FibroandFatigueCenter patients

Discussion in 'Fibromyalgia Main Forum' started by pattieland, Nov 9, 2006.

  1. pattieland

    pattieland New Member

    I have been, and have been very ill and off all supplements and frankly, has scared the heebiegeebies out of me cause I now have to trek to docs office locally b/c blood platelet count is high and suffering diarrhea for 6 wks now, can hardly eat anything, except bland, bland, and still run to bathroom shortly after eating. I was very sick same day on only 1 vitamin/mineral IV infusion, then started supplements and ok for a few weeks and diarrhea started and hasn't quit unless I take imodium for it. Completely stressed now, and FCC doc says it must be something other than supplements - I am off everything now - and frankly scared to go back for infectious disease panel in fear of what my reaction will be - paid all this out of pocket for out of town treatment pkg (I have to travel AR to Dallas) and I do not know what to do no. Feedack from others doing FCC would be so helpful. Thanks!
  2. WendyC

    WendyC New Member

    I go to the FCC too and had chronic diarrhea for years. As soon as I eliminated white flour and sugar the diarrhea stopped. If I cheat it comes back. Dairy doesn't affect me but it affects some people. I would try this. Good luck.

  3. mollystwin

    mollystwin New Member

    I'm so sorry about your problems! I do go to FFC but never had this type of problem. In fact my IBS got so much better after treating my candida problem. I do very well with my IV's. I love them actually, they really help me.

    Maybe you should try eliminating some things from your diet to see if that helps.

    Can anyone else help pattiland????
  4. cmc123

    cmc123 New Member

    Hi Pattieland,

    I also went to the FCC, drove 7 hours one way to get there and purchased the out of town package, along with several hundred dollars worth of supplements. When I started having reactions to some of them, my blood tests started coming back with scewed liver panels, my thyroid was messed up and I started having problems with kidney stones, along with other things going on. They would not acknowledge that it could possibly be any of their supplements! However, after 3 months and coming off from them, my blood tests are back to where they were before I went. The dr. at the clinic just kept telling me, none of their supplements could cause any of the problems I was having. I sit with 2 more phone visits pd. for that I am afraid to use!! Nice profit for them!
  5. Jillian40

    Jillian40 New Member

    My name is Jill and I live in Phoenix.

    I started with the FFCs 1-1/2 years ago and have had mostly successfull outcomes.

    Two of the important things that they had me do were to test and find the hypercoagulability of my blood and to go on a conservative protocol of OTC Bromelain to help keep my blood from being so sticky. Then when I was started on an antiviral and antibiotic later, my body was able to be helped more by this. The other thing was to discover my low thyroid and adrenal burnout and begin tx for these.

    I am able to continue working as a result.

    In regards to your diarrhea, you might want to ask the doc at FFC is the Questran and Vit. C protocol would be good for you. This is another treatment for infections. The Questran acts like a sponge to absorb the infection from your bowel so it doesn't get reabsorbed back into your body. A side effect of the Questran is that is can be somewhat constipating. So this may help your "D" symptom.

    Though you are understandibly nervous and scared by these recent changes, I would encourage you (and others) to not give up and stay with the recommendations of the FFC for awhile longer. SOOOOOO many of us have been helped by them.

    Just tell them that you'd like to take things slowly or more conservatively.

    All the BEST,
    Warm HUgs,
  6. wildworld

    wildworld New Member

    I agree that FFC should be the ones scrambling to figure out what's going on with you, but like most doctor's offices they seem desensitized to what their patients are going through. I went to the one in Torrance, and was fortunate that I lived there, so I didn't have to travel far. But most of us don't have the kind of cash they charge, so they really ought to be bending over backward to make it right for you.

    If you decide to stick with them, my best advice is to be your own advocate. Bring someone with you who is assertive, because I found that during/after some of their treatments I wasn't able to do much for myself. Then simply refuse to leave the office until you feel satisifed that they're doing all they can to help you. Make sure they've heard all your concerns, answered all your questions, gone over all your medications and treatment options and explained why they would choose one over another. Sometimes they seem to know exactly what they're doing; other times they seem clueless as all hell. They put me on magnesium to help with my migraines, which ended up giving me diarrhea, and when I couldn't figure out what was causing it, they knew right away it was the magnesium and took me back off it. But another time they started me on blood thinners, and I had my period for almost 2 months straight, and they kept saying it couldn't be because of the blood thinners. I finally told them I was just going to stop taking the injections, and my period went right back to normal. Seems to me it shouldn't have taken a genius to figure that one out. So you really do have to be your own advocate.

    Finally, if you've tried and tried and still found not enough relief, try another doctor. I recently had to move across country and was scared to death to leave FFC, even though I was never totally satisfied with them, because I'd had so many bad experiences with doctors. But I did a lot of research and found a rheumatologist in the area who was recommended, and after seeing him just once, he adjusted one of my medications, and I'm sleeping so much better, taking fewer pain meds, feeling more active, and have stopped paying out the nose for buckets of supplements that I don't think ever really helped anyway, and am just using the few that did. Much cheaper, much easier to swallow. So there ARE decent doctors out there. Don't give up.
    [This Message was Edited on 11/11/2006]
  7. bigmama2

    bigmama2 New Member

    I have had IBS - diarrehea for many years. What has helped me is taking quality probiotic supplements, and eating more fiber, and fiber supplements. A great fiber supplement is found on an IBS website "help for IBS" run by a lady named Heather. I think it's called Heather's Tummy Fiber or something like that. Not expensive. It is great stuff!!!

    Hope you feel better soon!!
  8. pattieland

    pattieland New Member

    THANKS to all of you who responded to my questions re FFC I went to Dallas, live in NW AR). I have not used this site before til another patient from McAlester OK told me of it - she takes twice weekly trips to FCC Dallas for antiviral IVs.

    Unfortunately.....I am not that far and am still very nervous about pursuing this further - even tho I have paid for the Long Dist. Pkg. ($2k upfront which included bucketloads of all the supplements I can't take a one of....)
    Firstly, I have NEVER had a diarrhea prob. til the supplements in Sept. - other way - IBS with constip. & 2 hemorrhoid surgeries because of constipation due entirely to IBS - NOT not enuf fiber - my diet is excellent & has been since I endured H. surgeries - ouch - worse than natural childbirth..
    Dallas doc insists it is NOT supplements, but there is NO OTHER EXPLANATION - I have been running to labs here locally for CBC's, stool cultures, kidney stone diagnosis after ultrasound; no other possibility after all this time and diarrhea still will not subside without Imodium - I am on a very bland diet - BRAT diet - bananas, rice, apples, tea, recommended by local drs ofc. The only improvement is that I saw a endocrinologist 8 da. ago and he switched me to Synthroid balanced with 10% Cytomel - boundless ENERGY already (this was at my own suggestion to switch from Armour)I am very well read, generally (worked as a journalist before I became so ill). NO problems being assertive here - I was downright desperate when I flew to Dallas & paid (now up to $3k) out of pocket. I have felt that they have not treated me as I should be treated AT ALL and am frankly "scared" to let them continue to screw up my system. When I say someone like me has NEVER had diarrhea before, esp. diarrhea now for almost 2 MONTHS - to take anymore of their supplements would be suicidal. I run the risk of not being able to be treated locally if I continue! FCC told me to go to my own docs - and I have done that - faithfully - and all they want is me to stay with the program and come for more blood draws, my infectious disease panel next time, and FCC doc prescribed nystatin, testesterone, progesterone, cortisol, etc. - which I have not even been able to take yet due to ongoing diarrhea. Also my endo. said that the cortisol test they did was useless at the time of day it was taken (I go to lab here for that test at 7 am this wk) and that testo. & cortisol would make me GAIN WT. which is exactly opposite of what I want, I am heavier than I have ever been, even when pregnant 23 yrs. ago.
    I do invite as well as appreciate all your comments/feedback; I will have to cancel my appt. in Dallas scheduled for later this month - I truly am very apprehensive - I was disappointed immediately in their not even warning me that I might get violently ill after the first visit IV infusion - I was scared I could not make the flight back home next day. And I am the most assertive person I know - there is no one else who can speak for me. I am it. So I will continue to hear all your feedback. I am so happy some of you have seen positive results, but I am skeptical that they are only in it for profit, and if we're EASY to treat. Any more thoughts on that one?
  9. wildworld

    wildworld New Member

    I'm really fascinated by these responses. Especially that many people have the same experience of requesting lots of revisits, and the expensive supplement regimine. I got the impression that they actually brand those supplements, they don't just sell them. And most of the supplements are more than pricey. Think how much money they would make if all of their patients took all of the supplements they recommended for years and years. That's a heck of a financial return.

    Having said that, a few (two) of the maybe 15 supplements they started me on continue to be helpful, and I continue to buy them even though I'm not their patient anymore.

    The other thing I have to say, in fairness, is that Holtorf did recommend a lot of tests that, in the long run, have been helpful for me to have to show other doctors how much had already been checked and ruled out, and how long the viruses, like EBV, continue to be active in my system. I am hopeful that they will be helpful with social security too. And, he did find that I had such a low amount of seratonin in my system, that none of the SSI depressants have had anything to work on, and that had a lot to do with the pain as well. Since he put me on thyroid and seratonin, I contine to feel better.

    So I guess there is good to be said, as well as a lot of frustration. I especially hear you about not being told you would get sick after a treatment. That happened to me so many times my husband yelled at them once for it. But if you know what you're looking for, they'll do a test for it, for sure. They're less helpful when they don't know what they're looking for. Then they just treat you as if you have everything, and it ends up being a lot of meds and supplements. It got to where I couldn't tell a symptom from a med. side effect any more.
  10. pattieland

    pattieland New Member

    I can't seem to get off this message board tonight - I am eager to read and post, and learn all I can!

    The more interesting thing to me was that all I had in the IV was vitamins & Minerals and got so violently ill all night in hotel room bathroom (then a Migraine at 4 am to boot) and had not idea of any of this coming. Now sick since on supplements only 1-2 weeks. It is s c a r e y /
    I must say I do not have confidence in the doc who I saw - I had the impression he only saw $green$ but how do I convey a doc change? I have read others say that their docs at FFC are "better" - wonder if I should change to the one in Ft. Worth? I actually know someone who lives there and could possible stay overnight there and save hotel bills. I am truly scared to go for more tests/IVs that will surely make me sick. I am disabled but trying desperately to return to work - job hunting now, btw. I can't travel each week to get IVs - and I was NEVER informed this on website - and the doc in Dallas first REFUSED to have a phone consult with me after my test results. I had to insist to talk to program director and inform her that I PAID the long distance package UPFRONT for that reason. She said she would get back to me, and only then did they agree to do a phone consult with me! THe doc there was "NEW" and didn't appear to know what a long distance package was! They were not nice to me at all by phone.
    Another Q- does anyone know whether it is true that the portion Medicare pays for your labs is ALL you can be charged for labs? I am being billed from Quest Labs now for what Medicare did not pay on blood work. My Medicare rep. says IF a facility accepts Medicare, they can not charge you anything else in addition. Anyone know? I have not called Quest Labs to argue that point yet. Only so much energy. I am having a hard enuf time explaining in job interviews why I haven't worked for 8 yrs. You can't tell them you've been sick!!!!!!!!!! G'night again ya'll. You're great. Pattieland
    [This Message was Edited on 11/12/2006]
  11. wildworld

    wildworld New Member

    I'm sorry you were so sick. I guess I might have gotten that sick as well, if I was away from home and traveling and trying to do everything myself. I was fortunate to live near the office.

    Why they won't talk to you on the phone, I do not understand. Personally I just can't imagine treating a patient that way. I can't say why they would do that, even if they thought you hadn't "paid" for it.
    Sorry I don't know anything about Medicare; I haven't had any luck with social security. They denied my initial claim, and I can't get a hearing until next August at least.
  12. Boo3

    Boo3 New Member

    hi pattieland.. i have been reading ur post and all the debating on rather i should even go i too would be traveling.
    as for ur ? regarding medicare pymts..when an office or facility says they take medicade(?) or medicare...that is what the are agreeing upon.. they pymt in which THEY pay
    i ran into this issue a few yrs back regarding my gr. parents. so the facility had to ACCEPT that PYMT..unless something has changed.

    i wish uu well on ur upcoming test..plz keep posting to help others like myself, altho i now find myself in "limbo" debating on rather to go to FFC or try to find other means here.

    if any one knows of any doctor in oklahoma i would greatly appreciate the info...

    now like urself i cant stop reading tonight but i am calling it a "nite or shall i say "morning"

    plz tc pattieland...
    try to keep smiling through this...
    thoughts are with ya...

    ps: sry for the grammer/ body is so tired but yet once again cant hagn
  13. wld285

    wld285 New Member

    I have had 3 appointments with ffc, and am very happy with them. If I think I am having trouble with one of the supplements, I stop and talk to doc about it.
    Since I live so far away, and my sleeping problem is not resolved yet, he is having me call hime once a week to change meds etc.
    We have to understand this is very complicated and I, for instance, have had this 40 yrs., and I know it can't be changed over night.
    My best to all of you
  14. suzetal

    suzetal New Member

    Patients’ Bill of Rights

    I. Information Disclosure
    You have the right to receive accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, assistance will be provided so you can make informed health care decisions.

    II. Choice of Providers and Plans
    You have the right to a choice of health care providers that is sufficient to provide you with access to appropriate high-quality health care.

    III. Access to Emergency Services
    If you have sever pain, an injury, or sudden illness that convinces you that your health is in serious jeopardy, you have the right to receive screening and stabilization emergency services whenever and wherever needed, without prior authorization or financial penalty.

    IV. Participation in Treatment Decisions
    You have the right to know all your treatment options and to participate in decisions about your care. Parents, guardians, family members, or other individuals that you designate can represent you if you cannot make your own decisions.

    V. Respect and Nondiscrimination
    You have a right to considerate, respectful and nondiscriminatory care from your doctors, health plan representatives, and other health care providers.

    VI. Confidentiality of Health Information
    You have the right to talk in confidence with health care providers and to have your health care information protected. You also have the right to review and copy your own medical record and request that your physician amend your record if it is not accurate, relevant, or complete.

    VII. Complaints and Appeals
    You have the right to a fair, fast, and objective review of any compliant you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the conduct of health care personnel, and the adequacy of health care facilities.

    For more information on patients rights and responsibilities:

    Prescription Medicines and You, presents information on what you need to do to take your medicines safely, and how to get help when you need it.

    Agency for Healthcare Research and Quality (AHRQ), a part of the U.S.


  15. wildworld

    wildworld New Member

    I'm glad you've had such a good experience with them. I think we all understand how complicated this illness is. It's just that not everyone has had the same positive experience you have had. I hope they continue to be helpful to you.
  16. lavender14

    lavender14 New Member

    I too have gone to the FCC center 2 years ago. I am in Ohio and the center is 20min. away. I felt great after 2 months, but I left after 3 months. I wasn't thrilled w/the doctor, who told me she would give me something to help me sleep-and then I walked out of there w/$800 bill for the 1st visit and the supplements.

    How do you know what is working if you are taking 11 supplements?????? After $2,500 I havn't gone back.
    some days I want to, and others I don't because of the few bad experiences with the doctor(personal - offensive comments).

    Does anyone have any new info for the cronic fatique?


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