Aa
New with questions
I probably should give you a litle background about me. I'm in my 50's and have a diagnosis of MS. I've been sick a long time. I've never thought about Lyme Disease until recently--filling out a questionnaire for a new neurologist that included questions about rashes, etc. and thinking back into my past about how all my symptoms started.
About 15 years ago I developed a very odd rash. I do not remember having a tick bite, but the rash was very odd. Looking back, it was like having many, many bulls-eyes all over my body and it would migrate from place to place all day long. The rash was incredibly itchy and lasted about two weeks when the doctor finally gave me steroids to over come it. Within a couple days after taking steroids, the itchy rash went away.
Just prior to the rash I noticed I was getting achy joints--knees, shoulder, fingers, etc. I also felt like I couldn't breathe when I would lie flat in the bed. My heart felt like it was racing.
I had the following tests show up positive when in the doctor's office about the rash:
ANA (1:90)
C-Reactive-Protein
Sed-Rate (mildly elevated)
I got a referral to the rheumatologist and got in to see him a few months later. He ran many tests, including several for Lyme Disease, but were negative, but did test positive for an old parvo B19 infection . I did not have lupus or any indications that I had a rheumatological disease. My tests were all negative when I went to see him.
I went to another rheumatologist about six months later. Had many, many blood tests--including those for Lyme's Disease, and everything was negative. He was a well-known rheumatologis that had written several books about rheumatological diseases, so I trusted him. He did not see any evidence of lupus, etc. I also started getting migraine headaches, high blood pressure, and irregular heart beat.
Several years, I still had joint pain, I went to another rheumatologist, and the diagnosis was fibromyalgia. The joint pain finally disappeared after a while. I went off of fibro medicines, and joint pain continued to be gone, but MS-like symptoms started to appear:
numbness
muscle spasticity
eye problems (double vision--later optic neuritis)
paralysis that would come and go in an arm
painful feet
extreme fatigue
bladder incontinence
extreme weakness in arms
tremor
positive Babinski
esophageal spasms
throat constricture
extreme heat intolerance
hypothyroidism
cognitive dysfunction
There are more symptoms, but is a highlight of them. I started to go to a neurologist because my migraine headaches became so severe that I was getting two a day.
The first MRI was looking for a brain tumor and was not done on a very powerful machine. It was negative. I was treated for the migraine headaches, and the headaches started going away with changing my diet and new medicines for blood pressure control (beta blockers). However, I had symptoms that continued. A friend of mine at work, who had MS, suggested that I go to a different neurologist because my symptoms seemed eerily similar to hers, and when I told her about my vision issues, she said that was exactly the symptoms she had early on.
So, I set up an appointment with the neurologist. I had an MRI done of my brain on a 1.5T machine with contrast (much better than the one previously done). To my surprise I had lesions. I had many, many blood tests, too, the ones for Lyme were negative and so were the others.
The VEP showed slowing, so I went to see an eye doctor. I was diagnosed with optic neuritis. One pupil was not reacting as well as the other. Reds were washed out.
When I went back to the neurologist, I was diagnosed with MS. He said that people with MS often have lesions around the ventricles of the brain--where mine were located. I had them around the corpus callosum--another tell-tale sign of MS according to my neurologist.
I was placed on Copaxone and have been doing very wel--up until nowl. I've had new lesions develop in the brain, several years later, so I decided to seek another neurologist's opinion--that's where I'm at now. Filling out the questionnaire got me thinking into my past. What I've learned from reading all about MS over the years, I've learned a few things about MS and the diagnosis of it.
I am confused right now because I've never thought about Lyme Disease. I don't live in a place where ticks are common, but the way my disease started--with that really odd rash, I'm beginning to wonder if this could possibly be something else.
I have improved, while on the Copaxone to treat the MS up until recently when everything is going south (tremor, memory issues, pain returning in foot, muscle weakness).
So here's my questions:
1) What are your experiences with the rash--if you've had one (I know you don't necessarily have to have this or see a tick bite)? Please tell me if it migrated, was itchy, etc.
2) Does Lyme Disease cause optic neuritis that's so often seen in MS?
3) Can Lyme Disease start MS?
4) Can MS drugs be helpful (because it does appear that it helped stop some progression)?
5) What were some of your early symptoms?
6) Can treatment for Lyme Disease help someone that has it 15 years after the initial symptoms?
Thank you for reading this post--your eyes are probably glazed by now and are already extremely bored! I apologize, but wanted to get some good feedback from others with Lyme Disease.
Txgirl
About 15 years ago I developed a very odd rash. I do not remember having a tick bite, but the rash was very odd. Looking back, it was like having many, many bulls-eyes all over my body and it would migrate from place to place all day long. The rash was incredibly itchy and lasted about two weeks when the doctor finally gave me steroids to over come it. Within a couple days after taking steroids, the itchy rash went away.
Just prior to the rash I noticed I was getting achy joints--knees, shoulder, fingers, etc. I also felt like I couldn't breathe when I would lie flat in the bed. My heart felt like it was racing.
I had the following tests show up positive when in the doctor's office about the rash:
ANA (1:90)
C-Reactive-Protein
Sed-Rate (mildly elevated)
I got a referral to the rheumatologist and got in to see him a few months later. He ran many tests, including several for Lyme Disease, but were negative, but did test positive for an old parvo B19 infection . I did not have lupus or any indications that I had a rheumatological disease. My tests were all negative when I went to see him.
I went to another rheumatologist about six months later. Had many, many blood tests--including those for Lyme's Disease, and everything was negative. He was a well-known rheumatologis that had written several books about rheumatological diseases, so I trusted him. He did not see any evidence of lupus, etc. I also started getting migraine headaches, high blood pressure, and irregular heart beat.
Several years, I still had joint pain, I went to another rheumatologist, and the diagnosis was fibromyalgia. The joint pain finally disappeared after a while. I went off of fibro medicines, and joint pain continued to be gone, but MS-like symptoms started to appear:
numbness
muscle spasticity
eye problems (double vision--later optic neuritis)
paralysis that would come and go in an arm
painful feet
extreme fatigue
bladder incontinence
extreme weakness in arms
tremor
positive Babinski
esophageal spasms
throat constricture
extreme heat intolerance
hypothyroidism
cognitive dysfunction
There are more symptoms, but is a highlight of them. I started to go to a neurologist because my migraine headaches became so severe that I was getting two a day.
The first MRI was looking for a brain tumor and was not done on a very powerful machine. It was negative. I was treated for the migraine headaches, and the headaches started going away with changing my diet and new medicines for blood pressure control (beta blockers). However, I had symptoms that continued. A friend of mine at work, who had MS, suggested that I go to a different neurologist because my symptoms seemed eerily similar to hers, and when I told her about my vision issues, she said that was exactly the symptoms she had early on.
So, I set up an appointment with the neurologist. I had an MRI done of my brain on a 1.5T machine with contrast (much better than the one previously done). To my surprise I had lesions. I had many, many blood tests, too, the ones for Lyme were negative and so were the others.
The VEP showed slowing, so I went to see an eye doctor. I was diagnosed with optic neuritis. One pupil was not reacting as well as the other. Reds were washed out.
When I went back to the neurologist, I was diagnosed with MS. He said that people with MS often have lesions around the ventricles of the brain--where mine were located. I had them around the corpus callosum--another tell-tale sign of MS according to my neurologist.
I was placed on Copaxone and have been doing very wel--up until nowl. I've had new lesions develop in the brain, several years later, so I decided to seek another neurologist's opinion--that's where I'm at now. Filling out the questionnaire got me thinking into my past. What I've learned from reading all about MS over the years, I've learned a few things about MS and the diagnosis of it.
I am confused right now because I've never thought about Lyme Disease. I don't live in a place where ticks are common, but the way my disease started--with that really odd rash, I'm beginning to wonder if this could possibly be something else.
I have improved, while on the Copaxone to treat the MS up until recently when everything is going south (tremor, memory issues, pain returning in foot, muscle weakness).
So here's my questions:
1) What are your experiences with the rash--if you've had one (I know you don't necessarily have to have this or see a tick bite)? Please tell me if it migrated, was itchy, etc.
2) Does Lyme Disease cause optic neuritis that's so often seen in MS?
3) Can Lyme Disease start MS?
4) Can MS drugs be helpful (because it does appear that it helped stop some progression)?
5) What were some of your early symptoms?
6) Can treatment for Lyme Disease help someone that has it 15 years after the initial symptoms?
Thank you for reading this post--your eyes are probably glazed by now and are already extremely bored! I apologize, but wanted to get some good feedback from others with Lyme Disease.
Txgirl
Did your friend get tested by an LLMD? The WBlot/ELISA tests are so erratic that it takes someone really good at reading them *in conjunction with history and symptoms* to rule out Lyme. PCR testing would be good too, from what I understand. I would be disinclined to accept an MS diagnosis without being sure it wasn't Lyme ... but that's me, and I'm not medically trained ... just been fooled before.
Lyme is everywhere, never mind what the little maps show. Ticks can't read maps, after all.
Lyme is everywhere, never mind what the little maps show. Ticks can't read maps, after all.
I was super surprised when I found out an acquaintance had MS this past week and they also did lyme testing to rule it out...and here in NE no less.. I was shocked!!!
That's an interesting thought, that anyone diagnosed with MS be worked up for Lyme. Given how fast and far Lyme is spreading, doing that differential diagnosis might be a good thing. Don't know what the docs think on that point tho.
PS
If you are up for reading, there is a book called Cure Unknown by Pamela Weintraub (paperback). She is a trained medical journalist whose family all got Lyme and the saga they went through is described in the book, but also woven with the story of the mess that the medical community is in over this illness. It's a brilliant book imo.
There is also a movie called Under Our Skin that some recommend, but I don't care for it. It is like a Halloween slasher movie, big on scaring people and short on factual information and balance, IN MY OPINION. The movie has its fans, but if you see it, don't be afraid that you will end up like some of the people in that movie. I was VERY ill and never twitchy and frail like some of those folks.
If you are up for reading, there is a book called Cure Unknown by Pamela Weintraub (paperback). She is a trained medical journalist whose family all got Lyme and the saga they went through is described in the book, but also woven with the story of the mess that the medical community is in over this illness. It's a brilliant book imo.
There is also a movie called Under Our Skin that some recommend, but I don't care for it. It is like a Halloween slasher movie, big on scaring people and short on factual information and balance, IN MY OPINION. The movie has its fans, but if you see it, don't be afraid that you will end up like some of the people in that movie. I was VERY ill and never twitchy and frail like some of those folks.
A few comments on your post:
You say: "[My GP] may know of a good Infectious Disease [ID] doctor to see." I would not limit the search to ID docs for advice on Lyme. Yes, it is logical that an ID doc would the right type of specialist, but ID docs and neurologists are very often anti-Lyme because the original researchers (like Steere and Wormser, mentioned in my post above) were ID docs and neurologists. Those specialists are thoroughly indoctrinated in the 'hard to get/easy to cure' school of Lyme diagnosis and treatment. I would *not* limit my search to those specialties, and in fact would be surprised if you find one who is open minded, esp in Texas, where it is likely those very specialties that are suppressing dissident voices in the medical community. I would bet that you end up with a non-neuro and non-ID doc, but you may get very lucky. Sticking close to your GP for guidance and finding an LLMD is a good idea, but know that you may have to do a good bit of this on your own if the GP won't play ball out of fear of the TX medical board coming down on him.
You say: "I do know that Lyme Disease can show hyperintensities in the white matter of the brain and look very much like MS. I wonder how a neurologist can tell the difference." They can't tell the difference, which is why LLMDs often use SPECT scans instead of MRIs.
You say: "My neurologist was sure it was demyelinating because of the location of the spots, but I have never asked him if it could be Lyme Disease." You could ask, but I'd bet you the answer would be a snappy no.
You say: "I have had all of those negative results from different Lyme Disease tests." Not uncommon. The tests are not very accurate and should not be relied upon as the final word. Docs these days are too accustomed to relying wholly on tests and have forgotten basic diagnostic skills imo.
You say: "I had told my neurologist that I've been tested for Lyme Disease before (before I knew anything about false negative results), but he said told me that he was running tests anyway and was going to use a more specific test for it (I do not know what it was he said)." If it was a PCR test, I would be impressed. That is a better test than the ELISA and Western blot tests most docs use, because PCR looks for tiny bits of Lyme bacteria DNA in your blood (a direct measure of infection), where the older and less reliable ELISA and W. blot tests look for your immune system's reaction to Lyme infection ... and the problem is that after a while, your immune system, which is used to fighting off the infections that last a couple of weeks, gives up and stops making the antibodies to Lyme that would be measured by ELISA and W. blot. Sometimes an LLMD will give a short course of abx and then retest with ELISA and W.blot, because the abx will stir up your body to recognize that Lyme is still there and start making the antibodies that ELISA and W. blot can measure.
If you do not have copies of these older tests and can get copies without too much hassle, I would do so and take them to the LLMD you end up seeing. I think you are entitled by law to have copies of all test results, tho perhaps if they are cheap they may try to charge photocopy costs (minimal). I have a binder of my own with all test results in it, bec. once they disappear into a doc's file room, you will never know if you get them all later when requested. These older tests might be of interest to your new LLMD.
You say: "What is the best test for Lyme Disease?" ELISA and W.blot at the basic ones that all docs incl. LLMDs use, and then LLMDs also often do PCR testing (mentioned above).
You say: "If the brain is damaged from MS (or anything else) would it show up abnormal too on the SPECT scan ...?" No, I don't think so, because the beauty of SPECT scan is that it is useful in Lyme in particular.
You say: "[My GP] may know of a good Infectious Disease [ID] doctor to see." I would not limit the search to ID docs for advice on Lyme. Yes, it is logical that an ID doc would the right type of specialist, but ID docs and neurologists are very often anti-Lyme because the original researchers (like Steere and Wormser, mentioned in my post above) were ID docs and neurologists. Those specialists are thoroughly indoctrinated in the 'hard to get/easy to cure' school of Lyme diagnosis and treatment. I would *not* limit my search to those specialties, and in fact would be surprised if you find one who is open minded, esp in Texas, where it is likely those very specialties that are suppressing dissident voices in the medical community. I would bet that you end up with a non-neuro and non-ID doc, but you may get very lucky. Sticking close to your GP for guidance and finding an LLMD is a good idea, but know that you may have to do a good bit of this on your own if the GP won't play ball out of fear of the TX medical board coming down on him.
You say: "I do know that Lyme Disease can show hyperintensities in the white matter of the brain and look very much like MS. I wonder how a neurologist can tell the difference." They can't tell the difference, which is why LLMDs often use SPECT scans instead of MRIs.
You say: "My neurologist was sure it was demyelinating because of the location of the spots, but I have never asked him if it could be Lyme Disease." You could ask, but I'd bet you the answer would be a snappy no.
You say: "I have had all of those negative results from different Lyme Disease tests." Not uncommon. The tests are not very accurate and should not be relied upon as the final word. Docs these days are too accustomed to relying wholly on tests and have forgotten basic diagnostic skills imo.
You say: "I had told my neurologist that I've been tested for Lyme Disease before (before I knew anything about false negative results), but he said told me that he was running tests anyway and was going to use a more specific test for it (I do not know what it was he said)." If it was a PCR test, I would be impressed. That is a better test than the ELISA and Western blot tests most docs use, because PCR looks for tiny bits of Lyme bacteria DNA in your blood (a direct measure of infection), where the older and less reliable ELISA and W. blot tests look for your immune system's reaction to Lyme infection ... and the problem is that after a while, your immune system, which is used to fighting off the infections that last a couple of weeks, gives up and stops making the antibodies to Lyme that would be measured by ELISA and W. blot. Sometimes an LLMD will give a short course of abx and then retest with ELISA and W.blot, because the abx will stir up your body to recognize that Lyme is still there and start making the antibodies that ELISA and W. blot can measure.
If you do not have copies of these older tests and can get copies without too much hassle, I would do so and take them to the LLMD you end up seeing. I think you are entitled by law to have copies of all test results, tho perhaps if they are cheap they may try to charge photocopy costs (minimal). I have a binder of my own with all test results in it, bec. once they disappear into a doc's file room, you will never know if you get them all later when requested. These older tests might be of interest to your new LLMD.
You say: "What is the best test for Lyme Disease?" ELISA and W.blot at the basic ones that all docs incl. LLMDs use, and then LLMDs also often do PCR testing (mentioned above).
You say: "If the brain is damaged from MS (or anything else) would it show up abnormal too on the SPECT scan ...?" No, I don't think so, because the beauty of SPECT scan is that it is useful in Lyme in particular.
I agree with everything Jackie said. I think from what I know now, I would recommend for everyone who has been diagnosed with MS to also be tested for lyme.
All of my symptoms started last year after a trip to Texas... I have been doing treatment for a couple months now, it has been a scary road for sure, but hopefully it will someday be in the past...
All of my symptoms started last year after a trip to Texas... I have been doing treatment for a couple months now, it has been a scary road for sure, but hopefully it will someday be in the past...
Thank you very much for your response. It is extremely helpful. :) I do have a lot of problems with my memory. I forget people's names and other trivial things. Sometimes I'll even forget what someone has just said to me--driving everyone in my house crazy!
I will for sure have problems finding a good Lyme Disease doctor because it is difficult to even find a good GP, but it's not totally out of the realm because I think I finally have a good GP. He may know of a good Infectious Disease doctor to see. My GP was the one who suggested that I see a different neurologist for a second opinion about the MS treatment in the first place. I will bring the list of names from the site that you recommended (thank you so much!).
I do know that Lyme Disease can show hyperintensities in the white matter of the brain and look very much like MS. I wonder how a neurologist can tell the difference. My neurologist was sure it was demyelinating because of the location of the spots, but I have never asked him if it could be Lyme Disease.
I have had all of those negative results from different Lyme Disease tests. I had told my neurologist that I've been tested for Lyme Disease before (before I knew anything about false negative results), but he said told me that he was running tests anyway and was going to use a more specific test for it (I do not know what it was he said). Whatever the test was, I did show negative to that one (but it has been years later when I got it). What is the best test for Lyme Disease?
if the brain is damaged from MS (or anything else) would it show up abnormal too on the SPECT scan or is this the differential test I need to show the problem?
I'll let you know how things work out. It sounds like it could be a long road ahead, but I hope I don't hit any road blocks!
Thanks again,
Txgirl
I will for sure have problems finding a good Lyme Disease doctor because it is difficult to even find a good GP, but it's not totally out of the realm because I think I finally have a good GP. He may know of a good Infectious Disease doctor to see. My GP was the one who suggested that I see a different neurologist for a second opinion about the MS treatment in the first place. I will bring the list of names from the site that you recommended (thank you so much!).
I do know that Lyme Disease can show hyperintensities in the white matter of the brain and look very much like MS. I wonder how a neurologist can tell the difference. My neurologist was sure it was demyelinating because of the location of the spots, but I have never asked him if it could be Lyme Disease.
I have had all of those negative results from different Lyme Disease tests. I had told my neurologist that I've been tested for Lyme Disease before (before I knew anything about false negative results), but he said told me that he was running tests anyway and was going to use a more specific test for it (I do not know what it was he said). Whatever the test was, I did show negative to that one (but it has been years later when I got it). What is the best test for Lyme Disease?
if the brain is damaged from MS (or anything else) would it show up abnormal too on the SPECT scan or is this the differential test I need to show the problem?
I'll let you know how things work out. It sounds like it could be a long road ahead, but I hope I don't hit any road blocks!
Thanks again,
Txgirl
Welcome -- sorry you have reason to be here, but hey.
Looks like you may be in Texas, given your screen name. If so, be aware that Texas is one of the states where the medical authorities are very much against any progressive view and treatment of Lyme, so even more than in many places, you may find it difficult to get a straight-up consultation from a doc who has an open mind. Not impossible, but it may take some snooping around even more than the rest of us go through. Just fyi. There is, I believe a Texas Lyme disease association that may be helpful.
That said, good for you for thinking bigger thoughts than your docs are. You may be aware that there is a fixed orthodoxy in so-called mainstream medicine about what Lyme is and is not and how to treat it or not. Docs who have open minds toward Lyme as a complex disease not easily cured by a couple weeks of antibiotics are often referred to by patients as LLMDs, shorthand for Lyme-Literate MDs, meaning open-minded: not a formal designation and no doc calls him/herself and LLMD.
You give a good history --- this is much to your advantage. One symptom in some of us with Lyme is poor memory, and you don't seem to have that, which is good news for you. (Lyme has many symptoms and effects, different in everyone and different in the same person over time, and some of us get more neurological involvement than others. Also complicating the situation is that the ticks that carry Lyme often -- perhaps half the time -- carry other diseases with different symptoms and requiring different treatment.)
My comments on your questions are below:
"1) What are your experiences with the rash--if you've had one (I know you don't necessarily have to have this or see a tick bite)? Please tell me if it migrated, was itchy, etc."
Many of us never have rashes, or may have them on the scalp etc. where we don't see them. The look of the rashes also varies from person to person. If you search online (such as in google images) for lyme rash you will find a lot of photos. (I just typed lyme rash into the google search bar, then on the left side of the screen that comes up, clicked on 'images' and lots and lots of them show up.) Rash is helpful in diagnosis, but not required.
"2) Does Lyme Disease cause optic neuritis that's so often seen in MS?"
I believe the answer is yes; google lyme optic neuritis. Lots of hits.
"3) Can Lyme Disease start MS?"
Here's where things get tricky. MS is an autoimmune disease, in which the immune system gets confused and attacks the host body (us). To my knowledge, there is not much understanding of what causes MS, and treatments are given which suppress the immune response.
Lyme on the other hand is a bacterial infection. Suppressing the immune system in a bacterial infection is the opposite of what one would think makes sense, and many here and elsewhere have worsened after being put on steroids, which suppress the immune system, which is valiantly fighting against Lyme, a bacterial infection. Steroids are the general class of meds used against MS.
I looked up Copaxone, which you have been given. It appears (and I am NOT medically trained!!!) that Copaxone is not a steroid, but a combination of amino acids that may act as a decoy for whatever is causing the illness. Copaxone use and effectiveness seems to be questioned by some in what I read.
That said, back to your question: "Can Lyme disease start MS?"
Some nonLLMDs (meaning mainstream medicine) have tried to explain away the fact that those diagnosed with Lyme and treated with a few weeks of antibiotics (abx) then relapse or don't improve much at all. The nonLLMDs hypothesize that the short course of abx has actually killed the Lyme bacteria, but the immune system is on overdrive and continues to try to kill what is no longer there -- and this over-reaction is considered auto-immune: the body's immune system attacking the body.
That's what MS does too, so your question "Can Lyme Disease start MS?" is something a nonLLMD might say yes to, with the refinement that Lyme doesn't 'start' MS, but can have an effect similar to MS, that is: the immune system attacking the body.
But that doesn't work in my view, because it avoids entirely the question of whether Lyme can be killed with a few weeks of antibiotics, which is a major point of contention between LLMDs and nonLLMDs.
Here's the rub: Lyme, like the bacteria that cause Hansen's disease (aka leprosy) and tuberculosis (TB), has a very slow reproductive cycle. It is when reproducing that bacteria are most susceptible to antibotics, because the cell wall is splitting. 'Normal' bacteria reproduce every 20 minutes; Lyme bacteria reproduce about every 7 hours, or about 20 times more slowly than nonLyme. Why nonLLMDs don't take this into account, I don't know. Standard treatment for TB is 18 months of antibiotics, but nonLLMDs get all crazy about LLMDs prescribing abx for longer than a few weeks. I've never seen a defense of this from the nonLLMDs. If you find one, let me know.
Also, Lyme bacteria hide inside slimy shields they create in the body, called biofilms. Think of the biofilms as sanctuary: the immune system can't kill what it can't detect.
Back to your question: can Lyme cause or trigger MS? No.
"4) Can MS drugs be helpful (because it does appear that it helped stop some progression)?"
See discussion of steroids in Lyme being a bad thing. If Copaxone is not a steroid, as it seems to my reading, then it might not hurt, but I don't know that the amino acids that make up Copaxone have any killing effect on Lyme bacteria. I would tend to doubt it, but again: not medically trained here.
"5) What were some of your early symptoms?"
Brain fog, fatigue, generally unwell. Like a cross between the flu and a bad hangover, 24/7.
"6) Can treatment for Lyme Disease help someone that has it 15 years after the initial symptoms?"
Yes, I don't know why not, but that's a question for an LLMD.
The docs you have seen, neuros and infectious disease docs especially, generally do not 'believe' in Lyme and do not understand it. I went through 20 MDs before getting a diagnosis, when in desperation a kindly internist ran a Lyme test on me. It came back mildly positive, but the nice doc said softly: "Oh, you can't possibly have Lyme; I have patients with Lyme, and they ... are ... all ... near ... death." Great, thanks.
Oh, another point. MRIs are not particularly diagnostic of Lyme. LLMDs use another kind of scan called a SPECT scan, which looks for blood flow in the brain, not for the lesions seen in MS. Inflammation from Lyme causes swelling, and swelling in the brain restricts blood flow: so a SPECT scan shows how well the blood is flowing. MRIs don't do that kind of work.
Do you have Lyme? I don't know. But in your situation, I would find an LLMD for a work up. Finding an LLMD can be tricky, esp in a state like Texas, but I would try anyway. It sure beats being sick forever.
There is apparently a Texas Lyme disease association at txlda [dot] org, but be a skeptic at all times. Many of these websites are run by amateurs like me, and we (I) run off at the mouth without have the credentials to back it up. But given the state of the medical profession, I figure doing something is better than doing nothing.
I am still digging my way out the five-year hole Lyme put in my life, but so very glad to be back in the land of the cognizant. It's worth the effort.
You may not have Lyme, but in your situation I would put some effort into at least ruling it out as a possibility.
Best wishes -- let us know how you do, okay?
Looks like you may be in Texas, given your screen name. If so, be aware that Texas is one of the states where the medical authorities are very much against any progressive view and treatment of Lyme, so even more than in many places, you may find it difficult to get a straight-up consultation from a doc who has an open mind. Not impossible, but it may take some snooping around even more than the rest of us go through. Just fyi. There is, I believe a Texas Lyme disease association that may be helpful.
That said, good for you for thinking bigger thoughts than your docs are. You may be aware that there is a fixed orthodoxy in so-called mainstream medicine about what Lyme is and is not and how to treat it or not. Docs who have open minds toward Lyme as a complex disease not easily cured by a couple weeks of antibiotics are often referred to by patients as LLMDs, shorthand for Lyme-Literate MDs, meaning open-minded: not a formal designation and no doc calls him/herself and LLMD.
You give a good history --- this is much to your advantage. One symptom in some of us with Lyme is poor memory, and you don't seem to have that, which is good news for you. (Lyme has many symptoms and effects, different in everyone and different in the same person over time, and some of us get more neurological involvement than others. Also complicating the situation is that the ticks that carry Lyme often -- perhaps half the time -- carry other diseases with different symptoms and requiring different treatment.)
My comments on your questions are below:
"1) What are your experiences with the rash--if you've had one (I know you don't necessarily have to have this or see a tick bite)? Please tell me if it migrated, was itchy, etc."
Many of us never have rashes, or may have them on the scalp etc. where we don't see them. The look of the rashes also varies from person to person. If you search online (such as in google images) for lyme rash you will find a lot of photos. (I just typed lyme rash into the google search bar, then on the left side of the screen that comes up, clicked on 'images' and lots and lots of them show up.) Rash is helpful in diagnosis, but not required.
"2) Does Lyme Disease cause optic neuritis that's so often seen in MS?"
I believe the answer is yes; google lyme optic neuritis. Lots of hits.
"3) Can Lyme Disease start MS?"
Here's where things get tricky. MS is an autoimmune disease, in which the immune system gets confused and attacks the host body (us). To my knowledge, there is not much understanding of what causes MS, and treatments are given which suppress the immune response.
Lyme on the other hand is a bacterial infection. Suppressing the immune system in a bacterial infection is the opposite of what one would think makes sense, and many here and elsewhere have worsened after being put on steroids, which suppress the immune system, which is valiantly fighting against Lyme, a bacterial infection. Steroids are the general class of meds used against MS.
I looked up Copaxone, which you have been given. It appears (and I am NOT medically trained!!!) that Copaxone is not a steroid, but a combination of amino acids that may act as a decoy for whatever is causing the illness. Copaxone use and effectiveness seems to be questioned by some in what I read.
That said, back to your question: "Can Lyme disease start MS?"
Some nonLLMDs (meaning mainstream medicine) have tried to explain away the fact that those diagnosed with Lyme and treated with a few weeks of antibiotics (abx) then relapse or don't improve much at all. The nonLLMDs hypothesize that the short course of abx has actually killed the Lyme bacteria, but the immune system is on overdrive and continues to try to kill what is no longer there -- and this over-reaction is considered auto-immune: the body's immune system attacking the body.
That's what MS does too, so your question "Can Lyme Disease start MS?" is something a nonLLMD might say yes to, with the refinement that Lyme doesn't 'start' MS, but can have an effect similar to MS, that is: the immune system attacking the body.
But that doesn't work in my view, because it avoids entirely the question of whether Lyme can be killed with a few weeks of antibiotics, which is a major point of contention between LLMDs and nonLLMDs.
Here's the rub: Lyme, like the bacteria that cause Hansen's disease (aka leprosy) and tuberculosis (TB), has a very slow reproductive cycle. It is when reproducing that bacteria are most susceptible to antibotics, because the cell wall is splitting. 'Normal' bacteria reproduce every 20 minutes; Lyme bacteria reproduce about every 7 hours, or about 20 times more slowly than nonLyme. Why nonLLMDs don't take this into account, I don't know. Standard treatment for TB is 18 months of antibiotics, but nonLLMDs get all crazy about LLMDs prescribing abx for longer than a few weeks. I've never seen a defense of this from the nonLLMDs. If you find one, let me know.
Also, Lyme bacteria hide inside slimy shields they create in the body, called biofilms. Think of the biofilms as sanctuary: the immune system can't kill what it can't detect.
Back to your question: can Lyme cause or trigger MS? No.
"4) Can MS drugs be helpful (because it does appear that it helped stop some progression)?"
See discussion of steroids in Lyme being a bad thing. If Copaxone is not a steroid, as it seems to my reading, then it might not hurt, but I don't know that the amino acids that make up Copaxone have any killing effect on Lyme bacteria. I would tend to doubt it, but again: not medically trained here.
"5) What were some of your early symptoms?"
Brain fog, fatigue, generally unwell. Like a cross between the flu and a bad hangover, 24/7.
"6) Can treatment for Lyme Disease help someone that has it 15 years after the initial symptoms?"
Yes, I don't know why not, but that's a question for an LLMD.
The docs you have seen, neuros and infectious disease docs especially, generally do not 'believe' in Lyme and do not understand it. I went through 20 MDs before getting a diagnosis, when in desperation a kindly internist ran a Lyme test on me. It came back mildly positive, but the nice doc said softly: "Oh, you can't possibly have Lyme; I have patients with Lyme, and they ... are ... all ... near ... death." Great, thanks.
Oh, another point. MRIs are not particularly diagnostic of Lyme. LLMDs use another kind of scan called a SPECT scan, which looks for blood flow in the brain, not for the lesions seen in MS. Inflammation from Lyme causes swelling, and swelling in the brain restricts blood flow: so a SPECT scan shows how well the blood is flowing. MRIs don't do that kind of work.
Do you have Lyme? I don't know. But in your situation, I would find an LLMD for a work up. Finding an LLMD can be tricky, esp in a state like Texas, but I would try anyway. It sure beats being sick forever.
There is apparently a Texas Lyme disease association at txlda [dot] org, but be a skeptic at all times. Many of these websites are run by amateurs like me, and we (I) run off at the mouth without have the credentials to back it up. But given the state of the medical profession, I figure doing something is better than doing nothing.
I am still digging my way out the five-year hole Lyme put in my life, but so very glad to be back in the land of the cognizant. It's worth the effort.
You may not have Lyme, but in your situation I would put some effort into at least ruling it out as a possibility.
Best wishes -- let us know how you do, okay?
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