SusEQ and Cleveland FFC

Discussion in 'Fibromyalgia Main Forum' started by wishingonastar, May 26, 2006.

  1. wishingonastar

    wishingonastar New Member

    Hi Susie!

    I just thought I would pop on and see if you've been posting and there you were!

    I'm so glad to read that you are feeling better! I have had terrific improvements myself! I am able to work full time now, can keep up with my daughter (on most days) and now feel like I am feeling better than I had before I first got sick in 2004. I still have a slight remnant of the EBV, but the re-testing shows better results every time.

    I hope that people don't give up hope. I did during the early stages of my illness. I never thought I would get my life back, but I have! My daughter and I just moved into a new house and we are thrilled! There is alot of yard work which I am not used to but I am even capable of keeping up with that (as much as is humanly possible!)

    Take care! I've thought about you often and wish you continued well wishes!

    Patsy

  2. SusEQ

    SusEQ New Member

    I was so glad to see your post! Thank you for thinking of me. I'm glad you are continuing to have good enough health to keep up with your daughter and enjoy life!

    How wonderful that you and your daughter moved into a new house!

    Are you still seeing Dr. J? If so, when is your next appt? I go back in July.

    I've had ups and downs during 2006. I don't know if you were aware that I was on ABX for Lyme from June 2005 till Feb. 2006. My liver enzymes have been elevated since Feb. Thus, I had to stop the ABX. At my appt.in April, I expresseed to Dr. J how frustrated I was that I continued to be so exhausted. (I've been bedridden 55 days in 2006.) She did blood work to check EBV early antigen. It was reactivated. No wonder I felt as though I had mono! Dr. J prescribed NAC (N-Acetyl-L-Cysteine), Creatine and Calcium Pyruvate. I herxed and was in bed for 2 weeks. Since then, I've had three half decent weeks. I don't feel good, but I haven't been bedridden. So that is wonderful! I must pace myself and rest as needed. I have been able to go to a few activities involving my nephews and nieces. I've gone out to eat with my hubby. I've done some slow paced gardening. I am trying to keep a positive attitude that I will not crash. Or, if I crash, hopefully it will be less severe and debilitating.

    Tomorrow, I have an appt. with my PCP to remove some skin tags. I think he is going to do blood work to re check my liver functions. If they are elevated, I will have a referral to a GI specialist.

    I have been confident that Dr. J would find something to help with my exhaustion. After trying several different supplements, hopefully we are on the right track with the NAC, Creatine and Calcium Pyruvate.

    It was great to hear from you! Take good care of yourself and enjoy the summer with your daughter!

    Susie
  3. wishingonastar

    wishingonastar New Member

    Susie, so great to hear from you!

    I go back to see Dr. J. in August. It will have been six months since I saw her last. At my last appointment, she noted that the EBV titers were increasing so she took me off of the anti-viral and placed me on Cumanda which is a natural anti-viral (and much less expensive!). I have been holding my own. I have had one really bad cold and one bad flu. I still can get wiped out very easily when I am ill, but other than that, I have felt really well.

    I am challenged with this new house and all that needs to be done, but I am trying very hard to maintain my balance.

    I am so glad to hear that you have been able to have some enjoyment in your life the past couple of weeks. It serves to give hope, doesn't it?! With the good weather on its way, I hope you continue to improve and feel better day by day.

    I noticed that Sarasmom has not been on the boards in quite awhile so I am very hopeful that means that all is well with her and her family.

    Take care, Susie. I'm so happy to hear of your recent progress!

    Patsy
  4. ldbgcoleman

    ldbgcoleman New Member

    Sorry for jumping in on your post! Good to hear you are both doing so well. Thanks you for staying on the board and dropping in. I vowed that if I got better I would stay and try to help others! Sometimes it is hard when people bash the FFC. They ahve helped me so much! so glad you are both having continued success. Lynn
  5. SusEQ

    SusEQ New Member

    Lynn and Pjsmonster: Thanks to both of you for responding.

    Lynn, I agree that people have bashed the FFC. It is an expensive program to follow. Many people do not have the resources or support to follow an expensive program. However, the FFC does offer some type of payment plan program. I'm not familiar with it. I am so fortunate to have a decent disability income. Also, I'm fortunate to have the understanding and support of my husband and parents. I am glad to read that you have made progress, too!

    I have made slow but steady progress while going to the FFC. I have been ill, and progressively getting worse, for 30 years. I knew my system was depleted and it would take a long time to feel better. Plus, I've had many reactions to medications and supplements which have impeded my progress. Hopefully, we have found better medications and supplements that will continue to allow me to sustain some energy to lead a more functional life.

    Patsy, I'm interested in knowing how long you have been taking the Cumanda. Is it available at the FFC? Have you noticed a difference with it? Are you continuing to take so many supplements as you once were? Some of my supplements have been reduced or discontinued. I had been taking Cardio B for my elevated Cardio CRP, Lipoprotein A, etc. The FFC has changed to "Cardio H". I have had two reactions to the new Cardio H. My skin, all over my body, became bright red and burned like a sunburn. I called the FFC. They were closed on a Thursday since Dr. J was having outpatient surgery. I was given Dr. J's mobile phone number and she returned my call immediately! After a dose of Benadryl and a nap, I was fine. I thought you'd like to hear how loyal and reponsible Dr. J is to her patients. I know you have experienced her kindness and promptness also.

    Take care!
    Susie
  6. wishingonastar

    wishingonastar New Member

    Good to hear from you all!

    I have been improving very much under the treatment of Dr. Juguilon. Susie, I purchase the Cumanda on-line, as suggested by Dr. J. She, in fact, said it would be cheaper that way. I take 20 drops sublingually, twice a day. I will be re-tested in August and will know if it is working at that time!

    And yes, they are very expensive but I am very lucky that some of it is covered under my insurance and almost all of my labwork is covered as well. It has been a godsend, really. I was afraid that I would never get my life back and am grateful every single day.

    I also have begun going to a Wellness Center. When I could not get rid of my systemic yeast infection through the traditional means. They were able to re-balance my system and I have been doing very well.

    Susie, in response to your question about the number of supplements...I am taking much fewer than I was. Right now, I take a multi-vitamin three times per day, T3/T4 for thyroid, Cumanda for EBV, selenium (for thyroid optimization), CoQ10, and Transfer Factor, pregnenelone, estrogen and progesterone.

    And from the Wellness Center, I take a B vitamin supplement, a supplement for adrenal support, and a supplement for decreasing stress.

    It is still alot but none of them are expensive, on the whole.

    I still get foggy sometimes, especially when I am tired. But it is nothing like before!

    I encourage everyone to never give up and look for whatever can help you. The FFC will not be for everyone, but it will work for some of us. There is no majic bullet. We have to find the right combinations of treatments that work for each of us. For me, Dr. J. and the Wellness Center that I go to, as well as a private yoga/reiki instructor has been VERY beneficial for me.

    If you get anything out of our journey's, it is to keep trying and never give up. Some of us do get well and many of us make improvements. We are the pioneers in this illness and we have much to teach and much to learn.

    Patsy
    [This Message was Edited on 06/08/2006]
  7. SusEQ

    SusEQ New Member

    Patsy, thank you for the info on the cumanda. I will ask Dr. J about that for me. I am continuing to lead a somewhat functional life. I do not feel great, but so much better than what I had been feeling. I have to pace myself and nap as needed. I am so thankful to be able to enjoy a slow paced life. I didn't realize how much of life was passing me by when I was bedridden several days each month. Realistically, I know I can crash again at any time. I'm enjoying what I can while I'm able to do so.

    You and pjsmonster are so correct about our improvements being individual to each one of us. We must keep looking for the combinations of lifestyle changes that helps us to live a more functional life. The sad thing about our various symptoms is what treatment works for one, doesn't work for all of us...unfortunately.

    I hope everyone has an enjoyable weekend.

    Take good care of yourselves.
    Susie
  8. wishingonastar

    wishingonastar New Member

    I promise to keep you posted on the Cumanda. And I'm keeping my fingers crossed that I'll have good and successful news to report!

    Take care and be well,

    Patsy