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Everything posted by lfran

  1. I was just starting to wonder the same thing. DS9 has PANDAS/Lyme and we banked the blood of his younger brother. I'd love to hear any thoughts.
  2. If she won't take baths, and you want to help with detox, you could try the magnesium sulfate cream from kirkman, and put it on her when she sleeps. (It goes on cold, though, and leaves a residue, so it might not work for her. My son hated it when we used it, but he was 7 then). Bactrim was prescribed for suspected bartonella. Not sure if it crosses the BBB but the zith she is on does for sure. Not sure if she is worse in symptoms since probiotics and detox...I have been increasing those all along from info on this forum since January. Do you think that could make things worse?
  3. In one of the lyme protocols ( I think Dr. Burrascano) they recommend turmeric. Just looked it up -- it's an anti inflammatory that crosses the BBB. You can buy it in health food stores.
  4. So sorry to hear this. One thought -- We are all strep carriers in our house, but when I got actual strep this winter, penicillin didn't help. They put me on cephalexin and that did it.
  5. You can buy a magnesium sulfate cream which is supposed to be very helpful at getting magnesium into the body. Or you can make your own from Epsom salts, but I never had any luck with that. Magnesium is supposed to be well absorbed topicaly. Kirkman makes the cream, I think. I think Magnesium is supposed to be important, because it is what the BB bugs feed on, so they use a lot of it up in Lyme's cases....but then, aren't we just feeding the bugs if we supplement with Magnesium?
  6. If you have unexplained tremors, you might want to consider the possibility of hyperthyroidism, which can cause hand and arm tremors. Kids can get hyperthyroidism. Here is a website for test recommendations: http://www.endocrineweb.com/conditions/hyperthyroidism/diagnosing-hyperthyroidism-overactivity-thyroid-gland It's an easy (and I think not too expensive) blood test. Make sure they test T3 and T4 along with the TSH. There is some difference of opinion as to normal levels of TSH. I am hypOthyroid and always feel best at TSH of 2.0 or lower (as do many patients). The "published" ra
  7. So, so sorry. You are in my thoughts and prayers.
  8. Thank you, everyone. That's very encouraging. I really appreciate it.
  9. There have been a lot of posts recently about problems with Lyme treatment, herxing, backsliding, etc. DS9 is just about to start. His tics are very frequent right now -- every few seconds. It's been this bad before, but not for a long time. My question -- given your experience, are you glad you went down this treatment path? Thanks.
  10. This is discouraging/frightening. I am just about to start Lyme treatment for DS9. He is postive for lyme via urine antigen test, equivocal on WB. He has been doing pretty well the last few months, so was holding off on treatment. Last few days, huge increase in tics. One example, he plays an instrument, and couldn't practice last night because tics were so high. Just sent off blood for coinfection testing yesterday. BUT...also had cransiosacral therapy the morning of the day the tics started to increase...and there are people out there who think that neck/jaw misalignment plays a huge
  11. Wilma, If blood tests are becoming a problem, there are a couple of urine tests you can do. One is usually done after provocation with antibiotics or herbs (the DOT BLOT) and the other is done without antibiotics, I think (PCR). Igenex runs both of them -- you can call them and ask. Like the blood tests, they don't always show positive -- I think only 30% of people with Lyme show positive, but it's noninvasive and not *too* expensive. They like 3 samples, to maximize catching the antigen, but you can do one or two -- we did two, at $70 each for the dot blot. Not sure what the PCR
  12. One thought re: the diarrhea. I talked with a compounding pharmacy about how to best give the meds and they said liquids are absorbed more quickly than pills and thus not as much of them reach the guts, so they are thought to be less difficult on the GI tract. Just a thought...
  13. Just following on the EE info, which I just googled and have a question. For the last 25 years, every once in a while,when I am eating, my throat constricts for about 1.5 seconds. Totally closes, then it opens and everything is normal. Really scary, but have learned to live with it. Always when eating bread or a bagel, never with anything else. But, I can eat these foods hundreds of times and be fine, and then wham! it happens. Only occurs about 5 or 6 times a year, so not frequent -- but for 25 years now! Not classically allergic to wheat or milk -- had those tested. Does this soun
  14. Sorry, I know I have seen this info before, but can't find it. I want to do coinfection testing: Babesia, Bartonella, MycoP, and Erlichia Which labs are best for which? Igenex has coinfection panel for Bart and babesia. Should I go there for that? Is MycoP lab-dependent? Otherwise, my HMO lab can do it. Who does erlichia well? Any other coinfections to request? I welcome any advice. Thanks!
  15. So sorry to hear what you are going through. I don't have an attorney referral for you, but here are some links that might help you. 1) The courts maintain a self-help website with information at http://www.courtinfo.ca.gov/selfhelp/ 2) Many courthouses have Family Law Information Centers where you can get free information about procedures and perhaps referrals. If you post where in Southern California you live, I may be able to tell you if your local courthouse has one. 3) Los Angeles Superior Court also has a Family Law Facilitator's office. Here is information: http://ww
  16. I've been using banana and frozen strawberries. If you're okay with dairy, adding kefir or yogurt can help thicken it. Otherwise, I've heard that crushing ice will give it the smoothie consistency.
  17. Sorry, I goofed. My canned coconut milk has no additives; the fresh from Whole Foods is from So Delicious and does have some additional additives. S
  18. Within the last couple of weeks, I read about a test that could help the doctor figure out which antibiotic is most likely to help each patient. I can't find that info again!!! Arrgh. If I read it here, can someone redirect me to the post? Or, if anyone knows anything about this, can you let me know? I think it was a blood test...not sure. Thanks!
  19. Whole Foods also has fresh Coconut milk that has no additives. Thank you.
  20. And one more thing -- I was reading an odd book about healing Lyme naturally and most of it didn't resonate with me, but they said that coconut milk had a lot of a particular substance (forget the name, sorry) that was very helpful against Lyme. Not sure how much I believe it, but hey -- I can buy it at the grocery store -- so I've been making smoothies and milkshakes with that. But that is just the last two days -- way after we've seen the improvements I posted about. I just thought that maybe the coconut milk can help us get at that last 5% or so. (I also have a standing appointment to
  21. Sure -- although, uncharacteristically for me, I didn't do tons of research first. I just went to the health food store and made a choice. This is what I chose: Jarrow Formula decaffinated green tea extract, 500 mg capsules. Paradise Essential Turmeric 16:1 concentrated potency, 250 mg capsule Source Naturals 1000 mcg methylb12 sublingual Our doctor said it was okay to give him the adult dosage (he's almost 90 pounds), so I give 1 or 2 of each of them each day (split am and pm). If you try them, let me know if they help. The first two are supposed to be strong anti inflammat
  22. lfran


    In a post for Wilma, you mentioned an email about Dr. J's interpretation of Igenex labs. I'd love to see that, too.

    Would you mind emailing it to me here as a PM? Thanks!

    -- Liane

  23. 31 and 39 are both considered to be specific for Lyme, but an IND stands for Indeterminate -- that is, they saw some reaction, but not strong enough to be considered a true positive. However lots of people who have Lyme will only show an IND, so a good LLMD can help you sort this out. Igenex itself says that the lab results are there to support a clinical diagnosis, not to diagnose the disease itself. Igenex will also run a follow-up test called a 31 kDa Epitope test, which I believe can be used when a 31 is IND. It helps to tell if the 31 IND is really from Lyme or not. You can call t
  24. Sort of. Western Blot is a type of test. Several labs will run a Western Blot on blood, but Igenex is considered to be the best. However, Igenex also runs a lot of other tests besides the Western Blot. Does that make sense?
  25. The auditory program was recommended by an OT. I had noticed my son saying "what" an awful lot, and he seemed hypersensitive to some noises, but his hearing tests were normal. We took him in for an auditory processing evaluation, which is different from a hearing test, and they said he had a large discrepancy between his two ears in his ability to process language, which made him a candidate for the program. The program is very simple. He uses special headphones (about $60) to listen to 30 minutes of music 5 nights a week. There are 10 CDs in the program (you go 1-10) and then you go
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