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JTs-Mom

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Everything posted by JTs-Mom

  1. Yes, the tics came back after he finished the antibiotic. My son is 13.
  2. Yes, this happened with my son (many years ago), but the tics came back. I always wondered if a longer course of abx may have ended them permanently. There is some evidence that certain bacterial infections can cause tics, e.g. Mycoplasma pneumonia (walking pneumonia) and borrelia burgdorferi (Lyme disease). I personally think it's worth exploring if you can find a doc willing to do the right testing. (Lyme testing is controversial.) Even so, don't get your hopes up that it will "cure" the tics. It didn't in my son's case, but I still felt better knowing we did what we could to treat underlying medical issues. My son's walking pneumonia caused almost no symptoms...only a very slight cough on occasion. We only had him tested for it because I found a case study that cited MP as the cause of tics. I was actually shocked when he came back positive. It also caused low cholesterol, which we also had no idea about until our doc decided to test that also. Good luck!
  3. I noticed you live in Virginia. My son also tested IGG positive for RMSF almost two years after having two tick bites and an EM rash and being diagnosed with Lyme. In southeastern Virginia, many ticks carry rickettsia parkeri which has been identified as the cause of Tidewater Spotted Fever. It is part of the spotted fever group of bacteria, but is not exactly the same as the bacteria that causes RMSF. The symptoms are not as severe as RMSF. I suspect it causes a positive result on the RMSF test. I'm fairly certain it is what caused my son's positive test result. Here's an article on it. 83% of ticks in the study were found to be infected at the beginning of 'tick season' in May which is when my son was bit. http://wwwnc.cdc.gov/eid/article/17/5/10-1836_article.htm My son's doctor did treat him with doxy briefly just to be sure the infection was addressed, even though it was two years after the tick bites. He was only 6 at the time, so we couldn't do doxy for very long... only about a week.
  4. I believe someone else on this forum said Dr. Fallon refers some pediatric patients to Dr. Ernest Visconti, a pediatric infectious disease doc in Staten Island, NY.
  5. Zithromax is known to be ototoxic (hard on the ears). I wouldn't take it if I was already having hearing problems.
  6. My son did not actually have incontinence as a symptom of Lyme, but he did have it after we started treatment for Lyme. He experienced one incident of bowel incontinence about a month after we started Lyme treatment last March. He also had several bouts of urinary incontince that same week and has had urinary incontinence issues intermittently ever since, even though we aren't currently treating the Lyme. He never had this issue until we started treatment shortly before his 6th birthday. He has been potty trained since age 3 and never had accidents up until that point, so we know it had something to do with stirring up the Lyme bacteria in his system.
  7. My child has: Lyme Chronic infection Chronic Strep Significant Immune Deficiency No known current infections What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? Per our infectious disease doctor, my ds does not have elevated anti-neuronals. I have not yet seen the #s. He just got the results a few days ago. What symptom group would you put your child in: tics only ocd only tics first, and ocd came later ocd first, tics came later completely balanced How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one 2-5 tics, urinary incontinence, emotional lability 6-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 tics, urinary incontinence, emotional lability 6-10 10+
  8. Separate issues. Biofilms are a slimy coating that bacteria can form to protect colonies. Biofilms often contain many types of microbes... bacteria, funguses, protozoas, etc. They all live happily together under the protection of a biofilm. Cysts are a particular form of the bacteria that occur typicially when the bacteria is exposed to adverse conditions (e.g. antibiotics). Bacteria such as borrelia will curl up into a round form which makes it much less suceptible to antibiotics. This transformation can occur quite rapidly. Here are two links that explain these concepts... http://biofilmbook.hypertextbookshop.com/public_version/contents/chapters/chapter001/section001/green/page001.html http://www.stcatherines.chsli.org/lifecyclepaper.pdf
  9. I'm pretty sure Debbie McCabe isn't an MD. Reading her bio on the NIHA website (http://www.nihadc.com/practitioners/deborah-mccabe.html), I'm not even sure if she's an ND. Looks like she was recently fined by the State Board of Maryland for 'practicing medicine without a license'. http://www.mbp.state.md.us/forms/sep10sanctions.pdf Not trying to discourage anyone from seeing Dr. B or Debbie. I just think everyone should be informed about the credentials and background of the practitioners they are seeing. I do like the idea that Dr. B is willing to take the "let's try it and see what happens" approach. Sometimes I think that's what it takes.
  10. I haven't had to deal with this issue, but did some research a while back when I assumed that insurance was going to stop paying. You can often find meds online for much cheaper than your local retail pharmacy. Just be sure that you are using a legit pharmacy (one that actually requires a prescription) so that you can be comfortable that you are actually getting legit meds. Check out pharmacychecker.com or legitscript.com. Also, the National Association of Boards of Pharmacy has a short list of pharmacies that are accredited. http://www.nabp.net/programs/accreditation/vipps/find-a-vipps-online-pharmacy/
  11. I'll send you a PM with some info.
  12. I had considered Dr. B also, but I also googled him and came across the same info. I know others have been happy with him, but it made me nervous about him. I always check the state medical board records for any doc I am considering. You may want to check out the Maryland Board of Medicine. https://www.mbp.state.md.us/bpqapp/ It's really hard to know. Some have raved about Dr. C in PA, but I took my son to her twice and was not pleased with her treatment approach. At some point, I think it's just trial and error until you find someone you are comfortable with. Unfortunately, that can sometimes mean a lot of different doc appts. Good luck!
  13. Jodie - What lab is used for this 'deeper' level of Bartonella testing?
  14. My son also has various types of rashes. He has the sandpaper rash on his face that SF Mom mentioned, and I've noticed that it seems to get much better after a 2-week course of Diflucan. It cleared almost entirely after a 4-week course of Diflucan, but then returned since he was on abx at the time. So, I'm fairly suspicious of yeast. He also has a similar rash around his elbows, and when I mentioned yeast to his PCP (a DAN doc), he immediately looked at his elbows (without me mentioning the rash). My son was taking approx. 400 billion cfu of probiotics (200 twice per day) while on abx. It still didn't seem to be enough to keep the yeast at bay. He also gets random, larger bumps (more zit-sized) on various places of his body... mainly back and buttocks, but he recently had one on his eyelid and 2 near the corner of his eye, plus a couple on his hands. I don't really know what these are from. I was suspicious of rickettsial organisms because he has antibodies for RMSF and typhus fever, though he never had acute disease for either of these. I don't recall seeing these bumps prior to treatment. It seems the treatment is stirring things up.
  15. Well... that is definitely a mixed bag of reactions. Let's hope you start seeing more of 'not so greats' gradually improve in time. Wish I could say we've seen improvement in the 8 months my son has been treated, but honestly we haven't. So, I guess some improvement is better than none.
  16. Thank you for sharing this! I have moments when I really get down about my son's situation, but I always pull myself out of it by remembering that things could be sooooo much worse and that I need to be grateful that he is extremely functional and happy and enjoying life like any other 6 year old. I AM grateful! I'm so sorry for your friend and her son.
  17. My son has seen her twice. I'll send you a PM.
  18. I took my son to see Dr. Visconti. I'll send you a PM.
  19. For those looking for scientific data... here's an article that indicates that 43.1% of the normal population tested positive on band 41 compared to 87.1% of the Lyme patients. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC265062/pdf/jcm00026-0126.pdf So, it seems the general statement that 'almost half of the normal population will test positive on band 41' is true. Nonetheless, it is obviously very prevalent in Lyme patients. The article also states that "such a high cross-reactivity of the 41 kda protein in the normal group could also be due to the oral infection with treponemes." The article is from 1991, so this isn't a new idea that Dr. Cunningham is proposing. Personally, I think band 41 alone on a western blot would warrant more investigation if there were also Lyme symptoms or other reasons to suspect Lyme, such as a history of a tick bite.
  20. Have you already tested for Mycoplasma Pneumoniae? What abx has your son been on? Just curious because you mention a cough (though not this time). That was my son's primary symptom for MP.
  21. My son pulled and twirled his hair for several weeks. He actually had a little bald spot on the back of his head. His primary symptom is motor tics, but he seemed to have a little more control over the hair pulling, so I viewed it more like a compulsion than a tic. I would suggest an alternative to him (rub gently instead of pull/twirl) and he seemed to respond to this. I don't recall it lasting more than a month or so.
  22. What herbs do you use for yeast? How do you give them the herbs... mixed in something? My son is 6 and can't swallow pills, doesn't like applesauce and doesn't want anything in his pudding. I'm already cramming so much stuff in his apple juice, I don't know how I'm going to get anything else down him, but he really needs something for yeast besides just taking probiotics.
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