Thursday, June 3, 2010

Dr. Lerner, Lyme Disease, and other Doctors

I was surprised to see Dr. Lerner’s face on the front page of Phoenix Rising last week. A lot of doctors are mentioned on the forums there but I didn’t remember ever coming across his name in a thread. I read the headline “Lerner antiviral Treatment Trial Succeeds” with mixed feelings. Clearly this is good news:


“Long term antiviral therapy was effective - very effective - in many of his patients. Many of them, while not completely cured, are able to work and lead normal lives again - an astounding finding in this field. Some are completely cured.”


Still I couldn’t help feeling a little left out as I read the article. Dr. Lerner was the first CFS doctor I ever saw. But on my second visit, after two long drives to Detroit, he told me I didn’t qualify for antiviral treatment. Instead, I had erlichiosis, a tick borne disease, and should do six weeks of IV-doxycycline.


This was two years ago in May. A friend sent me some articles about his work, and we both got excited and made plans to see him. Every night between then and my appointment was like Christmas Eve, but instead of staying up late thinking about all new toys I’d be getting, I read the pateint testmonials page of Dr. Lerner’s website over and over:


“Today I am CFS free! Dr. Lerner gave me back my life.”


“My activities are not restricted. I can travel, exercise, and work. I need only a normal adult amount of sleep, as opposed to 10 or 11 hours.”


“After receiving treatment from Dr. Lerner, my CFS symptoms went into remission. I graduated from graduate school in 1998.”


And this one stuck with me the most,


“When I first saw Dr. Lerner I was so ill, staying awake was a big chore for me. I would sleep for 19 hours at a time. I would take a shower but be too exhausted to blow my hair dry.”


The last one was my favorite because that was one of my first symptoms in high school. Eighth, ninth, tenth grade, hair straightening was like my religion and accounted for 45% of my personality. For example, freshman year in the locker room I noticed a girl who I’d seen before with curly hair was now wearing it straight. We struck up a conversation about blowdrying, and we remain best friends to this day.


The trick was it had to be done right after you showered to get it just right. Those curls came on fast. And then in a matter of weeks, all I could do when I came out of the shower was collapse on my bed. Post-shower naps became routine. The word “enervating” became part of my vocabulary, as in, “Showers are so enervating!” I had to wear ponytails all the time and put lots of anti-frizz gel on my air-dried hair. And yet, it never occurred to me this was a sign I was sick. I know I was always saying then, “I think I have mono” but the doctor kept telling me I didn’t, so I believed her, that I was normal. So if I was normal, than everyone else must be incredibly vain to put so much precious little energy into cleaning and styling their hair! I am a brilliant rationalizer.


It wasn’t until six years later when I started having what I thought of as “physical symptoms” like constant pain, that made me finally realize there was something really wrong. Reading that testimonial is what really made me identify with CFS as a disease. “Chronic Fatigue” wasn’t very concrete, but “Oh! I have the ‘too tired to shower and blow dry your hair’ disease!” rung true.


My mom and I sat across from Dr. Lerner at our first office visit and he told me I was going to get better. It was hard to believe, but I believed him anyway. Even when he told me I didn’t have the right blood test results for the valtrex/valcyte program, I believed when he said that treating erlichia was the answer. It happens that I was bitten by a tick before my first symptoms appeared, a year to 18 months before I got sick really. I was on vacation with my family and we went on a horseback ride in Wyoming. My mother was cautious of ticks, and made sure we all wore long pants, but tragically, it was 1998 and flared jeans were all the rage, so the tick had no trouble flying up to my leg and latching on for a good few hours.


I was actually really happy to have this diagnosis. It made me forget completely about Dr. Lerner and Valtrex. I told all my friends and family I didn’t have CFS, I had lyme disease. But there were some problems, no doctor I saw in Cleveland agreed. Because I didn’t want to live in Detroit for six weeks to get IV doxycycline from Dr. Lerner, I asked if he’d write me a letter I could take to an infectious disease specialist back home. This is how I found out that Lyme disease was something of a controversy. No doctor I saw agreed with Dr. Lerner’s diagnosis. They said there was no such thing as Chronic Lyme.


Now it was all making sense. There had been a couple of times over the years where “What about Lyme disease?” had occurred to either me or my mom. But whenever I asked my doctors about it they’d say, “You don’t have lyme disease. Don’t believe everything you read on the internet.” or “There’s no lyme disease in Wyoming or Ohio.” And so that was that.


I read Cure Unknown. I watched the trailers online for the yet to be released Under Our Skin documentary. I was convinced that this was what I had. There were descriptions of symptoms in Cure Unknown that I really identified with. There was even a description of writer’s block like what I went through in high school:


Mark, meanwhile, was teetering at the brink of professional disaster. He’d spent twenty years writing for national magazines and health foundations in New York City, yet now was so blocked he was in danger of losing his job as editor in chief of the newsletter Bottom Line Health. His memory, previously detailed and precise, had become so spotty he had trouble following the train of a simple story.


And another one that summed up perfectly in a few sentences what had been my high school "sleeping problem" experience:


Our youngest son, David, began to sleep – first so long that he could not do his homework or see his friends; eventually, so much (fifteen or more hours a day) that he could not get to class. Violating the strict attendance policy at his prep school, he was asked to leave.


The only difference is I left prep school before they could ask me to leave. And then I slept through public school. Looking back, if I couldn't have been diagnosed with CFS, I'd much rather have been diagnosed with Lyme than with depression. I'd rather have taken months of antibiotics than months of antidepressants.


I read more about Lyme. In Peggy Munson’s blog I found this quote from Amy Tan about her experience with Lyme:


"By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery."


Again, sounded like me.


I even wrote an e-mail to Pam Weintraub, who wrote Cure Unknown and asked her what I should do. I’d been taking oral doses of doxycycline every day, but Dr. Lerner wanted me on IV. The only way to do that was if I moved into a hotel in Detroit for six weeks, he wanted me in the area. I didn't want to do that if I didn’t have to. But Dr. Lerner was adamant and said if it was him or his family, he’d do it. Pam Weintraub wrote me back and said that IV doxycycline made a huge difference for her son in a way that oral did not.


I was going to do it. My mom and I drove up to Detroit and looked at different hotels. Then I though I should get a second opinion from another “Lyme literate doctor”, ideally someone who would set me up with IV antibiotics at home. I made an appointment to go to Mt. Kisko , NY and see Dr. Daniel Cameron, the only doctor I’d read about in the book who was still treating patients. When I got my blood work back from him, it said I did not have erlichia, but I did have Bartonella and two others, I forget which. Now I was getting an idea of how unreliable these tests were. Still, I continued on oral doxycycline. Dr. Cameron didn’t think I needed IV anything and that was fine by me. Later we switched to Cipro.


After a few months of daily antibiotics, I didn’t feel much different. My skin was beautiful and clear, but my eyes were so sensitive to light I couldn’t look out the window. I’d heard this was a symptom of lyme disease, but to me it seemed to get worse with the antibiotics. I wondered if it was a “Herxheimer Reaction”. When I asked Dr. Cameron if the antibiotics could be causing light sensitivity, he said no. But it sure went away quickly when I went off them.


The whole lyme thing was just too complicated. If you’ve read Cure Unknown you have some idea of how hard it is to beat lyme with antibiotics. I went back to CFS. I heard about Dr. Enlander and was able to get an appointment with him quickly and start on hepapressin. A few weeks later it was time for the appointment with Dr. Chia I’d scheduled 6 months earlier. Dr. Chia is the only CFS specialist I was referred to by an actual doctor. When my endocrinologist couldn’t find anything wrong with me she had said, "Dr Chia is doing some wonderful things for CFS."


I liked Dr. Chia, but I didn’t do his protocol, the oxymatrine. He said since I was on hepapressin it was basically the same idea, I should keep it up, and if it didn’t work, try the oxymatrine. I still have the prescription, but by the time I finished the hepapressin I was already moving on to Dr. Cheney. During my visit I told Dr. Chia how I’d been on antibiotics for lyme disease. He told me the thing about lyme disease is that anyone will feel better when you put them on antibiotics because they are anti-inflammatory.


My mom did call my doctor when I got a tick bite, but the doctor said the same thing then they say now. If there’s no rash or flu symptoms, don’t worry. So we didn’t. For a long time I thought that if I had gotten antibiotics early on I might never have gotten sick. Now I’m not sure.


I forgot about Lyme for awhile, but when Under Our Skin came out I still wanted to see it. I went to the LA premiere in a little theater on Wilshire. I’m sure there were less than fifty people there, probably less than forty. I cried through the whole thing. I think a lot of the audience did. I don’t remember much about it now, but I walked out with a green rubber bracelet. If I ever get another tick bite, I’m going to want some doxycycline, just in case. But I don't tell people I have lyme anymore, I'm in the CFS camp.


21 comments:

  1. Alison
    I really think you should read Jamie Deckoff Jones blog on Lyme disease.
    She and her husband and daughter were treated with long-term abx for Lyme and she now thinks that was a very bad idea. In her husband's case, it seems to have triggered C-difficile.

    http://treatingxmrv.blogspot.com/2010/05/thoughts-about-chronic-lyme-disease.html#links

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  2. Thanks for the link Charlotte! I've read some of her posts but didn't know about that one. I had a part of my blog where I said how I thought XMRV was the "puppetmaster" and the TBD's were opportunistic infections but I thought I'd leave the theorizing to the doctors. She said it much better than I did!

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  3. I am so sorry about the long road to health you are on. As someone who has had CFIDS/FMS for over 20 years I know how challenging that can be.

    Your ability to assume a lot of material and understand it and make the best choice for yourself is inspiring.

    I really am enjoying your blogs. I can tell you think about things a lot (as I do) and that you ponder all the different sides when making your decision.

    You are an amazing young woman. I'm glad that I have 'made your acquaintance."

    I hope we all are able to find a cure someday soon and live the full lives we all dreamed about.

    Until then, I will be back to read your next post.

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  4. I have both Lyme and CFS as well, but I've never really fit into the Lyme camp somehow. It can all be so confusing. I was on antibiotics for several years with no improvement, regretfully.

    I cried through the entirety of Under Our Skin too. It was quite cathartic. :)

    Keep up the thoughtful posts... you write so well, Alison.

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  5. I a) adore your posts and now want to see Under Our Skin and b) hope you are doing okay! xoxoxoxoxoxo

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  6. Thanks so much Dominique, Laurel, and Annie for the encouragement! :)

    I might do a second post about the whole Lyme CFS confusion but I'm not sure yet.

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  7. Wow, what a story, Alison!

    I have no idea if I could have Lyme or not. But I tried to get in to see Dr. Peterson in Nevada but fell through the cracks somehow. After mailing my ap in 2006, being told it was a 6 mo. to a year wait, trying to inquire about my place in line via letters and calls since then, I have yet to hear a peep from his office. It would be SO GREAT to connect with a doctor just once in my life who could truly diagnose me and help me. Like most of us, I was told by an M.D. when all my tests came back normal, "You have CFS, it's all in your head, go see a psychiatrist." That was in 1998. Since getting back into blogging, I am learning so much here, and getting so much inspiration!

    Judy

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  8. Judy,

    Wow! Never tried to see Peterson but yeah, that's a long wait, about the same as Chia and Cheney but at least at the end I heard from them. Though I guess things are kinda in transition for Peterson now. I heard he'll be seeing patients in the fall...I think.

    Now that we know about XMRV I really don't think it matters whether you have lyme and hhv6 and EB and all those other guys. I think everyone with CFS, or just everyone in general, tests positive for some kind of TBD's.

    Glad you are blogging and learning a lot!

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  9. I have found that a lot of doctors don't really believe in fibromyalgia and they seem to think I was making it up, but the book "Beat Sugar Addiction Now!" is written by a doctor and he knows so much about it. I feel like I learned a lot about my own body just by reading the section on FMS, and it made me annoyed that no one had told me this before. I started reading the book because I thought it was a diet book and would maybe help me lose weight, and if I wasn't carrying around so much weight maybe I would feel better overall and be less achy. But it's actually a whole part on fibromyalgia is in it and I learned a lot about my hypothalamus that I never knew before. The information is good and smart science but not too hard to understand. You need to find help if you have what I have-so much pain it hurts to pull my shirt over my head or bend down to tie my shoes. I had to start wearing ugly crocs just because they were easier to put on and more comfortable, and that is not who I wanted to be-a fat person in unstylish shoes who has trouble getting in and out of the car. I feel like if I can find a doctor who will help me and I can do what it says in this book, I will get a lot better. It is written very convincingly and you can tell he knows what he's talking about. Plus he has a list to help you find doctors that treat FMS and I am ready to get treated and stop feeling like my nerves are exposed every time I move. Here's the website for Dr. Jacob Teitelbaum: http://endfatigue.com/

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  10. Hi Alison

    Can you tell me more about Under Our Skin? Ive not heard anything about this before. Learning lots on here by blogging also, its fantastic! x

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  11. Hey Vikki, It's probably best to watch the trailers and excerpts at the website. There's a link in the blog but it's just www.underourskin.com The stories of the people in it being treated for lyme are very similar to CSF stories. I've heard that at least one of the doctors in it said that all of his chronic lyme patients tested positive for XMRV.

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  12. I gave you a blog award today Alison :)

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  13. I cried through all of Under Our Skin too, so I know how that feels :S.

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  14. hi alison. thanks for yr blogging. it is really really great!!

    i can relate to soooooo much of it. i went thru many of the same experiences.

    warmly,
    rrrr

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  15. It's funny how I came across this article. I was actually looking up articles on hypergraphia...as I have been effected by this for some time now, along with bouts of insomnia, followed by sleeping for 16 hours at a time.

    Anyhow...I read an article that you wrote about Hypergraphia...then came across this one where you happen to mention Lyme. As I was reading your first article I kept saying to myself...'this girl has Lyme'.

    I was first given the CFS diagnosis as well...positive XMRV, elevated ANA...etc. It wasn't until I mentioned to one of my doctors that I had noticed I had a positive band for Lyme showing up in my bloodwork that I first started reading up on the disease. Once I was convinced that this is what I was dealing with, as opposed to CFS, I had more bloodwork done through Igenex lab. Sure enough...I tested positive..even according to the CDC's rigorous standards.

    Anyway...love your blog! Feel free to contact me @ theartistambernicole@hotmail.com if you have any questions about Lyme..or just need to vent. My name is Amber, by the way...I'm 30 years old and have been sick since I was 23. *that last sentence was just thrown in to assure you that I'm not some weirdo* ha!

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  17. So do you think Dr Lerner is a good doctor?
    reason I ask is someone suggested I see him I have fibromyalgia for over 26 years and also many arthritic conditions including degenerative disc disease which has really impaired my life.

    I am drug sensitive and take nothing for pain as i am ill...from it.

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  18. please if you have any advice on seeing this doctor let me know your thoughts.. DR Lerner.
    my name is di.
    i am not signed up on bloggers so will check back...hopefully you can leave a note.
    thank you.

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  19. Hello Di,

    I think I pretty much related all that I can in this blog. Did you click on the first link, "Lerner antiviral treatment trial succeeds?" Basically, if you go to him, and you have the right blood test results, hhv-6 viral load, he will put you on valcyte or valtrex. My levels weren't right. My friend went the same time as me though and he's been on valtrex three years now and it's helped him, even though he's been drinking the whole time and you are REALLY not supposed to drink while on these meds because of your liver. He has been honest with Dr. Lerner all these years and at their last visit Dr. Lerner says if he doesn't stop drinking he won't prescribe him the medicine anymore.

    He's worth a visit. He's very nice and you'll get a thorough exam and blood work and chest x-ray. I know he's interested in XMRV, but I don't know what his thoughts are on treating it. Dr. Lerner actually had CFS himself, so he is very understanding.

    I'm afraid I don't know very much about fibromyalgia. I'm not sure if this was Dr. Lerner or Dr. Chia or both, but if you call the office, you have to say you have chronic fatigue syndrome of they wont' see you.

    You said you were drug sensitive. What about herbs, acupuncture, cranio sacral? I've found them to be at least as helpful as tylenol.

    I assume you are already seeing a rheumatolgist if you have arthritic conditions.

    I'm sorry I can't remember how much it cost to see Dr. Lerner. I'm pretty sure he took my insurance, Blue Cross.

    I don't know if his treatments are right for you based on what you've said here, but I do think Dr. Lerner is a good doctor. It will probably be good to hear what he has to say. If you see him he'll take a very long history.

    Let me know if you have anymore questions.

    The good thing about Dr. Lerner is that it doesn't take long to get an appt with him. I've often had to wait a long time in the waiting room though.

    Alison

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