Don't miss this article

Discussion in 'Fibromyalgia Main Forum' started by cph13, Nov 8, 2005.

  1. cph13

    cph13 Member

    Although very interesting I would love to know what the protocol is so we could pass it along to our dr.'s that sometimes have no clue.Here's the site.
    http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6819
    Have a bloomin good day everyone
    cph
  2. Bambi

    Bambi New Member

    when did it say he started the centers? I am still waiting to hear from people who have attended for say a year and how they are doing. So far many are reporting good and bad results but I haven't seen anyone who has been going for a long time. I know it's very expensive and would be difficult or impossible for many to go or to keep going for long periods.

    They always stop me cold when they say they can "cure" these dd's because there just ISN'T any bona fide cure yet. I wish they would cite
    a LOT of cured people and get it in the JAMA or some journal of medicine
    citing "cures". It's hard to find any literature on these centers except their own.
  3. Mikie

    Mikie Moderator

    Is, unfortunately, just an overview of treating CFIDS. If one is to get the in-depth treatments needed, one will have to do more research in each area of treatment or visit a comprehensive clinic.

    Dr. Garth Nicolson has an excellent website for info on mycoplasmas and their treatments. One can have PCR DNA tests to identify mycoplasma infections, but it is easier and cheaper to try an ABX. Doxycycline is the first ABX of choice in their treatment. If one has a Herxheimer Reaction and then feels better, it is good evidence that there is a cell-wall-deficient bacterial infection.

    HEMEX Labs has an excellent website on hypercoagulation, tests, and treatment. Heparin is a good drug for breaking down the fibrin overgrowth which causes hypercoagulation.

    Herpes-Family Viruses often reactivate when one has CFIDS. An empirical trial of a good antiviral will most likely produce results if one is infected. Chronic EBV, CMV, and HHV-6 are common culprits. Doing a web search on stealth viruses will turn up a lot of good info. Famvir helped me with my viral infections.

    It is necessary to help build the immune system back up. I have had good success with probiotics, undenatured whey, and colostrum.

    I now pulse transfer factors after a three-month regimen on them. I take them for two days now every six weeks. This seems to help keep my immune system fighting all kinds of pathogens.

    Getting good sleep is key to healing. This is an area where trial and error seem to be the only way to find out what works best. For me, it's Klonopin, which also helps with the slight seizure activity which is common with us. It calms me and stops the racing brain and anxiety. I am now adding a bit of Children's Benadryl to help even more with sleep.

    Even what I've posted here is an overview of the regimen my docs and I have developed over 4 1/2 years. I had to do a lot of research to get these treatments. If one has an FFC nearby, it might be much easier to go there. They seem to have developed a comprehensive testing and treatment plan.

    Love, Mikie
  4. elsa

    elsa New Member

    FFC's .... I saw nothing in the article associated with the word "cure". I saw the word "treatment". Where did this come from?

    I am also writing in response to the 11-5 and 11-8 post respectively on the "Fibromyalgia and Fatigue Centers, Inc." thread. I'm trying to honestly understand the objections and negative opinions displayed here...

    I'm not a patient there, but all four stages of my treatment for CFS/FM are almost identical.

    Mikie, who helped me greatly with my anti-viral plan,also had an mirror image treatment ... An already established one for viruses and micoplasms and heperin injections prior to the FFC's openning their doors.

    My hormone treatment with focus on the HPA axis dysregulation in CFS/FM patients are on the same track as the FFC's.

    My sister and husband (who neither have CFS or FM) are patients of the FFC for anti-aging, preventitve treatment with IV's, vitamin/mineral treatment plans and bio-id hormones. How is this ripping them off?

    The FandF Centers were started my an MD who is also a CFS/FM sufferer, but to get this sort of thing off the ground one has to partner with a healthcare business big boy. The Centers have done just that with a very respected and reputible group.I can furnish the name and more information on this if you'd like.

    Quest Labs is also a hugh, intricate, well financed pathology labratory that many, many 300 plus bed hospitals employ.Hospitals "send out" for expert work. Some types of testing that hospitals order is too intricate and require extremely delicate and expensive machinery. Much more costly then hospptals want to purchase ... It's good business practice for them to hire Quest Labs to run the paths for them.

    Here again, I'm not a FFC patient, yet Quest Labs have done a great deal of testing on my samples since 1998. My insurance pays 100% ... no co-pay ... never turned down any lab work or refused to pay.

    With all this information, it is a complete mystery to me how some continue to call these centers everything but bottom feeder crooks. I still don't know about the word "cure". What is the real source of disdain for these centers?

    There is not a hospital administrator working today that will even suggest in poor taste that the Fibro and Fatigue Centers are run by fly by night, scam artists once they are presented with the papers listing the who's who behind these centers. .... Just won't happen.

    What makes them worth it ... The incredible testing that many doctors don't know how to order, the integrated approach with vitamins/rx'es/alternative therapies, .... The total belief in CFS/FM and a working knowledge of the latest studies (that can be researched without much difficulty)and treatment protocols, ....

    The understanding that some patients require serious rx'es to maintain them during treatment and do not bat an eye at prescribing them ... The same rx'es we have read about here, the ones doctor's are refusing their patients here over and over again.

    The FFC's say they won't quit on you ... the goal is the best quality of life with the fewest med/supplements and on going support for an incurable illness. Where is the fault in that?

    I am a licensed health and life agent. There is nothing "shady" about the FFC's insurance practice. It prevents the doctor's hands from being tied by the same insurance companies most people here hate. It was not designed to "steal" from patients or to "milk" them for every last cent. The FFC is not the only health care institute to do this either.

    By not filing in house, but making the insurance papers and forms available to the patient, the doctors have complete say in how they treat each individual patient. There is no time limit, there is no "dictated, exceptable treatment plan" set down by insurance execs, there is no rule governing what these docs can and cannot order lab wise, .... there is no refusal or financial threat to the MD for rx'ing a particular drug.

    These are not hidden opinions. They are facts that can be verified easily. By giving the filing papers to the patient, the FFC has taken themselves out of the "insurance business" .... leaving it up to the patient and their agent.

    With the average reimbursed coverage being between 60% and 80%, the battle cry of "they don't take insurance ... they are just fleecing you" just doesn't hold up.

    I've argued in support of the FFC's : Their treatment plans are well known to cutting edge healthcare providers. 2. Their testing is beyond thorough and handled by an extremely well known/respected lab, 3. Their understanding of medications, amino acids, supplements and IV therapies are detailed and involved,

    4. They treat more then just CFS and fibro, 5. By not filing automatically, they free themselves up to treat the patient as they see fit without the insurance executive industry telling them "no" and 6. They support and back up the patient when they do file .. whether it is insurance or disability.

    I've already mentioned my background. My husband is in a combined industry ... physician group/hospital administration combined with insurance guidelines and practices (private and governmental)within the healthcare community.

    I am interested in understanding the objections to the FFCs. There is always room for more knowledge and you might know something that I do not. With strong negative opinion against the FFC's perhaps I need to know something important ... Keeping in mind that my husband and sister are patients there.

    I'm looking forward to hearing back on this. I hope all are having a good day. Talk soon ...

    Elsa


    [This Message was Edited on 11/09/2005]
    [This Message was Edited on 11/09/2005]
    [This Message was Edited on 11/09/2005]
    [This Message was Edited on 11/09/2005]
  5. springrose22

    springrose22 New Member

    I agree with both of you on everything you said above: I believe FFC's are the pioneers for treatment of Fibro/CFS, and, as often happens with pioneers in any field, they can be maligned. I haven't been to an FFC yet, as there are none in Canada, but I am gathering information, and will be taking it to my Dr. However, if I get the Disability I applied for, then, I may just go to the FFC in Las Vegas in the spring. Marie
  6. karatelady52

    karatelady52 New Member

    After I get done with my regiment of abx and other supplements, etc., from the FFC, I would like to do maintenance with transfer factors so I always read your posts on them.

    I'm also very interested in the Rife machine. My husband has a friend who is building the software for me. (They are way overpriced and expensive if you buy one.) They've helped a lot of people I've talked to on another forum. You can set them to any frequency for parasites, candida, viruses, etc. There are a lot of websites that have lists of the frequencies.

    ELSA --- very well put --- my hat is off to you!!!

    Sandy
  7. dancingstar

    dancingstar New Member

    I agree with everything that you said.

    If people don't want to go to the FFC doctors, they shouldn't go to them. What they should be careful of doing, however, is making false claims or saying that FFC is doing or saying something that they are not doing or saying. Don't misrepresent them, please.

    Getting funding for acceptable double-blind testing is darn-near impossible unless you are a large Pharma, and what people are overlooking is the way that many of the large Pharmas submit their information several times so that it skews the statistics in their favor.

    Doctors are still under the impression, for example, that only 1 to 2 percent of the population have problems with Effexor when I know from having read the somewhat hidden statistics by rogue chemists and whistleblowers that it is more like 20 percent of the population that has problems with Effexor. The same is true with many of these so-called tested drugs.

    And it's funny cause even Dr. Holtorf thinks Effexor is a good drug for many people. I don't believe that he holds the same opinion that I do, which is perfectly fine. Apparently, he prescribes these drugs for people that he feels they will help that want to take them.

    What makes people so much more willing to accept the results of people that are knowingly lying to them than of doctors that are working hard to make people well?

    Frankly, it doesn't much matter to me as long as I get better. They can join us in getting healthy....or not. As far as I'm concerned, FFC is doing everything right and as Elsa said, there is no way that they can do this within the limitations of the amount of time insurance will pay for.

    It is generally accepted that we cannot get a good dentist if we are self insured. They won't work for the rates that those companies pay. Yet we expect good doctors to provide an excellent quality of care for for $15 to $45. It isn't going to happen, and it shouldn't have to.

    As I've said before, the standard of care at FFC is a step ahead of what traditional western medicine does. Maybe things will change at some point in the future once more doctors, lawyers, senators, and drug company executives have fibro and need the same treatment. Or maybe not if compassion overall is not given higher priority in this country than it has been receiving.

    Guess I'm having a soapbox kind of day.
  8. elsa

    elsa New Member



    Thanks so much for the kind words. It's nice when others appreciate your thought process! I agree Dancing Star about the false claims ... That sort of thing isn't good in any environment, but in this case, it might keep someone away from the type of treatments being done.

    I was sincere in asking for those who have negative thoughts/opinions to share the "whys" of them with me. I need to know about it, if it is indeed a negative fact.

    Maybe some who feel that way will post about it. Knowledge is best ,huh?!

    Karatelady, the TF's have been a big part of my remission. In fact it was the start of the natural phase that created the herx response. As Mikie has shared with me, it was more then likely the TF's and whey doing their thing that set it free. The anti-virals (rx) where necessary to set the stage for the TF.

    I have never heard of a Rife Machine ... but am very interested in hearing more about it. I take it it is used as a tool in the whole pathogen fight process? I look forward to hearing how it does with you.

    Springrose ... Hang in there. I would have gone to the FFC's had I known of them and their work sooner. I was already deep into my treatment plan before the centers truely hit my radar screen so I stuck with who brought me .. so to speak!

    It didn't prevent me from sending my husband there or my sister though!

    I wish all ya'll well. These DD's are frustrating and a handful, but remission is absolutely possible. Thanks again for showing your support for me and my ideas ... Oh and DancingStar ... Bring that soapbox out any ole time the mood strikes! We can dig it!

    Take care,

    Elsa
  9. elsa

    elsa New Member



    Bumping for chance to read ....
  10. orachel

    orachel New Member

    FFC cannot participate in direct billing patients' insurance or they would have to follow the standard protocol for treatment with the average MD...ie:10 minute history and approx 15 minutes or less per appointment. If they tried to offer the same detailed histories and 3-4 hour appointments, they'd have to pay themselves to stay in business.

    Quite frankly, the only reason i'm not a patient yet is that I figure waiting till the first of the year makes sense, as I have a $750 out of network deductible that must be paid every calendar year...makes no sense to pay it now, then again in January.

    I've not been a patient at FFC, but I have been a patient at a wellness center called Lifeworks in Florida. Long before I became ill, they used IV therapies to take me from chronically ill to the best health I've ever had in my life. Myers cocktails and specific anti viral and immunebooster IV's made me feel like a million dollars!

    It is difficult for me to see how I'm going to afford to pay FFC, but there are MANY options to force insurance companies to pay....I typed a huge post about this just last night...you can grab it out of my profile if you like...

    And also, they do offer carecredit credit card, so at least expense can be broken down into reasonable payments. So far, in 5 mos I'm WELL over 10k in traditional medical bills....well over 1k out of my pocket. Do I continue this indefinitely? Feeling wretched, but only paying my 10% co pay, or will I be better off in long run going to FFC, using credit to pay, and having more energy and being able to either return to work, or do something out of my home and contribute again financially?

    I think some of us go, and when we don't feel better IMMEDIATELY, stop going and get bad taste in our mouths. With herbals, supplements, Iv antiviral therapies, you OFTEN feel worse than better. When these toxins die, they still have to find their way out of your body! Yes, its yucky and uncomfortable....but you do feel better eventually.

    I can promise you all that 5 years from now I will NOT be sitting in this seat, on 15 prescriptions that are frying my body, and quite frankly still making me feel awful. This is no way to live.

    I'm open to other options, but so far, to me, the FFC's multifaceted approach seems the only way to regain some semblance of health. It may not be a cure...but it 10 steps closer than I've gotten with upwards of 50 doc appointments in the last 5 months!

    GREAT POST!!!!
    Rachel
  11. Mikie

    Mikie Moderator

    Rife machines are the big brothers of zappers. With zappers, it's mostly a one-size-fits-all approach with a frequency which is destructive to pathogens. With the Hulda Clark zapper, one can get little program chips which cause the zapper to emit a descrete frequency specific to one type of pathogen.

    Rife machines not are able to emit the whole gamut of destructive frequencies but they are also able to test for infections from specific pathogens. These machines are sophisticated and use computer programs. Most of these types of machines hook up to one's computer.

    These machines usually cost thousands of dollars and are mostly used by healthcare professionals. My zapper was only $150 and has worked very well.

    In either case, these machines work on the same principle and will kill pathogens in the bloodstream. The ability of the Rife machines to diagnose may be much better than lab tests when it comes to infections, especially stealth chronic infections.

    Love, Mikie
  12. robertin75

    robertin75 New Member

    Hi Mikie:

    Which brands of probiotics, colostrum and transfer factor are you using?

    Thanks,
    Roberto
  13. morningsonshine

    morningsonshine New Member

    I spoke to a lady on the phone from FFC, and asked if they cure CFIDS. She specifically said no, they said it goes into remission. So i neither, have heard them make no claims about curing these DD.
  14. Bambi

    Bambi New Member

    website either yesterday or the day before and I thought they say that they have "cured" FM patients. It could be a case of the fogs so I will go back and check again. I then wrote them and asked them what lab they use. As you indicated, they said Quest. Which I also put into search. WOW! They are not just BIG but HUGE! They are very involved with HMO's, Lab Cor, the govt., the VA and lots of other organizations. I have nothing against them one way or the other except the cost.

    At the same time with all the flack we've all had with the govt, HMO's and others over whether these are real dd's or not..I am HOPEFUL that it is not a form of guinea pig thing and I'm NOT saying it is. It's just a lot of different and unusual treatments and in most cases the jury is still out on the long term value. I'm open minded and will wait and see.

    I HOPE in time it will prove to be the greatest thing since this support board..I want to see EVERYone rid of these conditions and everything that comes with them. I still remain a little bit sceptical but that's mostly because of so many that have come before that seemed so
    hopeful and then went by the wayside.
    It LOOKS like it's going to help many, I just want to see how it goes
    a year and two years down the road.
  15. orachel

    orachel New Member

    My goodness. Its your body, your healthcare, and you have every right under the stars to be skeptical! LOL

    So many of us have tried new scripts or treatments, only to get excited about the relief they will bring, and then been let down again and again....

    Believe me, I understand the "jury is still out" mindset!

    I'm that way about so many treatments. You just can't get sooo excited that something will make an amazing difference for you, and then get slapped down again and again. I'm one of those patients....my heart has been near broken when drugs that make some of us feel so much better...tramadol, cymbalta, provigil...etc etc...leave me feeling worse, if anything. My heart has been broken one too many times.

    However, while the FFCs are relatively new, much of their treatment protocol has been used for everthing from FM and CFS to allergies and chronic sinus infections for DECADES, successfully, for the most part.

    There have always been clinics (like the Lifeworks I attended in Florida...oh, must have been about 6 years ago) who stress the importance of diagnosing dormant viruses and food intolerances (often with kinesiology or diagnostic machines) and testing for imbalances in hormone levels etc in the body...and then treating these dormant viruses, and imbalances in the body with supplementation, Iv therapies and antivirals, as well as immunoboosters and tailored diets to avoid the food intolerances.

    I know that the FFC is knew, and I know that the docs who pioneered these centers are amazing and should be commended for their 'whole body' multifaced approach to treating what ails us...

    Much much of this medicine is not new..at all. Wellness clinics, DOs and many other full body wellness practicioners have been singing the praises of these treatments for many many years. So, in my opinion, the FFC's approach has been tried and true for quite a long time now. While they are pioneers, they're walking a path that has long since been established for the treatment of many diseases and intolerances, and only "tailoring" it to treat the common issues with FM, CFS, and MPS...and as elsie has said..they do treat many other things as well.

    As for the term "cure"....can anyone ever truly say they've been "cured" of cancer? No, but in many many cases, after 5 years of remission is attained this word is used. As for myself, if I went from feeling like sick on toast to feeling vibrant and healthy again (yeah!!!!), and that healty feeling lasted for years on end...I'd probably refer to myself as being cured.

    We do all have to realize that there will ALWAYS be a wellness protocol we have to follow for the rest of our lives if (when!!!) we do attain true health again. Toxic diet, stressfull life, and 6 mos we're back where we started. UUG>

    Anyway, I hope that gave some of you ideas that some of the treatment plans used by the FFC...their overall treatments style, if you will...has been in use for many many moons by wellness workers across the country.

    Would I prefer it if FFC had been putting people into remission for 50 years before I go? Of course I would! But quite frankly....I know I don't have 50 years to wait and see before I grab the best treatment option available to me.

    Of course, this is all just my opinion, based on my experience with another whole body wellness center, so I sure don't mean to step on anybody's toes. But the reason I have so much confidence in the FFC's approach is that so MANY of the same treatments they use have been integral to my health in the past. Does that make sense?

    Wishing all of you a good day. I'm off to see a NEW MD today....hoping he can make a modicum of difference for me. I can't allow myself to get too excited, though...only to be let down again. But I'll go in with an attitude of cautious optomism.

    Hugs to all,
    Rachel
  16. Bambi

    Bambi New Member

    that we won't be here in 50 years bragging on it! LOL! Well..it could happen. Maybe we'll end up stronger than the "normals" after all we've been through!