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For those in Limbo.....
Hi Everyone:
My post may be a little long, but if it helps even one person, then it will be worth the read.
My MS-like symptoms came on almost overnight almost a year ago. I had had gallbladder surgery two weeks prior to my symptoms starting. I have had SO MANY symptoms this last year...numbness, tingling, vibrating, you name it. I was SURE I had MS. Yesterday though, I saw an LLMD (Lyme Literate MD) in San Francisco who confirmed that what I am suffering from is LYME Disease.
Here's a rundown of how this all finally came to be:
As my symptoms started, I saw two different Neuros. All anxiety they said. I had also began seeing a new family doctor. At first I really liked her but after a while, she would dismiss my foot pain as my shoes being too tight, or my tingling as anxiety or an overworked muscle, etc. I had told her I suspected Lyme (this was early on...last April maybe). I had ordered a blood test kit from IGeneX (they specialize in Lyme and are where people submit their blood to all over the world I hear). Anyway, I needed her to sign the lab slip but she refused and threw the kit away and said I didn't need that. She ordered a basic Lyme test from a regular lab. It came back negative.
Fast forward maybe 5-6 months later in December 2010, I'm sent to UCSF MS Dept. I have my brain MRI done. On my first appt my neuro said I have 20 small and scattered unusual lesions not typical for MS. First question he asks me, is "Have you had Lyme Disease?". Of course, I said no, because my lab test said I did not. We do loads of other tests, all come back negative. I also had a lumbar puncture in which they tested for Lyme, but it too was negative. (I was told yesterday that only 20% of people infected with Lyme will show in the CSF)
In November and in a very depressed, anxiety ridden emotional state, I started looking at the possibly of Lyme again so I changed family doctors, got another kit and had my blood work done. The results went to the family doctor who said she wasn't sure how to read the results however, it looks negative. I picked up my lab work, and glanced through it assuming she knew what she was doing and figured...okay, negative. There was a lot of different tests, and I'll agree, they looked negative.
THEN last week, I think someone from the heavens above made me pull out that test and start looking at it again. I think I looked at it for two hours when I realized that it was POSTIVE for Lyme with a Co-Infection of Human ehrlichiosis. The feeling I had at that moment was an "ah ha" moment and I knew in my heart that this was my answer. I immediately got onto the Lyme forum and was directed on how to find the appropriate doctor. You must go to an LLMD. I went to one in San Francisco yesterday. (My appt was originally not until April, then moved up to February and they called me yesterday morning with a cancellation, and off I went with my husband).
He confirmed that I in-deed had Lyme with the ehrlichiosis co-infection and said I may have more co-infections and ordered a ton of more blood tests. I started my medication last night and could hardly get myself to sleep because I felt sooooo excited and relieved that I FINALLY have an answer!!!
I hope for those of you in Limbo Land, that you will at least look into the possibility of Lyme. However, if you do, please be sure to call the IGeneX lab (you can google their #). They will overnight a blood testing kit to you, you will have to have your doctor sign it and then take it to a lab for a draw and then overnight the stuff back to them. It isn't cheap but isn't our health, well being and quality of life worth the extra cost?? Of course it is!
My LLMD said IGeneX only look for lyme and their co-infections and they are good at what they do. He also explained why normal lab tests don't pick up the Lyme however, I can't remember exactly why...
Also, not everyone will remember having a tick bite (in my case, I know I was bitten by a tick...but it was when I was a kid). Ticks can be as small as the period at the end of this sentence I've read. Many people, like myself, don't even realize they have Lyme disease or may not even know they've been bitten by a tick until they develop neourological symptoms. And trust me, they mimic MS symptoms so closely. If you are having symptoms and your being told you DO NOT have MS, then maybe you really don't!!! Trust me, I've cried over this almost every day for nearly a year and was SURE I had MS.
I do probably have a long road ahead of me towards recovery, but I WILL recover!
I hope and pray that this helps someone.
Thank you for listening...
Carrie
My post may be a little long, but if it helps even one person, then it will be worth the read.
My MS-like symptoms came on almost overnight almost a year ago. I had had gallbladder surgery two weeks prior to my symptoms starting. I have had SO MANY symptoms this last year...numbness, tingling, vibrating, you name it. I was SURE I had MS. Yesterday though, I saw an LLMD (Lyme Literate MD) in San Francisco who confirmed that what I am suffering from is LYME Disease.
Here's a rundown of how this all finally came to be:
As my symptoms started, I saw two different Neuros. All anxiety they said. I had also began seeing a new family doctor. At first I really liked her but after a while, she would dismiss my foot pain as my shoes being too tight, or my tingling as anxiety or an overworked muscle, etc. I had told her I suspected Lyme (this was early on...last April maybe). I had ordered a blood test kit from IGeneX (they specialize in Lyme and are where people submit their blood to all over the world I hear). Anyway, I needed her to sign the lab slip but she refused and threw the kit away and said I didn't need that. She ordered a basic Lyme test from a regular lab. It came back negative.
Fast forward maybe 5-6 months later in December 2010, I'm sent to UCSF MS Dept. I have my brain MRI done. On my first appt my neuro said I have 20 small and scattered unusual lesions not typical for MS. First question he asks me, is "Have you had Lyme Disease?". Of course, I said no, because my lab test said I did not. We do loads of other tests, all come back negative. I also had a lumbar puncture in which they tested for Lyme, but it too was negative. (I was told yesterday that only 20% of people infected with Lyme will show in the CSF)
In November and in a very depressed, anxiety ridden emotional state, I started looking at the possibly of Lyme again so I changed family doctors, got another kit and had my blood work done. The results went to the family doctor who said she wasn't sure how to read the results however, it looks negative. I picked up my lab work, and glanced through it assuming she knew what she was doing and figured...okay, negative. There was a lot of different tests, and I'll agree, they looked negative.
THEN last week, I think someone from the heavens above made me pull out that test and start looking at it again. I think I looked at it for two hours when I realized that it was POSTIVE for Lyme with a Co-Infection of Human ehrlichiosis. The feeling I had at that moment was an "ah ha" moment and I knew in my heart that this was my answer. I immediately got onto the Lyme forum and was directed on how to find the appropriate doctor. You must go to an LLMD. I went to one in San Francisco yesterday. (My appt was originally not until April, then moved up to February and they called me yesterday morning with a cancellation, and off I went with my husband).
He confirmed that I in-deed had Lyme with the ehrlichiosis co-infection and said I may have more co-infections and ordered a ton of more blood tests. I started my medication last night and could hardly get myself to sleep because I felt sooooo excited and relieved that I FINALLY have an answer!!!
I hope for those of you in Limbo Land, that you will at least look into the possibility of Lyme. However, if you do, please be sure to call the IGeneX lab (you can google their #). They will overnight a blood testing kit to you, you will have to have your doctor sign it and then take it to a lab for a draw and then overnight the stuff back to them. It isn't cheap but isn't our health, well being and quality of life worth the extra cost?? Of course it is!
My LLMD said IGeneX only look for lyme and their co-infections and they are good at what they do. He also explained why normal lab tests don't pick up the Lyme however, I can't remember exactly why...
Also, not everyone will remember having a tick bite (in my case, I know I was bitten by a tick...but it was when I was a kid). Ticks can be as small as the period at the end of this sentence I've read. Many people, like myself, don't even realize they have Lyme disease or may not even know they've been bitten by a tick until they develop neourological symptoms. And trust me, they mimic MS symptoms so closely. If you are having symptoms and your being told you DO NOT have MS, then maybe you really don't!!! Trust me, I've cried over this almost every day for nearly a year and was SURE I had MS.
I do probably have a long road ahead of me towards recovery, but I WILL recover!
I hope and pray that this helps someone.
Thank you for listening...
Carrie
One of the experts on Lyme's disease is the doctor who identified it in Connecticut. His Name is Dr. Allen Steere. He is an opponent of the view that Lyme's is a chronic disease process. There are several documented cases for the disease fully resolving and people being reinfected with Borrelia burgdorferi.
I'm pretty familiar with Dr. Steere and Lyme's Disease since I was one of the first group of kids diagnosed with Lyme's in 1975/76. The current IGeneX test is pretty good. The normal test just looks for antibody titers, and the IGeneX test does that along with PCR testing for Borrelia burgdorferi DNA fragments and associated diseases.
In Lyme's, it is not the common woodland tick that carries the disease, but a deer tick. Within a short time of being bitten, about a quarter of the victims will normally develop a spreading rash called erythema migrans. There are a few antibiotics that seem to work well against active infections of Borrelia burgdorferi. When I started having neurologic symptoms about a year ago, I contacted Dr. Steere at Tufts/Mass General and described my symptoms to him and the results of my Lyme's titers. He felt that the titers were at convalescent levels and that my symptoms were a new and distinct disease process. Nine months later, I was diagnosed with RRMS.
Lyme's, while a great imitator, is also a catchall disease. Lyme's get implicated along with MS, CFS, Fibro, etc. for any problem that is "hard to diagnose." The common thread here is that all of these are diagnosed by exclusion.
Bob
I'm pretty familiar with Dr. Steere and Lyme's Disease since I was one of the first group of kids diagnosed with Lyme's in 1975/76. The current IGeneX test is pretty good. The normal test just looks for antibody titers, and the IGeneX test does that along with PCR testing for Borrelia burgdorferi DNA fragments and associated diseases.
In Lyme's, it is not the common woodland tick that carries the disease, but a deer tick. Within a short time of being bitten, about a quarter of the victims will normally develop a spreading rash called erythema migrans. There are a few antibiotics that seem to work well against active infections of Borrelia burgdorferi. When I started having neurologic symptoms about a year ago, I contacted Dr. Steere at Tufts/Mass General and described my symptoms to him and the results of my Lyme's titers. He felt that the titers were at convalescent levels and that my symptoms were a new and distinct disease process. Nine months later, I was diagnosed with RRMS.
Lyme's, while a great imitator, is also a catchall disease. Lyme's get implicated along with MS, CFS, Fibro, etc. for any problem that is "hard to diagnose." The common thread here is that all of these are diagnosed by exclusion.
Bob
Thanks for your post! I just posted something in the forum, as I am currently trying to get a diagnosis and am being told it could be anything and everything under the sun from seizures or migraines to MS to anxiety. I did ask my family doctor about Lyme Disease, but she brushed it off entirely and didn't even run a test. I did have a tick bite about 10 years ago, but have only been experiencing symptoms for the last 1-2 years. I wonder if that could be consistent with Lyme?
I wish you luck in treating your disease, and I'm very happy that you have some answers. Hope I'll have some soon too!
Zoe
I wish you luck in treating your disease, and I'm very happy that you have some answers. Hope I'll have some soon too!
Zoe
I can relate to the relief to finally have someone listen to you, and to start treatment instead of people just brushing you off. I had the anxiety stress thing too as one of my many it's in your head kind of doctor experiences. I don't know much about lime. Hope you respond to the treatment and get cured or remission or the best outcome whatever they call it!
Hi there:
Thank you for your post. It was very good. Also, the part you mentioned about the cost and the government I believe is what my LLMD mentioned. Apparently the testing is not senstive enough (or something like that) and to change the procedures or whatever would cost a TON of money.
I'll watch for your on the Lyme Forum and I hope that you are able to get tested soon.
Carrie
Thank you for your post. It was very good. Also, the part you mentioned about the cost and the government I believe is what my LLMD mentioned. Apparently the testing is not senstive enough (or something like that) and to change the procedures or whatever would cost a TON of money.
I'll watch for your on the Lyme Forum and I hope that you are able to get tested soon.
Carrie
mucho gracias for taking the time to share with the community here. we all appreciate it and it is certain it will help someone.
Well done Carrie and I am so happy for you that you do not have MS..it must be such a relief. I think your post just goes to show that gut instinct is so often right and your perseverance and patience has paid off. Thank you for sharing your experience which is of interest to everyone (not just limbolanders) and I wish you well.
with love Sarah x
with love Sarah x
I had a LP, and, yes, it resulted in the "su!cide headache"...TERRIBLE!!! But with CSM, I have a chance of relieving the pressure of any bulging discs or osteophytes through surgery. Yes, surgery isn't 100% foolproof, but it may buy time with further disability (if, indeed, that's what's going on). I don't want to jump to any conclusions - it's just one of those things she wants to consider...
Thanks for your caring kindness, though...
(((hugs)))
Lisa
Thanks for your caring kindness, though...
(((hugs)))
Lisa
Dear Guitar_grrl,
Please rethink going through yet another test - myelogram involves lumbar puncture (ugh!). Lumbar puncture does involve some risk and I consider the one I had to be the single worst medical experience of my life - but, depending on who would be doing yours, it might be a very tame experience, or it might not be. Anyway, you said that MS and cervical spondylotic myelopathy (CSM) are not mutually exclusive - so you wouldn't have that much to gain from having the test would you? In other words, if they found CSM present, it would NOT rule out MS. And if they did not find CSM present, it would NOT rule out MS. So it looks like doing myelogram would neither confirm nor exclude your current MS diagnosis. So why do it?
Good luck in whatever you decide!
Hugs from,
WAF
Please rethink going through yet another test - myelogram involves lumbar puncture (ugh!). Lumbar puncture does involve some risk and I consider the one I had to be the single worst medical experience of my life - but, depending on who would be doing yours, it might be a very tame experience, or it might not be. Anyway, you said that MS and cervical spondylotic myelopathy (CSM) are not mutually exclusive - so you wouldn't have that much to gain from having the test would you? In other words, if they found CSM present, it would NOT rule out MS. And if they did not find CSM present, it would NOT rule out MS. So it looks like doing myelogram would neither confirm nor exclude your current MS diagnosis. So why do it?
Good luck in whatever you decide!
Hugs from,
WAF
Just goes to show you - we have to eliminate ALL mimics.
My general neuro says I have MS, my MS specialist says "no", and is leaning more toward cervical spondylotic myelopathy. I'm willing to go through a myelogram if it provides more answers, and this is one thing my general neuro has not done.
My MRI shows some classic MS lesions, but it also shows some arthritis and bulging discs in my c-spine and t-spine. The discs don't impinge on my spinal cord, but the MS doc just wants to make sure. BTW, MS and cervical spondylotic myelopathy are not mutually exclusive - I may have both.
My general neuro says I have MS, my MS specialist says "no", and is leaning more toward cervical spondylotic myelopathy. I'm willing to go through a myelogram if it provides more answers, and this is one thing my general neuro has not done.
My MRI shows some classic MS lesions, but it also shows some arthritis and bulging discs in my c-spine and t-spine. The discs don't impinge on my spinal cord, but the MS doc just wants to make sure. BTW, MS and cervical spondylotic myelopathy are not mutually exclusive - I may have both.
Carrie,
I got distracted in my earlier post and forgot to extend to you my sincerest and happiest congratulations on getting a diagnosis, an answer to your MS-like symptoms!! I'm positively thrilled for you and your family!! Now, stay out of the woods!!!!
Hugs!
WAF
I got distracted in my earlier post and forgot to extend to you my sincerest and happiest congratulations on getting a diagnosis, an answer to your MS-like symptoms!! I'm positively thrilled for you and your family!! Now, stay out of the woods!!!!
Hugs!
WAF
Dear Carrie,
I am so happy that you got an answer to your symptoms!!! Your post was great and it might just help someone in a simialr situation. Thanks for poating your experience.
I hope your treatment is a quick success! Please keep us updated! Remember mob rules...once a meber , always a member.
Good luck.,
Ren
I am so happy that you got an answer to your symptoms!!! Your post was great and it might just help someone in a simialr situation. Thanks for poating your experience.
I hope your treatment is a quick success! Please keep us updated! Remember mob rules...once a meber , always a member.
Good luck.,
Ren
Hi Carrie!
Thank you for sharing your important story with all of us Lost In Limboland. I will definately check out that Lyme test kit thing. I've lived on a farm (a hobby farm where ALL the animals find refuge...not a dinner plate) for most of my life and get those nasty little blood suckers on me regularly every summer. Ticks, I don't mind squishing!
I know finally being diagnosed with something is a hard pill to swallow, but I can also totally understand your relief cuz at least you finally have an answer and can get the "right" kind of treatment and back on the road to becoming healthy again! So, congrats! (:
I'll pray for you to have a speedy recovery!
be blessed
Diana
Thank you for sharing your important story with all of us Lost In Limboland. I will definately check out that Lyme test kit thing. I've lived on a farm (a hobby farm where ALL the animals find refuge...not a dinner plate) for most of my life and get those nasty little blood suckers on me regularly every summer. Ticks, I don't mind squishing!
I know finally being diagnosed with something is a hard pill to swallow, but I can also totally understand your relief cuz at least you finally have an answer and can get the "right" kind of treatment and back on the road to becoming healthy again! So, congrats! (:
I'll pray for you to have a speedy recovery!
be blessed
Diana
Thanks for sharing your story Carrie! I am so happy that you finally have an answer and can now move forward with treatment that will get you healthy again!
Your story is one that is important to share on this forum.
I still wonder (I am probable MS) about my dx. My dog tested positive for lymes and I live in an area with loads of deer. We pull a few ticks off him from time to time.
I had a follow up MRI this week and am seeing my neuro next week. I will bring this up to him. My second opinion neuro wasn't so sure about the MS. They ruled out lymes but I'm not sure which test they did. I have lesions that aren't classic for MS (I think one is) - others are kind of scattered in the deep white matter. My LP was negative for o bands and IgG - just high for myelin basic protein. My point is that I don't fit neatly in the MS box, but they are treating me with DMDs.
SO your posting is very timely for me. Thanks so much for taking the time to share.
Best of luck to you in your recovery. Please let us know how things go for you!
Carol
Your story is one that is important to share on this forum.
I still wonder (I am probable MS) about my dx. My dog tested positive for lymes and I live in an area with loads of deer. We pull a few ticks off him from time to time.
I had a follow up MRI this week and am seeing my neuro next week. I will bring this up to him. My second opinion neuro wasn't so sure about the MS. They ruled out lymes but I'm not sure which test they did. I have lesions that aren't classic for MS (I think one is) - others are kind of scattered in the deep white matter. My LP was negative for o bands and IgG - just high for myelin basic protein. My point is that I don't fit neatly in the MS box, but they are treating me with DMDs.
SO your posting is very timely for me. Thanks so much for taking the time to share.
Best of luck to you in your recovery. Please let us know how things go for you!
Carol
Thanks for sharing your story Carrie! I am so happy that you finally have an answer and can now move forward with treatment that will get you healthy again!
Your story is one that is important to share on this forum.
I still wonder (I am probable MS) about my dx. My dog tested positive for lymes and I live in an area with loads of deer. We pull a few ticks off him from time to time.
I had a follow up MRI this week and am seeing my neuro next week. I will bring this up to him. My second opinion neuro wasn't so sure about the MS. They ruled out lymes but I'm not sure which test they did. I have lesions that aren't classic for MS (I think one is) - others are kind of scattered in the deep white matter. My LP was negative for o bands and IgG - just high for myelin basic protein. My point is that I don't fit neatly in the MS box, but they are treating me with DMDs.
SO your posting is very timely for me. Thanks so much for taking the time to share.
Best of luck to you in your recovery. Please let us know how things go for you!
Carol
Your story is one that is important to share on this forum.
I still wonder (I am probable MS) about my dx. My dog tested positive for lymes and I live in an area with loads of deer. We pull a few ticks off him from time to time.
I had a follow up MRI this week and am seeing my neuro next week. I will bring this up to him. My second opinion neuro wasn't so sure about the MS. They ruled out lymes but I'm not sure which test they did. I have lesions that aren't classic for MS (I think one is) - others are kind of scattered in the deep white matter. My LP was negative for o bands and IgG - just high for myelin basic protein. My point is that I don't fit neatly in the MS box, but they are treating me with DMDs.
SO your posting is very timely for me. Thanks so much for taking the time to share.
Best of luck to you in your recovery. Please let us know how things go for you!
Carol
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I went to the Lyme site a little before you, but, haven't been tested by IGeneX labs yet.
I had a positive Lyme test via the traditional lab route 2 full years ago, but had the misfortune of being referred (by my PMD) to an infectious disease specialist! Big mistake! That jerk just told me I could not possibly have Lyme because it is not a chronic disease!! Then he billed my insurance company $400 for that incorrect statement! Imagine!!
It's great that you decided to question your doctor's casual statement that, even though she wasn't sure how to read it, your test seemed negative. Sheesh!! Shouldn't a caring doctor who isn't sure how to read a test, find another professional who does know how to read such tests and have the test read by that knowledgeable doctor? That would require caring - something too often missing in American medicine today.
For those of you Limbolanders out there as well as those of you diagnosed with MS, please, please learn from carrie235's post more than just about the possibility of Lyme. Please learn from her post how very important it is, in today's times, to take full responsibility for your own medical well-being by staying informed, researching, scrutinizing lab test results, keeping good records of all tests or notes from your treating physician, and questioning any pronouncement from a treating MD that just doesn't seem right to you. The real important lesson here, in my opinion, is you have to recognize that, bottom line, it's your life and health, that you, not the MD, are really the one in charge, the one who will pay dearly for any errors or carelessness. Think for yourself and don't just submissively accept what any medical professional may hand you that doesn't sound right. Even when something does sound right, a little research to back it up could be enlightening. I'm so sorry I just blindly trusted that infectious disease doctor's erroneous statement years ago, thinking he knew the field best. What time I've wasted!
Lyme, like MS, can be demyelinating according to the book "Cure Unknown" by Pamela Weintraub. "Cure Unknown" is an excellent book (somewhat challenging reading) that will open your eyes to the governmental influence on medicine and how the official Lyme diagnostic requirements were set to exclude many people with Lyme disease as a cost-cutting measure so insurance companies wouldn't have to pay for treatment. Read it and become more aware.
Incidentally, Dr David Martz, firmly diagnosed with ALS by an ALS expert, had himself treated for Lyme just in case Lyme was what he really had. Guess what? It saved his life - he's a new man today because of that treatment! So that was the case of an MD questioning the diagnosis from another MD.
Morale of the story: Never stop thinking and choosing for yourselves medically!
WAF