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I am booked in to see Prof. de Meirleir in January

Discussion in 'ME/CFS Doctors' started by snowathlete, Nov 27, 2012.

  1. snowathlete

    snowathlete

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    So after a colonoscopy today it turns out I now have colitis (probably ulcerative, but waiting for biopsy results) as well as all my other fun diseases. *sigh*
  2. Firestormm

    Firestormm Senior Member

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    Sorry to hear that mate. Was it something DeM found or recommended you be tested for - or perhaps a result of the treatment? I know you have been going through the mincer lately.

    I hope they can calm things down for you. I really do. You deserve a break.
  3. snowathlete

    snowathlete

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    Thanks! I do agree with you - I deserve a break!

    At least I know now, and there are treatments, and of course this illness is recognised so the NHS can pay for this one, which is just as well as I'm told you have to treat/manage it for life (what is it with me and incurable diseases?)

    I guess I'll get my letter from the NHS offering me CBT to fix the colitis in the next few days!

    Not something DeM found. I only noticed symptoms a couple of months ago but interestingly I did email him to ask if I needed to change treatment and he said no, but he there and then prescribed me an anti-inflammatory bowel drug for it. I decided not to take it as it wasn't too long till the procedure but guess what - my gastro just prescribed me the same drug. So that's interesting. I'll see what KDM has anything to say on the results when I see him next month.
    SOC, Sushi, justy and 2 others like this.
  4. PDXhausted

    PDXhausted Senior Member

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    @snowathlete

    I'm so sorry for your UC diagnosis. Both my sisters and husband have Crohn's disease, and I have a cousin with UC, so I'm very sympathetic.

    I'm quite interested in your experience, because I'm facing possibly a similar road. I'm currently being tested for Lyme and my practitioner offered to start me on a low dose of doxycycline while I wait for results to see if it would help me. I was eager to try it but then remembered seeing something about the relationship between tetracyclines and IBD.

    I found this study:
    http://www.ncbi.nlm.nih.gov/pubmed/20700115/

    And given my family history, as well as my 23andme results, which show a 7x increased risk of Crohn's over the avg Joe, I hesitated. Then I remembered seeing your thread and thought I'd ask you a few questions.

    Were you on doxycycline prior to getting the UC symptoms? I'm curious if you have any family history of UC or if your 23andme results showed an elevated risk for Crohn's or UC?

    Also curious to know which antibiotic you switched to and how you're tolerating it?
  5. snowathlete

    snowathlete

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    Thanks PDX; it does sort of suck, though I saw the gastroenterologist a couple of days ago for my follow up. My biopsies do show it is UC not crohns, so that is good because Crohns is a bit worse out of the two, as you probably know. She was very reassuring though and said that with treatment and correct management the chance of me ever needing surgery are low and that my risk of colorectal cancer which is largely increased through having IBD, is also low so long as I take Mesalazine at a maintainence dose, basically for ever, as this stops growths from developing as well. The tablets are about THIS BIG and right now I am taking four a day. I am also on some enemas which are not much fun, and I already reacted to one brand with lots of additives, but the one I have now is better, but hopefully I will only need them for flares like I have now. She said that with the maintence doses many people do not ever have a flare again. So all sounds very good. Having said that, I have a friend who didnt respond to meds and had to have his colon removed. He is now 100% better - but of course, minus his colon!
    My Crohns risk, according to 23andme, is 0.56x and my mother had crohns. it says my UC risk was 1.15x. So interesting stuff.
    I did ask if she thought my antibiotics might have triggered it, but I can't remember what she said. My wife was with me so she will know - I'll try to report back on that. She did say about VSL3 being proven to help some people with UC so if I can afford them that would be the one to take while on abx. I told her about my late stage lyme disease and bartonella and she said "It's important you continue treating that until it's gone" > I was surprised to hear this, but I do think people are understanding this more. My chemist when I first saw him with an initial 8 weeks prescription said "This isnt going to be enough" and I had to reassure him it was just the start until I saw KDM again for review.

    A couple of points to note. I had "IBS" diagnosis four years ago and my gastro said that it was almost certainly UC back then. I've also passed a lot of mucus for a long time...I know, TMI, but I'm getting over my embaressment in order to hopefully help other people out there who might have the same early symptoms but who put them down to being ME/CFS when they probably are not. The earlier you treat the better with IBD it seems so well worth investigating as soon as you have symptoms.

    As my gastro said though, If you have Lyme, etc then really you need to go out sort it out even if you have these IBD risks. One option might be to take Mesalazine as a preventative medication while on treatment. My gasto said I can change the dose as much as I like within reason and take them forever and the meds wont do me any harm. So worth considering as you are more at risk than average. But I would get the Lyme treated if you have it.

    My abx treatment started with focus on Bart as that was what turned up positive first. Rifampin and clarithromycin which was later changed for Ketek (telithromycin). Not taken Doxy yet, though woudln't be against it still as a vet friend of mine told me that it is a very effective abx (even though its been around for years) in animals with intracellular infections. I will read that paper you linked though (maybe it will change my mind!). I have tollerated the meds ok though I have had a strong herx and felt worse throughout treatment. Only thing I can add to that is that I've also been suffering for at least some of that time with UC and so it may be that I am better from Lyme and Bart than I realize. I really do not know. I have a very bad cold right now as well, so feel AWFUL right now. But in 3-4 weeks time I may find I am a bit better....here is hoping.

    Hope that helps, but feel free to ask anything else and I'll answer if I can.
    Best
    Joel
    santi, Simon, Valentijn and 3 others like this.
  6. PDXhausted

    PDXhausted Senior Member

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    Joel- thanks for that excellent summary. And no worries-- mucus in the stool is like standard dinner conversation around our family.

    I LOL'ed at your description of the size of the mesalazine. Back when my sisters started it 15 years ago, they had to take 12 of those a day. Not fun. If its any consolation, my sisters and husband all tolerate the mesalazine well, and it does well to control my husband's Crohn's, which is mainly in his colon.

    It's good to know that you already had symptoms/mucus prior to starting the antibiotics. I thankfully have never had any symptoms or mucus, but I think I will always be a bit paranoid about potential triggers. And I don't even have my Lyme results yet, so I think I will wait on the doxy until I know what I'm dealing with. I may try a different antibiotic until then though, as I am struggling in other ways.

    That is quite interesting about the genetics. My husband had similar results as yours, and so I always find it a weird twist of fate that I have such a higher risk than him and he has no family history, and yet he's the one that ended up getting it.

    You may not need to worry about the doxy then since you already have UC, though you may want to be careful to see if you notice your symptoms flaring. I think that paper mainly implies a possible correlation to those who have been on a tetracycline and developed IBD. You didn't by chance take accutane or isotretinoin prior to your UC, did you? That is another one that is associated. It's great that all your doctors are on board with your treatment though. That is at least slightly reassuring.

    One other thing I was curious about- have you had any joint problems? I know those can occur in Lyme, but also can be associated with IBD. My husband has had alot of spinal problems and my cousin has ankylosing spondylitis, but my sisters have only had minor peripheral joint issues. Curious to know if you think you've had any issues and if perhaps they end up clearing up with antibiotics.

    So sorry you to hear you are feeling so miserable though :( I hope things turn around and you start feeling much better soon!
    aimossy likes this.
  7. Daffodil

    Daffodil Senior Member

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    snow...sorry to hear about the UC.
    kdm prescribed mesalazine for me, too
  8. Firestormm

    Firestormm Senior Member

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    @snowathlete sorry to hear about all this mate. I'd be interested in your wife's recollection re: antibiotic cause/trigger when you get the chance. But get some rest (bet you hate hearing that) and try to tune-out for a while.
  9. snowathlete

    snowathlete

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    I saw De Meirleir this last week at his clinic in Belgium.
    He thinks the colitis may be a resultof sulfides which in contact with air in the colon turns to H2SO4 (sulphuric acid) and damages the bowel lining. Interesting thought. He suggested I take bicarbonate of soda in between meals to lower ph. I'm going to give that a go.
    I asked to try LDN for the first time, as some UC patients report good results on it, as well as it being good for some with ME/CFS.
    I am back on Clarithromycin and feel worse after only a few days. This is the abx I was on when I started treatment and had a big decline. Is it more effective? Is it disagreeing with me? I really don't know yet.
    santi and Valentijn like this.
  10. lansbergen

    lansbergen Senior Member

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    Did you look for interactions?
  11. snowathlete

    snowathlete

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    With the clarithromycin? None that I know of. I tend to check everything I take for interactions with the drug.com interactions checker.
  12. Marianarchy

    Marianarchy

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    @snowathlete, at this visit you say you were tested for: liver enzymes, inflammation, NK-cells and cytokines. And I'm having the Infectolabs LTT test for Borrelia too.

    Do you mind sharing the cost of this round of testing?

    Thanks!
  13. Helen

    Helen Senior Member

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    Did you have a 23andme test and a Detox panel from www.GeneticGenie.org ? Maybe you have a "bad" polymorphism in the livers Phase I and/or Phase II system.

    In this sample from a gene test that the Detox panel is based on , you can see polymorphisms and comments that gives an idea of medications that can worsen detoxification. http://www.gdx.net/core/sample-reports/Detoxi-Genomics-Sample-Report.pdf . E.g. with an CYP3A4 polymorphism you can take Azithromycin but not Clarithromycin from the same group of abx. Just a thought.
  14. maryb

    maryb iherb code TAK122

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    @Helen
    can you explain how I find out more about this? I have the detox panel from GG but where will I find the comments about medications?
  15. Helen

    Helen Senior Member

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    Just use the link in my post (153) . There you can compare your polymorphisms with those in the sample and see the comments from Genovation. In Sweden we have an official site for medications with facts also about detox pathways and they correspond to the facts from Genovation.
  16. maryb

    maryb iherb code TAK122

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    @Helen
    thanks for that, I have to admit to not being able to understand any of it but I try to muddle through picking up what bits I can with help (a lot of help!!)
    I'm impressed by the fact that Sweden has an official site for this.
  17. santi

    santi

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    @snowathlete did you test for lymphocytes? Specifically for all subsets of them: B, T (CD4+, CD8+) and NK.

    If you checked for some of them, did you check also its activity and not only the quantity?
  18. snowathlete

    snowathlete

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    A few (quantity and I think maybe one on activity) but not a full test of lymphocytes (they are all posted in an earlier post in this thread if you want to see which ones).
  19. justy

    justy Senior Member

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    Hi Snowathelete, just wondering how you are doing these days. How is the UC? do you have it under control yet? are you still treating the Lyme etc. and seeing KDM?

    An update would be great - but so sad to read through your thread again and see how hard things have been for you. I hope they have improved somewhat!

    TC,
    Justy.
    WillowJ likes this.
  20. snowathlete

    snowathlete

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    Thanks Justy, yes, things have been pretty tough going,
    Things are better than they were a month or two ago though. About a month ago I decided to stop the abx treatment. I did this primarily because I had tried everything else to stop my weight loss and get my UC under control, and I felt the abx were probably contributing to the disease state. If I didn't stop losing weight I was going to have to have lots of tests to see what the cause was as my gastro didnt feel it was due to the UC. I also was at a point where I had been on the abx for ten months without improvement and although I know that Bartonella can take a long time to treat, without initial improvement, I felt like I should have had some sort of positive sign at that point, at least a feeling that treatment was working and improvement would come later - but I didn't really feel this.
    Having stopped the abx my weight loss stopped. In fact I have put on a couple of pounds. My bowel movements have improved and my colon feels less inflammed. I would not say that I am in remission yet, but I am going in the right direction slowly and I hope that a couple of months further on I will be there. I still have a couple of weeks of Prednisolone to take and so what happens after that will be important. I hope that I can get in remission without more drugs, but we'll see.
    I am actively working on improving my gut flora. My test from before my abx treatment started, showed a lot of dysbiosis, probably consistant with most people with ME/CFS. The abx will have made things worse. So I am working to improve things with diet, probiotics, fermented foods and prebiotics. I think it's all helping, though Its complex and I can probably only achieve so much.

    As I'm focused on my gut at the moment there may not be much I can do about the Lyme/Bartonella. I need to research what herbs that can be taken for it will do to gut flora, but as they are aimed mostly at killed the pathogenic bacteria (in the same way as abx are) my feeling is that they probably will also negatively effect gut flora. Fixing my gut flora may have some impact on my immune system of course, but I am not expecting that my immune system will suddenly be able to handle the Bartonella/Lyme.

    I'm going to be reluctant to go back on anything that will effect my gut flora really negatively, because I know it could make my UC so much worse again. Tricky situation. I guess I would do it if I felt there was a good chance that it would get rid of those infections, but that hasnt been my experience so far.
    I would point out at this point, that some people undoubtably do improve their health with abx to tackle Bartonella/Lyme. Just that others don't, there are no guarentees, and I, unfortunately, appear to be one of these others that don't improve.

    I was due to see KDM a couple of weeks ago, but I got a cold and on top of everything else it was too much, I coudln't make it and had to cancel. I've not been great since really, so haven't got around to sorting out what happens next. My intention is to phone this week and try to arrange a telephone consult. I don't know what KDM will be able to do to treat me given these limitations. I'm hoping he has something useful to say regarding improving my gut.
    merylg, WillowJ, justy and 2 others like this.

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