors than my "core group."
  11. 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)
  12. 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)
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