-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Sigh. I wish that I could get rid of the Sjogren's----it's truly horrible. It's destroying my teeth, and my eyes are horrifyingly bad between this and many other manifestations of the infections + getting older.
But having had it for many decades, long before I knew what it was or that I had TBD's, I don't think it will ever go away.
I do have neuropathy, as proven by nerve biopsies. Arghh!
Posts: 3771 | From around | Registered: Mar 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
The Silent Saboteurs: Unmasking Our Own Oral Spirochetes As The Key To Saving TRILLIONS in Health Care Costs
-by William D. Nordquist, BS, DMD, MS
& David J. Krutchkoff, DDS, MS
236 Pages, $25.95 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- IMO (and experience from years of dealing with Sjogren's), my take is that Sjogren's can be CAUSED by lyme or other chronic stealth infection. There are many others to consider, too.
It may be that the infection (or infections) have not been adequately addressed, or they cause damage that may be slow to repair, or unable to repair totally.
There are so many reports of successful remission from lyme where patients who have had Sjogren's symptoms saw those disappear.
Of course, I'm sure there can be many causes but spirochetes of various strains seem a major culprit.
11. What are the most common diseases that are often mistaken for Lyme disease?
There are many different diseases or conditions that are found in patients with Lyme disease. All too often Borellia organisms are not considered as the source for patients complaints and their symptoms. . . .
[last line, paragraph 3] . . . Sjogrens syndrome . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Evidence for coxsackievirus infection in primary Sj�gren's syndrome.
Triantafyllopoulou A, Tapinos N, Moutsopoulos HM. SourceUniversity of Athens Medical School, Athens, Greece.
Excerpt:
CONCLUSION: We provide evidence that primary SS may be associated with coxsackievirus infection of the MSG epithelial cells and focal lymphocytic infiltrates.
Our findings are formulated in a hypothesis concerning the possible role of coxsackieviruses in the induction and maintenance of autoimmunity in primary SS. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Centre for Experimental Medicine and Rheumatology, William Harvey Research Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, United Kingdom.
Lucchesi D, Bombardieri M.
The role of viruses in autoreactive B cell activation within tertiary lymphoid structures in autoimmune diseases.
Excerpt:
. . . susceptible individuals, persistent viral infections may contribute, directly or indirectly, . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Mar 7, 2013 - By Kristina Fiore, Staff Writer, MedPage Today
[CVA6 strain] -- A newer strain of the Coxsackie virus has a more extensive and varied clinical presentation than classic hand, foot, and mouth disease, researchers reported here. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Coxsackievirus is not listed here, however, that is a very serious consideration. Not sure of the best organization to find accurate detail.
First, web-search and take note of the strains that come up such as B3 and A9, etc.:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. This is because
(1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens . . . . Focus Diagnostics Lab:
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here�s some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
The symptoms for a chronic coxsackie infection are the same as the symptoms for a chronic lyme infection. Basically, chronic viral infections look like chronic lyme symptom wise.
That is why you CANNOT go with a "clinical" diagnosis for lyme. You must run all the tests you can think of (including viral panels) to determine what the heck you are sick with.
Having said that, it is entirely possible to be sick with more than one pathogen, and it is possible to have both bacterial and viral pathogens be part of the problem.
I had high antibody titres to a number of coxsackie B viruses and they have dropped remarkably with treatment (oxymatrine) and I have felt better. Both ID doctors that I see (and they are wonderful ID doctors by the way) have been amazed by my lab results and how I responded to the medication.
Scroll down until you see the "enterovirus session."
Get tested for lots of things...treat what is most obviously wrong. If you have off the charts antibodies for viruses and only one or two lyme bands, treat the viruses first and see what happens. If lyme is most obvious, treat that first.
Don't treat the maybes until you've tested for everything and treated what looks obviously wrong. Otherwise you could be barking up the wrong tree and you will never get well.
In my case we are addressing HHV-6, EBV, HSV1, VZV, Cpn and enteroviruses.
Lyme may or may not have been part of my picture. Most of you, based on my lyme testing would say I had/have lyme. Maybe, maybe not. I do have a bacterial infection, that is for sure. Whether it's lyme or Cpn would be the question. Since I have off the charts antibodies for Cpn that's what we are treating.
Best, Timaca -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Timaca mentions that she did so well with Oxymatrine regarding coxsackie. A good naturopathic doctor (ND) might be best consulted, of course, preferrably a LL ND who would also know all about lyme and other chronic stealth infections.
2/3 of the way down, section: Most Likely an Enterovirus (Coxsackievirus B or Echovirus)
. . . Herpangina sore throats are usually only caused by certain viruses of the Enterovirus genus, namely enterovirus 71, coxsackievirus A16, and coxsackievirus B species. . . .
Here is a list of enterovirus symptoms (link).
Here is a list of diseases associated with enteroviruses (link).
. . . ARUP Lab micro-neutralization tests. . . .
7/8 of the way down:
Enterovirus Treatments . . . . [many options] . . . oxymatrine . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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