Dr. Kaufman - what tests does he do, & is he knowledgable about MTHFR etc.

[Mary]

@jeff_w, @Gingergrrl - and anyone else who has seen Dr. Kaufman - can you tell me briefly what tests he does? e.g., I know he tests for viruses, but would appreciate any other info about testing he orders. I also know he tests for SIBO if warranted.

Also, is he knowledgable about methylation and MTHFR issues?

Thanks!

 

[helen1]

He tested me for NK cell function, Lymph subset, c.pneumonia, mycoplasma, cmv, hhv, ebv, metabolic profile, histamine, vzv, ammonia.

He asked me about my mthfr snps, but not about other methylation snps, though he did ask me to send him my snps.

 

[Gingergrrl]

Pretty much what Helen mentioned- viral testing (EBV, HHV-6, CMV, VZV, etc) Lyme & co testing, C. Pneumonia, mycoplasma etc. NK cell functioning, lymphocyte testing and whatever specific to your case. SIBO test, histamine & tryptase etc. I was initially tested for MTHFR genes (SNP's ?) but I did not tolerate the methylation supplements at all. Hope that helps.

 

[Mary]

He tested me for NK cell function, Lymph subset, c.pneumonia, mycoplasma, cmv, hhv, ebv, metabolic profile, histamine, vzv, ammonia.

He asked me about my mthfr snps, but not about other methylation snps, though he did ask me to send him my snps.

Thank you - this helps!

 

[Mary]

Pretty much what Helen mentioned- viral testing (EBV, HHV-6, CMV, VZV, etc) Lyme & co testing, C. Pneumonia, mycoplasma etc. NK cell functioning, lymphocyte testing and whatever specific to your case. SIBO test, histamine & tryptase etc. I was initially tested for MTHFR genes (SNP's ?) but I did not tolerate the methylation supplements at all. Hope that helps.

Thank you - this does help. I've had some of that testing before, but not all of it, so this is helping me decide about making the trek to northern California - I'll probably have to bite the bullet ...

 

[jess100]

Mary
He tested me for all the things the others have mentioned (Lyme, Babesia, Bartonella, B.burgdorferi) as well as thyroid, A1C (for diabetes), iron, vit D (and the usual blood tests) mono, herpes, HME, and maybe a few others. He was very thorough.

 

[Mary]

Mary
He tested me for all the things the others have mentioned (Lyme, Babesia, Bartonella, B.burgdorferi) as well as thyroid, A1C (for diabetes), iron, vit D (and the usual blood tests) mono, herpes, HME, and maybe a few others. He was very thorough.

Thank you Jess! The more I read, the more I think I should go see him -- I haven't had testing this thorough done before --

 

[funkyqueen]

Dr Kaufman tested on me:
- Sibo ( positivity is very commun on MEers)
- NK function & immunologie
- MTHFR mutations ( positive for one of the two commun MTHFR mutations seen in more than 90% of MEers, and only seens in less than 25% of " controls" )
- a large panel of some virus/enterovirus, bacterias (even if a loooooooot was done in my country,he re-test me for some )
- basics ( cbc, cbp)
- probably others things i can not remember just right now

and i gave some of my blood for OMI/OMF's ME Research...i guess they look genetics too.
I'm really appreciative for their work and devotion in ME Research ...
I'm really convinced that it will come out positive for us one day !

http://www.openmedicinefoundation.org/the-end-mecfs-project/

 

[Valentijn]

- MTHFR mutations ( positive for one of the two commun MTHFR mutations seen in more than 90% of MEers, and only seens in less than 25% of " controls" )

Which mutations? C677T and A1298C are equally common in both patients and non-patients, according to the data I've seen. Has something been published?

 

[MYSTIC]

I received my last Rituxan infusion in OMI yesterday !
D.Kaufman tested on me :
SIBO (strongly positive)
NK cell Lymph activity
MTHFR mutations: only A1298C positive
virus panel :herpes, HIV,EBV,CMV,HHV6,HSV 1+2.....
CD56+CD16
CD3+CD4
CD19 before Rituxan
CK, glucose
IL1 , IL2
IGg, IGa,IGm subclass
vit D D25 ,mononucleosis,
ACTH level (undetectable)
blood sample (18 tubes!!)
genetic counseling and DNA testing for at risk family members

cost 3500 $ only for blood test and SIBO

It seems , complete remission with Rituxan therapy is rare, many patients are in partial remissions and fall ill again a few months after stop.
I'm only in partial remission too, sad

 

[Kyla]

Which mutations? C677T and A1298C are equally common in both patients and non-patients, according to the data I've seen. Has something been published?

Since this is at OMI I wonder if it might be one of these (as yet unpublished) studies:

http://www.openmedicinefoundation.org/completed-studies/

Sunshine Project Genomics Core Study
Status: Completed in spring 2015 / results to be published soon
Researchers: Andreas Kogelnik, MD, PhD, at the Open Medicine Institute (OMI)
Funding: Equipment funded by OMF donations
Study Goal: Identify gene expression/activity in ME/CFS patients in relation to symptoms, symptom severity, before and after treatments and disease stage
Study Info: Through an OMF donor, state-of-the-art equipment for the measurement of gene expression (70,000 genes at a particular time point) was acquired and put into operation at OMI. This part of the OMI Omics Core is aimed at shedding new light on what goes up and down as patients progress through their disease (and treatment) courses. Ongoing projects in the Core include baseline, severity surveys, treatment progression, and exercise and other stress testing as part of the OMI ME/CFS Biobank survey. Several papers are expected to be published from this work, including an in-depth analysis on a small cohort of patients.
Action Needed: None at this time

ME/CFS Whole Genome Profiles
Status: Completed in the fall of 2014 / results to be published soon
Researchers: Andreas Kogelnik, MD, PhD, at the Open Medicine Institute and the Stanford Genomic Technology Center
Funding: Wholly funded by OMF donations through the Edward P. Evans Foundation
Study Goal: Perform the first whole genome DNA analyses ever done in ME/CFS
Study Info: This study looked at the genetic profile of 6 ME/CFS patients and several family members. This effort has produced “a tidal wave of data” that, like most whole genome data, will be analyzed for some time to come. The initial result did not yield any single genes responsible for ME/CFS, however, it did identify numerous candidate groupings for increased susceptibility to ME/CFS.
Action Needed: None at this time

ME/CFS Epigenetics DNA Methylation Pilot
Status: Completed in the fall of 2014 / working to replicate in a larger study
Researchers: Andreas Kogelnik, MD, PhD, at the Open Medicine Institute
Funding: Wholly funded by OMF donations through the Edward P. Evans Foundation
Study Goal: Perform an initial analysis of external factors influencing DNA activity in ME/CFS patients
Study Info: This study looked at how genes in ME/CFS patients are marked for activity, that is turned on or turned off, when exposed to certain stimuli. In the fall of 2014, we completed an analysis of methylation patterns associated with hundreds of patients.
Action Needed: None at this time

 

[Gingergrrl]

It seems , complete remission with Rituxan therapy is rare, many patients are in partial remissions and fall ill again a few months after stop.
I'm only in partial remission too, sad

@MYSTIC I think I may have asked you this in another thread but now I can't find it and apologize if I am now asking you twice! Can you explain how you were determined to be a good candidate for Rituxan and what symptoms you had that are now in partial remission? Thank you for any info.

 

[MYSTIC]

@MYSTIC I think I may have asked you this in another thread but now I can't find it and apologize if I am now asking you twice! Can you explain how you were determined to be a good candidate for Rituxan and what symptoms you had that are now in partial remission? Thank you for any info.

@Gingergrrl
hi, I think that you confuse with another person.

I will like to give you the symptoms which disappeared but I joined the idea of a member who also treated at the OMI with RITUXAN by D.Kaufman and I think that it would be very dangerous for the quality of these studies in progress in Stanford and Bergen to declare this chronology on the social networks because the psychological aspect of our disease being very strong.

It would be a shame of ruined these studies and to waste the chance that this treatment can lead for those which did not have the chance and the means of offering it (total costs 30,000 $ !!).

The psychiatrists would have a joy of finding a fault in the study to decline its veracity !

I will make you the diary as soon as Fluge / Mella and OMI will have published .

I can say only that my improvement is approximately 50%.

 

[Gingergrrl]

@MYSTIC I am not confusing you with someone else b/c you posted in another thread about getting Rituxan, I just can't find it!

OMI is not giving Rituxan out right now as a study and you telling your symptoms would have nothing to do with the results of the Norway trial.

But fair enough if you prefer not to discuss and no worries.

 

[MYSTIC]

Hi,
I do not know all about the criteria of eligibility for the RITUXAN, just that 80% of these patients have a low level ACTH or undetectable and especially a very low level of the NK lymph cells.

There are other deteriorations which are I think the fruit of their work since two years.
All patients are not eligible in Rituxan,

only form them obviously immune are it.

I am sorry to not be able to say more,

just than symptoms disappear gradually :brain fog, blurd vision,facility to sleep ,headhache,refresh sleep,joint pain, dry syndrom,...... very very slowly.

In my case, as of fifth infusion,i noticed that my immune system had been reactivated after only two months
and half of the
previous infusion (reactivation of symptoms).

During this last infusion, I felt as at the beginning the same feeling which did not exist any the preceding ones .

i think for me the deadline between two perfusions was too long and the immune system had been reactivated before .

 

[Gingergrrl]

Thank you and was just curious if it matched what I had been told re: having active EBV and certain viruses, low NK cell functioning, autoimmunity, etc.

I am not sure what ACTH would have to do with it and your symptoms are totally different than mine.

You answered my question and I appreciate it but I have no more clarity on who is a candidate and who is not but I guess this is just my own curiosity and the answers will unfold with time.

 

[nandixon]

Hi,
I do not know all about the criteria of eligibility for the RITUXAN, just that 80% of these patients have a low level ACTH or undetectable and especially a very low level of the NK lymph cells.

When you say "ACTH" do you actually mean ADH, i.e., antidiuretic hormone, also known as vasopressin?