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In the end it was Lyme

Discussion in 'General ME/CFS Discussion' started by Allyb510, Apr 19, 2017.

  1. Allyb510

    Allyb510 Senior Member

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    So it seems it was Lyme, in the end.

    APRIL 2017

    This is an account of my 2nd visit to the doctor for my test results. But first, I’ll tell you a story. Feel free to skip ahead to the business end of this post.

    We had a massive puncture on the motorway when we were 15 minutes away from our destination. This was really unfortunate as we’d left home 34 hours earlier from the north of Scotland and just wanted to reach our Airbnb and collapse with a cup of tea (if only something alcoholic). Now, our continental cousins love to drive as fast and aggressively as possible, bless them. There isn’t much of a hard shoulder on this road to move the car to and there’s a very real possibility of being mowed down by an articulated lorry if you stay with your car. We contacted our breakdown assistance and then clambered up through a nettle-filled ditch to reach a stony embankment where we waited for 2.5 hours.

    The giant breakdown vehicle eventually came. You never realise how high the cabs on these things actually are but, as a petite person, I had a hell of a time getting in. Still, there was no option. We jolted around in this truck, trying to find a tyre that fit our car (didn’t), until finally at 1:30 in the morning we were noisily deposited at our b & b in a sleepy, elegant suburb. Our host was a gem and waited up for us but I’m sure the neighbours were livid. I don’t know how we managed to get there; the driver didn’t speak our language at all and we didn’t speak his very well, but somehow we managed to communicate.

    APPOINTMENT

    My test results have shown that the disease started with Lyme many years ago. There were co-infections. There was a cascade of inflammation, hyper permeability of the gut, effects of LPS on the brain, and other things I can’t remember. My activity markers are quite low, but he believes some therapy is still needed to keep them that way. It is likely that late stage Lyme cannot be completely eradicated but rather controlled by the immune system.

    I have CVD and issues with conduction. Much pain. Autoimmunity and inflammation are big problems. My thyroid function is all over the place, fluctuating between hyper and hypo. My gut is severely leaky. Now I know the root of my SIBO is Lyme…it causes ileocecal valve dysfunction with motility problems. Many, many years of dysbiosis have resulted in a wide array of allergies/intolerances/sensitivities. My 25-OH-vitamin D is very low at 9.5 ng/mL. The doctor will produce a complete treatment plan and I’m now waiting for this.

    More was discussed but unfortunately my brain fog was particularly bad.

    CONCLUSION

    So the ME/Fibro has proven to be Lyme all along. As a child living in Connecticut, half an hour away from the birthplace of Lyme, I still never imagined it had affected me! I don’t know why. Perhaps it was a matter of bad timing that Lyme wasn’t on my radar.

    I remember picking ticks off our dogs and finding a big one in my long hair but that was a few years before Lyme gained media attention. And we moved away from Connecticut shortly after.

    The National Health Service in my area of the UK considers Lyme to be a 'ticking timebomb' due to the greatly increasing number of cases. It has been reported in more than 80 countries, including the Campbell Islands in the Antarctic Circle, believe it or not. (In that area, seabirds carry ticks.) If you have longstanding ME/CFS/FM, it is worth considering the possibility of Lyme.

    All the best.
     
    Last edited: Apr 20, 2017
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  2. Plum

    Plum Senior Member

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    @Allyb510 thank you for sharing. I'm always very interested in people's experiences with KDM (and have wondered about going myself).
    I would be interested to know what treatment plan you're given as well as how you get on.
     
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  3. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I have been considering get testing for Lyme. Did you get any support from the NHS for this?
     
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  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    #1 glad you finally got an answer and hope it helps from now on! :)

    #2 frikkin looks etc I got years ago when asking for Lyme test, here in Scotland...and then to find the NHS test wasn't worth poo, sigh

    #3 you note birds ticks...yeah, Plum Island, what a SMART place to carry out biological warfare tests, eh? just like scattering millions of ticks/fleas/mosquitoes over the years to see what their bugs cold do....on an island 30 miles from Lyme, and the island having a migratory bird wildlife sanctuary......

    [​IMG]

    :p
     
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  5. OhShoot

    OhShoot

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    It was the same with me. I went on a hike years ago and looked down partway through to find a ton of ticks crawling all over my socks. I thought I got them all off, and thought nothing of it, but...several months later I got something like a bad cold, and it all went downhill from there.

    But I just kept my head down and pushed on, which was not the smartest decision of my life! Thankfully I eventually woke up and did my own research and realized I needed to get tested for Lyme. The difference on antibiotics was stark. Though I've still got a long way to go.

    I'm glad to hear your NHS is paying attention to Lyme!
     
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  6. deleder2k

    deleder2k Senior Member

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    I hope that his treatment plan works out for you. I don't know how he diagnosed you, but I think that he frequently uses labs that also uses undocumented tests to diagnose lyme/borrelia. I can't tell, but it could be very well be that this is the case. If you have the test results I imagine you can check out what tests that turned out positive for lyme.

    I don't mean to curb your enthusiasm, but it is always wise to stay critical :)
     
  7. deleder2k

    deleder2k Senior Member

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    Did you get IV or oral antibiotics? Has the improvement lasted, or did you mostly go back to normal when you stopped taking antibiotics?
     
    MEMum likes this.
  8. Diwi9

    Diwi9 Senior Member

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    Allyb510 and Matthew Jones like this.
  9. OhShoot

    OhShoot

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    It's been all oral. I'm still on them, and on the times I have to stop or lessen the dose I do plateau or get worse.
     
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  10. JES

    JES Senior Member

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    I understand from first passage that KDM has a hypothesis that Lyme caused your disease to start. In the next sentence, however, you say that the infection is not active now, which if I read it correct, would suggest that you have no or little active markers of Lyme in your blood now, is that correct?

    In the the next passage I quoted you say that because of above, your ME/Fibro was proven to be Lyme all along. Just exercising a bit of skepticism, I would not count it as proven Lyme if it's all based on a hypothesis of KDM. The majority of patients that visit KDM get a Lyme diagnosis, from my understanding, just like almost everyone have enterovirus triggered CFS according to Dr. Chia. I'm not saying it could not be Lyme, but if it's based on a hypothesis without any sign of active antibody response, then I would be very skeptical about such a diagnosis and at least seek a second opinion from a Lyme specialist.
     
  11. Allyb510

    Allyb510 Senior Member

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    Hi. I have to admit my GP's responded quite well to these positive test results. I have appointments with a Rheumatology and a Medical Clinic, and she organised a number of bloods, including an NHS Lyme test. I don't know what type of test it was but I'll certainly be finding out.

    If you ask your GP to perform a test for Lyme because of a past history of tick bite, I don't see how they can refuse you. It's certainly worth discussing. There is also a new test from Finland in development, called Tickplex. Don't know too much about it.
     
    Last edited: Apr 21, 2017
    arewenearlythereyet and MEMum like this.
  12. Allyb510

    Allyb510 Senior Member

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    Will see what I can do. I'm not sure how long it will be before I receive his treatment plan. Why don't you see him? I don't think you'd regret it.
     
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  13. Allyb510

    Allyb510 Senior Member

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    Hi. I tested positive and have the results to prove it. My GP has had a look at it and I've been retested here in the UK on the basis of that. I don't know what the doctor says to other people but, with my medical history, he felt that Lyme was a possibility, and he was right.
     
    Last edited: Apr 21, 2017
  14. duncan

    duncan Senior Member

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    @Allyb510, I also would be curious as to how he determined whether the Lyme was active or not. It's kinda like piecing together a puzzle, and I have an interest in which doctors invoke which puzzle pieces.

    Ultimately, diagnosis in most cases remains a crap shoot. Unfortunately, the same can be said with treatment, although new therapies that take into consideration the concept of Lyme persisters look promising.

    I wish you success on both counts.

    I would also be interested in co-infections you were tested for. If indeed you picked Lyme up in Connecticut, WHEN may matter, as the prevalence of coinfections has risen in recent years dramatically. (btw, if it is from Connecticut, chances are this species of Lyme is Bb sensu stricto, which may impact how it manifests - but may not, as well, depending on one's Lyme politics.)
     
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  15. Hip

    Hip Senior Member

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    Did you have call the breakdown service for your tyre puncture because you have one of these modern cars that are not supplied with a spare tyre (only a puncture repair kit that does not fix large gashes in the tyre)?

    I find it crazy that manufacturer's sell cars now without spare tyres.



    Did your NHS Lyme test also come out positive, can I ask?
     
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  16. Allyb510

    Allyb510 Senior Member

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    Hi. That's awful. It's a shame that people have to worry about hiking and camping in beautiful countryside, in case of tick bite. It does make you think twice.

    What antibiotics have you found effective and which not? I hope you continue to improve. It's definitely a long, winding process I've heard.

    Well, it'll be interesting to hear what the NHS thinks I should do about it.
     
  17. Allyb510

    Allyb510 Senior Member

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    Thanks. I was tested for Babesia, Bartonella, Brucella, Mycoplasma, Coxsiella, Rickettsia and Yersinia which were negative. Chlamydia pneumoniae and Parvovirus B19 were positive as well as Borrelia burgdorferi sensu stricto. You were right about that. How does it manifest?
     
  18. Allyb510

    Allyb510 Senior Member

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    It was only a few days ago so the result is not yet available.
     
  19. duncan

    duncan Senior Member

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    Like any Bb species and strains you are likely to experience in Europe, except no ACA.

    The party line is that it primarily attacks joints, and it is sorta identified with swollen knees. But that pigeonhole has pretty much been exposed as a definition characterizing the scope of a disease, as opposed to the disease symptoms and etiology qualifying its definition. So, if you can imagine a manifestation, odds are Bbss can deliver.

    A growing community of researchers believes that primary manifestations include many that are neurological. In the US, that is disputed by the IDSA Guidelines, which deal primarily with Bb sensu stricto. I'm sure you have heard it has been misdiagnosed as MS, ALS, etc. It also can impact the heart; supposedly, too, eyes, the thyroid...it's a scrolling list. But how can it manifest? If it truly is a systemic infection that can attack tissue, organs, cartilage - singularly or in concert - well, the sky's the limit.

    Of course, in some people, it is purported to resolve on its own with no symptoms. Other resolve with IDSA-recommended therapies. Some need much more. Some appear to never resolve.

    For some, it may simply act as a trigger for ME/CFS.

    Relative to co-infections: As with Lyme testing, testing for coinfections can be unreliable. It took several years of negative tests before I tested positive for bartonella, which I have tested positive for now for four years running. And the first two times I tested for babesia I tested positive, but now I do not, despite never receiving treatment for it.

    So, when you go for additional testing after whatever treatment regimen is prescribed, you may want to recheck coinfections as well.
     
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  20. OhShoot

    OhShoot

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    It really is. :( I never used to worry about it, and now I don't even want to cut through a thin patch of brush in the backyard!

    Doxycycline is the main one I've been on and it has been super helpful, and Azithromycin has been useful, too. I was also on Sulfamethoxazole last month and my doctor actually pulled me off it because I was herxing too much! (She takes the slow-and-steady approach and wants me to limit herxing to 1-2 days.)

    I also have to mention an herbal combination I've started called Tox-Ease, which, while it does assist with detoxing, also reduces inflammation that the bugs like to hide in, so since adding that I've had to halve my doxy dose most days because I keep herxing! Which isn't a bad problem to have. :p Plenty more bug-killing to be had here.

    I have Lyme (in unknown quantities--possibly almost gone after over six months of treatment), Bartonella, and Protomyxzoa Rheumatica, if that helps any. Other coinfections are unconfirmed.

    Yup, I hope they don't give you any trouble!
     
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