DR. LERNER Visit 3

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Sep 28, 2008.

  1. SpecialK82

    SpecialK82 New Member

    I went back for my third visit to Dr Lerner two days ago. Just to recap, I have FM and CFS with high titers to EBV. 4 weeks ago at my last visit, Dr. Lerner started me on Valtrex, 1 gram 4 x daily and on Tagamet 2 x daily as a pusher.

    During the first two weeks the muscle weakness and fatigue increased significantly, these symptoms eased some in the third and fourth weeks but I am still not back to my pre-Valtrex level. I've also had GI problems early on and has continued through the treatment - gas, pressure, pain with some constipation/diarrhea. Additionally, have a white coating on my tongue that I believe is thrush.

    Dr. Lerner looked in my mouth but didn't seem to think anything of the thrush and did not prescibe anything for it. He said the GI problems could be attibuted to the Valtrex and offered to switch me to Famvir. He said about 1 in 15 patients have some diarrhea with Valtrex. He assured me that the Famvir is equally as effective as the Valtrex, so I decided to switch. He also told me to stop taking the Tagamet (I assume because of the GI issues) but the reason was not made clear.

    Dr. Lerner was very happy to hear that my symptoms were worse with the Valtrex and visibly excited when I said that the first two weeks were the worst and then some improvement was made. He was very pleased with that pattern.

    I asked how long it would take for me to feel significant improvement. He said that in 6 months I would feel improvement and then it would continue on.

    He also mentioned that a new video containing more detailed information will be on his website, it's the 2008 London presentation. I just checked and it is out there now at cfsviraltreatment.com. I found the video interesting but was a little disappointed that the screen size is so small that it makes reading the slides difficult.

    In watching the video, I was impressed to hear that the American College of Physicians has asked Dr. Lerner to be the expert to evaluate all CFS papers for the website.

    One comment at the end of the video that surprised me was that only 35% of his patients have been able to stop or lower the AV dosage once substantial improvement has been made. The rest have to continue on full treatment dosage indefinitely!! What a bummer - I was not prepared to hear that. I can't imagine that an insurance company would pay for this for years and years. Anyone that has been on AV's for a long time, please let me know how much push back you are getting from insurance. Good thing that Sue (ladybugmandy) reported that there will be a generic version of Valtrex out in June 2009! Haven't heard anything about Valcyte...

    I think I need to pursue getting treated for yeast with a local doctor but not sure where to go. If anyone knows of a good doc around Southern OH please let me know. I really need one that treats CFS overall for my basic treatment plan, but would love one that also treats yeast issues.

    Thanks for reading,


  2. ladybugmandy

    ladybugmandy Member

    hi kristina,

    thanks for the post. i am glad it went well.

    i watched the video on dr. lerner's website but do not remember him stating that 35% of his patients have to stay on the full antiviral dose forever. i will have to watch it again.

    it is doubtful that you will stay on valcyte for years and years - it is toxic. i don't think dr. lerner would give it to anyone longer than 3 or 4 years. usually, it's valtrex that's taken long-term (or famivir?)

    i did not know famvir was as good as valtrex for EBV but i always wondered. thank you for the valuable new info:)

  3. Atlanta8

    Atlanta8 New Member

    I didn't know about the 35% statistic either... (the video was slow loading, and I got disconnected half way through - twice!). That's a bit concerning. Perhaps it's because he doesn't address the gut issues at the same time? From what I've read here, they seem very important indeed, so perhaps it's a combination of the two treatments that is needed?

    One to help the body get the initial infection under control (the AVs), the other to equip the body so it can maintain control of the infection (diet).

    Am off to see a nutritionist in a couple of weeks so will get her opinion on it. I've also posted in Karen's "Toxic guts, toxic body..." thread, to get her opinion on it.

    Gahh, just as I think I've made my mind up on a treatment plan, something comes up to make me doubt it!
    I was going to get thyroid and gut sorted out, and 3 months later see Dr Lerner for virus help. Now I'm thinking I should wait longer until I see Dr Lerner, but I don't want to leave it too long so it becomes harder to treat!

    Sorry - hijack over Kristina! :p

    I regards to your question, I would say, get a comprehensive stool analysis done. See the "Toxic guts..." thread on here for more info. It really does seem the best way to find out what's going on there. Karen is treated by a Dr Farr, but I think he's happy to treat you over the phone if you don't live locally. He'll tell you what tests you need and recommend appropriate supplements for you.

    Glad to hear your initial AV results are promising, though! Perhaps you should ask Dr L about the 35% thing next time you see him?

  4. SpecialK82

    SpecialK82 New Member

    Thanks for the replies. Sue - I think Dr. Lerner said 15% can get off AV's altogether and 20% can go to a reduced maintenance dose, it's at the end of the presentation during the question phase.

    Kelly, I will try your ideas for yeast. Swirling it around the mouth is a good idea - at least it feels like you are doing something. I'm trying to eat a lower carb diet now, but it's difficult coming up with new things to eat. I have not tried to give up carbs/sugar completely as I might start crying from withdrawal :)

    I actually stopped taking the Tagamet on Friday but since I have 2 weeks of the Valtrex medicine left, I'm going to go a week solo on Valtrex to determine if Tagamet was the culprit before I switch to Famvir. I tried giving up Tagamet for a few days last week but I don't know if the trial was long enough and didn't feel a difference.

    I'm now getting a lot of skin irritation - itching, burning all over. This started before the Valtrex but has gotten considerably worse. Does this sound like yeast as well?

    Kelly - my holter moniter went well, I had it put on Friday and returned it on Saturday. It was difficult to walk for 15 minutes in the state that I am in now, I didn't walk very fast but I'm sure my heartrate increased. Hopefully there will be enough data, I'm interested to find out about my T waves.

    Love Kristina

  5. SpecialK82

    SpecialK82 New Member

    Hi there. I think it is wise that you are approaching it in two steps. Get the gut and yeast under a treatment plan, there can be a yeast die-off period at the beginning when you feel worse, so I think it's good to get through that. Then go ahead and add the antivirals.

    If you see Dr. Lerner you can just list the meds/supplements as meds you are already taking and I would think he would be fine with you continuing them. I'm a little concerned to go through a yeast die-off period now this early in my AV treatment as I don't want to do two treatments at once and not know which is working or worsening.

    Nice to hear the Dr. Farr will treat over the phone. Will he also write an order for a comprehensive stool anaysis? I think that would be extremely beneficial.

    Thanks, Kristina

  6. chrissy12

    chrissy12 New Member

    I was very interested in the part of the video where Dr. Lerner said so many stayed on anti-virals. Did I hear it right, some stay on full dose??

    In your bio, you stated you started with tingling in parts of body. I never tied that into CFS, but I had that problem 6 months before I completely crashed. I don't have it anymore, but I have been with Dr. Lerner for about 7 months. Hopefully, the valtrex you are taking will help with that problem.

    I have a good friend who, I believe has FM, maybe CFS. Does Dr. Lerner think viruses are part of FM? I'm really not sure, do you know???

    I am glad you are seeing Dr. Lerner. You are in the right place.

    Take care, Cindy
  7. Atlanta8

    Atlanta8 New Member

    Yep he will order the tests for you from Genova labs. He'll only order the ones he thinks are necessary, too. I think he sends you a 600 question form to fill in aswell!! Then you have a phone consultation where he'll run through all the results and draw up a protocol.

    I think it's a good idea to get your gut checked out - even just to find out what's going on, so you can make a start on slowly reducing bad foods/ getting the supplements you need to improve. And I know what you mean about the sugar! haha

    Best of luck for the rest of your treatment,
  8. SpecialK82

    SpecialK82 New Member

    Hey Cindy - Great to hear from you, I've been wondering how you've been doing up there? Hopefully you have been able to get out some and enjoy the weather, it was beautiful up there last Friday and Saturday.
    Yes, Dr. Lerner says that he believes FM and CFS are the same thing and that they both are caused by infections. I was very happy to read that you have a friend that is doing much better at 17 weeks with Dr. Lerner. It helps so much to get some hope at this stage.

    Dr. Lerner did say most have to stay full dose on the AV's (it calculated to 65%). It's a little overwhelming to consider that at the moment, so I'm just taking it one day at a time. I hope your IV treatment is kicking bu##!

    Altanta - I am definitely going to check into Dr. Farr and read back over those posts. Thanks so much for the info and well wishes!


    [This Message was Edited on 10/01/2008]
  9. chrissy12

    chrissy12 New Member

    I just returned from Dr. Lerner's and yes, this IV is kicking my bu#*. I told Dr. L. how bad how I felt and he did a stat on my bloodwork and everything is okay, so he said the ill feeling is a result of the treatment.

    When I get through this, I do not want to hear the words,"You have to get worse before you get better." I have heard that a lot in the last 2 years. It is definitely getting old.

    Yes, the weather up here has been beautiful!! I don't get out a whole lot, but my sister took my dog for a walk daily and loved it. She is from Colorado.

    I was happy to hear that FM is also due to an infection. I have a really good friend who suffers from it and I will tell her about Dr. Lerner. Maybe, she can get help.

    Keep us posted on your treatment.

    Take care, Cindy
  10. Atlanta8

    Atlanta8 New Member

    I agree with you - from what I've been reading recently, it seems that diet (and gut problems) should be taken more seriously by Dr Lerner. I'm a little disappointed that he is so quick to dismiss it. The fact that patients can improve on AVs and decline when they stop shows there are problems with the immune system... The obvious thing to do next would be a gut evaluation to ensure the patient is getting enough nutrients to support their system, not more AVs.

    This is the one problem I have with him - I'd have thought someone so open to new ideas and research in this field would be happy to look into "alternative" medicine.
  11. SpecialK82

    SpecialK82 New Member

    Yes, I believe you're right that he is not focused on all the issues that go into CFS. He only sees the infection portion which I believe is a substantial piece, but there has got to be something wrong with the immune system for the infection to take hold to begin with, and possibly that's why it comes back when off of AV's?? That's a good question. There are so many different systems that are out of whack with CFS that it's very difficult to determine the root cause - which came first.

    Dr. Lerner believes that an infection triggers FM/CFS but I tend think that there was already a break-down in the system somewhere first that then allowed these viruses to reactivate.

    On the other hand - if our immune systems are so weakened, why are we not catching every cold and flu bug that come along?

    Regardless - it does seem that we need to do address multiple pieces to the puzzle.

    [This Message was Edited on 10/01/2008]
  12. Atlanta8

    Atlanta8 New Member

    I think it would vary between patients as to what triggered what. Everyone's body/ lifestyles are different which is why the need for subtypes is very important in being able to maintain the improvement after AVs. Like you said Kristina, they are a major factor in treatment, but not the whole puzzle.

    To me it would be logical that trauma/ stress/ unhealthy lifestyle would weaken our immune system, but we can just about cope normally (even if we catch a lot of common colds etc) - then we get the "trigger" virus (eg bad flu, mono...) which is the final nail in the coffin and takes over our bodies. We're no longer strong enough to put it back into latancy as it's in too deep, and all these other viruses start attacking as well.

    Before I got mono last year, I caught loads of viruses, colds, tonsilitis etc, and was sick with something every couple of weeks. Since mono I've not had a single proper virus - I'll catch things occasionally but fight them off very quickly and they never really develop into anything.

    So: my immune system was really low before mono (I was at uni, so you can only imagine my lifestyle!) - since, my body can see this major infection and is working overtime to try and get rid of it, but just isn't strong enough for EBV. It would explain the constantly swollen glands I have, too.

    As I've mentioned before on here, I'm going to spend a few months getting my gut sorted before I go and see Lerner, so I stand the best possible chance at recovering. Watch this space! :p

  13. ladybugmandy

    ladybugmandy Member

    m0joey ... dr. lerner believes that some people have a genetic defect that renders them unable to induce latency of some of the herpes viruses. consequently, many need to be on antivirals for a long time or forever, presumably at a lower dose, just as people with genital herpes have to.

    specialk....i think the reason we do not get many viral infections while we have CFS, is because our cells are releasing interferon (a natural antiviral) to combat our viral infections. this helps protect against other viruses also.

  14. SpecialK82

    SpecialK82 New Member

    Sue - "dr. lerner believes that some people have a genetic defect that renders them unable to induce latency of some of the herpes viruses. consequently, many need to be on antivirals for a long time or forever"

    That makes alot of sense - I guess he spoke to that to some degree in his london video but I understand it better when you put it that way! Also, would follow that we can still fight off colds.

    I guess I still don't understand the AV treatment exactly. The AV's stop the virus from replicating but how does the viral load actually go down? Do the AV's also put the active virus into latency? Does your own interferon/immune system put them into latency with the help of the AV's?

    It would seem that we would need gene therapy at some point...


    [This Message was Edited on 10/02/2008]
  15. ladybugmandy

    ladybugmandy Member

    hi kristina:)

    yes gene therapy would defintely be great for us when it happens!

    to be honest i am not totally sure how the AV's work (the awful brain fog makes it so that i can't retain anything!)

    each virus only lives so long. it tries to enter the next cell and some of the antivirals prevent it from doing that, while some prevent it from reproducing at some stage of their lifecycle.

    the latent ones that rest inactive inside some cells cannot be touched with current medication, which is why we need to take it for a long time or forever.

    there are some trials that are trying to awaken all the virus and then give antivirals to eradicate it from the body.

    i heard of one such attempt that was made with a young boy who had major complications with EBV. he ended up dying....so waking up all the virus probably isn't a good idea.

    on the other hand, they are trying it with HSV1, which might work....

  16. SpecialK82

    SpecialK82 New Member

    Hey Sue :)

    Yes, this brain fog is the worst - I have to hear something a few times before I have hopes of retaining it, and it's still shaky.

    I had no idea that viruses only live so long! So they have some sort of life-cycle and then die on their own? That is truly good news - so that's how it can decline when it can't replicate. Hallelujah!

    I've read that too about waking up the virus. That sounds very scary to have done. I didn't know about the HSV1, would love to hear how that turns out. This research is fascinating - I would love to be a medical scientist if I had the brain power and energy...

    Love, Kristina

  17. SpecialK82

    SpecialK82 New Member

    Hey znewby!

    Thanks for the post - I was just wondering where to look it up!

    Too bad it isn't applicable to our viruses but I would think any advances in these virus treatments could help our cause in some way.

    Hope your daughter is doing OK :)

  18. ladybugmandy

    ladybugmandy Member

    how i wish i had started treatment when i was a 5 on the scale!!! your daughter has youth, better health, and a great family on her side. how can she lose?

  19. ladybugmandy

    ladybugmandy Member

    hi znewby..

    i don't really fit into lerner's scale very well. i couldn't even work 40 hrs a week before the CFS due to major depression.

    my CFS was stable for a long time. i had brain fog but the fatigue wasn't too bad. i was able to do light exercise and work about 20 hrs a week for years. i am not sure what number this would make me on lerner's scale.

    in 2006, i went through a tremendous amount of stress due to personal issues and after that, my CFS began declining rapidly. this is when i began to seek treatment.


  20. ladybugmandy

    ladybugmandy Member

    {{{znewby}} thank you for the compliment..but truthfully, i could not have done this without my mom's help and financial support.