FFC Atlanta results

Discussion in 'Fibromyalgia Main Forum' started by Countrymom, Nov 22, 2005.

  1. Countrymom

    Countrymom New Member

    I received my infectious panel results on Monday.

    It looks like I have:

    EBV-- very high results,

    Mycoplasm-- active

    chlamydia pnuemonia-- active

    and,

    Lyme... they say it is chronic but maybe just 2 years or so, so hopefully it will be easier to treat.

    I am starting transfer factors first, then doxycycline, then arteminisin. After that I will start on something else and start treating the EBV.

    I am waiting a couple of days before starting these.

    I got 2 of the IV's for back and muscle and 2 of the viral IV's while we were in Atlanta.

    Happy Thanksgiving everyone!!

    Dani
  2. ImDigNiT

    ImDigNiT New Member

    I am happy but also sad for you at the same time. But at least you now know what you need to do for treatment.

    I went to the Denver FFC but as soon as possible I need to start treatment at the Atlanta FFC. I live in Tallahassee,Fl and it is much closer. See my diagnosis below:
    I also have been diaganosed with the following:
    Chronic Lyme
    Fibro
    Chronic Ebstein-barr
    CMV
    HHV6
    Candida
    Chlamydia Pneunia (also known as the "Heart Germ"
    Clotting Defect (to much)
    High BP
    Low Natural Killer Cell Activity
    Vit. D Defiecncy
    Reverse T3 T4
    High Cholesterol in all catigories
    Cornary Ratio High
    Cardiovascular is high (12.2)
    High Cardio CRP (8.4)
    Along with Hormonal imbalances and thyroid issues.


    I have a question for you. Are you going to have to go to the clinic twice a week for IVs for a period of time, if so, how long?

    Also, what do you think about the staff and MDs there? I loved the Denver staff.

    Take good care of yourself.

    Warm Hugs,
    Marcia
  3. Countrymom

    Countrymom New Member

    Marcia,

    I love the staff there. They are so nice.

    I don't have to go twice a week for the IVs. Dr.B said she would recommend them twice a week if I lived close. I had my appt on Monday, got 2 IV's and we stayed overnight in Atlanta. We went back to the clinic on Tuesday for 2 more IV's.I will probably try to do that once a month for a few months.

    Sounds like we both have alot to fight. I was really freaked out by the Lyme but at least I have a plan of action now. I now have hope.

    Good luck and I will definately try to follow your posts. You can do a search on karatelady, lgbdcoleman,fogster,Jansdad, they also go to Atlanta and have been very pleased!!

    Dani
  4. auntyemnga

    auntyemnga New Member

    Hi Dani,

    I haven't been on the boards for awhile. I'm in FL for Thanksgiving and have some spare time so I'm very happy you posted this morning. I'm glad you finally got your results and now have a plan of action. How have you been handling knowing what to take when?

    I temporarily stopped the IV's. I think going twice a week was too much. I got really tired. I had my blood test results the first week of Nov. I'm now on 2 creams and cortisol and something else. I finally created an excel spreadsheet to use as a check-off list for everything I take. Some are on empty stomachs, some with food, some have to be 3 hours after my thyroid med. I couldn't keep it all straight.

    Sheila
  5. Countrymom

    Countrymom New Member

    Sheila,

    I know what you mean about the meds. I have a spreadsheet with the med name, how many to take, and at what time. I just keep them all in a big basket with my sheet next to it and take them that way. I take meds in the am on an empty stomach, 1/2 hour later with breakfast and give my heparin shot, then I take a handful at lunch, again on an empty stomach befor dinner, and about 2 hours before bed I give my other shot and take all but my last 2 meds, those I take as I am getting in to bed. I did however get new prescriptions to add more so I will have to juggle it alittle more now. My husband learned how to give me my energy shot in the muscle so he will do that as needed, once or twice a week. Oh and I also add in pain meds whenever I need them.
    I just remember everything is temporary. I can do anything if I have to, I have put my trust in the Lord and have given him the burden of my worries for now. I just do what I have to and the Lord has given me the strength, I thought I would break down if I learned that I have Lyme, but the Lord gave me the strength. He will get all of us through this one way or another, of this I am sure.
    Hope you are feeling well and hope to see you sometime,
    Dani
  6. ldbgcoleman

    ldbgcoleman New Member

    I cannot beleive I completely forgot and missed you yesterday. (Picture me hitting myself on the head!) (Oh wait we didn't meet so you don't know what I look like!)

    Darn Darn Darn! I was running errands and I went riding. I am really glad you have the results and the real work can begin! The Doxy and Famvir made me feel really bad for about 5 days then I began to feel mush better. I don't have lymes so I am very lucky but I am gonna pray that you get quick results! One more thing I can not get in the sun at all with the Doxy so be careful at first!

    So you met Karatelady! Isn't she wonderful?? The one good thing that has come out of all this is the terrific people I have gotten to know.

    Imdigingit! come on and join the Atl FFC club! We are all in this together!

    Auntyem- Good Luck in getting better!

    Take Care Everyone!
  7. Dalphia

    Dalphia New Member

    Sounds like you are adjusting to the results gotten on Monday. And, I might add, I like your winning attitude! You are correct in that we can take the difficult things in treatment when we know it will be temporary.........that is the atitude I had to take, no quick fix to our illness.

    I know how you and I were apprenhesive about the Heparin shots but now they are just a breeze, aren't they.......but, I was like you, I wasn't ready for the Lyme part of results...........I think I was somewhat numb but when reality hit, I knew I could fight this thing.

    The people on this board have helped me tremendously to understand some of the things I've experienced and things to be aware of. Without these people I think I would have felt even more lost. I thank God for all of them and the opportunity to have met you, Lynn and so, so many others in Atlanta.

    Stay positive and we must focus on God during our healing process, there is such comfort in knowing he never leaves our sides no matter what we're going through.

    Take care and keep us posted.
    God Bless You,
    Dalphia (Gay Parsley)
  8. castle

    castle New Member

    HELLO COUNTRYMOM
    MY NAME IS SCARLETT FROM EVANSVILLE IND.8HRS. AWAY FROM THE ALANTA CLINIC WHICH I ALSO ATTEND THIS WEEK WHEN I MET YOU AND KARATELADY.I TO HAVE BEEN FREEKED OUT THIS WEEK ABOUT THE RESULTS OF LYME AND THE COAGULABLE COATING PLUS THE EHRLICHIOSIS,EBV,CMV,BOTH TYPE OF PNEUMONIA AND THYROID (HASHIMOTOS) PLUS ADRENAL,CANDIDA,LOW B12,INCREASED RNASE,LOW NKCELLS,LOW IRON,LOW PREGNENOLONE,LOW TESTOSTERONE,HIGHREVERSE T3,LOW FREE T3,LOW DHEA,LOW SEX HORMONE(MY HUSBAND DIAGNOIS THIS ONE) I THINK I'VE COVERED ALL OF THEM. IT IS SO OVERWELLING AT TIMES. ALL THE PILLS, CREAMS, SHOTS,TREATMENTS,TRAVEL,I'VE DONE REALLY WELL WITH EVERY FINDINGS UNTIL THIS ONE.YOU ALL MOST CAN'T BELIEVE YOU COULD HAVE SO MANY THINGS WRONG WITH YOU. NO WONDER WE FEEL SO SICK. I'M SO LUCKY TO HAVE A SUPPORTED HUSBAND AND A GOD WHO KNOWS MY SORROWS AND WITH THOSE TWO THINGS AND THE CLINIC WE ARE BOUND TO GET WELL.I TRUELY LOOK FORWARD IN CHATTING WITH YOU AND LIFTING ALL THOSE WHO ARE STRICKEN BUT NOT DESTROYED UP IN PRAYER. BLESSINGS TO YOU. SCARLETT
  9. karatelady52

    karatelady52 New Member

    I'm glad you found this board. How was your long trip home?

    When you have some time, you might want to do a search on here for any questions you might have. Many of the ladies (and men too) are going through similar struggles as you are so you don't have to feel alone.

    Don't forget about the lymenet dot org board. They have a lot of information specifically for lyme over there.

    Once again, welcome Scarlett! It's nice to be able to put a face and name together.

    Sandy
  10. auntyemnga

    auntyemnga New Member

    Dani,

    After reading your last message, it has given me strength to continue this long road!! I think my biggest mistake is that I've attempted to continue working even though my family has suffered tremendously. I need to think of my 2 kids and what a miserable childhood they've had due to having a mother who wasn't even living at a 35% life.
    My son is being supportive but I've started asking the kids to do more for me than what I have in the past and that's not settling too well.
    Regarding your big basket...do you take it with you when you're away from home or do you put them in a daily box or something? I used to be able to know which pill was what but now I'm having problems so I've been carrying some of the bottles with me. I bought a cosmetic bag that about 5 - 6 bottles fit in but it doesn't fit in my purse.
    I'm game for any suggestions from you or anyone else who reads this post.
    Thanks for sharing with me,
    Sheila
  11. Countrymom

    Countrymom New Member

    Sheila,

    If I am going somewhere for the day I take my basket with me. If I know I will be out,and will just need a few pills, I just take them and put them in a baggie with the time I need to take written on the baggie. Scarlett had the idea to use an egg carton and she can set them all out for the day. I think you just have to figure out what works best.

    Scarlett, I was so glad to meet you. I am glad you finally got on the board! There really are so many wonderful ideas and suggestions here. Don't hesitate to ask, someone(usually Mikie or Lynn) knows the answer!! I cried when I got my initial testing back and had like 20 things wrong with me, I counted and before this visit, I take 43 pills a day, one is a cream but I count it anyway. Now Dr. B is adding more so I will have to recount. My husband learned how to do the energy shot so I can get those at home. Maybe you could check on that too, it costs about 150 for all of the supplies but you get about 15 doses out of that.

    You will most likely start to feel worse(I know it is hard to imagine) when you start the heparin, but that means it is working. Brenda also said you can give the shots in your thighs to give the belly a rest. I was horrified and scared to death to start the heparin and now it is just another part of my routine, no more bothersome than taking a pill.

    Hope your trip home went well, talk to you soon,
    Dani
  12. auntyemnga

    auntyemnga New Member

    Dani or any board member,

    How do you remember what time to take pills? My day goes by so fast at work that time flies. I started setting calendar appointments that pop up on my computer screen as a reminder. But then on the week-ends I'm out of luck. I've tried finding pill alarms on the net but I haven't been very impressed with the cost of the ones I feel I need.

    Thanks,
    Sheila
  13. karatelady52

    karatelady52 New Member

    Have you given yourself any of the Heparin shots on your thighs? I did my first one and boy did it leave a bump and was it sore!

    I think I'll stick to the lower stomach.

    Sandy
  14. LdyM

    LdyM New Member

    Welcome to the board Scarlett! The information and support here have changed my CFIDS life.

    Good suggestion regarding setting pills out for the day in an egg carton! I'm going to try it.

    I would like to ask you to please don't write in all caps and please use lots of paragraphs. We (I) have trouble reading your posts.

    Blessings, **LdyM
  15. ldbgcoleman

    ldbgcoleman New Member

    The best thing to help with swelling and soreness from Heperin is ice ice ice! For at least 20 minutes directly after the shot if you can. This makes a big difference! If you feel like you have the flu with swollen glands it's the Heperin. I also was mortified bgy doing the shots but now it is a piece of cake! I am hoping to be able to stop at my next appt in JAn. I started in MAy which seems ;like a lifetime ago! Take Care Lynn