FFCer's Part 2

Discussion in 'Fibromyalgia Main Forum' started by mollystwin, Mar 6, 2007.

  1. mollystwin

    mollystwin New Member

    OK here is part 2 of the thread formerly know as Attention FFCers. Good idea dncnfngrs!

    Debbie,
    When I had too much thyroid my heart was beating loud and fast. Kind of like jumping around in my chest. And I was a bit nervous. I'm sorry you've been struggling! Maybe this is a herx week for you. Molly has a week every month were she herxes and feel lousy. I hope your Dr can help you on Wed.

    My treatment plan is doxy for the lyme, supplements for adrenal fatigue, chronic fatigue, various mineral deficiencies, chlorella for detox, and some other supplements like COQ10 etc. My hair analysis showed high mercury so I'm getting my fillings replaced with porcelain next Monday. I hope that will help my immune system a bit. My new doctor give chelation IV's and I have one scheduled right after the removal on Monday. How is your Hubby doing with his lyme treatment so far?

    Munch, I'd love to meet up with you if you decide to see our doctor here in Michigan. He's a great doctor!

    jarjar- good points about fibro and lyme. When I told FFC that I was leaving to see a lyme doctor I suggested they test all their patients with an Igenex western blot. I hope they start doing so. They could help more people.


  2. dahopper

    dahopper New Member

    Well my appointment for tomorrow has been cancelled due to my doctor being sick.....I hate that :-( I was really needing to see him. I will go ahead and go with my hubby for his IV and I will have some blood work done so my doctor can go over it with me next week for my appointment they rescheduled. My hubby just drove up from work so I will continue this later. Have a wonderful evening. Hug, Debbie
  3. dahopper

    dahopper New Member

    We were at the FFC in Dallas today until around 2:30. What time were you there ? I found out that we are actually scheduled for the next three Thursday for 1:15 but since we drive so far if we get there early they go ahead and hook us up. Actually I am not doing the IV's anymore just my husband. My doctor was out sick today so they rescheduled my appt. time for next Thursday I believe at 2:00. I am tired right now...Long drive there and back today. I got 2 shots I hope they boost me up some and they did more blood work. I am excited about meeting you too. Now what is your name? LOL
    [This Message was Edited on 03/07/2007]
  4. dahopper

    dahopper New Member

    Dar thanks on the info on the thyroid and treatment plan. I have several bad days a week here lately and not sure what is causing that so maybe its a normal thing with people with Lyme.

    Also Thank You for asking about my hubby, he is doig so much better than me on his treatment for lyme. He does not have the fatigue I have. Sometimes it can be more than I can stand and then the pain crops in with it at times in my back and shoulders and oh boy !!

    I still say the only hope I have in this part of the country is the FFC in Dallas unless I am missig some great doctor I have not heard about yet. But I am just wondering if this struggling is normal with lyme patients.

    I stopped my doxy over a week ago becauce I need to start trying to get a base tan before going to Destin in May. I did not get to see my doctor yesterday as I hoped becauce he was out sick. I will see him tho next thursday. He has my hubby on two different kind of antibiotic so he will not burn beings his job has him outdoors most of the time.
    So maybe he can switch me up for just the summer months. I have my own boat so I am in the sun alot thru the summer months.

    Molly I hope you have a wonderful vacation. I always crash after any trip so I've kinda learned to except it. I HATE it tho !!! Its just NOT fare !

    Take care Girls....I enjoy this thread, Hug Debbie
    [This Message was Edited on 03/08/2007]
  5. mollystwin

    mollystwin New Member

    I am going on vacation with Molly too! She is leaving a day earlier than us, but we are staying at the same place. It should be lots of fun.

    Dncnfngrs-I just started my chlorella yesterday, so I don't think this was contributing to my heart issue. Thanks for letting me know about this in case it effects me that way.
    I do the mito fuel and corvalen but still fing traveling difficult. I just take a nap first thing and then I'm usually OK.

    Debbie- Did your doctor put you on a different abx for vacation and summer? Or are you just taking a break? I hope my doctor changes mine, because I want a tan on vacation! Molly is on two abx that don't cause sunburn, so she will be OK.

    Hi there Hootie!!Good to hear from you!!

    I enjoy this thread too. Thanks guys!!
  6. munch1958

    munch1958 Member

    Is this thread turning into a Lyme clique of sorts? If only I could think of a drink allowed on everyone's candida diet...

    A nice cold bottle of spring water and HOLD THE LIME. If anyone is ever out my way we could meet at the bar my hubby owns, Rondevoo, Dwight,IL for a fabulous blender drink. I can do both cocktails or mocktails.

    I can count on one hand the number of drinks I've had in the past 2 years. For a bar owner, this is very sad but so much better for my health. Not setting foot in the bar is
    the only way I can avoid the alcohol issue.

    People want to buy the owners drinks all of the time but they can't understand that I can't drink and take the meds I'm on. No second hand smoke to inhale either. Tobacco really makes my fibro pain worse.

    Today, I sent the Detroit FFC Manager an email with links from ILADS and LDF webpages on "How to read a Western Blot." My closing line was "words can not express the disappointment that I feel over the misdiagnosis of Lyme disease at the Detroit FFC." I'm going to send a formal letter to their corporate headquarters next. I don't think I will be baking them cookies ever again.

    I've contacted both the Michigan Lyme Disease Association and Lymeillinois.org for the names of different doctors. I've got a post on ILADS too. I got one reply to that.

    I found one doctor in Chicago, Illinois, Dr. J.Z. who says he's familiar with Lyme but does not consider himself to be a LLMD. His website looks interesting. He charges $275 for 1.5 hour visit. Not in my insurance plan. He treats candida, uses antivirals for EBV/CMV, ABX for Lyme and co-infections.

    I have an appointment with Dr. C, Missouri, the first week in April. Dr. C. has looked at my Western Blot and would like to see me in person. There's not doubt in my mind that LD is affecting my brain. My short term and long term memory and cognitive abilities have been shot since I was hospitalized for 3 weeks for sarcoidosis in 2001. This is not normal menopause.

    I'm leaning towards this doctor since he's supposed to be one of the best in the Midwest. I don't want to go to someone just because they are the only doc in IL and get the wrong treatment.

    Dr. C charges $460 for 1.5 hour visit plus the cost of gas, hotel and meals on the road. He does not accept any insurance at all. My husband doesn't want to do multiple trips there like the 7 trips we did to go to the FFC in Detroit.

    I found a post on a fibromyalgia group on tribes.net another FFCer with Lyme disease and a fibro misdiagnosis.
    Interesting reading. We are not alone! I think she's in NJ.

    http://tribes.tribe.net/9d84084c-cb05-4d6b-a281-ce02e406b088/thread/f9743af3-0c11-4ff6-a5f0-e880cc0da9c9

    I hope everyone else on this thread has a great weekend and remembers to spring forward.

    Best wishes for a fantastic vacation to Molly & Dar! You both have "Paid it Forward" with the FFC & Lyme thread. A round of applause to you both! It's too bad we all found out about it the hard way.
  7. mollystwin

    mollystwin New Member

    dncnfngrs- Thanks for the well wishes! I am really looking forward to this vacation! I think we will feel good because we will be stress free!!

    Munch- What a great post! I haven't notified corporate FFC yet, but plan to. Just have so much going on. They do send an evaluation for all former patients to fill out so we should both be getting one of those as well.

    Good luck on finding a wonderful doctor! It sounds like you are on the right track with that.

    Your hold the lime comment just cracked me up! My friends at work tell me they are going to buy me that lime away product that they sell to clean lime build up from water. Do you think that will work for us?

    It's so sad that you own a bar and can't have cocktails!! I miss my red wine! It's always harder on vacation too. Oh well. Some day I will have cocktails again!!

    And thanks for the pay it forward remark! You are also paying it forward with your letters to FFC. Let's hope that they get their act together and learn how to treat lyme properly in Detroit! They are going to need to in order to fill that new addition they are adding!!!

    Have a great day to all my friends from this post!!
  8. dahopper

    dahopper New Member

    No my doctor still does not know I just stopped the doxy. But he has my husband on Azithromycin 500mg and Omnicef 300mg 2 times a day. Now that is a generic name for some antibiotic but I can't remember what.

    Today I am going to start taking some of my hubbys Omnicef beings I will get to see my doctor next Thursday but I am still on the Azithromycin 500mg everyday. I just wanted to get the doxy out of my system so I can start tanning. YEA !!!

    When do you and Molly leave for your trip? How long will you girls be gone? And if it is not being too too noisy where might you guys be going ?? I am going to miss you guys while you are gone. I sure hope you feel good and relax. You may have a small crach when you get back but then again all of us back waiting on you guys to return safely will pray hard and maybe with all the prayers you will miss the crash. Huh ??

    Dncnfngrs.....You are the funny one !!!!!! I knew that crew at FFC would have no problems knowing who you where talking about when asking about me. LOL They know me and my little hubby all too well. But yes I will be watching for you, I hope I get to see you becauce I may be in my doctors appointment but I will for sure look for you and we will get to meet. Oh how exciting !!!

    Ok Dar and Molly I did scan up and saw where I missed you guys are going to Florida. Oh how wonderful !!! We leave in May for Destin Florida. We rented a two story house that sets right on the most beautiful beach. Oh boy I can't wait !!!

    Take care girls !!! Love, Debbie
  9. mollystwin

    mollystwin New Member

    We are going to Deerfield beach Florida. This will be my family's third visit. We really like it there.

    My hubby sometimes brings his laptop and if he does I will check in from time to time.

    We are going Thursday before Easter and will stay until the following Thursday.

    Can't wait!!
  10. mollystwin

    mollystwin New Member

    What's new? Have you scheduled and/or done your testing yet? I know it takes a while to get results back.

    I was thinking about you yesterday and then when I signed in today this post was here right at the top!

    I had a bit of a rough week this week. I only worked one day. I'm scheduled for three, but I think I'll have to go down to contigency category because I just never know when I am able to make it to work! I'm so happy to have an understanding boss.

    Hope you are doing well.
  11. dahopper

    dahopper New Member

    I'mso sorry you have been feeling so bad !!! I have been struggling very bad too. :-( I hope you get to feeling better soon. Love, Debbie

    Thanks Hootie for the bump. :)
  12. mollystwin

    mollystwin New Member

    I hope you feel better soon as well. This is week 4 for me which is when a lot of lymies start to herx. And it's my cycle week. My dr told me yesterday that lyme symptoms typically get worse during period week. So he told me to try taking 100mg of B-6 per day and an additional magnesium aspartate 2x a day during days 14 through 25 of my cycle and it should help. I'll try that next month.

    My cycles are getting a bit irregular as I approach menopause though. It's very late this month, even took a preganancy test to rule it out LOL!!! I'll be 48 in June and my Mom and all my older sisters were done by age 50.

    I wonder how Hootie is doing. Hope she is well.

    dar
  13. mollystwin

    mollystwin New Member

    I can't wait to hear your test results. Thanks for posting.

    So tired today, but not much pain thank goodness.

    dar
  14. dahopper

    dahopper New Member

    Hope you girls have the time of your life and yea for taking your computer !!! I have a small sony laptop and my wireless is for unlimited is 79.00 a month and I take it to Dallas with me or anywhere we go. I LOVE it. It just helps pass the time. Worth every penny !!! How have you girls been feeling ? You too Hootie ?? I am seeing some increase in energy since starting the valcyte...it took awhile I thought I was going to die at first but the Eklipse and the burbur is helpig tons too.

    Take care girls I pray for us all all the time. Love, Debbie
  15. mollystwin

    mollystwin New Member

    Hootie- I sometimes think the same things that you do. Will this ever go away? Should we treat dormant infections? Do I really have lyme, or was I just exposed to it?

    I've come to the same conclusion that you said, our immune systems are poor and that's why we have all the infections. What made us this way? Was everyone in the US exposed to lyme and only us with the poor immune response got infected and sick? I think maybe so.

    I have been reassured of my lyme diagnosis by my CD-57 test results. I am convinced I have lyme and require treatment. My sister has met two women who have been treated by our doctor and have their lives back, so I'm now happy to be in treatment. Plus the herxing I;m having verifies I'm killing them off!! Plus Molly is improving bit by bit!!

    I hate taking these abx. After some time I will ask my doctor about the herbals and see how they work. But I'm curious about my CD-57 results. He took more blood and I'll see if my number went up. I hope so, it will give me some hope!!

    Debbie- I'm so happy that you are feeling a bit better! Yay!! I've had a bit more energy today as well. I had such a rough week, I think I'm pulling out of it a bit.

    Molly spent the night on Thursday so that we could go shopping on Friday am. We shopped for an hour and then went home to nap. Our usual routine. It was fun just to get out and do something normal! I went with bed head so that I could conserve my energy for shopping. There was a time when I wouldn't be caught dead going out looking like that!! LOL!!

    Take care good friends!!
  16. munch1958

    munch1958 Member

    I never heard of this test so I had to go look it up.
    http://www.anapsid.org/lyme/strickerpanel.html

    This test is going on my list for my doctor's appointment on Wed. I'm seeing Dr. Jack Zoldan in Chicago. He says he's NOT a LLMD but here is a link to his website. http://drjackzoldan.com/PtCare.html

    After blowing a big wad of cash at FFC, I hope I'm not wasting even more. When I started at FFC in March 2006, I was told that Quest had suspended testing of NK Cells. I REALLY wanted to know what my tests results were before starting treatment. I have a long history of endometriosis (surgery x6) and low NK cell function is implicated in that disease. As far as I know I never received this test.

    Recently, I complained to my FFC via email about my confusion over my positive Quest Western Blot for Lyme (band 41). My IgeneX was negative but there were some bands specific for Lyme that were positive or indeterminate. In response, I received a letter from my doctor stating the reasons why she thinks I'm misinformed. I suspect it's a form letter.

    After receiving the letter, I left a voice mail for the center manager stating the reasons why I thought it's probably Lyme and they missed it. I also explained that I was not coming back because I don't see anything that they have to offer that I haven't tried.

    I did great in the beginning but keep on crashing. I've never got back where I was in the first 3-4 months in treatment in spite of repeating everything I was taking back then.

    Yesterday, I received a letter with two $100 gift cards for use during my next visit.
    [This Message was Edited on 03/26/2007]
  17. mollystwin

    mollystwin New Member

    I just wanted to mention that I got a letter from FFC as well. Munch shared her letter with Molly and I and her letter was almost identical to the one FFC sent me!! There were a few paragraphs that were specific to each of us, but the rest was identical word for word. So I'm wondering if they use a form letter and personalize it just a bit for each patient. Makes me feel so special that they sent the same letter to other patients when I spent about an hour carefully constructing one to them!

    I am a bit better today after somewhat of a rough week last week. I had my first chelation IV yesterday and had a heachache and muscle aches last night. Not sure if it's related. I'm also doing the urine challenge. I have 1 1/2 more hours of saving my pee. Can't wait to have that over with!! Then I get to deliver it back to my doctor.

    And Hootie, I will be going out once again with bed head today!! I did put on a bit of makeup, though, just a bit of foundation and powder since that's easy.

    Debbie and dncnfngrs I hope you're both doing OK this week.

    bye for now friends!!
    [This Message was Edited on 03/27/2007]
  18. bree~leigh

    bree~leigh New Member

    Hi All!

    It is my understanding that FFC docs throughout the country have a unified protocol in place that they individualize per each patient's unique set of symptoms. Routine testing for lyme is part of the protocol. They have Igenex lab kits in their own lab room.

    This has been my case. My FFC doc did test me for lyme, first with Elisa, then with Western Blot via Igenex..both were positive and I am being treated with long term ABX now which is helping.

    I wonder why some FFC's are routinely testing are others are not? This also is true of the hypercoagulation abnormalities most of us suffer from. My FFC routinely tests for these as well.

    Considering the centers are directed under the tutilage and protocol of Jacob Teitelbaum, these tests should be suggested to all patiens with our symptom clusters. True, they are expensive, so this is why some are not receiving the tests, but they should always be recommended.

    I would hate to see some FFC not following protocols! But if a specific FFC doc does not appear lyme literate, then by all means get a second opinion with a lyme literate doc.

    I guess I have just been lucky.

    Best Wishes, Bree
  19. mollystwin

    mollystwin New Member

    Dncnfngrs,
    I agree that it is very important to be proactive. Beleive me, my wheels were squeeking, but they never got greased!! Maybe I am too nice about it. Being proactive only works for cooperating physicians. Some are just too stubborn to listen. That's why I had to change doctors. After repeatedly being asked for tests and being denied, and expressing concerns about too much thyroid only to have it be increased I left FFC.

    As you are aware my new doctor gave me my lyme test (and others I asked for)which was positive and my thyroid was way out of wack! Now I'm being treated for my lyme and my throid meds have been cut in half and I'm much happier!

    I know that FFC doesn't depend on the blood work entirely and uses thier own ranges, but my thyroid was 250 points ABOVE the range and I was having symptoms of too much. FFC never checked my bloodwork again in 10 months despite requests to lower or go off the drug. They just handed me another $50 supplement for my heart.

    Beginning last fall the dr kept saying "next time we will do blood work". Then at the next visit I would ask about blood work and she would say "no dear, it's too early!" She did this three times, although she did recheck my liver enzymes (for the first time in 10 months) and candida.

    It sounds like I'm bashing FFC. I really don't mean to. I'm just a bit frustrated. I know that many have had great sucess at FFC and I am happy for those people. It's just that I feel I have wasted so much time and money and feel a bit betrayed by them because of my experience.

    Not all FFC's are created equal and I think the one I went to just needs to have more experience with Lyme and thyroid issues. I hope that they successfully treat many more patients, because we need good doctors.


    [This Message was Edited on 03/27/2007]
  20. grace54

    grace54 New Member

    I was wondering what you are now taking for thyroid med and how much. I too went to the Detroit FFC. I am up to 125mcg's of compounded t-3. Fcc ordered blood work up where I live but they messed up and didn't check the t-3 so I still don't know my numbers.

    I will be checked for Lyme also up where I live as I ran into a gal who has it and her husband and son also. She mentioned a new DR who treated Lyme and unbelievably he is in my nearest town 7 miles a way. :) I know what you mean about stubborn DR's and I can't believe you had a negative reaction to thyrouid med and they didn't reduce it, that's dangerous. I wish you luck in your new treatment. Thanks