Dr. Lerner patient update..

[anncavan]

bee33, I'm so sorry to hear you've had CFS for 25 years, and are not progressing as you'd like. I can't imagine. I'm just at the beginning of my journey. I guess the consolation prize to all of this is that we have each other, this community to lean on.

I want to make sure I haven't misrepresented Dr. Lerner in my postings. I can understand your frustration at the situation. However the last thing he is intending to do is offend anyone. He suffered from CFS 25 years ago and since he made it through his approx 5 year battle he went to bat for all of us who can't. He's the most compassionate man I've ever met. He never rests. For example, he spent all of Easter weekend (Friday, Saturday and Sunday checking on me after I had an unexpected side effect from a new medication). After unsuccessful visits with about 15 different "specialists" I started making the trip from CA to MI every 6 weeks and haven't looked back. The only reason he created this chart was to help follow progress in his office. After many people asked him to, he shared it.

Right now I sit in the 3 range (Out of bed sitting, standing, walking 2 - 4 hours per day). That means on my bad days I can only sit out of bed for up to 2 hours total. Not necessarily in a row, but total. And on my best of best days, when I add up all the times I've been up and down - whether to the bathroom, to a doc appt, grocery shopping, dinner, whatever - it adds up to at most 4 hours. As you can see this is quite a range. You don't move quickly from one level to the next. Also, as a sidenote, when creating a tool like this, it must be verified by a peer-reviewed journal. It was published in "in vivo" - basically it talks through the creation of the EIPS. It was based off the FSS (a fatigue scale used for MS among other things) that takes into consideration the amount of calories burned per level. There were specific caloric ranges that need to be met in each level. He chose to use the descriptors that CFS patients can relate to (sitting, standing) that meet each range instead of caloric burn.

Whomever told you that you were a 4, they were wrong. I'm very comfortable stating that. One other thing that's important is that this is something to use with a physician, not on your own. You/they need to take into consideration the exhaustion that mental expendability can have on you in addition to walking, etc... when you start bringing in the idea of work. I tried returning to work once, before I was in a responsible doctors hands. I did it way too quickly and it backfired on me. This was before I understood the seriousness of pacing and recovery.

I hope this helps. And if there's anything I can ever do, please feel free to drop me a personal email. We're all in this together!


I hope this hasn't aggrevated the situation. I just wanted to be sure that I didn't say anything to misrepresent my doctor. He has committed his life to helping others. He is one of the few good guys out there.

 

[consuegra]

Anncavan,

Thank you for your posts on Dr. Lerner. He is a very fine doctor and a compassionate man. I wonder if you could relate how you are able to make the journey to his office. At your level on Energy Index, how can you do this trip?
Thanks,

Chris

http://cfspatientadvocate.blogspot.com

 

[Jerry S]

Anncavan,

Thank you for your posts on Dr. Lerner. He is a very fine doctor and a compassionate man. I wonder if you could relate how you are able to make the journey to his office. At your level on Energy Index, how can you do this trip?
Thanks,

Chris

http://cfspatientadvocate.blogspot.com

Thank you very much, Anncavan, for your informative posts. I, too, am very interested in how you manage the trip and arrangements to see Dr. Lerner.

I'm in Chicago so the physical distance is not that far, but, without anyone to help me, I find the notion of traveling to a distant city for a doctor's appointment overwhelming.

I would appreciate any experience you can give.

Thanks again and best wishes,
Jerry

 

[dhearns90]

Hi everyone,

I am impressed with Dr. Lerner's results and resume and am considering becoming a patient of his. I am a bit hesitant however since I have tested negative for HHV6, EBV, CMV, and XMRV (though VIPDx) and his focus seems to be treating these viruses. It does seem that my condition is viral, I am just not sure if he would be able to help me. Thoughts from patients or anyone else would be appreciated. Thanks!

 

[Hysterical Woman]

Hi everyone,

I am impressed with Dr. Lerner's results and resume and am considering becoming a patient of his. I am a bit hesitant however since I have tested negative for HHV6, EBV, CMV, and XMRV (though VIPDx) and his focus seems to be treating these viruses. It does seem that my condition is viral, I am just not sure if he would be able to help me. Thoughts from patients or anyone else would be appreciated. Thanks!

Hi dhearns,

I believe that the viral tests that Dr. Lerner uses are different from what a lot of other labs use. If I am not mistaken I believe he might have even worked with the development of those tests? Other Lerner patients might be able to enlighten us?

Good Luck with whatever you decide to pursue.

Hysterical

 

[dhearns90]

Thanks sickofcfs and Hysterical Woman, you're posts were very helpful. I got an appointment for mid-July! I think I would be a good candidate for Valcyte since I am fairly young (under 30) and have only been sick about nine months, after a sudden flu-like onset. Hopefully they will find something, I'm tired of all my tests coming back negative.

 

[dhearns90]

Well, unfortunately I did not have a good experience with Dr. Lerner. I went to see him back in July and he ran his standard tests. I tested negative for EBV and CMV, and only slightly elevated HHV-6, which he said was insignificant. I did test positive for mycoplasma pneumoniae and adult rheumatic fever however. He came up with a treatment plan for these infections that I was to give to an infectious disease doctor in my hometown to administer ( I was traveling to Michigan to see Dr. Lerner and the plan called for weekly IV therapy). My hometown doctor disagreed with Lerner's plan and said that it showed a poor understanding of the infections. He explained that what the positive tests were showing was an immune system response to the infections, that the infections themselves had already come and gone. I was showing no symptoms of them, only an elevated immune response. I am not a doctor but what he told me made a lot more sense than what Dr. Lerner was suggesting.

I found it very difficult to ask Dr. Lerner questions. He seemed to just tell you what was wrong with you without really explaining anything. His short responses to your questions are very irritating as well. It was like he was rushing through the appointment. He told me that since I tested negative for EBV, CMV, and essentially for HHV-6 that I did not have CFS which is absurd. By definition I have CFS.

Dr. Lerner might be great for people with EBV, CMV, or HHV-6. Treating those viruses seems to be his specialty. For me however, he was unhelpful. I do think that it was good to be tested for the three viruses and other infections so I have to give him credit for that. Overall though, I was dissapointed and would not recommend him.

 

[SOC]

My hometown doctor disagreed with Lerner's plan and said that it showed a poor understanding of the infections. He explained that what the positive tests were showing was an immune system response to the infections, that the infections themselves had already come and gone. I was showing no symptoms of them, only an elevated immune response. I am not a doctor but what he told me made a lot more sense than what Dr. Lerner was suggesting.

Dr Lerner is an infectious diseases doctor. He should know more about infectious diseases than your hometown doctor, assuming your hometown doctor is a Primary Care Physician. PCP's often have rules of thumb that apply to healthy people, but are not appropriate for PWCs. You should probably consider checking with an infectious diseases doc in you hometown before you completely dismiss Dr Lerner's recommendations.

I won't disagree with your desire not to work with Dr Lerner again; some relationships work, and some don't. Even the best docs and patients aren't always compatible. :Retro smile: Dr Lerner definitely has his own style.

 

[heapsreal]

Your meeting with dr lerner looks quite successful to me, your basically negative to the herpes viruses and he picked up mycoplasma and rheumatic fever, now u have something to shoot at. These things can be treated with oral antibiotics, iv's sort of speed up the process. Maybe u could email dr lerner and ask for a good doc in your area who will treat u with abx. Doxycycline is one antibiotic used for myco and its very safe and cheap and should be easy to find a doc who would atleast prescibe u that, it is used long term as well as in 12 months sometimes longer. Did u get a natural killer function test(not just numbers) if this is low it can also be treated with immune modulators. If your in the states i would also try and look at getting an xmrv test. For him to say u dont have cfs is not correct, just u dont fit into the subset that he usually treats. If all else fails, try to educate yourself as much as u can on mycoplasma and rhuematic fever and maybe look at try to treat yourself like alot of us do to a certain degree. There are some good sources of antibiotics on the net that dont need prescriptions.
http://www.immed.org/ this guy has some good info on his site about mycoplasma, u might even find a good doc reading through his site.

cheers!!!
good luck

 

[dhearns90]

Dr Lerner is an infectious diseases doctor. He should know more about infectious diseases than your hometown doctor, assuming your hometown doctor is a Primary Care Physician. PCP's often have rules of thumb that apply to healthy people, but are not appropriate for PWCs. You should probably consider checking with an infectious diseases doc in you hometown before you completely dismiss Dr Lerner's recommendations.

I won't disagree with your desire not to work with Dr Lerner again; some relationships work, and some don't. Even the best docs and patients aren't always compatible. :Retro smile: Dr Lerner definitely has his own style.

Actually, the "hometown" doctor is an infectious disease specialist who I found only to carry out Dr. Lerner's plan. Maybe I should not be so quick to dismiss Dr. L's ideas, it just seemed that the other doc's interpretation of my test results were more plausible. I would love for Dr. Lerner to have been right as that means I only have 2 highly treatable infections, whereas the other doc gave no indication I had anything that could be treated. Thanks for your comments.

 

[dhearns90]

Your meeting with dr lerner looks quite successful to me, your basically negative to the herpes viruses and he picked up mycoplasma and rheumatic fever, now u have something to shoot at. These things can be treated with oral antibiotics, iv's sort of speed up the process. Maybe u could email dr lerner and ask for a good doc in your area who will treat u with abx. Doxycycline is one antibiotic used for myco and its very safe and cheap and should be easy to find a doc who would atleast prescibe u that, it is used long term as well as in 12 months sometimes longer. Did u get a natural killer function test(not just numbers) if this is low it can also be treated with immune modulators. If your in the states i would also try and look at getting an xmrv test. For him to say u dont have cfs is not correct, just u dont fit into the subset that he usually treats. If all else fails, try to educate yourself as much as u can on mycoplasma and rhuematic fever and maybe look at try to treat yourself like alot of us do to a certain degree. There are some good sources of antibiotics on the net that dont need prescriptions.
http://www.immed.org/ this guy has some good info on his site about mycoplasma, u might even find a good doc reading through his site.

cheers!!!
good luck

Hi Heapsreal,

I suppose it was a successful visit in that I tested negative for the Herpes viruses, I was glad to see that. I also tested negative for XMRV (though VIPDx). They offered to retest my blood sample for XMRV as well as MLV's. I am still waiting on those results.

The treatment options for mycoplasma and rheumatic fever you mentioned are basically what Dr. Lerner prescribed. I contacted an infectious disease specialist in my hometown who would not go through with it. He said that I do not actually have mycoplasma pneumoniae or rheumatic fever, the tests were only positive because they measure the immune response. So according to him, taking antibiotics targeting these would be like trying to fight an imaginary infection, and that my elevated immune system is what is causing my CFS. This makes sense to me since I do not have most of the symptoms associated with these infections. Also, I have remained sick for over a year now which seems to suggest something else is wrong. I have not had a natural killer function test. I think that will be my next step - to go to an immunologist and get everything tested since this appears to be an immune dysfunction. Thanks for your help.

 

[SOC]

Actually, the "hometown" doctor is an infectious disease specialist who I found only to carry out Dr. Lerner's plan. Maybe I should not be so quick to dismiss Dr. L's ideas, it just seemed that the other doc's interpretation of my test results were more plausible. I would love for Dr. Lerner to have been right as that means I only have 2 highly treatable infections, whereas the other doc gave no indication I had anything that could be treated. Thanks for your comments.

Well there goes my idea out the window, lol!

All I can really say at this point is that a couple of other docs told me I didn't have an HHV-6 infection, but Dr Lerner found that I did, has been treating with Valcyte, and I'm doing much better. Last fall I was largely bedbound from Sep - Jan. This year I'm working 12-15 hours a week. Granted that I work under very easy conditions, but it's a big improvement from 8 months ago.

My uncle tried to get me to see Dr Lerner for 2 years, but I was convinced I didn't have a viral infection and I already had a good ME/CFS doctor. I finally went when my daughter and I were too sick to travel to our regular ME/CFS doc and Dr Lerner was within barely manageable range. We haven't looked back since.

He may not be the doctor for you, I won't argue that, but he seems to be onto something that other doctors are missing. Perhaps, as you say, without a herpesvirus infection the "something" he's onto doesn't help you, but I hope you give it one more thought before you dismiss Dr Lerner's recommendations. :Retro smile:

 

[tahoma]

Hi Heapsreal,

So according to him, taking antibiotics targeting these would be like trying to fight an imaginary infection, and that my elevated immune system is what is causing my CFS.

Dhearns:

Did your infectious doc propose any sort of treatment to dampen the immune response to get you to feeling better?

T

 

[heapsreal]

if there was no infection but an immune response u should ask him if u have an autoimmune problem, see what he says. Personally i would lean on lerners side and say u have an infection and treating it will dampen your immune response. Initially starting off on antibiotics for myco u can feel worse for awhile. Some start off on doxycyline(100mg) and take it every second or third day and slowly increase it until they get to everyday, this helps reduce any die off reaction. These types of antibiotics also have anti-inflammatory effects as well, so this can also help.
I will send u a message.

cheers!!!