Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Oct 29, 2008.

  1. SpecialK82

    SpecialK82 New Member

    Just to recap - I have FM and CFS and re-activated EBV. I have been seeing Dr. Lerner for 3 months now. I have been on Valtrex for 8 weeks.

    My fatigue and muscle weakness have worsened since starting Valtrex, as expected. The first 2 weeks were the worst, and then it got a little better but I am still not feeling as good as my pre-Valtrex days.

    I have been having major GI problems since I started. I have had lots of gas pressure, bloating, pain in my lower abdomen and then more recently in the past few weeks, I am experiencing upper abdomen pain around the sternum and ribcage. I have had the upper abdomen pain before and recognize it as GERD problems but don't know if it's a result of the lower GI problems??

    So, I saw Dr. Lerner this past Friday and told him that I was pretty miserable. He advised me to start taking 2 Nexium a day for the GERD, and to stop taking Valtrex for one week and then start it back up again. I am already taking 1 Prevacid a day but he wants me to change to Nexium.

    Of course, when I took the Nexium script to my pharmacy they told me that my insurance won't allow that dose and they will need all kinds of documentation, etc. from Dr. Lerner as to why it's needed. Thank God my insurance company is looking out for my well-being - it's so reassuring LMAO!

    Anyway, I stopped the Valtrex (which I'm hugely bummed about) and the pain is just getting worse, so I decided to call my GI doctor and get his opinion. I have had to have a few upper GI scopes in the past for GERD so they are familiar with my history. Unfortunately, I cannot get an appt with him until Dec 10!

    My GI doc wants me to increase the Prevacid to 2 a day and will fight the insurance for me. However, I am still worried that I may have some sort of yeast infection going on in my gut. In the past 4 months, i have developed a white coating on my tongue, and have had 3 vaginal yeast infections with no apparent cause. (I usually will only get one if I am taking antibiotics). The first yeast infection, was before Valtrex so it could be something unrelated to Valtrex, or Valtrex is just exacerbating it.

    I cannot find a doctor that is willing to give me an antifungal - both Dr. lerner and my GP do not think the white tongue is anything.

    I told Dr. Lerner that I hated to go off Valtrex and he said that I would be taking it for a long time and that we had to make me comfortable first and safety is priority. As I am having more stomach and chest pain this week, I agree with him 100% and am getting a little scared as to what is wrong with me. I have started taking 2 Prevacids a day just from the bottle that I already have and I don't feel much improvement.

    Well, back to the visit - sorry for the long post. My holter monitor showed T wave flattening as expected. Dr. Lerner said that this just confirms the diagnosis and that we are on the right track. My EBV test that he did after 4 weeks of Valtrex was 99, the first one was 98. He said that this difference doesn't mean anything as it is within the margin of error. The 2nd CMV test came back negative just like the first.

    I do not think that I should go back on Valtrex until my stomach is 100% improved. I am in too much pain now to ignore it and hopefully I'm not doing any damage. I need to get some sort of test to see if I have something else going on - I left another message with my GI doc today that my stool (sorry to be gross) has been kind of whitish for a few weeks and also has some mocus in it. If anyone has any ideas what this is, I would love some feedback.

    Thanks for reading.

    [This Message was Edited on 10/29/2008]
  2. SpecialK82

    SpecialK82 New Member

    thanks for the replies ladies. Cindy, I'm hoping to find an alternative doc around here that can treat me - I am worried though that dr lerner won't like it so not sure what to do. I haven't heard of Vitamin C IV's, that's interesting.

    My GI doc's office called back today and he told me to take 2 Tablespoons of Benefiber and eat 1 -2 yogurts a day. I've already stepped up my yogurt eating a while back so I know this is not strong enough. I guess I will try the Benefiber but don't have a lot of confidence that it will do what I need.

    Grammy - I am so happy to hear that the CS worked so well for you! That's amazing and you even have the lab work to prove it! I am so chicken of taking CS because of the whole blue thing - I'm worried about dosing myself. Did you have the guidance of an alternative doc to help you or did you figure it out on your own?

  3. spartanjt

    spartanjt New Member

    SpecialK82 - If you're looking for a good holistic doc, who is very knowledgeable on CFS/FM, you may want to look into seeing Dr Conley in Flint MI. He helped me a tremendous amount when I first saw him back in 1997.

    His approach is more of an overall symptomology approach & gut/intestinal health is one of his primary fields of expertise. Try reading his book "America Exhausted" first, & see what you think of his approach. He is pricey to see, but can be very effective in treating CFS/FM.

  4. SpecialK82

    SpecialK82 New Member

    Thanks so much for the name JT! I will look for his book.

    Hugs, Kristina

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