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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 was premature & messed him up so much that we ended up taking almost a year break while he recovered. Then we switched to an LLMD that was more into herbals and alternative which was better for his body but still didn't help much. He couldn't tolerate A-bart at all for some reason. Anyway so I don't know if his detox ability is that bad or he's that sensitive or what, but the LLMDs were of only limited help for us, sadly.
  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. Levofloxacin seemed to help years ago. I'm thinking of going to his regular doctor to get an Rx for it & then start him on some anti-bart herbs. Anyone out there dealing with bart who might be able to help steer me in the right direction?
  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 found this forum & suspected it was a bart rash. That purplish to reddish striated rash is pretty distinctive. I'll post a pic of my son's rash on his leg (he's also never been fat & his skin has never been stretched out by anything), but if you google "bartonella rash" and click on images, you'll see a lot of pictures of them. That actually helped with my family's skepticism - seeing my pix of the bizarre rash proved to them that there really is something out of the ordinary physically going on with my kids & mainstream medicine has no clue how to deal with it. I've looked at Buhner's protocols and felt the same sense of overwhelmed confusion so I'll continue watching this thread, too! Someone pointed me to Dr Zhang's book to learn more about his protocol, but a friend of mine just diagnosed with Lyme was telling me about Dr. Rawl's book "Unlocking Lyme" that she's reading. It all gets so confusing. If only there were pat, straightforward (affordable!) answers available. FWIW, my son says that of all the things we've tried, lomatium (we get it as SEES-plus capsules from Barlow Herbal.com) has done the most to improve his symptoms. Fair warning, though, it can cause a rash initially which does go away after about a week but itches miserably in the meantime (ours was actually like german measles which made me wonder if it releases viruses - including vaccine viruses - sequestered in the body) so if you do decide to try it, be sure to follow their instructions about how to minimize that possible effect. I didn't pay enough attention to that (in fairness, my husband had gone into the hospital for an aneurysm during the time we had started), and because I didn't realize what was going on till it was fully upon us, we had to just ride it out. Which made for a pretty miserable week. Afterward though, my son said he felt like he could think clearly for the first time in years.
  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 would escalate so we would have to pull back every time. We're pretty sure it's the bartonella that's causing him the most problems (the LLMD's agreed) & he got a nice ugly purple streaky rash for Easter after indulging in a whole lot of sweets and junk while his allergies were simultaneously peaking because it was too much for his immune system to handle. I can tell you that eating healthy and a green lifestyle has not been anything even remotely close to a miracle cure for us, but it does make a difference - everything you can do to strengthen his immune system or reduce the drags on it definitely helps. May I ask what treatment he went thru for mold?
  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's not going overboard.
  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 you can bring him to a place where he can handle the dr's visits. Natural treatments tend to be slower and more subtle, but for some of our kids that's an advantage.
  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 it that bad since & it seems to be slowly reducing in severity. We took him to an orthopedist who took x-rays & examined his knees and found nothing. He said we could take him to a pediatric specialist in the medical center, but we decided after researching online & talking to several parents whose kids also experienced similar, inexplicable "growing pains" that the expense was probably not worth it since it seemed like he might be slowly outgrowing whatever it is & dr's don't really seem to know what causes it anyway. Recently, he was selected for his martial arts school competition team & he is working out a lot more. He has begun complaining more often of the pain in the last few weeks. Ibuprofen does seem to help, but since our LLMD thinks we probably all have Lyme (we've only tested the 2 oldest kids who are currently being treated because we can't afford more), I am wondering if I should try giving him something herbal for Lyme to see if it will help, like maybe cat's claw, or am I more likely to mess things up if I start tinkering with things when we are not really able to get him properly treated yet?
  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's assistant by email & by phone beginning 3 wks ago to find out what could be provided to him, but she has not responded (I know these offices are busy, but this seems to be a problem with all the LLMD's we have worked with, & I really don't understand why they so frequently don't even acknowledge our calls at all. If they don't have time to do it, then saying so, instead of wasting my time that I don't have to spare either, would take less time than the time spent screening my repeated requests). Anyway, so I was thinking it would probably work better if I just came up with research and made a document & faxed it to them for the doctor to fill in the diagnoses & sign? Problem is, I'm not sure what research there is on human-to-human transmission. It seems to be similar to HIV in how it can happen. Is that right?
  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 probably not strep (because of the 5 negative rapid tests), but still leaves the door open for almost anything, right? No one's been running any fever, though, FWIW. My 21yo was up when I got home and says he actually feels sicker today. It is so tempting to go ahead & give him something I still have a leftover bottle of clindamycin caps from our old LLMD that's still in date & enough for more than 10 days treatment, but then that might complicate things & we have an appt w/ the dr for some labs on Monday. Should I grit my teeth and wait & see - or go ahead & use a drug that the old LLMD thought would be beneficial for his case & my ds had no problem taking previously?
  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 Suprax. During this time my 21yo got some of the symptoms and his tics got significantly worse (as they always do when he gets exposed to something). We still had some sx's after the Suprax was finished, but I attributed them to the drainage that was so very slowly beginning to move out of the ear canals. When the Christmas break was over, I learned that one of the families at our taekwondo school had the same sx's as us & had been dx'd with both flu and strep. Our family was finally starting to feel like it was just about gone about 2 wks ago, though, and I was hoping it wasn't an issue for us. Still my 21 yo's tics did not seem to be getting better - possibly were even a little worse - and I have been very worried about him. Then we had a taekwondo tournament this past Saturday & after it was over, we were so incredibly & unusually wiped out from it. Sure enough, by Monday we were developing sinus-crud & I though thought we were all fighting a cold. Until last night. My 18yo has been complaining about her throat hurting, but she is soo negative & complains all the time (bartonella doesn't help) that I have an unfortunate tendency to tune her out. Last night I finally took a look at her throat & freaked out when I saw what looked like white patches back there as well as being swollen & red. So today I ran all of us to the dr's office convinced that we have strep. Just got back from the dr’s & 5 rapid strep test$ later – the nurse practitioner says they’re all negative & she doesn’t see white patches in my 18yo's throat (suggested perhaps I was seeing drainage?). She did say that she saw signs of infection in the 4 kids that were there (my 21 yo didn’t go - his tics have made it so hard for him to get to bed that he is up almost all night right now) so she gave the 4 kids antibiotics anyway - amoxicillin 875mg 2xd x10days for the 2 older & Omnicef 250mg 2xd x10 days + zith for me but only if I feel like I'm getting worse over the weekend. I looked at my 18yo's throat after we got home from the dr's office. Now the white patches actually look more kind of yellowish, sort of like when the skin in the mouth gets ulcerated - except that her skin doesn't seem to be. She does have constant problems with candida so could it be that? But I would think that would be something even a nurse practitioner would have no problem recognizing. Could the fact that I've been having her gargle with salt water have anything to do with it? We've also been taking monolaurin, oregano oil, lysine, astragalus & olive leaf in my effort to help us get better. I am totally stymied! I know the rapid streps can give false negatives, but all 5 being so seems kind of less likely – yet what on earth did I see in my daughter's throat then? yeast overgrowth or is there some other bug that can cause patches at the back of the throat? - so I’m here to consult my strep experts in the PANDAS forum! We just switched to an LLMD in Colorado & have only seen him once, & I had to postpone our followup till April because of some major things that came up at the end of last year, so I don't know how willing he would be to call us in anything. Any advice?
  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 tolerable.
  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) every other day so that he doesn't look (or smell!) gross. It's challenging to say the least. I got him japanese knotweed, quercetin w/bromelain, stinging nettles & turmeric w/piperine. He's been on it for 24 hrs and says he can feel that they are helping some (he's 21 & has a pretty tough stomach so we are on full doses) - not as much as we wish they would, sigh, but at least the tics are no longer feeling out of control and increasing. He said at this point it feels like things are turning around at least, which helps with that sense of panic we all feel when the tics are skyrocketing. And there is a reasonable hope that the positive effect will increase as he continues to take them, I will try to post an update in a few days for those of you also dealing with allergies and tics!
  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 this pleasant dopamine-boosting treat because no matter how bad my week is, I know that I will at least feel good during that relatively short time period on Saturday nite & I don't want to lose that. So I am hoping to find a non-sugary way to get my fix, is there maybe an herbal tea or something that I might use instead? It wouldn't be quite the same but if it was at least soothing & relaxing it seems like it would still help!
  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 LLMD said that though it is impossible to know for certain, it seems most likely that my husband picked it up from his dogs, passed it to me, and then I passed it on to our children while I was pregnant with them. Testing for co-infections is even trickier - for example, my ds came up negative for bartonella from Igenex's testing, but his LLMD said they only have tests for 2 types of bart and there are about a dozen known varieties. That's before you start looking at the rates of false negatives because so many of these germs can evade detection. Many LLMD's encourage Igenex testing for Lyme but don't bother with the coinfections because of that. My ds developed tics around age 4, though we didn't recognize them as such at the time and referred to them as "habits" (in fact, around age 7, I started looking into OCD because I thought that might be his problem). I noticed that the tics did not wax and wane like Tourette's usually does; instead they just kept getting a little worse every time something hit his immune system (infections, allergies, vaccines, etc). He didn't actually qualify for a Tourette's diagnosis until around age 13, but even then the tics were only annoying but never really bad until his younger brother got sick summer of 2010 with what was most likely mycoplasma pneumoniae (which he had all the clinical symptoms of but still tested negative - but myco p is another one of those germs that is super hard to detect). Well, ds got only mild symptoms of his brother's illness (he never got really sick which we used to think was because he had a really strong immune system but now we understand was actually because the Lyme & bart had crippled it), but his tics exploded. It was so bad that my dh was thinking we might have to institutionalize him. My internet searches kept turning up links here at latitudes, & I realized that even though my ds had no significant history with strep, his story still sounded like so many of the kids here. We consulted a PANDAS dr. Even though all ds's strep testing was negative, he still responded positively to antibiotic treatment. We did try 2 IVIG treatments. The first one relieved his tics for ~1 week, then he got exposed to a cold virus and most of it came back. The second treatment showed no effect whatsoever. My understanding is that that is what happens when there is still an underlying infection that needs to be addressed. The IVIG can help with correcting the autoimmune reaction only if the germ(s) triggering that reaction have been eliminated. Believe me, I know how hard it is to deal with the ticcing, and it often seems like everything makes them worse and nothing makes them better, but the high ASO shows that this is more than TS. And based on the results you have seen thus far, it seems reasonable to believe that this is also more than just strep. If your son's symptoms fit the clinical picture for Lyme or one of its coinfections, an LLMD will give him a trial therapy and see how he responds. It can be hard - my son's main symptom is ticcing & every time we find something that works, we know because the die off initially makes the tics get worse. We have to go slowly so it doesn't get too overwhelming. Check with the members at LymeNet Europe - they can probably help you find what help is closest to you.
  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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