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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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My trip to see Professor De Meirleir (long post)

Discussion in 'ME/CFS Doctors' started by justy, May 17, 2014.

  1. RML

    RML Senior Member

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    Good Luck! I think it is good to have time to investigate and especially absorb the information before going. I spent days googling the different results, and there is such extensive testing done, you can't do it all in one go. Having some knowledge or even a starting point can greatly help get the best outta follow up appt. I had a long list of questions, didn't get to ask them all but maybe next time.
    justy likes this.
  2. Valentijn

    Valentijn Activity Level: 3

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    The ones we spoke to at the clinic in the process of IV therapy were very much improved. One had a whiplash/car accident ME onset, not sure about the others. One had gone from needing a wheelchair to being able to get around on her own and stand around for a while.
    justy likes this.
  3. RML

    RML Senior Member

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    One of the things I noticed on my first visit, while myself feeling like I was half dead, was the comparison between those in waiting room, and those in IV room. Like myself, the other patients looked worse for wear, many worse than me, some painfully thin and wasted looking.
    I noticed that those walking around with Iv's had a kinda 'bounce' or spring in their step, unlike me that I dragged along dreary barely lifting foot off ground as I walk. I know that is a bit of a sweeping statement, and not all on IV's were doing great, I'm sure some were v sick new to it in nurses room. But I really couldn't keep my eyes off these 'lively' guys with IV's , looking at them with awe almost! .... and hope started to creep back into me.

    The girl I talked to on second visit said he turned her life around, from stuck in bed not walking well, to back working. I didn't think to ask what stage her treatment she was at, but there are good results coming from this.
    Clodomir, Sushi, ukxmrv and 3 others like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    I felt the same way on my first visits. At first I wasn't even sure they were ME patients! There I was sitting on the floor in the waiting room while they were walking briskly in and out of the IV lounge like normal people :rofl:
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Same here! Those poor IV patients must get PEM just from being interviewed by new patients so frequently :eek:. Everyone I talked said that they were either improving slowly or were already much improved.

    Sushi
    xchocoholic, justy and Valentijn like this.
  6. Leachim

    Leachim

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    To be able to win the fight against borrelia and the other infections you need to get the immune system functional enough to be able to control them. There are certain immune weaknesses and disturbances that are specific to the type of chronic infections seen in ME which needs to be treated. The antibiotics (and herbal treatments) can help with combatting the infection, bringing it down in numbers or making it less active, but you need to get the immune system functional enough to get the 'upper edge', otherwise the problem isn't solved even if the amount of bacteria is reduced.
    rosie26, justy and maryb like this.
  7. golden

    golden Senior Member

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    @justy,

    Thanks very much for creating this thread and allowing me also to further my knowledge. You are a uk pioneering patient :)

    I cant help with the results but I thought one could disregard the TSH level as T4 and T3 are more accurate???

    So, in my case my TSH was 7 BUT my T4 and T3 were in the borderline low normal reference range (of Dr.Myhill scale which is far narrower anyway...) EDIT: i think i mean far WIDER....i cant work it out in my brain jyst now.
    Last edited: Jun 29, 2014
    justy likes this.
  8. maryb

    maryb iherb code TAK122

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    @Leachim
    So how would one get the immune system functioning enough before starting on killing the bacteria?

    I've just been diagnosed with Lyme but honestly feel I'm not strong enough to take a/biotics IV or oral at present.

    My eyes are badly affected and I can't read much, hence I have to ask questions, which on the face of it make it look like I'm lazy and not prepared to do the work myself. People have pointed me towards books, I haven't been able to read a book since becoming ill. I now know the Lyme bacteria likes the eye and facial area/nerves, so looking forward to the day when I defeat them and can read again without feeling so sick. Hopefully goodbye Bells' Palsy too.
    Daffodil, Sushi, Hanna and 2 others like this.
  9. Sasha

    Sasha Fine, thank you

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    Very interesting thread, @justy!

    I'm a bit brainfogged at the moment and having trouble reading, so sorry if this has already been answered, but what is the purpose of the bike test? I know it has research uses but I'm wondering what it could show in an individual patient that would lead to treatment.

    Also, do you know what pre/probiotics KDM uses if a gut problem shows up?
  10. justy

    justy Senior Member

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    Hi Sasha - I don't really know what the bike test is for other than proof of disability - I did it because I want to give KDM as much info as possible for him to look at and then decide what to do with me. I gather he is a data man and likes to see all the results and is very good at interpreting what it all means.

    I think he has prescribed VSL for others - I haven't had my treatment plan yet- am having my follow up call on Friday morning as long as I am well enough to - still suffering with the asthma and have had to go back on the steroids even though I was having nasty side effects, so who knows if I will even be capable of speaking to him!

    My stool results showed Dysbiosis due to lack of variability - many bacteria entirely missing - and ive just taken another course of antibiotics so expect that will be worse now.

    All the best,
    Justy x
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  11. Sasha

    Sasha Fine, thank you

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    Thanks, @justy - and sorry to hear about your asthma. Hope you're able to speak to him on Friday!

    That's interesting about the VSL - I hadn't heard of that one before. I'll post about it on the resistant starch thread (so as not to derail this one). Interesting also that you've got a whole load of bacteria missing.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He prescribes VSL-3 to some, mutaflor to others, and other probiotics to yet others--depends on what shows up in your gut test. I take VSL-3 = 450 billion critters!

    Sushi
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  13. justy

    justy Senior Member

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    quick update:

    Had my follow up phone consult with KDM on Friday.
    He said that I had Borrelia (Lyme), Bartonella and Chlamydia Pneumoniae.

    My immune system is totally out of whack - he sees some parts very over active and I have autoimmune antibodies - he say this is common in patients with Cpn. Other aspects (TH1?) very depressed. He says my immune system is very poor and it is no wonder I have viruses and infections that I cant clear.

    I was very lucky to speak to him on that day as I have been very ill with chest/lung recurrances. I told him about this and he was very concerned that I needed antibiotics to target the Cpn that day - he said the steroids would not make me better only azithromycin was needed. I was also fortunate to see a good out of hours GP that evening who was happy to prescribe the nearest thing - Doxycyline- that he had (it is specifically for treating Cpn) and I am now beginning to slowly recover - so I am already very grateful for KDM's extensive knowledge.

    He also wanted me off the steroids as quickly as possible - I have been on them for 7 days now and will be doing a fast taper over this week. he said it would fuel the Lyme and that was not good.

    He also mentioned very high brain inflammation - this was the crux of the Lyme dx I think, as in fact my tests for this were mainly negative. He said that some of my immune issues and inflammatory issues would not be explained by the Cpn or Bartonella - especially the brain inflammation.

    He said I had some very high cytokine levels that would be making me feel very sick, and when I questioned him about exercise testing he said I had the capabilities of an 85 year old - charming! - but sadly true.

    I did question the Lyme dx - I thought the test results ruled it out, but he said he could see the footprint of the disease all over my results.

    He noted the iron deficiency anaemia and vi D3 deficiency and said to start supplementing with these - I was concerned the iron would fuel the bacteria but he said not in the case of the ones I have.

    I asked him about treatment and recovery and he was quite vague - he said we where currently trying to fly a plane in high winds and needed to try and keep it straight on course, rather than veering all over the place. Then he said that there would be various treatments aimed at keeping it all going correctly. He also said that I shouldn't expect to see ANY improvements from treatment for at least 6 months to 1 year. He explained that this was because my immune system was so poor it needed to create a whole new set of B cells - post treatment (or I guess during) that could come back healthy from the bone marrow. Until then he expected it would be slow going and I could expect to continue to feel ill and get infections etc.

    It was hard to take it in as I was the most ill I have ever been last Friday and nearly cancelled the apt - so glad I dint now as he has me on the right track with the CPN - already a couple of NHS GP's have taken an interest in this with my current situation and I feel confident to demand further targeted antibiotic treatment if my chest condition deteriorates once these abx are stopped. Reading up on CP today I see the literature says it is very common in certain people for it to reactivate and for longer term therapy to be needed to get rid of chronic infections.

    Considering the wealth of evidence about Cpn and it role in illnesses - especially asthma and recurring chest infections - I cant believe that I have never been tested for it by the NHS - I had years and years of recurring chest and lung and pneumonia and pleurisy infections and now my lung is vulnerable to further damage as I have fibrosis in one and yet they never did a simple blood test to look for it, all I would have needed would have been a few weeks to months of 2-4 antibitoics and I may have been cured of my lifelong asthma.

    Rant over.
    Justy
  14. Sasha

    Sasha Fine, thank you

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    Wow - thanks for posting, Justy. I'm sorry you've been feeling so very ill but it's great that you've now got a clear diagnosis (well, several!) to target.
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  15. RML

    RML Senior Member

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    Hi justy, glad you got some answers finally, and lucky you got some good advice for your current problems.

    Do you have Lyme dx then?

    What is TH1 test for ?

    what stage did you get on exercise test to be 85 haha - I was stage 4 , just to compare! Maybe I'm older!
  16. Hanna

    Hanna Senior Member

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    Justy, glad you can now begin to make the plane go in the right direction; though it will be a long distance flight, the captain in one of the bests, so hold on!
    Sushi and justy like this.
  17. justy

    justy Senior Member

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    Yes I have Lyme DX

    Not sure about the TH1 TH2 imbalance issues or where the tests for this are. He didn't give me a stage, just said 85!
  18. RML

    RML Senior Member

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    But is Th1 Th2 are they thyroid tests? or something else? it was something I was thinking of getting done but that first day in clinic I was half brain dead, just a zombie going through the motions, so didn't mention it. Still curious if I might need to get thyroid issues checked, perhaps he thinks not for me.

    Anyway, enough about me, at least now for you have a direction or focus to start towards, and no longer waiting.
  19. Tammy

    Tammy Senior Member

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    Hi Justy..... is CPn something you can have for a long time? You have had lung infections going on it sounds like for awhile.
  20. Clodomir

    Clodomir In hibernation mood

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    Hi Justy,

    I did he test twice. First time I was negative, then KDM took more blood (bigger sample) and I was positive.

    My husband was positive to borrelia and now after oral ABX and buhner's protocol, it seems that he is also positive with bartonella...

    The result may be not definitive... sorry

    Have a nice day

    Clodomir
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