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Could it be Lyme?
Hi all,
I have been having strange symptoms for quite some time now, and I'm wondering if it could be Lyme-related.
I'm unsure if they are related at all, but I have been getting strange skin rashes for about 3 years now. They usually flare up once or twice a year and subside in about 10 days. They're always diagnosed as allergies, but I recently had allergy testing and was only reactive with typical outdoor things (pollen, grass, etc).
In February, I started experiencing intense lower back pain and pain in the left leg, which eventually spread to my left arm and right leg, but it is still worst in the left leg. It feels like nerve pains, though recently my left knee has been achey and sore, and my shoulders have also been getting in on that action, though less frequently. I occasionally have nerve pain on the left side of my face, as well. I experience strange parasthesias -- hot/cold sensations, feeling like water is running down my leg.
I had a nerve conduction test that showed nerve damage in the left leg and left arm, and an MRI that was normal excerpt for a single lesion. I was worked up for MS, but given that there was only the single lesion, the doctor recommended I wait to be treated and come back in a few months.
I had a Lyme test done back in March, but I'm not really familiar with the tests for this. This is what the results looked like:
Lyme Disease, EIA W/RFL WB = .77 (negative)
Lyme Disease AB (IGG), WB = Negative, only band 41 was reactive.
Any thoughts?
I have been having strange symptoms for quite some time now, and I'm wondering if it could be Lyme-related.
I'm unsure if they are related at all, but I have been getting strange skin rashes for about 3 years now. They usually flare up once or twice a year and subside in about 10 days. They're always diagnosed as allergies, but I recently had allergy testing and was only reactive with typical outdoor things (pollen, grass, etc).
In February, I started experiencing intense lower back pain and pain in the left leg, which eventually spread to my left arm and right leg, but it is still worst in the left leg. It feels like nerve pains, though recently my left knee has been achey and sore, and my shoulders have also been getting in on that action, though less frequently. I occasionally have nerve pain on the left side of my face, as well. I experience strange parasthesias -- hot/cold sensations, feeling like water is running down my leg.
I had a nerve conduction test that showed nerve damage in the left leg and left arm, and an MRI that was normal excerpt for a single lesion. I was worked up for MS, but given that there was only the single lesion, the doctor recommended I wait to be treated and come back in a few months.
I had a Lyme test done back in March, but I'm not really familiar with the tests for this. This is what the results looked like:
Lyme Disease, EIA W/RFL WB = .77 (negative)
Lyme Disease AB (IGG), WB = Negative, only band 41 was reactive.
Any thoughts?
"That site says that tests are not available for NY "
Perhaps you mis-read the info at Igenex?
"Panel 6050 #230 (Lyme IFA), #188, #189, #456, and #453
The Initial Lyme Panel: (Use for NY Residents) includes IgG and IgM Western Blots and PCR (whole blood and serum)"
Here's another site to read---- might have some information in it for you. It explains the difference between the CDC criteria (which you had at Quest)
and how Igenex tests.
http://www.igenex.com/labtest.htm
Lyme definitely exists in FL. As it does in all the rest of the states, regardless of what the CDC or a doctor who knows nothing about Lyme (or believes what the CDC says about it).
A rash that comes and goes MIGHT be the EM rash associated with Lyme.
" The rashes can come and go.
Will a rash caused by Lyme Disease disappear without treatment?
Yes, it will often disappear without treatment but may resurface as a single rash or multiple rashes."
http://www.childrenslymenetwork.org/faq/
[Oddly enough I go to the site above often for simple information. Dr. Jones the famous pedo Lyme doctor is medical adviser which is why I trust it.]
Your mention of studying in Europe intrigued me. The strains for Lyme in Europe are different that in the US. Although those boundaries are becoming a little blurred. IF you were infected there the tests performed in the US probably won't pick them up.
The rash for Lyme is called an EM (erythema migrans).
"Where does an erythema migrans develop?
Normally at the location of he tick bite, but it can also develop at other sites, and sometimes there can be multiple at the same time, when the bacterium has disseminated (spread) throughout the body. An erythema migrans can also reappear.
How quickly does an erythema migrans arise?
Usually within a a few days to several weeks, but sometimes even after months."
''EVEN AFTER MONTHS''
So that doesn't rule out you picking up Lyme disease in Europe. That's IF you have Lyme disease! (I have to emphasize that!)
Perhaps you mis-read the info at Igenex?
"Panel 6050 #230 (Lyme IFA), #188, #189, #456, and #453
The Initial Lyme Panel: (Use for NY Residents) includes IgG and IgM Western Blots and PCR (whole blood and serum)"
Here's another site to read---- might have some information in it for you. It explains the difference between the CDC criteria (which you had at Quest)
and how Igenex tests.
http://www.igenex.com/labtest.htm
Lyme definitely exists in FL. As it does in all the rest of the states, regardless of what the CDC or a doctor who knows nothing about Lyme (or believes what the CDC says about it).
A rash that comes and goes MIGHT be the EM rash associated with Lyme.
" The rashes can come and go.
Will a rash caused by Lyme Disease disappear without treatment?
Yes, it will often disappear without treatment but may resurface as a single rash or multiple rashes."
http://www.childrenslymenetwork.org/faq/
[Oddly enough I go to the site above often for simple information. Dr. Jones the famous pedo Lyme doctor is medical adviser which is why I trust it.]
Your mention of studying in Europe intrigued me. The strains for Lyme in Europe are different that in the US. Although those boundaries are becoming a little blurred. IF you were infected there the tests performed in the US probably won't pick them up.
The rash for Lyme is called an EM (erythema migrans).
"Where does an erythema migrans develop?
Normally at the location of he tick bite, but it can also develop at other sites, and sometimes there can be multiple at the same time, when the bacterium has disseminated (spread) throughout the body. An erythema migrans can also reappear.
How quickly does an erythema migrans arise?
Usually within a a few days to several weeks, but sometimes even after months."
''EVEN AFTER MONTHS''
So that doesn't rule out you picking up Lyme disease in Europe. That's IF you have Lyme disease! (I have to emphasize that!)
Actually, I just also remembered that my dog was treated for Lyme last year. He was never officially diagnosed but was having strange neurological symptoms, and responded well to Lyme treatment.
I live in Fl and yes, Lyme exists here. I am in a huge Fl lyme support Group on Facebook.
It should be noted, however, that the first time the weird rash showed up, I had just returned home from studying abroad and was living with my parents in Florida. I frequently walked my dog in the woods and through tall grass, and we have found ticks on him several times, so it's definitely a possibility, though I know the southeast is less affected than other areas of the country (if at all? I'm not super educated about this, obviously).
Thanks for the reply. That site says that tests are not available for NY Residents -- oh boy. Probably the same ******** that they instituted against the herpes Western Blot, as well.
Cost is going to be the biggest factor here, obviously. I've sunk so much into herpes testing that I'm basically maxed for the time being.
I was bitten a couple of times in childhood, but I don't have any specific memory recently of being bitten. Ditto the classic "bulls eye" rash. Like I said, I've had some other strange rashes, but none that looked like the classic presentation.
Yeah, at this point, they haven't completely ruled out MS, but the presentation is not typical for that, and I never really bought it as a viable option (presenting with pain vs. optic neuritis, bilateral pain, etc). Herpes is still a consideration in my mind considering many of my parasthesias have been genital, but I've tested negative so many times (and so has my partner) that it's getting hard to sustain that belief.
Is there a place to find a good Lyme doc in my area? I assume there have to be some in NYC.
Cost is going to be the biggest factor here, obviously. I've sunk so much into herpes testing that I'm basically maxed for the time being.
I was bitten a couple of times in childhood, but I don't have any specific memory recently of being bitten. Ditto the classic "bulls eye" rash. Like I said, I've had some other strange rashes, but none that looked like the classic presentation.
Yeah, at this point, they haven't completely ruled out MS, but the presentation is not typical for that, and I never really bought it as a viable option (presenting with pain vs. optic neuritis, bilateral pain, etc). Herpes is still a consideration in my mind considering many of my parasthesias have been genital, but I've tested negative so many times (and so has my partner) that it's getting hard to sustain that belief.
Is there a place to find a good Lyme doc in my area? I assume there have to be some in NYC.
I had a long reply and lost it!!! Arggh! Now I'll just make a short one and get back to you tomorrow. This are just bullet points and I'll explain them fully tomorrow,
1. Unless you're extremely lucky you won't find an ID doctor who will treat for Lyme (if you indeed have it) in the best way.
2. Your present neuro doc is a member of the AAN which is pretty much the same as being an ID doc and usually useless for Lyme.
3. Igenex is the best (the only) lab for Lyme.
http://www.igenex.com/Website/
But the tests are much more than $200, sorry to say.
4. Most important! Do you remember ever being bitten by a tick?
I have to remember that you may not have Lyme. We have a bit of tunnel vision here about Lyme---- and usually we're right----- but there ARE conditions other than Lyme. But since so many other things have already been ruled out-----if it were me I'd continue to investigate Lyme.
Talk to you later.
1. Unless you're extremely lucky you won't find an ID doctor who will treat for Lyme (if you indeed have it) in the best way.
2. Your present neuro doc is a member of the AAN which is pretty much the same as being an ID doc and usually useless for Lyme.
3. Igenex is the best (the only) lab for Lyme.
http://www.igenex.com/Website/
But the tests are much more than $200, sorry to say.
4. Most important! Do you remember ever being bitten by a tick?
I have to remember that you may not have Lyme. We have a bit of tunnel vision here about Lyme---- and usually we're right----- but there ARE conditions other than Lyme. But since so many other things have already been ruled out-----if it were me I'd continue to investigate Lyme.
Talk to you later.
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