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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?
I sounds as if you might have Lyme disease but those symptoms could also be from other conditions.
However, your lab test looks as if it were done at a CDC sanctioned lab (maybe Quest?) Those labs use tests that have been said to be about 50% in error, towards either pos. or neg.
If you're comfortable with giving us more information------ the name of your doctor (ONLY if you're comfortable!) or the city/state you live in perhaps more suggestions can be offered.
Igenex is usually the lab that most (Lyme) knowledgeable doctors send lab work to.
Hope to hear from you.
However, your lab test looks as if it were done at a CDC sanctioned lab (maybe Quest?) Those labs use tests that have been said to be about 50% in error, towards either pos. or neg.
If you're comfortable with giving us more information------ the name of your doctor (ONLY if you're comfortable!) or the city/state you live in perhaps more suggestions can be offered.
Igenex is usually the lab that most (Lyme) knowledgeable doctors send lab work to.
Hope to hear from you.
Hi, your symptoms could very well be Lyme. I have Bartonella, a co-infection of Lyme and had several lesions which were misdiagnosed as MS first.
I was misdiagnosed with other illnesses too because Lyme is the great pretender. It wasn't until I found an LLMD (Lyme literate Doc) that I found out I had Lyme. LLMD use a lab called IgeneX that is a more sensitive lab that most LLMD use.
If you want more information you can go to ILADS.org (lyme association) and read some of the articles especially Burascano's treatment guidelines which mentions signs and symptoms of Lyme and co-infections.
I am sure you will have more questions and we will be glad to answer.
I was misdiagnosed with other illnesses too because Lyme is the great pretender. It wasn't until I found an LLMD (Lyme literate Doc) that I found out I had Lyme. LLMD use a lab called IgeneX that is a more sensitive lab that most LLMD use.
If you want more information you can go to ILADS.org (lyme association) and read some of the articles especially Burascano's treatment guidelines which mentions signs and symptoms of Lyme and co-infections.
I am sure you will have more questions and we will be glad to answer.
Thanks for the comment! I've been worked up and down and have a few interesting findings -- the brain lesion, the nerve damage from the nerve conduction study, vitamins on the low side though not TECHNICALLY deficient (I think the cutoff for B12 deficiency is like, 230 and mine was 258), but no other infections findings. I've been pursuing herpes as a cause, but the longer the pain lasts and the more it affects my arms and face, the less likely I think it is.
Yes, the tests were run through a Quest Diagnostics lab. I'm located in New York City, and these tests were run as part of a large neurological workup by Dr. Ramon Valderrama in midtown. He is just a general neurologist, not a specialist of any kind. Would seeing an ID doc at this stage be called for?
Someone else had made mention of the Igenex WB, and said it usually costs in the realm of $200? Do you have any other information about cost or how to obtain it?
Yes, the tests were run through a Quest Diagnostics lab. I'm located in New York City, and these tests were run as part of a large neurological workup by Dr. Ramon Valderrama in midtown. He is just a general neurologist, not a specialist of any kind. Would seeing an ID doc at this stage be called for?
Someone else had made mention of the Igenex WB, and said it usually costs in the realm of $200? Do you have any other information about cost or how to obtain it?
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.
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.
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).
I live in Fl and yes, Lyme exists here. I am in a huge Fl lyme support Group on Facebook.
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.
"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."
Have to smile, ironically! Yesterday I was reading articles/comments by veterinarians about Lyme disease. Bottom line---- vets aren't involved in this nasty war about Lyme that doctors are. They treat, the animal gets better. If not, they treat again. No persecutions of vets that treat often and long!
I went to a site:
http://www.capcvet.org/parasite-prevalence-maps/
[about Lyme in dogs]
The HUGE irony about that map is the high risk shown for Lyme in OR for dogs!
While a human can't find a doctor that will treat longer than 10-30 days and only if they have a bulls eye! I know that for a fact!
Maybe Oregonians should grow shaggy hair and long tails!
{I'm glad your dog is better}
Wow, so much information.
How can I find a decent Lyme doctor in the city? I've seen things about how many of them don't take insurance, etc, so I'm assuming again that this will be costly.
Do you know the approximate cost of the tests that would be ordered for a case like mine? I'm completely overwhelmed here, and have no idea how to proceed.
How can I find a decent Lyme doctor in the city? I've seen things about how many of them don't take insurance, etc, so I'm assuming again that this will be costly.
Do you know the approximate cost of the tests that would be ordered for a case like mine? I'm completely overwhelmed here, and have no idea how to proceed.
You think THAT'S a lot of information??? LOL Just started---- and not just because I'm gabby but because Lyme and co-infections (which we haven't even touched yet!) is so very complicated. Complicated even more because of the Lyme Wars.
Back to your main quest------ a good Lyme doctor: One of the best just re-opened his practice in CT. Yeah, I know, not in NY but not that far from it.
I imagine he already has a long waiting list but I'd put my name on it while exploring other doctors
http://www.theridgefieldpress.com/20415/lyme-disease-doctor-dancing-veterans-bank-executive/
While you're waiting---- please pick up a copy of Cure Unknown by Pam Weintraub and read the best book there is about Lyme. She researched, verified and double verified everything she wrote as the responsible writer she is should do.
Her web site is http://www.astralgia.com/f
This web site that gives the telephone numbers of many support groups in NY might be a resource for you and might have the name of a good Lyme specialist:
http://www.empirestatelymediseaseassociation.org/
But it's a form of 'buyer beware' that I have to warn you that there are many Lyme specialists that I wouldn't send anyone to. You would have to ask a person who has no agenda except for science-based medicine. Unless, of course, you want to be treated by some rather ineffective methods (in my opinion of course---- that's MY agenda!)
Back to your main quest------ a good Lyme doctor: One of the best just re-opened his practice in CT. Yeah, I know, not in NY but not that far from it.
I imagine he already has a long waiting list but I'd put my name on it while exploring other doctors
http://www.theridgefieldpress.com/20415/lyme-disease-doctor-dancing-veterans-bank-executive/
While you're waiting---- please pick up a copy of Cure Unknown by Pam Weintraub and read the best book there is about Lyme. She researched, verified and double verified everything she wrote as the responsible writer she is should do.
Her web site is http://www.astralgia.com/f
This web site that gives the telephone numbers of many support groups in NY might be a resource for you and might have the name of a good Lyme specialist:
http://www.empirestatelymediseaseassociation.org/
But it's a form of 'buyer beware' that I have to warn you that there are many Lyme specialists that I wouldn't send anyone to. You would have to ask a person who has no agenda except for science-based medicine. Unless, of course, you want to be treated by some rather ineffective methods (in my opinion of course---- that's MY agenda!)
About the costs of tests from Igenex----- Since my insurance always paid for them I didn't 'worry' about the cost----- and those were a long time ago anyway. And btw---- I was always negative! But I started treatment anyway because of 'high suspicion'. Which was later proved correct via lumbar puncture/spinal tap. I'M NOT ADVISING PEOPLE TO GET A LUMBAR PUNCTURE! Just saying I got 'lucky' and got a positive after just one.
The best way is to call Igenex---- they have an 800 number and I've always found that they are willing to give information over the phone.
Nick Harris, owner, has always, in the past, been willing to talk to people when he's in and when he has the time. But some technical info can be given by the lab manager also.
Labs are forbidden by law to give treatment advice, I'm sure you know.
The best way is to call Igenex---- they have an 800 number and I've always found that they are willing to give information over the phone.
Nick Harris, owner, has always, in the past, been willing to talk to people when he's in and when he has the time. But some technical info can be given by the lab manager also.
Labs are forbidden by law to give treatment advice, I'm sure you know.
Thanks again for all of the info -- wading through it slowly but surely! I obviously have a lot of reading to do, but it seems like some of my symptoms are certainly consistent, so I feel like it's worth pursuing.
I spoke to Igenex, and it seems like the first step is finding a doctor willing to requisition the tests for me, so I'll do my best to find an appropriate doctor.
I'll be sure to let you know if I have any other questions, and I'll try to follow up here if anything comes of it, but who knows how long it will be before I can actually be seen, etc.
I spoke to Igenex, and it seems like the first step is finding a doctor willing to requisition the tests for me, so I'll do my best to find an appropriate doctor.
I'll be sure to let you know if I have any other questions, and I'll try to follow up here if anything comes of it, but who knows how long it will be before I can actually be seen, etc.
Best of luck to you----- and I'm happy to see you're being active in your search.
If you've found a doctor you think might work, would you please private message me? There are Lyme doctors and then there are Lyme doctors, if you know what I mean. Although I don't live on the East coast I have tentacles everywhere with other science based thinkers. (grin)
p.s. One of my unfinished projects is to post a thread about why the term LLMD is becoming less and less the gold standard than it was 'back in the day' when they were regarded as our saviors. There are still many doctors who still deserve that nick-name but there are almost as many who do not, in my opinion.
The same is happening with the moniker ' an ILADS doctor'. But that does NOT detract from the web site and it's worth----- just with the types of doctors that can now say, truthfully, "I'm an ILADS member".
If you've found a doctor you think might work, would you please private message me? There are Lyme doctors and then there are Lyme doctors, if you know what I mean. Although I don't live on the East coast I have tentacles everywhere with other science based thinkers. (grin)
p.s. One of my unfinished projects is to post a thread about why the term LLMD is becoming less and less the gold standard than it was 'back in the day' when they were regarded as our saviors. There are still many doctors who still deserve that nick-name but there are almost as many who do not, in my opinion.
The same is happening with the moniker ' an ILADS doctor'. But that does NOT detract from the web site and it's worth----- just with the types of doctors that can now say, truthfully, "I'm an ILADS member".
I reached out to ILADS re: LLMDs in my area, and I also called the CT doc you recommended. We'll see what happens.
I assume that most of the (good) docs are versed in the testing, and would recommend IgeneX to do further testing?
I assume that most of the (good) docs are versed in the testing, and would recommend IgeneX to do further testing?
When you get information back about the doctors-- please Private Message me. Or post them here, for what good is information if it's just passed between 2 people? It's up to you.
I can pretty much guarantee that a (good) llmd would only use Igenex. There's none comparable in the US. now that MDL has 'gone to the dark side".
I can pretty much guarantee that a (good) llmd would only use Igenex. There's none comparable in the US. now that MDL has 'gone to the dark side".
Just as an update -- I have an appointment with the doctor you recommended in Connecticut in a couple of months!
YIPPEE! And good for you for following up. At least now you''ll know you'll be getting the best of care.
And here's some great reading from a power point presentation from him:
http://www.ilads.org/lyme_research/chronic_lyme.html
http://www.ilads.org/lyme_research/chronic_lyme.html
ny state doctors can not use igenex test its banned there by state law
u have to go out of state for blood draw and treatment if you use the test for treatment and fyi the pcr whole blood is a waste of money just do the western blot igg igm its 200 bucks I did it a few months ago
u have to go out of state for blood draw and treatment if you use the test for treatment and fyi the pcr whole blood is a waste of money just do the western blot igg igm its 200 bucks I did it a few months ago
that doc in ct is 800 first visit and insurance wont pay for it he doesn't even accept ins at all your ins will pay for scripts that's it . ive been on this roller coaster its very costly both mind and wallet
good luck to you
good luck to you
Shadow----- I'd like to correct the information that you gave to people about New York and testing through Igenex, with respect but in the interest of giving correct information.
From the Igenex web site:
"The Initial Lyme Panel: (Use for NY Residents) includes IgG and IgM Western Blots and PCR (whole blood and serum):"
http://www.igenex.com/Website/
And the PCR, no matter what a person believes about it's worth, is FREE.
"(IGeneX performs a courtesy PCR on whole blood in the above panels)" as a careful reading of the Igenex web site will show.
From the Igenex web site:
"The Initial Lyme Panel: (Use for NY Residents) includes IgG and IgM Western Blots and PCR (whole blood and serum):"
http://www.igenex.com/Website/
And the PCR, no matter what a person believes about it's worth, is FREE.
"(IGeneX performs a courtesy PCR on whole blood in the above panels)" as a careful reading of the Igenex web site will show.
Almost every good llmd doesn't accept insurance. The reason is very simple---- by not having to jump through all the hoops that an insurance company puts up the llmd is free to prescribe the treatment s/he feels best---- NOT just the one a person's ins. company will allow--- sometimes just 30 days of an antibiotic when the doctor and patient feel that much longer tx is needed.
You said "your ins will pay for scripts".
Yes. According to the ins. reimbursement schedule. Each persons ins. is different.
Every llmd I know of that wants payment up front, as you said the CT doc did----- and that's most of them----- gladly give you some sort of "invoice" that the patient can then send to their insurance company for reimbursement according to that insurance company's reimbursement schedule.
That reimbursement may not be the entire amount again, DEPENDING ON THE PERSON'S INS.
If a person has a crappy ins. company (Lyme wise) then the payments will be crappy.
Always, when going to a doctor who wants payment up front, ask for that invoice and then mail it in. (It should include a dx code and a procedure code on it.)
A good llmd, as the one in CT is, will know what to do.
You said "your ins will pay for scripts".
Yes. According to the ins. reimbursement schedule. Each persons ins. is different.
Every llmd I know of that wants payment up front, as you said the CT doc did----- and that's most of them----- gladly give you some sort of "invoice" that the patient can then send to their insurance company for reimbursement according to that insurance company's reimbursement schedule.
That reimbursement may not be the entire amount again, DEPENDING ON THE PERSON'S INS.
If a person has a crappy ins. company (Lyme wise) then the payments will be crappy.
Always, when going to a doctor who wants payment up front, ask for that invoice and then mail it in. (It should include a dx code and a procedure code on it.)
A good llmd, as the one in CT is, will know what to do.
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