I'm on my countdown. 13 days until my appointment with Dr K. 
My Experience With Dr. Kaufman at the Open Medicine Institute
- Thread starter jeff_w
- Start date
- Messages
- 15,904
- Likes
- 47,080
I was not assessed or treated for autoimmune issues at OMI but I already had an endocrinologist who was treating me for Hashimoto's Disease before I ever went to OMI so we decided he would continue to run my thyroid and other endocrine tests. I was just recently referred to a local rheumy (have never seen one) to test for other autoimmune stuff but this was not related to OMI. In my experience, OMI is focused on viral testing and treating with anti-virals. They also diagnosed my MCAS and treated me until I found a local MCAS specialist. I also found a semi-local mold specialist as this was not something that OMI treats. They are wonderful, kind-hearted people but the focus is on treating with anti-virals IMO.
At least in the case of Dr. Kaufman, who was previously a longtime HIV/AIDS doctor and researcher, he probably tends to gravitate towards the viral side of things.
When I saw him last year he said he would much rather have HIV/AIDS than ME/CFS, if he had to choose one or the other. That let me know he appreciates the severity of the illness.
My only disappointment or surprise, I guess you'd say, is that - at the time - he was completely unaware of the significant subset of us who have the abnormal vitamin D tolerance and issue with respect to high levels of calcitriol (1,25-dihydroxyvitamin D3) in the face of low levels of precursor (i.e., 25-hydroxyvitamin D3). Dr. Kenny de Meirleir, for example, is very aware of this peculiarity, as were all the CFS specialists I'd seen prior to Dr. Kaufman. I assumed that this was just because Dr. Kaufman was relatively new to treating ME/CFS. Interestingly, he does have a particular interest in researching the therapeutic use of vitamin D (which makes my ME/CFS subset worse).
When I saw him last year he said he would much rather have HIV/AIDS than ME/CFS, if he had to choose one or the other. That let me know he appreciates the severity of the illness.
My only disappointment or surprise, I guess you'd say, is that - at the time - he was completely unaware of the significant subset of us who have the abnormal vitamin D tolerance and issue with respect to high levels of calcitriol (1,25-dihydroxyvitamin D3) in the face of low levels of precursor (i.e., 25-hydroxyvitamin D3). Dr. Kenny de Meirleir, for example, is very aware of this peculiarity, as were all the CFS specialists I'd seen prior to Dr. Kaufman. I assumed that this was just because Dr. Kaufman was relatively new to treating ME/CFS. Interestingly, he does have a particular interest in researching the therapeutic use of vitamin D (which makes my ME/CFS subset worse).
- Messages
- 15,904
- Likes
- 47,080
@nandixon He definitely understands and empathizes with the severity of the illness and is very compassionate and hard-working. I do not have the calcitriol issue and tested it with my Endo and I do well with a high dose of Vit D, otherwise my Vit D level drops to non-existent.
I did horribly with the methylation supplements that he prescribed and they were super high doses. I tried at a fraction of the dose he recommended and they made me incredibly ill with an over-methylation reaction but I know this is certainly not the case for everyone and many tolerate them well. Famvir and Valcyte did not help me at all. I took Famvir for eight months with no improvement and I did not tolerate Valcyte at any dose (not even 1/64th of a pill!)
My issues are so different that I am no longer sure of my diagnosis (although I consistently have positive IgM titers for EBV, VZV, HSV 1&2, etc) plus two positive enterovirus tests that I requested to test but OMI does not treat enteroviruses. I am going to be consulting with Dr. Chia in a few mos to get his take on the enteroviruses but most likely will not tolerate the treatment for those either given my history.
Am currently working with an MCAS and a mold specialist and investigating other treatment options since I have exhausted the anti-viral route. I know none of this may apply to anyone else but wanted to answer the question as fully as I can.
I did horribly with the methylation supplements that he prescribed and they were super high doses. I tried at a fraction of the dose he recommended and they made me incredibly ill with an over-methylation reaction but I know this is certainly not the case for everyone and many tolerate them well. Famvir and Valcyte did not help me at all. I took Famvir for eight months with no improvement and I did not tolerate Valcyte at any dose (not even 1/64th of a pill!)
My issues are so different that I am no longer sure of my diagnosis (although I consistently have positive IgM titers for EBV, VZV, HSV 1&2, etc) plus two positive enterovirus tests that I requested to test but OMI does not treat enteroviruses. I am going to be consulting with Dr. Chia in a few mos to get his take on the enteroviruses but most likely will not tolerate the treatment for those either given my history.
Am currently working with an MCAS and a mold specialist and investigating other treatment options since I have exhausted the anti-viral route. I know none of this may apply to anyone else but wanted to answer the question as fully as I can.
What surprises me about the OMI approach, especially from a physician who used to be a HIV doctor, is the focus on herpes titres in ME/CFS. As Dr Chia pointed out at the conference in London earlier this year, before the discovery of HIV lots of people were focusing on herpes virus titres in AIDS patients and speculating about the possible causative role of these viruses but all this became instantly irrelevant once the real cause of AIDS was discovered. Speaking as someone with ME/CFS and pretty much chronic shingles, it seems pretty clear to me that these reactivations are a consequence of whatever the hell is going on with the redox state and the immune system in ME/CFS, not the cause. Valcyte, when it works in a subset of patients, probably works through its immunomodulatory mechanisms rather than its antiviral effect. To my mind, the herpes virus approach is a dead end.
I think you need to look at it from a different perspective. These doctors are using AVs because viral infections exist, not because they necessarily believe those infections are causative.
It's pretty silly to refuse to treat a secondary condition because it's not the cause of the illness, especially if the secondary condition may be at the root of some of the worst symptoms. HIV patients don't die directly from low CD4+ cell numbers, they die from the secondary infections their bodies can't handle because of immune deficiency. Should those secondary infections not be treated because they're not the cause of AIDS?
Former HIV/AIDS doctors who now treat ME (Kaufman, Klimas and possibly Kogelnik and Rey) know from experience with HIV that some of the worst symptoms in an immune deficient patient come from the secondary infections. That's why all of them use AVs when they detect viral infections, just as they did with AIDS patients back in the pre-ARV days.
Before ARVs were available, AIDS doctors were using antivirals extensively to try to reduce symptoms and slow progression of the illness. That's where we are with ME right now. We don't know the cause, but we do know that many patients have serious secondary infections that need to be treated.
FYI, neither Dr Klimas nor Dr Rey ever suggested to me that herpesviruses were the cause of ME. In fact, they've been very clear they don't know the cause -- nobody does. I don't believe Drs Kaufman, Kogelnik, Klimas, or Rey ever believed herpesviruses are the root cause of ME. Anyone who claims they do should check their facts.
These doctors are using AVs because viral infections exist, not because they necessarily believe those infections are causative.It's pretty silly to refuse to treat a secondary condition because it's not the cause of the illness, especially if the secondary condition may be at the root of some of the worst symptoms. HIV patients don't die directly from low CD4+ cell numbers, they die from the secondary infections their bodies can't handle because of immune deficiency. Should those secondary infections not be treated because they're not the cause of AIDS?
Former HIV/AIDS doctors who now treat ME (Kaufman, Klimas and possibly Kogelnik and Rey) know from experience with HIV that some of the worst symptoms in an immune deficient patient come from the secondary infections. That's why all of them use AVs when they detect viral infections, just as they did with AIDS patients back in the pre-ARV days.
Before ARVs were available, AIDS doctors were using antivirals extensively to try to reduce symptoms and slow progression of the illness. That's where we are with ME right now. We don't know the cause, but we do know that many patients have serious secondary infections that need to be treated.
FYI, neither Dr Klimas nor Dr Rey ever suggested to me that herpesviruses were the cause of ME. In fact, they've been very clear they don't know the cause -- nobody does. I don't believe Drs Kaufman, Kogelnik, Klimas, or Rey ever believed herpesviruses are the root cause of ME. Anyone who claims they do should check their facts.
Don't we often talk here about what our doctors tell us about ME? What is so private about what one doctor says about the cause of the illness? That seems like something the doctor wouldn't feel is secret unless he's about to publish something related to causality, and what a doctor thinks is the cause of the illness something patients should probably know. Let's just say I don't accept I'm incorrect based only on your say-so when you won't even say who told you exactly what.
Still, you are entitled to withhold any information you choose. Just make sure you are distinguishing between the doctor saying certain symptoms are caused by herpesviruses and that ME itself is caused by herpesviruses.
If either OMI doctor believes ME is caused by a herpesvirus, has he explained why treating the virus does not result in a full remission of all treated patients? Or why billions of people get herpesviruses but only a miniscule fraction of them develop ME? A lot of questions need to be answered before herpesvirus causality can be reasonably considered. The OMI docs are sharp fellows, so they have to have thought all that through before deciding ME is caused by herpesviruses.
I'd be interested to hear from other OMI patients whether they've been told that herpesviruses are the root cause of ME.
Still, you are entitled to withhold any information you choose. Just make sure you are distinguishing between the doctor saying certain symptoms are caused by herpesviruses and that ME itself is caused by herpesviruses.
If either OMI doctor believes ME is caused by a herpesvirus, has he explained why treating the virus does not result in a full remission of all treated patients? Or why billions of people get herpesviruses but only a miniscule fraction of them develop ME? A lot of questions need to be answered before herpesvirus causality can be reasonably considered. The OMI docs are sharp fellows, so they have to have thought all that through before deciding ME is caused by herpesviruses.
I'd be interested to hear from other OMI patients whether they've been told that herpesviruses are the root cause of ME.
Our experts see dozens of patients every day. Each patient is different and understand things differently. Sometimes what the doctor says is within a certain context which can be taken out of context or misunderstood by the person who is sharing the information.
One needs to give a little respect for the doctors who are working their ass off for all of us, and one needs to be careful about the information that is shared.
We live in a world where is it not safe to say we have this disease called myalgic encephalomyelitis aka chronic fatigue syndrome. Where physician teams scramble for access to NIH funding. Where their reputation is at stake. We owe our physicians experts respect.
Personally, the physicians I respect, I am asking them if I can share this part of information they shared with me privately. They will tell you yes or no.
Be careful out there, with what you say. Not that I want to gag people from saying things, but more that you may take their sharings out of context.
Dr Kogelnik and Kaufman do some very important work out there. They are brilliant. They work extremely hard. Their work is innovative. Some will like it, while others (including skeptics) won't.
We have to be careful not to undo what they are trying to do.
My 2 cents.
One needs to give a little respect for the doctors who are working their ass off for all of us, and one needs to be careful about the information that is shared.
We live in a world where is it not safe to say we have this disease called myalgic encephalomyelitis aka chronic fatigue syndrome. Where physician teams scramble for access to NIH funding. Where their reputation is at stake. We owe our physicians experts respect.
Personally, the physicians I respect, I am asking them if I can share this part of information they shared with me privately. They will tell you yes or no.
Be careful out there, with what you say. Not that I want to gag people from saying things, but more that you may take their sharings out of context.
Dr Kogelnik and Kaufman do some very important work out there. They are brilliant. They work extremely hard. Their work is innovative. Some will like it, while others (including skeptics) won't.
We have to be careful not to undo what they are trying to do.
My 2 cents.
Last edited:
You make a lot of excellent points.
I've been giving a lot of thought over the past few months about the wisdom of sharing what my ME specialist tells me and the details of my testing and treatment. This is largely because of criticism leveled against those doctors, their treatment plans, and their ideas by PR members who are not their patients and in some cases not ME patients at all.
This conversation has solidified my thinking on the subject. I am going to do my best to remember to keep my mouth shut about what I learn from my specialist and my treatment. I owe too much to those doctors to put them at risk.
Now I just have to hope my lousy ME memory hangs onto this resolution.
I've been giving a lot of thought over the past few months about the wisdom of sharing what my ME specialist tells me and the details of my testing and treatment. This is largely because of criticism leveled against those doctors, their treatment plans, and their ideas by PR members who are not their patients and in some cases not ME patients at all.
This conversation has solidified my thinking on the subject. I am going to do my best to remember to keep my mouth shut about what I learn from my specialist and my treatment. I owe too much to those doctors to put them at risk.
Now I just have to hope my lousy ME memory hangs onto this resolution.
- Messages
- 1,130
- Likes
- 4,099
@Gingergrrl
What you are saying makes perfect sense. Even though you have past or present viruses in your system the key to getting better may not invoke taking antivirals. You may need a different treatment to improve your health.
There are other subsets to ME. Most of the research I've read about is focused on locating viruses, antivirals, natural killer cells, and killing B cells. I am happy that PWME benefit from Ampligen and Rituxan. I hope we get the research going in other subsets too.
What you are saying makes perfect sense. Even though you have past or present viruses in your system the key to getting better may not invoke taking antivirals. You may need a different treatment to improve your health.
There are other subsets to ME. Most of the research I've read about is focused on locating viruses, antivirals, natural killer cells, and killing B cells. I am happy that PWME benefit from Ampligen and Rituxan. I hope we get the research going in other subsets too.
- Messages
- 15,904
- Likes
- 47,080
Thanks @Groggy Doggy but I am afraid of making this thread about my case which is unique in that I am not even sure anymore if I have ME/CFS although I do have IgM positives on many tests including EBV & herpes viruses as well as enteroviruses. I wanted to reply to the person who asked about autoimmune issues as this is now something I am going to pursue (but not at OMI.) Dr. Kaufman is wonderful as I said and if you find my original post from 1-2 yrs ago, I described him as an angel sent to help us. But in my own case of (N=1) anti-virals did not help me and my condition deteriorated. It was completely logical to try anti-virals for the high viral titers and I took them with full consent and do not regret trying them. They work for many people, they just did not work for me. I also had no idea of the level of mold exposure I was living with the entire time and no one could have known until we discovered it. Am happy to say more via PM or another thread but want to try to keep this one on topic even though it's shifted topics many times!
It could be to do with the issue I think I discussed with you in another recent thread: reversing an initial cause will not necessarily cure the illness because other things will have happened down the line or across the web of illness causation.
I can't remember what analogy I used in that one, but here is another: gangrene, frostbite or leprosy can cause the loss of limbs, but treating an infection or warming someone up will not make the limbs grow back.
I can't remember what analogy I used in that one, but here is another: gangrene, frostbite or leprosy can cause the loss of limbs, but treating an infection or warming someone up will not make the limbs grow back.
Gingergrrl, I'm so grateful for your reply! I see myself in your case description. I have tried Valcyte (generic version) and couldn't tolerate even a tiny dose because of BP lowering. In fact, my opinion about antiviral treatment is unstable, varying from "You should start Valcyte ASAP" to "Don't take anything at all".
As for dr. K, he supposed I might have a chromosomally integrated type of the virus, that means I will always have elevated titres in the blood serum, which doesn't necessarily mean this virus should be treated. But this supposition should be ruled out first. Don't know for sure what specialist to go to... KDM is a second choice, but I'm afraid he will concentrate on looking for Lyme and I don't think this is what I'm suffering from. I don't have a lot of money to pay for numerous lyme tests for no reason.
Could you be so kind as to PM me about your current MCAS treatment.
Thank you in advance
As for dr. K, he supposed I might have a chromosomally integrated type of the virus, that means I will always have elevated titres in the blood serum, which doesn't necessarily mean this virus should be treated. But this supposition should be ruled out first. Don't know for sure what specialist to go to... KDM is a second choice, but I'm afraid he will concentrate on looking for Lyme and I don't think this is what I'm suffering from. I don't have a lot of money to pay for numerous lyme tests for no reason.
Could you be so kind as to PM me about your current MCAS treatment.
Thank you in advance
- Messages
- 15,904
- Likes
- 47,080
I got a little overwhelmed by PM's the last few weeks and need to take a break today and apologize to anyone who sent me a question or requested info. I don't really know much more than I said in this thread and I definitely do not have details of any kind re: OMI's research projects except that I 100% support the End Me/CFS Project which is exploring all possible pathogens as the cause (and I assume beyond pathogens but do not know the specifics.) Am sorry I cannot be more helpful right now!
- Messages
- 15,904
- Likes
- 47,080
@Immunity I realized that I never replied to this and my current MCAS meds/supps are: Zyrtec, Ketotefin, Quercetin, Daosin & Neuro Protek with Atarax as my rescue med. Hope this helps and feel free to PM me if you have further questions but it may take me several days to a week to respond.
- Messages
- 15,904
- Likes
- 47,080
@Immunity Did he say how that is determined or tested? I seem to have permanently raised titers to EBV and VZV but never heard of the chromosomally integrated type of virus. It sounds like in that case, anti-virals would be of no use?
Dr K has advised us to take this test as well.. Very costly !!
Yeah he had me take a few different tbi tests too, cost around $2300.00! Almost a disappointment when they turned up negative lol, like flushing money down the toilet. I know, I know negative is good but sheesh.