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BlsdMama

Lyme - Gimme whatcha got.

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It is confirmed - I do not have MS.  The doctor said that it is a 5% chance or less that I could have MS and not have anything showing on the tests.  I suspect the next step will be to re-test with an EMG.  I was not having fasciculations when we did the last EMG.

 

Scares me to death to think about ALS, so.......

So I choose Lyme.  It can twitch too.  :P ;)  

I jest, but I really did have a black legged tick bite.  I requested my spinal fluid be tested for Lyme and it was present - Apparently the test is negative though.  So quantitatively it found 0.12 and positive is not until 1.0.  But doesn't that seem odd to you?  I had a bite (granted in 2008 - medically documented) and I have Lyme present in the spinal fluid but the test is negative? Hm. 

 

I will take any and all resources you can link me to.

 

 

I am being referred on to someone else in the neuro clinic who is not in the MS Clinic.  It will be interesting (or terrifying) to see who they schedule me with.

The twitching is worse. Last night my right arm twitched and twitched and twitched.  Today I helped a man who fell in front of me at Costco.  I  suspect he had ALS, could scarcely walk.  He was wearing a Vet hat. I think my heart is broken.  I was grateful to be able to help but it was an overwhelming moment for me.  

 

But Lyme is often misdiagnosed as MS and as ALS.

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A friend of ours has 2 granddaughters that had Lyme disease.  They are from the midwest and were misdiagnosed numerous times.  With their own research, they stumbled upon Lyme disease & finally were diagnosed.  One of them had much more serious symptoms, but they both traveled to AZ to be treated - I think it might have been at Envita??  But, I know it was a long process of treatment - several weeks.  

 

They are now healthy and show no effects of having had Lyme disease. 

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I am not an expert at all, but I have read that the fasciculations in ALS come at the end, when something stops working. Many times they don't even feel the fasciculations. I believe they are also progressive and not random. They would start at end of the nerves first.

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You need to be evaluated by an LLMD.  Go to Lymenet.org and post in Seeking a Doctor, ask someone to send you a list of LLMDs in your area.

 

My Lyme diagnosis was very tricky.  I said on another thread that I was misdiagnosed for years - it was ugly.  The quicker you get diagnosed, the better.  I'd send you the name of my LLMD, but I am on the east coast, and I think  you are not?  

 

You'll want to be tested for co-infections as well.

 

FWIW, from what I've read - our symptoms are/were similar.  ((hugs)) Don't hesitate to reach out, if you need help.

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I completely concur with Spryte.  DH is still 2 years later dealing with his Lyme and cycling through medication.  It has been hard.  He had many false negatives and then had a huge flare up.  He saw a fantastic internal medicine doctor who felt that he needed to be treated for Lyme regardless of the test results (he also has alpha-gal so she said she knows he has had previous tick "encounters").  After a few weeks he started to feel better.  He still goes through spells where he is completely without energy and very foggy.  But, the right doctors have helped him manage.  Hugs - I'm sure this has been a scary road for you so far.

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Ask your doctors to start treating you for Lyme while you also schedule an appointment with a highly regarded specialist. Assume you've got it until you find out you don't. As spryte said, Lyme is tricky.

 

If there are no good specialists in your area, I would recommend traveling to see one. It's worth it if your local doctors aren't experienced enough.

 

I'm so relieved to hear it's not MS, and I truly doubt it's ALS, but your symptoms could definitely be Lyme.

 

Praying you get some definitive answers soon. All of this waiting and worrying must be horrible. :grouphug:

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If you were pregnant after the tick bite, get the baby or babies tested as well. I hope you find answers quickly. :grouphug:

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Find yourself a lyme literate doctor right now.

My dh has been disabled for years now from Lyme and it's confection friends.

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An acquaintance of mine has been fighting Lyme for several years, and has learned so much in the process, she and her husband have started a Facebook community just for Lyme support and information.  The page is called Lyme Voice.  Check it out at https://www.facebook.com/Lyme-Voice-1557989807801733/

Edited by Suzanne in ABQ
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You've alread gotten good feedback here! I can't offer any extra info, but just want to cheer you on in being proactive about your diagnosis and treatment. If you think it's Lyme or another tick borne illness, be the annoying squeaky wheel. Don't let anyone dismiss you easily.

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FWIW - I verifiably had Lyme late last summer. Got the Doxy. Blood test says I'm "cured."

 

But for the past few months I've had weird symptoms that originally got put down to tendonitis due to overuse. But I have "tendonitis" everywhere. Tendonitis doesn't spread.

 

I'm pretty sure I have peripheral neuropathy. I have an appointment with a specialist in a few weeks. PN can by caused by Lyme. I had Lyme. But I'm not supposed to have Lyme anymore. So I feel like I'm in a huge medical black hole.

 

Which is to say - Sure, you might have got Lyme at some point. But so what? You can take a load of Doxy and other antibiotics and maybe it will help a little. I'm "cured" and still have symptoms.

 

Go to the neurologist, get the neurological disorder diagnosis. Neurological disorders are almost always caused by something. So then you can start working backward and eliminating causes. Lyme is only one of many tick-borne infection. You might be the lucky duck who got infected with something rare that isn't usually screened for. Even if you aren't diagnosed as having Lyme, maybe then you can get treatment for having an inflammatory infection. Which would be the same outcome as being diagnosed with Lyme, yeah, but you'll get treatment, and that's what matters.

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I am so glad to hear you do not have MS.  Lyme is a bitch, some of the coinfections are even worse (I'm looking at you bartonella)  but there is hope indeed.  Do find an LLMD, ours saved our daughter's life.  At this point, I would pick up Dr. Horowitz's book, Why Can't I Get Better, fantastic information in that one.  There are many treatment modalities but our daughter's included rotating iv antibiotics, herbals and supplements for over two years.  BUT she had gone undiagnosed for over 8 years and then had been treated improperly for a year because our primary didn't know any better and neither did we.  Being proactive is the best thing you can do for yourself.  Hugs to you and please reach out if you need anything at all.

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I joined the forums - thank you for that.

I just had a Lyme list sent to me.  My neuro is ordering a Lyme titer - it's covered by insurance so it is easy enough to do.  I'd love it if that were to pop positive.  If anyone would like to pray in that direction I am taking that tomorrow.  

 

Does anyone else think it is weird that there were Lyme antibodies in my spinal fluid - even if it was low?  I think that's odd.  Doesn't that just point that if it I am making antibodies, even teensy tiny amounts, that I have been exposed to Lyme bacteria?  I should think so.

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The Lyme tests that mainstream Dr's run often come back negative plus most do not believe that lyme can be chronic because that is what they are taught in Med school.  And...there is a whole political side to Lyme that goes back decades.

 

You need to contact one of the LLMD's on the list that you received.  They will likely run tests through a company called Igenex which tests for lyme and its confections.  The LLMD may also be able to dx just based on your symptoms and get you started on meds.  Make a VERY thorough list of any and all symptoms you have had since the bite in 2008.  A typical treatment of 14 days of Doxy is not enough to get rid of lyme and co.

 

I agree with a previous poster, if you had children since that bite in 2008, they may have congenital lyme.  Both of my kids did.

 

 

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Yes, please read up on why the testing for Lyme is not reliable, why your doc may tell you your test was "negative" even though you can actually have Lyme.  Know that your Lyme titer they've sent off may be a "negative" but you may still have Lyme.  Quest and Labcorp are notoriously bad for testing Lyme.  There's a long, complex, crazy political story as to why that is, but for your purposes - which is to get diagnosed - just know that you will likely get a "negative" result.  A positive would be a surprise, but if you get one - you still need an LLMD, because you want someone *very* experienced with treating Lyme patients.  

 

In short, there are two camps in the Lyme world.  Both are a group of physicians who have released peer-reviewed treatment and diagnosis guidelines.  The IDSA's guidelines, which most neurologists and rheumatologists have accepted, say essentially that Lyme is hard to catch, easy to treat, and once you've completed that treatment any lingering symptoms are post-infection syndrome.  And you'll live with those symptoms, treating them as Lupus, or fibromyalgia or whatever - for the rest of your life.  The other group of physicians, ILADS, basically says that Lyme is easy to catch and very hard to treat.  Any lingering symptoms mean that you have not been thoroughly treated, and you should continue treatment till you are symptom free and well, and you don't have to live with a slew of diagnoses and treatment for the rest of your life.

 

When I was faced with the long list of diagnoses that I carried for years... and then learned about the intricacies of Lyme treatment and the difference in guidelines, it was a no-brainer to me.  I wanted to be evaluated by an LLMD.  LLMD means Lyme Literate Doc, who generally follows the ILADS guidelines.  I strongly encourage you to go to the ILADS website, read up, read on Lymenet or some other place, watch the documentary Under Our Skin, buy Horowitz' book, ask here.  All of it.  I waited 6 months to get in with my LLMD.  

 

If you have Lyme antibodies in your spinal fluid - you need an LLMD.  If you have Lyme antibodies in your spinal fluid and your Lyme titer comes back from Quest or Labcorp or wherever, and it's miraculously positive - you still need an LLMD.

 

FWIW, my journey to getting diagnosed was a rollercoaster.  The craziest thing was I had tested positive for Lyme DNA - and getting a positive PCR test for Lyme is a long-shot, but proof positive that one has Lyme - but my Lyme titers were still negative.  My body simply had stopped producing antibodies against Lyme by that time.  I was infected for so long.  A good article on that, though old, is called something like:  Lyme, A Microbiology Tutorial.  I will try to come back with a link, but the author did a great job explaining why our bodies might not produce antibodies.

 

I hope you get answers, and help, and I hope that treatment is soon and that you feel better and better.  When you do start treatment, it could be rough.  Don't hesitate to reach out for support from all of us here, I bet many of us have experienced the Herx Train pulling up in the front yard... yowsers.  (A herxheimer reaction happens when the spirochetes start to die off, and can feel like having the flu.  It's not fun, but it's manageable, especially with a good LLMD.)

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Your body will usually show Lyme antibodies after an infection - is there a chance that is what the .12 is? Honestly, I think 2008 is too far back for this to currently be the issue.... unless you had another bite ;)

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Your body will usually show Lyme antibodies after an infection - is there a chance that is what the .12 is? Honestly, I think 2008 is too far back for this to currently be the issue.... unless you had another bite ;)

 

OP, I can't tell you how strongly I disagree with this.  Sorry, mamaofgirls, I don't know you, and don't want to be rude, but I want OP to know that one can be infected long term before getting diagnosed.

 

I was infected at 11 years old.  We have the health records, with my documented bullseye rash at the time.  But when I was 11, Lyme wasn't even named yet.  I was seriously ill at the time.  I went into remitting and relapsing for years at that point.  And at some point I spiraled down to the point there was no more remitting, some time in my late, late 20s, early 30s.  I lost my 30s to chasing down a diagnosis (my story was eerily similar to the saga that OP has posted), and getting treated.

 

You can absolutely be infected long term, and you can absolutely not produce antibodies to Lyme, especially if you've had it untreated long-term.

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This sounds like what a friend went through with Lyme. She was also misdiagnosed with a lot of really serious things and also had serious symptoms like yours before finally figuring it out. She really went through the gamut and it made her not trust Western medicine completely.

 

One thing she told me which I didn't see mentioned that seems relevant is that she had it for so long that she passed it to her kids in the womb and... to her husband. She said that some people believe now that it can be sexually transmitted. :(

 

Lyme is so crazy. I feel blessed that our only interaction with it was found quickly and cured immediately.

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This sounds like what a friend went through with Lyme. She was also misdiagnosed with a lot of really serious things and also had serious symptoms like yours before finally figuring it out. She really went through the gamut and it made her not trust Western medicine completely.

 

One thing she told me which I didn't see mentioned that seems relevant is that she had it for so long that she passed it to her kids in the womb and... to her husband. She said that some people believe now that it can be sexually transmitted. :(

 

Lyme is so crazy. I feel blessed that our only interaction with it was found quickly and cured immediately.

This is what I'm afraid of with DS. He had a bullseye rash after a bite and his insurance wouldn't approve the medication for 4 days. :cursing:  It makes me wonder if something will show up later in his life. :(

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Your body will usually show Lyme antibodies after an infection - is there a chance that is what the .12 is? Honestly, I think 2008 is too far back for this to currently be the issue.... unless you had another bite ;)

 

Bullseye rash-1992

Diagnosed-2011

Two kids with congenital lyme

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Bullseye rash-1992

Diagnosed-2011

Two kids with congenital lyme

 

That was a sympathetic like, in case it wasn't obvious.

 

((hugs))

 

Lyme stinks.

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This is what I'm afraid of with DS. He had a bullseye rash after a bite and his insurance wouldn't approve the medication for 4 days. :cursing:  It makes me wonder if something will show up later in his life. :(

 

I wouldn't freak out. It took us three days at least to realize that ds was sick because of the rash. The people who have problems are the people who had it for *years* without any diagnosis. Even if he shows signs of issues, you already have the diagnosis and can treat it. 

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This is what I'm afraid of with DS. He had a bullseye rash after a bite and his insurance wouldn't approve the medication for 4 days. :cursing:  It makes me wonder if something will show up later in his life. :(

 

I wouldn't worry too much either.  It's the people who go undiagnosed and untreated for years that are in trouble.  Or if someone is undertreated.  Say, they only get a 10 course for an acute case when the minimum should really be 28 days to cover the entire life cycle of the spirochete, and when they stop their abx, the infection isn't gone.

 

A real life example, from a mom who is very Lyme cautious: my DS was infected over the summer.  He didn't present with typical symptoms, and most of the focus was on the viral meningitis he contracted at the same time.  It was six weeks before we realized that he had Lyme and Babesiosis as well.  I'm not overly worried, even with the six week delay in treatment because he was thoroughly treated when we figured it out.

 

So, a four day delay would annoy me, but I wouldn't be worried that your son will have major repercussions throughout life.

 

Did you guys treat at a bacteriocidal dose (bacteria killing)?  A dose that's too low will sometimes stop the spirochetes from replicating, so can make one feel better, but not kill the spirochetes.  So the dose has to be right, and it has to be a long enough course to cover the entire life cycle of the spirochete, as the abx only kill the spirochete at particular points in it's life cycle.  

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I wouldn't worry too much either. It's the people who go undiagnosed and untreated for years that are in trouble. Or if someone is undertreated. Say, they only get a 10 course for an acute case when the minimum should really be 28 days to cover the entire life cycle of the spirochete, and when they stop their abx, the infection isn't gone.

 

A real life example, from a mom who is very Lyme cautious: my DS was infected over the summer. He didn't present with typical symptoms, and most of the focus was on the viral meningitis he contracted at the same time. It was six weeks before we realized that he had Lyme and Babesiosis as well. I'm not overly worried, even with the six week delay in treatment because he was thoroughly treated when we figured it out.

 

So, a four day delay would annoy me, but I wouldn't be worried that your son will have major repercussions throughout life.

 

Did you guys treat at a bacteriocidal dose (bacteria killing)? A dose that's too low will sometimes stop the spirochetes from replicating, so can make one feel better, but not kill the spirochetes. So the dose has to be right, and it has to be a long enough course to cover the entire life cycle of the spirochete, as the abx only kill the spirochete at particular points in it's life cycle.

He took them for a month. I hope it was enough.

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He took them for a month. I hope it was enough.

 

He had just been infected?  I'd feel comfortable with that, for my own kids.  Just watch for odd, unexplainable symptoms and keep good records of everything.  

 

I hope he never has issues again!

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He had just been infected?  I'd feel comfortable with that, for my own kids.  Just watch for odd, unexplainable symptoms and keep good records of everything.  

 

I hope he never has issues again!

It was a few weeks after the tick was found that he developed the rash. I tool him in to urgent care that night and he was on meds 4 days later.

 

Just looked up my thread from here. It was 3 weeks post-bite that I saw the rash.

Edited by Miss Peregrine
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OP, I can't tell you how strongly I disagree with this.  Sorry, mamaofgirls, I don't know you, and don't want to be rude, but I want OP to know that one can be infected long term before getting diagnosed.

 

I was infected at 11 years old.  We have the health records, with my documented bullseye rash at the time.  But when I was 11, Lyme wasn't even named yet.  I was seriously ill at the time.  I went into remitting and relapsing for years at that point.  And at some point I spiraled down to the point there was no more remitting, some time in my late, late 20s, early 30s.  I lost my 30s to chasing down a diagnosis (my story was eerily similar to the saga that OP has posted), and getting treated.

 

You can absolutely be infected long term, and you can absolutely not produce antibodies to Lyme, especially if you've had it untreated long-term.

 

I've been reading a lot.... Yes, unfortunately it tends to lie dormant from what I'm seeing. Some think there is a link between a light dose of doxy and more significant problems later.  There is a case of a schoolteacher (diagnosed with ALS initially) that is in this group.  He ended up with neuro Lyme - didn't make it. :(  I am in the doxy light category if indeed this is what is going on.

 

 

This sounds like what a friend went through with Lyme. She was also misdiagnosed with a lot of really serious things and also had serious symptoms like yours before finally figuring it out. She really went through the gamut and it made her not trust Western medicine completely.

 

One thing she told me which I didn't see mentioned that seems relevant is that she had it for so long that she passed it to her kids in the womb and... to her husband. She said that some people believe now that it can be sexually transmitted. :(

 

Lyme is so crazy. I feel blessed that our only interaction with it was found quickly and cured immediately.

 

I was actually just told this.  :(

 

Bullseye rash-1992

Diagnosed-2011

Two kids with congenital lyme

 

 

(((Hugs))) :(

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I've been reading a lot.... Yes, unfortunately it tends to lie dormant from what I'm seeing. Some think there is a link between a light dose of doxy and more significant problems later.  There is a case of a schoolteacher (diagnosed with ALS initially) that is in this group.  He ended up with neuro Lyme - didn't make it. :(  I am in the doxy light category if indeed this is what is going on.

 

Well, that's kind of scary... in 2000, I had the bullseye rash that I am certain came from a tick bite, and was prescribed only a 14 day course of doxycycline.  Been generally healthy since then, but I guess I now know what to suspect if weird symptoms start popping up in me or my family members.

 

I hope you find some answers soon, BlsdMama!

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Well, that's kind of scary... in 2000, I had the bullseye rash that I am certain came from a tick bite, and was prescribed only a 14 day course of doxycycline.  Been generally healthy since then, but I guess I now know what to suspect if weird symptoms start popping up in me or my family members.

 

I hope you find some answers soon, BlsdMama!

 

My understanding is that the best practice is now to give longer because it's not enough to knock it out in some people... but it is enough for many or maybe even most. You're probably fine. But if you were to experience some of these symptoms, you would know to bring it up.

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FWIW - I verifiably had Lyme late last summer. Got the Doxy. Blood test says I'm "cured."

 

But for the past few months I've had weird symptoms that originally got put down to tendonitis due to overuse. But I have "tendonitis" everywhere. Tendonitis doesn't spread.

 

I'm pretty sure I have peripheral neuropathy. I have an appointment with a specialist in a few weeks. PN can by caused by Lyme. I had Lyme. But I'm not supposed to have Lyme anymore. So I feel like I'm in a huge medical black hole.

 

Which is to say - Sure, you might have got Lyme at some point. But so what? You can take a load of Doxy and other antibiotics and maybe it will help a little. I'm "cured" and still have symptoms.

 

Go to the neurologist, get the neurological disorder diagnosis. Neurological disorders are almost always caused by something. So then you can start working backward and eliminating causes. Lyme is only one of many tick-borne infection. You might be the lucky duck who got infected with something rare that isn't usually screened for. Even if you aren't diagnosed as having Lyme, maybe then you can get treatment for having an inflammatory infection. Which would be the same outcome as being diagnosed with Lyme, yeah, but you'll get treatment, and that's what matters.

Have you taken any fluoroquinolone class antibiotics? I don't believe they're used for Lyme treatment, but I have two close friends with peripheral neuropathy caused by those drugs. Not meaning to hijack the thread--just a brainstorm if it's not Lyme-related for you.

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Have you taken any fluoroquinolone class antibiotics? I don't believe they're used for Lyme treatment, but I have two close friends with peripheral neuropathy caused by those drugs. Not meaning to hijack the thread--just a brainstorm if it's not Lyme-related for you.

 

 

I don't think so. At least, I haven't taken any antibiotic since the Doxy last Fall. I'm allergic to sulfa's, so maybe I got some of that at some point?

 

It's a good point, though, thanks. I'm hoping that the specialist will just cross everything that didn't cause this off the list, and see what we're left with.

 

 

To the OP: you did have your B12 checked, yes? That was in the thread a few weeks back, or am I mixing things up? I asked my GP to check mine, just one of those cross it off things. I'm kinda ticked that my B12 came back as high average, a B12 deficiency is so easy to cure (comparatively).

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Well, that's kind of scary... in 2000, I had the bullseye rash that I am certain came from a tick bite, and was prescribed only a 14 day course of doxycycline.  Been generally healthy since then, but I guess I now know what to suspect if weird symptoms start popping up in me or my family members.

 

I hope you find some answers soon, BlsdMama!

 

This is my story, almost exactly, except mine was in 2004.  Bullseye rash that absolutely came from a tick bite, and a 2 week rx for abx.  Fortunately, I've been generally healthy ever since. 

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The Lyme test coming in negative but still having Lyme and Lyme antibodies in your fluids is not unheard of. There is a researcher out there who had Lyme, was "cured" (but knew better because if how he felt), intentionally put a clean tick on himself that was not Lyme infected, took the tick off, and found Lyme DNA in the tick. Clearly, the tick got it from the researcher, even though he had been deemed cured. Can't remember where I saw this research, but it struck me as troublesome for people who have been called cured.

 

I joined the forums - thank you for that.

 

I just had a Lyme list sent to me. My neuro is ordering a Lyme titer - it's covered by insurance so it is easy enough to do. I'd love it if that were to pop positive. If anyone would like to pray in that direction I am taking that tomorrow.

 

Does anyone else think it is weird that there were Lyme antibodies in my spinal fluid - even if it was low? I think that's odd. Doesn't that just point that if it I am making antibodies, even teensy tiny amounts, that I have been exposed to Lyme bacteria? I should think so.

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You need to be evaluated by an LLMD.  Go to Lymenet.org and post in Seeking a Doctor, ask someone to send you a list of LLMDs in your area.

 

My Lyme diagnosis was very tricky.  I said on another thread that I was misdiagnosed for years - it was ugly.  The quicker you get diagnosed, the better.  I'd send you the name of my LLMD, but I am on the east coast, and I think  you are not?  

 

You'll want to be tested for co-infections as well.

 

FWIW, from what I've read - our symptoms are/were similar.  ((hugs)) Don't hesitate to reach out, if you need help.

 

 

Hey Spryte,

 

Did you ever have fasciculations?  Did you have drop leg?  Lose muscle mass?

 

Measured my calves yesterday and the right leg is 1/2" smaller than the left with noticeably difference muscle mass in the calf of right vs. left.

 

My neuro just retired and as this is "non-emergency" because nothing is dx'd, my next appointment is November.  November.  

 

 

I have no idea what to do.  I didn't pay any attention lately because I was sure I'd get the MS diagnosis and I'd really LIKE a Lyme diagnosis. Lyme is a helluva lot better than ALS. But the muscle loss is noticeable now.  Thought I might be imagining it and asked DH.  He sees it.  It is visibly different and feels very different. Can Lyme do this or am I just holding out hope for Lyme because I know the alternative?  

 

Can't decide what to do next.  Wrote the new doctor explaining November isn't really an option as my twitching is getting worse and he told me there were no fasciculations noted on exam and then told me a nice little bit about how when his class studied fasciculations in medical school that they all twitched some... Benign Fasciculation Syndrome.  Well, yes, jerkface, I've read about that too.  Did your whole class imagine a clinical drop foot, note weakness, have  clonus, and hyperreflexia too?  Just curious.

 

So I am thinking - head to the family doctor, have him verify the muscle problem and then refer to the first neuro who referred me to U of Iowa.  I think she'll do a repeat EMG if I ask.  If that's dirty, then a referral to Mayo?  If my voice begins to go I am going to lose my ability to advocate for myself. :( No tongue fasciculations yet.  :(

 

I am forty by one freaking month.

I really am grateful my kids are healthy, that I have a warm house, a great husband, and all of that.  But I really think this sucks.  And I am choosing to wallow in it for a little bit today. :( :( :( :(

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Hey Spryte,

 

Did you ever have fasciculations? Did you have drop leg? Lose muscle mass?

 

Measured my calves yesterday and the right leg is 1/2" smaller than the left with noticeably difference muscle mass in the calf of right vs. left.

 

My neuro just retired and as this is "non-emergency" because nothing is dx'd, my next appointment is November. November.

 

 

I have no idea what to do. I didn't pay any attention lately because I was sure I'd get the MS diagnosis and I'd really LIKE a Lyme diagnosis. Lyme is a helluva lot better than ALS. But the muscle loss is noticeable now. Thought I might be imagining it and asked DH. He sees it. It is visibly different and feels very different. Can Lyme do this or am I just holding out hope for Lyme because I know the alternative?

 

Can't decide what to do next. Wrote the new doctor explaining November isn't really an option as my twitching is getting worse and he told me there were no fasciculations noted on exam and then told me a nice little bit about how when his class studied fasciculations in medical school that they all twitched some... Benign Fasciculation Syndrome. Well, yes, jerkface, I've read about that too. Did your whole class imagine a clinical drop foot, note weakness, have clonus, and hyperreflexia too? Just curious.

 

So I am thinking - head to the family doctor, have him verify the muscle problem and then refer to the first neuro who referred me to U of Iowa. I think she'll do a repeat EMG if I ask. If that's dirty, then a referral to Mayo? If my voice begins to go I am going to lose my ability to advocate for myself. :( No tongue fasciculations yet. :(

 

I am forty by one freaking month.

I really am grateful my kids are healthy, that I have a warm house, a great husband, and all of that. But I really think this sucks. And I am choosing to wallow in it for a little bit today. :( :( :( :(

((((Hugs)))))

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OP - I like your idea of going back to your family doc, then back to the first neuro and ask for that referral to Mayo.  I certainly wouldn't wait until November for any doctor if I was in your shoes.

 

Hugs.

 

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OP, no advice but praying for answers. It is so hard to keep pressing on and advocating for yourself when you don't feel well.

 

 I agree with the prior posters indicating to push that referral to Mayo if you can.  A lot of neurological conditions are best treated early on, although many are also hard to diagnose, so getting to an experienced diagnostician as soon as possible would be really wise.  

 

Thankful for all the wisdom on here about Lyme--I really don't know anything about it, but I have learned from you all.  

 

 

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Hey, FWIW, and I really don't know if you have Lyme or not, but there is a saying in the Lyme world:  "Hold the Mayo."  That refers back to those two separate and completely different sets of guidelines on the diagnosis and treatment of Lyme, etc.  Mayo will use the IDSA diagnosis/treatment protocol.  So if you do suspect Lyme - use that list of LLMDs, if you want to be treated with the ILADS guidelines.  I would.   :)

 

To put that in perspective:  I have two close family friends, people I grew up with, and were like uncles to me.  They were both misdiagnosed by Mayo.  One went on to Johns Hopkins, still didn't get good answers that made sense, went on to find an LLMD, and improved. He leads a normal life now.   The other stuck with Mayo and eventually developed ALS.  About 4 months before he died, he discovered that he had Lyme.  Of course, they started treating it, but he was gone fast after that.   :(

 

I know those are anecdotal stories on the internet.  But they were (are) both real people to me.  I could probably find an article about my family friend who had ALS, he was a fairly well known crafts person.  

 

 

Edited by Spryte
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