Seattle FFC Appointment & Update

Discussion in 'Fibromyalgia Main Forum' started by hopeful4, Oct 20, 2005.

  1. hopeful4

    hopeful4 New Member

    Just wanted to give you all an update on my progress, and bring you hope for your own recoveries.

    Some of you may remember that I started my treatment at the Cleveland FFC in March. It's my hometown and I had relatives to stay with. Now that Seattle FFC is opened, I've switched my care to there, and had a phone consult with Dr. Marti yesterday. She's just great! I felt so comfortable talking to her, and so confident that she will be able to help me.

    Over the summer I spent 3 difficult and miserable months on flucanazole for candida. You can check past posts if interested. Suffice to say I was incapacitated, lost weight, became weakened, and am having difficulty regaining what strength I may have had.

    Here are my candida lab results, in May, and in Sept:
    Igg - May 1.93; Sept. 1.94
    Iga - May 1.98; Sept. 1.85 (not normal but improved)
    Igm - May 2.16; Sept. 1.77 (improved)
    Overall, not stellar results, but moving in a direction.

    Other reasons I'm not feeling improvement:
    My hormones are very, very low. Low T3, testosterone, cortisol, estrogen, progesterone, and nearly undetectable pregnenolone.

    I'm going to stick with the T3 37.5 mcg. A higher dosage causes a reaction. I stopped the testosterone and cortisol earlier, also due to reaction. I cannot take estrogen or progesterone or pregnenolone due to having had ER+/PR+ breast cancer. I take tamoxifen for breast cancer prevention, which is an anti-estrogen, so that does cause additional issues.

    My labs showed borderline results of 1.09 on my mycoplasma pneumonia Igg. Now Dr. Marti would like to treat for this. She says that mycoplasma plays a role in Gulf War Syndrome, also.

    She also wants me to do the Igenics test for Lymes. The regular Quest test was negative. She wants me to test for Lymes and treat the mycoplasma because I'm still having difficulty feeling better.

    So I'll be on doxycyclin for the mycoplasma; nystatin and jarrowdophilus for the yeast; and artemisin (an herb) which is an anti-bacterial, anti-fungal, and anti-cancer.

    I also started on a trial of Provigil. At first, I resisted because I really do not like pharmaceuticals, and I thought this was a stimulant, so I was concerned about side-effects long-term. Dr. Marti explained that the Provigil is a bridge, to help me get through a period of time, until the other treatments, which take time to work and balance me out, become effective. I have very bad brain-fog and fatigue, so this should be of help. She said it works by increasing dopamine in the frontal lobes of the brain, helping concentration.

    I asked her about a problem I've developed in the last couple of months with extreme light sensitivity in stores. I have to wear a big, floppy hat to cut out the glare, and look down, and move quick and get out! She said that this light sensitivity could be related to Lymes and neurotoxins.

    Did I get my $165-moneys worth for this call? You betcha!! Is the fact that I'm not feeling better YET stumping Dr. Marti ( or previously Dr. Juguilon)---NO. They have reviewed my chart, my file, my labs. They listen to my input, observations, questions. They understand the layers upon layers, and the overlapping interactions of this syndrome. They continue to take it to the next level, and to encourage me along the way.

    Wishing all recovery, health, healing.
    Hopeful4


  2. ldbgcoleman

    ldbgcoleman New Member

    So glad to hear Dr MArti is working out for you. I was so lucky to be on the short end of the getting better scale 4 months or so. Even then I was impatient and had my dobts and bad moments. I takes tremendous strenght and dedication to do what you are doing! I know they will not stop until they get the right combination working for you. Please take Care! Lynn
  3. pumpkinpatch

    pumpkinpatch New Member

    Sounds like your appointment went well and your covering every angle. It takes alot of guggling and revamping along the way!

    I've been on estrogen, progesterone, dhea, progesterone and T3 since June and am definitely seeing improvements on those fronts.

    My night sweats and hot flashes have completely stopped and I'm not crying on a dime and I seem to have more energy. Now if I could just zap the pain.

    Good idea to test for lymes. Mine was IND slightly positive through Igenex and I also have chylamdia pneu. so we are treating both with antibiotics. I just read Victoria's post about a lady in her support group who just completed 2 months of abx and is starting to feel better (lymes).

    I bet your glad your candida levels are improving. Good for you!

    Cindy

  4. rileyearl

    rileyearl New Member

    We're neighbors! I live in Renton and have also been seeing Dr. Marti. I just started 8/31, so I'm still in the try it and see if you can tolerate it stage.

    I'm sorry you've had to deal with so much besides the fm.

    I can relate to the light sensitivity, before I quit my day job about 18 months ago, I would either have to wear dark glasses or go work in an office with the lights off. Sounds really got to me, too. My co-workers were mad at me until the day I quit for getting the Musak speaker above my desk covered up. Both light and sounds trigger migraines for me. My son (age 4) is very confused when I tell him not to flip the lights on and off. He just has to accept the fact that mommy is a weirdo.

    I am taking 4 different hormones right now. Was on Cytomel for T3, but it was causing swelling, so I stopped that for now. My thyroid was only a little low. I start the antibiotics and antivirals in November. I guess the first month is kind of rough, but I'm hoping the IVs and pills will chase away the mycoplasma and chlamydia pneumonia and the ebv. Will also be on gamma globulin shots for a puny immune system.

    Sleep study scheduled for the end of the month because I only sleep 2-4 hours at night.

    Maybe we'll feel good enough one of these days to meet in person! Musica and I keep talking about it, but the energy and pain-free hours just aren't happening yet.

    I'm glad you're seeing Dr. Marti. I think she's just wonderful. I can't believe she's running that operation as the only doctor and mom to a 7 month old baby. Wait, I remember being in my 20s and very early 30s and having energy to burn. That must be her secret!

    I wish you well, well, well!

    Francie
  5. browneyes259

    browneyes259 New Member

    ....even though it is slow sometimes. Keep your chin up. You will be in my thoughts and prayers for a speedier recovery from the many aspects of this DD.

    Hugs,
    Jen
  6. hopeful4

    hopeful4 New Member

    Thank you everyone for your encouragement and for sharing your information. Your voices are like the cheering section at the football game. Truly, I had been feeling lost and wondering why I have not been feeling better YET. But since my appointment with Dr. Marti this week, I see that it's not over yet, there's more work to do!

    I started the Provigil yesterday, only 50 mg, and I could already feel it making a difference. If it will improve my quality of life while working on all of this other stuff, that would be great!

    Today I started the Nystatin (for candida) and the Doxycycline (for mycoplasma). Tomorrow I'll add the Artimisin. From what I'm reading it seems that some people do feel worse first, but that also, some people start to feel better rather soon. I'll take it a day at a time.

    Hugs to all,
    Hopeful4
  7. laura81655

    laura81655 New Member

    Thanks for posting your update. I'm glad to hear that the Provigil may help you with the fatigue and brain fog. Sounds like you have really struggled with fighting the Candida, although you are making some progress.
    Wishing you continued success!

    Laura
  8. Empower

    Empower New Member

    Curious as to how the Provigil is working for you

    My doctor has prescribed it, but I am afraid to try it, even though I really want to

    I am extremely sensitive to meds
  9. hopeful4

    hopeful4 New Member

    I can understand your reluctance to try it with your sensitivities. I've also had some reactions to meds and supplements. All I can say is that I've only been on it for 3 days! The tablet is 200 mg and I cut it into quarters with a pill-cutter (got it at Target).

    The first day I did notice improvement with less fatigue. But yesterday and today, not as much. However I also just started the Nystatin and Doxycyclin yesterday. So maybe I'll have to try 1/2 a tab.

    For you, I would suggest that if you want to try it, just try a smaller amount to see if it helps you and whether or not you have a reaction. Go slow and be aware of how it effects you, if you think you can.

    Take care,
    Hopeful4
  10. ldbgcoleman

    ldbgcoleman New Member

    The Doxy and the FAmvir made me feel bad for about 5 days or so then I had great improvement. Be very careful in the sun. I had a huge reaction and have had to stay out of the sun put on tons of sunblock ect.. Lynn
  11. hopeful4

    hopeful4 New Member

    Thank you Lynn for your info on what to be aware of. Yesterday I upped the Provigil to 100 mg. which seemed to help. So far not noticing anything from the Doxycyclin, Nystatin and Artemisin...but remaining aware!

    I've also started reading up more on Lymes, and neurotoxins, which previously I'd done more of a breeze through on. I feel like I'm digesting the reality of the many layers of this illness, and the ricochet effect of one problem on the next, like candida and its effect on thyroid function (among other things); and Lymes and the neurotoxins.

    These complexeties make treating this illness so difficult, like which do you treat first, the chicken or the egg? That is why at this time I feel confident in the approach of the FFC, addressing all aspects not just symptoms.

    So glad you are doing well, take care,
    Hopeful4