My Experience With Dr. Kaufman at the Open Medicine Institute

[Billt]

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.

Feel the same way...

 

[Biarritz13]

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.

Feel the same way...

What was the usual suspect then (if I may ask)?

 

[Billt]

What was the usual suspect then (if I may ask)?

Theodre, not sure of your question.. But if you mean why did he want us to take test, then in my son's case he is just not getting any better at all on everything they have thrown at him. I think it is just a case of ruling stuff out and to make sure even if there is a very low chance of being positive. Up to us if we want to spend the $$$.
In our case, we don't have extra money to spend on this. But then we feel guilty if it could help find answers for our son.
No easy answer !

 

[Kati]

I understand the 'disappointment' and feeling let down when the numbers don't quite match up how
I feel. However I appreciate the opportunity to get these tests done and to visit a clinic where this illness is recognized and validated.

Here is to good doctors. Thank you.

 

[Biarritz13]

Theodre, not sure of your question.. But if you mean why did he want us to take test, then in my son's case he is just not getting any better at all on everything they have thrown at him. I think it is just a case of ruling stuff out and to make sure even if there is a very low chance of being positive. Up to us if we want to spend the $$$.
In our case, we don't have extra money to spend on this. But then we feel guilty if it could help find answers for our son.
No easy answer !

I am sorry, I meant has he found out something positive? EBV or herpes family virus positive is common.

 

[Billt]

I am sorry, I meant has he found out something positive? EBV or herpes family virus positive is common.

Sorry I didn't get it !
He is and has been EBV positive for almost 2 years

 

[Strawberry]

I know from my experience, Dr Kaufman showed me a spreadsheet of patients, the shaded ones had SIBO, and another column was bartonella results with titre numbers. I think they are still stabbing in the dark for a possible "trigger" to this disease. He initially thought I would have bartonella, but after all my lyme results came back negative, he isn't so sure. But I will still get the test done someday soon, so that there are no stones left unturned.

I think they are putting a puzzle together and are missing many pictures on the pieces (as well as a completed picture), they are just trying to make sure they have all the pieces.

If someone can't afford the tests, I think it is okay, but then OMI just doesn't have the whole picture on that patient from the research perspective.

As for my results (stated in another thread) I am high CMV, Parvovirus, EBV, HSV2, and mycoplasma pneumonia. Low Vit D, B12, folic acid, and NK function.

 

[Billt]

I know from my experience, Dr Kaufman showed me a spreadsheet of patients, the shaded ones had SIBO, and another column was bartonella results with titre numbers. I think they are still stabbing in the dark for a possible "trigger" to this disease. He initially thought I would have bartonella, but after all my lyme results came back negative, he isn't so sure. But I will still get the test done someday soon, so that there are no stones left unturned.

I think they are putting a puzzle together and are missing many pictures on the pieces (as well as a completed picture), they are just trying to make sure they have all the pieces.

If someone can't afford the tests, I think it is okay, but then OMI just doesn't have the whole picture on that patient from the research perspective.

As for my results (stated in another thread) I am high CMV, Parvovirus, EBV, HSV2, and mycoplasma pneumonia. Low Vit D, B12, folic acid, and NK function.

Stawberry , Hope your visit went well. I know you had been waiting for awhile !!

 

[JAH]

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.

Did he send your Tbi tests to igenex, Armin, or a combo of other labs?

 

[Firefly_]

Did he send your Tbi tests to igenex, Armin, or a combo of other labs?

Igenex and Galaxy after first sending them to a "mainstream" lab I guess I'll call it that the insurance would cover. He gave me the option of not doing them as they are so expensive but I chose to do them.

As to the other questions he dx me with sibo, ebv, cmv, one of the herpes can't remember which, low nk cell count and function, umm immune deficiency, no cortisol production, erm there may be more just can't remember. That's enough anyhow, yeah?

 

[Sushi]

Dr K has advised us to take this test as well.. Very costly !!

Did he say what treatment he would use if you were positive for Bartonella? I was positive by PCR and took about a year of abx treatment. I never felt well on it, though I suppose it got rid of the Bartonella.

 

[JAH]

Igenex and Galaxy after first sending them to a "mainstream" lab I guess I'll call it that the insurance would cover. He gave me the option of not doing them as they are so expensive but I chose to do them.

As to the other questions he dx me with sibo, ebv, cmv, one of the herpes can't remember which, low nk cell count and function, umm immune deficiency, no cortisol production, erm there may be more just can't remember. That's enough anyhow, yeah?

Thanks. I'm lucky, insurance covered igenex for me. Never heard of Galaxy. I'm trying to decide whether it's worth it to pay for SIBO.

Good luck, J

 

[Biarritz13]

Sorry I didn't get it !
He is and has been EBV positive for almost 2 years

And he didn't give him antiviral?

 

[halcyon]

I think they are putting a puzzle together and are missing many pictures on the pieces (as well as a completed picture), they are just trying to make sure they have all the pieces.

From what I have heard OMI does not routinely test for enteroviruses so I think they are missing a huge possible puzzle piece.

 

[Billt]

Did he say what treatment he would use if you were positive for Bartonella? I was positive by PCR and took about a year of abx treatment. I never felt well on it, though I suppose it got rid of the Bartonella.

Sushi, He never told us what treatment would be if positive. I guess he was taking it one step at a time. We should have results soon. Although I am expecting the results to be negative, I will let you you what treatment he gives us if it turns out positive.

 

[Billt]

And he didn't give him antiviral?

Yes, they gave him high doses of Famvir ( 3000mg ) which he is still taking ( over a year now ). We have also tried other supplements they have recommended along with LDN. So, he has been on alot of things with no results.

 

[Strawberry]

From what I have heard OMI does not routinely test for enteroviruses so I think they are missing a huge possible puzzle piece.

I'm hoping these researchers all start data sharing! I think this puzzle is too big to solve alone.

@Billt I have heard that it can take a year or more to respond to antivirals. Has Dr K said anything to your sons lack of response?

 

[Billt]

I'm hoping these researchers all start data sharing! I think this puzzle is too big to solve alone.

@Billt I have heard that it can take a year or more to respond to antivirals. Has Dr K said anything to your sons lack of response?

I agree !! Sounds like every Doctor does treat differently and does different tests as well.

Dr. K really doesn't know why he is not resonding. That is why he wanted us to do the Bartonella test, just to see if something else is going on that could be causing the lack of improvement. He has also been on 3 rounds of abx for SIBO, but that is still positive as well.

 

[Strawberry]

He has also been on 3 rounds of abx for SIBO, but that is still positive as well.

Wow. That makes my brain scream WHY? Something is apparently very abx resistant. Have you looked into the biofilm busters or olive leaf, garlic and ginger and what ever else are good antibiotics and antivirals?

 

[Billt]

Wow. That makes my brain scream WHY? Something is apparently very abx resistant. Have you looked into the biofilm busters or olive leaf, garlic and ginger and what ever else are good antibiotics and antivirals?

We have not tired anything else yet. It takes so much time everytime we do a round of abx. 2 weeks on r/x then wait a month before testing. Then time to get in touch with dr and see what he wants us to do next. Rinse and repeat. So that has taken several months to get to this point. We didn't want to start anything else while he was on the r/x. And were trying to stay on what the Dr told us to do. Odd thing is he has no GI issues thankfully because he has enough on his plate.
My thought is the SIBO may still be causing his immune system to not work properly, thus not getting better