Discussion in 'Fibromyalgia Main Forum' started by cherylsue, Jan 15, 2007.

  1. cherylsue

    cherylsue Member

    Hi Debi,

    I see you are on the board again. Welcome back. Anything positive to report on you and your daughter? The last I heard, you were with Dr. Enlander.

    I enjoyed a year remission before I was knocked down again in July. I worked a year, and then BAM. This is my third relapse in 6 years.

    I hope you are feeling some improvement.

  2. foxglove9922

    foxglove9922 New Member

    Hey glad to see you back in way but sad to know you're back because of the relapse.

    I too was off the board for several months,,,,just decided to start living life and come to terms with this illness. But it really didn't work for me. I'm still looking for the magic bullet to get me and my daughter out of this mess.

    How bad is the relapse? Are you off work?

    I'm starting back to college this next week at age 50! Determined to get my brain power back if nothing else. Currently doing pre-reqs for RN. My previous background was bachelors in Business Adminstration with minor in Accounting.

    Seems like a whole lot of stuff happening for those of suffering with CFS and I want to be in a position to help others when I finally conquer this dang illness. My daughter too is slowly proceeding to getting her degress in nursing. We both can only take 2 courses per semester, but, it's a start anyways.

    Years of CFS has dwindled our resources so I can no longer travel to NYC as frequently as I want to but yes, I am still seeing Dr. Enlander and Dr. Levine. Both are are great CFS docs. I worry about Dr. E as he lost his wife several months ago and just doesn't look or act himself anymore. I pray that he will gain back his strength and forge ahead for he is suffering as well.

    Unbelievably, I met an awesome man 10 months ago who I adore. He is an extremely high energy person who takes it out on work and is tired by the end of the day when he sees me so it's working out quite well. My daughter, too met a wonderful boy several months ago at college and seems to have a little more pep in her step with him.

    We both still have to pace and have come to terms with the fact that we must be patient as I truly do believe something good is on the horizon for us.

    Don't lose the wishes to you and yours

  3. foxglove9922

    foxglove9922 New Member

  4. cherylsue

    cherylsue Member

    I am so glad to hear of good news in your life. I'm glad your daughter is improving, too. What treatments do you think are helping you? What level are you functioning? 70%?

    I worked for a year and was doing pretty well until CFS reared its ugly head last summer. I haven't been able to go to work at all, and am functioning between 35-45%. It's really discouraging. Each bout takes a little more exercise tolerance from me, and I haven't been able to take my walks as much as my previous bouts. Although, I must say my cognitive difficulties came online faster.

    I'm seeing a CFS doctor in Chicago who is part of the CFS Advisory Committee for the U.S. Dept. of Human Services. He's very sweet. My new local PCP has been very kind and cooperative, too. I'm on .5mg of Klonopin to help with sleep issues. I've passed the misery phase- intense malaise, cognitive dysfunction, and exhaustion. I'm now in the phase of poor stamina and fatigue.

    Does Dr. Susan Levine still treat with LDN Naltrexone? I was interested in this RX because a doctor friend of mine who practices in California suggested it. A colleague of hers recovered fully from CFS while on this drug. I know Dr. Levine was one of the few doctors using this drug. There is a compounding pharmacy in the area where I live that supplies it.

    What treatments have you been using? Have you been in any clinical trials? Have you had your viral load tested by Immunosciences Lab? Are you on any RX antivirals?

    Good to hear from you.

    [This Message was Edited on 01/19/2007]
  5. foxglove9922

    foxglove9922 New Member

    Hi Again,

    We are by no means functioning at a higher level than before. Guess I could best describe it as a plateau. I'm in a catch 22 being a single mom with a child suffering from CFS. If I go back to work parttime, we lose our health insurance and I don't even think I could be dependable enough to work parttime with the ocassional flares and tendency to catch every bug that seems to come along.

    I am however with the blessing of Dr. Enlander trying 2 classes at the local college (algebra and english) to try and improve my short term memory and cognitive functions. My dream is to pursue a nursing degree in the hopes that I may someday be able to help others. It may take years and years at the rate I am currently able to go but at least it's getting me out in the world of the living again and gives me purpose. Other than that I have managed to still maintain my own home, get groceries and meds, and ocassional get out for a movie or dinner.

    I still do yoga/pilates at least 3 times a week which along with diet and pacing have helped me the most. I take 1 mg of Klonopin at night for sleep and Hepapressin injections (bovine equavilent of Kutapressin)as an immune system modulator.

    A few weeks ago I had a terrible bout of bronchitis that required an anti-biotic. The AB cleared up the bronchitis within 48 hours but I herxed so bad for 4 days on it, I was certain that other bacteria was at play in my body. I'm currently back on Doxy to rid myself of any other possible critters.

    In a couple of weeks I plan on adding back in Valtrex as I herxed something terrible on this med which also leads me to believe it's on a killing spree.

    I am actively going to pursue with Dr. Levine the possibility of trying Valcyte. She's concerned about the distance factor (I travel by bus 5 hours to see her)and the bone marrow risks with the med. I have a Quest Lab right around the corner so I'm hoping she'll reconsider.

    I'm approximately 50% of the person I was pre-CFS. My only meds are Hepapressin, Klonopin, Human Growth Hormone, Q10, multi vitamin, and just started d-Ribose in the morning. The d-Ribose seemed to give me just a bit of a boost....not enough that I would consider buying another bottle. I have abandoned the ProBoost because of cost and see no significant difference.

    I am so terribly sorry to hear that you have relapsed. I can only imagine how discouraging that must be after having reached a better quality of living. This illness is one big roller coaster ride.

    I did try LDN which didn't do a thing for me. Was a bit pricey and did come from a compounding pharmacy in the Chicago area. Funny how what works for one doesn't for another.

    Sometimes the more I read about this illness the more confused I become. Like Mikie said in another post, sometimes we must take a break from the constant search for a cure and let the researcher battle it out and wait for the day when something REALLY happens for us.

    In the meantime, I'm back to poking around (especially interested in what came out of the Florida conference) for what's new. Right now I know from my lab work, that I'm very virally compromised so Dr. Montoya's work has sparked a renewed interest for me.

    I have not and probably never will come to terms with this illness. I am still MAD this happened so I guess maybe that's not such a bad thing because it keeps me fighting.

    I am so happy that at least you have located some knowledgeable CFS physicians. That truly is a plus and I pray that you will also find some salvation from this horrible illness.

    My sincere best wishes to you and yours,

  6. cherylsue

    cherylsue Member

    Thanks so much for the update. I'm glad you have support from your partner, daughter, and good doctors. I know your frustration. I'm on temporary disability right now, and it wouldn't pay for me to go to work part time. I miss work terribly. I've just recovered from a cold of 3 weeks which set me back some.

    I like yours and Mikie's reasoning. Let the researchers do the research, and we should sit back and wait for something definitive. I've been trying all kinds of supplements. It's expensive. Maybe, I should just sit back and let the virus burn out. My CFS doc thinks it's HHV6.

    Many hugs to you and your daughter.


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