Discussion in 'Fibromyalgia Main Forum' started by pumpkinpatch, Feb 6, 2006.

  1. pumpkinpatch

    pumpkinpatch New Member

    Well I finally made it to the LLMD. My son and I drove the 9 hrs. through it seemed like every weather pattern! Rocky Mountains.

    I had faxed him my whole HEALTH RUN-DOWN on one page, when everything started, my symptoms, the doctors I've seen, FFC, etc. He mentioned how helpful that was right away.

    Anyway he diagnosed me both clinically and through the Igenex IgM. I totally failed the neuro part of the exam. When he asked me to stand-up, close my eyes and try to touch my nose. I started to fall as soon as I closed my eyes. Didn't realize how dizzy I was. Also can't remember or subtract anymore. My mind is BLANK!

    Told me the doxy and biaxin I've been on through the FFC was good and he put me on 2 new ones. Tinidaloze and amozillan (sp). Have to start treating with cysts busters. Doctor said tini will help with the stiff pain. My neck and upper back and calves are the worse.

    I do know one thing is that the electrical zappy shocks in my head are leaving but I still have lots of pressure in my head and sore fuzzy eye-balls so maybe it was time to change up my antibiotics.

    I just wanted to tell someone. It was a long weekend and my son and I got stranded on the way back. Had to stay overnight because of avalanche in Ravelstoke National park.

  2. ldbgcoleman

    ldbgcoleman New Member

    Cindy glad to hear youre doing alright! I have been on vacation for the past two weeks and just getting back into things.

    Just wanted you to know that I can't do Math anymore either. The feeling ditzy part of all of this has really gotten to me at times. I have to triple check my Math when I balance my checkbook etc...

    Even though I am feeling better I still have my days!

    Take Care and get some rest! Lynn
  3. pumpkinpatch

    pumpkinpatch New Member

    I will go over to lymenet and e-mail you. Your encouragement is much appreciated.

    Lynn: Thanks for checking in. Will e-mail you to update you on our house construction!
  4. victoria

    victoria New Member

    I have a question for you - you mentioned facial pressure - did this feel like sinus pressure to you, even tho no scans or anything showed an infection?

    Just wondering, something I've been dealing with for a few too many years...

  5. Countrymom

    Countrymom New Member

    Thanks for your post,

    I go back to the FFC on the 20th and want to ask about adding a cyst buster. Are you still on doxy and biaxin as well? Or is this instead of?

    Thanks, glad your trip went well.

  6. pumpkinpatch

    pumpkinpatch New Member

    I just couldn't handle the biaxin anymore. Actually over the last month haven't taken any biaxin. Just totally ruined my appetite and was losing too much weight. So I was only on the doxycycline.

    Anyway the LLMD mentioned that the doxy kills the spirochette but not the cycts so have to add something for that. I'm to start tinidazole which is suppose to be better tolerated then the flagl and really gets through the blood barrier. Instead of the doxy I add ammoxicillian. So that's tini and amox. He mentioned that since I've already been on something for the last 6 months I shouldn't herx as bad.

    I can't believe this man. I phoned his office today about the tini and the secretary passed me right through to him. He wants to see me again in one month.

  7. hopeful4

    hopeful4 New Member

    I'm so amazed that you were able to make that 9-hr. drive through the Rockies at all!!

    Your LLMD sounds like he knows what he's doing! That's very encouraging.

    I'm being treated at the Seattle FFC and will stick with it for now with the lyme treatment. There may come a time when I will also find an LLMD.

    Wishing you much success with your new meds. Please let us know how your treatment progresses. How is your son? Does he also have lyme??

    Take care, be well,
  8. pumpkinpatch

    pumpkinpatch New Member

    Hopeful: My son doesn't have lymes but I'm starting to worry about my husband. He has been getting rashes showing up all over his body for the last 4 months. Also gets dizzy. I forgot to talk to the LLMD about him but will mention next time.

    We built a cottage and my husband and I were working together clearing the logs and brush in the woods when this first started. He got a bad case of poison ivy and I got this extending red rash on my right trunk. That's when all my symptoms first started. Everything in my head. Blacking out vision, sinus, head pressure, inner ear, etc. I never had the pain until 1 year after.

    This LLMD comes highly recommended, apparently seeing Canadian lymes patients for years. I think since the 70's. I must be stronger because I didn't even break down crying once through my appointment. Unlike my first FFC visit in June/05. Total emotional wreak.

    So the hormones the FFC put me on and supporting my immune system has really helped. The Denver FFC really got the ball rolling for me and I'm grateful. Dr. Labair mentioned Lymes to me right away at my June FFC appointment. It was the first time I even heard of lymes. She was suspicious of lymes with my symptoms and the circumstance.

    I hope to continue with both doctors this way I'm covering all angles.


  9. victoria

    victoria New Member

    I don't doubt for a moment I have lyme or other associated disease, just haven't had the $$ to get test, altho my son has active/chronic...

    Did you find tho that the pressure occasionally went away without any rhyme or reason for a week or day or whatever...?
    That's what happens to me, it doesn't make any sense to me.

    Thanks, I really appreciate your answer to this!

    all the best,

  10. victoria

    victoria New Member

    Thanks... that is interesting that when you had a cold the pressure was gone!

    well, we all know ALL too well that all our symptoms- no matter what they're due to- can have variations...

    right now I don't have any surefire ways of taking care of it, altho different things have worked for a while, like steaming, using neti pot, even made a solution of MSM into nasal spray which worked the best for 3 whole months!

    My son had Quest also do the testing, but I saw printed on the bottom of the lab sheets 'Igenex', so I suspect they send it to them actually? - don't really know.

    I was also just re-reading about how, since there are about 100 different strains of Bb in USA and not enough research/testing has been done, 'other' types may not show up... which is what makes me hesitant to spend the money as it is out of pocket.

    Thanks, it IS miserable, I've been watching my son suffer thru it and also experiencing my own herxes while on the marrshall protocol, altho my DH is pressuring me to do the same treatment as my son...

    I'm just rather scared of the large dose abx, besides the fact I have experienced herxing and getting better on the MP so I believe it is working -- it's just that 'life' has gotten in my way of proceeding on it.

    Thanks again, no doubt we'll be talking again... I was really blown away since you were the first I've read that had the same basic unexplainable sinus problems as my own and that it was linked to Lyme!

    all the best,

    PS: didn't mean to sort of 'hijack' this thread, altho it does all have to do with Lyme...[This Message was Edited on 02/07/2006]
  11. pawprints

    pawprints New Member

    If the pressure is just on one side of the face would this qualify? Mine runs from my sinuses into my teeth but only on the left side. My CAT scan done by the ENT showed an infection in the back of my head but on the other side. He gave me 10 days of Levaquin and sent me on my way saying the rest was allergies. The Levaquin made my hand and wrists swell.

    Wishing everyone the best in their treatment progession.[This Message was Edited on 02/07/2006]
  12. victoria

    victoria New Member

    it is mostly always on my right side, but when it is really really bad it will cause all my upper teeth to ache, both sides... have had c-scans & exams while having pain, but no infection for me at least.

    I've only had one actual sinus infection in past 10 years... that time it caused a tooth to throb since my molar roots extend just into the sinuses on both sides :((

    - but there's an obvious difference for me between the usual awful pain and that of an infection -- one throbs, the other doesn't...

    altho again that could be different for others, I would think.

    all the best,

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