If lyme disease is an inflammatory disease that attacks the central nervous system and peripheral nervous system, why don't we have a fairly "consistent treatment" recommendation from neurologists for healing the nerve inflammation?
I know taking abx attacks the disease. However, many on this board have taken abx for years and STILL SUFFER from inflammation of the nerves, resulting in stiffness and pain and fasciculations.....
I've been reading on this board regarding the treatment/healing of nerves and there seems to be no consistent approach. I realize that coinfections may call for different treatment.
However, it would seem that there should be a fairly consistent treatment for nerve inflammation (I'm not talking about palliative pain care).
Is there a common recommendation from neurologists for the treatment of nerve inflammation? What am I missing? It just seems there should be more consistency regarding this???
Posted by Cold Feet (Member # 9882) on :
Bugg, that's a good question -- I can only reply with another: If the inflammatory process continues, doesn't that imply that the source of inflammation may still exist?
Posted by Lymetoo (Member # 743) on :
Well, even if there were a plan it wouldn't involve antibiotics if neurologists were in the mix.
Very good question.
Posted by coltman (Member # 21272) on :
Isn't it pretty consistent that inflammation is treated with corticosteroids? And that what neuros will prescribe if the see MS like structural changes?
It doesnt look like best course of action if source is chronic infection though
Posted by MBB3 (Member # 13459) on :
Bugg, you're asking the same question I ask myself. And I also ask is what IF 'demylination' maybe more of a case of nerve inflammation in some people?
I say this from a personal standpoint as I have what seems like spinal position dependent nerve pain. If I had demylination, I'd think I'd have this burning ALL of the time, I don't, it surfaces or worsens from certain positions and prolonged surface to skin contact of affected areas.
To flip the coin, vasculitis (inflammation of the capillaries) can also cause nerve pain at the peripheral level - once again, nerves being pressed by inflammed capillaries. I think this is possible, correct me if I'm wrong?
BTW, it's my understanding that Lyme can cause both nerve inflammation and vasculitis? Yes or No? If so, wouldn't that a double-edged sword against a normal nerve spatial environment.
MBB3
Posted by cantgiveupyet (Member # 8165) on :
I have often wondered the same exact thing. They dont offer any treatment protocol that I know of for this.
Posted by Keebler (Member # 12673) on :
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From my experience with many neurologists - some of whom even saw recent positive lyme and babesia and ehrlichia tests and still kicked me out the door as a basket-case due to seizures.
They don't believe it that borrelia causes any problems. Often it is just that clear cut for most neurologists. They don't understand it. They don't want to learn from others who have studied Bb and other TBD.
They would rather look down upon the patient, thinking something is wrong with their morale character rather than understand persistent stealth infection and the body-wide damage. If they don't see the cause of inflammation, it's all in a patient's head - or autoimmune and they bring in their old standby: steroids (not understanding that is the wrong treatment for a lyme patient unless in a life-threatening emergency).
They also like to keep things compartmentalized. Usually, a neurologist would never consider that an impaired liver - and toxins from that - could affect the brain.
Some of them still don't even see the connection between the damage of gluten and the brain for those in whom gluten is a problem.
And, BTW, many neurologists really don't even understand how the inner ear can mess up brain function. Even after some very clear inner ear tests came to light, they would just say, "can't be" or that they didn't see how my hearing could cause me so much pain.
These are doctors who really like things to be black and white. And many just don't want trouble. They may not be able to practice outside of the suffocating boundaries of their clinic. It's a clique and if one doctor starts to "stray" they are swiftly chastised.
And, sad as this may sound, doctors don't like to take cases that seem doomed. Again, it's sad but the lyme patient has a great deal to overcome and needs tremendous and complex measures. That is just too much work for many doctors. Insurance will not compensate them for their time in even seeing the patient long enough or in the time it will take to learn about all this - off the clock.
These are just some of the things to help us understand why we get the reception we do as we look to find answers from those we think should know.
Now, of course, there are some neurologists who are brighter and have courage and take the time to look further - and treat the patient as an equal human being. Those are the kinds of doctors you want to employ on your team.
(175 customer reviews) - very much worth reading - whether or not they liked the book - there are some thoughtful considerations that help us better understand how to proceed.
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[ 09-16-2009, 02:26 PM: Message edited by: Keebler ]
Posted by Bugg (Member # 8095) on :
Thanks for chiming in...I appreciate your thoughts...
For those who've been to neurologists, it's my impression that their tests on lyme patients usually find no evidence of inflammation???? Is that the general consensus?
I realize that the CD57 test and C reactive protein etc can reflect inflammation; however, I'm wondering if ANYONE has been to a neurologist who has come up with a test which shows the inflammation from lyme???
It just seems counterintuitive that our bodies, even after treatment, can remain so inflamed and yet there's no test to reflect this???
It's bizarre that so many of us can literally feel the pulsations in our body and yet there's no test to reflect this????
[ 09-16-2009, 01:43 PM: Message edited by: Bugg ]
Posted by Keebler (Member # 12673) on :
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True, they simply do not recognize signs of inflammation or they don't think it's a big deal. Most of the time, by the time a lyme patient sees a neurologist, things are severe and that is too much for the doctor to take in without blaming the patient for faking.
Patients SYMPTOMS should be enough to show something is wrong. There are not tests for everything. I think we, as a society, have come to think that there are tests for everything. Symptoms should count for a lot but they often are disregarded.
A SED rate test will show inflammation. Cytokines, too. I would not put too much on the CD 57 as it can be wrong or not show enough. But there is no one test that can show the degree of what is going on with lyme. That comes from conversation with the patient. And most doctors are simply blown away with such a thing. And, again, without black and white tests, insurance is not a team player.
Rather than use the word bizarre (as that can label a nutso patient) . . . yes, it is alarming that some doctors often cannot detect signs of inflammation in patients with chronic stealth infections.
Again, there are some very good doctors out there. At this point there is much wrong with our medical system and it will save us time and grief by just seeking out the smart doctors, getting better and then trying to change the way things work.
We also have to remember that in the range of what neurologists do - how they can help us is very limited. We need doctors to treat the infection and help us get our bodies stronger again. That is not what neurologists do. And much of the burden fall to us - this is a very intricate path and it takes time and personal dedication to the very best we can give.
And, for anyone with inflammation, going or staying gluten-free is one of the best things we can do. It may not fix everything but it will give the rest of the processes a far better chance.
A interesting search at PubMed: gluten, brain
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Posted by madge (Member # 13704) on :
Very good topic...i took my husband to Jeff Hosp. in Phila...to the Neurologist Dept...asked about inflammation in the brain...could this be causing his 24/7 head pain and eye pain....i thought they would be interested and want to try to find or look for something...but no...they just looked over his records and said...take this pill it may help... Madge
Posted by trigal2 (Member # 20578) on :
I have been to many Neurologists and Neurosurgeons since my bout of Neuro Lyme in 2005.
All dismissed my Lyme, however, they did find another condition that does share many Lyme symptoms and that is what they choose to focus on.
I was diagnosed with a rare brain condition called Chiari Malformation whereby the brain literally herniates into the spinal canal casuing a restriction in the flow of CSF in and out of the brain. This is a congenital condition and I had it since birth.
Tough thing has been to have my LLMD and Neurologist/Neurosurgeon communicate and the lack of communication makes things very difficult for my treatment.
I did have spinal surgery in attempts to correct the chiari but still have symptoms so one might think the symptoms were /are coming from Lyme.
Bottom line is that every NL/ NS I have ever seen has told me to consult with my LLMD for any questions related to lyme.
Problem is is that when I get vision issues and head pressure and pins and needles etc.. I don't know whether I need to call my NS or LLMD!
Posted by Wimenin (Member # 15294) on :
The only way a neuro will treat inflammation due to lyme is if a patient tests positive to a serological lyme test, which often is the elisa/ab which often comes back negative.
Even if a patient does test positive, the prescription will be two weeks doxy per the cdc, and thats it. If the patient continues to have problems, then they will say its post lyme syndrome, or else the patient has somatization disorder..aka..its all on your head, so we'll refer you to our shrink who will sit there smugly and say..so..whats the problem..why are you so miserable?..were you abused as a child?...are you having problems at home?...problems at work?...do you hate your parents?...hate your spouse?...this must be all anxiety, so learn yoga, mindfulness, breathing techniques, ..oh, times up. See you in two weeks.
Sorry, aside from a neuro offering multiple tests to rule out other things, most neuros dont know squat about lyme, and even when handed lyme literature, will refuse to believe that the patient might actually know more then them about the topic, and that maybe, just maybe it could be lyme. The reason why..simple..lyme is a clinical diagnosis, and most neuros are strictly test orientated in their diagnosis.
sorry, just quick rant..
Posted by Keebler (Member # 12673) on :
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going back a few posts, MBB3 has some key questions. I'm no expert (of any kind) and offer just what I've learned over the years:
asked: " . . .['demyelination'] maybe more of a case of nerve inflammation in some people? "
-- Yes - and lyme CAUSES demyelination (damage to the thin coating around the nerve, the myelin sheath.)
" . . . To flip the coin, vasculitis (inflammation of the capillaries) can also cause nerve pain at the peripheral level - once again, nerves being pressed by inflammed capillaries. (?). . ."
-- Yes
asked: " . . .Lyme can cause both nerve inflammation and vasculitis? "
-- Yes.
Bottom lyme: treat the infection(s); support the body. Remember that magnesium really helps decrease inflammation and helps nerves, too.
Certain supplements can help the lining around the nerve (the myelin sheath) but that is more difficult to repair. Stopping the infection before damage is preferred. A good LLMD can speak to that. -
Posted by SWLisa (Member # 14093) on :
The reason we don't is that the neurology parent organization uses the IDSA guidelines. That is why. Every single medical specialty has written guidelines for different diseases. The big thing now is "evidence based treatment." So.....once I looked at a few of their websites - Family Practice, internal medicine and neurologists and they all go by IDSA. So that is where the change needs to be made......
Posted by MY3BOYS (Member # 17830) on :
i am blessed to have a GREAT neuro who was the one to dx lyme. lyme was the last thing checked for and i will not hold that aginast him..not his fault the spinal tap dang near killed me (dr that "tried" x3 blood patch is one who made it worse !!)
anyway- when i first saw him i had a neruo "attack" had been having symptoms increase but to the point of acute neruo--- easy. im in med. profession and thought same thing my pcp, rhum did = MS.
just need some testing to confirm, steoids, methotrexate in the meantime.
well, when tests were "normal" he was confused, so was i
he is new to our state, via NY and rather young. from what he understood of tx- lyme not real issue.
he did western blot, not elisa. when he called me at home to tell me was + but confused bc IgM, not IgG and that means new infection. but symptoms been awhile.
he called some of his colleges in NY and got me on doxy and he knew the whole IDSA/ ILADS was is in place.
i am his first pt. and he has listened, believed me- that is HUGE !!!! he has taken time to learn, look things up,etc.
we are always having conversations about lyme when i see him.
he was the one mad at rhum for putting me on steroids before has a dx. she was doing what she thought was best, she thought she had been tx me for auto-immune d/o for yrs. she saw me going down the drain and at least tried. yes, the steiods made things worse.
but, he does not have a majic cure to offer me . i take meds for neruo symptoms that have helped. he KNOWS steroids or immuno supprsants are a no-no. that is what u do for inflammation.
he gave me the doxy rx.
zyflamend is another supp that helps with inflammation