My Experience With Dr. Kaufman at the Open Medicine Institute

[Billt]

Hey guys! Sorry for the delay on my Dr. Kaufman appointment update, still recuperating from the trip.

First of all, like all of you here, my husband and I both really liked him!!

As soon as we got there the SIBO test got started. I blew a baseline of 5 ppm and within 45 minutes I was already blowing over 45 ppm- so yep, strongly positive! So the test was done after 45 minutes and Rifaximin prescribed.

(I felt aweful all afternoon with every GI symptom possible) - Lactulose is not for me lol

FYI- I have HHV6 and EBV with no co-infections 5.5 years

We discussed my history with Valcyte. I am on my second round month 12. I seem to improve a bit, then plateau. My highest functioning level so far has been around 35%of normal. Still better then the zero level of functioning pre-Valcyte!!. He wants me to increase my dose (assuming our insurance will agree)and see what happens while monitoring my blood work closely. I very lucky in that I tolerate the Valcyte like candy but my Lipase levels (pancreas) have fluctuated since the beginning but we still don't know if Valcyte is the cause of this since Lipase is not usually part of the routine lab work, I was just tested by fluke by my family doctor.

I explained my difficulty with any walking and standing with elevated heart rate. I don't have POTS but my heart rate is still above my anaerobic threshold while trying to do anything. He took my blood pressure and heart rate, standing, sitting and laying down but there was nothing serious except low BP which could be due to the fasting. He had me walk around the clinic and saw me deteriorate quickly. He thinks it could be mitochondrial related.

I showed him my list of supplements which is very basic and he asked me to increase a dose and add a couple of more like Acetyl-L-carnitine and Alpha Lipoic Acid.

I was on Celebrex many years ago for a different problem but helped me tremendously with inflammation so I will be going back on it.

I was given a cortisol saliva kit to get done.

I had some blood work done - viral titers and NK cells and other things I only saw once we were paying the $$$$ bill.I did some research on the new tests he ordered and have a theory as to why he tested it but will wait to discuss this with him during our follow up phone call. He also tested me for the MTHFR gene mutation. He also wants me to have some lab tests done back home so we don't have to pay out of pocket.

We discussed Rituxan briefly and it's something I would definitely look into if I were to win the lottery! Lol

Overall we were extremely pleased with the appointment, now the next step is getting all his recommendations to happen in Canada...

RU. thanks for the update. Sounds like most of the same test they did for my son. Keep us posted on how you are doing and get well ..... Bill

 

[jess100]

Wow, Jess! Seems you are quite sick and did the right thing by seeking expert help. Again, I'm really glad you saw Dr. Kaufman, especially since you caught this before crashing.

Keep us posted on your progress!

Ok here's an update on my progress. The rest of my labs from Igenex arrived and I'm very high for Babesia (above 160 indicates infection and my results were 640. I was negative for Lyme, Bartonella and Burgdorferi (which is good because I can't pronounce it) The HGA panel showed positive for IgG but negative for IgM.


Regarding the SIBO results I had at the time of the visit I found this article (study) regarding natural medicines
http://www.ncbi.nlm.nih.gov/pubmed/24891990 The conclusion of this study was

"Herbal therapies are at least as effective as rifaximin for resolution of SIBO by LBT. Herbals also appear to be as effective as triple antibiotic therapy for SIBO rescue therapy for rifaximin non-responders. Further, prospective studies are needed to validate these findings and explore additional alternative therapies in patients with refractory SIBO."

So I'm going to try the herbal cocktail from this study and hope it works.


In truth the only treatment I've started was the folate, and haven't yet had a second phone appointment with Dr Kaufman regarding the treatment plan now that Babesia is positive.
Thanks again Jeff for your advice to see Dr Kaufman. He is very thorough.

 

[SOC]

@jess100, how about some paragraphs, please? Many of us can't comfortably read large blocks of text.

 

[jess100]

@jess100, how about some paragraphs, please? Many of us can't comfortably read large blocks of text.

sure thing! I didn't realize that, sorry

 

[SOC]

sure thing! I didn't realize that, sorry

Thanks!

It looks like you're making some progress, which is always good news. It's still early days, but at least now you have some ideas about what's wrong and what you can do about it.

 

[RUkiddingME]

Ok here's an update on my progress. The rest of my labs from Igenex arrived and I'm very high for Babesia (above 160 indicates infection and my results were 640. I was negative for Lyme, Bartonella and Burgdorferi (which is good because I can't pronounce it) The HGA panel showed positive for IgG but negative for IgM.


Regarding the SIBO results I had at the time of the visit I found this article (study) regarding natural medicines
http://www.ncbi.nlm.nih.gov/pubmed/24891990 The conclusion of this study was

"Herbal therapies are at least as effective as rifaximin for resolution of SIBO by LBT. Herbals also appear to be as effective as triple antibiotic therapy for SIBO rescue therapy for rifaximin non-responders. Further, prospective studies are needed to validate these findings and explore additional alternative therapies in patients with refractory SIBO."

So I'm going to try the herbal cocktail from this study and hope it works.


In truth the only treatment I've started was the folate, and haven't yet had a second phone appointment with Dr Kaufman regarding the treatment plan now that Babesia is positive.
Thanks again Jeff for your advice to see Dr Kaufman. He is very thorough.

So glad you are getting answers. Thanks for that article on treating SIBO with herbs. I got back from my appointment and found out I can't get Rifaximin in Canada. In fact I have to start from scratch and go to a GI clinic in my city and get whatever treatment they recommend which won't be Rifaximin. I would love to know what's in the herbal cocktail

 

[Sushi]

found out I can't get Rifaximin in Canada.

I used to get it from Canada. Did they say what the problem was?

 

[RUkiddingME]

I used to get it from Canada. Did they say what the problem was?

It's only approved in Canada for a hepatic Encephalopathy for insurance to cover, otherwise around $1,000 for one treatment. Turns out that Canadian online pharmacy websites are not available to Canadians. The legal reliable ones anyways

 

[Sushi]

Turns out that Canadian online pharmacy websites are not available to Canadians.

What a pain! So that is the problem.

 

[nancya]

We have a phone consult with dr K soon. Does anyone know how he can help low NK function

 

[heapsreal]

It's only approved in Canada for a hepatic Encephalopathy for insurance to cover, otherwise around $1,000 for one treatment. Turns out that Canadian online pharmacy websites are not available to Canadians. The legal reliable ones anyways

Rifaximin is affordable online from clearsky pharmacy .

 

[Sushi]

That is about what I paid as a US resident buying from a Canadian pharmacy.

 

[Jill]

Hi to all of you going to the omi clinic,

I'm writing from New Zealand. I'm just wondering if any of you have any idea about the costs of all the various tests you've had done? Do you get copies or is it all just sent to your insurers? Tests here are free and I'm sure they should be able to be done, but I may just have to bite the bullet and travel to the clinic. Trying to figure out a budget. Many thanks in advance, Jill

 

[Billt]

Hi to all of you going to the omi clinic,

I'm writing from New Zealand. I'm just wondering if any of you have any idea about the costs of all the various tests you've had done? Do you get copies or is it all just sent to your insurers? Tests here are free and I'm sure they should be able to be done, but I may just have to bite the bullet and travel to the clinic. Trying to figure out a budget. Many thanks in advance, Jill

Jill, my insurance covered the bloodwork for my son. I know some that were billed to the insurance were high ( like $ 2000.00 ) . We did have to pay the Doctor visit and sibo test which was apx $ 600.00. You can go on there web portal after and see the results of all the test. They post them there when they get them back. They may be able to give you a list of tests that you could have done at home ( not sure thou ). Hope this helps.. Billt

 

[msf]

So now we have Drs. Kauffman, Lerner, and De Meirleir all finding Lyme and co-infections in their patients (I assume this is why Dr. Kauffman tests people for them). As far as I can see, there are only four possible conclusions: 1) Lyme and its co-infections are involved in a significant proportion of ME cases; 2.) there is some sort of immunological thing going on that only seems to give false positives for Lyme and co-infections, and possibly the herpes and Cocksackie viruses, but not for AIDS or Hepatitis C; 3. These doctors are all using very low specificity testing, and haven't tested any controls to see whether they would get the same results with them. 4. These doctors see a disproportionate amount of patients from Lyme-infested areas.

Anyone want a bet about which is the correct answer? I'm going with 1.)

 

[Billt]

So now we have Drs. Kauffman, Lerner, and De Meirleir all finding Lyme and co-infections in their patients (I assume this is why Dr. Kauffman tests people for them). As far as I can see, there are only four possible conclusions: 1) Lyme and its co-infections are involved in a significant proportion of ME cases; 2.) there is some sort of immunological thing going on that only seems to give false positives for Lyme and co-infections, and possibly the herpes and Cocksackie viruses, but not for AIDS or Hepatitis C; 3. These doctors are all using very low specificity testing, and haven't tested any controls to see whether they would get the same results with them. 4. These doctors see a disproportionate amount of patients from Lyme-infested areas.

Anyone want a bet about which is the correct answer? I'm going with 1.)

Dr Kaufman didn't check for Lyme on my son. Maybe because his symptoms seem to be from on going EBV that he can't get over. Don't know if he has checked others with the same issues for Lyme.

 

[msf]

He seems to have tested Jess, and I think I saw a video of him on Youtube where he said that he seems Lyme as one of the causes/triggers of ME.

 

[msf]

I would be interested to know if Dr. Lerner tested all his patients for Lyme and co-infections. I believe this is what KDM does.

 

[zzz]

So now we have Drs. Kauffman, Lerner, and De Meirleir all finding Lyme and co-infections in their patients (I assume this is why Dr. Kauffman tests people for them). As far as I can see, there are only four possible conclusions: 1) Lyme and its co-infections are involved in a significant proportion of ME cases; 2.) there is some sort of immunological thing going on that only seems to give false positives for Lyme and co-infections, and possibly the herpes and Cocksackie viruses, but not for AIDS or Hepatitis C; 3. These doctors are all using very low specificity testing, and haven't tested any controls to see whether they would get the same results with them. 4. These doctors see a disproportionate amount of patients from Lyme-infested areas.

There is also 5) Lyme and its co-infections are endemic throughout the population, but healthy immune systems keep them in check. With no symptoms of Lyme, people don't get tested - certainly not with the most sensitive tests - and this prevalence is missed. It is only found when sensitive tests are done, which is happening more and more with CFS specialists.

In this scenario, a Lyme or related infection may or may not be problematic in someone with ME/CFS, depending on the person. Treating all such infections with antibiotics may be overkill (literally). Immune modulators may be more effective here if this scenario is correct.

 

[msf]

Well, that's sort of the same as 3).