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Everything posted by GatsMom

  1. I hear ya! We're in the same boat, he found my son's, too. We've had to discontinue abx for a couple days because of a little stomach bug and his inability to eat much less take meds BUT week that we've been treating for myco instead of chasing down strep, he had a lessening in severity in all areas of his illness. I pray you have a wonderful result now that you'll be treating the right pathogen! Good for you!
  2. My son is another mycoplasma kid, discovered because of Dr. T. Yes, it does mean a different abx...a macrolide..like Azith or Biaxin (clarithromycin). Mine didn't respond initially to Azith but had a nice result from his first 5 days of Biaxin. We've had to abandon all meds in the past 48 hrs because of a stomach bug (which is really spinning his anxiety through the roof). My son is also completely asymptomatic with his mycoplasma...only his PANDAS symptoms of ocd, anxiety, tics, etc. Had Dr. T not tested for it, we would have never known.
  3. I'm so sorry. I have a teen, too, though his first exacerbation was at age 8. I think many, if not all, of us know the feeling of running your head into a wall in an attempt to get help for your child. Have you considered contacting Dr. T or Dr. K? My son is a patient of Dr. T's and while he's sometimes tough to get a hold of, he's very dedicated to these kids and you won't have to work to convince him of the impact or severity of her symptoms. Gat's mom
  4. As you know, Michael, we're right behind you. This is day 7 of biaxin 500mg twice daily for Gat. I wanted to wait to post, officially, on his last 7 days until I was really certain (I think we all have varying degrees of jinxing our success) but today, even Gat said in the context of a discussion with his girlfriend, "...and now that I'm getting better...". We are continuing to see gains that sound much like yours, Michael. Dr. T told me from the onset when looking at Gat's labwork surprise that we should see improvement within a few days once starting the right abs and we certainly have. Gat'
  5. Have thought about you many times since reading this earlier today. Have nothing to add except to say that you did a great job of handling a situation that absolutely had to be handled. Stay strong and know that others have been where you are and are keeping you in their thoughts.
  6. Good for you! Good for Lauren! They go through so much. I hope this is a huge success for her.
  7. The interesting thing about your question to me is, it reminds me of how being sensitive to these things as I have been for so many years puts me out of touch in how these things actually work, in that I've been avoiding them. What devices are involved in your setup? If it's just computers and the wireless router, then I think you'll have it covered when you address them. I'd want to make sure the wireless router wasn't sending out any signals. If it has no power, it can't do that, so sounds like that'll work as long it doesn't also have a backup battery. Computers set up for wireless als
  8. That, or there's the die off concept that when bacteria or fungi are killed in large quantities (at the hands of the abx) there is a load of toxic remains for the body to have to process. I couldn't begin to venture which is going on though I know either would be considered a step in the right direction. As sick as this kid is, I know his body has been given a huge chore in recovering itself. In my heart, I believe fully that the sooner you are on these pathogens the easier the recovery would be. We were 8 hard weeks in which is an improvement over being many months or years in, I guess. I kno
  9. Vickie, I was thinking just like you. Last night I had my Gat's dad go out and get my cough medicine (one without a drowsy quality & one with as well as a selection of cough drops). I had decided I would either wait to hear from Dr. T and his suggestion and try not to use either until then (unless things got crazy). Like you, I believe fully that a cough is the body's way of casting off a toxin of some kind (like a sneeze) but I had to be ready to weigh out the collateral damage, emotionally, of being taken to a high level of anxiety. Thankfully, it never came down to that decision. He did
  10. Boy, am I happy for you, if that makes sense. I can hear the hope in your words. He's a great doc, no question about it and who knows what he'll dig up when looking more closely at his immune system. You have direction and that's so important. By all means keep us posted. I'm sure sorry he's feeling crappy now but hope the downtime can supply you with some peace and time to focus on the answers that are surely coming. Gat's mom
  11. Lyme mom and Vickie: Thanks so much ladies. It's been a day here. I did read that article about the Gulf War Illness a couple days ago..very interesting stuff. I didn't know that Azith and Biaxin were good choices for Lyme so I do feel better about that. I'll be pushing for a repeat of almost all bloodwork in a month or so which I'm hoping will support on paper the recovery in my son (how's that for sounding hopeful?) Michael did mention to me his cough around day 7...thank Heaven he did too or I would have lost my mind today. I do believe that a herx shows a step in the right direction. I cou
  12. 17 v 1! Really!? I'd call that a little more than "significant". That is extremely interesting and the article mentions other infections like Borrelia Burgdorferi, which is the real name for Lyme Disease. I have read that 60 percent of lyme patients are "co-infected" with Mycoplasma P. The problem is the tests for Lyme are so unreliable that you could have it and not know it. I am pretty sure that the drugs used to treat lyme, treat Mycoplasma, but not sure if it works the other way around. Having multiple infections apparently makes it hard to get rid of lyme and the same is probably t
  13. 17 v 1! Really!? I'd call that a little more than "significant".
  14. Boy do I wish I had this information four years ago...and eight years ago when the whole nightmare got underway. Mycoplasma pneumoniae infection and Tourette's syndrome. Muller N, Riedel M, Blendinger C, Oberle K, Jacobs E, Abele-Horn M. Hospital for Psychiatry and Psychotherapy, Ludwig-Maximilians-University Munchen, Nussbaumstrasse 7, D-80336 Munchen, Germany. nmueller@psy.med.uni-muenchen.de An association between infection and Tourette's syndrome (TS) has been described repeatedly. A role for streptococcal infection (PANDAS) has been established for several years, but the
  15. How about melatonin in addition to epsom salts baths?
  16. Does anyone know if merely unplugging my wireless router from the electricity in the wall is enough at night? Many thanks
  17. I agree. While I can't control what he's exposed to in the community, I would think it would be so beneficial to contain exposure while he sleeps and hopefully make it easier for his body to do the healing its trying to do.
  18. I have one of those "no outward symptoms" kids. Both the strep of middle school and the myco p of this exacerbation have been completely and utterly without classic symptom presentation. How to handle the fact that is often sick without noticeable signs (until things are really bad) is what we'll be working on down the road. Right now my main objective is getting this myco p out of his system and seeing if we need to address the slightly elevated ASO titer we had this time. I should mention, he slept 9 hours last night instead of the usual 12. Way less throat clearing at bedtime and no app
  19. Four yrs ago, the very week I found PANDAS during my nightly online symtpom cluster searches, my exhusband was talking to his 20'something neighbor who was asking how Gat was doing knowing how sick he was. She was standing with a friend about the same age. When my ex explained that I found what I was sure was it (PANDAS) the young girl with her became teary and explained that 10 yrs b4 she had been diagnosed with it. She told my ex about the ###### she and her parents went through and by then all three of them standing there were in tears. He said that although he was almost afraid to ask, he
  20. Melanie, Azith does treat it, we just didn't see a result in my son with it. Biaxin, I believe, is a bigger gun. Both antibiotics are in a class called macrolides which is the class used to treat myco p. I'm wondering, like you, if the rest of the family should be tested/treated. Gat's mom
  21. I learned something interesting about GABA from our herbalist. She gives what she calls the GABA challenge test when she suspects a problem with the blood brain barrier. She gives the GABA and if the patient feels any sensitivity to it (relaxed, calmer etc) she knows the patient has an BBB issue. She told me the GABA molecule is large enough that it should not be able to pass across the barrier and if it does and an effect is felt it's a not a good sign. The first order of business she would recommend with someone who does respond is switching to a gluten free diet. Just thought I'd throw it o
  22. We'll see, I suppose. This kid is having the best day he's had in the better part of a month. The biaxin is specifically to treat mycoplasma. I don't know if it is particularly useful for strep. I do know that Azith can work for both strep and myco p but in my son, his 17 days of azith didn't seem to produce a result and certainly nothing like what we've seen so far today. We also started a 5 day dose pack (which we are doing about about half strength due to his sensitivity to stimulating meds) so I know that, too, may be to credit for his good day...or it could just be a good day. We'll see h
  23. Agree, concise and easy to under. Should be a required read for anyone who is going to work with kids.
  24. If we can come up with a united subject to vote on, I know my camp could supply hundreds of votes. I'll bet we all could. I saw that during superbowl, too. Great idea, P.Mom
  25. Mycoplasma pneumoniae in the case of my son's labs.
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