New to the board (and a patient of Dr. Lerner)

Discussion in 'Fibromyalgia Main Forum' started by Smurfette17, Jan 5, 2009.

  1. Smurfette17

    Smurfette17 New Member

    Hi everyone,

    I’ve been browsing this message board for the last few days, but didn’t see a separate thread for new members—so I hope it’s ok that I’m starting this thread. As a fellow CFS sufferer, I am very happy to have found this board where I hope to be able to exchange ideas and support. This is a very isolating, depressing disease, and I got it shortly after I moved to a new city, so I don’t have a support system where I live.

    I’ll try to be brief about my story. I became ill with mononucleosis (positive test for EBV) in January of last year. I never recovered from the fatigue and developed other classic CFS symptoms as we all know them. So, I’ve now been sick for about a year. In September, I started to see Dr. Lerner for CFS. I heard of Dr. Lerner from a friend of my family’s who is a CFS patient of his. I feel fortunate that he is just 1 hr away from my home.

    I’m 33 years old, and had always been an active person. I’m a biology professor and my research focus is tropical biology. I had been conducting fieldwork in the Amazon for the last 10 years, so obviously my health was good. I even used to teach exercise classes in my spare time! So, needless to say, CFS has been a HUGE change for me. At the time I got sick, I had recently moved and started a new university job that I love (in west MI). I was commuting on weekends to see my husband, who lived 2 hrs away in Ann Arbor where he is a resident at the UM hospital. Sounds crazy, but it was all doable with my previous level of energy. Then, after 6 months on the job, the mono came. Once I got sick, I went on a leave of absence and re-located to Ann Arbor to be with my husband. But it’s hard for him to “care” for me, because he’s always at the hospital and his hours are brutal. Although my parents live 6 hrs away, they have really been helpful with this whole thing.

    My job is being held until August, and I’m praying that I’ll be well enough to at least return to work by then, but I’m getting more and more discouraged about that timeline. I know recovery from this disease can take years, not months. I'm in the process of applying for long-term disability with private insurance in case I can’t go back to work (topic for another message).

    As I said, I’ve been seeing Dr. Lerner since early Sept. My CMV tests have been consistently negative. My EBV results have been all over the place. The first one was negative (surprising, since I’d had a positive one when I had mono). Then 3 weeks later the IgM VCA antibodies came back positive (26, not super high). I have been on Valtrex for about 2 months now. In my 3rd week into it, I felt very ill and flu-ish. I saw Dr. Lerner and he said it sounded like a secondary infection (my body fighting a cold or something), but it could also have been a positive effect of the Valtrex. Since then, I’ve not been great. My best month was really October, before I started the Valtrex. The strange thing about my EBV levels is that the test just before I got put on the Valtrex turned out negative again. So I’ve had a negative test, a positive test and another negative. My next appt is on the 12th, so I’m curious to see what the levels will be after all this Valtrex. He does not test me for IgG, only IgM (for the EBV).

    Another thing that concerns me is my HHV-6 titer. I’ve had it tested 3 times with Dr. Lerner, and each time it keeps doubling. First was 1:40, then 1:80 and the last one was 1:160, which is borderline positive. I asked Dr. Lerner if I should be on Valcyte too but he wanted to test me a 4th time to see what was happening, as he said Valcyte is more toxic than Valtrex. I have had no problems with Valtrex, no stomach upset, nothing. But I’m wondering why so far it isn’t helping. I know there’s an initial worsening, but now it’s been 11 weeks already. Is it the weather turning cold? Who knows.

    My main symptom is crushing fatigue. My cognitive impairments are mild. I also have some pain. My mom has fibromyalgia, and her level of pain is certainly worse than mine. Another huge issue for me is light and sound sensitivity. I can’t go to malls or drive at night because of the sensory overload. I get sore throats. I also have problems sleeping, which I’m trying to address with a psychiatrist.

    I’m going to stop for now, otherwise I could keep going… I just wanted to introduce myself, and say how happy I am to have found this community. I would also really like to exchange ideas with Dr. Lerner’s patients. For all of you who have a long commute to get to him, I feel for you. I’m in the area, so let me know if I can do anything to help.
  2. yuckie

    yuckie New Member

    Hi Anita,

    So sorry to hear that you are suffering with this illness. Your story is so familiar even to the point that I had to stop working when I first got sick and went back in August of that year. Sadly, I only made it to the following February (2005) before I had to quit for good. I've since been receiving disability and spending my time trying to get better. I am not a patient of Dr. Lerner. I also have only had a few of the tests you refer to but I am not seeing a CFS specialist. My team consist of a rheumatologist and pain management doc.

    I'm glad you found us too! I have found this board to be a great blessing and a soft place to land when this illness gets to be overwhelming. Please take care, Janice
  3. Smurfette17

    Smurfette17 New Member

    Thanks for the welcome!

    Janice, at least you were able to work from Aug-Feb (not to minimize your pain or anything). I only mention that because I went back this past August at the start of the academic year-- after 1 day in the classroom, I became bed-ridden for 2 days and my mom had to come care for me.

    Sometimes I can't believe how surreal this illness is. I had soooo much energy. And now... nothing. I'm also applying for disability, hopefully it will come through.

    Today was a particularly bad day for me, so I'm comforted by this board.
  4. richvank

    richvank New Member

    Hi, Anita.

    Welcome, and I'm sorry about the impact CFS has had on your life.

    I hope Dr. Lerner will be able to help you.

    You might also be interested in looking at the glutathione depletion--methylation cycle block hypothesis for CFS and the treatment based on it. You can find internet references to my papers about it in my bio. My post of July 18, 2007 is still a pretty good update, though many more people have started the treatment since then, and a clinical research study has been done on 30 women who had both CFS and fibro diagnoses. We are analyzing the data now, and it's looking positive.

    I'm encouraging people with CFS (PWCs) to have the Vitamin Diagnostics methylation pathways panel run first to see if they have glutathione depletion and a partial block in the methylation cycle. A large majority of PWCs find that they do. I've posted contact information for the lab several times.

    If these issues are present, then I'm encouraging PWCs, together with their physicians, to consider the simplified treatment approach to lift the methylation cycle block and restore glutathione levels. This treatment appears to be helping over two-thirds of those who are trying it.

    So far I'm not recommending that antiviral treatment and treatment to lift the methylation cycle block be done simultaneously. There isn't much experience doing that, but the small number of people who have attempted it have found that the combined exacerbation of symptoms can be difficult to tolerate. I think it's better to do them sequentially if both are going to be done. It isn't clear yet whether both need to be done, and it may depend on the viruses involved.

    Incidentally, Dr. Lerner read my hypothesis paper at the January 2007 IACFS conference, and he told me that he thought it made sense.


  5. Forebearance

    Forebearance Member

    Hi Anita,

    I'm so glad to see you here! I wish I had known you were in A2 when I was there in October. I also began my CFS with mono. I tested positive three times in the first year, and then three years later tested negative, as if I had never had it. Weird!

    I hope that Dr. Lerner will do great things for you!

    I haven't ever gone to him, because I don't think his style would work well for me. I need someone who's more flexible, and doesn't only do prescription drugs. But as I'm sure you know, different things work for different people.

    One thing I really wish I had done was to rest right from the start and not try to go back to work. I think that if I had really rested well in those first few years, I might have gotten well faster. Instead, I pushed myself to go to school and then to work as much as I could. And now I've been sick over 18 years. Learn from my mistake! :)

  6. consuegra

    consuegra New Member

    Reading this message board can be terrifically helpful. Many participants can provide you with various options in which to move forward. I myself would pay special attention to diet (posts of MATN), intestinal dysbiosis and candida (posts of Barrowinnovations, recently changed to something else), and thyroid dysregulation.

  7. romalaw

    romalaw Member

    I second your assssment about resting in the beginning. I also think I might have fared better if I had rested more in the beginning. I think there's a tendancy when we first become ill to try and fight through it, which we learn after a while only makes us worse. I remember how foreign the idea of resting was to me. I had never been a person to nap or lie on the couch during the the day, so resting was something I was forced to learn. I guess I've learned it well since I'm lying on the couch right now with my laptop!

    I continued to work for six years (with a 6 month sick leave when I first got sick and another 6 mos. sick leave when I severely relapsed about 3 years into the illness. Looking back I don't know how I managed. I do function at a higher, more consistent level since I was forced to quit.

    Thank you for reinforcing the importance of rest, especially for someone newly diagnosed who is still trying to sort everything out.

    Hope you are well, enjoyed our lunch a while back!
  8. Forebearance

    Forebearance Member

    Thanks for seconding my message that rest is really helpful to healing.

    I hope you are doing well these days. Happy couch lying!