FFC maintenance plan?

Discussion in 'Fibromyalgia Main Forum' started by cherylsue, Dec 23, 2006.

  1. cherylsue

    cherylsue Member

    I keep hearing that the FFC has a maintenance plan once the CFS/Fibro seems under control. Does anyone have experience with this? What supplements, tests, protocols do they do upon followup?

    I know CFS can occur and again even after recovery. That's what is happening to me. I appreciate any tips to keep on top of CFS - not only in recovering, but staying in recovery.

    Thanks for your input.

    CherylSue
  2. dahopper

    dahopper New Member

    I have not gotten that far yet with FFC or I'd try to help you. I would like to know the answer to your question too. I go to my FFC this coming Wednesday and will give you a update and info I find out.

    Merry Christmas to you and your family CherylSue. Hugs and Love Debbie
  3. cherylsue

    cherylsue Member

    Hope you are feeling a little better for the holidays. Which FFC do you attend? I wish there was one in Illinois.

    I see from your profile you are in Oklahoma. Any chance of a white Christmas? We are supposed to be getting a light dusting for Monday in Chicagoland.

    A happy and healthy New Year to all!

    Hugs,
    CherylSue
  4. cherylsue

    cherylsue Member

    Hi Debbie,

    How was your visit today with the FFC? I'm anxious to hear.

    Hugs,
    CherylSue
  5. dahopper

    dahopper New Member

    Thank You for asking and thinking about me. In fact we just got home a little over a hour ago so it has been a long day. We drive almost three hours one way but worth it. I really am happy with my doctor and all of the employees there.

    My visit went well with my doctor and he had more blood work done on me today to check my hormone levels.
    I am feeling great in fact I am exploding with energy. I am still on my same medication schedule at the moment with no changes yet. I am taking the Flagyl and it did not down me like he said it would so that is a good thing. I am so happy with my treatment and I am so grateful for my aggressive treatment. I can see a Huge difference in how I feel.

    Oh and the supplement they are so excited about is called Epicor....google it and read about it. The doctor said he is taking it along with his wife and seven kids. (wow) 7 kids. LOL

    Really not much to report no changes in meds other then the Epicor at the moment.

    I had a energy shot today and will be bouncing off the walls tomorrow. LOL .....LOVE it.

    How are you feeling? I hope you had a wonderful Christmas. What is your New Years plans? Ours is staying home. LOL

    Oh I did put a new pic in my bio with me my husband and Yorkie babies. Good night CherylSue. Hugs Debbie
  6. dahopper

    dahopper New Member

    You are exactly right about the maintnance they told me today that is where alot of people relapse with there program, they start to feel good and stop going and relapse. I know they say after you get well you can stop alot of the supplements and stay on the most important ones to help keep you well. I only have to go back now every 8 weeks.(to see the doctor) NO more IV's ...Yea !! But we will go every two weeks for shots we want to take that help us so much. My treatment started August of this year and it has chaned my life. Hugs, Debbie

    [This Message was Edited on 12/27/2006]
  7. cherylsue

    cherylsue Member

    Thank you for the tips.

    I am so glad, Debbie, that you are feeling better. That is wonderful. How long have you had CFS?

    McCourtney, are you improving on your treatment plan? How long have you had CFS?

    I keep relapsing, and I'm certainly scared. Each relapse takes a little more stamina from me. I don't want to go into permanent relapse.

    Mild exercise I can manage, but stress I can't avoid. Impossible with children and ailing parent.

    I'm interested in checking out the supplement Debbie recommended.

    Wishing you all a healthy, Happy New Year!

    Debbie: I like your new photo, too.

    CherylSue
    [This Message was Edited on 12/28/2006]
  8. cherylsue

    cherylsue Member

    What brand Epicor are you using? Did your FFC recommend any specific brand?

    Thanks.

    CherylSue
  9. cherylsue

    cherylsue Member

    Your little cuddly Lulu is adorable. I hope you improve enough to enjoy your family over the holidays.

    Hugs,
    CherylSue
  10. cherylsue

    cherylsue Member

    I responded to you on another post - Epicor.

    Thanks so much for sharing!

    Hugs,
    CherylSue
  11. Slayadragon

    Slayadragon New Member

    Debbie:

    I'm so happy to hear that the FFC has been helping you! It gives me hope that there is a light at the tunnel if I actually stick with this.

    I will look into the Epicor and put it on my list of things to talk about with my doctor. The list is getting long, but I certainly will get around to it eventually since I intend to see him on a much more frequent basis in the coming months.

    Are you taking anything else that it supposed to stimulate/modulate the immune system? Or have you? What have your experiences been?

    **

    Does anyone know this?

    The Epicor site points out that the products is not supposed to increase autoimmune problems because it is an immune modulator rather than immune stimulant.

    Do other immune products (the mushroom stuff, the larch tree stuff, olive leaf extract, etc.) stimulate or modulate, do you suppose? Is there a chance that they increase autoimmune response? I've never read that any of them do, but that doesn't mean that they don't.

    ***

    McCourtney:

    I don't see any reason why anything that's available now (most certainly Ampligen is included in this) would make CFS go away permanently. I think it may be possible to go into remission for an extended period of time (hopefully permanently) with the tools available now, but I would like to do my best to make sure that they're being used in the right way.

    I agree totally about the mental stress thing. Everyone always talks about the push/crash thing in terms of physical exercise, and I have some of that. But pushing myself in terms of mental stress (or just randomly getting worked up) gives me a much bigger crash. And everyday stress makes this illness worse too. it's hard to avoid it totally, but to the extent that it can be reduced I think that we're all far better off in the long run.

    I used to be able to exercise more than I do now with the same level of exhaustion. I think a good deal of it has to do with tiredness because of the Famvir etc., but my muscles undoubtedly have deteriorated too. Hopefully I will be able to get them back.

    My doctor recommends a lot of Vitamin E also, but I've never noticed it helping a lot. Maybe if I improved a lot I'd feel the difference, though.

    ***

    Jolie:

    LuLu is adorable and makes me vaguely inclined to go get my own puppy. My grandparents had a toy poodle when I was young, and he was terrific.

    Unfortunately my husband is not crazy about animals (the notion of indoor pets is a little unusual for Chinese people) and it's totally impractical to have a dog if you're away from home as much as we are. It's still a lovely idea though.

    It surprises me that the doctor at the FFC would tell you that you're not "that sick." You would think that they've learned enough from conventional medicine to realize that it's impossible to tell from tests how sick someone is. And even if you don't seem as sick as other people on their tests doesn't mean that you're not doing poorly on things that they have not yet started to measure.

    Again, I'm increasingly convinced that CFS patients need to act as our own "doctors" and to use M.D.'s as a source of ideas, "research info" (from all their patients), lab tests and drug prescriptions. No one (including my doctor) knows much about this field, and so regardless of how good someone is, s/he is still just guessing. I wouldn't take that kind of comment seriously, therefore.

    ***

    Happy Holidays!
  12. greeneyeslk

    greeneyeslk New Member

  13. Slayadragon

    Slayadragon New Member

    I'm of the impression that Ampligen works only on the Rnase problem of CFS, not on the NK Cell part, (That seems to be the deficiency that the AV's--which kill herpes viruses normally kept under control by the NK Cells--is targeting.)

    This would explain why (to my understanding) Ampligen has been only partially successful at making CFS patients better. The ones who have benefited have gone from a 2 to a 6-7. Having been a 6-7 for a long time, I am all too aware that this is not being well. Not that it's hell, but I've gotten so bored with it as my life goes slipping away that I'm very motivated to get well.

    Of course, you may think the reason that these patients don't get wholly well is because of toxins, and that's possible. (I would like your detox info, of course.) My NK Cell activity is in at least as bad shape as my Rnase though, and I can't believe that won't need to be addressed if I'm to get better.

    for the protocol, try either switchboard or just aol.

    Do you really feel like I'm picking on you? It's that academic habit of quizzing people and picking (okay, I guess you're right) things apart with a stick, I guess.....
  14. munch1958

    munch1958 Member

    As far as I can tell, there is no "REAL" FFC maintenance plan. I was never given anything in writing on it. It's just more of the same treatments and less of the pricey supplements. Count on staying on hormones for life if you need them.

    I started in March 06 and was zipped into "maintenance" in July 06 because I was doing fantastic. It was kind of shocking because I've had CF since 1981 and FM since 1997. It couldn't be this simple!

    While the T3 was being titrated upwards, my HGH hormone levels were on the rise and all of my other hormones were working for the first time in years. I looked and felt like a whole new person. Everyone I know was asking what I was doing because I looked great. My hemotologist told me I was "radiating good health".

    When the FFC doc changed my thyroid meds in August from pure T3 to a T3/T4 combination I crashed. It became harder and harder to keep up my workouts. The fact that I was back to working out was a miracle in itself.

    My husband told me today that he thinks I should quit messing around with alternative treatments like FFC and do a trial of Synthroid. (That didn't work for me in the 80's so why would it now?) He does so well with standard TSH dosing from his endocrinologist. Of course he has no hypothryoid symptoms and has never had any! He has a multinodule goiter.

    Because I'd been complaining since Aug the FFC gave me a free doctor's visit in Oct and redrew my labs in Nov. Like I had been saying for months my hormones were not working but now I have the proof in writing.

    The FFC has increased my T3, tripled the pregnenelone, doubled the DHEA and quadroupled the supplement that's supposed to release growth hormone. So far, it doesn't seem to be working. I am taking my labs to another doctor in Jan for some help with the hormones.

    I went back to the FFC for a repeat infection panel to check on EBV and chlamyadia pneumonia titers. I'm going to try to make the trip from Central IL to Detroit at least once a month for antiviral IVs. All of this is the same protocol that I've been doing since I started there!

    Even the FFC docs are not immune to being human and making idiotic comments. When I voiced some concerns about nebulizing glutathione my FFC doctor told me my MCS wasn't that bad! There are patients here that are far sicker than you and they are doing it!
  15. Slayadragon

    Slayadragon New Member

    So what you're saying is, you were doing great.

    Then for some reason, they decided to add T4 to your mix.

    Then you crashed and haven't gotten better since.

    Is that all there was to it? Do you think that the T4 caused you to crash permanently, in and of itself?

    I'm fascinated by all the stories we have here.

    Note that the doctor in Pittsburgh (?) told Jolie that she was not that sick either. Is that their new routine? That's pretty odd if so.

    Anyway, I am currently at 150 mcg of T3. I seem to be able to tolerate 165 mcg, and so am going to try going up to that level.

    During the times I have taken even the smallest amount of T4, I have had symptoms of thyroid overdose (sweating, pounding heart, insomnia, diarrhea) within a few hours. This occurred with both Synthroid and Armour.

    I don't understand this effect, but it is consistent.

    The experiment didn't set me back permanently though. The next day I was fine.
    [This Message was Edited on 12/29/2006]
  16. mollystwin

    mollystwin New Member

    I go to the Detroit FFC too. I have some issues with them as well. The dr will not give me an ignenix lyme test because nothing showed up in my western blot. She says I dont' have lyme. So far everyone else in my family who had CFS or FM turns out they have lyme so I want an ignenix test to rule it out. She refused to give me one and I can't understand it! I have an appointment in two weeks for a test with a different dr. If it's possitve, I'm changing drs and writing FFC corporate a letter.

    I'm sorry to hear you were doing so well and crashed! You were even working out, you must have felt pretty darn good! I hope you get back to that level soon. I felt pretty good after the first few months too and sang FFC praised, but crashed in late Aug. Had a upper resp infection that set me back.

    Now I feel much better now but have some joint pain and muscle aches which I sure hope are not related to lyme!
  17. dahopper

    dahopper New Member

    I had to make FFC do a ignenix Lyme test on my husband becauce his western blot came back they say ok ?? Anyway they did the test on him over a week ago. I tested positive for Lyme and they did the ignenix on me and I could never understand why they didn't on him. Oh well we will see in a week or two the out come.

    Also I am in a small crash mode and have not felt well now sinse last weekend. I have been dragging around and its been terrible. I guess I sang the praises too long and loud and it backfired on me. I hope I'm not doing like you and now will go backwards from first doing good with FFC.

    How are you doing now? I hope better. Anyway just wanted to say Hi and tell you about my set back too. :(
    Love, Debbie
  18. mollystwin

    mollystwin New Member

    Let me know the results of your hubby's test. I hope he doesn't have lyme. I wonder why you had to insist on the igenex test? Strange.

    I hope your crash mode doesn't last long. Lyme can be a tough thing to battle.

    I have been doing a bit better lately. But not back to where I was last summer.

    Your yorkies are adorable. I want a yorkie but we have a border terrier right now who would be very jealous so my family won't let me. But someday I will have one!!
    [This Message was Edited on 01/05/2007]
    [This Message was Edited on 01/05/2007]
  19. munch1958

    munch1958 Member

    Dahopper: Sorry to hear you haven't been feeling well! Hopefully, things will turn back around. Maybe it's just a flu bug going around.

    Mollystwin: Are you doing any better? I think things will improve in Detroit with the addition of another doctor. Have you met him yet?

    On Lyme: When the standard infection panel results came back last April they told me I had Lyme because a few of the bands were positive on the Quest test. This was a diagnosis that finally made sense to me as I had horrible rashes as a kid that never cleared up with RX cortisone creme. My sleep initiation and duration insomnia started around this time. Hmmmmmm! The FFC redid the test using Igenex and it came back negative.

    I keep hanging on with Detroit FFC because I felt so fantastic for those first few months. People were asking me what I was doing because I was radiating good health and looking younger. I swear my hair was back to curly instead of lifeless and flat and less grey even though I had not dyed it. Back then I thought there was some room for improvement but now I'd settle for 1/2 the energy I had in early summer.

    I kind of like the new doctor. He seems more decisive. We flew to Troy in our small airplane (2:45 minutes with a tail wind) on 12-19-06. We left at 6:40 AM as soon as it got light enough to see outside. We grabbed a courtesy car at the airport then zipped to the center -- no easy task with the traffic.

    The new doc did the trigger point injections, the nurse did two IVs and then they drew some blood for repeat testing on the infections. We got back to the Troy airport about 15 minutes later than we wanted to return.

    We made it home at 4:15 PM with about 15-20 minutes of sunlight left. It was a VERY long day. I'm not sure we are up to the task of repeating this every 2-3 weeks. Picture sitting in a space smaller than the average Lazboy armchair for 6 hours with NO HEAT and NO POTTY.

    Didn't the FFC send out a newsletter saying they were partnering up with a service to administer IV therapy at home? I haven't heard a word about it other than the newsletter.
  20. mollystwin

    mollystwin New Member

    My twin sis also came back positive at FFC for her Quest western blot. That's why FFC gave her the Igenix test which was also positive. My quest test was negative so she concluded that I don't have lyme. My SIL had a negative quest western blot and 4 months later had a positive igenix. She has been very ill for 4 years. Per my research the quest tests are only 50% accurate, that's why I want an ingenix test. So I made an appointment with my sisters new dr. to get one. We'll see what happens.

    I am still at FFC for now. They have helped me and are my best option right now. If I have lyme though I will go to my sisters dr. He takes my insurance and has been treating lyme for a number of years.

    I have met the new doctor. He seems very nice. Young too. It's good to know that you like him. Will you be seeing him from now on? My next appt is with Dr. M.

    Did you know that they are expanding thier office space? That's why it's been so noisy there. Business must be good!

    I didn't get the newsletter you mentioned probly because I'm here in town. I live about 6 miles away from FFC. I feel for you having to travel in those conditions. Without a bathroom or anything! After IV's I really have to go quite a lot! But it must be nice to have your own plane and convenient to have that airport so close to the clinic.