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Everything posted by lfran

  1. Can anyone tell me how much it tends to cost to have a tonsillectomy (either with or without insurance)? And does blue cross tend to cover it for PANDAS kids? I have the option to switch to BC soon, but not sure that I want to, so wondering how much T&A costs out-of-pocket if I can't get my HMO to approve.
  2. DS10 has lyme and bartonella (confirmed by antibodies). Has been on rifampin for bart almost 4 months. Will be getting repeat bartonella antibody test results back next week. But, how does one decide to stop rifampin? Is it based on resolution of symptoms (which may overlap with Lyme? Or when antibodies decrease? Or...?) Would love to hear other people's stories before our results come back. Thanks.
  3. Wow, I may ask for an increased dose, then. He is 92 pounds, on 300 mg once per day (Capsules are 300 mg. Maybe there are other forumulations to get to 400). But, he is also on two other abx, so maybe that's why his dosage is lower than what you guys are on.
  4. Which abx are you on? Strange as it may seem, I am sure that my DS10's anxiety is made worse by amoxicillin. I'm pretty sure I can track his anxiety starting to starting amox. When we finally took him off amox it got better very quickly. Switched him to omnicef and the anxiety (extremely severe, but only at night) is GONE. Other son also had a bad reaction to amox, so there may be something in my family's genetic makeup with that particular abx. I know it seems odd, but with two kids showing this, I am covinced. quote name='AmySLP' timestamp='1317373325' post='122258'] My worst fear h
  5. Our immunologist said pretty much the same thing re: IgG and IgE food testing.
  6. He's already on it, in a pill form. But it was just prescribed for my younger son for sinusitis, at a higher dose than my DS10 (Lyme/bartonella) so I was wondering about lyme dosages. Do you know how many mgs are in your 4 ml? Thanks!
  7. Anyone here on acyclovir? If so, can you tell me why and if it is helping? Thx
  8. Can those of you on omnicef post dosages and weights? I'd really appreciate it. Thanks.
  9. You're welcome. I just thought it was interesting, because DS10 would have been a definite postive by European standards. It seems band 58 is much more common in a European strain (b. afzelli) than in the strain that is more common in the US
  10. You can deduct medical expenses and mileage on your 1040 but only for the amounts that are greater than 7.5% of your AGI. Totally stinks. (You can deduct health insurance premiums, if they are not paid for by your employer). Supplements are only deductible when prescribed/recommended by an MD, I think.
  11. Sorry - there seemed to be something wrong with the original link. Try this one. It is really a wonderful article (IMHO!) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/
  12. I really like this published paper. The authors review and compare the various laboratory rules for postive lyme diagnosis in Europe and give % specificity and % sensitivity for the various combinations. http://jcm.asm.org/c.../full/38/6/2097 If you look at table 10, you will see the "rules" for the labs as well as the author's suggested rules, based on their analyses. For instance, you can see that a 2-band positive of p58 and p41 together have a specificity of 94% (only 6% false positive rate) which is extremely good. If I'm reading this right. Anyone want to comment?
  13. One more thing. Igenex doesn't care who orders their tests, as long as it is a medical professional. I went to my chiropractor at first, and there is even something you can have the medical practictioner sign for igenex so that igenex will send the results directly to you. So you don't have to go to an LLMD for that -- just find someone willing to sign the paperwork for you. Second, your DD has a lot more positive bands than my son does. However, both your DD and my DS have band 58 positive, which in Europe is considered very significant (they have a strain of lyme there that is call
  14. Hi Eljomom. I know it is hard to know what to do. I have read a lot of your posts, and am/have been in a very similar position. A basically "happy" kid with mainly tics and anxiety, and only low level compulsions. Negative western blot, told not to pursue lyme by our PANDAS doc. BUT...I did anyway. And here is why. First, although DS's western blot was CDC and Igenex negative, he did have band 58 and band 41 positive and when I started looking into it, it seemed that if we were in Europe, that would be enough to declare him positive in Europe from at least some European labs. Also
  15. You might want to take a look at this site. I went and heard them speak about thyroid issues and they were very comprehensive. They also have a very thorough literature review on Lyme, which is how I found them. http://aitrk.holtorfmed.com/thyroid-disorders.html
  16. Hi all. Could use some perspective. DS10 has been on lyme treatment for 4 months, bartonella tx for 3 months. Since that time, many things have improved. Mood and behavior, huge improvement. Cognitive abilities and concentration, huge improvement. Compulsions, now pretty low. Anxiety was high, but just switched abx one week ago and now anxiety seems on its way out. But, with the switch in abx (and/or dental work that happened at about the same time), his tics have increased to almost one every 4 seconds. He is shaking and jerking his head CONSTANTLY, followed by a more complica
  17. I spent years not being able to return to sleep once I was awakened. Turned out I was hypothyroid, which can really mess with your sleeping. When I got that adjusted, I was able to a) sleep through the night and return to sleep once awakened, even if up to help a child. It's an easy test, and easy to "fix". It is very common in women post-childbearing. Getting that addressed changed my life. The "standard" ranges of up to 4.0 as being normal are not accepted by many specialists, who consider up to 2.0 to be normal and over 2.0 as potentially requiring treatment. Just a thought, t
  18. You are in my thoughts and prayers. It is unconscionable that these side effects were not told to you. I was put on 30 mg prednisone for 5 days last year for tendinitis and I weighed about 135 at the time! And I also experienced frequent urination, etc. My physical therapist was very concerned when she heard about my dosage -- she thought it was very high. And I was angry at my doc for not telling me about side effects and he made no plans to taper me -- fortunately I knew about tapering and got a tapering plan from a different MD. I am wishing your son a speedy and uneventful recove
  19. Honestly, right now, not much. Lots of things are better, but tics are really high. On several abx (including rifampin) and b vitamins, epsom salt baths, and oat bran tablets (instead of cholestyramine, which I am scared of because I took it when a young adult with the very bad side effect of depression for me). No one recommended the oat bran, just thought of it myself -- hope it's an okay thing!
  20. You can call Igenex and ask them about specific tests and whether or not antibiotics are okay. After you get your results, you can even call on a Monday or Tuesday and talk to the lab director (Dr. Harris) about your results. He does that often -- you just have to ask. My son took the urine dot blot while on antibiotics --- many llmds specifically recommend to be on antibiotics for this test. That showed up positive for lyme -- they capture the shed antigen in the urine. They suggest doing three urine captures at $70 a pop -- we did two and were positive on one and negative on the othe
  21. Just sent you a Private Message (PM). Thanks!
  22. Wow -- I have been hesitant to test myself for fear of what I would find -- but with all these moms coming up positive, maybe I should. I know I had bartonella as a teen -- I tested positive for cat scratch fever (b. henselae), but neither my mother nor I remember if I was actually treated for it! No real symptoms myself, just low level anxiety. Can you post what B vitamins you are using? We need to do the same for DS10, but I thought some b complex weren't good (too much folic acid, etc) and would love more info. Thanks. Also, can you post the detox protocol? Many thanks.
  23. Extreme exhaustion can be caused by hypothyroidism. It certainly was for me. You may want to have that tested the next time you have a blood draw. You want a measure of at least TSH, free T3 and free T4.
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