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philamom

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Everything posted by philamom

  1. Yes, you can check viruses through blood work. We see Dr. B and Dr. J in CT. Did have our daughter's first ivig with Dr. K in 2009, b4 we found out that we were also dealing with lyme and bartonella. Also saw Dr. T once in 2009.
  2. On Dr. Phil right now. East coast.
  3. The lyme should be tested through Igenex. I doubt he will do that, so the very least ask him to run both the Elisa and Western blot through whatever lab you're using. In my opinion, the conventional labs are useless for testing lyme (many reasons why) - again my opinion. Pneumococcal IgG 14 Serotype Mycoplama pneumonia ANA, sed rate, crp
  4. Yes. But it need not be an LLMD. A family doctor, DO, Chiropractor could run Igenex. You can print the order form off their website. I suggest just running the Western Blot Igm/igg for $200 to see what shows up. Many times, tick-borne co-infections are also involved, but that is something you could look into later if needed.
  5. Make sure the dr checking for lyme is not using standard Elisa/Western Blot through traditional labs like quest, lab corp. It is just not reliable! (imho) Better to order the Western blot Igm/Igg through a lab like Igenex who looks for more specific bands and allows more time.
  6. Thx everyone. She has another session this evening - will see what happens. Thanks for the tip smartyj.
  7. Started physical therapy last night. Woke up with a massive migraine this morning (like an IVIG headache she says). Still in bed. Treated with Motrin and Tylenol (usually try to avoid Tylenol), cold wash rags. Inflammation? Coincidence?
  8. I wish I had some helpful advice - sending prayers your way...
  9. Same here - like dsmom and smarty. We have been monitoring d levels for a few years, every 3 months. She ranges around 25 in winter months and borderline low normal in summer. When not on sun sensitivity medicine in summer, I relax on the sunscreen. I wait a bit before putting it on. Never see any adverse to reaction to sun - just all vit d products. I'm going to try and push through this summer - starting with once a week (200 iu) and seeing if I can move forward. My child reacts after one capsule. Someone mentioned taking it with vit k. Maybe we'll see if that makes a difference. LLMD feels it vital for improving.
  10. Can you get her to take some probiotics while on it (and afterwards for a bit).
  11. You may search for older posts - I remember it being discussed before. I thought my daughter was dealing with a staph infection with her leg at one time, but it ended up being something different- erythema nodosum. Are you dealing with Mrsa?
  12. Saw Dr. J today. He said it was a shoulder subluxation (partial dislocation). Sounds about right. Needs physical therapy.
  13. Thank you. Look forward to hearing more. Had an issue arise Thursday night -daughter's vomiting phobia is back in play and reached out to her therapist, but she was headed to conference. Love hearing that.
  14. This was the exact scenario when my daughter was younger. Dr. B will be helpful.
  15. I bumped it up. Go to the link Chemar posted. I think the first link doesn't open to the petition.
  16. I use a few (culturelle, florastor, integrative pearls) but my favorite is Klaire Ther-biotic detox support. Cant get rid of the underline - sorry.
  17. Like Nancy D, my daughter reacts very poorly to vit d - even after one capsule. I've tried numerous dosage and brands at different times, with no success. In our case, it causes really bad mood regulation like mentioned. This was on the lowest dose I could find. My dd has lyme/bart/pandas. Suggestion- maybe take him off and wait till he is back to previous baseline, then start with a very low dose (200iu) every 3rd or 4th day and see if there is a reaction.
  18. What gets me mad is that she saw two doctors since January 10th for this issue, and I was too afraid to mention that I'm treating her for lyme. When asked if she is taking any medicine, I said no - just some vitamins and supplements. The doctors are part of the big hospitals in Philly area, and I know they don't stand behind chronic lyme or pandas/pans. I'm always concerned about what is happening at Boston hosp. So now I'm jeopardizing her health by lying I'm also paranoid after fighting a 3 year battle with my daughter's school district regarding my daughters diagnosis and treatment, even though she has labs to support her infections. In my own happy world, I would have a specialist to confide with in each needed area. I'm glad were seeing our llmd this weekend. I had to cancel twice already due to snowstorms - so little behind. He will be mad that I wasn't upfront with the orthopedist.
  19. She is on doryx and bactrim. Is doryx a fluroquin? edit- yeah, that may be it - tendon rupture. Bummer, she's been doing so great on the doryx.
  20. Well you know we've been dealing with these infections for years, and had/have our share of migrating pain. Usually its more diffused. Had a year or more of tingling pain in arms and legs, but no longer an issue. Had leg pain - erythema nodosum. A lot of weird off/on pains that couldn't really be explained. ANA is positive for 2+ years now - since Nov 2011. Have LLMD appt this weekend - will bring it up with him. I'm wondering if its a herx from new antibiotic. Thx
  21. Daughter has been dealing with a shoulder injury since early January. Had x-ray which was normal. Moved on to an orthopedist two weeks ago. He put daughter in sling, which she absolutely hates, and hasn't been wearing it 100 percent like she supposed too. Today I had to pick her up from school because she said the bone came out of the socket and popped back in. Very painful. Its what happened when this all started too. She did have the sling on all day. Nothing specific caused it to pop out. And nothing specific caused this injury. I thought maybe she slept on it wrong, when it all started. Now wondering if its related to the lyme or bart. She is still testing positive, and began a new abx protocol in November. Anyone else have complaints of shoulder coming out of socket?
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