posted
I used to post on a lyme board regularly several years ago. I got lyme back in '94. I had oral abx and was treated again by a lyme doc in 2000 with oral abx. Now I receive IVIG for autoimmune autonomic neuropathy, prescribed by a main line neurologist, for what is considered a conventional disease. I would not be receiving IVIG for lyme in my state...we don't have lyme here. I would not have known I had small fiber neuropathy and the subdisease of autonomic neuropathy unless I had skin biopsies. I am wondering how many lymies might have small fiber neuropathy or autonomic neuropathy? Skin biopsy will confirm small fiber neuropathy or peripheral neuropathy, its other name. Given the diverse symptoms of Lyme disease, which are almost identical to small fiber neuropathy....one might wonder if there is a link? My name is 8crow because I honestly thought my disease was in my head, and I could work my way out of it. On the good side, I have a 'bowflex body', lol. IVIG costs about $3000 a pop around here. I had a blitz of 25 grams every other day for 10 days (5 tx) then once per month (on month 4 out of 6 prescribed) which is keeping me in an upright and mobile position, hell, I can even walk without tipping over! I have to say for someone who has NO sed rate (runs 0-4)....and never gets an infection, no colds, no flus, nothing....I am still sick, and given neuropathy, I don't suspect I will get much better, or for at least very long. Any demise I might have won't be chalked up to Lyme.
IP: Logged |
posted
via an expert neurologist lyme disease does cause small fiber neuropathy. that is why you probably have it. and no it won't show up on an EMG.
it may be in your best interests to try a long course of antibiotics via oral, intramuscular or preferably since your case is advanced IV. the IVIG will facilitate the antibiotics.
the intramuscular bicillin shots are not too expensive and if you take 2-3 shots a week it is about as proficient as the IV. some people do better with the shots than IV because it has a very long half life.
there is a lyme support group if you click on the support group page. that can help you locate a dr in your area.
don't sell yourself short, go for the best treatment.
best of luck....
[This message has been edited by zipzip (edited 18 April 2005).]
posted
Do you have any medical abstracts concerning Lyme causing small fiber? I believe my neurologist would look at it. You are right, it will not show on EMG, a skin biopsy HAS to be done. I can tell you I have been through it all in 11 years, and now all the cardiac, gastrointestinal, numbness, tingling, pain, etc all fit together neatly in small fiber neuropathy. I even have global anhidrosis, which is advanced small fiber. And to think it was all in my head for all these years.
I am the walking, talking, medically literate illustration of what happens with Lyme. I was never given IV antibiotics. I did have tons of orals over the years, and at this point, given my small fiber status, I would not take Flagyl (metrodiazanole) again, as small fiber can be caused by it. As a matter of fact, I am leery of any drug ending in 'anole'. Fortunately I can rule out Flagyl as the cause, as I was sick way before I took it...but people need to be aware of the effects of that drug, as well as the benefits. (Just like chemo)
So the medical community is still at a loss as to why I have this, seeing that I am not diabetic, don't drink alcohol, don't appear to have amyloidosis, or a hereditary sensory neuropathy and have been a competitive age class athlete well into my life. I was in a car accident many years ago, and that could have caused it....but the Lyme, nope, not that.
I was a definite deer tick bite ('94), EM rash, rising titers aborted by treatment with too little amox. Lyme never entered my mind again after the initial amox, because, I was 'cured'.... and then negative titers, except on the LLMDs test...can't remember if it was Igenex or some other one that has different standards than any clinic in my state uses....I feel I had an adequate amount of oral antibiotics in 2000. I never got IV, and that might have been the problem to start with, seeing as it is my peripheral nervous system which is shot, (and pretty well, shot to hell, by the way). "Peripheral" makes it sound so unimportant, until you consider your heart beat is 'peripheral' and so is maintaining your blood pressure, body temperature and bowel and bladder control, not to mention making sweat,spit, tears, and other minutia of daily life ...this has been a real adventure trying to do this all myself, while maintaining a job, lol...talk about "multitasking." Well, now I am too sick to do much but sit on my stability ball, and walk. At least my dogs still like me.
Anyway, it is evident, that I am going to 'live' somewhat impaired, for a somewhat 'indefinite' time....and die of something 'other' than lyme (hey, I did raise a bunch of great kids, accomplish a few athletic feats over the last few years and even opened a business) but, this is catching up on me.
I actually have a neurologist I adore and respect. I can tell you I am not going to go the antibiotic route anymore.....my CSF even came back negative...so they say no active lyme.....I honestly don't think I could live through any more abx. Besides nerve regrowth is rare. At best, I could perhaps talk them into long term tetracycline, but even then, I would have to weigh the risk against my nutritional status.
You know, I consider myself fortunate for having been diagnosed with an 'acceptable' disease like small fiber neuropathy, actually my diagnosis is a bit more dramatic with 'autoimmune autonomic neuropathy'....at least I get the IVIG, and NOW they believe me when I say I am sick. The autonomic part is very scary though, having an untrained heart rate of 46 or so and a blood pressure that does what it pleases....not to mention the incessant pain, which has never gone away since '94.
I hate to say this, but could you imagine the public panic if they knew you could get this sick from this disease? My personal opinion is, Lyme will never be acknowledged as the cause of all of this because the cost to insurance companies and the government would be astronomical....so they let some of us die from this and call it something else....it keeps the public panic down. (Just like the mad cow crap...and I don't mean to sound paranoid, because I eat beef, knowing full well, some of it has prion disease)
Sitting at the tail end of this disease isn't pretty, and having run the gamut from depression to fibromyalgia and now to this, I feel I can speak about this entity. I am going to throw something rather radical out at the forum, hoping reasonable minds prevail, and no one panics, but what if, just what if....this is incurable...kind of like HIV and the best you can do, despite heroic efforts of body and soul(been there, done that), is live and die with it?
By the way, I am an eternal optimist, just very pragmatic. Perhaps just like the medical community...."if you ignore it, maybe it will go away."
quote:Originally posted by 8crow: Do you have any medical abstracts concerning Lyme causing small fiber? I believe my neurologist would look at it. You are right, it will not show on EMG, a skin biopsy HAS to be done. I can tell you I have been through it all in 11 years, and now all the cardiac, gastrointestinal, numbness, tingling, pain, etc all fit together neatly in small fiber neuropathy. I even have global anhidrosis, which is advanced small fiber. And to think it was all in my head for all these years.
I am the walking, talking, medically literate illustration of what happens with Lyme. I was never given IV antibiotics. I did have tons of orals over the years, and at this point, given my small fiber status, I would not take Flagyl (metrodiazanole) again, as small fiber can be caused by it. As a matter of fact, I am leery of any drug ending in 'anole'. Fortunately I can rule out Flagyl as the cause, as I was sick way before I took it...but people need to be aware of the effects of that drug, as well as the benefits. (Just like chemo)
So the medical community is still at a loss as to why I have this, seeing that I am not diabetic, don't drink alcohol, don't appear to have amyloidosis, or a hereditary sensory neuropathy and have been a competitive age class athlete well into my life. I was in a car accident many years ago, and that could have caused it....but the Lyme, nope, not that.
I was a definite deer tick bite ('94), EM rash, rising titers aborted by treatment with too little amox. Lyme never entered my mind again after the initial amox, because, I was 'cured'.... and then negative titers, except on the LLMDs test...can't remember if it was Igenex or some other one that has different standards than any clinic in my state uses....I feel I had an adequate amount of oral antibiotics in 2000. I never got IV, and that might have been the problem to start with, seeing as it is my peripheral nervous system which is shot, (and pretty well, shot to hell, by the way). "Peripheral" makes it sound so unimportant, until you consider your heart beat is 'peripheral' and so is maintaining your blood pressure, body temperature and bowel and bladder control, not to mention making sweat,spit, tears, and other minutia of daily life ...this has been a real adventure trying to do this all myself, while maintaining a job, lol...talk about "multitasking." Well, now I am too sick to do much but sit on my stability ball, and walk. At least my dogs still like me.
Anyway, it is evident, that I am going to 'live' somewhat impaired, for a somewhat 'indefinite' time....and die of something 'other' than lyme (hey, I did raise a bunch of great kids, accomplish a few athletic feats over the last few years and even opened a business) but, this is catching up on me.
I actually have a neurologist I adore and respect. I can tell you I am not going to go the antibiotic route anymore.....my CSF even came back negative...so they say no active lyme.....I honestly don't think I could live through any more abx. Besides nerve regrowth is rare. At best, I could perhaps talk them into long term tetracycline, but even then, I would have to weigh the risk against my nutritional status.
You know, I consider myself fortunate for having been diagnosed with an 'acceptable' disease like small fiber neuropathy, actually my diagnosis is a bit more dramatic with 'autoimmune autonomic neuropathy'....at least I get the IVIG, and NOW they believe me when I say I am sick. The autonomic part is very scary though, having an untrained heart rate of 46 or so and a blood pressure that does what it pleases....not to mention the incessant pain, which has never gone away since '94.
I hate to say this, but could you imagine the public panic if they knew you could get this sick from this disease? My personal opinion is, Lyme will never be acknowledged as the cause of all of this because the cost to insurance companies and the government would be astronomical....so they let some of us die from this and call it something else....it keeps the public panic down. (Just like the mad cow crap...and I don't mean to sound paranoid, because I eat beef, knowing full well, some of it has prion disease)
Sitting at the tail end of this disease isn't pretty, and having run the gamut from depression to fibromyalgia and now to this, I feel I can speak about this entity. I am going to throw something rather radical out at the forum, hoping reasonable minds prevail, and no one panics, but what if, just what if....this is incurable...kind of like HIV and the best you can do, despite heroic efforts of body and soul(been there, done that), is live and die with it?
By the way, I am an eternal optimist, just very pragmatic. Perhaps just like the medical community...."if you ignore it, maybe it will go away."
Posts: 5 | From MA | Registered: Aug 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic