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Just had first appt with Dr. Kaufman

bspg

Plant Queen
Messages
547
Location
USA
**The original post has been edited for brevity

Whew, what a whirlwind. I just got home from a 3 day trip to CA to see Dr. Kaufman and I am EXHAUSTED! Thank god for my wheelchair and my amazing, loving boyfriend who pushed me around and took care of so many things. :heart: I would not have been able to do this trip without him. He is my rock!

I'm too tired to do a full synopsis but he spent a lot of time with me and went over my entire history. My diagnoses (in addition to ME/CFS) were: persistent EBV infection w/positive IgM, compound heterozygous MTHFR, strongly positive SIBO, and probable MCAS and dysautonomia (need more testing).

He'd like me to have the Cell Trend test, more thorough tick disease testing, and a saliva cortisol test (if/when I can afford all those things).

I'm going to start antivirals, antibiotics, and a few other things soon. It's all pretty overwhelming but SO nice to finally have an experienced doctor and the chance to get some help! :star:

I'm not sure when I will have my next appt. I'm poor so it'll probably be awhile. I really liked Dr. Kaufman and was very happy with my experience at the clinic. It sure was a nice change from the ¯\_(ツ)_/¯ and exercise/antidepressant recommendations I've had over the last two years!!

ETA: I'm happy to answer questions about my experience/trip if anyone is curious.
 
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deleder2k

Senior Member
Messages
1,129
Interesting. Regarding the Cell Trend test I don't know why it would be relevant clinically. If you're poor then ask Kaufman what it will show, and whether he bases treatment from the results given by the test
 

bspg

Plant Queen
Messages
547
Location
USA
Interesting. Regarding the Cell Trend test I don't know why it would be relevant clinically. If you're poor then ask Kaufman what it will show, and whether he bases treatment from the results given by the test

I recorded our appt. (my memory is horrible) and just listened to it all the way through again. He thinks that autoimmunity is actually a strong driver of my illness, not just a potential problem in the future (I misunderstood that the first time). The cell trend test would help confirm this. The results would help him guide my treatment.
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Interesting. Regarding the Cell Trend test I don't know why it would be relevant clinically. If you're poor then ask Kaufman what it will show, and whether he bases treatment from the results given by the test
My experience with Dr K was similar. Even though I had a lot of good lab work going to him, the lab work he ran, including the Cell Trend test, uncovered the depth of what's wrong with me, and focused my treatment in an entirely new direction.

I saw him twice in California, and then by phone appointments and email since. He has been good about supporting and coordinating with the care I'm getting from doctors here at home and his recommendations have been very methodical and made sense. It cost money to see him, but it was well worth it in terms of accelerating my treatment.
 

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
My experience with Dr K was similar. Even though I had a lot of good lab work going to him, the lab work he ran, including the Cell Trend test, uncovered the depth of what's wrong with me, and focused my treatment in an entirely new direction.

I saw him twice in California, and then by phone appointments and email since. He has been good about supporting and coordinating with the care I'm getting from doctors here at home and his recommendations have been very methodical and made sense. It cost money to see him, but it was well worth it in terms of accelerating my treatment.

Can I ask what your Cell Trend test results were and what treatment you are doing as a result? My tests have just been sent off but within phoenix rising there seems to be different views in if these results should be used to indicate treatment at this stage.... Thanks!
 

Aroa

Senior Member
Messages
109
Location
Spain
Thank you all for sharing your experiences.

Could any of you who went through the Cell Trend Test tell us which specific antibodies were you tested for ? There are so many on their web
 

bspg

Plant Queen
Messages
547
Location
USA
From things my friend has said about Dr. K, it seems like he really cares about his patients.

I was really impressed with his thoroughness and what I believe to be a true desire to help. :heart:

Most of the doctors I've seen are hurried and trying to get through the appt with the smallest amount of work. This was definitely not the case with Dr. Kaufman.
 

Daffodil

Senior Member
Messages
5,875
I was really impressed with his thoroughness and what I believe to be a true desire to help. :heart:

Most of the doctors I've seen are hurried and trying to get through the appt with the smallest amount of work. This was definitely not the case with Dr. Kaufman.
yes..my friend needed an urgent appointment because he was so sick and Dr. K squeezed him in and even called him on the phone out of concern. I was very impressed. Said he would go out of his way to find out how to accommodate a treatment my friend needed. Said he would push to try to get insurance to pay for something etc. Dr. K must be newish to this disease because the older docs are all jaded, bitter and mean lol
 

bspg

Plant Queen
Messages
547
Location
USA
yes..my friend needed an urgent appointment because he was so sick and Dr. K squeezed him in and even called him on the phone out of concern. I was very impressed. Said he would go out of his way to find out how to accommodate a treatment my friend needed. Said he would push to try to get insurance to pay for something etc. Dr. K must be newish to this disease because the older docs are all jaded, bitter and mean lol

I'm not sure how long he's been treating ME/CFS patients but he worked with HIV and AIDS patients for years prior to ME/CFS. I think this is partly why he is so compassionate towards PWME -- he knows how sick they are.
 

perrier

Senior Member
Messages
1,254
What are the differences between Dr Gordon and Dr Kaufman. Anyone know?

And is it still possible get an audience with Dr Kaufman?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@bspg @Learner1
Did either of you travel to see Dr K? I will be travelling and therefore will need to pay for all tests out of pocket. I'm curious to know the ballpark for how much this will cost.
Yes, I live about 700 miles away, so I was able to spend a long day traveling to see him for a midday appointment both times. After that, I've been able to have phone appointments.

Though he was an out of network doctor, all the tests he ran except the CellTrend (which was done in Germany) were covered by my insurance. They went to LabCorp and Quest and Dr K was sensitive to cost. He also battled my insurance to get me IVIG.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
What are the differences between Dr Gordon and Dr Kaufman. Anyone know?

And is it still possible get an audience with Dr Kaufman?
I haven't seen Dr. Gordon but know s lot about him. He seems to be a functional medicine doctor, similar to what my naturopathic doctor does. The 2 doctors together have overlapping skills, but they have deeper knowledge in different areas.

Things my functional med doc does (and likely what Dr. Gordon can do):

- looking at the whole patient and ensuring the body is coping well with Dr. K's treatment
- lab testing for nutrients, hormones, gut health, food allergies, infections, etc.
- customizing a hormone program
- customizing an oral and IV nutrient program, based on lab work and genetic SNPs
- prescribing drugs, hormones, probiotics, nutrients and botanicals, like mushrooms, curcumin, artesunate, berberine, samento, banderol, etc.
- oxygen therapies

Things Dr. K is taking the lead on:

- getting to the bottom of infections, HPA axis issues, immune dysfunction and autoimmune issues
- devising the most advanced treatment plan available to address infections and immune issues, using up to the minute research and his copious experience with ME/CFS patients
- managing extraordinarily ill patients.

We are complex patienrs. Having more than one smart doctor on your side can be helpful, though you must manage the relationships wisely to get the most out of them and not waste anyone's time or your money.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thanks @Learner1

Did you have to travel back home in order for the labs to be covered or did insurance pay even though you went to SonoraQuest in a different state?
I have a standard BSBS plan, not based in CA or the state I live. I meant Quest Diagnostics - not sure about Sonora Quest. The blood was drawn in Mountain View. I've had other follow up labs drawn here at home.

Dr K has told me what he wanted done and either sent me a LabCorp requisition to take to the lab, or my doctor here at home was happy to order the tests. Given my treatment protocol and drugs in on, I have labs done every 2-3 weeks to monitor my blood and liver.

Even though it cost me about $2500 between travel and appointments, it has made a dramatic difference in my treatment, and where I was treading water before having made some good progress, I believe that the path I'm on with Dr K, along with the local functional medicine support, is giving me the best shot at being cured.