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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. Forçe e Honra

    Forçe e Honra Senior Member

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    Dr. K is also very circumspect - there is evidence that I would do well on a particular antibiotic, and that I have underlying bacterial infection (in addition to others). But Dr. K is waiting until I get some other testing first. He also thoroughly explains the reasons he wants to do a test, explains how it is viewed in the wider medical community, why he thinks it would benefit me - and he will not do testing without good reasons to do so (based on history, illnesses, etc.). He has helped my POTS with one medication (it is not gone, but it is helped HR). The LDN helped my digestion in ways I can't even describe. I could go on and on. I wish my brain fog wasn't brain cement and I could actually express what I want to, but I am unable to do so.
     
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  2. Forçe e Honra

    Forçe e Honra Senior Member

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    Wow I am glad it was helpful I feel like I can't get a single thought expressed. No I do not mind telling you I will actually copy and paste my diagnosis from him (but know that I also am diagnosed with asthma and severe allergies to "the outside" according to my allergist) - and my meds:

    upload_2018-5-10_17-41-41.png
     
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  3. Forçe e Honra

    Forçe e Honra Senior Member

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    @perrier And hopefully I'll remember all my meds (but these are just the ones he has me on, not my other meds for asthma)

    Valcyte (I had Epstein Barre Viremia even while taking Valtrex, so he got my insurance to approve this and finally it was no longer circulating in my blood but still have viral stuff)
    Ketotifen (MCAS) 3 x a day
    LDN
    Allegra, 3x a day (MCAS)
    Generic Zantac, 2x a day (MCAS)
    Benadryl, 3x a day (I added that on my own and he has me keeping it, my MCAS was so bad I could not breath, constant shortness of breath different from asthma)
    Cromolyn, 9 vials a day (MCAS)
    Zyrtec, 1 at night (MCAS)
    Singulair 1 at night (MCAS)
    Propanalol, 3x a day for POTS
    He prescribed b12 shots, I stopped as it was too expensive and went to liquid drops (methylation gene issue)
    Methyl folate (same as above)
    He recently prescribed an OTC nasal spray for MCAS have not gotten it yet
    He recently prescribed 1,000 mg TR vitamin C for MCAS (cause I already take a huge amount of H1 I think he said he had to do a different type)
    Quercitin 2x a day for (MCAS)
    I was taking NeuroProtek for MCAS but too expensive so switched to Quercitin
    I take Diazepam as a strong muscle relaxer when my neck is flaring with a migraine - and he said this is something that works on MCAS (but was prescribed by my primary for muscle relaxer)
    He just recently prescribed a Choline/Pantothene (I forget what it is called and have not gotten it yet) for dysautonomia I believe - I may be wrong. He is connected to docs who treat dysautonomia and a ped cardio uses it, and he thinks it would be good for me - but this was our last phone visit and I am probably not saying it correctly but I am waiting on his approval for the ones I found as it did not match exactly what he prescribed
    What else...oh yes a biggie
    Hydrocortisone, 3 x a day (for basically almost no cortisol according to cortisol test)
    He treated me with antibiotics (2) for SIBO when I first started with him Aug last year (I believe they helped). He approved my choice for probiotic, which is PrescriptAssist (although the formula changed recently so stopped and using another)
    I tested positive on one CellTrend antibody and at risk for the other, but not very high at all

    I know I am forgetting so much but hopefully that helps (I think that covers my meds from him - I also have asthma inhalers, nebulizer solution, another kind of muscle relaxer, migraine med, and anti-nausea med I get from my primary doc).

    Really I do think Dr. Kaufman has saved my life. I am still very, very ill. He says my case is very complex and it sure seems it is. There is no quick fix. But he is helping me. He listens. He explains. He will fight insurance for you - I hear of so many people that can't even get Valcyte approved and like I said - he did in 2 days!

    Ah, I don't know what else now, lol - brain fog is really thick.
     
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  4. Forçe e Honra

    Forçe e Honra Senior Member

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    @perrier I started with Dr. K July of last year. And at first, with the meds I started with early aug - I got like a good bit better - like, I would do more cooking (I love to cook and bake) and yes, I had help but I still did it. I even drove my car, with my then 7 year old by myself - not far, just to the park once and the library once less than a mile away and had my wheelchair in the car. My son helped me get the wheelchair out and he'd push me some but I'd also push myself a little. I could do things for like 10 or 15 minutes by myself and I spent more time out in the family room. This lasted for about 2 or 3 months, and then I backslid. Not as bad as just prior to treatment but to like I said. Then my MCAS worsened and the constant SOB really impacted me on top of everything else. I've only been on the valcyte since mid January so I am expecting further gains. So I took 2 steps forward and half or step backward. Recently, for no apparent reason (though coincided with increase in both cromolyn and adding the benadryl) my air hunger went away almost completely.

    Please feel free to ask me any questions you'd like. :) And another thing to show that his treatment is not cookie cutter is I know of someone else who has MCAS and is on a really strong med, Gleevec (?) and even though I'm struggling with MCAS - and my histamine was high as well as my PD2 - he did not put me on it he said he wants to do these other steps first. So that tells me (I already knew) that he truly looks in such depth at your history, your symptoms, you labs, etc. and carefully constructs and adjusts your treatment plan as needed.

    I was recently diagnosed (by him) with EDS. I'm lucky - some people wait years to get that diagnosis.

    He has referred me (in process) to a Stanford specialist (in Neurosurgery) because he wants to rule out a CFS (? spinal fluid leak) due to some symptoms and a car accident preceding my migraines.

    Last September I saw a neurologist in my city, in a respected University medical office. He saw my list of diagnosis I brought (like above) from Dr. K and he literally smiled and told me I was really, really lucky to have a doctor who can treat MCAS and POTS, and that he must be a good doctor! He said he didn't even learn about either in med school (and he is young, though a neurologist).

    I read so many horror stories here and on other forums about patients not being believed, dismissed, and worse - and not only does he believe me, he has explanations - medical reasons - for my problems. That alone is priceless.
     
  5. Daydreamer45

    Daydreamer45

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    @perrier @Jennifer J @Sushi
    Thank you so much for your kind responses! And no worries, yesterday and today were both pleasant :)

    I’m happy to share everything as I continue treatment with Dr Kaufman, which I’m enthusiastic about.
    So glad to hear that what I wrote was informative...
    I see this thread has a lot of new info on it and looking forward to reading that as well.
    Virtual hug!
     
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  6. Daydreamer45

    Daydreamer45

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    Thanks for taking the time to give me an honest response. Based on what you and others have written, it does sound like the antibiotics were the culprit in both cases (I still have TONS to learn about all these treatments)

    Dr Kaufman has worked very hard to give you your life back, and I can fully understand why you have so much respect for him.
    Hopefully he can do the same for me as well! Cheers :)
     
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  7. Daydreamer45

    Daydreamer45

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    I’m so incredibly glad that Dr Kaufman has been so helpful for you, especially after all you’ve gone through ❤️

    I know this must be exhausting for you, so no rush in responding, but I’m curious about two things –

    1. You mentioned he is helping your POTS, can you tell us more about this?

    2. What is your hydrocortisone dosage which you take three times a day? What improvement have you noticed (in terms of symptoms and testing?)

    Thanks so much for sharing everything. As @Sushi said, treatment for our illness is very two steps forward, one step back, and so on...if we’re lucky :) Hoping those steps keep generally moving in a positive direction for you!!
     
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  8. Forçe e Honra

    Forçe e Honra Senior Member

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    I am happy to share if it can help anyone in any way. I have learned so much from this forum although I haven't been on it a lot and still have so much to learn. My brain fog is bad enough that sometimes I really can't grasp the information I read (although that too has improved a bit).

    Thanks for your well wishes and I wish you the same. :)
     
  9. Forçe e Honra

    Forçe e Honra Senior Member

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    I still don't seem to understand how to use multi-quote, I apologize if I've made it difficult to read.
     
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  10. Sushi

    Sushi Moderation Resource Albuquerque

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    Just "select" the text you wish to reply to and a pop-up will appear with two choices: Multiquote and Reply. Reply will quote your text and take you directly to the reply window. Multiquote will allow you to select other passages to reply to (even from different threads). Then when you go to the reply box there will be the option to: "Insert quotes." When you click on that all your quoted passages will be there and you can click on "Quote these Messages." Hope that helps.
     
  11. Forçe e Honra

    Forçe e Honra Senior Member

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    I will try this next time, thank you!
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I agree and he took the most thorough medical history (back when I first saw him in 2014 and he continues to this day), of any doctor that I have ever seen in my life.

    I agree with all of this as well. I have several close friends who are his patients (in real life and here on PR) and each of our treatment plans are different. There is nothing "cookie cutter" about his approach.

    I am so sorry that you are struggling so much right now @Forçe e Honra and feel horrible that I got so behind with e-mails. You have been on my mind and I enjoyed reading your update in this thread (even though I wish you were doing better). But I am happy to hear that your treatments and meds are being clarified and you are having some improvements.

    My Endo said something similar at my appt today. Today was the first time since 2014 that he saw me walk without wheelchair and that I drove myself to my appt. He almost had tears in his eyes and he said that while he personally would not have been comfortable prescribing the treatments that I got from both Dr. K and my MCAS doc, he is so grateful that I found them and that there are doctors out there with this kind of knowledge and expertise.

    Thank you and I apologize if I sounded defensive, I am just so grateful to him and was confused by some of your earlier posts but now I understand better what you were trying to express! Best wishes in your treatment.
     
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  13. Forçe e Honra

    Forçe e Honra Senior Member

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    I agree with all of this as well. I have several close friends who are his patients (in real life and here on PR) and each of our treatment plans are different. There is nothing "cookie cutter" about his approach.

    I am so sorry that you are struggling so much right now @Forçe e Honra and feel horrible that I got so behind with e-mails. You have been on my mind and I enjoyed reading your update in this thread (even though I wish you were doing better). But I am happy to hear that your treatments and meds are being clarified and you are having some improvements.

    @Gingergrrl - Thank you but please do not feel horrible at all, really. I know you are going through a lot with your dog's recovery from surgery and inability to use her back legs - and life - and everything. Do not worry we will touch base when we do and it will be like we spoke the week before. I was so happy to read your updates yesterday about driving and walking more. Just fantastic. So take care and we will connect soon enough :heart::heart::heart::heart::heart::heart:



    My Endo said something similar at my appt today. Today was the first time since 2014 that he saw me walk without wheelchair and that I drove myself to my appt. He almost had tears in his eyes and he said that while he personally would not have been comfortable prescribing the treatments that I got from both Dr. K and my MCAS doc, he is so grateful that I found them and that there are doctors out there with this kind of knowledge and expertise.

    So awesome!
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    That is so sweet and thank you so much. There are such amazing people on this board, it never ceases to amaze me! I look forward to catching up with you in the future, too.
     
  15. Daydreamer45

    Daydreamer45

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    Hi Force e Honra, I have POTS too, and some yrs back it was about your level (Although not sure it ever got to 150 - I’m really sorry, that’s rough). As my health has improved from rest, so has my POTS. But it’s still a problem that would be great to solve.

    Dr Kaufman put me on other meds for my POTS, which unfortunately I had bad responses to. When I see him next I’ll bring up beta blockers like your medication. And maybe that can work for me.

    Thanks for the info on hydrocortisone too. I don’t notice any difference, but I’m also in a lower dose.

    I really appreciate you sharing everything, especially when you’re so low on energy!

    As for understanding the complex info on this site, there is so much for me to learn, and my brain is so slow witted nowadays, that it’s going to be a challenge! But I’ll keep at it
    Very best wishes, Amy
     
  16. Daydreamer45

    Daydreamer45

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    Thank you!! ❤️
     
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  17. Forçe e Honra

    Forçe e Honra Senior Member

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    Best of luck, I think you are in good hands with Dr. Kaufman. The best, imo.
     
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  18. Dallase1

    Dallase1

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    I see you were treated for C. Pneumoniae. What were your titers before you started? Did you have breathing issues? I just tested positive for IGM titers, my IGG titers are pretty low.
     
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  19. chris160

    chris160

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    I have been helped by Valcyte, LDN, antibiotics, and IVIG, prescribed by Dr. Kaufman. He also diagnosed and treated my MCAS, found the cause of my POTS and has helped with those meds, and has done an excellent job with diagnostic testing, 95% of which was covered by insurance.

    Could you expand on "found the cause of my POTS". What did Dr. Kaufman determine was the cause of your POTS?
     
  20. Dallase1

    Dallase1

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    That’s great. I am considering LDN. How did it help you? Also, how did you get IVIG? Did you have low subclasses?
     
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