Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Seeking information on long-term outcomes with Dr. Kaufman

Discussion in 'ME/CFS Doctors' started by ivorin, Oct 25, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    That's such a moving story @Vojta, I'm glad you got to him

    Wanted to add that even if Rituximab doesn't bring about full remission, there are many other drugs that are used in classical autoimmune conditions that often work when Rituximab doesn't
     
  2. ivorin

    ivorin Senior Member

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    @Vojta I feel you, I have similar problems - every time I have any stimulation, even writing a message like this or reading others my autonomic nervous system starts to overreact - my bloodflow gets disregulated and I have weird mental symptoms, headaches and pressure. I have also gone through the idea of taking my life but my mother is helping me get to dr. Kaufman, I can't really walk from the bloodflow disregulation from POTS. Keep yourself together through it all, we still have a good chance from therapy once we receive it! It is worth fighting for!
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    I am so moved by your stories @Vojta and @ivorin, and look forward to reading about your upcoming journeys to CA, and am your biggest fan (both of you)!
     
    Last edited: Oct 30, 2017
  4. ivorin

    ivorin Senior Member

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    The American Adventures Of The Two Sick Slavs :)
     
  5. pattismith

    pattismith Senior Member

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    I am with you too Vojta and ivorin, you are so courageous, you are examples for me like @Gingergrrl :)
     
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  6. Silencio

    Silencio Senior Member

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    @Jesse2233 and @Diwi9 — both of you seem to have made remarkable progress w Dr. Cheda. I’m curious if you would say what treatment helped you both? I have been waiting too on the rituximab result. I’m in Europe but am an American citizen so could do treatment in either. California is just so far and so expensive that I’ve held off. I would need a family member to go with me. But knowing people are really progressing changes things..
     
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  7. Diwi9

    Diwi9 Senior Member

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    Her approach with me was to start with lots of lab work. The testing is very expensive and mostly out-of-pocket, but I have elected to continue to do more lab work and she has been supportive.

    What anyone will find with Dr. Chheda, and likely with Dr. Kaufman, is that you have a doctor who wants your full story, all the details of each of your symptoms. Treatment can progress slowly so that one can determine what is working and not working. The wait between appointments can be long if something is not working.

    There has been no miracle treatment, rather a very methodical review of my history and labs, with support in addressing symptoms. This has led to small stacked improvements to my health. My treatment has been conservative so far (oddly, Rifaximin really made the most difference, but I'm now on an herbal treatment for SIBO and not doing as well on it). I am still moderate, but I am no longer in bed most of the day everyday, and I can drive again. I worked about six hours total last week and had family over for dinner one night. Had a small crash on Friday. This weekend I rode my horse and went shooting, I'm taking today as a rest day as I can feel I over-exerted this weekend. Basically, I can do one activity per day safely. Activities were not possible a few months ago. So, I still crash, have body pains, insomnia, intermittent low grade fevers, and episodes of brain fog...but have pieces of my former life back. I don't think this would have been possible without treatment and I hope to improve more with continued treatment.

    @Silencio - I hope this information helps you and anyone else with similar questions. It's hard to wrap one's head around the fact that there is so little medical support or help available to people with this illness.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    @Silencio

    IVIG, mHBOT, nutritional IVs, LDN

    Dr Chheda has helped with IVIG / LDN dosing and testing to find pathogens to target with antimicrobials
     
  9. Diwi9

    Diwi9 Senior Member

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    @ Silencio - Sorry I read "if" treatment has helped...not which.
    - Desmopressin
    - Methylation (B-12 injections & methyl-folate)
    - MCAS protocol for brain fog (antihistamines & Neuroprotek...I don't think the ketotifen is helping)
    - LDN
    - Equilibrant
    - Rifaximin (for SIBO...the herbal is not working)

    Will likely do another course of Rifaximin and may try Flagyl. We've discussed antivirals and other antibiotics. IVIG & Rituximab will be discussed again after Phase III clinical trials.
     
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  10. Silencio

    Silencio Senior Member

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    Thank you so much @Jesse2233 and @Diwi9! Good to know what protocols people are trying with these doctors. I have already tried a number of these with no massive progress, although slow minuscule improvement over time that I don’t attribute to any one thing.
     
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  11. Silence

    Silence

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    I just called Dr. Kaufman at his new office and they told me he is not taking any new patients. They only gave me the option of seeing Dr. Cheda who is scheduling as early as late november. They require a 300 dollar deposit at the time of scheduling that will go towards the total cost of initial consult which is $650.00 dollars. I thought I read someone mention a couple months ago that he was charging somwhere in the 500s for intial? First followup is $585.00 dollars. @ivorin have you already scheduled an appointment? cuz I cant seem to get an appt with Dr. K.
     
    Joh likes this.
  12. Learner1

    Learner1 Professional Patient

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    You'd likely be in good hands with either doctor. They seem to be devoted to helping patients like us, and though they charge a good price for their services, the value I've gotten has made it worthwhile, and we are complex, needy patients that require work to help.

    You can expect a careful review of your entire history and a thoughtful approach of customizing a treatment plan from a wide array of treatments that are on the cusp of the latest research, along with support for how to get it paid for, with correct ICD 10 coding, etc.

    There are no guarantees of success, but we have complex, difficult problems, and there are few places in the world to go for help. I wish there could be more plentiful resources available all over the world, that research that is further along, and that there are more concrete and proven treatments that work, but we still seem to be on the wild frontier with some very brave doctors willing to help us try to get well.
     
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  13. Silence

    Silence

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    Thanks. I am just becoming more and more disenchanted with so called specialist. I am skeptical if I'll be able to get any help, espcially after seeing Dr. chia , and KDM this year( along with others- Immunilogist, cardiologist, geneticist, neurologist, neuromuscular specialist, mitochondrial specialist, functional medicine doctors) with not much help and after spending more than 10,000 dollars out of pocket which has significantly emptied my savings. I am just left with a pile of test results that no one knows what to do with or I cant tolerate treatment. I am sure these doctors have very good intentions..... (probably) but its like a crap shoot or maybe my case is just too complex and severe.
     
    Last edited: Oct 30, 2017
  14. Gingergrrl

    Gingergrrl Senior Member

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    I suspect (although I could be wrong) that this will change and he will take new patients again in the future but he must be full at present.

    My initial consult back in 2014 was around $450 (if I remember correctly) and had no idea what the initial consults are now.

    I have never seen KDM and will never comment re: a doctor that I have not seen. I did a one-time consult w/Dr. Chia but it was not helpful. I live (fairly) local to him and he took my insurance, so it was not a financial loss. My experience of Dr. Chia was that you are diagnosed with ME/CFS from enterovirus before you even walk through the door. Versus with Dr. K, he takes a thorough history, answers every single question you have, does extensive testing (some general and some very specific to each patient) and then does his best to figure out each case without any assumptions (which is what I needed). It was not fast, and I have been working with him for over three years, but I actually now believe that I could make a full recovery, and I was near death in 2015 and in hospital with anaphylaxis reactions to all food (amongst many other symptoms).
     
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  15. ivorin

    ivorin Senior Member

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    Yes, I have, it's curious as he still had some open slots just a week ago, maybe they offered me one because I'm travelling from far off? The prices are the same I was told.

    The doctors do work together and have the same protocol for testing and treatment it seems, so it may not be that bad to go with dr. Chheda - the other patients seem to agree on this.
     
  16. cb2

    cb2 Senior Member

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    @Gingergrrl was getting out of mold part of your recover protocol? I am glad I caught this thread. , I live pretty close to Mountain View. I just met the new Dr. Bonilla at the Stanford CFIDS clinic yesterday. Have enjoyed reading all the success people are reporting with Dr. K. Maybe I need to make a switch.

    Is anybody with Medicare able to get any reimbursement at all ?

    My primary doctor started me on IV IgG and me I can't really see if it's benefiting she has me on 15grams a month.

    @ivorin when are you moving to California? Housing can be tricky here I hope everything works out for you.
     
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  17. ivorin

    ivorin Senior Member

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    @cb2 will be there in December, starting off with airbnb and then probably moving to some people we know in San Jose. I'll report how it goes with Dr. K for everyone who wants to know!
     
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  18. cb2

    cb2 Senior Member

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    @ivorin I'm glad you have friends to stay with in San Jose. Looking forward to hearing your progress.
    December is just around the corner .
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    Yes, definitely, and I truly believe if we had not moved away from the apt with the toxic mold, I would never have stood any chance at recovery and probably would still be having anaphylaxis to all food.

    I am not familiar with Dr. Bonilla but if you are already working with him (her?) and it is going well, I don't think you need to change doctors?

    That is a very low dose and I was wondering, are you doing SCIG (sub-q?) version?
     
    ivorin likes this.
  20. cb2

    cb2 Senior Member

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    @Gingergrrl how did you realize toxic mold was contributing? i go next week to lyme/mold dr to determine if my apartment could be making me sick. i am in the sf bay area and trying to move here is not something i can afford, i will have to leave and go quite far away , I am afraid. I am glad you were able to move.

    I just met dr bonilla yesterday, he is new and on montoyas team. I have been going to stanford since 2011 and have not had any improvement.. but maybe with dr bonilla, who he said he likes to keep moving forward, hopefully something will happen, although he didnt think the iv igg was a good idea. i was dismissive of it. bonilla did add famvir to the acyclovair i have been taking for years..he has me starting at 125 and then i will double each week up to 500 2x a day.

    yes on iv igg, just had 15 grams today.. they put an IV in the right arm and one in the left arm for the lactated ringer.. the infusion rate we went at 100. last time i had an infusion i got horrible hsv-1 out break inside my gum (source of original infection) and terrible diarrhea..still have some of the later.

    how much igg do you get? even the nurse at the infusion center said i was on a very low dose and a very slow rate.
    thanks
     
    Gingergrrl likes this.

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