Aa
greatly needed opinions
I have been diagnosed with m.s. I have brain demyelinating lesions, I have had 2 episodes of double vision. Knee pain, mood swings. I was bitten by a tick 14 years ago and had a rather large rash. At the time I was clueless about tick bites. I have been bitten other times by them also. My neurologist does not acknowledge this, seeing I had the tick bite so long ago. He did a lyme titre came back positive then did a progressive lyme which came back neg. So he is just going with M.S. I strongly feel like it is Lyme. I have had a spinal tap. Does anyone know of any distinct differences between the two?
I haven't read all of the above, so apologies if my response is redundant.
To answer the original q, how to distinguish MS/Lyme, my advice is that Lyme actually causes MORE symptoms. (This is surprising to folks because MS is the more serious, uncurable disease.) MS can only affect the nervous system, and is degenerative. Lyme is systemic and can affect just about all of the body! But it is treatable.
Joint pain is a big one: MS alone will not cause joint pain, but it is common with Lyme.
To answer the original q, how to distinguish MS/Lyme, my advice is that Lyme actually causes MORE symptoms. (This is surprising to folks because MS is the more serious, uncurable disease.) MS can only affect the nervous system, and is degenerative. Lyme is systemic and can affect just about all of the body! But it is treatable.
Joint pain is a big one: MS alone will not cause joint pain, but it is common with Lyme.
Colloidal silver can help with some pathogens, but please don't believe it will cure a case of neuro Lyme in 3 weeks. It simply can't get to all the spirochetes hidden away in your body. If you want to take a natural approach for now, I encourage you to read up on the popular ones out there and choose one that works for you. Even the natural treatment approach can involve several different components at once.
Sorry it took so long to get back with everyone. I still don't understand the progressive lyme test they told me they did. O anyways, The lyme Ab Scrn QST result was 1.53. the reference range is<= 0.90. so that was positive, then they did a progressive lyme QST.several papers they say Rheumatois factor QST 8 ref. range <14. RPR QI Non Reactive. ACE QST.24 ref. range 9-67.Still wasn't explained to properly about all the tests.
So I am taking matters into my own hands, I am not going to search for a Lyme Literate doctor, I am treating myself. I have decided to take Silver Shield for 3 weeks, I was told it can take care of the Lyme. I have also been eating better, and exercising. I am done with doctors right now. I go to an M.S. specialist in December. I am interested in what he may have to say. I am hoping for another MRI. To see if the lesions had stopped. This is my 3rd day taking the Silver Shield. I have had a dull headache, and at times I feel like I can vomit..Was told the shield does not make you sick, the killing off the Lyme does. I have never been so excited about not feeling well. Like I said I have to do this for 3 weeks, I'm only on day 3.I will keep everyone up to date. I am so happy to have people to talk to.
So I am taking matters into my own hands, I am not going to search for a Lyme Literate doctor, I am treating myself. I have decided to take Silver Shield for 3 weeks, I was told it can take care of the Lyme. I have also been eating better, and exercising. I am done with doctors right now. I go to an M.S. specialist in December. I am interested in what he may have to say. I am hoping for another MRI. To see if the lesions had stopped. This is my 3rd day taking the Silver Shield. I have had a dull headache, and at times I feel like I can vomit..Was told the shield does not make you sick, the killing off the Lyme does. I have never been so excited about not feeling well. Like I said I have to do this for 3 weeks, I'm only on day 3.I will keep everyone up to date. I am so happy to have people to talk to.
I wish I had read this before I wrote a new post. So much info and very interesting about the flu jab because I ended up in bed for two weeks after a flu jab.
Depressing to know their is so much ignorance in the medical profession regarding Lymes but its so good to be informed about the correct avenues to go down.
Depressing to know their is so much ignorance in the medical profession regarding Lymes but its so good to be informed about the correct avenues to go down.
I will definitely get back to you when I pick up the blood results, This makes perfect sense that usually a lyme titre never comes back positive, the assistant said he had to call an infectious disease doctor to see what to do with this result. If he is familiar with these things, you would think he would know what to do. Like I said I will definitely share the results when I pick them up. Thank you for your time talking with me.
I am another one of those patients with Lyme whose symptoms mimicked MS. And I have brain lesions, too. I had been given steroids, when sent me downhill fast and into the ER. Steroids and immunosuppressants are devastating for a Lyme infected person, as they suppressed antibody production and allows the Lyme to get even more entrenched. We've seen more than one person on this forum who was (mis)diagnosed with MS and then got sicker on the MS meds.
(I encourage you to avoid a flu vaccine,too. They have mercury in them, which, in a neuro patient goes straight into the brain. One of those sent me spiralling down, too. )
Lyme testing is a disaster. It is sadly the exact opposite of what doctors were taught. The Lyme titer is almost never false positive and the interpretation used for the 2nd test, a Western Blot, (never heard the phrase "progressive test"), can say "negative" even when it shows antibodies for Lyme. Makes no sense.
The CDC interpretation for the Western Blot was designed for a narrow, strict surveillance criteria with a really low false positive rate, and no concern for the false negative rate. They said they didn't want to count every single case of Lyme, just a sample to watch trends.
When it was first introduced, they said it was NOT for diagnosis. But 4 years later, in conjunction with the IDSA, they announced it as a diagnostic requirement, in spite of loud complaints from many patients and doctors. Instead of acknowledging that Lyme was wide spread and spreading, they felt they needed to stop all this fear and "over diagnosing" of the disease with a stricter test.
They left Lyme specific bands/antibodies OFF the test because a Lyme vaccine might have caused a false negative, but then didn't put them back in when the vaccine failed. They require a certain number of bands, too. You can actually show 4 Lyme specific or highly indicative antibodies on the IgG portion of the Western Blot and they'll still say you don't have Lyme.
Even worse, they'll say the test excludes Lyme, even though researchers have known for decades that antibodies change over time. A patient with Lyme can test "negative" and then "positive" a month later and then "negative" another month later.
People with neurologic Lyme seem to me to be more likely to test false negative, as do people who've had it for a long time (years). Over time, the bacteria move out of the blood into tissues, and antibody production drops. My doctor's PA told me that it's usually their sickest patients who test false negative on even IGeneX antibody tests.
The CSF test for Lyme is interesting. I was told I did not have Lyme because my CSF test was negative and "It's a HIGHLY accurage test." Well, my research showed that it's highly accurate only when it's positive. When it's negative, it's meaningless. The bacteria rarely hang out in the CSF, so there's few antibodies there. The bacteria prefers tissues.
I read of one ILADS doctor who said he only saw positive results in about 30% of the patients who had CSF tests. I saw another report that only 3% of children with neuro Lyme who had CSF tests turned up positive.
I encourage you to get copies of all test results. Some labs don't show the bands on a Western Blot when it's negative. They just report "negative." But if they did, and you're willing to share it anonymously with us, we could comment on which bands you show.
Ideally you'll get another Western Blot at IGeneX, a specialty lab that does more advanced testing. It would take an open minded doctor (or an LLMD) to order tests there as they're not a big mainstream lab. You have to pay up front, but then you can file with your insurance for some reimbursement.
And you'll need to find a LLMD. Late stage neuro Lyme is rarely resolved with the standard 4 weeks of Rocephin that the IDSA and CDC say should be used. It usually takes much longer than that. Only a LLMD will do that for you.
You might check with a local Lyme support group. They often know doctors in the area who are good and who aren't for treating Lyme. Ideally, you want one affiliated with ILADS.
I'm glad you're probing into this. There are enough cases of people who previously had Lyme and later developed MS to say that they could be connected. But there are also plenty of stories of people with MS-like illness who turned out to have Lyme.
I am not a doctor, just a patient who has read a lot. Sometimes I have to read something multiple times before I remember it! :) I just think it's worthwhile for you to see a doctor about Lyme who is not beholden to absolutes and knows how to read a Western Blot.
(I encourage you to avoid a flu vaccine,too. They have mercury in them, which, in a neuro patient goes straight into the brain. One of those sent me spiralling down, too. )
Lyme testing is a disaster. It is sadly the exact opposite of what doctors were taught. The Lyme titer is almost never false positive and the interpretation used for the 2nd test, a Western Blot, (never heard the phrase "progressive test"), can say "negative" even when it shows antibodies for Lyme. Makes no sense.
The CDC interpretation for the Western Blot was designed for a narrow, strict surveillance criteria with a really low false positive rate, and no concern for the false negative rate. They said they didn't want to count every single case of Lyme, just a sample to watch trends.
When it was first introduced, they said it was NOT for diagnosis. But 4 years later, in conjunction with the IDSA, they announced it as a diagnostic requirement, in spite of loud complaints from many patients and doctors. Instead of acknowledging that Lyme was wide spread and spreading, they felt they needed to stop all this fear and "over diagnosing" of the disease with a stricter test.
They left Lyme specific bands/antibodies OFF the test because a Lyme vaccine might have caused a false negative, but then didn't put them back in when the vaccine failed. They require a certain number of bands, too. You can actually show 4 Lyme specific or highly indicative antibodies on the IgG portion of the Western Blot and they'll still say you don't have Lyme.
Even worse, they'll say the test excludes Lyme, even though researchers have known for decades that antibodies change over time. A patient with Lyme can test "negative" and then "positive" a month later and then "negative" another month later.
People with neurologic Lyme seem to me to be more likely to test false negative, as do people who've had it for a long time (years). Over time, the bacteria move out of the blood into tissues, and antibody production drops. My doctor's PA told me that it's usually their sickest patients who test false negative on even IGeneX antibody tests.
The CSF test for Lyme is interesting. I was told I did not have Lyme because my CSF test was negative and "It's a HIGHLY accurage test." Well, my research showed that it's highly accurate only when it's positive. When it's negative, it's meaningless. The bacteria rarely hang out in the CSF, so there's few antibodies there. The bacteria prefers tissues.
I read of one ILADS doctor who said he only saw positive results in about 30% of the patients who had CSF tests. I saw another report that only 3% of children with neuro Lyme who had CSF tests turned up positive.
I encourage you to get copies of all test results. Some labs don't show the bands on a Western Blot when it's negative. They just report "negative." But if they did, and you're willing to share it anonymously with us, we could comment on which bands you show.
Ideally you'll get another Western Blot at IGeneX, a specialty lab that does more advanced testing. It would take an open minded doctor (or an LLMD) to order tests there as they're not a big mainstream lab. You have to pay up front, but then you can file with your insurance for some reimbursement.
And you'll need to find a LLMD. Late stage neuro Lyme is rarely resolved with the standard 4 weeks of Rocephin that the IDSA and CDC say should be used. It usually takes much longer than that. Only a LLMD will do that for you.
You might check with a local Lyme support group. They often know doctors in the area who are good and who aren't for treating Lyme. Ideally, you want one affiliated with ILADS.
I'm glad you're probing into this. There are enough cases of people who previously had Lyme and later developed MS to say that they could be connected. But there are also plenty of stories of people with MS-like illness who turned out to have Lyme.
I am not a doctor, just a patient who has read a lot. Sometimes I have to read something multiple times before I remember it! :) I just think it's worthwhile for you to see a doctor about Lyme who is not beholden to absolutes and knows how to read a Western Blot.
I am not familiar with the term 'progressive Lyme', so don't know what they are referring to. Please let us know what you find out about the test, and be sure to get hard copy of the test results for your own personal files.
Hang in there!
Hang in there!
Exactly. I so don't want to go down that road..How did you get diagnosed with Lyme? What kind of testing was done? Best of wishes to you and your friend.
I was told on the phone by the Medical assistant that they did a progressive Lyme. Not sure what that means either. I am going to get a copy of this next week of all the blood tests. I was told on the Lyme titre that they do come back positive a lot?, but once they do the progressive then it can be ruled out. I will let you know exactly what the test is when I get a copy. Thank you for taking the time with this. Talking with others is very encouraging.
I was one of those with brain lesions and told I have MS among other things but found out it was Lyme.
My pharmacists friend spent 20 years in a wheel chair with MS then she heard of Lyme and was tested for it. She is now walking. 20 years wasted.
My pharmacists friend spent 20 years in a wheel chair with MS then she heard of Lyme and was tested for it. She is now walking. 20 years wasted.
PS -- re your comment that "He did a lyme titre came back positive then did a progressive lyme which came back neg."
The 'usual' Lyme tests are well known to indicate negative results when Lyme is actually present, because Lyme has the ability to suppress the human immune system, and it is your body's immune reaction to the presence of the Lyme bacteria that the test is looking for.
If there is no immune reaction (whether because you don't have Lyme OR because the Lyme is suppressive your immune system), then the docs will usually say you don't have Lyme. That your 'Lyme titre' came back positive shows, to my understanding, that your immune system is fighting the infection. Either you have a strong immune system that continues to act, or it's possible you also got another tick bite recently and didn't notice it, but it could be causing your immune system to ramp up.
I never saw a tick or a bite on me, and many of us never do ... sometimes it's the because the bite was hidden (on the scalp, for example), or looked like another kind of bite, or you just didn't see it, or your immune system under-reacted. Lots of reasons are possible. That's why the tests are supposed to aid in the diagnosis, not rule it.
There is a newer test than the Western blot/ELISA combo, called a PCR test, short for 'polymerase chain reaction', which instead of looking for your [possibly suppressed] immune system reaction to the presence of Lyme, a PCR test looks for actual Lyme bacteria DNA -- a direct indicator rather than an indirect one.
NonLLMDs usually stick with the Wblot/ELISA test combo, because they are used to it and think it's sufficient, but an LLMD will likely use the PCR test. My LLMD ran all of them on me, and he was surprised that my reaction to the Wblot/ELISA was as strong as it was -- it meant that my immune system was still strong. (He may have run all the tests out for some research he was doing and needed the data; I dunno.)
Okay, that's probably WAY more than you wanted to know, but thought I'd throw it out there. I'm not sure what a 'progressive' Lyme test is, but it may just be another way of describing the usual tests. Take care! Let us know how we can help.
The 'usual' Lyme tests are well known to indicate negative results when Lyme is actually present, because Lyme has the ability to suppress the human immune system, and it is your body's immune reaction to the presence of the Lyme bacteria that the test is looking for.
If there is no immune reaction (whether because you don't have Lyme OR because the Lyme is suppressive your immune system), then the docs will usually say you don't have Lyme. That your 'Lyme titre' came back positive shows, to my understanding, that your immune system is fighting the infection. Either you have a strong immune system that continues to act, or it's possible you also got another tick bite recently and didn't notice it, but it could be causing your immune system to ramp up.
I never saw a tick or a bite on me, and many of us never do ... sometimes it's the because the bite was hidden (on the scalp, for example), or looked like another kind of bite, or you just didn't see it, or your immune system under-reacted. Lots of reasons are possible. That's why the tests are supposed to aid in the diagnosis, not rule it.
There is a newer test than the Western blot/ELISA combo, called a PCR test, short for 'polymerase chain reaction', which instead of looking for your [possibly suppressed] immune system reaction to the presence of Lyme, a PCR test looks for actual Lyme bacteria DNA -- a direct indicator rather than an indirect one.
NonLLMDs usually stick with the Wblot/ELISA test combo, because they are used to it and think it's sufficient, but an LLMD will likely use the PCR test. My LLMD ran all of them on me, and he was surprised that my reaction to the Wblot/ELISA was as strong as it was -- it meant that my immune system was still strong. (He may have run all the tests out for some research he was doing and needed the data; I dunno.)
Okay, that's probably WAY more than you wanted to know, but thought I'd throw it out there. I'm not sure what a 'progressive' Lyme test is, but it may just be another way of describing the usual tests. Take care! Let us know how we can help.
Welcome to MedHelp Lyme --
I'm not medically trained, but have read that Lyme can and is sometimes diagnosed as MS, because the medical profession is taught that Lyme is quite rare, hard to get, and easy to cure. That is the official position of groups such as the Infectious Disease Society of America (IDSA), which is a large, well known voluntary group for MDs who practice in ... yes, the infectious disease ('ID') field.
Unfortunately, the senior-most MDs in IDSA have not kept up with more recent research over the decades, and there is now a similar group for MDs who understand better the difficulties of dealing with Lyme. That group is call the International Lyme and Associated Diseases Society (called ILADS for short). ILADS-type docs are sometimes called by patients 'LLMDs', which is in turn short for 'Lyme-literate medical doctors' -- in other words, docs who understand all the things about Lyme that the ILADS docs ignore.
'Lyme' is caused by a spiral-shaped bacterium formally named Borrelia burgdorferi, which is in the same family as the bacteria that cause the (often sexually transmitted) disease of syphilis. Syphilis was, in the days before antibiotic medicines, sometimes called the 'great pretender', because its symptoms looked like so many other diseases that the docs were often confused.
Well, Lyme has produced the same confusion as syphilis did among many docs, but the good news is that there are excellent and wise MDs who DO understand Lyme and how to diagnose and treat it. In your situation, I would definitely find one of those Lyme specialists for a work up.
There is not much respect held by nonLLMDs for Lyme specialists, but that's just the way it is, so I would not let it slow me down. I personally went through 20 highly trained and experienced MDs in a city with lots of excellent MDs and medical centers ... and none of them diagnosed Lyme, until Doc #20, in desperation, tested me for Lyme. The test came back positive! ... but the doc said I could not possibly have Lyme. Whaaaa????
It happens that I have a lifelong friend back East who had Lyme years ago, and when I heard that magic word, I knew where to go: to a Lyme doc. And that is what I would do in your situation, without delay. If you do not have Lyme, a Lyme doc will tell you that.
The next trick is finding a Lyme doc. Any infectious disease (ID) doc will tell you that s/he treats Lyme, but the problem is that ID docs, for the most part, don't believe Lyme to be anything particularly serious ... just as you are already finding with your neurologist. Many MDs who would in a rational world be up to date on Lyme simply aren't, and they can be particularly stubborn. That means you may have to travel to find an LLMD, but it is worth it.
I just searched online for -- lyme disease indiana -- and found some great leads! Here is part of a newspaper article I found in that search:
---------------------------------------------------------------
BLOOMINGTON, Ind. (AP) - Susan Coleman Morse suffered with Lyme disease for 16 years before it was finally diagnosed in 2012.
The 44-year-old Monroe County woman wishes she had those years back. But rather than waste time wallowing in self-pity, she’s formed a support group for Lyme disease sufferers, and is trying to educate the general public about the importance of early diagnosis and treatment.
“Going forward, I want to focus on education, especially with Lyme disease becoming more prevalent,” she told The Herald-Times (http://bit.ly/1mn0YTB ). [more available online]
---------------------------------------------------------------------------
It looks like you are not toooo far from Bloomington, and you might even contact the lady quoted in that article to find out how to get in touch with Lyme specialists and support groups etc.
And that was just one of the many links I found in a google search!
But back to the first step: whether you actually have Lyme. To rule that in or out, it will take imo a Lyme specialist, because neurologists (as you already saw) and others like infectious disease (ID) docs are sadly among the MDs who least understand Lyme and its co-infections (other diseases often carried by the 'Lyme' ticks).
But back to your situation again. I have read that a misdiagnosis of MS is not uncommon for those with Lyme. The docs pick the disease that has the symptom match closest to what you report, but unfortunately, many otherwise excellent MDs simply do not 'believe' in Lyme as anything but rare, hard to get, and easy to cure with a couple weeks of antibiotics. Wrong, wrong, and wrong. Lyme is definitely curable, but it takes more than a few weeks of meds due to peculiar characteristics of Lyme bacteria.
Knee pain is fairly common in Lyme, because the Lyme bacteria like to hide in areas of low blood flow, where the human immune system doesn't easily go. So the bacteria hide in cartilage, which the knees have lots of. Lyme also affects the endocrine system, and thus mood swings can result.
That you had a known tick bite and a big rash is amazing!! Many of us (including me) never saw a tick, never saw a bite OR a rash. So you have symptoms that a good doc would take as a big clue to possible Lyme.
Sadly, neurologists are among the specialists who least believe in Lyme as anything serious, so I'm not surprised that the neuro you saw blew off the possibility of Lyme. ... And that's why you need to see a Lyme specialist.
-->> AND you even had a positive Lyme test!!! <<--
Like many neuros and infectious disease docs, who *should* be most understanding and wise about things like Lyme, the neuro you saw is simply drinking the koolaid.
A spinal tap is not, to my not-medically-trained understanding, particularly diagnostic of Lyme, tho I believe it's possible that Lyme bacteria can be found in spinal fluid (?) but it's generally not where Lyme docs go hunting, since there are easier ways to make the diagnosis.
If you have copies of all these tests, however, take them with you when you see an LLMD, because the tests will read entirely differently to a Lyme specialist than to the other docs you have already seen. If you don't have copies of the tests and don't want to contact you previous docs, then I wouldn't worry about doing so. Finding a Lyme-aware doc is the most important thing.
I spent some years in beautiful southern Ohio, so I know how buggy it is and am not surprised that Lyme would be there and in Indiana (and Kentucky and Illinois and ... well, it's everywhere).
In your situation, I'd get a work up from a Lyme specialist before deciding to go with the other treatments that your docs have suggested. I'm not medically trained, so all this is just what I've picked up along the way dealing with Lyme -- but Lyme really is everywhere, and often ignored by docs.
Let us know how you do, okay? Best wishes to you --
I'm not medically trained, but have read that Lyme can and is sometimes diagnosed as MS, because the medical profession is taught that Lyme is quite rare, hard to get, and easy to cure. That is the official position of groups such as the Infectious Disease Society of America (IDSA), which is a large, well known voluntary group for MDs who practice in ... yes, the infectious disease ('ID') field.
Unfortunately, the senior-most MDs in IDSA have not kept up with more recent research over the decades, and there is now a similar group for MDs who understand better the difficulties of dealing with Lyme. That group is call the International Lyme and Associated Diseases Society (called ILADS for short). ILADS-type docs are sometimes called by patients 'LLMDs', which is in turn short for 'Lyme-literate medical doctors' -- in other words, docs who understand all the things about Lyme that the ILADS docs ignore.
'Lyme' is caused by a spiral-shaped bacterium formally named Borrelia burgdorferi, which is in the same family as the bacteria that cause the (often sexually transmitted) disease of syphilis. Syphilis was, in the days before antibiotic medicines, sometimes called the 'great pretender', because its symptoms looked like so many other diseases that the docs were often confused.
Well, Lyme has produced the same confusion as syphilis did among many docs, but the good news is that there are excellent and wise MDs who DO understand Lyme and how to diagnose and treat it. In your situation, I would definitely find one of those Lyme specialists for a work up.
There is not much respect held by nonLLMDs for Lyme specialists, but that's just the way it is, so I would not let it slow me down. I personally went through 20 highly trained and experienced MDs in a city with lots of excellent MDs and medical centers ... and none of them diagnosed Lyme, until Doc #20, in desperation, tested me for Lyme. The test came back positive! ... but the doc said I could not possibly have Lyme. Whaaaa????
It happens that I have a lifelong friend back East who had Lyme years ago, and when I heard that magic word, I knew where to go: to a Lyme doc. And that is what I would do in your situation, without delay. If you do not have Lyme, a Lyme doc will tell you that.
The next trick is finding a Lyme doc. Any infectious disease (ID) doc will tell you that s/he treats Lyme, but the problem is that ID docs, for the most part, don't believe Lyme to be anything particularly serious ... just as you are already finding with your neurologist. Many MDs who would in a rational world be up to date on Lyme simply aren't, and they can be particularly stubborn. That means you may have to travel to find an LLMD, but it is worth it.
I just searched online for -- lyme disease indiana -- and found some great leads! Here is part of a newspaper article I found in that search:
---------------------------------------------------------------
BLOOMINGTON, Ind. (AP) - Susan Coleman Morse suffered with Lyme disease for 16 years before it was finally diagnosed in 2012.
The 44-year-old Monroe County woman wishes she had those years back. But rather than waste time wallowing in self-pity, she’s formed a support group for Lyme disease sufferers, and is trying to educate the general public about the importance of early diagnosis and treatment.
“Going forward, I want to focus on education, especially with Lyme disease becoming more prevalent,” she told The Herald-Times (http://bit.ly/1mn0YTB ). [more available online]
---------------------------------------------------------------------------
It looks like you are not toooo far from Bloomington, and you might even contact the lady quoted in that article to find out how to get in touch with Lyme specialists and support groups etc.
And that was just one of the many links I found in a google search!
But back to the first step: whether you actually have Lyme. To rule that in or out, it will take imo a Lyme specialist, because neurologists (as you already saw) and others like infectious disease (ID) docs are sadly among the MDs who least understand Lyme and its co-infections (other diseases often carried by the 'Lyme' ticks).
But back to your situation again. I have read that a misdiagnosis of MS is not uncommon for those with Lyme. The docs pick the disease that has the symptom match closest to what you report, but unfortunately, many otherwise excellent MDs simply do not 'believe' in Lyme as anything but rare, hard to get, and easy to cure with a couple weeks of antibiotics. Wrong, wrong, and wrong. Lyme is definitely curable, but it takes more than a few weeks of meds due to peculiar characteristics of Lyme bacteria.
Knee pain is fairly common in Lyme, because the Lyme bacteria like to hide in areas of low blood flow, where the human immune system doesn't easily go. So the bacteria hide in cartilage, which the knees have lots of. Lyme also affects the endocrine system, and thus mood swings can result.
That you had a known tick bite and a big rash is amazing!! Many of us (including me) never saw a tick, never saw a bite OR a rash. So you have symptoms that a good doc would take as a big clue to possible Lyme.
Sadly, neurologists are among the specialists who least believe in Lyme as anything serious, so I'm not surprised that the neuro you saw blew off the possibility of Lyme. ... And that's why you need to see a Lyme specialist.
-->> AND you even had a positive Lyme test!!! <<--
Like many neuros and infectious disease docs, who *should* be most understanding and wise about things like Lyme, the neuro you saw is simply drinking the koolaid.
A spinal tap is not, to my not-medically-trained understanding, particularly diagnostic of Lyme, tho I believe it's possible that Lyme bacteria can be found in spinal fluid (?) but it's generally not where Lyme docs go hunting, since there are easier ways to make the diagnosis.
If you have copies of all these tests, however, take them with you when you see an LLMD, because the tests will read entirely differently to a Lyme specialist than to the other docs you have already seen. If you don't have copies of the tests and don't want to contact you previous docs, then I wouldn't worry about doing so. Finding a Lyme-aware doc is the most important thing.
I spent some years in beautiful southern Ohio, so I know how buggy it is and am not surprised that Lyme would be there and in Indiana (and Kentucky and Illinois and ... well, it's everywhere).
In your situation, I'd get a work up from a Lyme specialist before deciding to go with the other treatments that your docs have suggested. I'm not medically trained, so all this is just what I've picked up along the way dealing with Lyme -- but Lyme really is everywhere, and often ignored by docs.
Let us know how you do, okay? Best wishes to you --
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