Discussion in 'Fibromyalgia Main Forum' started by lilbird, Jan 25, 2006.

  1. lilbird

    lilbird New Member

    Hi, How are you? I hope your doing well. I have had a few good weeks. I have spent my time catching up on all the stuff that falls behind when I'm not feeling well.

    I broke down and started taking Ambien. I think it has helped to be able to sleep and may be why I am feeling better.

    I started seeing a LLMD. I had my first appointment last week. I did blood work yesterday. We are testing for Lyme and all the coinfections through Igenex. Also doing some gene testing to see if I am suseptable to Lyme, mold and a couple of other things. The gene testing is Richie Shoemakers protocol. He wrote a new book called Mold Warriors. It has some really good info in it.

    My new Dr. does think I have a mold issue to deal with. He has me on a nose spray to kill mold. He also thinks that mercury is a problem for me and has me taking a suppliment to help rid me of it.

    Hope you get this


  2. LdyM

    LdyM New Member

    Hi Cathy, I know you live in Sonoma Co. and I have family up there. May I ask who your new LLMD is? And are you also still with FFC in Torrance?

    Thanks, **LdyM
  3. darude

    darude New Member

    Can I ask you what is the nasal spray you use for mold.

  4. 69mach1

    69mach1 New Member

    i live in novato, marin county....

    i am curious what is your doctor's name? are they an m.d.?

    i currently have kiaser, but i need to start looking elswhere...

    i worked as a regisered dental assistant for 11 years...anwyas i had problems around the office, i was wheezing like may have been the mercury i had to squeeze in a cloth everyday...and when he would be preping the teeth that had amalgam in the i would be weezing...

    just curious as to who you are seeing and what city do you live....

    thank you so much

  5. doxygirl

    doxygirl New Member

    I too am curious to know what the nose spray to kill mold is called?????

    Please let us know !
  6. pumpkinpatch

    pumpkinpatch New Member

    I've been wondering how you were doing. Glad you made that appointment with the LLMD.

    I'm still following the FFC recommendations and seem to only tolerate 1/2 the doxycycline. I also am going to see a LLMD Feb. 4, 8 hr. drive. Want that second opinion from a specialist. He wants me to fax all my blood work to him.

    Good idea about the sleep med. I realized this morning that I wake up during the night because my husband gets up at 3 a.m. to go to the couch then back in the room at 5:30 a.m. to get ready for work. This really disrupts my sleep and I'm already a light sleeper. I'm thinking if I go sleep in the spare bedroom with a fan on I won't hear anything.

    The FFC has sent me the heavy metal test kit and I'm going to take that then send to the lab.

    I just recently received more Transfer Factor bottles, started ProBoost and am trying the Threelac. Also I've been concentrating on my digestion as I don't think I was absorbing all those supplements. Got to get this yeast under control. I guess with the antibiotics we are more prone to candida. Someone on the lymes website mentioned BIO K.

    I seem to have more energy but pain is still there. Also my hormonal levels have improved and I'm waiting on my T3 in the mail. Notice a big difference without the T3.


    [This Message was Edited on 01/26/2006]
  7. jane32

    jane32 New Member

    I finally got my T3. I felt like I had to fight to get a lower dose they need a better system so we don't run out!

    I wanted to tell you that I read your post and sleeping with a fan has helped me SOOOOO much. I actually sleep with too and now I can't sleep without them. Mine is by honeywell. You can find then online. They ahve a nice wind blowing noise. I put one on the floor by the door and one by me. I love them. It drowns everything out even footsteps and the phone.
  8. lilbird

    lilbird New Member

    Jodie- With all the polical problems going on with LLMD I would fee better if we could go to the chat room and I could give you a few names in the bay area. Let me know and we can set up a time. The Dr. I am seeing is DA. But he has been treating Lyme for a long time. He also is very good with the mercury stuff.

    Do you have Lyme or been tested?

    Doxy- The nose spray is Ketoconazole. I guess its a pill and a compounding pharmacy in my area breaks up the pill and puts it in spray form.

    LdyM- I have not offically stopped using the FFC in Torrance but I have not made anymore appointments and I don't think that I will be. I was very happy with them in the begaining of my treatment but have grown discuraged with them. I have not had a positive lyme test and they would not test through Igenex. Because I haven't tested positive they would not treat me with ABX. I also talked with my Dr. there about testing for coinfection to lyme and he didn't know what I was talking about.

    Where are you from?

    Cindy-I know how it is, my husband gets up at 1:30 to go to work and I was always waking up and not able to get back to sleep. Now that I am taking the Ambien I hardly ever wake up and if I do I go right back to sleep. Its wonderful. I don't like the idea of taking more meds but I know I will get better faster if I am sleeping well.

    I think its a good idea to get a second opinion. There are so many idea's about how to treat lyme that its a good idea to talk with someone else.

    Stay in touch.

  9. 69mach1

    69mach1 New Member

    i don't know if i have lymes or if i have even been tested for i have kaiser>>>

    tell me what day and time would be good for you to chat...?

    i was thinking sunday sometime...evening, late afternoon...
    it car really be when ever...

  10. lilbird

    lilbird New Member

    Sun should work for me. lets say 4:00. I will make my self a note, a big note and put it where I will see it.
  11. 69mach1

    69mach1 New Member

    sudnay at 4! i'll put it on my claendar...


    just thought maybe sunday would be good day because of kids and stuff

    thank you

  12. LdyM

    LdyM New Member

    I appreciate the FFC information. I too am becoming disenchanted with them.

    I live in Los Angeles, but could get treated in No. CA because family is in Sonoma Co. and I would have a place to stay if I chose.

    Will you say who the Lyme Literate doctor is you are seeing? Also, what is a DA?

    Thank you Cathy, **LdyM
  13. toronto133

    toronto133 New Member

    Since I had some positive bands for Lyme via the Quest test - I am going to a LLMD in Toronto in February.

    I can draw some assumptions that you will be seeing Dr. M. in B.C. He certainly has a great reputation so I hope you find some further answers there.

  14. darude

    darude New Member

    Did you get your Xanax and is it helping you?
  15. lilbird

    lilbird New Member

    I;m meeting Jodi in the chat room on Sun. at 4:00. Do you want to meet us there? I have a few names of Dr. in the Bay Area. What are you looking for. do you have Lyme? Othere issues? do you want a Dr. that is more alternitive, more convintional or a combo?

    DA is Doctor Assistant.

  16. LdyM

    LdyM New Member

    Yes, I'm interested in a Sonoma County Lyme Literate doctor. I may live there in the future. Your DA sounds like what I am looking for.

    I am going to ask Kent Holtorf for the Ingenex tests when I see him this Thursday, as I am not improving after eight months on the five hormones, three months on Kutapressin and two months on Heparin, plus many, many supplements and herbs, etc.

    If it's Lyme or mycoplasma infection that's the problem I want to find out now. I'm running out of money. Like Jodie, I only have Kaiser insurance and the FFC has cost $5,000 thus far, although he does his best to work with me on this.

    I have been disabled with CFIDS since 1994. I do not have FM. I am also in the process of having my amalgums replaced. Seems PWFM have more success with the FFCs.

    Thanks Cathy, I'll see you and Jodie in the chat room at 4:00p.m. on Sunday!

    [This Message was Edited on 01/27/2006]
  17. LdyM

    LdyM New Member

  18. lilbird

    lilbird New Member

    Dr. Whiteman at the ffc tested me through Labcorp and would not test me through Igenex. I will be interested to see what Dr. H tells you. Also when I talked to Dr. Whightman about co-inffections to lyme he didn't know what I was talking about. That is when they lost me. I too wanted a Igenex test for the same reason as you, it is the lab of choice for LLMD's.
  19. LdyM

    LdyM New Member

    Yes, I'll let you know what Dr. Holtorf says when I speak to him on Thursday.

    'Till Sunday then.. **LdyM

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