FFC users - should I use drugs or not? please advise?

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Nov 10, 2005.

  1. Shannonsparkles

    Shannonsparkles New Member

    I'm going to the Seattle FFC on the 21st. Trying to make up my mind about what treatment to get there. Whether to add some of the drugs they commonly use, or to get them to do only natural treatments with me.

    I've been told that I'm very sensitive to any medication, or even intollerant. Besides that, medications always seem to have some bad side effects, or are hard on one organ or other, or are discovered to cause other health problems even years after they have been approved for the public.

    On the other hand... they do seem to do what they are meant to do, even if they may cause other damage in the process.

    Dr. Marti said we could go the drug-free route with me. I just wonder if I would be passing up something useful if I didn't give the medications a try. Does it make a big difference what I choose, or is one way as good as the other?

    So what do you think? Has anyone else resistant to using drugs worked witht the FFC, and what has been your experience? Have you had a very good experience with drugs that they could share? Is there anyone who tried everything else and then found that a medication does the job best?
    What do you think I should do? Thank you so much!!!
    ((( ))) Shannon
  2. intrigue

    intrigue New Member

    I understand completely. I also tend to have bad side effects from drugs. And I think you should be cautious about what drugs you put into your body. That being said, when I decided to go to the Dallas FFC, I decided to follow their protocol as prescribed (to the best of my ability).

    The people around here singing the praises of FFC are the ones who did the entire protocol.

    First, the FFC is going to give your mostly natural supplements. You can buy those from the FFC, or on your own. Keep in mind that "natural" remedies can have side effects too.

    Secondly, your doctor will prescribe treatment based on YOUR results. You could ask everyone on this board which drug they think was a miracle for them ... and you'd get many different answers.

    My personal decision has been to avoid prescription pain pills. Nothing I am doing at the FFC is going to be a "quick fix" and I am OK with that. I feel that anything ANY doctor can give me today thats going to make me feel better TODAY will be temporary at best. I want a long term fix.

    Before I went to the FFC, I saw two Rheumy's in my area. Both wanted me to take pain pills, sleeping pills, and basically "live with it" "There's nothing we can do." I was not satisfied with that prognosis. Hence, I have decided to do the FFC protocol full throttle.

    Now .. are there days ... when my tummy is swollen and bruised from the heperin injections that I don't question my decision? Sure! But I can always look back through my lab results ... and I can read about my treatments on the internet and I can be re-assured this is the best thing for me to do.

    Ultimately, you have to decide whats best for YOU.
    Hope this helps,
    Ellen

  3. karatelady52

    karatelady52 New Member

    A lot of it depends on how sick you are. If you can get through your day without pain meds, go for it.

    One thing you may keep in mind is that when you begin to herx (say they find out you have viruses, etc.) you will feel a little worse before feeling better. I found I needed pain medicine to be able to function while herxing.

    I've also heard the older drugs (narcotics) are less stressful on the liver -- like Oxycodone, Vicodin, etc. --- someone correct me if I'm wrong. I take a low dose of Oxycodone and haven't had any problems with it. Just start low (even half the first one) so you can get used to it.

    Sleep is VERY important because your body will have a hard time healing without the deep sleep it needs. So, if your struggling with that, its good to get some help. My doctor put me on Xyrem and I've had wonderful results from that medicine. I was very leary of taking it at first.

    It would be good for you to share your concerns with the doctor but then take his/her advice as far as the meds go.

    Sandy
  4. kbak

    kbak Member

    Hi,
    When I went to FFC, I told them I wasn't comfortable using pharma drugs, and would like to be treated as natural as possible. Well natural has never worked for me for my insomnia. My insomnia was causing me to be much sicker than I needed to be. So, I am taking neurontin, at nite, to get my overactive brain calm down and help some of my neuralgia.

    Everything else I do is natural. Just talk to them about how best to treat you, and your concerns about natural vs. drugs. They will help you make an informed decision.

    Good Luck!
  5. elsa

    elsa New Member

    Hi Shannon,

    Not FFC but have followed a very similar treatment plan. Only you can make the decision about what to take .... It has to be something you are comfortable with so that you will stick with it.

    I just wanted to add a couple of things to think over while you make you decision.

    The FFC's plan is for you to take rx medications while the other treatments are doing their thing. Yes, they "mask the problem", but by the time you are doing treatments at the FFC, you KNOW what the problem(s) is and are treating them. There's no point in suffering needlessly during that process.

    Also, I call them "quality of life" drugs. I would like to have one ... LOL, I know what is wrong with me and we are addressing the probs as best we can ... I have found that I need less and less of some of my meds as the treatment days go by.

    As for sleep medication, I am a little different. It would have been nice to not have to take lunesta every night, but I may be on this rx forever. It all comes down to my sleep disorder and what helps it and what makes it worse. I honostly can say that it's O.K. with me ... I so don't want to return to life without effective sleep.

    Depending on what they find, you'll probably be on some rx'es anyway, IE anti-virals, abx, rx compounded hormone replacement, etc. Just try to keep in mind that their goal is to fix the pathogens and bring the rest of your systems into balance so that you don't have to take drugs forever.

    I wish you well on this. Deciding on one's treament plan is a tough one, but will be well worth it once it's in place. If you cannot take something because of your body reacts badly, then there isn't much you can do about that but move on to the next choice.

    Also remember that natural treatments are considered drugs too... there will be side effects. Anything that goes in, even O.J. is going to have a side effect. The trick is to evaluate all the medication information as well as your health and your treatment goals and make your decision based on the above.

    Good luck, Hon. It's daunting to make your decisions, but soon you will see the benefits and feel good about yourself. You have surrounded yourself with experts that believe in you and the illnesses you are trying to treat .... You will get better.

    Take care,

    Elsa
  6. zoose

    zoose New Member

    Since I was symptomatic for 5 years but only recently diagnosed, I have been trying to treat the symtoms by alternative means. This might change after I finally get to see my new rhumy in two weeks (I can't believe the waiting list to see him, but I digres). I try to deal with this without drugs as much as I can. When I get a new med I go to the web site and download the piece of paper that is supposed to go with it ( you can also get this from the pharmacist). I go through the contraindications and reactions section and watch for any adverse reactions in myself. I have had bad reactions to many meds even in small doses. As soon as I have a bad reaction I stop the med and see the doctor. I also look for alternative solutions. Don't forget that meds come from plants so herbals can have bad side effects also. Another thing to remember about herbals is that they are uncontrolled so the dosing isn't necesserily the same even from pill to pill in the same bottle. For this reason I tend to stay away from them. I do use homeopathics once in a while and they seem to help.

    Things I have done to reduce pain include yoga, meditation and swimming. However, these take time to kick in. I have a very good yoga teacher that practiced with BK Iyengar and has learned how to use yoga as a healing tool. I go to the mind body clinic that she runs which is quite different from what westerners consider yoga to be. I have learned how to breath from her, called praniyama. There is one breathing technique that even reduces anxiety. This has been tremendously helpful but I still have bad days. On the bad days I resort to asprin. I was on vioxx while it was on the market and that helped tremendously with no adverse side effects for me.

    I found I had a wheat allergy. Now that I have been wheat free the IBS symptoms have been reduced drastically. Check for a food allergy! You might be sensitive to soy, eggs or milk. Wheat is the most common. Get tested for celiac. This a common allergy to gluten which causes IBS type symptoms. None of my doctors even suggested this. It was my nutritionist that made this suggestion which turned out to be true. Then my doc tested me for celiac which came back negative.

    For sleep I found that the health of my sinuses are vital. I sleep better when I can breath (go figure ;-) ). The head of my bed is now raised and I use a neti pot daily. A neti pot is used to rinse the sinuses with salt water. I know this sounds gross. I even call my neti pot my snot pot but it works! I have found that this works for me as well as Rhinocort without any side effects at all. If I get sleep meds from the rhumy I will give them a try. If I get side effects I will stop.

    The biggest thing is to trust your body. Listen to what it is telling you. Is this treatment helping or hurting? I just read about the Feldencrantz (sp?) method. I figure it can't hurt to give it a try. Who knows maybe it will help.

    Take care,
    zoose
  7. dancingstar

    dancingstar New Member

    I had my first visit at the Los Angeles FFC earlier this week and have nothing but the highest of praise for the way that Dr. Holtorf took my feelings into consideration in deciding what medications to prescribe for me.

    We decided on a combination of things, mostly what I was currently being prescribed by my internist, with a slight modification. He carefully listened to me as I explained why I didn't want to take most drugs and preferred opiates to the newer pain meds and easily understood that antidepressants and the like were, in my case, completely out of the question.

    He recommended a basically all-natural program for me with the addition of a pain medication that he felt would be more effective than the one I was currently taking and something to help prevent my body from becoming from dependent on the pain meds and also to cut back any reaction that they have on my body other than to specifically relieve pain, the one thing I need it to do. Since I've been taking them in small amounts in one form or another for four years now, I was overjoyed to hear that there was such a thing!

    I doubt that your doctor will push you towards taking medications that you feel uncomfortable with...and I guarantee you can get well without taking drugs that you truly don't want to take.

    I'm assuming that if someone suggests that you take something to help rid you of a bacterial infection or a stealth virus, you will give that a go, as I would, and most happily.

    I have to agree with others that have said that the treatment will work best, though, if you are not in a tremendous amount of pain while you are going through it. Your doctor will help you to decide what to take so that the levels of pain are not too uncomfortable for you. Please don't worry, I am sure that you will work together to come to the right choice for you.

    I do have one question: Is there a specific medication or medications that you are thinking of? Maybe others here can help to answer your question if they have taken the medication and can give you their own experience with it.
  8. Shannonsparkles

    Shannonsparkles New Member

    most is antiboitics. Just don't want to use them. And sleep meds, because once you go that route, don't you need sleep meds forever? (Correct me where wrong please!) What bothers me with the antibiotics is that it suppresses the immune system, and if you take them for a long time it causes real damage to it. You fix one problem, just to cause another serrious one farther down the line. Plus, with drugs, we don't know yet what all they do in the body. It's just NOW that we're learning that antibiotics kill the good bacteria along with the bad, and we that need to take probiotics with it. Plus it kills good bacteria in the cells that we didn't even know we needed and that probiotics can't make up for. Is your doctor going to tell you this? No! It's not unrealistic to anticipate the same kind of things being learned about other drugs. I mean, doctors used to reccomend SMOKING to pregnant women to help with their morning sickness. And then there's what's comming out now about hormone replacement therapy and breast cancer, or aspartame (originally made to be an ulcer drug) and brain damage. Our understanding of how chemicals act in body is in its infancy.

    BUT, if it was something that was fairly safe, I would do it. I want to use everything I can to help myself. If a drug is way superior to the natural version of it in how effective it is, I would go for that. Particularly if it was short-term and I didn't need it for more than a few months. But man, anything else first!

    Thanks for the replys. Anything you write is helpful. I'm thinking about asking the FFC to send me a list of medications they commonly use so that I can research them before I go and see which ones are safest in case I need them.
  9. elsa

    elsa New Member

    I'm not sure where you heard you would have to stay on sleep medication for life once you start them, but it isn't the case. I take lunesta ... sometine 2mgs, sometimes 1/2 that. Sometimes not at all ... It doesn't hurt me one way or the other.

    My sleep disorder is controlled with lunesta, but I am not chained to it forever.

    The "natural" alternative made my sleep (REM) worse. 5-HTP, Gaba, L-theanine all suppress REM to a degree. The rx is better for me. Although life would be simplier if that were not the case.

    If I had to take long term anti-biotics to help push my CFS/FM back into remission I would do it. You have to weigh both sides. It would be more physically damaging to all my body systems to allow the mycoplasms or lyme to continue about their merry way then taking a long-term abx therapy.

    With the abx I would lose SOME, not all of the good bacteria which can be easily replaced/restored with yogurt or probiotics.

    The list of bad, damaging things with untreated lyme is much longer and much worse then the list of bad things with anti-biotics.

    There is everything wonderful about researching rx'es and natural medicines. Please don't get so worried about what might happen twenty years from now. Our illness is incidious and needs to be treated with whatever is best at blasting back into remission.

    You are not turning down abx treatment for the common cold. You're trying to get your life back.

    If we try hard enough, we will find something unacceptable in every possible treatment that's out there for us.

    Licorice root is a well studied natural anti-viral, but not risk free. It can raise blood pressure. It can throw the sodium/potassium balance off because it causes sodium retention.

    Two very common natural sleep aids are not certified risk free. Passion Flower could be very toxic to people taking SSRI's Tricyclic AD's and MOAI's ... Valerian Root works on the same receptor site as benzodiazepine drugs so if you are sensitive to these drugs, valerian might cause you risks. Also, valepotriates are suspected of being carcinogens as well as liver toxicants.

    People successfully use these natural medicines everyday of the week with no problems, but they do have risks and some people cannot take them at all.

    I didn't share this for shock-value ... Just want to be sure you understand the are risks to be considered with any treatment. No guarantees for a free hall pass because it's natural.

    I hope you weigh all the reasonable facts on everything rx'ed for you (prescription/natural) and then hold those risks up against your life with CFS/FM. Which one is the devil in black?

    Good luck with this. You and your doctor will come up with a plan that works for you and then you can start getting better.

    Elsa

    PS As your hormones will be checked at the FFC, please look into more information about HRT. The synthetic estrogen and provera (synthetic progesterone) are the type of HRT implicated in breast cancer.

    Natural, Bio-Identical progesterone protects against breast cancer and a 2002 study showed it inhibits the growth of endometrial cancer cells. It also reduces the risk of osterporosis.

    Bio-identical HRT is loaded with anti-aging, protective and preventative things. Great for us!
    [This Message was Edited on 11/12/2005]
  10. intrigue

    intrigue New Member

    I can absolutely agree with you.

    But ... remember two things :)

    1) The FFC is only going to prescribe antibiotics if they FIND something that needs to be treated (like Lyme ... which as Elsa said would be far worse untreated).

    2) Remember natural and herbal treatments are completely unregulated by the FDA. We don't know what the long term consequences of using them might be either.

    For me, I haven't tested positive (yet) for something that requires antibiotics, so I'm not on them. I would take them if I test positive for Lyme or something like that.

    I will only use sleep meds as a last resort. Right now, with the supplements I am taking, along with some diet and exercise changes .... I have been sleeping better (without a specific supplement or drug for sleep)

    Lastly, the FFC's seem to have a healthy attitude towards getting you better to get you OFF the pills.

    -Ellen
  11. sami

    sami New Member

    i can't speak for the ffc on meds...but i am in the med. profession and you will not get addicted to sleep meds or even pain meds for that matter if your body is using them correctly....i used to see dr. jay goldstein in california and his whole protocol was based on meds..he is convinced this is a neurologic disease at its beginning....the point is, i trialed on and off over 100, thats right over 100 meds and now i take very few......you must listen to your body...i was diagnosed in 1989 and had it before that...jay saved my life in around 1994 i think...i could barely get off the plane with my dad's help, and in 2 days i was running on the beach in newport!!!!!!but my body gets resistant to different treatments and it is like starting all over again each time i try something new..i am older and wiser and more experienced to know...THERE IS NO MAGIC BULLET for this dd.....i am planning to go to the fcc in awhile....if they can truely find the cause of the problems, and fight them one by one and eliminate things, that is great progress!!!!!!!i have tried everything, from classical medicine, to downing over 50 different herbal pills a day...where i had to meet this biochemist in the lobby of a hotel and slip him a check for $500!!!!
    go with your heart...and give it all a good try..but not to many things at once or you can never figure it out..i am currently on the guaifenesin protocol and hope it goes...overall i still wax and wane and i am convinced i will have fibro/cfids till the day i die..i just want to be able to enjoy my days more, now that i finally have gotten rid of my abusive husband and have a darling man in my life..i thought my life was over many many times, but i am encouraged now more than ever to feel better...do not cheat no matter what you are on..it is cheating ourselves!!!!!!and yes, yoga and stretching are the best!!!!~!!!
    good luck to all..i am always in touch....
  12. dancingstar

    dancingstar New Member

    I read an interesting article about hormone supplementation in the newsletter put out by my internist. In it he says that the final report in the "important" study on estrogen and breast cancer was released in late 2004 and that it indicated that there was a 22 percent decrease in breast cancer in women in their 50s who only used estrogen.

    He also goes on to say that there have been ten studies in which women who have been diagnosed and treated with breast cancer were given estrogen therapy. In nine of these studies, the breast cancer survivors who received estrogen reported enjoying a better quality of life and had fewer breast cancer recurrences than those who received the placebo sugar pills.

    I'm horribly allergic to many antibiotics, but doxycycline happens to be one that I can easily tolerate without it causing me many problems at all. I've known for nearly all my life, though, to take acidophillus (sp?) whenever taking antibiotics.

    A lot of the treatments and medications that FFC are using aren't really new. What is different in my opinion is that they test to find the underlying cause of our pain and treat that problem in every possible that is known to work.
    These aren't really experimental treatments at all. There are plenty of doctors that support these treatments for all kind of other things, but unlike FFC, few of them specifically work with fibromyalgia/chronic fatigue patients.

    One last thing, let's not forget that there were a lot of people that used to believe that the earth was flat. Something has to change cause too many of us have been in pain for too long. Thank God someone is working to help us. I truly think anyone that questions what they do should go there to see for themselves.



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