Tick-borne illnesses that look like ME

Centime Tara

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There’s an article in the current Atlantic by Meghan O’Rourke, a writer I’ve been following for some time because for years she believed she had ME, and was writing a book about it. Here’s the link: https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/

It seems that she’s recently come to believe that it wasn’t ME after all, but more likely an unusual case of Lyme.

I’m going back to Mayo Clinic in September and have requested extensive testing for all possible tick-related illnesses. I’m wondering if any of you have had this testing? Did anyone with ME also have Lyme or one of the other diseases? I’m about to start a study of possible overlaps, so any advice would be valuable to me.

I want my life back! And I’m not quite ready to say OK, I’ll just rest 90% of the time and live the rest of the time in slow motion. I’ve been a very dutiful patient and don’t feel the slightest bit better. So while I’m waiting for Mayo, more research!
 

duncan

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Mayo would not be my pick. :)

You will have to look at many TBDs. I test positive off and on for three, but there are likley at least five that can mimic ME/CFS:Bb(Lyme), B Myamotoi, Bartonella, babesia....Hmmm, I had another in mind. Ehrlichia? Hopefully it will come to me.

Most of the tests suck. This is characteristic of the tick-borne disease diagnostic territory, largely speaking. Certainly true of the three B's.
 
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percyval577

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I remember to have had ticks when I was four, now I see also that my life changed quit a bit. The catastrophy came about with EBV 25 years later. After this event I ever tested negative for Lyme until I had begun an anti-borrelia diet, then after a year an ELISA and a western-blot suddenly were positive ("compatible with late stage Lyme").

So I think it´s a two hit event, first borrelia released packages of manganese into the blood stream when the few ones seldom divided, and this altered gene expression of iNOS, and later EBV did something, possibly blocking vitamin D receptors which may have led to a decline of the zinc-manganese transporter ZnT 10.

some literature here:
vitamin-d-and-viruses-that-can-trigger-me-cfs
vitamin-d-and-zinc-manganese


My strange symptoms then havn´t been classified as neuroborreliosis, in terms of treatment I am not in odds with that. I ate/eat food up to about 800µg manganese per 100g, now I figured out that I can drink tea when I also drink a sip of vitamin D before a sip of tea, which is nice (I loved drinking tea). So far it was a very slow improvement and difficult, I could not work anymore, but relief of the worst symptoms.

I meet the CCC, and I think after having begun my diet even the ICC (it´s not all that easy). Interestingly, when I began my diet I made mistakes, and the worsening arrived 22 hours later, so delayed PEM-like, and lasted for 26-28 hours. Three heavy mistakes announced themselves quite soon and lasted for about eight days. I wasn´t aware to do pacing, but intuitively I did, short termed as well as long termed.
 

Aerose91

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I've been told babesia can cause exercise intolerance much like M.E. Lyme can cause oxidative stress which can cause fatigue, brain fog and exercsie intolerance. Im sute there are others.

I have lyme, babesia, bartonella and mycoplasma but treating them has never given me any improvement. My guess is the immune factor reigns supreme, here
 

Centime Tara

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I've been told babesia can cause exercise intolerance much like M.E. Lyme can cause oxidative stress which can cause fatigue, brain fog and exercsie intolerance. Im sute there are others.

I have lyme, babesia, bartonella and mycoplasma but treating them has never given me any improvement. My guess is the immune factor reigns supreme, here
@Aerose91 This is very helpful—thank you. I assume you were treated with antibiotics?
 

duncan

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@Centime Tara Where? The short answer is there aren't many good places. There are, however, personally places I would avoid, and Mayo is one of those. Think of Mayo's ME/CFS history, too.

Anyway, if I had to pick a PLACE, off the top of my head, I suppose it'd be Stanford or Stonybrook. But you don't have to pick a place. You could just order the labs thru a willing doctor or maybe even your self (?) thru places like Labcorp (I think) or Igenex(Ithink). Best to go thru a trusted infectious disease doctor. Places like Mayo or you name it don't really bring any value-add to the equation, as far as I know.

Whatever your decision, make sure you get a western blot for Lyme. Also, do your homework on expected results - and inherent limitations of testing for babesia and bartonella. Mayo, I suspect, may not even test you for Bartonella as part of any TBD diagnostic protocol because the IDSA won't acknowledge it's a TBD. So, make sure you request it - it's symptoms can mimic ME/CFS.

Also, make sure your insurance covers any testing.
 
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valentinelynx

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If you can afford it, the doctors at the Center for Complex Diseases (Dr. Kaufman, Dr. Chheda and I think there may be a 3rd doctor now) are experts on tick-borne diseases as well as ME/CFS and its related issues (POTS, MCAS, CCI, etc). They do not take insurance and are not inexpensive, but if you can afford it, it can be well worth your time and money.
 
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