Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Lyme validity

Discussion in 'General ME/CFS Discussion' started by trickthefox, Nov 28, 2015.

  1. trickthefox

    trickthefox Senior Member

    Messages:
    212
    Likes:
    546
    Brighton
    It has been in the past few days that my KDM results came back with a strong positive for lyme through arminlabs. I thought this was good news as it meant i have a direction to go in with treatment, however the more I read on Phenix Rising, the more it seems that the validity of the test is questionable, which again sends me right back to a place of doubt, I really don't want to do something that makes me worse.

    Can people who have looked into this issue in depth help shed some light on this discussion? I am aware this is probably something that has been spoken about a lot

    There are definitely other factors which make me feel like lyme is a possibility with me. The last time I had remission (back in 2011) the month before I was drenched in night sweats, and occasionally would get these strange pin prick rashes popping up. I get the weird tingling pain in both soles of my feet, that occasionally feels like my bones are going to grow out my feet. I have blurry vision/visual snow. Low white blood cells (lymphocytes) The last two times i took systemic antibiotics my symptoms got 100 times better, followed by a week of intense itching which I've never had before, but then when i took rifaximin (a antibiotic that stays in the gut) nothing happened which put an end to the suspicion that it was the fact that the antibiotics were killing a pathogen in the gut that was making me feel better. I suspected dysbiosis and did Fecal Transplants which did nothing. Ive never seen a bullseye rash on me, but I did grow up in a family that went camping every summer, and id also spent a lot of time in the woods growing up. I don't have viral symptoms as such, just debilitating mental fogginess, fatigue, lymph nodes always swollen, massive food intollerences, and now developing strange psychosis like symptoms. I really want to trust that if I'm doing IV ABX in a country abroad that I'm taking the right course of action

    Would love to hear from some people who have either wrestled with the same predicament or know a bit more about this
     
    merylg and Marky90 like this.
  2. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    907
    I'm not sure about lyme. I follow Caudwell's progress on the treatment for his family as I feel he is probably getting the very best medical help. I imagine you have read about his families' struggles?

    When you first got ill wasn't it due to a vaccine? Were you ill before this point? Do you think the lyme could have made you more sensitive/vulnerable so that the vaccine triggered ME?

    Your symptoms certainly sound like they could be Lyme related although most of our symptoms fit with a plethora
    of conditions. You say that you are developing psychosis type symptoms; Caldwell's son has very severe psychosis. Are you, however, sure that it is not related to the LDN? Just wanted to throw that our there as other people have noted mental changes with LDN.

    Sorry I don't have any personal experience with Lyme treatment. I am yet to go down that route as I am put off by the very reasons you state (also the fact that it seems so difficult to treat).

    I'm sorry you are suffering and I hope you get a lot of encouraging posts.
     
    worldbackwards and Never Give Up like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,878
    Likes:
    8,178
    australia (brisbane)
    Like any treatment we try, we dont know its right until we try it. Also with lyme, cpn or myco theres also herx reactions that can indicate its an issue or we may feel alot better??

    If u have immune abnormalities like low white blood cells than any infection is possible . Also dont rule out having both viral and bacterial infections. If our immune system is abnormal than we may not show typical infectious symptoms.

    I think thats why most of us are a special breed here?? Treating us is a guessedamation.
     
    merylg, justy, maryb and 2 others like this.
  4. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    907
    Would a short course of oral antibiotics give TrickTheFox an idea if IV antibiotics are worth a shot?
     
    merylg likes this.
  5. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    @trickthefox - There are no great Lyme tests. The standard ones have a very high rate of false negatives, and some alternative ones have been shown in the past to have a high rate of false positives. But the bottom line is that there is little or no rigorous evaluation of either the standard or alternative tests.

    The lab which created and uses the Elispot-LTT has published a research paper showing it to have a pretty high rate of accuracy when using a score of 3 or higher as a positive result. But it has not been independently replicated, because no one is bothered enough to do it, even when they apply blanket criticism to the alternative tests.

    It does not show everyone to be positive. I know of several people on the forum who tested negative. Nothing about the research paper strikes me as being flawed or dishonest, so I don't see any reason to doubt their results. And the doubters are unwilling to put their money where there mouth is, so I don't find them at all convincing so far ... if they think the test is flawed and the research results are in error, then they need to prove it. But they don't even try.

    Lyme remains a largely clinical diagnosis, meaning that symptoms and history of exposure are important too, not just the Lyme test. There are also additional tests which can help to confirm the diagnosis, or suggest that it is not the appropriate diagnosis. So the Elispot-LTT is just one piece of the puzzle, and other pieces need to be put into place to get a look at the bigger picture.
     
    merylg, justy, Antares in NYC and 4 others like this.
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,227
    Likes:
    31,871
    I would suggest that if you are concerned that you have Lyme disease that you consult a trained Infectious Diseases physician locally in the South of England - someone with no financial interest in giving you a particular diagnosis. As far as I know Dr De Meirleir does not have an infectious disease background and as valentijn says, diagnosis of Lyme disease is more complex than just a test from a private lab.
     
    merylg, Bessie, Kati and 4 others like this.
  7. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    907
    Heapsreal,
    I have had many herx reactions (antifungals mostly) but never felt any better when the reactions abated :( We are most certainly a special lot!
     
    merylg and heapsreal like this.
  8. xrunner

    xrunner Senior Member

    Messages:
    843
    Likes:
    680
    Surrey
    Never had a bulls eye rash and I was never bitten by a tick. I'm pretty sure of this.
    When it was suggested I might have Lyme I tried to have a confirmation through other tests from different labs. A simple serological test came back saying past exposure to Bb. Then I had a blood microscopy test which said there were a few spiral shaped organisms in my blood.
    Eventually I trialled a course of oral antibiotics and later started to slowly recover. That was it for me.

    All the while, even when I was recovering under abx treatment all the infectious disease specialists I saw (four of them the ones I remember) would not support a Lyme diagnosis and of course the treatment. Their tests they said were negative. But I never saw them, so I don't know what they were actually showing.

    Is this medicine?
    You see a patient getting better month after month with a particular treatment, after certain tests point to a possible cause and there are some symptoms which would appear consistent with that cause, and then that specific treatment is actually working, and you still say that diagnosis is out of the question?
    Problem is very very very few are willing to stick their neck out (and I don't blame them) when it comes to a Lyme diagnosis.
    And it's not always a question of financial interests, as Dr Edwards suggests (though it might be in some cases) because with Lyme it's possible to recover through cheap oral antibiotics which is the way I treated it.

    Now whether Lyme is my only issue or there's other health issues (my illness started with an acute viral infection) that's still to be decided since I'm not completely recovered whilst the Lyme treatment stopped giving me gains about three years ago.
     
    merylg, Rlman, Antares in NYC and 8 others like this.
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,197
    Likes:
    4,390
    I would follow Prof. Edwards`s suggestion

    Best of luck man!
     
  10. trickthefox

    trickthefox Senior Member

    Messages:
    212
    Likes:
    546
    Brighton
    the thing is ive been down an infectious disease specialist route already in the UK, more than once, the only thing we test for here is antibodies, ive already had both an ELISA and Western Blott, both of which came back negetive, but ive heard this story time and time again from people who genuinley did have lymes disease and then got better after treatment, so its a head scratcher!!! Due to how sick I am the idea of waiting months to see an infectious disease specialist again to only be told that its all in my head doesnt fill me with much enthusiasm
     
    Joh, Theodore, merylg and 7 others like this.
  11. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,453
    You seem to be in the same dilemma you were in before you went to see KDM, i.e. you are not sure if the treatments he prescribes will make you better. As I said before, I think you just have to decide for yourself whether it´s worth the risk, and I don´t think people on here can do that for you, and in the case of Lyme testing, I don´t think they can even help you to estimate the risk yourself, apart from perhaps pointing out that none of the tests are infallible, as Valentjin did.

    I understand your reluctance to see another NHS ID doctor. KDM might not have an infectious diseases background, but he knows more about Yersinia than either of the NHS ID docs I saw,* so it´s possible that he would know more about Lyme too.

    * This isn´t difficult. I know more about Yersinia than either of the NHS ID docs I saw.
     
    Last edited: Nov 28, 2015
    merylg, justy, SOC and 6 others like this.
  12. trickthefox

    trickthefox Senior Member

    Messages:
    212
    Likes:
    546
    Brighton
    i'm scared :( as my only other option is wait and see how much worse it can get, obviously im going to get treatment, but im going to have to move mountains to somehow find a way to live in brussels for 3 months while i get IV, that i have no guarantee will work, possibly followed by oral ABX with my already damaged gut, and then theres people who make posts saying things like lyme is incurable. I cant live with this forever, i just cant do it any more.. how many times do i have to say that, and just keep going.. Someone please tell me they know people 100% cured from lyme who have followed KDMs protocolls. If this is just chasing another dragon I just want to stop it all now. This cycle of hope followed by despair or heart break gets so tiresome
     
    Last edited: Nov 28, 2015
    merylg and Marky90 like this.
  13. Mel9

    Mel9 Senior Member

    Messages:
    414
    Likes:
    976
    NSW Australia
     
  14. Mel9

    Mel9 Senior Member

    Messages:
    414
    Likes:
    976
    NSW Australia
    merylg likes this.
  15. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,197
    Likes:
    4,390
    Ren.. I have several friends who were sick with Lyme who got 100 % well with antibiotics, the hard part is finding out if thats actually it. As it`s been pointed out and as you are aware, that`s not too easy to tell. But my personal opinion would be; obtain a second opinion from a dr., who assess your clinical picture.. If that dr. finds your symptoms + history is consistent with lyme, i would go for AB. You have been suffering for a long time, It`s time to treat it. If It`s not lyme, then it could be ME, and treatment is coming along for that too. But most importantly: Dont fucking give up man, you got such the life to live when you get healthy and able to live with your music. It`s cheesy, but journey were right; dont`t stop believing <3
     
    merylg, Bessie, Apple and 4 others like this.
  16. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    Just because some moron says something on the internet doesn't make it true. I don't think any actual doctors ever make such a claim.
    I know of people who have improved substantially. Some are ME patients on this forum, or their family members, and others I've chatted with a bit in person at the clinic.

    My own experience is that my diagnosis of Lyme was accurate. My results were borderline (2 and under) on the Elispot-LTT, but I had a history of dozens of tick bites when I lived in the rural Southern US 20 years ago, and symptoms consistent with late-stage neurological Lyme.

    Once I started the IV antibiotics I began having a typical Jarisch-Herxheimer reaction with consistent fevers and hypotension at the same time every day. That specific reaction is only known to consider in reaction to treatments which kill spirochetal bacteria, such as Syphilis and Lyme, hence is a pretty good indication that there was such an infection.

    I have been on antibiotics for about 18 months, and my functionality has improved during that time, though it's only noticeable when I'm between courses of antibiotics. But other things have also improved - I have almost no pain now, unless I overuse my muscles. My tolerance of hot and cold have increased a lot. I've been losing weight (I needed to) without trying, and I don't feel hungrier than I should. Cognitive function improved shortly after starting the first IV antibiotic (rocephin) and has stayed improved, outside of my infrequent crashes.

    I don't think anyone can promise anyone will even be cured of anything, with Lyme, ME/CFS, or any other disease. There's no 100% certain answer, to treat or not to treat, or to treat in one manner or another. But improvement is certainly possible.
     
    merylg, Rlman, justy and 12 others like this.
  17. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    Then they probably weren't herx reactions, but rather poor reactions (ie side effects) from the medication. I'd guess that means you didn't have a fungal infection that needed treating, or that because of the side effects you couldn't take the medication long enough to clear the fungal infection. I don't know if that's encouraging or discouraging information. ;) From the discouraging POV, you may be one of those unfortunate PWME who react badly to almost all meds and have a hard time getting treatment as a consequence. From the encouraging POV, it might be that you don't have a fungal infection, but some other condition (pathogen or otherwise) that you just need to find the right medication for.

    We are indeed all unique and special. :) No one-size-fits-all treatments for us.
     
  18. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    907
    Maybe SOC,
    I had a blood test which was suggestive of chronic candida and I went on the diet for three years with long courses of nystatin etc.
    No change whatsoever, unless you count increased insomnia.
    I wish I wasn't unique or special.
     
    merylg and SOC like this.
  19. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    I think you're lucky to have stumbled onto a treatment that provides such relief. I'd strongly suggest chasing this one down.

    Which antibiotics did you use? It's worth noting some can have fairly strong anti-inflammatory effects, so this could be another explanation.

    I'd echo that IV antibiotics are not the only way to go. If you do have a bacterial infection and orals were that effective then they may be sufficient.

    If it were me I'd try to back up the clinical diagnosis and positive antibiotic trial with a western blot. Obviously use a local lab first, but if that doesn't come back positive you may want to consider Igenex. I think they do a better WB, using two strains. You can interpret the results liberally or conservatively from there, but I think that's the best way to get an idea about borrelia.

    Also, considering the night sweats, you might want to test for babesia species.

    I caught your videos a while back and was very impressed. You've real artistic touch.
     
    merylg likes this.
  20. trickthefox

    trickthefox Senior Member

    Messages:
    212
    Likes:
    546
    Brighton
    doxycycline the first time, tinidazole the second, both of which are known to have a large anti-lyme effect. I know that doxy is also anti-inflamatory, but i dont believe this was the case, as my positive benefits came after i stopped the doxy, and lasted for a bout a week afterwards, while i was on the doxy i felt like i weighed a tonne and slept the whole time. Ive done a western blott here in the uK, but it came back negetive

    Glad yo like the videos :)
     
    merylg likes this.

See more popular forum discussions.

Share This Page