Detroit FFC Herxing?

Discussion in 'Fibromyalgia Main Forum' started by SweetieLF, Aug 22, 2006.

  1. SweetieLF

    SweetieLF New Member

    Hi Everyone;)

    I was just wondering if anyone goes to the Detroit FFC with Dr. Mustafa? I just had my 2nd visit today and I had my 2nd Back/Muscle IV and Energy Shot........

    I feel TERRIBLE!!!!! All last week after the first round, and today after my 2nd.....I feel like I have the worst flu ever, and been hit 20 times by a mack truck!

    My muscles, joints feel like they're on fire, my eyes are burning and watery, my stomach is nauseous, I have a fever, my head hurts, I have this salty/chemical type taste in my mouth, my skin is irritated/itchy/red, and I just feel like every pore in my body - even my hair - is leaking some sort of nasty, salty chemical/metal that smells like rancid tomatoe soup??????

    I just started feeling better yesterday over last Monday's IV and energy shot, but today I had to get my 2nd set, and although this "reaction" took half a day longer to FULLY descend on me (last week it happened while I was still even getting the IV), I just want to know if anyone else has/had this reaction?? It's torturous and frankly scaring me.

    I've only started taking the Multivitamin Supplement the FFC gave me as of yet - I have a bag full of supplements to still start taking - but a multivitamin wouldn't be doing this.......

    I haven't gotten my blood test results back yet, so I'm not yet on any hormones, anti-virals, anti-biotics, etc, yet........so it can't be reactions to those.......

    Dr. Mustafa so far said that I have a huge yeast overgrowth, hypothyroidism, probable hormone imbalances, and she suspects some type of virus like Epstein Barr, but we are still waiting on the blood tests results.

    I just really want to talk to other FFC'ers.........this is all overwhelming a bit........Thank you for your replies!!!!! :) :)

    God Bless, Laura
  2. marmayer

    marmayer Member

    It`s been a while since I had a back/muscle IV but I didn`t have any of the symtoms you are describing. It usually knocked me out for about a day. We drove from SW Ohio to the FFC in Cleveland. I would sleep most of the way home each time, just felt exhausted. My herxing was with a 6 month course of diflucan-my mouth had so many sores I could barely eat.

    I now go to Detroit FFC-only been once so far. Went to Cleveland for a year. Good luck-I am so much better than I was!!! Marian
  3. place

    place New Member

    Up until June she was with the FFC, now at her own practice. I had an IV, and fortunatly, my dad drove me. I had the same symptoms you did. I have my 3rd apt on Monday, I am driving myself (over 2 hours), so I can't get that treatment. Some regards, I feel like I'm dodging a bult on the other, I miss out on a potential helpful treatment.
  4. munch1958

    munch1958 Member

    Hi Laura (Sweetielf):

    I'm a Detroit FFC-er. I had a nasty red rash from the first Memory IV. We think it's because I'm corn intolerant. They ordered all corn free IV products for me to try. I did not get a rash from the 2nd or 3rd memory IV. They load me up with Benedryl before getting IVs and it seems to help.

    My last in person visit was mid July. During that visit I got the Anti-Viral IV for the first time. I could smell the IV in my sweat, in my hair, and on my breath for days! I could not get out of bed for 2 days after getting this IV. I have CPN, EBV and Candida problems.

    I live in central Illinois and so far think it's worth it to make the 2 day trip to Detroit. Hang in there! You will feel worse before you start to feel better. I've been going since March and feel like a different person.

    I am overjoyed with the results. It is expensive but in my opinion worth it. There is no dollar amount that can be placed on your health. Every one tells me I look like a new person and I sound like a new person too.

    The fatigue was so bad -- I was going from my bed to the couch and back again. My daily To-Do list consisted of:

    1) making dinner for my family;
    2) loading & unloading the dishwasher;
    3) feeding my rabbits down in the basement.

    I was too tired to make more than one trip down one flight of stairs. I had no motivation to do anything. Now I'm frustrated because I barely have time to fit in everything I want to do in one day. (I've posted my picture and FFC test results in my profile.) I'm back on my 18 year old bicycle riding about 12-14 miles per day 5-6 days a week. I have lost 30 pounds and would like to lose another 10 or 15 pounds.

    I am a long time CFIDS/FMS sufferer (25+ years) and the former president of the Chicago chapter of a well known endo self help group. Many of the things the FFC does I had already tried but never so aggressively and never in the combination that they use. None of my underlying infections (see my profile for complete info) have ever been addressed either. I had not realized the candida I thought I got rid of in the early 1980’s and again in the mid 1990’s was back in full force. I should have known better!

    Since 1991, I have been seeing a great alternative doctor in Wisconsin Dells. He was never able to put all of the pieces together the way the FFC did in my case. I was taking Armour thyroid but that did not address my high levels of reverse T3. I have thyroid resistance and in spite of being on medication my body was not responding the way it should.

    Getting on bioidentical thyroid or compounded T3 has made a huge difference for me. I no longer feel as if I got run over by a truck all day every day. My only big setback during the past 5 months of FFC treatment was when my compounding pharmacy sent me porcine thyroid (Armour again!). My insomnia, migraines, IBS, joint pain, bone pain and muscle pain came rushing back in only 3 days.

    I had also addressed HPA hormone issues in the past and used small doses of hydrocortisone. I was also using B-HRT (estrogen, testosterone and progesterone) but still not feeling great. Without all of my hormones working together I simply felt awful. I stopped having periods at the age of 39. I have my menstrual cycle back and my libido is also back.

    My most important advice for beating FMS/CFIDS is to stop searching for a quick fix one size fits all solution. There is no magic pill you just have to keep uncovering things that are not working right in your body and fix them on step at a time. It’s a HUGE puzzle and there’s probably more than one disease process at work here. That’s why they call CFIDS/FMS multi-faceted syndromes.

    There really isn't one easy answer for everybody. I’ve been chipping away at this since 1981! The most critical things you can do for yourself are lifestyle changes. If you can’t afford to go to FFC then you can still do some of those changes on your own.

    Get some deep sleep anyway you can. If you have to take a prescription sleep aid (like I do) so be it. I take Ambien CR, FFC’s sleep supplement, melatonin and 5-HTP. I’ve tried every sleep aid on the market over the past 40 years. I was a night owl but with the help of my FFC doctor I have retrained myself to be a day person.

    Pain - that's why we have narcotics! Get pain relief any way you can too! I've been a patient at a pain clinic since 1997. I've tried almost every narcotic there is too. Before my knee replacement, I was taking huge doses of Oxycontin (time release Percocet). By getting regular exercise and some deep sleep eventually your body will make endorphins. Those are pain killers that are far superior to ANYTHING in a bottle from any doctor.

    Figure out if you have food intolerances and/or a candida problem by following an elimination diet for 4 days. If you feel worse the first few days and then suddenly better by the 4th day than what you are eating is poison to your body. Figure out what “IT” is and eliminate it.

    My mental clarity and cognitive abilities improved after just a few days without grains, soy and milk products. I knew I was on the right track. 4 days is not such a long time compared to the years I was bedridden and not functioning.

    I started out on Nystatin and then completed 30 days of Diflucan then went back to Nystatin. I have an RX for liquid Nystatin in a Lydocaine base for a sore tongue problem. If you have a white coating or rash on your tongue you probably have a yeast problem. I did not have the typical vaginal yeast infections either.

    My recent follow up tests show that the candida is still a big issue for me so I’m going to do an additional 60 days of Diflucan while continuing to taking Nystatin. Dr. Mustafa feels that both medications are necessary because they have different paths of action to kill the yeast. I am not nearly as sensitive to chemicals as I was when I first started going to FFC but perfume and tobacco odors still bother me.

    I have been taking antiviral supplements (Vitamin D, artemisinin, Lumbrokinase, Gamma Globulin and FFC’s antiviral supplement). Yes, I have had Herx reactions from just about everything they’ve given me but I feel I have no choice but to push onwards to overcome the infections.

    I’ve been on long term antibiotic therapy for 4 months now and plan to stay on it for a total of one year (Doxy made me photosensitive in sunlight so I switched to Minocycline). That might make it harder to beat the Candida but I am convinced my long standing GI problems are due to some sort of mycoplasma. The FFC does not do PCR testing for mycoplasma. I had one positive band for Lyme disease but tested negative through the Igenex test.

    One of the most important things I have done for myself is to have some quiet time when my brain can relax. I have reduced the amount of time I spend watching TV, listening to annoying radio stations, and enduring background noise. There is no doubt in my mind that this is a neurological condition and anything you can do to reduce your brain overload is helpful.

    I have never been a passive participant in my health care. This means that I do not go to a doctor and expect them to fix me. I am my own health care advocate so I do my own research then make decisions based on what I’ve read. This means researching my conditions on the internet, reading as much as I can find, making phone calls and traveling to other states. I made 3 trips to Pennsylvania to see a top endo surgeon in the early 1990s and was able to cure my stage 4 endometriosis.

    I highly recommend exercise to anyone with CFIDS/FMS. I began with 1 minute on an elliptical trainer then worked my way up by one minute a day to where I am now. The first 3 days, I thought I needed to call an ambulance due to chest pain and shortness of breath. I have costochondritis (chronic pain around the chest bone and ribs). That seems to be a recurrent theme on this board.

    My asthma inhalers never left my pocket, purse or glove box but now I barely need those. I have taken drastic steps to reduce my chemical exposures. I eat only organic food whenever possible. I no longer use perfumed products of any kind. Everything I buy is unscented. My asthma has not magically disappeared. I need Albuterol to deal with exposures to petrochemicals (perfume, gasoline, kerosene, chlorine, etc.) but it’s much better now that the underlying CPN infection is being treated.

    Nor do I need the migraine medication I used to take by the box. After changing to compounded T3, I no longer hurt all over. I had pain in my neck, shoulders, left hips and lower back. I did 6 weeks of acupuncture with a chiropractor followed by a month of physical therapy for chronic hip pain from a bone marrow biopsy. I also did massage therapy and started doing yoga for relaxation.

  5. marmayer

    marmayer Member

    I saw Dr J at Cleveland for a year-what`s the reason she left? I was so depressed when I got the letter. Is she following the same protocol? I switched to the Detroit FFC but might consider going back to her. Charges? Insurance?

    Cleveland is a 4 1/2 hour drive and Detroit is a 5 hour drive. Please let me know what`s up! Thanks! Marian
  6. ckahele

    ckahele New Member

    oh yeah...it can be bad.
    but hang in there--it really will get better.

    I felt horrible for about 4 months then really noticed a difference day by day.

    Now I'm humping furniture thru the humid streets of philly to help my daughter AND CAN STILL STAND THE NEXT DAY!

    Just remember, you are on the right path...GOOD LUCK!
    Cyndy
  7. ckahele

    ckahele New Member

    Awesome post dear!
    When you write a book I'd like a copy please.
    Cyndy (Pittsburgh FFC)