Seeking information on long-term outcomes with Dr. Kaufman

[Gingergrrl]

He individualized diagnosis and treatment for each patient.
Treatments I know he uses include IV immunoglobulins, Rituximab, antivirals, antiretrovirals, antibiotics, MCAS meds, POTS meds, vitamins, and amino acids. He is excellent at ordering various diagnostic tests, including labs, cultures, imaging, etc.

I agree with this and he assesses each case as an individual (whether ME/CFS, Lyme & co-infections, MCAS, POTS & Dysautonomia, SIBO, Autoimmunity, Immune deficiency, etc) and creates an appropriate treatment plan. He is kind and compassionate, smart, and has excellent follow-through. He sees patients from all over the world but IMO, it would be very challenging without US health insurance.

The office appts and phone consults are private pay (for everyone) but US health insurance will cover the blood work, medications, and other treatments in most cases, if you fight hard enough (but patient's co-pays would of course vary depending which insurance you have).

 

[MEWarrior]

@ivorin - I'm very sorry to hear of your suffering. I cant really advise what will help you, but all I can say is the single most important thing in my case I believe is persistence. You just have to keep going to your doctor, keep trying new things again again and again. Don't give up. Just stay persistent at all costs. Dr Kaufman is a really good sounding board for this and will help you to continue to try new things.

On the more scientific side of things, I had a lip biopsy done at mayo clinic which did find I had white blood cells invading my tissues at a higher level than normal which is proof of an autoimmune type issue. This is something worth exploring in my opinion.

So true. We must keep striving for beautiful experiences always come from striving without expectation. Like many of you, my hopes and expectations have become so obliterated that, ironically, I find an increasing number of opportunities to find joy in the otherwise most overlooked areas such as nature and simply smiling at people while maintaining eye contact. Perhaps, it is because of my increased reflection but it also feels as though this illness has given me a honed sense of consciousness due to my hypersensitized central nervous system.

 

[MEWarrior]

Update:

I am experiencing increasing chest and neck pains as well as neuro-mental issues. The meds I've been given, that I listed before don't seem to be helping at all with MCAS (which I don't believe I have) and could possibly causing me to feel worse.

I feel very torn about submitting myself to Rituximab treatment based on the Cunningham panel given the information provided by Riman. The only other proof of autoimmune involvement is a slightly positive Celltrend panel which is also a very questionable finding.

I don't know what to do. I am declining and have nowhere else to go. I don't think I will make it for another few years which we need even by the most positive expectations. I am unhappy and in pain beyond what I could have even have dreamt before ME, I want to live so badly but whatever I try just keeps backfiring and making me worse. I feel like this has only one way of ending and that's with me taking my own life.

I really need help with coping with the sadness and loneliness but I have extremely bad reactions to antidepressants and supplements meant to help with mood and stress, and I've no idea what to do.

I realize we do not know one another. Even so, your courageously honest posting moves me in many ways. I relate to your despair and sense of isolation. Moreover, I relate to your warrior mentality to keep going. After all, if we were completely well, then that is what we would do.
We need to keep going for many reasons. One of the best reasons I know is that we touch each other’s lives with a profundity that is ever so far beyond what we have begun to understand. For example, I have recently just joined this terrific group of fellow sufferers and just your existence has eased my pain and suffering. In fact, I have begun to cry as I write this.... I am crying because I know I am you and you are me. We may not know all the explicit answers to everything, but it does not mean we do not understand the spirit of knowing we have a transcendent bond. I hope you find some peace in what I am trying to convey because it is most heartfelt. Peace to you.

 

[pibee]

Another excerpt from the study: "Ten out of 21 (48%) healthy controls had positive CaMKII results as compared to 35 out of 53 (66%) in the study sample. Seventeen had at least one positive autoantibody titer, resulting in a total of 18 (86%) healthy controls with at least one positive value on the Cunningham Panel, compared to 92% in the study sample.

also in Dec 2017 there was a corrigendum to the article https://www.ncbi.nlm.nih.gov/pubmed/29153602 by the authors but i can't get access to it

I am surprised this test is being suggested frequently by dr Kaufman or anyone else, since it's positive for 86% healthy controls.
Does this have any value for the insurance in USA ?
I know I talked to some PANDAS moms who have confirmed diagnosis in Croatia, classical acute rapid onset after strep, and even managed to get treatment with IVIG, but they said nobody accepts this test and they advised me long time ago to just skip it because of the cost.
They diagnose PANDAS if you're 17 but if you're 19 they wont diagnose or treat it or accept diagnosis from specialists from USA.

Since I am 99% sure I have PANDAS from early childhood, which got extremely worse (with also ME progression ) when I was 18 yrs and 9 months , not sure what to do.
I have got tics and chorea movements even (which would be Sydenham's chorea) from last year.

 

[Gingergrrl]

I am surprised this test is being suggested frequently by dr Kaufman or anyone else, since it's positive for 86% healthy controls.

I am his patient and he has never mentioned this test to me and I’m not even sure what it is? He definitely does different tests on different patients.

 

[Dechi]

How are you doing @ivorin ?

 

[Gingergrrl]

How are you doing @ivorin ?

I had been wondering about this, too, and hoping you will update us how you are doing @ivorin?

 

[pibee]

I am his patient and he has never mentioned this test to me and I’m not even sure what it is? He definitely does different tests on different patients.

No wonder he didnt suggest it to you, you have enough other antibodies, and also no cognitive and psychiatric symptoms and this test is for that -PANDAS.
Not sure how reliable it is for children, probably not much because they dont approve IVIG even for kids based on this test, at least not where I live, hah, but for adults is completely useless, at least based on the research posted.

 

[Gingergrrl]

@pibee, I forgot, were you thinking of traveling to the US to see Dr. K? I think he could help you but then it would be incredibly difficult, probably near impossible, to get IVIG here without US health insurance so I am not sure if it would be worth it.

 

[pibee]

@pibee, I forgot, were you thinking of traveling to the US to see Dr. K? I think he could help you but then it would be incredibly difficult, probably near impossible, to get IVIG here without US health insurance so I am not sure if it would be worth it.

I contacted them and it all comes down to RItuximab and/or IVIG. Rituximab I am not willing to risk because of mistery ME and IVIG i'll see if i can get or pay in Europe.
The other drugs I am already getting like antivirals, MCAS, ... so traveling right now would be just too much money.

I need to think about the future in 5-10 years when if there is something that helps, I can afford it.

 

[Rlman]

anyone know how @jeff_w is doing?

 

[Rlman]

anyone know how @jeff_w is doing?

just found his posts in another thread. looks like the surgery was a success! Yay!

 

[Daydreamer45]

Some of my friends have been helped tremendously by Dr Kaufman. Others have been really hurt by his prescriptions. Some haven’t really benefitted after spending thousands of dollars.

I haven’t been seeing him long enough to judge yet. He’s a very knowledgeable, intelligent, conscientious Dr. His treatments are fairly experimental, which can be good or bad depending on how you respond.

Just a heads up, they don’t accept insurance and a lot of the tests and supplements are really expensive. So be prepared to spend easily $10,000. Of course, if he can help you a lot that’s worth it!

 

[perrier]

Some of my friends have been helped tremendously by Dr Kaufman. Others have been really hurt by his prescriptions. Some haven’t really benefitted after spending thousands of dollars.

I haven’t been seeing him long enough to judge yet. He’s a very knowledgeable, intelligent, conscientious Dr. His treatments are fairly experimental, which can be good or bad depending on how you respond.

Just a heads up, they don’t accept insurance and a lot of the tests and supplements are really expensive. So be prepared to spend easily $10,000. Of course, if he can help you a lot that’s worth it!

Dear daydreamer
Thanks for this info. What sorts of prescriptions were given which hurt people? And what ‘type’ of patients tend to benefit? Eager to hear any useful information.

 

[Daydreamer45]

Dear daydreamer
Thanks for this info. What sorts of prescriptions were given which hurt people? And what ‘type’ of patients tend to benefit? Eager to hear any useful information.

The prescriptions which hurt people were Valcyte, LDN, numerous antibiotics for tickbourme illnesses, and IVIG.
However, these have also helped other people. So I hate to scare people away from them.

The only one of the above I have tried personally was LDN, and I responded poorly to it. But no long term damage.

 

[Daydreamer45]

@perrier (Sorry, I’m a new member and still learning the ropes!)
As for what people tend to benefit, that’s hard for me to say...

 

[perrier]

The prescriptions which hurt people were Valcyte, LDN, numerous antibiotics for tickbourme illnesses, and IVIG.
However, these have also helped other people. So I hate to scare people away from them.

The only one of the above I have tried personally was LDN, and I responded poorly to it. But no long term damage.

Dear daydreamer
I’m very interested in your experience. LDN shouldnt cause any long term I’ll effects. As for antibiotics, I have seen many tragic results. But I never heard about damage from IVIG. As for Valcyte, I do wonder what may have happened. If you have more info, I’m all ears...

 

[Daydreamer45]

Dear daydreamer
I’m very interested in your experience. LDN shouldnt cause any long term I’ll effects. As for antibiotics, I have seen many tragic results. But I never heard about damage from IVIG. As for Valcyte, I do wonder what may have happened. If you have more info, I’m all ears...

For me there were no long-term bad side effects to LDN.
My friend was on antibiotics as well as LDN when he went into sharp decline, which he hasn’t recovered from years later. So it is possible it was more the antibiotics than the LDN.

The IVIG was another friend, and it was high dosage (you take it once and it’s supposed to last a long time, as opposed to regular infusions). She was also on antibiotics for tickborne illnesses though. I just remember her response to the IVIG being terrible and sending her way backwards. She hasn’t recovered either :/ (altho again, how much is the abx & how much is the IVIG Im not sure)

I hope this helps...

 

[Daydreamer45]

Dear daydreamer
I’m very interested in your experience. LDN shouldnt cause any long term I’ll effects. As for antibiotics, I have seen many tragic results. But I never heard about damage from IVIG. As for Valcyte, I do wonder what may have happened. If you have more info, I’m all ears...

As for my own response to LDN, i slept just fine but I would wake up in the mornings feeling like I hadn’t slept a wink. Id be even more exhausted than usual all day. And it kept getting worse. So I quit it.
It took a couple weeks to bounce back, and then I was fine.

But I know other people who it’s really helped, so if you’re considering it, please don’t let this scare you away...

 

[Gingergrrl]

For me there were no long-term bad side effects to LDN.
My friend was on antibiotics as well as LDN when he went into sharp decline, which he hasn’t recovered from years later. So it is possible it was more the antibiotics than the LDN.

The IVIG was another friend, and it was high dosage (you take it once and it’s supposed to last a long time, as opposed to regular infusions). She was also on antibiotics for tickborne illnesses though. I just remember her response to the IVIG being terrible and sending her way backwards. She hasn’t recovered either :/ (altho again, how much is the abx & how much is the IVIG Im not sure)

From what you reported, my guess is that your friend's decline was more due to the antibiotics vs. the LDN or the IVIG. Obviously I do not know for sure, and I personally did not tolerate LDN, but never had any lasting bad effect from it.

High dose IVIG has literally given me my life back (along with another treatment) and I hate to scare people away from it, IF they are a potential candidate with proven autoimmunity.

I also had a horrifically adverse neurotoxic reaction to an antibiotic (Levaquin) that nearly tore my right triceps tendon in 2010. I was able to improve from the systemic neurotoxic reaction after 1.5 years but the arm injury still persists EIGHT years later (and the Levaquin has nothing to do with Dr. Kaufman and was from an ENT I am speaking in general).