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Everything posted by Priscilla

  1. we were also given a specific probiotic which required a Dr code to purchase. Hmmmmmm
  2. unfortunately, I think that may be the case with the ivig also.
  3. lyme is very good at morphing, evading, as well as invading the immune system. It is known to cause autoimmune issues. My dd had elevated titers with no recent confirmed strep. In retrospect, she could have had it passed in utero, or from a bite at 3 yrs old. My thought on the connection is that lyme wreaks such havoc on the immune system that it can actually trick it into thinking there is strep even when there isn't. Lyme can change its surface proteins and may very closely resemble strep. Therefore, someone with a previous strep exposure will have the strep antibodies (from their memory cel
  4. Thank you for this post. Would be nice if it was a little closer:) good idea though and will hopefully catch on.
  5. oh yes, my dd was 8 and trying to jump from moving car, window, pulling out knives in kitchen and even tried to jump head first off the kitchen counter
  6. seems to me it may be the same dr pathfinder, he also recommended it to us but we didnt do it. By the way we are doing great, how about you?
  7. OK 3rd time I am trying to reply, keeps erasing>> uggh. We tried it for several months, very stressful, expensive, and no effect on issues. Made her feel even more different. We thought PANDAS for almost a year and treated, then found LYME +, treating for lyme has been VERY SUCCESSFUL. Went back to our normal healthy eating habits. I don't recommend it from our experience but I know others feel it helps. This is just our experience.
  8. funny you mention this because I had burning in my fingers which progressed to my hands and forearms just about a week ago. It only lasted for about 2 days but it was very concerning. I was bitten by a tick last september but haven't had any testing so not sure if it was related. When it was happening I was looking for a cause and came across low calcium as a cause. I just took a calcium supplement for 2 days and it has stopped. May just be coincidence>>> not sure what to make of it.
  9. interesting. My little dog too has OCD with licking.... he will lick the pillow, couch, bed..... incessantly, very obvious OCD like behaviour. I have actually wondered how many families on here have pets with OCD. I also had my older dog die in 2008 which had severe joint pain, occasional seizures, and progressive aggression into his last year. I worked as a Registered Veterinary Techician for over 10 years and saw ALOT of unexplained neurological deterioration in dogs. My daughter has been diagnosed with Lyme disease, and has improved dramatically with treatment. Dogs are known to contract an
  10. my dd had more of a "lingering touch" if you touched her, she could feel it and would demand us to take it off (since about 3 yrs old) especially on her head. I considered this a "hypersensivity" reaction- because she could truly "feel" it. I am curious about the ear drops though. I have tasted eye drops myself- could the sinus area have a "breach" that is causing the fluid to cause her that sensation? Well we have been fighting these issues for several years and very severe since april 2010. We got a lyme diagnosis (which hypersensitivty is a symptom of, along with almost every other:( we ar
  11. for us there was ALOT of morphing of the OCD. Sometimes week to week, sometimes day to day. even with a consistent abx. I think it is important to know that this is a VERY slow process. For us, changing things too quickly seemed to set us back and make it to hard to see what was going on. It was once I stopped changing things, and eliminated many variables that I was able to see what was really going on. It took several weeks to months to start seeing improvement with a consistent regimen. Noticed that the slipping was probably coming in cycles even though we were being consistent. Our best pr
  12. Looking at our last labs the result seems to repeat itself- the most recent is 40 listed under: CD 57+ CD 57+/CD 3+ CD 57+/ CD 3+/ CD 8+ CD 57+/ CD 3+/ CD 8+ The 40 is listed under each of these. We use the Quest in San Juan Capistrano which I think is the first Quest to perform the CD 57 specific for Lyme- I had thought it was the only Quest to do it, but who knows. I have even heard it is not reliable for children. I have just decided to measure it to see if it corellates with her progress which so far it has. Hope that helps:)
  13. I am no expert here but our llmd only uses quest or igenex for the cd 57. we had a pos igenex and a cd 57 from quest at 28! After my results I started looking more into the cd 57 and saw alot of recommendations for labcorp but there was 2 problems with that. My dr doesn't use them, and I had already recieved a result consistent with lyme from quest. I decided to stick with quest. We repeated the cd 57 with quest about 6 weeks ago and the increase to 40 strongly correllates with my dd's improvement! I think it is wise to stick with the same lab whichever you choose to measure your progress, so
  14. While B cells accumulated in large numbers and made some specific antibodies against B. burgdorferi, they did not form “germinal centers,” structures that are needed for the generation of highly functional and long-lived antibody responses. Interesting- hence the reason for false neg on WB I keep thinking the confusion lyme causes in the immune system is why we get elevated strep titers without evidence of strep (our case) I really feel lyme causes PANDAS, along with all the other autoimmune diseases it triggers.....Hope we figure it out soon
  15. I just want to say we were at the point of fed up. i went off abx 4 x! EVERY time my dd got worse, some times within the week, and another time she slowly deteriorated over 2 mos. We were on all the supplements and clay for several months. I personally felt it was too many variables, when I took her of the abx for 2 mos, I took her off EVERYTHING! That was when she lasted the longest. We have now been on abx for over a year- actually we are now on 2. I struggled with keeping her on long term abx for several months... she was so tormented by her own mind (suicidal at 8 yrs old!) then I gave in
  16. I know where you are, I have been there. I actually strayed from the forum for a while but I check in periodically. I was in a very bad place last year and when you start to get better, I guess you just really want to move on and get back on track. I check in for this reason though, I have been where so many other moms are just coming into. I have a 9 yr old dd. She had some on and off mild issues from a very young age. Now, in retrospect she was sick for a long time. Just after her 8th birthday she went crazy pretty quickly: very defiant, aggressive, fidgety, ticcing, OCD.. then within 1 week
  17. Hello Priscilla Good article. I thought I heard someone saying that there is also correlation between full moon and lyme. I personally think altitude has something to do with lyme as well. ( at least the kind my ds has) I always noticed my ds's pandas/bartonella symptom flared up when we were at certain altitude ( ski or fishing trip to big bear or mammoth lake often and every time when we were coming down from mountain, he would have a complete break down---I would spare you the details) My son and I went to New York a couple of weeks ago and whenever we were landing, he once again
  18. your 9 year old sounds ALOT like my 9 yr old dd. Had random tics for several years, alot of tummy aches, not so much the headaches but occasional chest pain. She went south fast last year and we treated for PANDAS for several months, then I gave into the possibility of LYME. If you are in VA I would DEFINITELY educate yourself as much as possible and test/treat. We live in So Cal but I grew up in Md so I thought possible I passed it, although now I know it is prevelant in Ca too. Anyway, we have seen the best results since treating for lyme. She had an Igenex positive for chronic infection, wo
  19. http://www.lymenet.de/symptoms/cycles/evalsum.htm I posted this yesterday as I was thinking about my dd flares. She is pretty consistent at every 4 weeks. I found the analogies very interesting, and it solidifies my belief in the link between PANDAS and Lyme..... INFLAMMATION as the niches leak (sound familiar from PANDAS) I have been so topsy turvy over this last year trying to get her well, but now that we have stablilized treatment over the last several months it allows me to notice the pattern without all the other variables. The flares certainly come about every four weeks, but are les
  20. Came across this while look for reason my dd has a pattern of flares with Lyme. Struck me when thinking about how PANDAS has been known to subside at onset of menses. I little technical, but I get the idea there is a strong link. Any thoughts? http://www.lymenet.de/symptoms/cycles/evalsum.htm
  21. Just wondering, my Lyme diagnosed dd often says she just gets itchy all over whenever we get a heat wave. When she wasn't doing well I noticed it would really exacerbate her anxiety and symptoms. Thankfully she is thinking so much clearer and she can verbalize how the heat irritates her. I am just wondering if anyone elso has heard of this with lyme or other TBI?
  22. oh just to add, we did 4 HD IVIG when treating for PANDAS.. we saw improvement in baseline but still alot of OCD and tics. I think the IVIG helped fight the lyme also, then then the tweeking of abx, along with time has started to pull it all together for her- and lets not forget FAITH!!
  23. just want to add a quick YES, nothing is 100% certain, but I know my dd started getting better once we got a lyme diagnosis and started with a LLMD. I think she is still fighting some OCD, but that's just it, SHE'S FIGHTING IT! She has done a complete turn around from just last summer, and in some ways she is 150% better than she she's been since, well maybe since birth! Could be a congenital issue here too but can't say for sure because I haven't been tested yet. But the answer is YES-I was so skeptical of LYME, but I have to admit, the proof is in the pudding, she is getting better:)
  24. sorry to hear this, as if this isn't hard enough. I don't know if you first had a PANDAS diagnosis you may be able to ask for some advice from Beth Maloney. I am not sure where she stands on the lyme issue but she was an attorney ad litem so she may have some insight in the fight for you. Maybe if she could just use her profile to help you convince those necessary that this is a MEDICAL problem. I don't know, I will pray for you.
  25. we did IVIG- I feel they helped improve our baseline- happier child. I visit now and again, but a recent Lyme diagnosis and starting of treatment (which so far is conservative, just an addition of abx) has improved us so far to a pretty happy functional level. Just a few quirks left to work out with the OCD but doing well so far. Just gets overwhelming to think about going back to that place so sometimes I stay away. I do want to be able to come back soon "certain" that the lyme treatment is our cure, share our whole story, and help as many as possible. I was a huge lyme skeptic, but we are do
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