CINDYCOR Update- Denver FFC

Discussion in 'Fibromyalgia Main Forum' started by pumpkinpatch, Sep 22, 2005.

  1. pumpkinpatch

    pumpkinpatch New Member

    Just had my 4th appointment today via phone.

    Good news is my hormonal levels are really improving. I've been on DHEA, estrogen patch, progesterone, and pregnenolone.

    My thyroid T3 and Reverse T3 improved significally. Reverse T3 went from 501 down to 137 thanks to the Compound T3 which I've been on since June.

    Now we have to concentrate on the infections. I tested positive for Candida, antibodies for EBV and chlamydia pneumoniae.

    I'm also being treated for lymes and have been on doxycycline, biaxin and cysts medication. I had to drop back down to doxy only since I was herxing really bad and did not want to be bedridden. Will slowly reintroduce the other 2.

    I'm to stay on the dyflucan, antibiotics, replace trazadone with baclofen at bedtime for my extra stiff muscles, pain med, hormones, T3, supplements and vitamins and aciphollus. I've decided to add garlic to my regimen. It seems to be good for antibacterial and antiviral.

    Hope I didn't miss anything. Will add if I remember.

    Cindy


    [This Message was Edited on 09/22/2005]
  2. laura81655

    laura81655 New Member

    It's encouraging to read your post. I have my first appointment 9/29 at the Los Angeles FFC. I sure hope to get some answers and also some relief from the FM pain.

    It sounds like you have been through and our still going through alot with the Lymes. I'm almost certain I don't have that. I would love to know if the Baclofen helps with your pain, one I have not tried yet!

    I read your bio--my two sons are 28 and 21. I hope they are a help to you as mine are!

    Wishing you continued success!
    -Laura
  3. pumpkinpatch

    pumpkinpatch New Member

    Yes Laura you will get some answers. They know exactly what to test for and treat according to what they find.

    Hormonal levels, thyroid, immune dysfunction and bacterial and viral infections are the areas they concentrate on.

    It's not a quick fix but at least we have a game plan.

    Yes we have 3 sons. They are the greatest. Hard to keep up with them at times! Especially the 13 year old. He's got me going to all the pet shops looking at dogs now!! We have a little cockatiel and he's definitely mommy's companion.

    Let us know how your appointment goes. They are very compassionate.

    Cindy
  4. rileyearl

    rileyearl New Member

    Hi Cindy,

    Thanks for the report! I went to the Seattle FFC yesterday for visit 2 and went through the blood results. My main issues are hormones, too. I'm feeling really good about the thoroughness of the treatment and the direction we're going.

    Was your 4th appt at 6 months? I think that's when Dr. Marti told me we would check blood again.

    I'm going to post my experience yesterday in detail, as soon as a certain 4 year old falls asleep.

    Thanks again!

    Francie
  5. pumpkinpatch

    pumpkinpatch New Member

    Started at the Denver FFC June 10. Today was 4th appointment.
    I schedule them every 6 weeks.
    Your son is a cutie pie!!

    Cindy
  6. lilbird

    lilbird New Member

    I just logged on to send you a post and see how you were feeling. Hopefully cuting back on the ABX will help you.
    I'm glad to see your hormone levels are improving.

    Just keep plugging away and one day we will start to feel better. I am sure of it.

    I leaving to go camping and fishing for a few days so I will check in when I get back.

    Take care,
    Cathy
  7. rileyearl

    rileyearl New Member

    Thanks for the detail on my Seattle post. I have a couple of questions for you, if you feel good enough to field them.

    First one is do you feel better than when you started in June? Are you able to get out and so some things? I've pretty much been stuck in the house because I get so tired--can't drive and if someone drives me to a store, I'm too tired to shop by the time I walk from the parking lot.

    Second, did you have any idea that you had the candida, ebv and lyme before you were tested? Are there symptoms you recognized before? I really don't want to have viruses--I'm sure everyone else feels the same.

    Is the T3 giving you energy? Any weight loss? I've gained so much weight that I would love to shed lots of pounds.

    Last one! Have you had to make drastic changes to your diet? Are you doing the strict candida diet?

    Thanks in advance for your help! And if you don't feel good enough to put any energy here, that's ok, too.

    Francie
  8. pumpkinpatch

    pumpkinpatch New Member

    When I started in June at the FFC I had no idea that I had all these problems.

    I definitely have more energy and yes I'm getting out. Just got back from the grocery store.

    balancing my hormones made a big difference. I still have the pain and fuzzy vision but I'm sure that's from the infections.

    I don't have a weight problem. Sometimes I have to force myself to eat but my appetite is improving. I'm also drinking plenty of water with lemon. Helping with the nausea from the antibiotics. Now that I know I have candida will have to watch the sugar. I'm taking dyflucan and lots of accillphus (sp).

    I'm glad they concentrated on the hormones and improving my immune system so I can fight all these infections. It will take some time. I know that with clamydia you need up to 6 months on doxycycline.

    Apparently with lymes formerly latent viruses are reactivated because the environment is so crappy.

    When do you get the infectious panel results back? Did they test for Lymes.

    Nice that we can work compare and support each other. Is that son of yours a busy guy? He's so cute. There is a photo of my sons on my profile. They are great.

    Cindy

    [This Message was Edited on 09/25/2005]
  9. rileyearl

    rileyearl New Member

    Yes, my son is a wild thing at 4. We skated through 2 and 3, but he's making up for it now! My mother says the tail wags the dog at our house and she's right!

    I'll get my test results back on Oct 12 and will look forward to talking about them with you. It's so great to know we're not trying to do this all alone.

    Talk to you soon!

    Francie
  10. rileyearl

    rileyearl New Member

    Your boys are just gorgeous! And I'm glad about Willie making a comeback!

    F
  11. bpmwriter

    bpmwriter New Member


    glad to hear you got that reverse t3 down! it's the small victories.

    maybe you have some insight - one thing i don't understand about the hormone supplementation is how they determine if your body has taken over and can make the hormones on its own? did they instruct you to keep taking the hormones? lower your dose? will they take you off eventually and test again to see if they return to pre-treatment levels??

    eddie
  12. ldbgcoleman

    ldbgcoleman New Member

    So happy to hear you are headed in the right direction! Isn't it satisfying to get those test results and see some improvement. It makes everything we are doing seem worthwhile. Im just spent a wonderful long weekend in Chicago with my neices. Something I never could have done in April. I am thrilled or you! Take Care Lynn
  13. pumpkinpatch

    pumpkinpatch New Member

    Regarding the hormones I'm to stay on everything and since my Reverse T3 has lowered to optional level I'm to stay on the 37.5 mcg. compound. That seems to be the right dose for me.

    My gut feeling is once the infections start to clear up I will produce the hormones on my own.

    Dr. Labair said that If I'm having such a hard time (herxing) with the heavy antibiotics work my way up slowing. She said if I'm flat out I'll get depressed and that won't help.

    Eddie have you made any decisions about your care at the clinic. I really think once our systems start working together we'll feel better it just takes time and everyone is different.

    Thank you Lynn for all your encouragement, you've been a great support and trooper since the start! Enjoy your long weekend. How are the house plans going? We've decided to move out of our rented condo and into a 4 bdrm. house. Move in Dec. 1. Just need more room.

    Cindy


    [This Message was Edited on 09/26/2005]
  14. kbak

    kbak Member

    Sounds really good! Happy for you!
  15. bpmwriter

    bpmwriter New Member

    cindy,

    i haven't made any concrete decisions yet on whether or not to continue treatment. at some point before the end of the year, i will likely set up an appointment to have some follow-up blood work done. just a couple days ago, i had a terrible migraine with some severe anxiety too. dr. b had recently upped my cortisol dose which made me really wired so i stopped taking my 5-http (for serotonin) thinking that might be contributing to the wired feeling. well, cortisol blocks serotonin production so that combined with the extra cortisol is what (i think) caused this terrible episode; my migraines are historically linked to a serotonin problem.
    i really wish they had some better ideas than cortisol for treating the underlying cause of muscle pain. supposedly, it facilitates tissue repair, but i believe our muscle pain problems are nerve-related. i guess i think i know more than the docs sometimes!, but like you said, we're all different and need to stay in touch with our bodies as much as possible.

    stay positive! i hope you keep improving!

    eddie