Aa
Lyme? Neuro says MS
Hello! I hope everyone is doing well!
I was wondering if I could get some insight on my symptoms compared to those who are known to have Lyme. I went to a Neuro in April with a number of symptoms developing the months and years prior that I had ignored, but it finally became to much and too obvious that something was wrong.
I've past years I've had, what I think to be L'hermittes or some kind of shocking going down my neck, a few weeks of the room spinning when stood up, seeing lights in my peripheral.
In the past few months I've developed:
-toes on the left foot twitching or moving on their own
-weird, vibrating feelings in my left leg
-muscle cramps/spasms in almost all of my muscles, mainly on left, but also right side
-strong stinging sensation that feel like a bug bite but nothing is there, only last a few seconds, sometimes they pulse
-small areas on my nose, bottom lip and above eye, also on my arm and legs that feel like they're being touched, or rubbed really gently, weird. In my scalp, too. Usually in the same places, repeatedly.
-muscle jerks, mainly legs when I'm resting
-lots of floaters, or just floaters that I notice much more than in the past
-extreme weakness- all over. Can't walk for long periods of time or I need to sit. It's hard to do simple things like scramble eggs (for like a minute?!? Ugh.) without whatever muscle I'm using hurting or just refusing to go any longer.
-extreme fatigue- I now take a nap almost everyday and sleep a good 10-12 hours a night as well. And even when I'm up I have to take breaks.
-I've had heart palpitations as well- which I've mainly noticed when I take a deep breath.
Most recently: my hands have started to shake or tremor. Only when I'm 'using' them, or holding tension in them. It's much worse after doing a lot with them, cleaning etc. and even worse after a hot shower, where all my symptoms act up after and I feel totally shakes in the inside for like an hour til I cool off.
-etc. I'm sure im forgetting some things, so many things have been going on.
Neuro exam:
-left sided Babinskis and hyperreflexes
-right side optic disc sweeping
Tests:
-MRIs came back fine (brain and spine with and without contrast)
-Evoked potentials on my eyes came back normal
-Neuro still thinks MS even though I don't have lesions and is sending me to UVA to a MS specialist.
-B-12 and Vitamin D were fine on blood tests
-I had positive ANA but negative DNA for Lupus and negative S'jorgens test
-I believe my doc used the Elisa to test for Lyme which came back as .25 (negative?)
I'm gonna ask her for a Western Blot and see what that says- thought I know they're not reliable.
Any thoughts or advice on what I should do or if my symptoms sounds like Possible Lyme? I feel worse by the day for the most part and the hand tremors are getting worse. They've been creeping on for months and are just now to the point where they're there almost all the time when I move my hands.
Thank you for anyone who reads all this! I'm sorry I wrote a dissertation! ;)
I was wondering if I could get some insight on my symptoms compared to those who are known to have Lyme. I went to a Neuro in April with a number of symptoms developing the months and years prior that I had ignored, but it finally became to much and too obvious that something was wrong.
I've past years I've had, what I think to be L'hermittes or some kind of shocking going down my neck, a few weeks of the room spinning when stood up, seeing lights in my peripheral.
In the past few months I've developed:
-toes on the left foot twitching or moving on their own
-weird, vibrating feelings in my left leg
-muscle cramps/spasms in almost all of my muscles, mainly on left, but also right side
-strong stinging sensation that feel like a bug bite but nothing is there, only last a few seconds, sometimes they pulse
-small areas on my nose, bottom lip and above eye, also on my arm and legs that feel like they're being touched, or rubbed really gently, weird. In my scalp, too. Usually in the same places, repeatedly.
-muscle jerks, mainly legs when I'm resting
-lots of floaters, or just floaters that I notice much more than in the past
-extreme weakness- all over. Can't walk for long periods of time or I need to sit. It's hard to do simple things like scramble eggs (for like a minute?!? Ugh.) without whatever muscle I'm using hurting or just refusing to go any longer.
-extreme fatigue- I now take a nap almost everyday and sleep a good 10-12 hours a night as well. And even when I'm up I have to take breaks.
-I've had heart palpitations as well- which I've mainly noticed when I take a deep breath.
Most recently: my hands have started to shake or tremor. Only when I'm 'using' them, or holding tension in them. It's much worse after doing a lot with them, cleaning etc. and even worse after a hot shower, where all my symptoms act up after and I feel totally shakes in the inside for like an hour til I cool off.
-etc. I'm sure im forgetting some things, so many things have been going on.
Neuro exam:
-left sided Babinskis and hyperreflexes
-right side optic disc sweeping
Tests:
-MRIs came back fine (brain and spine with and without contrast)
-Evoked potentials on my eyes came back normal
-Neuro still thinks MS even though I don't have lesions and is sending me to UVA to a MS specialist.
-B-12 and Vitamin D were fine on blood tests
-I had positive ANA but negative DNA for Lupus and negative S'jorgens test
-I believe my doc used the Elisa to test for Lyme which came back as .25 (negative?)
I'm gonna ask her for a Western Blot and see what that says- thought I know they're not reliable.
Any thoughts or advice on what I should do or if my symptoms sounds like Possible Lyme? I feel worse by the day for the most part and the hand tremors are getting worse. They've been creeping on for months and are just now to the point where they're there almost all the time when I move my hands.
Thank you for anyone who reads all this! I'm sorry I wrote a dissertation! ;)
Wow, I use to live in northern Va and was going to move to Williamsburg and there were no LLMD any where near there. You are lucky there is one in Roanoke now.
I wish you the best of luck.
I wish you the best of luck.
Greetings -- sounds like you're *busy*!
CD57 is an entirely different kind of test from the IGeneX test -- CD57 is part of the human immune system in ways I cannot begin to explain, because my reading on CD57 pretty much stopped when it was determined a while back that CD57 was not as useful as thought. It was supposed to measure your immune status in some way that would help track how the Lyme infection was responding to treatment [somebody correct me if I'm wrong here], but interest in CD57 has tapered off in recent years because (from what I have read) was not particularly accurate for the task of measuring the immune system status.
I have not any more reading on that aspect of CD57, so your doc is likely more up to date than I (and hey, I'm not a doc!!) and may know some recent development that makes CD57 useful in some other way.
I would ask the doc why no IGeneX testing is being done. As far as I know, it's quite valuable in assessing and treating Lyme, because it is looking in your blood for direct evidence of Lyme, not the indirect evidence that the older ELISA and Western blot tests are measuring.
Others here should chime in on this point too and correct me if I'm wrong. If I'm not wrong, then I would ask the doc why no IGeneX testing. You could say to the doc that you were doing some reading and ran across something about a Lyme test from a lab called IGeneX, and ask her what her opinion of it is. Then see what she says ... and let us know! Always interested in learning more.
Take care --
CD57 is an entirely different kind of test from the IGeneX test -- CD57 is part of the human immune system in ways I cannot begin to explain, because my reading on CD57 pretty much stopped when it was determined a while back that CD57 was not as useful as thought. It was supposed to measure your immune status in some way that would help track how the Lyme infection was responding to treatment [somebody correct me if I'm wrong here], but interest in CD57 has tapered off in recent years because (from what I have read) was not particularly accurate for the task of measuring the immune system status.
I have not any more reading on that aspect of CD57, so your doc is likely more up to date than I (and hey, I'm not a doc!!) and may know some recent development that makes CD57 useful in some other way.
I would ask the doc why no IGeneX testing is being done. As far as I know, it's quite valuable in assessing and treating Lyme, because it is looking in your blood for direct evidence of Lyme, not the indirect evidence that the older ELISA and Western blot tests are measuring.
Others here should chime in on this point too and correct me if I'm wrong. If I'm not wrong, then I would ask the doc why no IGeneX testing. You could say to the doc that you were doing some reading and ran across something about a Lyme test from a lab called IGeneX, and ask her what her opinion of it is. Then see what she says ... and let us know! Always interested in learning more.
Take care --
Hello again! I went to see the LLMD in Roanoke, VA and she took a very thorough history of my life and all symptoms up till now. She is doing a ton of blood work- I had 24 vials taken at the lab! Which felt like a lot. Ha!
So, she's basically testing for a lot of different things. She had me take the VCR test for your eyes which, I think looks for exposure to mold and other toxins. I passed it.
She is doing a panel to look for Bartonella which she said some of my symptoms sounded like and she isn't doing an IGENex test, instead she ordered a CD57-NK test. Does anyone know anything about this and it's usefullness in diagnosing Lyme? I hope everyone is doing well! :)
So, she's basically testing for a lot of different things. She had me take the VCR test for your eyes which, I think looks for exposure to mold and other toxins. I passed it.
She is doing a panel to look for Bartonella which she said some of my symptoms sounded like and she isn't doing an IGENex test, instead she ordered a CD57-NK test. Does anyone know anything about this and it's usefullness in diagnosing Lyme? I hope everyone is doing well! :)
Good for you for getting the doc to order the test. From what I read, the Western blot test is accurate when it's positive, but it may well be *inaccurate* if it's negative, as your test is. (So the lab may not be the problem: it could be the test that is the problem.)
The reason a Western blot (and the separate ELISA test, which some docs also use) can give a false negative result (meaning the test says you are not infected, but you really are infected) is that those tests do not look for the Lyme bacteria, but are looking for your immune system's response to the Lyme bacteria.
Sounds good, but the problem is that Lyme can suppress the reaction of your immune system, so that you can have Lyme but have a *negative* W.blot/ELISA (from what I have read). If you get a positive result on either test, it's considered reliable, but if you get a negative result (as you did), it could well be that your immune system is just not producing antibodies against the Lyme bacteria. Result: the test can say you're not infected with Lyme, but you can indeed be.
There is another test called PCR (short for 'polymerase chain reaction') which is offered by IGeneX Labs. The PCR test doesn't rely on your immune system for a positive result, but instead looks for actual DNA from the Lyme bacteria.
Here's the problem: most regular docs think the W.blot/ELISA tests are good enough, and refuse to use the PCR test. This is, I suspect, the result of the original docs who 'discovered' Lyme disease still being high up in the medical-Lyme community, and who have been using W.blot/ELISA for years and refuse to consider PCR as a better test. Politics and medicine: a nasty combination.
If you ask your current doc to run a PCR test, the doc will probably refuse, because they see no need for it (after all, W.blot/ELISA are good enough in the docs' view). What I would do is find a different MD, one who is a member of ILADS.
The test isn't cheap -- you can check the IGeneX website for pricing, or if they don't post it, call them and ask. They are very nice people to deal with.
You will likely need a doc's order for the tests to be done, which means you need to find a Lyme doc or a sympathetic nonLyme doc to give the test order to have the blood drawn. If there is a Lyme patient group near you, they can guide you to a Lyme doc.
This is a real mess of a situation, I know, and someday it will be sorted out, but in the meantime, just roll with it -- ask friends/family to help you. And let us know how you do, okay?
Take care -- and yes, getting rid of Lyme IS worth all the hassle.
The reason a Western blot (and the separate ELISA test, which some docs also use) can give a false negative result (meaning the test says you are not infected, but you really are infected) is that those tests do not look for the Lyme bacteria, but are looking for your immune system's response to the Lyme bacteria.
Sounds good, but the problem is that Lyme can suppress the reaction of your immune system, so that you can have Lyme but have a *negative* W.blot/ELISA (from what I have read). If you get a positive result on either test, it's considered reliable, but if you get a negative result (as you did), it could well be that your immune system is just not producing antibodies against the Lyme bacteria. Result: the test can say you're not infected with Lyme, but you can indeed be.
There is another test called PCR (short for 'polymerase chain reaction') which is offered by IGeneX Labs. The PCR test doesn't rely on your immune system for a positive result, but instead looks for actual DNA from the Lyme bacteria.
Here's the problem: most regular docs think the W.blot/ELISA tests are good enough, and refuse to use the PCR test. This is, I suspect, the result of the original docs who 'discovered' Lyme disease still being high up in the medical-Lyme community, and who have been using W.blot/ELISA for years and refuse to consider PCR as a better test. Politics and medicine: a nasty combination.
If you ask your current doc to run a PCR test, the doc will probably refuse, because they see no need for it (after all, W.blot/ELISA are good enough in the docs' view). What I would do is find a different MD, one who is a member of ILADS.
The test isn't cheap -- you can check the IGeneX website for pricing, or if they don't post it, call them and ask. They are very nice people to deal with.
You will likely need a doc's order for the tests to be done, which means you need to find a Lyme doc or a sympathetic nonLyme doc to give the test order to have the blood drawn. If there is a Lyme patient group near you, they can guide you to a Lyme doc.
This is a real mess of a situation, I know, and someday it will be sorted out, but in the meantime, just roll with it -- ask friends/family to help you. And let us know how you do, okay?
Take care -- and yes, getting rid of Lyme IS worth all the hassle.
Thank you, Jackie! :) your kind words mean a lot! This process can be so frustrating. I did get my PCP to order a Western Blot and I got the results back today. All negative. Does anyone know anything about Solstas labs? That's who it was done through. Is there still a possibility of having Lyme with negative Elisa and Wetsern Blots? Sorry to bug everyone again. I hope you all are having a good day! :)
Thank you for your kind words -- it really is a group effort here, because each of us brings our experiences both with Lyme and with the medical community.
In one way or another, we've all been where you are, and you and everyone who comes here contributes in very necessary and helpful ways, whether it's with questions and experiences or with suggestions. As time goes by and time permits, you may find yourself showing up just as we do. Welcome to the neighborhood! :)
In one way or another, we've all been where you are, and you and everyone who comes here contributes in very necessary and helpful ways, whether it's with questions and experiences or with suggestions. As time goes by and time permits, you may find yourself showing up just as we do. Welcome to the neighborhood! :)
Thank you again for your amazing response, Jackie. It helped a lot and I am going to make another post here about a LLMD and also email ILADS and see what I can come up with. I'll let you know how everything is going. Thank you! You are a tremendous help! :)
I think you are doing a very good job of gathering data and figuring out a game plan. Lyme can often leave a person so beat down that they can't find a way to structure a search for answers and then make it happen -- but you got grit! That will definitely help you get through all this.
To find a Lyme specialist, there are two things I would do first:
1 -- email to
---- contact [at] ILADS [dot] org ----
and tell them where you are located ('25 miles from Charlottesville VA" or whatever description fits) AND how far you can travel. ILADS can email you back with docs' names near you.
As far as I know, any doc can join ILADS (short for International Lyme and Associated Diseases Society), which is a voluntary group for docs with an interest in Lyme. There is no test that a doc has to take to be a member, as far as I know, so it's possible you can end up seeing some strange doc that really doesn't suit you or doesn't really seem on the ball. You can ask ILADS for another name till you get a doc you are comfortable with.
2 -- Look around online using searches like
--- Virginia Lyme disease ---
and see what you find. You may also find links to local Lyme groups that can be excellent sources of information.
3 -- Post a new question here titled something like "Need LLMD near Charlottesville VA" or whatever area you can get to ("...western VA within 100 miles of Charlottesville"). We do NOT put Lyme docs' names in the open here, because in some states and areas, the Lyme-deniers will try to put a Lyme doc out of business, which is why you don't seen docs' names written out here.
4 -- The internet is a real help in situations like yours, so keep trying, and you'll be amazed how many people will come up with suggestions. HOWEVER, in many states, the medical boards crack down on Lyme docs who treat aggressively (not like the docs you've seen already, it seems), so putting their names in public is a no-no. Private messages on websites like this, or joining a local Lyme group and going to a few meetings to get to know people, can be a good source of leads and recommendations.
About paying for testing and treatment, many Lyme docs do not take insurance, but they will give you a bill that you can submit to your insurance company, and then you only owe the doc the difference between your insurance policy and the amount charged. That's what I did, and it worked fine.
If you are unable to pay, there are Lyme charities that you can apply to for funding for testing and treatment, but it is for those truly with no funds of their own. LymeLight Foundation is the name of one of the better known charities, LymeTAP is another. (I think I got those names right.)
----------------------------------------------
If you are too tired and foggy-brained to deal with all this, recruit a friend or relative to help you find a doc nearby and to help you get back and forth for appointments if need be. Sometimes the docs are not right in your town, and traveling for appointments may be necessary, but if you have friends who can help you get there, and once diagnosis is established and you're settled in with treatment, appointments are maybe once a month about a year or so. Everyone is different, depending on what (co)infections you have.
You can also post a new message here titled something like "Need LLMD near [Topeka KS]" and then if anyone has a recommendation, they can send a 'private message' to you through this website, which keeps the message out of the public eye and also keeps the anonymity of the people posting here and also the docs, as you and I are doing now by using something other than our full names and by not naming the LLMDs here in the open.
Sounds like a real hassle, doesn't it? I gotta say, tho, it's worth it. You sound strong and determined, and that will help you enormously.
===============================================
You say above, "Just got a message back from my PCP. She basically said I didn't need to have a Western Blot done because I had a negative Elisa." That's not uncommon. There are lots of docs who don't 'believe' in Lyme, so just keep on going till you find someone more aware and thoughtful. Lyme is a fast-changing area of medicine, and with the split in the medical community about how serious Lyme is or isn't, you'll see lots of odd things as you go about getting diagnosed and treated. That's just the way things are currently, and why this website is so useful.
You ask, "How does the iGENex testing work? Does a physician have to approve you having that testing done?" It's a blood test, so you have to get a doc's order to get the blood drawn and sent to IgeneX for analysis. The few times I called IgeneX about one thing or another, they were extremely helpful and kind, if you need to call them with questions about testing.
"... Or can you go somewhere and have them draw blood?" Normally the blood draw requires an MD's order, and only IGeneX has the rights to offer its particular test. Using a collection kit from IGeneX (I think? it's been a while since I got tested), blood gets drawn local to where you are, and then the local lab sends the blood sample to IGeneX labs for analysis. IGeneX then sends the results to your doc who gave the order for the test, and your doc will meet with you to discuss the results and next steps.
Be sure to get full copies of ALL your tests: getting copies later is an iffy thing, and what one doc reads as unimportant in your test results may look very different from another doc. It's all part of the strangeness of Lyme.
"Also- what tests do you order just for Lyme and around how much do they cost?" What tests are ordered depends on your symptoms. About half the time, Lyme ticks carry other infections that have to be tested for separately, and then, if positive, the resulting treatment is often different kinds of meds than for Lyme. The price depends on the tests and the medication, but insurance usually pays most of it. If you don't have insurance, there are some sources of funding for those with Lyme who truly can't afford the meds. More about that later, if needed. You can call IGeneX and ask for pricing; I don't know if they will tell you, but I bet they will. They are very nice.
"Sorry to bother everyone- just so frustrated! Ha!" You're not a bother at all. I think you're doing an excellent job of thinking and working your way through all this. Hang in there, and keep us posted!
To find a Lyme specialist, there are two things I would do first:
1 -- email to
---- contact [at] ILADS [dot] org ----
and tell them where you are located ('25 miles from Charlottesville VA" or whatever description fits) AND how far you can travel. ILADS can email you back with docs' names near you.
As far as I know, any doc can join ILADS (short for International Lyme and Associated Diseases Society), which is a voluntary group for docs with an interest in Lyme. There is no test that a doc has to take to be a member, as far as I know, so it's possible you can end up seeing some strange doc that really doesn't suit you or doesn't really seem on the ball. You can ask ILADS for another name till you get a doc you are comfortable with.
2 -- Look around online using searches like
--- Virginia Lyme disease ---
and see what you find. You may also find links to local Lyme groups that can be excellent sources of information.
3 -- Post a new question here titled something like "Need LLMD near Charlottesville VA" or whatever area you can get to ("...western VA within 100 miles of Charlottesville"). We do NOT put Lyme docs' names in the open here, because in some states and areas, the Lyme-deniers will try to put a Lyme doc out of business, which is why you don't seen docs' names written out here.
4 -- The internet is a real help in situations like yours, so keep trying, and you'll be amazed how many people will come up with suggestions. HOWEVER, in many states, the medical boards crack down on Lyme docs who treat aggressively (not like the docs you've seen already, it seems), so putting their names in public is a no-no. Private messages on websites like this, or joining a local Lyme group and going to a few meetings to get to know people, can be a good source of leads and recommendations.
About paying for testing and treatment, many Lyme docs do not take insurance, but they will give you a bill that you can submit to your insurance company, and then you only owe the doc the difference between your insurance policy and the amount charged. That's what I did, and it worked fine.
If you are unable to pay, there are Lyme charities that you can apply to for funding for testing and treatment, but it is for those truly with no funds of their own. LymeLight Foundation is the name of one of the better known charities, LymeTAP is another. (I think I got those names right.)
----------------------------------------------
If you are too tired and foggy-brained to deal with all this, recruit a friend or relative to help you find a doc nearby and to help you get back and forth for appointments if need be. Sometimes the docs are not right in your town, and traveling for appointments may be necessary, but if you have friends who can help you get there, and once diagnosis is established and you're settled in with treatment, appointments are maybe once a month about a year or so. Everyone is different, depending on what (co)infections you have.
You can also post a new message here titled something like "Need LLMD near [Topeka KS]" and then if anyone has a recommendation, they can send a 'private message' to you through this website, which keeps the message out of the public eye and also keeps the anonymity of the people posting here and also the docs, as you and I are doing now by using something other than our full names and by not naming the LLMDs here in the open.
Sounds like a real hassle, doesn't it? I gotta say, tho, it's worth it. You sound strong and determined, and that will help you enormously.
===============================================
You say above, "Just got a message back from my PCP. She basically said I didn't need to have a Western Blot done because I had a negative Elisa." That's not uncommon. There are lots of docs who don't 'believe' in Lyme, so just keep on going till you find someone more aware and thoughtful. Lyme is a fast-changing area of medicine, and with the split in the medical community about how serious Lyme is or isn't, you'll see lots of odd things as you go about getting diagnosed and treated. That's just the way things are currently, and why this website is so useful.
You ask, "How does the iGENex testing work? Does a physician have to approve you having that testing done?" It's a blood test, so you have to get a doc's order to get the blood drawn and sent to IgeneX for analysis. The few times I called IgeneX about one thing or another, they were extremely helpful and kind, if you need to call them with questions about testing.
"... Or can you go somewhere and have them draw blood?" Normally the blood draw requires an MD's order, and only IGeneX has the rights to offer its particular test. Using a collection kit from IGeneX (I think? it's been a while since I got tested), blood gets drawn local to where you are, and then the local lab sends the blood sample to IGeneX labs for analysis. IGeneX then sends the results to your doc who gave the order for the test, and your doc will meet with you to discuss the results and next steps.
Be sure to get full copies of ALL your tests: getting copies later is an iffy thing, and what one doc reads as unimportant in your test results may look very different from another doc. It's all part of the strangeness of Lyme.
"Also- what tests do you order just for Lyme and around how much do they cost?" What tests are ordered depends on your symptoms. About half the time, Lyme ticks carry other infections that have to be tested for separately, and then, if positive, the resulting treatment is often different kinds of meds than for Lyme. The price depends on the tests and the medication, but insurance usually pays most of it. If you don't have insurance, there are some sources of funding for those with Lyme who truly can't afford the meds. More about that later, if needed. You can call IGeneX and ask for pricing; I don't know if they will tell you, but I bet they will. They are very nice.
"Sorry to bother everyone- just so frustrated! Ha!" You're not a bother at all. I think you're doing an excellent job of thinking and working your way through all this. Hang in there, and keep us posted!
Ugh. Just got a message back from my PCP. She basically said I didn't need to have a Western Blot done because I had a negative Elisa. How does the iGENex testing work? Does a physician have to approve you having that testing done? Or can you go somewhere and have them draw blood? Also- what tests do you order just for Lyme and around how much do they cost? Sorry to bother everyone- just so frustrated! Ha!
The only other question I have right now is what can I do to find a good LLMD relatively close to me in SW Virginia? Is there a website I can use or does someone know of a good doc in that area they can PM me the name of? Thank you all! Hopefully I'll get this sorted out and figure out what's been wrong with me this whole time and start some kind of treatment soon.
Thank you so much for your response! It's crazy that this disease can cause lesions on your brain and still go undiagnosed! I know the MS diagnosis is one of exclusion where they rule everything else out, but it's so crazy that they think they can rule out one of the biggest imitators through tests that are so unreliable!
Thank you so much for your response Jackie! It means a lot to me. I know what you mean about other doctors not understanding. My Neuro mentioned Lyme at the beginning when I asked about other causes, if it's not MS. However, when I went for a follow up and he said he didn't know and wanted to refer me to UVA, I asked about the possibility of Lyme because I'd only had the Elisa and it's wrong sometimes. He totally shrugged it off and was like, 'no, I don't think so'. Ha! I was like- you brought it up and it hasn't been ruled out yet. Oh well, we'll see what happens next. I really appreciate your in-depth response- I can't imagine the time that must've taken! :)
I am one of those that had an MS diagnosis as well as lupus but it was Lyme. My pharmacists friend spent 20 years in a wheel chair with MS, she told her about Lyme and she is now walking.
I have had most of those symptoms including an MRI which showed lesions.
The lesions have decreased with treatment of Lyme and co-infections.
I urge you to find an LLMD as Jackie suggested
I have had most of those symptoms including an MRI which showed lesions.
The lesions have decreased with treatment of Lyme and co-infections.
I urge you to find an LLMD as Jackie suggested
[part 2 of message above]
You say: "Neuro exam:
-left sided Babinskis and hyperreflexes
-right side optic disc sweeping"
I don't know the details of these symptoms, but a Lyme doc would understand and explain the situation and its overall risks.
You say:
"Tests:-MRIs came back fine (brain and spine with and without contrast)" -- that's likely because MRIs are not testing in a way that picks up a Lyme infection.
"-Evoked potentials on my eyes came back normal" -- I don't know what this means, but an ophthalmologist who understands Lyme would know.
"-Neuro still thinks MS even though I don't have lesions and is sending me to UVA to a MS specialist." Because neurologists usually have a huge blind spot when it comes to Lyme, it does not surprise me that the neuro is sending you off to an MS doc. I would see a Lyme doc for a work up before assuming it is MS.
"-B-12 and Vitamin D were fine on blood tests" -- good.
"-I had positive ANA but negative DNA for Lupus and negative S'jorgens test" These are not generally significant in Lyme testing and diagnosis, from what I read.
"-I believe my doc used the Elisa to test for Lyme which came back as .25 (negative?) I'm gonna ask her for a Western Blot and see what that says- thought I know they're not reliable." ELISA and W.blot tests are measuring not the presence of Lyme bacteria in your body, but instead are measuring the antibodies your immune system is making against any Lyme infection. That sounds useful, *but* Lyme has the ability to suppress your immune system, so if your antibodies are suppressed, these tests can well come back negative **even if you really do have Lyme.** There is another kind of test that Lyme docs use in addition to ELISA and W.blot, called polymerase chain reaction ('PCR' for short). PCR looks in your blood for Lyme bacteria DNA, and that is a far more reliable test than ELISA and W.blot. In summary: if the ELISA and W.blot tests are positive, the results are reliable; if they are negative, they could be wrong. PCR however is accurate, but nonLyme docs usually refuse to use PCR, believing that ELISA and Wblot are good enough. Duh.
You ask: "Any thoughts or advice on what I should do or if my symptoms sounds like Possible Lyme?" See a Lyme specialist without delay.
"I feel worse by the day for the most part and the hand tremors are getting worse. They've been creeping on for months and are just now to the point where they're there almost all the time when I move my hands." All the more reason to find a Lyme doc.
"Thank you for anyone who reads all this!" You are quite welcome -- we've all been where you are. "I'm sorry I wrote a dissertation! ;)" Don't be sorry: stay strong and determined!
It looks like some other posts are pasted into this message, including: "I'm in southwestern VA by the way- if anyone wants to know. Been bitten by at least one tick- long ago- no noticeable rash. Had other opportunities to get a bite but haven't noticed any. Thanks!" I never saw a tick on me or had a rash, but I sure had Lyme. It has to be diagnosed and properly treated before it will go away.
Mallori735
"OH! And I have muscle twitches. Like, how your eyelid twitches sometimes. But these are all over, and mainly noticeable when laying down for the night. Sometimes in my back, legs, butt, hands, almost everywhere. Never had them before- very strange." That is common because Lyme uses up Mg in your system, which leads to twitchy muscles, among other things.
"AND! Haha! After images- all the damn time... After images on after images on after images. Last one, promise. ;)" That's why it's good to see an ophthalmologist.
==================================
Whew! Seriously, seeing a Lyme specialist is imo and in my experience critically important to being properly diagnosed and treated. Other docs just don't get it, but they often like to bad-mouth Lyme docs. Once you understand the split in the medical community, things begin to make more sense. Go for it!
You say: "Neuro exam:
-left sided Babinskis and hyperreflexes
-right side optic disc sweeping"
I don't know the details of these symptoms, but a Lyme doc would understand and explain the situation and its overall risks.
You say:
"Tests:-MRIs came back fine (brain and spine with and without contrast)" -- that's likely because MRIs are not testing in a way that picks up a Lyme infection.
"-Evoked potentials on my eyes came back normal" -- I don't know what this means, but an ophthalmologist who understands Lyme would know.
"-Neuro still thinks MS even though I don't have lesions and is sending me to UVA to a MS specialist." Because neurologists usually have a huge blind spot when it comes to Lyme, it does not surprise me that the neuro is sending you off to an MS doc. I would see a Lyme doc for a work up before assuming it is MS.
"-B-12 and Vitamin D were fine on blood tests" -- good.
"-I had positive ANA but negative DNA for Lupus and negative S'jorgens test" These are not generally significant in Lyme testing and diagnosis, from what I read.
"-I believe my doc used the Elisa to test for Lyme which came back as .25 (negative?) I'm gonna ask her for a Western Blot and see what that says- thought I know they're not reliable." ELISA and W.blot tests are measuring not the presence of Lyme bacteria in your body, but instead are measuring the antibodies your immune system is making against any Lyme infection. That sounds useful, *but* Lyme has the ability to suppress your immune system, so if your antibodies are suppressed, these tests can well come back negative **even if you really do have Lyme.** There is another kind of test that Lyme docs use in addition to ELISA and W.blot, called polymerase chain reaction ('PCR' for short). PCR looks in your blood for Lyme bacteria DNA, and that is a far more reliable test than ELISA and W.blot. In summary: if the ELISA and W.blot tests are positive, the results are reliable; if they are negative, they could be wrong. PCR however is accurate, but nonLyme docs usually refuse to use PCR, believing that ELISA and Wblot are good enough. Duh.
You ask: "Any thoughts or advice on what I should do or if my symptoms sounds like Possible Lyme?" See a Lyme specialist without delay.
"I feel worse by the day for the most part and the hand tremors are getting worse. They've been creeping on for months and are just now to the point where they're there almost all the time when I move my hands." All the more reason to find a Lyme doc.
"Thank you for anyone who reads all this!" You are quite welcome -- we've all been where you are. "I'm sorry I wrote a dissertation! ;)" Don't be sorry: stay strong and determined!
It looks like some other posts are pasted into this message, including: "I'm in southwestern VA by the way- if anyone wants to know. Been bitten by at least one tick- long ago- no noticeable rash. Had other opportunities to get a bite but haven't noticed any. Thanks!" I never saw a tick on me or had a rash, but I sure had Lyme. It has to be diagnosed and properly treated before it will go away.
Mallori735
"OH! And I have muscle twitches. Like, how your eyelid twitches sometimes. But these are all over, and mainly noticeable when laying down for the night. Sometimes in my back, legs, butt, hands, almost everywhere. Never had them before- very strange." That is common because Lyme uses up Mg in your system, which leads to twitchy muscles, among other things.
"AND! Haha! After images- all the damn time... After images on after images on after images. Last one, promise. ;)" That's why it's good to see an ophthalmologist.
==================================
Whew! Seriously, seeing a Lyme specialist is imo and in my experience critically important to being properly diagnosed and treated. Other docs just don't get it, but they often like to bad-mouth Lyme docs. Once you understand the split in the medical community, things begin to make more sense. Go for it!
Greetings -- you give a good account of your situation now and in the recent past -- I am sorry you are feeling so poorly, and I have a strong suggestion for you:
--Find a Lyme specialist.--
Not a neurologist or rheumatologist; not an MS specialist; and probably not an infectious disease doc. There is a war going on in the medical community about how to test, diagnose and treat those with Lyme, and the kinds of docs you have seen are well known for not 'believing' in Lyme.
I went on a trek very much like yours, getting no useful answers at all, until the 20th doc I saw stated: "I would say you have Lyme disease, but you don't look sick enough. You cannot possibly have Lyme. I have patients with Lyme, and they are ... all ... near death."
Why that idiot doc didn't bother to crawl out of her burrow and see what new research was being done on Lyme, I simply do not know -- but that kind of denial about Lyme is widespread in the medical community. I think a major cause of that denial is that Lyme is quite a new disease, and there have not been decades of research and understanding -- so the initial views of Lyme ("rare, hard to get, easy to cure") are still in play. The docs who came up with that conclusion are still high up in the medical hierarchy, and if a junior doc contradicts one of the old granddad docs, well ... let's say that the junior doc will have a short career in anything interesting in medicine.
I had had an old friend some years before who had had Lyme -- it was the first time I eve heard of it -- so when Doc #20 told me I had a positive Lyme test, I *knew* it was serious ... and in addition to Lyme, I also had another infection often carried by the Lyme ticks (in my case, it was babesiosis, related to malaria). There are also another half dozen infections the 'Lyme' ticks may carry, and it takes a wise doc to tell what to test you for, based on your symptoms. MDs who are rheumatologists, infectious disease docs, and neurologists are high up on the list of deniers about Lyme.
====================
Given your list of what docs you have seen, you are in the position of having seen only MDs who do not believe in Lyme as a serious and spreading bacterial infection.
Neurologists as a group do not believe in Lyme as anything serious.
The electrical shock sensations and heart palpitations you are having may well be due to Lyme, because Lyme bacteria use up magnesium in your body, and without enough magnesium, the electrical messages that your cells use to communicate with each other cannot function properly, giving twitches and jerks and aches and pain. Low magnesium levels also are hard on the endocrine system, including mood and emotion. (Also note that low magnesium levels can interfere seriously with the heart's ability to transmit messages among the heart's cells to beat properly and regularly. The heart can be damaged, and the results can be dangerous and even deadly. I knew someone that happened to, but the docs had no clue.)
The shocks and zaps you are feeling ("past years I've had, what I think to be L'hermittes or some kind of shocking going down my neck, a few weeks of the room spinning when stood up, seeing lights in my peripheral") could well be due to low magnesium levels interfering with the cells' ability to transmit electrical signals among themselves, resulting in poor coordination in contraction and relaxation by the cells. And don't forget: the heart is a muscle too, with the same effect from Lyme.
You say, "In the past few months I've developed:
"-toes on the left foot twitching or moving on their own
"-weird, vibrating feelings in my left leg
"-muscle cramps/spasms in almost all of my muscles, mainly on left, but also right side
"-strong stinging sensation that feel like a bug bite but nothing is there, only last a few seconds, sometimes they pulse
"-small areas on my nose, bottom lip and above eye, also on my arm and legs that feel like they're being touched, or rubbed really gently, weird. In my scalp, too. Usually in the same places, repeatedly.
"-muscle jerks, mainly legs when I'm resting" -- all of these could be caused by Lyme and its interference with cellular coordination and activity.
You also note: "-lots of floaters, or just floaters that I notice much more than in the past" -- I was surprised when I went to see my ophthalmologist (MD specializing in eyes) and told him about my Lyme diagnosis. I was fairly apologetic, expecting him to roll his eyes and tell me I was imagining things etc., but NO! It turns out that ophthalmologists are among the medical specialists who DO understand Lyme! Be sure to get your eyes checked at some point, not by an optician or optometrist (they aren't MDs), but by an ophthalmologist.
You also report: "-extreme weakness- all over. Can't walk for long periods of time or I need to sit. It's hard to do simple things like scramble eggs (for like a minute?!? Ugh.) without whatever muscle I'm using hurting or just refusing to go any longer." Again this could well be the side effects of the Lyme using up your magnesium, and also just the result of inflammation from the bacterial infections that are Lyme and other tickborne diseases.
You report "extreme fatigue- I now take a nap almost everyday and sleep a good 10-12 hours a night as well. And even when I'm up I have to take breaks." Again, this is consistent with Lyme.
You say: "I've had heart palpitations as well- which I've mainly noticed when I take a deep breath." Lyme like to live in the heart muscle, which can lead to heart damage. My mother died of heart failure at a relatively young age, and I suspect it was due to Lyme, given her other symptoms, but her docs never figured it out.
You say: "Most recently: my hands have started to shake or tremor." Also perhaps due to low magnesium levels.
You say: "I'm sure im forgetting some things, so many things have been going on" -- and Lyme messes with the ability to think and remember clearly. Your descriptions here are quite detailed and vivid, so if you have Lyme, it hasn't wiped out your mental and communicative abilities, but I remember well having 'brain fog' -- confusion, poor memory, and so on. After diagnosis and treatment, things get better again.
[message is too long; second part is below this message]
--Find a Lyme specialist.--
Not a neurologist or rheumatologist; not an MS specialist; and probably not an infectious disease doc. There is a war going on in the medical community about how to test, diagnose and treat those with Lyme, and the kinds of docs you have seen are well known for not 'believing' in Lyme.
I went on a trek very much like yours, getting no useful answers at all, until the 20th doc I saw stated: "I would say you have Lyme disease, but you don't look sick enough. You cannot possibly have Lyme. I have patients with Lyme, and they are ... all ... near death."
Why that idiot doc didn't bother to crawl out of her burrow and see what new research was being done on Lyme, I simply do not know -- but that kind of denial about Lyme is widespread in the medical community. I think a major cause of that denial is that Lyme is quite a new disease, and there have not been decades of research and understanding -- so the initial views of Lyme ("rare, hard to get, easy to cure") are still in play. The docs who came up with that conclusion are still high up in the medical hierarchy, and if a junior doc contradicts one of the old granddad docs, well ... let's say that the junior doc will have a short career in anything interesting in medicine.
I had had an old friend some years before who had had Lyme -- it was the first time I eve heard of it -- so when Doc #20 told me I had a positive Lyme test, I *knew* it was serious ... and in addition to Lyme, I also had another infection often carried by the Lyme ticks (in my case, it was babesiosis, related to malaria). There are also another half dozen infections the 'Lyme' ticks may carry, and it takes a wise doc to tell what to test you for, based on your symptoms. MDs who are rheumatologists, infectious disease docs, and neurologists are high up on the list of deniers about Lyme.
====================
Given your list of what docs you have seen, you are in the position of having seen only MDs who do not believe in Lyme as a serious and spreading bacterial infection.
Neurologists as a group do not believe in Lyme as anything serious.
The electrical shock sensations and heart palpitations you are having may well be due to Lyme, because Lyme bacteria use up magnesium in your body, and without enough magnesium, the electrical messages that your cells use to communicate with each other cannot function properly, giving twitches and jerks and aches and pain. Low magnesium levels also are hard on the endocrine system, including mood and emotion. (Also note that low magnesium levels can interfere seriously with the heart's ability to transmit messages among the heart's cells to beat properly and regularly. The heart can be damaged, and the results can be dangerous and even deadly. I knew someone that happened to, but the docs had no clue.)
The shocks and zaps you are feeling ("past years I've had, what I think to be L'hermittes or some kind of shocking going down my neck, a few weeks of the room spinning when stood up, seeing lights in my peripheral") could well be due to low magnesium levels interfering with the cells' ability to transmit electrical signals among themselves, resulting in poor coordination in contraction and relaxation by the cells. And don't forget: the heart is a muscle too, with the same effect from Lyme.
You say, "In the past few months I've developed:
"-toes on the left foot twitching or moving on their own
"-weird, vibrating feelings in my left leg
"-muscle cramps/spasms in almost all of my muscles, mainly on left, but also right side
"-strong stinging sensation that feel like a bug bite but nothing is there, only last a few seconds, sometimes they pulse
"-small areas on my nose, bottom lip and above eye, also on my arm and legs that feel like they're being touched, or rubbed really gently, weird. In my scalp, too. Usually in the same places, repeatedly.
"-muscle jerks, mainly legs when I'm resting" -- all of these could be caused by Lyme and its interference with cellular coordination and activity.
You also note: "-lots of floaters, or just floaters that I notice much more than in the past" -- I was surprised when I went to see my ophthalmologist (MD specializing in eyes) and told him about my Lyme diagnosis. I was fairly apologetic, expecting him to roll his eyes and tell me I was imagining things etc., but NO! It turns out that ophthalmologists are among the medical specialists who DO understand Lyme! Be sure to get your eyes checked at some point, not by an optician or optometrist (they aren't MDs), but by an ophthalmologist.
You also report: "-extreme weakness- all over. Can't walk for long periods of time or I need to sit. It's hard to do simple things like scramble eggs (for like a minute?!? Ugh.) without whatever muscle I'm using hurting or just refusing to go any longer." Again this could well be the side effects of the Lyme using up your magnesium, and also just the result of inflammation from the bacterial infections that are Lyme and other tickborne diseases.
You report "extreme fatigue- I now take a nap almost everyday and sleep a good 10-12 hours a night as well. And even when I'm up I have to take breaks." Again, this is consistent with Lyme.
You say: "I've had heart palpitations as well- which I've mainly noticed when I take a deep breath." Lyme like to live in the heart muscle, which can lead to heart damage. My mother died of heart failure at a relatively young age, and I suspect it was due to Lyme, given her other symptoms, but her docs never figured it out.
You say: "Most recently: my hands have started to shake or tremor." Also perhaps due to low magnesium levels.
You say: "I'm sure im forgetting some things, so many things have been going on" -- and Lyme messes with the ability to think and remember clearly. Your descriptions here are quite detailed and vivid, so if you have Lyme, it hasn't wiped out your mental and communicative abilities, but I remember well having 'brain fog' -- confusion, poor memory, and so on. After diagnosis and treatment, things get better again.
[message is too long; second part is below this message]
AND! Haha! After images- all the damn time... After images on after images on after images. Last one, promise. ;)
OH! And I have muscle twitches. Like, how your eyelid twitches sometimes. But these are all over, and mainly noticeable when laying down for the night. Sometimes in my back, legs, butt, hands, almost everywhere. Never had them before- very strange.
I'm in southwestern VA by the way- if anyone wants to know. Been bitten by at least one tick- long ago- no noticeable rash. Had other opportunities to get a bite but haven't noticed any. Thanks!
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