The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Recent KDM appointment

Discussion in 'General Treatment' started by Daffodil, Mar 16, 2015.

  1. Daffodil

    Daffodil Senior Member

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    hi all. i went to belgium and on march 3rd, saw KDM for the 4th time. i also went to buy immunoglobulin for subQ infusion. i also purchased arcoxia, which is the anti inflammatory KDM likes to use.

    the appointment itself went OK. he is VERY busy at the belgium clinic so i went through my list of questions quickly and he provided short answers.

    i told him i had had some feeling of initial improvements with the ceftin+clarithromycin combo but it did not last. i also told him 2 months into this regimen, i had 10 days of 60% less brain fog, which felt like a miracle (the fog came back after this).

    i asked if i could take antibiotics and digestive enzymes at the same time. he said yes.

    i asked what he thought about fecal transplants. he didnt disparage them but also didnt recommend them for me. i think his team is doing a lot of research in the area of gut microbes/CFS/lyme and when things are unpublished, it is difficult to get too much info.

    he said he had 2 patients who had fecal transplant due to C Diff infections and did improve for a while.

    now that my 1,25-dehydroxyvitamin D has normalized, i asked if i could take vit D supplements since my 25-hydroxyvitamin D is a little low. he said yes.

    i asked if he thought IV Vitamin C might help me. he said it doesn't stay in the system very long. i took that to mean that i shouldn't bother with it.

    i asked about my perpetually high CD8. on the last visit, he told me this viral. i asked if we should address this, since the last EBV test was negative. in response, he ordered CMV and HHV6 (i think) testing (i have been getting these antibody tests for almost 10 years and they have never really indicated much).

    i asked about enterovirus but i cannot remember what he said lol sorry

    i asked about the nystatin nasal spray that i heard dr. brewer is using and i don't think he knew about it.

    i told him that despite my sticking to the diet pretty well, i have not been able to give up tea with milk even after 2 yrs of trying. he said as long as my general diet is healthy, it is OK.

    i asked if i could try the supplement zinc-carnosine (it is supposed to help leaky gut from my readings). he said yes.

    i asked...if the disease is being caused by intracellular bacteria, why does this bacteria not show up on next generation sequencing of tissue (which his team did)? he said the sequencing was not deep enough.

    i said that i did not feel that the tasectan was doing anything in preventing antibiotic-related diarrhea and he said i could stop taking it.

    i asked, given the extent of my illness (over 21 years) and age (44), what my prognosis is. he said that long term, the prognosis is good.

    -----

    while i was in belgium, i asked to get IVIG. i believe i got 10 grams, which i was told would last 1 month.

    the trip proved to be hellish, with a lot of logistical problems surrounding the immunoglobulin i went to purchase. there was a lot of crying and even an emergency wheelchair at the airport!. a lot of pastry-eating too lol...i expected to be in bed about 2 weeks after i got back, but thanks to the IVIG, i was out to buy groceries 2 days after my return!

    the IVIG seems to have helped my energy levels but strangely, has made my brain fog and lymph node aching worse.

    -----

    KDM told me to continue on the same antibiotics. since i had been on them for 4 months already, and knowing that KDM changes the regimen every few months to avoid gut flora problems, i double-checked to see if this wasn't an oversight; it wasn't. i assume this has something to do with my telling him i had the 10-day period with much less brain fog.
     
    Last edited: Mar 16, 2015
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    That's interesting that the IVIG made your brain dog worse.

    I just saw an immunolgist who wants me to get it and wants to use a cognitive assessment as a barometer for how well it's working since fog is up there with my worst symptoms. I disagree since we don't know what causes my fog and Id rather have more energy

    Glad things are helping you.

    Edit. *fog. I'm gonna blame that on autocorrect
     
    Last edited: Mar 17, 2015
  3. Sushi

    Sushi Senior Member Albuquerque

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    Lordy! Maybe we need to send those dogs to obedience training!
     
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  4. justy

    justy Donate Advocate Demonstrate

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    Hey Daff - thanks for the update. Just wondering how long they did the IVIG infusion over? is 10g a little dose or a lot? any benadryl or steroid before it or just the IVIG? Im going in two weeks and don't really have a list of questions - I hope he is going to be communicative when I am there!

    Looks like you had a fairly good apt - I don't want to have to do all the work though - im so ill I just want a Dr who knows that they are doing to take charge.
     
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  5. shannah

    shannah Senior Member

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    Gosh Daff - you're really seeing the world these days aren't you? Flying from one side to the other. Too bad all that travel wasn't for purely pleasurable reasons.

    Good to hear your report. Thanks for posting.
     
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  6. Folk

    Folk Senior Member

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    That's one thing that bothers me.

    A lot of things you had to bring up yourself... Otherwise he wouldn't do nothing about it?

    That's not how that's supposed to go...

    With my doctor is the same (only ten times worse). I ask "what about lyme" and he "oh yes yes we can test for that."
    and then "did you see my vitamin D was really low?" "ahh yes, almost forgot, take this"... :\
     
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  7. Daffodil

    Daffodil Senior Member

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    hi Justy. the part with KDM went OK....the IVIG was given over and hour, I believe. 10 mg is still a small dose. Usually, IVIG is given at 25 g per month or more.

    I did not get any benedryl or anything before the IVIG.
     
    Last edited: Mar 16, 2015
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  8. Daffodil

    Daffodil Senior Member

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    Folk....with a doc as busy as KDM, it will never be an ideal situation, but one has to make it work.

    Shannah...yes...if you told me 25 yrs ago that I would be finally traveling to Europe, I sure didn't think it would be like this!

    I asked other important questions but am afraid to say that I do not remember the answers. I was too mindful of the time and nervous so I didn't write most of the stuff down. Also, I was nervous and foggy.

    I asked about my low mucosal IgA and if immunoglobulin would help that. I get the feeling he said no but I cannot be sure. I think he said about 20% of the population has this and it is a congenital defect.
     
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  9. Folk

    Folk Senior Member

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    Yeah, but that makes me feel like they see us as statistics :\
     
  10. Sushi

    Sushi Senior Member Albuquerque

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    Can't say about the others in the "they," but KDM definitely sees us a individual patients, not statistics. He remembers us and our individual situations which is quite incredible given the number of patients he has. And, in the States where he is less busy, he spends a lot of time with us and it is a satisfying personal interaction dynamic.

    Sushi
     
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  11. Daffodil

    Daffodil Senior Member

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    Yes, if you see him only in Reno, it would probably be somewhat different. I saw him there once and he is definitely more relaxed and spends more time with you.
     
  12. Folk

    Folk Senior Member

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    Okay, sorry for diverting the thread!

    Btw, how's your herxing by now?
     
  13. Daffodil

    Daffodil Senior Member

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    hi folk. well, I think the IVIG could be causing herxing because the inflammation is very bad right now. otherwise, I never can be sure, day to day, what is going on.

    all I can say is that I am better than before I began antibiotics, but am not even sure by how much.
     
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  14. xrunner

    xrunner Senior Member

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    That's a lot of questions! With my doctors instead I was never able to ask more than two perhaps three questions in the context of a consultation.
    Hope the new treatment works well for you. Best wishes.
     
  15. Daffodil

    Daffodil Senior Member

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    Thanks, xrunner.

    I start out the appointment with, "i will go through my questions very quickly." and start talking before they can stop me. there is nothing relaxed about my approach.

    I collect questions over the course of about a month before the appointment, because I am much too foggy to come up with them all at once. I use a personal voice recorder that I keep near me at all times so when I think of one, I quickly record it before I forget (which is in 4 seconds).
     
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  16. Daffodil

    Daffodil Senior Member

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    well I am kind of angry. I spent a lot of money on antibody tests, not realizing they would not be accurate due to the immunoglobulin I took..and no one told me about this. more money down the drain that I cannot afford.
     
  17. Daffodil

    Daffodil Senior Member

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    just wanted to say that i have been experiencing more energy the last few days but no siginificant improvement in brain fog.

    i havent really done much more work than usual but i have not been having to force myself to do things as much and have felt better while doing them.

    i have also had the urge to do pilates a few times but i know i am nowhere near ready for that. i did manage to stretch for a minute or 2 without experiencing chest pain. this is new for me.

    i think it must be the 10 g of IVIG i got in belgium.
     
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  18. xks201

    xks201 Senior Member

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    Has this guy even cured anyone or made anyone significantly better lol? I see all these stories of people seeing him and no one gets better just fancy responses
     
  19. Sushi

    Sushi Senior Member Albuquerque

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    I don't think any docs are getting cures in patients who have been sick for quite a while. This doc does get people better--I am one and I know of others.

    Sushi
     
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  20. Valentijn

    Valentijn Senior Member

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    Yes. Several here, and I've also chatted with more at his clinic. I don't believe he promises a cure.
     

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