How many others go the the Philly FFC?

Discussion in 'Fibromyalgia Main Forum' started by jane32, Jan 7, 2006.

  1. jane32

    jane32 New Member

    Have you met with the new Dr.? What do you think? Also, if you needed blood work to check your new levels do you get it down before your next appoitment so they can go over it or do they check it then and the appointment and just call you with the results?
  2. goaska29

    goaska29 New Member

    I haven't met the new doc yet, but I have an appt with him this Thursday morning. I will report back a.s.a.p. afterwards.

    I WAS doing the over-the-phone distance plan (I live in Washington, DC...about 3 hours from the center). But when I called for my lab results the other day, the receptionist told me that she was unauthorized to give me the results and I'd have to make an appt with the doc. I took that as bad news, so I made an appt in person. They had no problem telling me my results over the phone before, they even faxed me copies. But this was the infection panel with an IGeneX lyme test too.

    I'm very anxious to get the results, I'll let you all know Thursday afternoon.

    -GoAskAlice
    [This Message was Edited on 01/10/2006]
  3. jane32

    jane32 New Member

    They won't give me results before either. Does she know you are long distance though? The infectious panel does take awhile to go over not as long as the second piece though. I am sure it is fine and whatever is there they can treat!

    By the way that is such a cute picture you have up! It seems you are young like me-doesn't this suck??!

    Mine started like the flu for like 6 weeks too last year.
    [This Message was Edited on 01/10/2006]
  4. goaska29

    goaska29 New Member

    Yes, I looked at your profile (GORGEOUS dress btw)...and we're only about 7 months apart. It's extrodinarily difficult to be this sick at this age. I was just starting to excel at my career, just moved in with my boyfriend, almost finished grad school, and then it all came to a screeching halt.

    I just hate that the symptoms keep changing on me. I feel relatively ok one day, then practically on my deathbed the next. I'm confident that I have Lyme, but I almost don't know what to do if they say they still haven't found anything. What have they told you so far?

    -GoAskAlice
  5. jane32

    jane32 New Member

    Yes I had just started a second business in the wedding industry, rising very far with my wedding planning business and finishing my last two semesters of grad school for Psych. Then I began to feel really tired after the holidays. I just thought it was stress and I kept plugging away b/c I had so much going on. My brother was caught up in a an awful divorce. My sister-in-law kidnapped my nephew for three weeks. I never experienced something so crazy in my life. A few weeks after that I got a flu bug and my temps just were still high. I kept going to the dr. and they were like its a virus. after my 5th trip they told me it was in my head and I was fine. Well I then ended up becoming my own dr. I saw over 22 specialists, had every medical scan, and two finally diagnosed me with CFS. I was then referred to the FFC center.

    I went from having the best life to one of the worst! I use to have so much energy(way more then others!) and now I have none. I hate that I can't predict how I will feel.

    I have low NK cells, Low T3 but high reverse T3, EBV, low salt intake-vitamin D or something and candida.

    I started taking Fatgiued to fantastic drink mix in Oct. (gross but helps after about 2 weeks) every day. I also take NADH (10 mg) in the morning. Wonderful stuff. These two things were recommended by one of my other drs. not the ffc. I then went on T3 up to 50 today, proboost 3 times a day (definitely helped), Valtrex-3000 mg a day, NT factor (4 pills a day) and melatonin at night. I just started the Transfer Factor- I am taking it slow. I still have tons to add but I like to know the side effects of things so my recovery is probably much slower then others. I also did some research on ginseng, Co-10 and coconut oil and plan to add them in the next few weeks for energy.
    I guess everything is trial and error. I really believe I will get better but somedays I just feel like such a lazy bum. Are you able to work? I just work my business from home to keep myself involved with something. I also do tons of reading on CFS.

    My husband and I only got married last year so our life has not been too much fun. I just want to be like other couples. Our house fund went to medical bills and now we are back living with my parents. I want to have children someday too but I don't know if my body will be able to handle it so we may just have to adopt. Plus, I can barely take care of myself let alone another human being. But I can't imagine a life wihtout a family.

    You must have a really supportive and great boyfriend.
  6. goaska29

    goaska29 New Member

    Many of the frustrations you've conveyed sound so similar. My boyfriend and I actually started dating about 3 months before I became very ill. It was like one day I was partying, going to school, working full time, snowboarding, working out, etc, and the next day I couldn't do anything more than make it to the couch. He is AMAZINGLY understanding. I have no idea what I did to make him want to go through all of this with someone he only knew for a few months. We've only been together for about 14 months now, but he tells me almost every day that he'll be here no matter how I'm feeling or what doctors say. When he says that, all I can think of is how much I want to be a normal couple like you said. We had SO much fun in those short months before I was sick, i just feel awful doing this to him too (as I'm sure you feel for your husband).

    I also share your fear of having children. So many of the other people on these boards have already raised their children...what of us who haven't? I'm also afraid of passing on whatever I have onto my child.

    Ugh, anywho...as for now. I am not able to work full time. My boyfriend has an internet business (on top of his 9-5 job) so I try to help him out with that from home. I also have a former co-worker that went out on her own that occasionally asks me for help on her projects. She pays me as a consultant, so it's something. I was very driven before this, so I share your "lazy bum" feelings too. Watching all my friends get promotions, graduate law, med, or grad school, get married, travel....it's so hard now. I've never been a jealous person, but now I find myself incredibly envious of anyone who can get up at 7am and feel normal.

    So...I am also on the T3 med (currently only 15mcg), ProBoost, I drink Stormskye's shake every morning, I'm on the Pill for low estrogen (the birth control part is just an added bonus), Engery Extract, and lunesta to help me sleep. I have no idea if anything is working because my symptoms are so up and down....one day I'm virtually "normal" and other days I'm flat on my back...with no change in diet or supplements. I'm hoping this infectious panel will reveal something.

    So, this is LONG winded already....but if/when I get married, you're the first person I'm contacting about a dress!:)

    -GoAskAlice
  7. Frecker777

    Frecker777 New Member

    Hey Jane,
    I go to the FFC, but like Angela, have yet to meet the new doc—but have heard good things. My appt is next week so I will certainly post my opinions come time—the old doc was OK, but I don’t feel I have made much progress. I started going to the center in July 05’ and have gone through the gauntlet of diagnoses (thyroid, Candida, low immune function, high EBV antibodies)—similar to what it seems all who go there show up for. Anyway, most of the therapies have been either unhelpful or detrimental. Most recently I showed up positive for lyme, so I have been on that protocol for the past two months. Again, not much progress so far.

    How many times have you been to the FFC in Philly? What do you think so far?

    And just to butt into the boyfriend and CFS conversation—since being sick for a few years, I feel socially inept and cannot imagine meeting a guy willing (or should I say wanting) to put up with all this baggage—I can barely put up with it!!

    -Carrie


  8. jane32

    jane32 New Member

    I have been going since Oct. but didn't really begin much until the end of Nov. Do you get the IV's? I had four so far but I think I am going to take a break. Some days are better then others. I just can't wait until I can finally plan activites with out wondering how I am going to feel.

    I do feel a little better then before I went from-30% to 50%. It is helps having someone finally listen to me. The true test will come when my fevers disappear. I don't think they can cure us but if I hot 80% I will be thrilled. I thought Dr. Nurse-Bey was pretty good but I wish they explained things a little more. What didn't you like about her? Do you trust the center? The new Dr. is suppose to be very good. Why didn't they test you for Lyme's before? It seems a lot of people get tested after a couple of months and then they are positive-I don't get why they don't do it in the begining.

    I was in the office one day talking to this patient who just recovered. She said it took her a good 5 months to feel better and 9 months to feel great. She is now starting the maintence phase.

    Do you live in the Philly area? I know it must be hard to be single. I can't even imagine but I am sure Mr. Wonderful will appear in the near future. at least you will know he is a genuine nice guy as opposed to some of the awful guys out there.

    Did you do the whole TF and artmensin protocal for the EBV? Have they restested your levels yet?
  9. Frecker777

    Frecker777 New Member

    Hi again,
    I absolutely think they should test for lyme the very first appointment—I actually had to push to get the test. My first appt was in July and I wasn’t tested until October! Anyway, it seems like they follow a set path of procedures, testing, treatment, etc. and rarely veer from the path no matter what the patient says. I had previously tried most of the initial supplements and drugs they wanted to give me and was more concerned with infectious agents as causative factors.

    It’s not that I didn’t like the previous FFC doc, I just didn’t like the rigidity of the system—must take thyroid meds, must take pregnenolone, must take B12—all things I had taken before and had nary an effect from. I just want more flexibility and individual attention from a doctor.

    I am so glad to hear you have noticed some improvement—no matter how minor. Did you get a lyme test? Do you live near Philly? I live in the PA suburbs outside the city—out in West Chester—ever heard of it?

    And yes, I tried the artmenisin (sp), but got tightness in my chest from it—so the doc told me to lay off for awhile. So frustrating! Anyway, for now I am sticking with the lyme protocol and crossing my fingers.
  10. jane32

    jane32 New Member

    Oh my gosh- I thought you looked a little familiar. Maybe I passed you before in the area. I currently live in Aston, Pa. I did live in Exton with my husband but had to move back home with my parents until I get stabilized and of course the FFC is so expensive. I run my business out of Malvern though. I use to have a shop but now I just work from home. We plan on moving to West Chester when we finally get a down payment together. Where did you go to school? I want to high school in De-Padua and U of Scranton for undergrad. I was going to Immaculata for my Master's. Actually is that your brother in the picture? He looks a little familiar too. I don't know maybe we all just have that northeast look:)


    Anyways, I have not been tested for Lyme's from that Ignex lab. I was tested through Quest and one other lab like 4 times from my previous drs. I think I will push for it again though. I don't understand why they wait if they suspect it. They are wasting time and money treating something else. Did you take the Transfer Factor or no? What dose are you on of the T3?

    I agree they don't always individualize. I think some Drs. at these centers are better then others. I overheard the new dr. talking and he seemed really good. Hopefully, he can help us out.

    Are you able to work or go out? How long have you been sick? Where did you get treatment before? You can e-mail me if it is easier-mjp@thebluebride.com
    [This Message was Edited on 01/10/2006]
  11. jane32

    jane32 New Member

    Wow! You really do have a great guy on your hands! Does the lunesta let you sleep through the whole night or does it just help get you to sleep? How is the shake? Does it taste bad? I have thought about trying it.

    Thanks for the compliments on the dress. I bought it at a dress shop in Philly that just carries European designers. His name is Domo Adami. I designed it with him. That was my favorite part of the wedding process. I actually had a second dress that I pout on to dance with-a short little thing. I actually think that was the last time I danced yep-a year and a half ago. When I think I bad past memories I feel the worse so I try not to!

    I know what you mean with the kids. Everyone is like oh you are so young you have your whole life ahead of you. I am like yeah great and I am going to be sick for it. I think I rather have this when I am 50 then in my 20s when I am suppose to be having fun and enjoying life!

    At least you don't have the mother in law that thinks you are making it up:)And she is like well at least it is not fatal-yeah thanks!

    Feel free to e-mail me too-mjp@thebluebride.com