BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
If you have nerve damage, can orals help? If you go into remission, can the nerves regenerate, or are you stuck with the damage forever?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Not always. I had an abnormal MRI with spots and suggestions of atrophy. I'm treating, but 11 months into oral therapy my MRI was NORMAL!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
does that have something to do with nerves?
I'm afraid that nerve damage is causing the abnormal motion of my vocal folds, which causes my difficulty breathing. So I am deathly afraid that this may be permanent!!
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
I am kind of curious about this too. When do docs recommend oral vs. IV antibiotics. Also do most insurances cover it? For how long? Looks like some people rebound after going off. Doe some people become cured after a round?
What is the process of receiving IV antibiotics like?
Thanks.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
I would say no. Most all of us have neurolyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Having problems breathing sounds very scary. Are you seeing a good LLMD?
I have neuro lyme and it has gotten much better on orals. I am 95% in the Bb area of recovery.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
recently an llmd said all chronic lyme is neuro---sorry don't know who said it
but no...you do not need iv just becasue you have neuro
it is a misunderstanding the iv is better than orals
orals are much safer-you don't deal with the infection problem
breathing problems are very serious and it would be a good idea to have a pulmonary specialist as well as your llmd
i was dx copd at one point and it was not related to the lyme...it got better with other tx so be sure you don't blame everything on the lyme
its real important to check other stuff out and fix what you can
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I do not see us as all the same. I think we all vary in our presentations at support groups. As for me, I've had Lyme for almost 30 years now, and I was never knocked out with neurolyme - more the fibromyalgia kind and other symptoms, but I could still think throughout.
But back to your question, yes, I have witnessed those with severe neurolyme usually getting IV treatment.
Posts: 13116 | From San Francisco | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
neuro isnt just cognitive...don't you think fibro is neuro? do you get hot spots and stabbing pain? numbness and tingling? tremors?
i don't really know. no one probably really knows. but i did hear (or read) that an expert said that. that all chronic lyme is neuro.
i still don't accept fibro as a dx. i just think it is undx lyme. but that is just me. maybe my way of rebelling at being dx for it for 12 yrs before my lyme test was pos. i don't like it when they don't know what caused it or how to fix it.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
My very well known LLMD told my husband that he needed to be tested for lyme. He has been suffering from "fibromyalgia", exhaustion for many years. So finally we got him tested. Doc was right...he, too, has lyme.
The VA doctors told him there was no chance at all that he had it and they recommended a sleep study! Now we have to figure out how to pay for his treatment. My care is breaking our bank!
I have serious neuro lyme, but I think/hope that my husband's has not gotten that far. If we get him on to the right antibiotics he should see some improvement. Meanwhile I need to face up to the fact that I will probably need IV abx.
For the past two years he has been unable to work very much at all so we are really struggling financially. LLMD's are so expensive and Social Security does not cover it. I don't know how we can afford IV abx.
Now that my son and his family live here we are spraying the yard and hillside to protect them from ticks. We may even have to have our house tented.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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