Discussion in 'Fibromyalgia Main Forum' started by lilbird, Dec 11, 2005.

  1. lilbird

    lilbird New Member

    Hey Cindy,
    How are you doing? I have a question for you. I know that your reverse T3 was really high when you first started at the FFC. I think I read a post of yours not to long ago that it had come down. What are you taking in regards to thyroid meds?

    I just had mine retested and its still high, in the 270 range. I have been on T3 for about 6 months.

    Also had a phone appointment with with my Dr. at the FFC. Things didn't go very well. I was really disapointed as he told me he wouldn't give me ABX with out a positive Lyme test. I was under the impression he would after I had been on the Cumada and Samento for a while. So I asked to test for Lyme through Igenex and he won't. I also talked to him about coinfections with Lyme and he didn't know what I was talking about. So I have decided to see a LLMD in my area. It seems so odd that your Dr. in Denver would use Igenex in California and my Dr. in Caifornia won't. Go figure.

    I hope things are good with you.

  2. lilbird

    lilbird New Member

    for Cindy
  3. pumpkinpatch

    pumpkinpatch New Member

    Wow! I can't believe that since I had the exact opposite experience. Dr. Labair told me 2 weeks ago that I will be on long-term antibiotics!

    She recommended the Igenex for lymes and the 2 co-infections right away the first visit. Said she was almost positive with my symptoms that I had chronic lymes.

    I'm also implementing the cumanda and burbur this week along with the antibiotics I've been on since July. She also recommended xanax to help fight anxiety. Starting that this week also.

    My Reverse T3 was retested in Sept. and I had gone down from 501 to 130 which was remarkable. I'm now coasting with the 25 mcg. per day T3. That seems to be the right dose for me.

    I was under the impression that these clinics use the same protocols. You need to be on antibiotics to get better. It's the only thing bringing me around along with the amantadine and everything else.

    Good that you've decided to see a LLMD. They will be able to help. I can understand your disappointment. It's everything combined that is going to bring us around and time.


  4. karatelady52

    karatelady52 New Member

    Can I butt in here? Did your doctor say WHY he
    wouldn't use Igenex? This doesn't even sound like a
    doctor from FFC.

    I'm sorry you had this experience and it sounds like you will be better off going to an LLMD. I'm so glad you have one in your area. There isn't one in our state (Georgia)but our FFC in Atlanta has been so great with the lyme protocol I doubt I'd go to one at this point.

    I think I'll mention this to them when I go in tomorrow.

  5. laura81655

    laura81655 New Member

    Lilbird and Cindy, sure hope you don't mind me butting in here too.
    There are the Fibromyalgia and Fatigue Centers and also Hormone and Longevity Center which the one in Torrance is.
    I think this makes a difference on how those of us with FM and maybe Lyme are treated, just my opinion here--
    Cathy, sure hope you can get some results by switching to the LLMD.

  6. pumpkinpatch

    pumpkinpatch New Member

    Were you tested for mycoplasma pneu. or chlamydia pneumoniae?

    I tested positive and they can really wreak havoc and one needs long-term antibiotics.

    They basically poison the cells and cut off the oxygen and no nutrients can get in. One needs to take the 3 combination antibiotics. This is the same treatment plan for lymes.

    Also I've gotten really serious about NO SUGAR and started eating lots of plain yogurt as it contains natural acidophilus. Seems to really be helping with the yeast along with the capsules.

  7. lilbird

    lilbird New Member

    Sandy, He just said that if I tested Neg through Labcorp I would probably test Neg through Igenex. He said that is what he has seen in his experence. I have heard just the opposite.

    Laura, you may be right. After talking with him in depth about the Lyme, I was under the impression I knew more than him.

    Cindy, I have to tell you that I started breaking out in a red itchy rash. I had a feeling it was one of my meds so I did a test by going off each one, one at a time and found that it was the T3 that was causing it. Dr. Whightman at the FFC called a perscribion of Armour. So I'm now taking pig hormone thyroid med. I hope it works better for me.
    I was tested for Mycoplasma Pneu. I am positive, he put me on Cipro for a month. It didn't seem long enough to me. I have been on Cumanda, samento and burbur for about 4 months. I have herxed on it so I know it has done something.


  8. pumpkinpatch

    pumpkinpatch New Member

    From what I've read it takes 6 months to 1 year to combat chlamydia pneu, definitely not 1 month. That does nothing.

    You need more then herbs. I'm so surprised because my doctor says the opposite.

    I take 3 doxy and 1 biaxin per day and 2 amantadine and the third week I add flagl. It seems to be doing the trick. Just takes time and steady every day. Last week I had way more pain better this week. The lymes cycle so it makes sense.

    Is this the FFC listed on the fibro and fatigue site? Is the doctor listed in the bios?


  9. karatelady52

    karatelady52 New Member

    So is this a Fibromyalgia and Fatigue Center or is it a Hormone and Longevity Center like Laura said?

  10. pawprints

    pawprints New Member

    I guess that was my feeling as well...I thought all the centers followed similiar protocals. But having been to the one in Ft. Worth, I don't think that is the case.

    In my case, the testing was the same with Igenex, but no antibiotics were prescribed for either the Mycoplasma or the Lyme.

  11. karatelady52

    karatelady52 New Member

    I've heard (and won't say where) that your doc in Ft. Worth is a little strange. I also heard he and his whole family have lyme so the question is, are they getting well?

  12. lilbird

    lilbird New Member

    Shana did you have a positive Lyme test?

  13. lilbird

    lilbird New Member

    They claim to be both Fibro and Fatigue Center as well as hromone longevity center. I'm a little confused now because I thought they were all the same.

  14. pawprints

    pawprints New Member

    I tested positive to the Lyme antibodies, plus was given a positive diagnosis based on clinical symptoms and low natural killer cell activity.

    I do not know if they are better, but he is working full time. If they do have Lyme, he certainly has every reason to know the best treatments out there.

    Perhaps someone else who goes to the Ft. Worth center might have more information they could share with us.

    [This Message was Edited on 12/13/2005]

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