I'm scared/frustrated (Question for the FFC'ers)

Discussion in 'Fibromyalgia Main Forum' started by jswarren2, Jan 19, 2006.

  1. jswarren2

    jswarren2 New Member

    Hello all,

    I have not posted in some time because for months I was so much better that I was busy working and living a normal life.

    A little background of me.

    I started going to the Atlanta FFC last June. After the test results came back it was found that I had an active EBV infection and Lyme. So I went on all the treatments and had alot of hope. I was told that I would feel worse before I got better so when the herxing started It really didn't bother me.

    I also had to start working again in July which was tough but I had a light at the end of the tunnel. By September I felt a little better. By the end of October I was over 80% of where I used to be, then in November and December I kept getting better. I got a bug twice in the last 6 months but I was over both of them in days and by Christmas I was feeling 100% most days, and not under 70%.

    I was feeling so good that I had forgotten what it felt like to be in pain and missery. That all changed New Years eve!

    I started with the dull headache again and sore throat and drugged feeling. It bothered me because it felt different from the bugs that I have caught recently, still I tried to shrugg it off as a cold. Now it has been almost 3 weeks with no relief. I went back to the FFC today to talk with the doctor and the only thing that I can do is to go back on all the products.

    I stopped taking some of the supplements after I started feeling so much better and that is what the doctor thinks may have caused my relapse. She said that my immune system must have gotten weak again.

    I only got off the pruducts because I could not afford all of them and pay the bills.

    I have not missed a dose of the antibidics or the antiviral that she prescribed.

    I still do not believe this. I was feeling so much better!! I don't understand it. I have been working so much that I feel like a fool now. I mean I started living again for the past 6 months but now for the past 3 weeks I feel worse than I did before I even went to the FFC.

    I have to keep working because I am the bread winner.

    I was so much better!! I have to have faith that this will pass.

    Question, has anyone else had this experience? Feeling around 100% to have it go away over night. If so, was it just a temporary set back? I am concerned.

    Thanks,
    Josh
  2. GBHope

    GBHope New Member

    I am really glad you posted this Josh and I hope you will continue to keep us informed and let us know if you are hopefully pulling out of this setback. I had posed this same question before of how many of the people going to the FFCs were staying well and what they had to do to maintain their wellness. No, I'm not putting down the FFCs. I think it's great they are helping people. The cost of feeling better is a problem for me as well though too. I can't even afford at this point to go the FFCs. I am seeing my chiropractor for nutrition and even he wants to try and charge me a lot because these supplements aren't covered by insurance. I really hope you can pull out of this and get back to your much improved health!!!

    GBHope
  3. danaDoo

    danaDoo New Member

    Dear Josh,

    I sure have I have felt good all day for instance but for about a 2 week stretch i felt terriable Now tonight im back to sick. I don't have lime desease but, have been tested for it. I used to own a home in the mountains and found a dead tick inside of me I thought for sure this would find the answers and get me well. Ive been steady sick for about 4 pluss years now. But, was diagnosed with fibromyalgia 1994. Im sorry you are having a hard time and i hope it passes soon!

    Dana
  4. elsa

    elsa New Member

    I am on a very similar protocol as the FFC's. I am in a pretty good remission ... about 70-80% so I understand about the good being really good.

    Please try and remember that this is a chronic illness with no cure. There are somethings that I will have to be on forever. It's just the way it is. Until a cure for Lymes, CFS/FMS, etc comes down the pike, we will all be on some type of maintainance plan.

    Is it costly to me? Have I given up things because of the cost of staying in remission ... You bet. Do I resent it? ... Sometimes, but it is what it is.

    I hope you feel better soon. I'll keep you and your family in my thoughts.

    Elsa

    PS GBHOPE ... I am really hopeful you get over some of these doubts .... I am not, nor have I ever been a FFC patient. I started my treatment protocol alittle over two years ago before the centers were even open.

    My protocol is almost a carbon copy of what the FFC does ... mine was/is just spread out alittle more .... You cannot fault the FFC's unless you also intend to fault me. Our treatments are one in the same.

    From the facts and figures posted by the FFC patients, I have actually spent more in the last 27 months then they have on basically the same protocol .... does that put me in a bad light too?

    Mikie's treatment has been very similar as well .. .. and started even before I started mine.

    Please give these protocols a chance ... you might benefit from them .... and you don't have to put one foot inside the FFC door.

    E.
  5. Countrymom

    Countrymom New Member

    Hi,

    It sounds to me like your lyme is worse. Did you test for co-infections? Alot of us with lyme have the co-infections as well and don't test for them.

    If you haven't been to lymenetdotorg, go over there and read, I think you will find some answers.

    Sorry you are sick again, I am on the EBV/Lyme protocol at the FFC as well.

    Good Luck,
    Dani
  6. GBHope

    GBHope New Member

    I was not attacking the FFC. I said that in my post. I just wanted to know how people were progressing and what they had to maintain how well they're feeling. It was not meant to be a negative. I have nothing, and I do mean nothing, against the FFC protocol or those of you who are following a similar path. I'm just watching with interest, so sorry if you misunderstood what I meant. I hope you are able to get back on track Josh. It's scary to feel lousey.

    GBHope
  7. bpmwriter

    bpmwriter New Member

    i sympathize with your situation. after being sick for about a year, i experienced something close to a remission simply by eliminating stress (quit my job), seeing an acupuncturist and chiropractor regularly, and taking a low dose of lexapro for sleep, mood and pain management. then i got greedy and wanted to feel 100% better rather than 80-90%. i felt like there was still something i was missing. after abandoning the above approach, i went to the ffc to see what they had to offer. like you, i have absolutely nothing against their approach; i felt i had nothing to lose and everything to gain. i felt better for a couple months on their approach to treating my hormonal imbalances and EBV, then one day, had a terrible relapse that brought with it a return of a lot of the viral symptoms that i had overcome during my remission. it was almost like the anti-virals and transfer factor, stirred up a wasp's nest! it was a long hard tumble downhill for me. unfortunately, the more i try to rationalize the whys? of my illness, the more hazy things become.

    right now, i'm trying to replicate the conditions that contributed to my ealier remission, but the relapse brought with it some new respiratory problems that have changed the playing field just enough to confuse everything. it's sort of like putting together a picture puzzle and the image changes halfway through!

    i'm watching to see what kind of long-term gains the other ffc patients experience. right now, any improvements have to be considered short-term in my opinion. the ffc's simply haven't been around long enough to prove long-term success. it's interesting to me that they say it will take 6 months to a year to feel better. they haven't even been around that long so how can they say that?!

    two questions: 1) do you like your job? i'm wondering if going back to work could've induced a relapse.

    2) did you party hard on new years? this might seem like a silly question, but right before my relapse i went out dancing and drinking (heavily) like i almost never do anymore and i often wonder if it didn't contribute to my decline.

    be well,
    eddie
    [This Message was Edited on 01/20/2006]
  8. elsa

    elsa New Member

    Honey, didnt think you were trashing the FFC's ... was hopeful that you might feel alittle more comfortable with their protocol if you saw someone completely unrelated to the clinics following the same protocol and in remission.

    I realize there have been some back and forth shots over these clinics ... My intention was not to re-start them, but maybe to give you other insights into the same program that you might have a better comfort level with ... and maybe see the cost aspects of the protocol are high regardless of where treatment is sought.

    Take care,

    Elsa
  9. GBHope

    GBHope New Member

    I wouldn't mind going to the FFCs, but my family can't afford it. I might not be able to do their protocol at the speed they go at because of super sensitivity. Right now I am working with my chiropractor as I stated previously and like you were saying about the cost, I have to take small things from that too and can't go crazy with what he would like to do because of cost. We already went through a bankruptcy a year ago because of my illness. Didn't you say you weren't going to the FFCs, but were following the same protocol with a group of different docs that you had put together? I wish my doc was more open-minded. I am going to talk to him some more about all this. He has done a lot of research into our illness and that is why I went to him years ago. Unfortunately, the poor guy couldn't treat me much because I was so sensitive to everything. Talking about the FFCs again, I tried to apply for their carecredit because I have been building our credit back up, but they couldn't even approve me, so don't know when I might be able to go. I have already put so much expense on my family. I went to a guy about 1-1/2 hours from here at the beginning of my illness and he didn't really help me either and I could never afford all the things they wanted to do because it was money up-front there too. Wish getting well was a little more affordable and the drug companies and insurance companies didn't make it so hard for our docs to treat us.

    GBHope
  10. Juloo

    Juloo Member

    How do you know that you're actually having a relapse? I ask this because I am also going to the FFC -- I'm from Florida. There's been a bug going around down here for about three months...my husband came down with it right after Christmas. I've never seem him so low -- he was like death warmed over. It has taken him several weeks to get 'almost' back to normal. He had everything from sore throat, headaches, mucus production, chest infection, pain in his joints, etc., etc., etc. He was the healthy one around here. So is it possible that it could be something new entirely?
  11. GBHope

    GBHope New Member

    to see the success of those trying the FFCs. I agree with you though Stormyskye, I could never afford it at this point either unless they start taking insurance. I wish there was a tried and true cure for each and everyone of us. All we can do is keep hoping and praying. And like you said, there is always the conspiracy theory that people knock around. I was on another site and someone had an article from someone regarding the Mycoplasma virus and the conspiracy theory. It was interesting to read anyway. No, I'm not paranoid, LOL. How are things going for you? I am still fighting that influenza bug with my natural antibiotic regimen. Have you gotten over yours? Hope so. You take care and keep on developing your treatment with best of luck to you. I will be watching and listening to see how you and everyone does, including myself, LOL.

    GBHope