My Experience With Dr. Kaufman at the Open Medicine Institute

[Billt]

I am saving $ now to go here. Gingergrrl or Jeff, do you rememberhow long you need to be there for your first appt ?
I will be bringing my son there and need to stay as short a time as possible. Was it just one day or did you need to do several test over the course of several days. Gingergrrl, I may find out the name of that cheap hotel since we will be coming from New Orleans. Do they need to look over your blood work before the agree to see you ?
Thank you guys for your stories and sharing the hope... Billt

 

[jeff_w]

2 questions:

@jeff_w you said you started LDN before seeing Dr. Kaufman. Do you happen to know what's his thoughts about it? Does he prescribe it?

and, anyone knows if Dr. Kaufman also does Rituximab if he thinks it's the case?

@Folk

Dr. Kaufman now prescribes my LDN, since I no longer see the GP who first prescribed it. He also does Rituximab.

 

[jeff_w]

I am saving $ now to go here. Gingergrrl or Jeff, do you rememberhow long you need to be there for your first appt ?
I will be bringing my son there and need to stay as short a time as possible. Was it just one day or did you need to do several test over the course of several days.

Do they need to look over your blood work before the agree to see you ?
Thank you guys for your stories and sharing the hope... Billt

Hi @Billt ,

The first appointment was about 2 hours, if my memory is correct. There was just one day of testing. They don't need to look over your blood work before they see you, but you do need to provide a written health history timeline, prior to your appointment, for Dr. Kaufman to review.

When you contact their office, they'll mail or email you a welcome packet with instructions on everything you need to do prior to the appointment.

Good luck! Keep us posted.

 

[Folk]

@jeff_w @Gingergrrl Did they test you guys for lyme? How?

And any tests for the gut?

 

[jeff_w]

@jeff_w @Gingergrrl Did they test you guys for lyme? How?

And any tests for the gut?

Yes. He did an SIBO test on me. He also tested for lyme.

 

[Folk]

Damn, I'll do wathever he tells me to do, but I won't ever do a SIBO test again. :|

I wish they went for something like disbiosis, but perhaps GI issues wasn't a problem for you right?

 

[jeff_w]

Damn, I'll do wathever he tells me to do, but I won't ever do a SIBO test again. :|

I wish they went for something like disbiosis, but perhaps GI issues wasn't a problem for you right?

I had SIBO. A course of the antibiotic Xifaxan got rid of it.

 

[Gingergrrl]

@jeff_w @Gingergrrl Did they test you guys for lyme? How?

And any tests for the gut?

@Folk Sorry I missed this question. I had seen an integrative GI doctor and a naturopath a few months before seeing Dr. Kaufman and had already had a SIBO test which was negative so we did not repeat it. He did re-test me for Lyme (even though I had been tested previously) and in my case all Lyme tests were negative. Hope this helps.

 

[Billt]

Thanks for the info Jeff. Hopefully we can get there, see Dr and get home within a 2 day span so I can get back to work.
And thank you for sharing your story. Without that others like me would be lost as to where to go. Be well my friend. ..
Billt

 

[jess100]

Hi Jess, I wanted to try to reply in a little more detail than I was able to last night.
You asked if I felt the trip up to OMI was worth it and if I had gotten my life back and I will tell you that it was absolutely worth it and that I am still in the process of trying to get my life back b/c this is still an illness with no cure or quick fix.

I've tried several different treatments and am currently taking Valcyte and have had more improvements in the last 2.5 weeks than on any other treatment. I have a separate thread on Valcyte if you want to read about it. The reason I recommend Dr. Kaufman and OMI so highly is that they will never give up on you no matter how complex your case is.

You will be treated with complete respect and dignity and you will gain back a sense of hope that you have a doctor and center who believes in you and believes in what they are doing.

They have a cutting edge team of scientists at OMF working to solve this illness and in addition to the great clinical care they provide, they are really focused on the bigger picture of discovering the biomarker or mechanism behind the illness (although sadly they do not yet have the funding to do all the wonderful research that they envision.)

And assuming you have a U.S. insurance, then your blood tests should be covered. In my case we were able to drive there in 6-7 hours so did not have to pay for air fare and we got a cheap hotel. The most expensive part will be paying for Valcyte in the future but I am prepared to do this and if it continues to help me as much as it has so far, it is well worth it.

Hope this helps and best wishes if you decide to go!

Thanks for your response -I've been waiting to hear your experience. I did call them assuming there would be about a 6 month wait but to my surprise they are able to see me in a month. Since I already have plans to be in Mexico until June I scheduled it for June. Maybe that was a mistake-and I'll be bed-ridden by June. I'm going to think about this and maybe I can see them before I go to Mexico.
I don't even know what Valcyte is and will need to research it.
I read Jeff's experience and it sounds like at OMI they are very serious about making some medical headway into this sickness. I was impressed with the team they had assembled.
I had an interesting conversation with my doctor's NP a few days ago and I'll post that separately.
Thanks again for your response

 

[jess100]

Hi Jess, I wanted to try to reply in a little more detail than I was able to last night.
You asked if I felt the trip up to OMI was worth it and if I had gotten my life back and I will tell you that it was absolutely worth it and that I am still in the process of trying to get my life back b/c this is still an illness with no cure or quick fix.

I've tried several different treatments and am currently taking Valcyte and have had more improvements in the last 2.5 weeks than on any other treatment. I have a separate thread on Valcyte if you want to read about it. The reason I recommend Dr. Kaufman and OMI so highly is that they will never give up on you no matter how complex your case is.

You will be treated with complete respect and dignity and you will gain back a sense of hope that you have a doctor and center who believes in you and believes in what they are doing.

They have a cutting edge team of scientists at OMF working to solve this illness and in addition to the great clinical care they provide, they are really focused on the bigger picture of discovering the biomarker or mechanism behind the illness (although sadly they do not yet have the funding to do all the wonderful research that they envision.)

And assuming you have a U.S. insurance, then your blood tests should be covered. In my case we were able to drive there in 6-7 hours so did not have to pay for air fare and we got a cheap hotel. The most expensive part will be paying for Valcyte in the future but I am prepared to do this and if it continues to help me as much as it has so far, it is well worth it.

Hope this helps and best wishes if you decide to go!

Also I'm very happy for you that the Valcyte is working well and you're feeling much better. I will read your post on it. I'm in NY but a flight out to Ca seems prudent.
Jess

 

[jess100]

@jess100 -

I agree 100% with everything @Gingergrrl said.

I'll add something I've said to you before, because it's worth repeating: Now is the best time for you to go to a CFS/ME specialist. You haven't had a massive disabling crash yet, and you're not bedridden. I wish I could turn back the clock so that I could see Dr. Kaufman when I was still at your stage of illness.

Good luck!

HI Jeff

Thanks for saying it again, because sometimes I want to be in denial that things can get worse for me. I made an appointment with OMI in June and because of what you said here I'm going to call them back on Monday and see when is the first available appointment and rearrange my plans for Mexico.
I also called another doctor in NY but not sure I will follow up-many people had bad experiences with him.

Jess

 

[Gingergrrl]

Also I'm very happy for you that the Valcyte is working well and you're feeling much better. I will read your post on it. I'm in NY but a flight out to Ca seems prudent.
Jess

Thanks, @jess100 and best wishes whatever you decide. I also wanted to clarify that they have many treatment options and Valcyte is only one of them. It would depend on your individual symptoms and test results and your treatment may be totally different than mine or Jeff's (or may be similar.)

 

[jess100]

One question to everyone who's been to Kaufman or other good doctors mentioned here. Was you blood work showing active, elevated antibodies?
I don't think mine shows anything, except when the mono was showing up-which has been disputed by my current doctor. He said the test isn't good. I'm not sure what to believe.
If I don't have any clinical signs of virus or other infections, would OMI still be able to help?
What is SIBO ?

Jess

I had SIBO. A course of the antibiotic

Thanks, @jess100 and best wishes whatever you decide. I also wanted to clarify that they have many treatment options and Valcyte is only one of them. It would depend on your individual symptoms and test results and your treatment may be totally different than mine or Jeff's (or may be similar.)

 

[jeff_w]

One question to everyone who's been to Kaufman or other good doctors mentioned here. Was you blood work showing active, elevated antibodies?
I don't think mine shows anything, except when the mono was showing up-which has been disputed by my current doctor. He said the test isn't good. I'm not sure what to believe.
If I don't have any clinical signs of virus or other infections, would OMI still be able to help?
What is SIBO ?

Hello @jess100

My blood work was showing active infections, because my doctor knew what to test for. The doctor needs to test for specific antibodies when evaluating this illness. It may be that your doctor has been testing the wrong ones, as the vast majority of doctors have not been trained in this, just as so many doctors do not even believe that CFS/ME is a real disease.

The OMI will be able to help you if you have CFS/ME. They will also give you valuable information if you don't. In your case, something is clearly very wrong, and your symptoms strongly suggest CFS/ME. On the off-chance that you don't have it, the OMI will be able to rule it out as well as find out what you do have. Then they will suggest treatment options from there. In other words, you have nothing to lose and so much life to gain by going there.

 

[SOC]

One question to everyone who's been to Kaufman or other good doctors mentioned here. Was you blood work showing active, elevated antibodies?
I don't think mine shows anything, except when the mono was showing up-which has been disputed by my current doctor. He said the test isn't good. I'm not sure what to believe.
If I don't have any clinical signs of virus or other infections, would OMI still be able to help?

My GPs swore up and down that my viral titres indicated nothing wrong. I believed him (and her, and another her) for years as I continued to get worse and worse. I was bedbound by the time I went to see a top specialist who immediately put me on antivirals and I started getting better. So I'm going with the specialists' notion that the titres plus my symptoms indicated a problem that needed to be dealt with.

I think none of the science around antibodies titres is sufficiently clear where ME/CFS is concerned. I'm not even 100% confident that the reason the AVs work for me and my family is that they're treating infections (although that seems likely). It could be their immune-modulating properties that are having an effect. Doesn't really matter, though, if the AVs are significantly improving our condition.

 

[jeff_w]

Thanks for saying it again, because sometimes I want to be in denial that things can get worse for me.

Oh, you bet.

I made an appointment with OMI in June and because of what you said here I'm going to call them back on Monday and see when is the first available appointment and rearrange my plans for Mexico.

That is the best idea I've heard today. Granted, I haven't left my house... but yeah.

That's the best thing you can do.

Keep us posted!

 

[Gingergrrl]

One question to everyone who's been to Kaufman or other good doctors mentioned here. Was you blood work showing active, elevated antibodies?

@jess100 You already got some answers but wanted to respond that in my case, I have positive antibodies for active infection of EBV and VZV (and more recently for Echovirus but this is being re-checked.) I took Famvir for 7-8 months (actually am still taking it) but did not start to have improvement until I started on a low dose of Valcyte.

I now believe, like SOC and others have said, that it is less the anti-viral properties vs. the immune modulator and anti-inflammatory and other effects of Valcyte that are helping me especially as I am taking a very low dose.

But to answer your question, OMI will test you for everything in addition to getting a very detailed history of your symptoms and base your treatment on that.

 

[Folk]

Any special cause for not taking LDN @Gingergrrl ?

 

[Gingergrrl]

Any special cause for not taking LDN @Gingergrrl ?

@Folk I tried LDN from my former naturopath (before I ever went to OMI) and had a bad reaction. It is possible I could be okay with a lower dose and many people have recommended it highly but for now, I am sticking with my current protocol and not adding anything new into the mix.