Cleveland FFC - October Postings

Discussion in 'Fibromyalgia Main Forum' started by wishingonastar, Oct 9, 2005.

  1. wishingonastar

    wishingonastar New Member

    Hi Everyone!

    How are you doing! I haven't been on the boards for awhile because I've been doing so well. I'm back to working full-time and raising my daughter full-time and loving every minute of it!

    I return to Dr. J. on the 28th of this month for additional bloodwork on the stubborn EBV and Yeast Infection.

    The ProBoost I started almost 3 months ago has made a terrific difference for me!

    In the last month, I've traveled to Phoenix for training (which I couldn't have done 3 months ago!) and am back to giving trainings and being much more "on" at work. What a difference from a year ago when I was just beginning to go back to work 2 hours a day, three days a week...with little more that the capacity to sit there.

    I hope you are all doing well! I would love to hear how you're progressing and any troubles you're having.

    Blessings to all of you,

    Patsy
  2. bpmwriter

    bpmwriter New Member


    it's encouraging to hear that you've gotten your life back. goood for you! to what do you attribute your success against the ebv? transfer factor? an anti-viral?? i keep trying to figure out where my ffc experience went so wrong. i was doing good for the first 2 months then everything went haywire; i've been sick since against the beginning of august. my infectious panel revealed ebv to be the main culprit. so many others have multiple infections and seem to be getting better while i've just gotten worse. major relapse here.

    eddie
  3. acesk

    acesk New Member

    What went wrong? Did they put you on an anti-viral? The reason I ask is that I went to FCC and follow up with phone - no help so far with pain, energy better. They want me to now do antiviral med for Epstein Barr. Afraid to do it - cannot see how it will help pain. Let me know what went wrong, ok???

    Thanks.
    Sue in Florida
  4. ldbgcoleman

    ldbgcoleman New Member

    Patsy-Thank you so much for posting! I have been wondering how you have been doing. I also am doing things I had lost hope of doing. It is wonderful and I am hoping for even more! Your posts encouraged me and I really appreciate it!

    Eddie-It took me a good 4 months to really feel better. I had points where I got so discouraged becaus I was doing everythinmg they told me too. The Candida Diet, Heperin injections, Iv's and all the supplements and prescriptions as well as starting a very light walking program. I could see some subtle changes but had many peiods where I felt worse and questioned what I was doing. I cried and swhined alot!

    I committed myself to doing it all for 6 months and with my husbands encouragement I just hung in there somehow. I think you need to give it a longer chance to work and do exactly what they ask you to if that is possible. When I have talked with them about success rates I have gotten the same answer from everyone from Freda to Brenda to Dr B and Deborah and Kia. They see the best success from people who follow the program.

    You may just be getting worse before you get better. I hope you will consider sticking with it!

    Sue- Sue please do the Antiviral for EBV. That has made all the difference with me. My pain has dramatically lessoned, I have energy. I am riding horses, I am taking Salsa lessons, I took my neices to Chicago, I am going to the GA FLA game for the first time in 5 years. I really started to turn the corner When I started the antibiotics. They made me feel worse for a while and then I just started to improve.

    These DD's are so complicated and every case is different. It take differnt approaches for different people and some recover faster than others. The alternative is mor of the same. Committ yourself and try not to doubt what you are doing.

    Please ask me if you have any questions!!

    Take Care everyone and again Patty so happy for you! Lynn

  5. LISALOO

    LISALOO New Member

    Scheduled for phone tomorrow, however, have not received infectious panel taken after second appointment, so might delay this appointment until i receive the results.

    No changes in my symptoms yet, feeling a little worse, but new to program still. Plus I had an awful cold right after I started and I had problems with the tyroid medicine.
  6. hopeful4

    hopeful4 New Member

    So good to hear from you Patsy, and to know that you are leading the way in living your life well. We are all just right behind you!

    So far, I have to say, I am not feeling better...YET. Dr. J. says that in my case it could take a year before feeling better. Most notable improvement is that I am sleeping better. I used Peaceful Nights for quite awhile, but have recently switched to something from my acupuncturist, which is even better for me called Schizandra Dreams by Health Concerns.

    Other notable improvements occurred when I took the Oxidative IV (twice, I live in another state) which greatly improved my physical energy, mental functioning, and eliminated all the pain. No small feat. However, the effect wears off within 1-2 weeks or so.

    The most difficult period was 3 months of treating candidiasis and the misery of die-off, I was very incapacitated and have become weak, and need to rebuild, having problems with that. I was supposed to have had my post-treatment lab results a couple of weeks ago, but the lab made an error. So I had a second blood draw and should have the results any day now. I really do not want to go back on the flucanazole (generic diflucan), but Dr. J. seems to want me to if I still have the candida.

    I live in WA and the Seattle FFC recently opened. I finally got myself up there last week for an IV. I've been hesitant about switching because I got used to the one in Cleveland, the Dr., the staff, etc. However, now that I've experienced the one in Seattle I will most likely switch to it. The staff, nurse, and doctor were all wonderful. Dr. Marti came into the IV room, introduced herself, assured me that she had consulted with Dr. J that morning about my case and needs, gave me some suggestions, and made me feel very comfortable about being there.

    I got a Superviral IV there, as the Oxidative has been discontinued. It did not give me the quick boost that the Oxidative did, but I do feel slightly better. I think weekly IVs would give better results, but I cannot afford that.

    Wishing you all a beautiful day,
    Hopeful4
  7. Jen102

    Jen102 New Member

    could you please explain exactly what antiviral meds, including any details you can provide for the ebv. I am severely ill with CFS/FMS/MCS. I have improved on glutathione and magnesium iv's and am doing many other things along with. at some point i need to address HHV-6 and EBV. Am interested to know what you did. BTW, I have tried transfer factors. if i take more than about 1/8 of a capsule, i have a night of violent vomitting. no fun. the proboost didn't seem to do anything for me except wear a hole in my billfold. i use bromelain and medicinal mushrooms to limited effect. any advice is appreciated. Jen
  8. ldbgcoleman

    ldbgcoleman New Member

    I am taking doxycyclene for mycoplasma and Famvir for EBV (I think I have it right) I am also taking Miyake mushrooms, NK stem Transfer factor 4000.

    For Hypercoagulation- Heperin and Lumbrokinase
    For Thyroid- Thyroid from a compounding pharmacy
    For Adrenal Fatique- Cortisol
    For Candida and gut health- Nystatin, Garlic and Jarro Dophilus
    For sleep- Ambien and Meletonin

    Also Pregnelone, HGH, Fish Oil, Dr. Teitlebaums From Fatigued to Fantastic and I think that's it

    I feel fortunate I don't have Lymes and I just have the Myco and the EBV to deal with.

    I am not sure what is or isnt
    t working other than the antivirals because I started it all at the same time but it is working so I am sticking with it!! Lynn

    Hopeful4 Sorry it's taking so long! Everyone seems to love Dr Marti! Take CAre!
  9. elsa

    elsa New Member

    I'm not an FFC patient but my doctor(s) are on a very similar track.

    I was quickly (as oppose to the nightmare most go through)diagnosed with CFS/FM and immediately after blood work came in showing mainly EBV, my doctor started me on anti-virals. This all started two years ago.

    I spent the first six months on valtex 1 gram 3xd. He then switched me to famvir ( don't remember the dose right off hand ). I was on famvir for another six months. The switch was to make sure all pathogens where hit - encase they were resistant to valtrex.

    Next he switched me to Transfer Factors Essentials, colostrum and whey protein concentrate. I didn't start the TF's right as he wanted me to because I am a chicken.

    Did this particular stage of treatment for about 6-8 months. I now do the whey shake about 3-4 x wk ... but can do it everyday if I like.

    I also now just pulse the TF's similar to Mikie's protocol. As she and my doctor explained ... There is a strong need for the rx antivirals to beat up on the current infections and reduce numbers.

    Then the TF's teach the body's immune system to stick up for itself against the same pathogens. The whey protein concentrate is for glutithione.

    Neither the valtrex nor famvir were difficult for me to take. I didn't start to feel noticably better until a year into this part of treatment.

    I now feel like my CFS is in remission. It is my fibro that I am dealing with at the moment. The flu like, grab for the thermometer ('cause you just know you have fever of at least 103, lol) feeling I had for so long is gone.

    Pulsing the TF's and keeping immune system strong with whey and colostrum are the last "stage" of my doc's protocol with CFS virus treatment.

    It works .... and from what I can tell, is very similar to what the FFC patients are doing. I think they may be going a little faster then my doctor went with me, but the result is the same.

    It is time consuming, doesn't seem to work, may even make you feel worse ...( I just thought the die off's were flares )and feel like a big waste of money.

    Then, one morning ... months later LOL, you don't have the "flu" anymore. You're not superhuman, but you are better.

    Hope this helps,

    Elsa
  10. Jen102

    Jen102 New Member

    for your experiences with anti-virals. I think this is going to be the next part in my journey and i appreciate learning what you have done to be successful. Thanks again. Jen
  11. wishingonastar

    wishingonastar New Member

    So glad to hear from you all! Lynn, I'm so glad to hear of your progress, you are doing wonderfully!

    For those that asked, I am taking 1.5 grams of Valtrex three times per day. I also take Transfer Factor 4000 - 2 pills twice a day for the EBV.

    I know I am still troubled by the Candida and am taking a myriad of things including diflucan....

    I'm also taking more supplements than I care to count but I know that they are all working to rebuild my immune system.

    I am just delighted that I have lost the brain fog that plagued me for so long.

    I am being very cautious so as to avoid a relapse as best as possible. I'm very excited to see Dr. J. in a few weeks...it's been 2.5 months since I last saw her.

    I agree with what many of you have said about feeling worse in the beginning. Dr. J. originally told me I would feel much improved in 4 months after beginning treatment. While I did feel much improved, it wasn't enough...I wanted to be better than I was before I got sick. I'm still plugging away and have a ways to go, but I feel as good as I did before I got sick...now I want to be better, healthier.

    Hopeful4, hang in there! I'm glad there is an FFC closer to you. It can take such a toll to travel such a distance.

    My very best to each and everyone of you!

    Many Blessings,
    Patsy
  12. bpmwriter

    bpmwriter New Member


    my problems began after my third visit. granted, i had some car trouble in atlanta on a very hot day so the situation was ripe for a flair. but anyway, most of the month of august i experienced flu-like symptoms and a huge rise in histamine levels (ie. lots of sneezing, sinus congestion). i was taking acyclovir 3x a day and one cap of transfer factor. i just can't seem to tolerate any sort of immune-stimulating protocol unless it's extremely gentle (acupuncture works very well for me). so i ended the immune meds and supps end of august, but continued to have problems in september including shortness of breath, which is a brand new symtpom for me. in order to troubleshoot the breathing problem, dr. b. had me stop my T3 and i'm down to an every other day dose of cortisol. so i'm basically back where i started and trying to decide what to do next. earlier this year, i was feeling much improved on a low dose of lexapro and regular acupuncture treatments with chinese herbals as needed, so i may go back to that. i even took a two week trip to puerto rico and did some hiking!

    lynn, much of your success, in addition to your sticking to the protocol so well, is likely due to the regular IVs, yes?
    if i had to do it all over again, i would likely ask dr. b if we could go the all natural route and if i lived closer, i would get regular IVs. i've been told many times that my body is very sensitive, which applies to my personality as well. anti-virals and antibiotics are just really hard for me to tolerate. my personal belief is in the idea of homeostatis (balance) and these hardcore meds simply upset the natural balance of the body too much for me.

    wishing good health to all,
    eddie
  13. TwinMa

    TwinMa New Member

    Thanks to all of you who have posted about the FFC. It has been very helpful!
    Katy
  14. orachel

    orachel New Member

    I'm hoping to be able to start at ffc cleveland in January of 2006 (insurance issues)....so glad to hear its working so effectively for you!!!!

    Congratulations!!!!
    Hugs,
    Rachel
  15. ldbgcoleman

    ldbgcoleman New Member

    Eddie-

    In all honesty I have no idea how much credit to give the Iv's. I'm really not sure what is or isn't working. I feel like we threw everything at the wall and some of it struck. I actually have not had an IV in 6 weeks. I just wanted a little break and never started back. I haven't gone backwards at all.

    I think the tricky thing is there is not a one size fits all here. They may have just hit upon the right combination with me and I could tolerate it. My constitution is pretty strong, bring on the hot sauce. The one thing I do like is if it isn't working for you they will try another approach and not give up. For the people that want a cure I don't think there will every be a magic pill. But maybe a protocal that works will be developed. I think we are guinea pigs but hey this guinea pigs feels better!

    Although I am doing alot of things I have been wanting to do and haven't been able to, I am really being careful to pace myself. I rest every afternoon and if I have a long day I schedule in downtime the next day. I have finally gotten rid of the guilt and given myself permission to relax and let things go. I think this has helped with the stress!

    My friend just started accupuncture for back pain. Bursitus(I think she has heat with it) She has had two treatments. She says it hurts! She can't tell if it is helping yet. She had the same story, Drs throwing pain meds at her.

    By the way I got your book and it is next on top of my pile! Can't wait to read it! You should talk with Orachel and Lollieboo. They have a great idea for a book but may need to be pointed in the right direction to get published!

    Please take care and keep trying different things! Never give up! Lynn

    Wishingonastar! I'm with you I don't want to settle for anything less than the absolute best I can be. I have definantely struggled. The diet is much harder now that I am feeling better and out and about. I get really tired of taking all the supplements every day and the Heperin Injections!! But all in all I feel like one lucky girl!

    Thanks for your post! Lynn
  16. wishingonastar

    wishingonastar New Member

    I do get very tired of taking all the pills every day. My daughter said to me this evening "You take so many pills! How many do you take every day?". I said that I probably take about 30 pills a day but that only two of them are prescriptions and the rest are vitamins and supplements. She said "That sounds so annoying!" --coming from a ten year old! So I said that it is annoying, but that given a choice to be annoyed or healthy, I'll take healthy any day!

    I also wanted to mention that I really notched up my energy levels by beginning ProBoost from the store here, about 2.5 months ago. I know that it works well for some people and doesn't do much for others, but I think it made a big difference for me. Dr. J. says that she doesn't recommend it for people in the initial stages of healing, but that her observation is that it seems to really boost people who are close to getting back to 90-100%. So, for what it's worth!

    Patsy