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Everything posted by GraceUnderPressure

  1. Typically when we find something that works for him, the die off causes his neurological symptoms to increase. Unfortunately that's mostly his tics. All of the drs we've seen have warned that overwhelming his detox systems came lead to irreversible consequences. So we would start out slowly and if his tics increased significantly, the drs usually told us to half the dose. Rifampin really seemed to be promising, but his stomach couldn't tolerate it. We went all the way to emptying the capsules to just 1/4 the dose but his gut said no. The Dr then switched him to Tindamax which wa
  2. My 25 yr old has chronic neurological lyme, bartonella & some signs of babesia - who knows what else. Bart is the one that is causing the most problems by far though. It has given him Tourettes. We've been to several LLMDs but they have never been able to help much because every time we found an antibiotic that helped, he would get worse & we would have to pull back. And then we ran out of money. Now he's having new rashes showing up on his legs, itching that travels around his body & he's ticcing a whole lot more. Zithromax used to help but doesn't anymore. Lev
  3. We got our son tested for bartonella thru Igenex. It came up negative, but our LLMD at the time (a researcher & teaching dr in Missouri) said there are at least a dozen forms of bart so it doesn't mean a whole lot. My daughter also has bart & I realized it when we were doing swim lessons years ago because at the time she was still skinny as a twig & I noticed she had what looked like stretch marks on the backs of her legs. Like your son, my daughter had never been fat - nothing had stretched her skin so stretch marks was very obviously not the answer. Thankfully I had just
  4. I wish I could offer you something more than my sympathy, but my 25 yr old son has been struggling with neurolyme and bartonella, as well as mold allergies and more for years. He sounds very much like how you describe your son. In his case, in addition to low testosterone, and depression, it also causes him Tourette's syndrome. 3 PANS docs and 10-20 thousand plus dollars later, we've never been able to do more than clear his brain fog and reduce his tics slightly. Unfortunately, he has terrible detox genetics and every time we found something helpful, it overwhelmed his system and his tics
  5. Dopamine is the neurotransmitter that gets released when we eat (or participate in anything that gives a sense of pleasure) and provides a sense of well-being. Overeating, especially when your son says he doesn't feel well & wants you to help him feel better, can simply be that he's using the dopamine surge that comes from eating to "self medicate" or feel better temporarily. Unfortunately, self-medicating that way leads to further metabolic imbalances and can burn out dopamine receptors (similar to what happens with insulin in Type II diabetes), so it's important to make sure that he
  6. I wish I had something to offer you other than sympathy. My 24yo son has tics triggered by compulsions (his neurologist called it OCD without the O). We've done IVIG twice (brought him back 50% the 1st time, but only lasted a week, then no effect with the 2nd) & various antibiotic treatments, but every time we find something effective, his tics start escalating & we have to back off. We're currently looking into trying Stephen Buhner's herbal protocol and trying essential oils that others have had some success with. Maybe you can try some of the at home treatments to see if
  7. Fasting can be really bad for a person with thyroid or adrenal issues as well.
  8. My 8yo has complained of pain behind one or both knees that comes and goes for more than a year now. It does seem more likely to flare up when he's been working them harder in his martial arts class, but sometimes it does even when he's not doing anything. When it first hit, he was just about to belt test, and woke up that morning limping because the pain behind his right knee was so bad. He said when I touched it (I was going to lightly massage it), it hurt even more. Seemed sort of like a charley horse, but behind the knees rather than the calf, & it lasted hours. He has never had i
  9. My son's tics always increase whenever anything affects either his serotonin (exercise & sunlight increase serotonin) OR his dopamine. While my understanding is that dopamine is involved in ticcing, because hormones work on a feedback mechanism, with serotonin and dopamine being closely connected, they directly affect each other's levels in the endocrine system. I figured rises in serotonin probably cause his dopamine to fluctuate while the body adjusts its "setting". So I think it's not just increased dopamine, but the up & down fluctuations of adjustments that cause it.
  10. We have been very blessed that our kids' martial arts Master has hired our 2 oldest to assist at his school as there are few places they could work that would not have a problem with them taking a week off every couple of months to see a specialist in another state. He has asked me if I could provide him with a document for their files (for insurance purposes) that has their diagnoses & any special precautions that might need to be taken, or if none need to be taken, to prevent them infecting someone (bleeding is unusual, but it does sometimes happen). I tried contacting our LLMD'
  11. Thanks! We have used Minocin, but not in combo with anything & possibly not long enough so that could be a good possibiity. Any idea what the other antibiotic might have been?
  12. My 22yo ds (chronic neuro-lyme & bartonella w/possible babesia) was responding positively to rifampin, though it did increase his tics considerably. Unfortunately, his stomach could not tolerate it very well. We have not gotten as good a response with anything else since (though we may not have been on the Bactrim DS long enough to say for sure) The bartonella seems to be our toughest problem. Levaquin helped a bit. Been thru Zith & Biaxin, several cephalosporins, clindamycin. Done some herbal stuff. Hasn't been able to tolerate A-Bart yet. Anything else we might try?
  13. OMGosh, that was a great suggestion to google the images, but I'd advise against anyone with a weak stomach doing it - yuck. My 18yo's throat looks quite a bit like the first picture on this page - http://www.foodpyramid.com/conditions-disorders/white-spots-on-throat-causes-and-symptoms-10618/ (hers looks more like the right side of the throat in that pic with its spots as opposed to the left side with its patches) So from what the article at this link is saying, apparently you can have whilte spots & patches just from having inflamed tonsils. It that's correct, then it's probabl
  14. Help! I am so confused! Our background: 21yo dx'd w/Lyme and bartonella causing him to have Tourette's, 18yo w/bartonella rash & emotional lability. LLMDs think dh gave the Lyme or both to me, & I passed it on to our 5 kids during pregnancy. All but 2 of us got sick w/flu symptoms over Christmas break, but it was weird - we started to feel like we were getting better, but then we got sicker with our sinuses rapidly backing up to fill up our ear canals and leading to sore & swollen throats. My 18yo & I had to go to the dr & ended up with rx's for 10 days of Supra
  15. Our 21yo son has lyme and bartonella & probably other bugs too. IVIG for us happened before we started LLMD treatments. It gave us one week of noticeable improvement after the first & nothing after the second. His herxes have always been for his symptoms to get worse. Some of the antibiotics that were effective caused too much die off for his body to clear & we had to be careful not to let things go too far for fear we wouldn't be able to bring him back. The dr we are seeing now cycles his antibiotics & some of the herbs and that seems to make the herxes less severe/more t
  16. My ds's tics are compulsive but not OCD which means that he cannot rationalize away or thru his "monster" as we have un-affectionately dubbed his tics, they just happen. So unfortunately, because he has a ton of tics related to showers & baths, those are not an option & there's no desensitization or method for reducing them - in his type of case it's like trying to rationalize away the urge to sneeze (multiplied by about a hundred sneeze urges). It is a major deal for him to be able to take a "half" shower (he cannot physically step into the shower pan so he leans over it instead) ev
  17. Still, it does beg the question, how far does a company have to go before the FDA finally blocks them from doing business in this country?
  18. Made in India is starting to sound as worrisome as made in China...
  19. Texas has been one of the epicenters of the anti-chronic lyme persecution. We live near Houston and the closest LLMD's I know of are in Louisiana, Missouri & Colorado. Last year one of our legislators who had to go out of state to get treated for Lyme succeeded in getting some legislation passed to protect dr's here from being targeted by the IDSA dr's on the Medical Board but I don't know if any dr's here have had the courage to test the protective strength of the new laws. If anyone knows differently, please pm me, too!
  20. Are you using a chain pharmacy or an independent? I agree that it is infuriating that the pharmacies are not doing a better job at screening their drug sources (and these are the &%^$! that tell people not to get their drugs from Mexico or Canada or online because you just can't know what you're really getting).
  21. So the LLMD reminded us that we need to avoid sugar as much as possible while we're treating. I have been struggling with sugar cravings for a looong time. My biggest problem is that I have gotten into a cozy habit on Saturday nites of sitting down after the kids are in bed to watch a fluffy movie while eating a bowl of peanut butter with some other ingredients and chocolate chips sprinkled on top. It has become an addiction - an addiction I don't want to stop even though I know I need to. (It's not helping my weight either ) I spend my week looking forward to sitting down with th
  22. It stinks that the more messed up they are the more sensitive they are to allergens and then the more the allergens mess them up, etc. I'm going to pick up some quercetin + stinging nettles and get some more japanese knotweed in the morning and see what happens. We used to take them fairly regularly and then had to stop due to finances. Maybe since he hasn't had them in a while the effect will be more noticeable...
  23. Ugh! Thanks for the heads up! A painful reminder that we need to pay attention to what generic manufacturers our pharmacies are using. For some reason your link wasn't working & I had to look it up, let me try reposting it http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm256861.htm
  24. I would encourage you to check with people on the forum at LymeNet Europe http://www.lymeneteurope.org/forum/ Even our painfully conservative CDC states: "In Europe, endemic from southern Scandinavia into the northern Mediterranean countries of Italy, Spain, and Greece. Incidence is highest in central and Eastern European countries." Our family appeared to have close to zero risk for Lyme - we almost didn't even test for it but the moms here strongly encouraged me to do it anyway just in case (God bless them!). Even our PANDAS dr was stunned when it came out clearly positive. Our L
  25. My ds just started his new therapy this past week as I mentioned in another post & we've been trying to determine what is triggering his increase in tics - now today the ragweed, grass & mold are all up in our area & my poor guy is a real mess. The dr told us to go ahead & back off the meds till things calm down, but with ragweed peaking right now, it's like an earthquake is going off in his head & I'm worried he won't be calming down anytime soon. Has anyone found a way of dealing with seasonal allergies that actually helps tamp down a tic exacerbation?
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