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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. Gingergrrl

    Gingergrrl Senior Member

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    I really am not sure of the specifics and both were very complex cases with many different factors. I believe the first friend I mentioned treated the Babesia first (but I could be wrong about that) and for sure is getting IVIG to try to build up her immune system. The second friend has a very complex case with some additional doctors involved but will soon have surgery for an EDS related problem.
     
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  2. ivorin

    ivorin Senior Member

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    Hi, I really think that a story as similar as mine, there is no better option than Dr. Kaufman, he seems to follow where the tests point and really does try to address as much as he can.

    The costs are $650 first appointment (less for the following ones). $2000-$8000 for the tests. From next to nothing to several thousand for treatment, depending on what you need. If it's stuff like IVIG, then you'd actually have to find a way to get it back home from your insurance because it's impossibly expensive.

    I really hope you can make it here and get help. I am keeping my fingers crossed for you :)
     
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  3. ivorin

    ivorin Senior Member

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    Today's update:

    I am positive on the Cunningham panel, the Celltrend panel and for Small Fibre Neuropathy (biopsy). Dr. Kaufman thinks my best chances are with IVIG and/or RTX. As we can't afford IVIG we will be going for Rituximab, starting in a few weeks. I am very scared of it but I have no life and I have very little to lose now - this at least gives me a chance.

    The other things we will be adding are Celebrex and LDN, which should help with immune modulation and easing inflammation while we start the Rituximab. The MCAS labs, as I expected, are showing up negative for now, but we will keep with the meds for a while just to be sure.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I replied in your other thread and just saw this one. How many autoantibodies and which ones were you positive for on Cell Trend? Also, what does the small fibre neuropathy biopsy involve and how did Dr. K determine it was positive? I have never done that test?

    I literally had no side effects from Ritux, and I have MCAS. IVIG is much harder to tolerate just in case that reassures you. On the flip side, Dr. K believes I responded so quickly to the Ritux b/c I had already done a full year of IVIG first so my autoantibodies were already lower before the B cells were wiped out.

    Interesting! I am allergic to NSAIDS and cannot take Celebrex and I did not tolerate LDN (when I tried it in early 2014 from a naturopath before I had ever met Dr. K).

    My tests were positive in 2014 and 2015 (histamine 4x the normal limit, prostaglandins very high, etc) BUT you can have normal tests and go by clinical symptoms. If you have normal tests AND no symptoms of MCAS, I would assume he will later rule this out. Which meds are you trying? Ketotefin and an H1 and H2 blocker?
     
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  5. Silence

    Silence

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    I was able to get an appointment with Dr. K and I liked his approach and openess. I mentioned how I found out about him through phoenix rising and he smirked and laughed. He said he has to keep his guard up with the people on phoenix rising because they come prepared..lol. I assured him that most of the things said about him were positive things. And he said, "phew, good to know!" I had a similar experience. I came back positive for 4 antibodies on the cunningham panel. and waiting on other testing. I wonder how reliable the cunningham testing is compared with controls? He also wants me to do a small fiber neuropathy test since I have some neuropathy/myopathy symptoms. I am starting a cocktail of otc mcas drugs to see if it helps any of my symptoms also.

    I spoke with one of my neurologist at my local university hospital and they use a machine called a sudoscan where you can just put your hands and feet on a machine for 5-10 miniutes and it can tell you if you have small fiber neuropathy along with autonomic neuropathy it doesn't hurt at all. It has a 75% sensitivity and around 95 0r 98% sensitivity> sounds much better than getting s punch biopsy.

    Did you test postive for any infections @ivorin ? I've used LDN also and was helped a lot by it for a while. For a subset of people the intial start up symptoms can be a lot to deal with so I would caution to go slow and adjust the dosage as needed, but it really helped with my brain inflammation. Good luck with your ongoing treatments.
     
    Last edited: Dec 26, 2017
  6. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and that comment made me laugh and I can see him saying that! Best wishes with your treatment. What are your symptoms of neuropathy/myopathy?
     
  7. Joh

    Joh Inactivist

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    @ivorin, you're living my dream! :) So happy for you, that you actually made it to Dr. K. for some real treatment and testing. :nerd: I'm highly interested in every detail and very grateful if you'd like to keep us informed!! :thumbsup:
    Arguing with myself if I should do the same. I've never had the chance to try any treatment in 15 years, not even LDN or sleep or pain meds. I'm just so afraid of the costs. No only the appointment and testing, but the costs for the flights, most of all the costs to stay there for a month or longer (let alone the treatments). I could afford some of it from my last savings but then they would be gone and my monthly retirement payment is 85 Euro. :rolleyes: Such a hard decision to make. If I knew it would make me better and able to work again I'd gladly spend all my last savings. But if I can't work again, I need them.
    Anyways, all the best to you! So exciting. :hug:
     
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  8. Forçe e Honra

    Forçe e Honra Senior Member

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    Hello,

    I can tell you that I just got a bill from the lab that lists my first set of lab tests Dr. K ordered were over $6,000. What is interesting is that my insurance of course has a lowered negotiated price of around $900. I have health insurance coverage through my spouse's employer and through Medicare (for those permanently disabled). There was one test that no my insurance would not cover, which I was told about up front (at the lab) and it was around $120. I was sent a bill from the lab for $200 as my co pay, but they'd failed to bill my secondary insurance so I should owe very little or nothing. I had 24 tubes of blood taken, btw.

    For me, blood tests are pretty regular, I've had 3 sets starting at the end of July this year. Starting a new medication in January (hopefully insurance approves), I will have some tests every 2 weeks for a while.

    I forget how much my first office visit was, but I think around $580? And my follow ups have all been about that much. But for instance, he probably spent 3 hours with me on my first visit. He is so thorough. And he responds to emails (sometimes quickly, sometimes not quickly, which is understandable).

    That was just my experience, I am not sure how helpful it is.
     
  9. Forçe e Honra

    Forçe e Honra Senior Member

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    If anyone who has gotten the Celltrend is in Northern CA and would be open to messaging me where they got it done and how much it cost, I would appreciate it! It is one that Dr. K wants me to do and since my MCAS is giving me so much trouble it sounds like it would be a good one.
     
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  10. ivorin

    ivorin Senior Member

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    @Gingergrrl The biopsy involves two punched holes of skin they check for small fibre neuropathy. It's done under anaesthetics so it doesn't hurt at all.

    I only had alpha-1 andrenergic and muscarinic 4 positive with a few more borderline. My Cunningham panel was much more indicative, which makes sense, as I have a lot of neuropsychiatric symptoms.

    For MCAS I'm trying three h1/2 blockers and Neuroprotek. Dr K says if we get positive labs we might add something stronger.

    @Silence Have you considered RTX or IVIG? Given your Cunningham results I would have expected Dr. K to want to pursue them. I haven't started LDN yet, will in a few days, I really do need some relief for my brain issues. I only have SIBO and IGG's for almost all of the herpes viruses. For me it all started after a primary herpes simplex infection that Dr. K hypothesises jumpstarted an autoimmune reaction.

    @Joh I really hope you get the chance to try to get help. I believe it is worth it to get relief as Dr. Kaufman understands a lot of nuances with what can be solved with which drugs, even if a lot of it is just symptom relief. My next step is either waiting a while to see what happens under the drugs I have already been given or starting RTX. I am scared of RTX because of a lot of cautionary tales you hear about what CAN happen, especially with what happened to Olaf Bodden. On the other hand, it could give me my life back, I am very much on the fence. I don't know what I will do.

    Perhaps you could contact Dr. Kaufman with your illness summary and ask if he could perhaps offer consultations by Skype as he does this for follow-up appointments. Maybe he would consider this for a case like yours? Fingers crossed.
     
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  11. jeff_w

    jeff_w Senior Member

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    Hi @ivorin -

    I've been seeing Dr. Kaufman since 2014. He's helped me immensely. I'm glad you've made this long journey to see him. I believe it will be worth it for you.

    I know Dr. Kaufman has already found evidence of autoimmunity from your Cunningham Panel results.

    You wrote something about your downward spiral that really stood out to me, and I'm wondering if part (or more) of your disease is the same as mine.

    I had very similar symptoms, with chronic headaches at the back of my skull, worse POTS, sensory overload, and severe mood swings. All of this came on in March of this year. I didn't have electroshocks, but I know others with my condition who do.

    Anyway, in May of this year, my neurological symptoms that you're describing became so severe, that Dr. Kaufman ordered an upright, flexion-extension MRI. I had come to suspect that I had craniocervical instability, and Dr. Kaufman ordered that very specific MRI for that purpose. I know you've had regular MRIs in the past. But, regular MRIs will not catch craniocervical instability. The MRI has to be upright with flexion-extension.

    So, Dr. Kaufman ordered the appropriate test for this condition. Sure enough, my MRI revealed that I had this.

    I was hospitalized for this, and I will need surgery to correct it. Dr. Kaufman supported me during my long hospitalization. He advocated for me when hospital doctors were missing important information.

    Also: Craniocervical instability can cause mast cell disease, as our nervous system and immune system are intertwined. It seems feasible to me that autoimmunity could be related to craniocervical instability as well, although this is conjecture on my part.

    You could perhaps bring this possibility up with him, via email, if he hasn't already discussed it with you (and I assume he hasn't, because you probably would have written about it here). A lot of people with craniocervical instability have something called a Chiari Malformation, which the upright MRI will catch as well.

    Yep. That's why it would be good to test for craniocervical instability, even if just to rule it out.

    It sounds like he's already figured out a lot of things. Good luck with all of this. I look forward to reading your updates.
     
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  12. ivorin

    ivorin Senior Member

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    @jeff_w Thank you so much for this, it is immensely helpful because I've had a lot of issues found in my cervical spine already by x-ray and this would fit the bill, especially since I did a lot of extreme sports when I was healthy. I will raise this up with him asap! I am much obliged, happy holidays to you! :)
     
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  13. jeff_w

    jeff_w Senior Member

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    You bet! When Dr. Kaufman wrote my MRI order, he said it was not common to order an upright flexion-extension MRI. So it might be a good idea to double check that your order is for that exact type of MRI.

    Any other type of MRI or X-ray will miss the problem if you have CCI.
     
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  14. jeff_w

    jeff_w Senior Member

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    @ivorin -

    Once Dr. Kaufman gives you the order, you'll have to find an upright MRI facility. Not all hospitals have them, but there are many upright MRI facilities near you, in Northern California. I went to one in Hayward.

    After your MRI, you should ask the MRI facility for 3 or 4 copies of your CD results. You'll need to mail these CDs to one of three neurosurgeons: Dr. Bolognese (New York, USA), Dr. Henderson (Maryland, USA), or Dr. Gilete (Barcelona, Spain). Just know that the radiology report will not find craniocervical instability, they nearly always miss it because they aren't checking for it, and they miss a Chiari Malformation, as well.

    I'm seeing Dr. Bolognese January 31st for surgery to fix this problem. I'll be getting a craniocervical fusion (C0-C1).
     
    Last edited: Jan 15, 2018
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  15. Rlman

    Rlman Senior Member

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    it's so great to see you posting @jeff_w, as i was wondering how you were doing. As you had a great thread on Dr. Kaufman a few years ago but then seemed to have disappeared from PR. I wish you all the best with the surgery! When i read @ivorin saying that he had headaches at back of skull i also wondered if cranial settling / Chiari could be a factor as i had researched that in the past and i thought i recalled reading that many patients had the same symptom. Thanks for letting everyone here know about that! Best Wishes for a successful surgery and a return to vibrant health!!!
     
    Last edited: Dec 28, 2017
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  16. Silence

    Silence

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    Thanks. I have stiffness, achyness, burning, weakness, twitching, stiffness in my distal limbs/muscles and muscle atrophy. If I do more activity these symptoms get worse. My needle emg were abnormal along with ck and aldolase and my differential consists of a few rare diseases/muscle dystrophies that have yet to be ruled out. Whole exome sequencing has pointed to a gene variant of unknown significance. my geneticist says its a possibilty that this gene is pathogenic since my twin has the same one with the same symptoms, might need to get a muscle biopsy.

    Dr. Kaufman has mentioned IVIG and RTX but I haven't received all of my results yet, so I am just waiting for a follow up appointment.
     
  17. pibee

    pibee Senior Member

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    I heard from many other autoimmune/CNS patients ( MS) about same onset, "electricity through back of the spine and neck and then felt colapse and the disease has started", maybe it's just a sign of breaking of BBB and penetration of autoantibodies to CNS.
     
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  18. maybe some day

    maybe some day Senior Member

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    Been following this topic. So glad you may all start feeling better. This isnt an illness to have a HMO care, like me. I cant fathom 6k. Not only are we sick, but cant afford a chance to feel better. Congrats for all of you though in sustained better health.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @ivorin Now you are getting feedback from two of the best... Dr. K and @jeff_w... ;). I'm very curious now if EDS plays a role in your case and please keep us posted.
     
  20. Rlman

    Rlman Senior Member

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    @jeff_w if cranial settling and often Chiari are only seen on upright MRIs does that mean people with those conditions only have symptoms when erect? and when lying down no symptoms as brain stem not being constricted?
     

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