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Parethesias
I recently began to have parethesia that literally jumps from one limb to the other. It can be in the same limb at the same time or one limb at a time. It always seems to be in a different place within the limb. I have period itching of the palms as well. I have seen a neurologist and had an MRI come back negative. At first I thought MS, but symptoms of MS do not typically "jump." I grew up in WI and have spent a lifetime in the woods. I'm wondering if I should push for a Lymes test. Do these symptoms sound close to those of lymes?
Before I was diagnosed with Chronic Lyme disease I had surgery on each knee to repair cartilage damage. After surgery the Lyme disease came out in full force, main debilitating issue (besides my knees I realized after diagnosis!) was peripheral neuropathy/paresthesia. I went for many visits to my GP, who then referred me to a neurologist, along with chiro and physiotherapist. None of them put together the symptoms as being Lyme disease, nor did my 2 ortho surgeons. If a neurologist can't rule out Lyme disease (mine did nerve conduction test and MRI, then tried to tell me it was from stress!), then you definitely should look in to the possibility of Lyme disease. When I started searching for the cause of my painful nerve issues and came across Dr. Burrascano's symptom list, I realized what the cause of my issues were. From there I did Igenex testing (convinced my GP to sign the lab) and then saw a LLMD and LLND.
Symptoms can vary from person to person. Here's a link that gives you an idea of some of the symptoms and how varied they can be. Good luck to you!
http://www.tiredoflyme.com/symptoms1.html#.VBThI9yx9Xe
Symptoms can vary from person to person. Here's a link that gives you an idea of some of the symptoms and how varied they can be. Good luck to you!
http://www.tiredoflyme.com/symptoms1.html#.VBThI9yx9Xe
PS the usual tests given -- Western blot and ELISA -- are not great, but are still useful, if you've already had them done. Get and keep copies of all such tests for your own file, and give a copy to your new doc.
Welcome to MedHelp -- glad to help however we can.
Lyme has many possible symptoms that show up differently in everyone. That's partly why the docs are often so confused: they are accustomed to people who show up with a regular set of symptoms for other diseases, but Lyme doesn't play by those rules. Points to you for even thinking of Lyme!
The good news is, Lyme is treatable and there are goods docs who understand it all. The bad news is, these wise docs are hard to tell from the clueless docs who believe that Lyme is rare (it's not), hard to get (no) and easy to get rid of with a couple weeks of doxycycline (true, but only if you've just been infected very recently), and the clueless docs also don't take into account the fact that maybe half the 'Lyme' ticks also carry completely different infections along with the Lyme. These 'bonus' diseases need different testing and often different medication from Lyme.
The most logical docs to consult -- infectious disease, neurology, rheumatology -- unfortunately too often have a huge blind spot when it comes to considering Lyme as a possible cause of illness. Lyme is a relatively new disease that has and is spreading everywhere very quickly, and docs are not known for recognizing such things, so they default to diseases they already know about.
But even if they recognize Lyme, these docs also believe that a couple weeks of doxycycline antibiotics will cure what ails you, and if you still have symptoms after that, it's called 'post-Lyme syndrome', meaning that the infection is gone but you continue to have phantom symptoms, like a previously broken leg will ache in cold weather.
Uh, wrong. Lyme has spread SO fast across the continent that docs are not keeping up, and the senior docs who first 'discovered' Lyme are still in positions of authority in the medical schools and the medical profession.
Whether you have Lyme, I don't know -- but I would definitely find a Lyme specialist for a work up. Lyme won't go away by itself, and while for some it is a dragging annoyance, for others it is incapacitating.
Lyme seems to park itself in different parts of the body: some of us have more joint trouble, but our heads (and therefore thought process) are clear. Others have it the other way around. Then throw in one or more of the common co-infections the 'Lyme' ticks also carry (with their own set of symptoms) in and the whole diagnostic picture is a mess. No wonder docs are confused.
The docs who are least likely to understand Lyme are the same docs we would normally run to for what we have but don't yet have a diagnosis for. Those docs are often infectious disease MDs and neurologists. These docs already have their medical play books, and they've been using them for decades, so why switch now. Why? because Mother Nature is tricky. A few decades ago, there was no such thing as AIDS either.
To answer your question, YES, I would get tested for Lyme and possible co-infections the ticks also carry. The problem is that your current docs will not see things any differently than they already have, and even if they have the wit to agree to a Lyme test, they may misunderstand it and still tell you you don't have Lyme.
(True story: I was seeing my 20th doc for a diagnosis when I was ill, and because I had been tested for everything else, Dr #20 tested me for Lyme. The test was positive!!! But the doc said gently, "Oh, but you can't possibly have Lyme. I have patients with Lyme, and they are are ... near death." Well, Lyme is not often deadly, but it sure is awful, as you already know. But this is the midset in the medical community: 'Lyme is rare, hard to get and easy to cure.' It's a rapidly spreading disease, it is very easy to get (even for a not-woodsy person like me), and the standard few weeks of doxycycline may not hack it.
In your situation, I would find a Lyme specialist for a work up. Take with you copies of all your medical tests to date, if you have them or can get them without ticking off your current docs (never know when you might need them later for something -- I usually smile and ask the file clerk for copies of all tests done to date 'for my file'). If you can't easily get the copies, not the end of the world.
Most important is to find a Lyme specialist, who can be any kind of MD but is seldom found among infectious disease docs and rheumatologists (who would be the most obvious choices otherwise).
If you send an email to
-- contact [at] ILADS [dot] org --
and tell them where you are ("Near Memphis TN") and about how far you can travel, they can send you names of MDs who are members of the International Lyme and Associated Diseases Society (ILADS), which is the main voluntary group for MDs who truly understand Lyme and its co-infections that come along for the ride.
There is no test to be a Lyme specialist, and to differentiate them from docs who don't understand Lyme, we patients call the good guys 'Lyme-literate MDs', or LLMDs for short. No doc uses that term, it's just a handy label for us out here.
I was very cautious about telling my other MDs that I was being treated with long term antibiotics (meaning ~ 6 months), because nonLLMDs tend to think that LLMDs are quacks. The main exception was my ophthalmologist [eye MD], who sat up straight when I sort of apologized for seeing an LLMD, and he said 'Oh, don't apologize! Lyme is serious.' So there are islands of some specialties where Lyme is understood, but it's hit and miss. fwiw.
Many LLMDs don't take insurance, to lessen the arguments from the insurance companies about the long term antibiotics being prescribed. But oddly enough, if you pay the LLMD out of pocket and then submit the receipt for reimbursement, the insurance companies almost always pay you back for a big chunk of what you paid the LLMD and also pay for the meds, no hassle there. I could speculate on why that is, but who cares. The important thing is getting well.
Okay, I've rattled on too long, but I hope it helps. Mull this over and let us know if you have any questions. If you would like to know if any of us know of a good LLMD near where you live, you can post a new message on this site, titled 'Need LLMD near Memphis TN' or wherever you are, and we can send you back through a private message on this site recommendations of any LLMDs we like. We do NOT post names of LLMDs here in the open, because in some states, the local docs don't like the competition from the LLMDs and try to get their medical licenses lifted. It's petty politics, but private messages here are the way to get around it and protect our LLMDs.
This is probably too long for one post, so look for the continuation below. No time to proof read, sorry for errors. Let us know how we can help. We've all been where you are.
Lyme has many possible symptoms that show up differently in everyone. That's partly why the docs are often so confused: they are accustomed to people who show up with a regular set of symptoms for other diseases, but Lyme doesn't play by those rules. Points to you for even thinking of Lyme!
The good news is, Lyme is treatable and there are goods docs who understand it all. The bad news is, these wise docs are hard to tell from the clueless docs who believe that Lyme is rare (it's not), hard to get (no) and easy to get rid of with a couple weeks of doxycycline (true, but only if you've just been infected very recently), and the clueless docs also don't take into account the fact that maybe half the 'Lyme' ticks also carry completely different infections along with the Lyme. These 'bonus' diseases need different testing and often different medication from Lyme.
The most logical docs to consult -- infectious disease, neurology, rheumatology -- unfortunately too often have a huge blind spot when it comes to considering Lyme as a possible cause of illness. Lyme is a relatively new disease that has and is spreading everywhere very quickly, and docs are not known for recognizing such things, so they default to diseases they already know about.
But even if they recognize Lyme, these docs also believe that a couple weeks of doxycycline antibiotics will cure what ails you, and if you still have symptoms after that, it's called 'post-Lyme syndrome', meaning that the infection is gone but you continue to have phantom symptoms, like a previously broken leg will ache in cold weather.
Uh, wrong. Lyme has spread SO fast across the continent that docs are not keeping up, and the senior docs who first 'discovered' Lyme are still in positions of authority in the medical schools and the medical profession.
Whether you have Lyme, I don't know -- but I would definitely find a Lyme specialist for a work up. Lyme won't go away by itself, and while for some it is a dragging annoyance, for others it is incapacitating.
Lyme seems to park itself in different parts of the body: some of us have more joint trouble, but our heads (and therefore thought process) are clear. Others have it the other way around. Then throw in one or more of the common co-infections the 'Lyme' ticks also carry (with their own set of symptoms) in and the whole diagnostic picture is a mess. No wonder docs are confused.
The docs who are least likely to understand Lyme are the same docs we would normally run to for what we have but don't yet have a diagnosis for. Those docs are often infectious disease MDs and neurologists. These docs already have their medical play books, and they've been using them for decades, so why switch now. Why? because Mother Nature is tricky. A few decades ago, there was no such thing as AIDS either.
To answer your question, YES, I would get tested for Lyme and possible co-infections the ticks also carry. The problem is that your current docs will not see things any differently than they already have, and even if they have the wit to agree to a Lyme test, they may misunderstand it and still tell you you don't have Lyme.
(True story: I was seeing my 20th doc for a diagnosis when I was ill, and because I had been tested for everything else, Dr #20 tested me for Lyme. The test was positive!!! But the doc said gently, "Oh, but you can't possibly have Lyme. I have patients with Lyme, and they are are ... near death." Well, Lyme is not often deadly, but it sure is awful, as you already know. But this is the midset in the medical community: 'Lyme is rare, hard to get and easy to cure.' It's a rapidly spreading disease, it is very easy to get (even for a not-woodsy person like me), and the standard few weeks of doxycycline may not hack it.
In your situation, I would find a Lyme specialist for a work up. Take with you copies of all your medical tests to date, if you have them or can get them without ticking off your current docs (never know when you might need them later for something -- I usually smile and ask the file clerk for copies of all tests done to date 'for my file'). If you can't easily get the copies, not the end of the world.
Most important is to find a Lyme specialist, who can be any kind of MD but is seldom found among infectious disease docs and rheumatologists (who would be the most obvious choices otherwise).
If you send an email to
-- contact [at] ILADS [dot] org --
and tell them where you are ("Near Memphis TN") and about how far you can travel, they can send you names of MDs who are members of the International Lyme and Associated Diseases Society (ILADS), which is the main voluntary group for MDs who truly understand Lyme and its co-infections that come along for the ride.
There is no test to be a Lyme specialist, and to differentiate them from docs who don't understand Lyme, we patients call the good guys 'Lyme-literate MDs', or LLMDs for short. No doc uses that term, it's just a handy label for us out here.
I was very cautious about telling my other MDs that I was being treated with long term antibiotics (meaning ~ 6 months), because nonLLMDs tend to think that LLMDs are quacks. The main exception was my ophthalmologist [eye MD], who sat up straight when I sort of apologized for seeing an LLMD, and he said 'Oh, don't apologize! Lyme is serious.' So there are islands of some specialties where Lyme is understood, but it's hit and miss. fwiw.
Many LLMDs don't take insurance, to lessen the arguments from the insurance companies about the long term antibiotics being prescribed. But oddly enough, if you pay the LLMD out of pocket and then submit the receipt for reimbursement, the insurance companies almost always pay you back for a big chunk of what you paid the LLMD and also pay for the meds, no hassle there. I could speculate on why that is, but who cares. The important thing is getting well.
Okay, I've rattled on too long, but I hope it helps. Mull this over and let us know if you have any questions. If you would like to know if any of us know of a good LLMD near where you live, you can post a new message on this site, titled 'Need LLMD near Memphis TN' or wherever you are, and we can send you back through a private message on this site recommendations of any LLMDs we like. We do NOT post names of LLMDs here in the open, because in some states, the local docs don't like the competition from the LLMDs and try to get their medical licenses lifted. It's petty politics, but private messages here are the way to get around it and protect our LLMDs.
This is probably too long for one post, so look for the continuation below. No time to proof read, sorry for errors. Let us know how we can help. We've all been where you are.
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