Seeking information on long-term outcomes with Dr. Kaufman

[Silence]

I called Dr. Kauffman's office not to long ago because I was interested in seeing him also. They told me he's not accepting any new patients. The only person who was open was Dr. Cheda. Has this changed recently?

 

[ivorin]

I called Dr. Kauffman's office not to long ago because I was interested in seeing him also. They told me he's not accepting any new patients. The only person who was open was Dr. Cheda. Has this changed recently?

Yes, they moved to a new office, you can get an appointment as early as December - they are calling the new office Center For Complex Diseases.

@Gingergrrl I will have to wing it for now, it will all depend on what he thinks I need to be taking. If it's not IVIG or RTX then I can manage in Croatia, we have "simpler" meds available, if it's IVIG I will start in the US and see how it goes. If it's RTX, I will take it at Kolibri in Norway. Moving to the US is a definite possibility, both me and my mom have been Endeavour and Fulbright scholara respectively so that could be done if I cm manage to get to at least a working state.

I believe I am no longer clear cut as since January, after some sort of tremor episode with an electroshock-like attack at the back of my head I have been experiencing constant sensory overload, headaches at the back of the skull, worsening orthostatic intolerance and various mental symptoms like mood swings and severe anxiety. I am scared I may be suffering from some comorbid condition that isn't as obvious. I am also scared this may have mental health connotations, and this would only complicate my status here in Croatia as ME is already treated as psychosomatic and this (CBT, GET and psychiatric meds) has ruined my health in the past. I hope Dr. K can figure it out, I'm at my wit's end over all of it.

 

[Learner1]

Yes, they moved to a new office, you can get an appointment as early as December - they are calling the new office Center For Complex Diseases.

@Gingergrrl I will have to wing it for now, it will all depend on what he thinks I need to be taking. If it's not IVIG or RTX then I can manage in Croatia, we have "simpler" meds available, if it's IVIG I will start in the US and see how it goes. If it's RTX, I will take it at Kolibri in Norway. Moving to the US is a definite possibility, both me and my mom have been Endeavour and Fulbright scholara respectively so that could be done if I cm manage to get to at least a working state.

I believe I am no longer clear cut as since January, after some sort of tremor episode with an electroshock-like attack at the back of my head I have been experiencing constant sensory overload, headaches at the back of the skull, worsening orthostatic intolerance and various mental symptoms like mood swings and severe anxiety. I am scared I may be suffering from some comorbid condition that isn't as obvious. I am also scared this may have mental health connotations, and this would only complicate my status here in Croatia as ME is already treated as psychosomatic and this (CBT, GET and psychiatric meds) has ruined my health in the past. I hope Dr. K can figure it out, I'm at my wit's end over all of it.

You might look into autoantibody panels and a Genova Diagnostics NutrEval. If you PM me. I have links to how you can get it in Europe.

 

[Gingergrrl]

@Gingergrrl I will have to wing it for now, it will all depend on what he thinks I need to be taking. If it's not IVIG or RTX then I can manage in Croatia, we have "simpler" meds available, if it's IVIG I will start in the US and see how it goes. If it's RTX, I will take it at Kolibri in Norway.

Sounds like a good plan.

Moving to the US is a definite possibility, both me and my mom have been Endeavour and Fulbright scholara respectively so that could be done if I cm manage to get to at least a working state.

Very impressive

I believe I am no longer clear cut as since January, after some sort of tremor episode with an electroshock-like attack at the back of my head I have been experiencing constant sensory overload, headaches at the back of the skull, worsening orthostatic intolerance and various mental symptoms like mood swings and severe anxiety. I am scared I may be suffering from some comorbid condition that isn't as obvious.

I have no idea what he will suggest but it sounds like it would be good to have an MRI of the brain and autoantibody tests like NMDA, etc.

I hope Dr. K can figure it out, I'm at my wit's end over all of it.

I hope so and please keep me posted what happens! Do you have an appt in December? I remember when I was at OMI (I haven't been to the new office in person yet), there were literally patients from all over the world including Europe, Russia, South Africa, Australia, etc, so I know it can be done without US insurance even though I do not know exactly how.

 

[ivorin]

@Gingergrrl I've had an MRI and the usual antibody suspects done already, that's why it's such a mystery - and not the type you wanna be involved in

I guess everyone understands that money and possessions fade in importance in comparison to health. You get just one life, you can get a car or apartment many times over. Although, to be honest, I cried when I sold my old bike a few weeks ago, so many lovely memories that might never be relivable. But you have to try, after all. Not giving up before I've tried what I can!

 

[jpcv]

please tell us about your future appointments with dr /k

 

[ivorin]

please tell us about your future appointments with dr /k

Will do!

 

[kms1990]

I will try to post something with a lot more detail in the future, but I think Dr Kaufman is the best Doctor I have seen without question for CFS and frankly for anything. (I've seen Natelson, Klimas, Rey, Stewart, Bransfield the list goes on and on. Likely close to 30 doctors by now) I have an especially strange case and he has done everything possible to help me and we continue to try new things. Ive been his patient over two years now and can say for sure he's not the type of doctor to give up on you if his standard protocol doesn't work. A lot of CFS docs out there are like that he is not and really wants people to get better from whatever affliction they have.

 

[Gingergrrl]

but I think Dr Kaufman is the best Doctor I have seen without question for CFS and frankly for anything.

really wants people to get better from whatever affliction they have.

I agree with these statements as well. Can you remind me @kms1990, do you feel that you have classic ME/CFS with no question that it is your diagnosis or that you have something else going on in addition to, or instead of ME? So many people who found they had auto-antibodies have contacted me in the last 1.5 yrs that I can't remember if you were one of them and apologize!

 

[Gingergrrl]

@Gingergrrl I've had an MRI and the usual antibody suspects done already, that's why it's such a mystery - and not the type you wanna be involved in

Sorry, I missed this post last night! So you already had an MRI of the brain and were tested for anti-neuronal (paraneoplastic) autoantibodies @ivorin? Were you negative for anti NMDA?

I guess everyone understands that money and possessions fade in importance in comparison to health. You get just one life, you can get a car or apartment many times over.

Agreed.

Although, to be honest, I cried when I sold my old bike a few weeks ago, so many lovely memories that might never be relivable. But you have to try, after all. Not giving up before I've tried what I can!

I am so sorry about having to sell your bike and I had many items that I was saddened to lose to the mold. I often still forget they are gone (2 yrs later) and look for something and then remember that I no longer have it. I am really hoping and praying that Dr. K finds the cause of your illness, whatever it might be, and that you will get some relief.

 

[dannybex]

@Gingergrrl
On a sidenote, I sent Amy Poahl's hypothesis paper to him a few days ago and he actually read it and thanked me for it and was overjoyed about having references for some of the stuff he said he was preaching for a while now. I can tell you right now, KDM wouldn't even have opened my mail - no joke.

Personally I would stay as far away from Amy Proal as possible:

http://forums.phoenixrising.me/inde...microbiologist-with-me-cfs.55538/#post-929172

You have a much, much better chance of improving by seeing Kaufman, or others at OMF or elsewhere.

Best of luck @ivorin.

 

[ivorin]

Personally I would stay as far away from Amy Proal as possible:

http://forums.phoenixrising.me/inde...microbiologist-with-me-cfs.55538/#post-929172

You have a much, much better chance of improving by seeing Kaufman, or others at OMF or elsewhere.

Best of luck @ivorin.

Just read through your summary and I had no idea she was in the wacky Marshall boat, creepy stuff.

That said, the article itself still has some merit as it goes through the current research and summarizes it quite quaintly, imho at least

 

[ivorin]

@Gingergrrl Negative, yes, and I personaly through anti-nmda was my problem, seems not :/

Thanks so much for the kind wishes, I will try to post how the diagnostics and therapy go - if he can figure out what's going berserk in me, he can help anyone - that's worth some diary posts for sure.

 

[pattismith]

@ivorin , I feel confident that Dr Kaufman will help you. I would certainly go and see him if possible.

I understand all the sacrifices you are doing to make it possible, I am with you too.

 

[ivorin]

@ivorin , I feel confident that Dr Kaufman will help you. I would certainly go and see him if possible.

I understand all the sacrifices you are doing to make it possible, I am with you too.

Thank you, so nice of you to send some good vibes

 

[dannybex]

Just read through your summary and I had no idea she was in the wacky Marshall boat, creepy stuff.

That said, the article itself still has some merit as it goes through the current research and summarizes it quite quaintly, imho at least

I agree, there is some merit in her letter. I just wonder if it's overall intent is to (re)introduce people to that dangerous protocol...

 

[ivorin]

I agree, there is some merit in her letter. I just wonder if it's overall intent is to (re)introduce people to that dangerous protocol...

You've spooked me out away from her now haha

 

[kms1990]

I agree with these statements as well. Can you remind me @kms1990, do you feel that you have classic ME/CFS with no question that it is your diagnosis or that you have something else going on in addition to, or instead of ME? So many people who found they had auto-antibodies have contacted me in the last 1.5 yrs that I can't remember if you were one of them and apologize!

Yep I am! Tested positive by cell trend and a few other things during testing with Dr K and at Mayo Clinic AZ. On IVIG now, trying to figure out about Ritux.

I don't think I have classic CFS. I think I have some sort of autoimmune illness affecting my circulatory system and possibly mito function.

 

[Gingergrrl]

Yep I am! Tested positive by cell trend and a few other things during testing with Dr K and at Mayo Clinic AZ. On IVIG now, trying to figure out about Ritux.

That's right! Can you remind me which auto-antibodies you tested positive for at Mayo?

I don't think I have classic CFS. I think I have some sort of autoimmune illness affecting my circulatory system and possibly mito function.

I don't think I have classic CFS either vs. an un-named autoimmune disease. But I am not 100% certain.

 

[Vojta]

Although I had only two appointments with Dr. Kaufman, I can't say anything but positive things so far. I can tell you that I have wide range of neurocognitive/neurological symptoms most people here don't have plus all the usual ones and I also have some symptoms he never encountered. I wanted to see him for 2 years before I was in such condition that I could actually write email and travel alone to US (I have to do everything myself). I went there with that he is my last chance before I decide for suicide/euthanasia because I can't do anything to even kill time in isolation and the agony caused by CNS symptoms is unbearable. Because progression and new symptoms were caused by that careless idiot KDM I didn't have much hope but I have now because I'm going to start Rituximab treatment this year.

Some people wait for the ritux study next year. But I asked him if I should wait and he said "no, it won't change anything for you." I think waiting means risking of more damage. Although I did only Celltrend and Cunningham panel. He didn't want to do anymore neurological antibodies like Mayo panel because I had some celltrend and 1 dopamin antibody positive and it was enough evidence for him to go after autoimunity. Even if there were more antibodies (I'm sure there are) it wouldn't change the treatment option which was choice between IVIG and Rituximab. He said IVIG is more expansive long term and I couldn't get regular infusions in Europe so I have chosen Rituximab. I'm trying to get some neuro tests in my country before I start though.

So you are able to get green card/permanent residency in US? Staying/living in US is the biggest expanse in my opinion but I'm on ESTA so I will have to go there and back to EU regularly spending money on flights and expansive short term accomodation. So unless I marry someone (haha) or win green card lottery I can't stay there longer.