Rare? Amyloid proteins related to Lyme?

[leilajax]

I posted this question on the thyroid disorder forum, as well, since it could be related to either Lyme or Hashimoto's.  there is no shortage of issues that Lyme and mimicking AI disorders can cause!  I just got a call today about a "rare" positive on an amyloid protein blood test.  I did a little Internet research on the subject, but again, stopped short due to the fact that none of the info was "good news".  Has anyone else tested positive for amyloid proteins or heard of amyloidosis or know of a connection to Lyme?  Any info would be much appreciated!  Thanks!

[JackieCalifornia]

Welcome to MedHelp Lyme -- and thank you for your post.  I am very sorry to hear about your daughter's illness and your sister's untimely death as well.

There is still much confusion in the medical community about Lyme diagnosis and treatment, and the more information we can share and the more we all understand, the better for ourselves and others.

My understanding of steroids being the wrong thing to take for Lyme disease is the same as yours --

[Roubduby]

Just had a daughter diagnosed with Lyme so I've been reading a lot about lyme and learned the worst thing you can take if you have it is "steroids". So be very careful. While steroids will make your symptoms go away temporarily  and you will "feel" better, the bugs are having a party inside you and things are actually getting worse.  ** Also, my older sister passed away with amyloidosis. I just know she was very sick for several years, stayed in bed a lot, complained of many different symptoms, knots in back of her head (which I guess would have been cysts), and about once a week she would make a trip to an ER. She took valium for years. We were told it was a very rare blood disease, similar to leukemia, but not cancer, and had they diagnosed her sooner she could have had a bone marrow transplant and gotten well. Hope this helps a little.

[JackieCalifornia]

I just did a google search for

          hashimoto's thyroiditis lyme disease

and got quite a few hits --

Two things I saw:

1 -- there seems to be some common link to Lyme and Hashimoto's from the brief reading I just did, perhaps just an incidental reaction because of the mess Lyme makes with the endocrine system (which includes thyroid); and

2 -- taking steroids is the exact wrong thing to do if you have Lyme:  steroids suppress the immune system, which needs to be up and fighting against the Lyme bacteria.  

If your Hashimoto's is caused by Lyme, or even if they are independent conditions not related to each other, I personally would be sure my Lyme doc is on board with steroids before proceeding.

[leilajax]

I most definitely have Hashimoto's.  there is no mistaking it.  TPO antibodies are >1000 (off the charts) and supposed to be <35.  Thyroglobulin antibodies are 1848 and supposed to be <20.  

[leilajax]

Thanks for trying to calm my fears.  That's precisely what I had read about amyloid and Lyme.  Unfortunately, amyloid positive serology is very rare and even speaking with Hopkins today they know very little.  They say the positivity will most likely have to be treated with steroids providing today's ID testing comes back negative:(

[mojogal]

This is a little off topic but did you ask your LLMD if you really have Hoshimotos? I was told I had it but my LLMD says I don't. I also tested positive for MS and Lupus but it was discovered those were negative in reality too. Can't remember if I asked you before. Sorry.

Take care

[JackieCalifornia]

I found this abstract (a summary) of a scientific neurology paper about Lyme and amyloid from 3 years ago, so relatively recent.  [pasted below]

As I read it, it says that a Lyme infection can indeed affect amyloid, but it doesn't go any further than that.  I read it to mean that Lyme's action to cause inflammation [like in the knees etc.] can also affect amyloid tissue in the brain.  

There does not seem to be a conclusion that it's good or bad, but simply notice that it happens, as part of Lyme.  Just as joints and muscles can be affected by Lyme, so apparently can amyloid tissue in the brain.  It's another marker to help docs diagnose Lyme, and perhaps gives ideas for treatment, but this paper doesn't go that far.

It is already well known that Lyme affects the brain and mental processing, and this is confirmation of one mechanism through which it may occur.  I don't know, but this may be part of what causes 'Lyme brain' -- forgetfulness, confusion, etc. -- that many of us have with Lyme.

So this does not sound like 'new' bad news, just scientific confirmation of what seemed to be going on anyway.  Some people get more so-called neuro-Lyme, which affects the brain and nervous system; others get a more joints-and-muscles set of symptoms.

I wouldn't lose any sleep over it -- but you might, for your peace of mind, ask the question of your doc at next appointment.  Hope that helps --
  
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BMC Neurol. 2010; 10: 51.
Published online 2010 June 22. doi:  10.1186/1471-2377-10-51
PMCID: PMC2902447

"Neuroinflammation in Lyme neuroborreliosis affects amyloid metabolism"

"The metabolism of amyloid precursor protein (APP) and beta-amyloid (Abeta) is widely studied in Alzheimer's disease, where Abeta deposition and plaque development are essential components of the pathogenesis.

However, the physiological role of amyloid in the adult nervous system remains largely unknown. We have previously found altered cerebral amyloid metabolism in other neuroinflammatory conditions. To further elucidate this, we investigated amyloid metabolism in patients with Lyme neuroborreliosis (LNB). ...

RESULTS:

"In the cross-sectional study, LNB patients had lower levels of CSF [cerebrospinal fluid] alpha-sAPP, beta-sAPP and P-tau, and higher levels of CSF NFL than healthy controls and patients with Bell's palsy.

In the prospective study, LNB patients had low levels of CSF alpha-sAPP, beta-sAPP and P-tau at baseline, which all increased towards normal at follow-up.

CONCLUSIONS:

"Amyloid metabolism is altered in LNB.

CSF levels of alpha-sAPP, beta-sAPP and P-tau are decreased in acute infection and increase after treatment. In combination with earlier findings in multiple sclerosis, cerebral SLE and HIV with cerebral engagement, this points to an influence of neuroinflammation on amyloid metabolism."
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