Don't let the post treatment scare you off... this research is very interesting.
Wonder if everyone has seen this from months back?
My neuro said there is no definitive treatment readily available ... but the research is interesting. This disease is VERY complex indeed.
Peace, Love and Wellness, James
[ 08-29-2019, 02:46 PM: Message edited by: JRWagner ]
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Any doctor who just calls it Post Lyme (whatever) . . . is not likely going to explore the likelihood of chronic infection . . .
or the fact that many face complications not because it's "Post" lyme but because lyme was never treated correctly, thoroughly in the first place and it's gone on and on . . .or recurred.
There most certainly IS treatment for ongoing symptoms and that is to finally fully assess & treat the cause, be that lyme or other tick-borne infection . . .
yet, of course, other factors that any good LLMD would also consider: blood glucose issues / insulin resistance . . . nutrition deficiencies . . . environmental issues . . . sleep . . . Rx reactions (to any / all Rx that you may be taking) . . .
gluten issues, or other "offending" foods that cause inflammation, etc.
Most LLMD insist - or strongly encourage that all patients being treated for chronic / persistent lyme also address all these other mitigating factors so that the treatment has the best chance possible.
I would not trust any doctor that just lumps inflammation into "Post" lyme at all. It's ignoring the science of how lyme works in the body.
Find a doctor who truly understand the science of lyme while also being able to highlight an full plan of action to address the coinfections that might be on board . . . and the confounding factors that can be controlled with diet, etc.-. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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JRWagner
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Again, though, that term, "post-lyme" used is not accurate at all. They ignore not just the possibility of persistent lyme but also that most treatments are not proper approaches at all.
The want to ignore actual chronic infection - or the combination of other tick-borne infections as well. '
So much wrong with this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I'm glad they are doing their homework at John's Hopkins.
I suspect that much of Post-Lyme Syndrome is an ongoing infection of the intracellular form of Lyme, that probably does not show up on standard testing. Intracellular Lyme does not respond to Doxycycline or similar antibiotics which fight the siprochete.
Bartonella also has an intracellular form that can behave in a similar manner.
Furthermore, Lyme may come back after treatment, especially if the person has parasites that may be harboring it and releasing it post treatment.
People may also get re-exposed to Lyme from sexual contact or from a bite without a bullseye rash that went unnoticed.
In addition, I think much of the "Post-Lyme Brain Inflammation" may be related to a variety of undiagnosed and untreated Encephalitis Viruses that may be co-infections of Lyme.
Common viruses may include: CMV Cytomegalovirus EBV Epstein-Barr Virus HSV Simmplex 1 and 2 TBEV FSME Tick Borne Encephalitis Virus LCMV Virus Powassan Virus West Nile Virus Rfit Valley Fever Virus St. Louis Encephalitis Virus Rift Valley Fever Virus HTLV-1 and 2 Viruses Etc.
People who are especially susceptible to Lyme tend to be also highly susceptible to toxic mold. Mold symptoms mimic Lyme symptoms and mold illness and toxic mold in homes may be missed.
If your'e not well, you're not well. I would never accept a flat statement that you just have to live with it and you won't get better! Keep looking, and I believe you will find your answers!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
I have cognitive stuff that doesn't seem to be resolving. It does get better (I become more focused) with abx though but when I go off them I slowly decline until my next dose.
I was reading LymeMD blog and he wrote in June about lyme, alzheimers and enbrel.
quote: Alzheimer's is in part motivated by inflammation. Other major factors are: production of amyloid beta protein (AB) (plaques and tangles), genetic factors and multiple external factors.
It is thought that AB protein is a naturally occurring antibiotic which responds to inflammation. Discussed elsewhere. Lyme resides in the brain along with many bacteria, viruses, protozoans. It is true that spirochetes have been reported to aid in the transportation of AB into the brain. Infection (or colonization) may be omnipresent and therefore not the whole story -- or the most critical piece.
The vast majority of my patients present with cognitive complaints. Many or most Lyme patients, at one time or another fit the criteria for a disorder call MCI, minimal cognitive impairment. The mainstream medical community considers this a pre-Alzheimer's condition, often.
What's a Lyme patient to do?
First off, if symptoms completely resolve with usual therapy do nothing.
If you are a patient who has had very aggressive therapy, e.g. months of IV antibiotics and cognitive symptoms persist, look up MCI and consider the following:
Get an AB PET. The tests measures metabolic activity in the brain and the presence of early AB protein deposition. IF the test is positive you are at very high risk for developing Alzheimer's.
So I guess I get to see if I am going to develop Alzheimer.
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