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harpazo_hope's Achievements

  1. $1500 This was going to be my last resort... I understand with all the legal crap going on, but still...
  2. I have Lyme, and have these symptoms except I haven't had the change in eyesight measured because it wasn't severe. I've also had double vision when looking at near objects... and believe it is all neurological and involving the ocular nerve... I read about it anyway but can't remember a thing.
  3. I just hope that the Lyme board doesn't center around brain fog and anxiety as the only neurological symptoms of lyme, like all the other lyme boards and groups I've read.
  4. Yes, he tested positive for Lyme disease, but hasn't been tested since the first time. His LD symptoms remain... I don't know what the a cunningham test or a dan are. I haven't tried glycine or nac, but taurine made him vomit blood. I've considered ivig, but don't want the stress of dealing with insurance on top of everything else, and I don't know what pex is. The three week cycle is probably related to Lyme which has a usual four week cycle. I guess I will be searching these things out soon... I've kind of reached a stage where I am so utterly overwhelmed, I just want someone else to take over and help my son be well again.
  5. My son has been on many different antibiotics for over a year for Lyme disease and antifungals for the same period of time. We've also tried parasite herbal formulas, rife machine, cat's claw, GABA, a ton of other supplements over a year ago for the Tourette's syndrome part of it, different diets, and I'm positive I'm forgetting things. He hasn't changed much since I last posted... he has regressive behavior and speech, OCD now and anxiety, motor and vocal tics, and another list of physical ailments... all of which fluctuate over about a three week period.
  6. My son is still not well. I took him to an acupuncturist who suggested I check into the work of Dr. Amy Yasko - http://www.dramyyasko.com/. Has anyone tried her approach with PANDAS/PITANDS? I'm feeling desperate, and that scares me because I am so vulnerable. I would like to hear stories of PANDAS/PITANDS/Lyme disease kids going through this program.
  7. I think you have to be off of them for 2 weeks, but I might have that wrong.
  8. My son gets this too. He used to get what I thought were absence seizures, and his eyes looked the same. A family member saw my son talking strangely with his eyes looking like this and she thought he looked like he was on drugs.
  9. Hmmm....just like PANDAS! well, except for the part about being recognized by many docs... Chronic Lyme disease does not exist according to authorities. Neurological Lyme does not happen in children according to these same experts. Everyone outside of Connecticut is told Lyme doesn't exist in their state (exaggerated but close.) The official IDSA guidelines for treating Lyme disease DON'T WORK if you have been infected longer than (a few weeks?) You still get condescending smirks from local doctors when it is mentioned... And the list goes on and on... So PANDAS and Lyme kid parents are in the same boat of having a hard time finding a doc to treat.
  10. May is Lyme disease awareness month and they are offering 2 for 1 in honor of that for $34.95. http://www.underourskin.com/store_home.html
  11. My sister bought it for me when it was a pre-release or something. She borrowed it though and hasn't returned it. It is very good, and the book Cure Unknown is a must read. I remember that in June they were stopping sales on the documentary until the final product was out on the market. Maybe that is why it is expensive. I would hold out until then and check out the Under Our Skin website for news.
  12. Hi... I haven't read through your whole post very thoroughly nor the replies to it... sorry! I'm out of it this morning. I just picked up on your symptoms worsening with an accident. This happens a lot in Lyme disease. After surgery or a serious accident symptoms emerge in a once quiet infection. That's what happened to me with a c-section I think. You might want to look into Lyme disease also. I hope you find your answers! http://www.ilads.org/lyme_disease/about_lyme.html
  13. Here is a link on the western blot test. I would DEFINITELY consider lyme if band 66 came up. I would consider it if NO bands came up because often the most ill of lyme patients test negative. http://flash.lymenet.org/scripts/ultimateb...i/topic/1/42077? The GDU came from a company called Daniel Chapter 1 or 11 or 7 or something with an odd number... lol. Back to edit this again. I too am confused... is it Lyme or could it be another infection. That's where the PITANDS name comes in I guess... I don't care what is causing it. I just want to find out WHAT and have our kids better.
  14. Her test for Lyme was neg. I will def try the magnesium and epsom salt! We massage and place the heat pads with meds and have changed pillows. She has bad headaches right now too but this has been one of her symptoms all along. As far as the deep breathing--she would love that! Waiting IVIG and she said the first thing she wants to do when sneezing stops is take a deep breath in and let a deep breath out Not to drag it on, but did you see her western blot? Did she have *any* bands show up? A negative test means nothing and Lyme is a clinical diagnosis... but you're her mom with those mother's instincts that I would trust. My stiff neck was helped by a product called GDU... it had enzymes, turmeric, and some other anti-inflammatory herbs.
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