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Lyme - relapse remitting??
Hi guys, I wasn't sure how to ask this question, my brain isn't working well today. LOL anyway,,,, Since lyme and ms are so alike, could they "show" the same way as far as come and go type symptoms, flares, and whatever?
Examples, my slurring words episodes that take on the exascerbation type, it comes on, I slurr for a week or so and then it goes away only to come back a year later.
My tremor in my left hand - started a week before Christmas, very pronounced, wide based type tremor and happened mostly when reaching or attempting to pick something up or even holding a cup or spoon, it was very pronounced for about 4 or 5 months, it started to slow down but appears daily after doing some type of activity.
I spoke with my psychologist today about "possible lyme" and he agreed that I get a referral to an LLMD. He of course said he doesn't know much about Lyme Disease to say one way or the other, but he says that I am very intelligent and I am just looking to get better, not feel worse. ( of course he made me cry happy tears)
I was just wondering if all or any of you have had your symptoms or flares have a course like this?
Thank you again,
Pam
Examples, my slurring words episodes that take on the exascerbation type, it comes on, I slurr for a week or so and then it goes away only to come back a year later.
My tremor in my left hand - started a week before Christmas, very pronounced, wide based type tremor and happened mostly when reaching or attempting to pick something up or even holding a cup or spoon, it was very pronounced for about 4 or 5 months, it started to slow down but appears daily after doing some type of activity.
I spoke with my psychologist today about "possible lyme" and he agreed that I get a referral to an LLMD. He of course said he doesn't know much about Lyme Disease to say one way or the other, but he says that I am very intelligent and I am just looking to get better, not feel worse. ( of course he made me cry happy tears)
I was just wondering if all or any of you have had your symptoms or flares have a course like this?
Thank you again,
Pam
I'm sorry that you're getting the runaround----- but have to say that most of us here have gone through that----- so we understand.
Venting is certainly allowed here---- so vent away. But a little more information might help us give a slightly more practical reply.
Questions I have (and if you're uncomfortable answering them, please just say so)
What Lyme tests did you have?
By what lab?
Have you seen an LLMD (a doctor who is supposedly more knowledgable about Lyme, although there are a few 'turkeys' out there.
My questions are mostly about Lyme, but that's the reason for this forum.
Tremors (alone) don't necessarily mean Lyme---- hence my hope that you can give us more information. Take care and keep talking to us.
Venting is certainly allowed here---- so vent away. But a little more information might help us give a slightly more practical reply.
Questions I have (and if you're uncomfortable answering them, please just say so)
What Lyme tests did you have?
By what lab?
Have you seen an LLMD (a doctor who is supposedly more knowledgable about Lyme, although there are a few 'turkeys' out there.
My questions are mostly about Lyme, but that's the reason for this forum.
Tremors (alone) don't necessarily mean Lyme---- hence my hope that you can give us more information. Take care and keep talking to us.
Help! I'm 2 yrs into tremors that are worsening, and I'm tired of tests and differing opinions & diagnosis (PD, paramoxa virus, ET, lyme, conversion disorder) that have left me w/o the answers needed for adequate treatment.
Hi Jackie, Beilieve it or not I downloaded that book the day you told me about it. LOL I have been reading when I get a chance, It is very interesting. Thank you.
Big Hugs,
Pam
Big Hugs,
Pam
If you're up for reading, there is an excellent book now in paperback, 'Cure Unknown', by Pamela Weintraub. My only quarrel is with the title -- it really doesn't convey the essence of the book. "The Battle Continues" would have been better. It's on Amazon. You can also search the name of the book and read reviews of it.
The author is a professional science journalist whose family all got Lyme in the leafy woods of CT, and the story is of their struggle to find a diagnosis and treatment, interspersed with chapters on other individuals who have been key to figuring out Lyme and the politics that affects it all. (One is Dave Martz, a scientist who was told he had ALS, or Lou Gehrig's disease, and that he would continue to deteriorate until he died. Turns out he had Lyme and got treated finally.)
The first step to fixing a problem is acknowledging and defining it, and part of what makes Lyme so frightening to patients is the murkiness and confusion in the medical community.
What made me think of the book is your description of talking with your family about "lyme, and the woods that line our backyards." Exactly so.
The author is a professional science journalist whose family all got Lyme in the leafy woods of CT, and the story is of their struggle to find a diagnosis and treatment, interspersed with chapters on other individuals who have been key to figuring out Lyme and the politics that affects it all. (One is Dave Martz, a scientist who was told he had ALS, or Lou Gehrig's disease, and that he would continue to deteriorate until he died. Turns out he had Lyme and got treated finally.)
The first step to fixing a problem is acknowledging and defining it, and part of what makes Lyme so frightening to patients is the murkiness and confusion in the medical community.
What made me think of the book is your description of talking with your family about "lyme, and the woods that line our backyards." Exactly so.
:) VERY BIG SMILE:) Thank you.
I would've never thought lyme again if I hadn't come here. I have been tested quite a few times, but they have been negative. Now that I know about how the tests don't always show positive, I am bringing this up to my family and friends. I have asked my mom if she remembers when the surgeon that took my lymph node out ,, did he put me on an antibiotic? She does not remember.
My sister started bringing things up as well, and last night we were all sitting around at my mom's house talking about the movie, and lyme, and the woods that line our backyards.
It is alllll sooooo interesting.
Pam
I would've never thought lyme again if I hadn't come here. I have been tested quite a few times, but they have been negative. Now that I know about how the tests don't always show positive, I am bringing this up to my family and friends. I have asked my mom if she remembers when the surgeon that took my lymph node out ,, did he put me on an antibiotic? She does not remember.
My sister started bringing things up as well, and last night we were all sitting around at my mom's house talking about the movie, and lyme, and the woods that line our backyards.
It is alllll sooooo interesting.
Pam
Yes, I am seeing Jemsek because my LLMD did not seem to want to treat the coinfections, and when I talked to Dr Nicolson he said "99% of the people on the Marshall Protocol do not get better from Lymes and Mycoplasmas"
Pam, you are not boring us! LOL. We are just glad you have "seen the light" and realize that you can get help, instead of foundering around like the other AI people that are comfortable in their MS, Lupus, Fibro etc diag. We just want you to get better and help you and your family out. You are on the right path.
Did you say that you see Jemsek? I couldn't remember.
Today, I watched my middle finger twitch for about 10 mins. It's the same side that my tremor is, and the same side my thumb twitches. My thumb twitched for 3 to 4 months every single day.
Bringing up the whole symptom issues again... I have had knee pain a long time ago. I thought it was caused by the line of work I did. My knees have always felt like there is no cartilige to absorb the shock, so when I step up on a stair, I cannot put too much weight into my step or it will hurt like H E ** . I always get hip/joint pain and was told it was arthritis at the age of 36.
Soooo much more... but I will not bore you with the details.
Thanks again,
Pam
Today, I watched my middle finger twitch for about 10 mins. It's the same side that my tremor is, and the same side my thumb twitches. My thumb twitched for 3 to 4 months every single day.
Bringing up the whole symptom issues again... I have had knee pain a long time ago. I thought it was caused by the line of work I did. My knees have always felt like there is no cartilige to absorb the shock, so when I step up on a stair, I cannot put too much weight into my step or it will hurt like H E ** . I always get hip/joint pain and was told it was arthritis at the age of 36.
Soooo much more... but I will not bore you with the details.
Thanks again,
Pam
It was about a month. His Neuro (which is mine) gave him B12 and Vitamin D. We here at the Lyme community know those will be low. She pulled the same **** with me. He had the tests done at my suggestion through my LLMD and could not believe that our neuro was not up on Lymes. She got the Western blot through Labcorp, Neg, so she told him it could NOT be Lymes at all. !!!!!!!!!!
Jackie, Thank you and I will keep up on the updates. I get all teary eyed when people I have never even met in person can sense who I am personally and can tell me that they admire my calm and courage, it makes me feel better about myself, :)
ewford, I am so grateful for having both the ms and lyme community to help me through all of this. How long after you spoke with the police officer did he go and get tested? That is so great that you have helped so many people.
I have a (father figure) man in my life, he has been a friend of our family since I was a kid, and he lives in a place surrounded by woods and he also has some animals on his farm. He has been complaining that after he showers, his skin becomes very itchy but there is nothing there and no doc's can figure it out. I am going to mention to him about lyme.
He mentioned to my sister that he thinks he has some type of parasite or something because nothing on the outside is showing, its just a feeling.
Thanks guys and I will keep everyone posted.
Pam
ewford, I am so grateful for having both the ms and lyme community to help me through all of this. How long after you spoke with the police officer did he go and get tested? That is so great that you have helped so many people.
I have a (father figure) man in my life, he has been a friend of our family since I was a kid, and he lives in a place surrounded by woods and he also has some animals on his farm. He has been complaining that after he showers, his skin becomes very itchy but there is nothing there and no doc's can figure it out. I am going to mention to him about lyme.
He mentioned to my sister that he thinks he has some type of parasite or something because nothing on the outside is showing, its just a feeling.
Thanks guys and I will keep everyone posted.
Pam
Pam, I met a police officer that had tremors in his hands and could not hold his pistol to qualify for his job. Upon my suggestion and after giving him information, he got tested recently. He is POS for Lyme and coinfections. This disease manifests itself in soo many ways. Glad you have some good help and are finding answers here.
Nicely navigated at the doc's office!
I admire your calm and your courage -- and do keep us posted --
I admire your calm and your courage -- and do keep us posted --
Thanks guys,,, well, I went to my neuro. appt. BUT...... I saw his PA instead. She was awesome, she looked over my folder, my symptoms, she did exams and then set me up to have a MRI of my orbits, since I have had an abnormal VEP that stated "consistent with demyelination".
I did not mention lyme to her. I let her ask the questions, I answered. I then told her that I would prefer to see her again because I liked her. She smiled and thanked me. She didn't rush me out the door, she listened to me, and she even laughed alittle when she said, " for some reason, we all have anxiety" (how some men doc's perceive us women) LOL, I loved it!!
I will take everyone's advice here, I will not shut the door on lyme or ms at this time, it's all part of my process here. I will still seek out an LLMD and discuss that with my endo. in two weeks at my appt.
I will do whatever it takes to get to the bottom of this. I can honestly say, that right now I am not suffering. I have eye issues and seizure disorder, but the other things that go on are not knocking me down. Twitching, buzzing, and cramping have all started to feel normal to me now, so I guess I could say, I'm ok right now.
Thanks again everyone, I will keep updating.
Pam
I did not mention lyme to her. I let her ask the questions, I answered. I then told her that I would prefer to see her again because I liked her. She smiled and thanked me. She didn't rush me out the door, she listened to me, and she even laughed alittle when she said, " for some reason, we all have anxiety" (how some men doc's perceive us women) LOL, I loved it!!
I will take everyone's advice here, I will not shut the door on lyme or ms at this time, it's all part of my process here. I will still seek out an LLMD and discuss that with my endo. in two weeks at my appt.
I will do whatever it takes to get to the bottom of this. I can honestly say, that right now I am not suffering. I have eye issues and seizure disorder, but the other things that go on are not knocking me down. Twitching, buzzing, and cramping have all started to feel normal to me now, so I guess I could say, I'm ok right now.
Thanks again everyone, I will keep updating.
Pam
I think doctors will help you if they do not feel implicated. So you may have to tip toe to get what you need as far as support along the way goes. Some doctors are mavericks (I have a special affection for their confidence) and some doctors (like my doctor) play by the rules. They may know you are tip toeing...but will do it if there is no implication of them doing anything wrong on the records. It's tricky.
I agree with Wonko, who has put things more straightforwardly than I did.
I was less direct in my comments because there are (to me, a stranger who doesn't know you) several unknowns in your situation, and burning a bridge with the neuro prematurely could be problematic if your insurance or a group practice your docs belong to would cause you bigger problems than tippy-toeing around the problem docs.
Many of those I am familiar with who have gone through Lyme did what I did: go find the best Lyme specialist I could travel to, and pay out of pocket. If on the other hand your insurance has hoops you have to jump through and you can't afford to go out of pocket, then carefully picking your course of action to deal with the docs you've got as an obstacle course is more important.
That said, I can't think of anything more important that getting well and staying well, so if I don't take a vacation or get a new pair of shoes for ten years, so be it.
Bottom line, you are maybe juggling a lot of competing factors like the rest of us, but getting well should be right at the top of the list. It's worth it. Take care, keep us posted.
I was less direct in my comments because there are (to me, a stranger who doesn't know you) several unknowns in your situation, and burning a bridge with the neuro prematurely could be problematic if your insurance or a group practice your docs belong to would cause you bigger problems than tippy-toeing around the problem docs.
Many of those I am familiar with who have gone through Lyme did what I did: go find the best Lyme specialist I could travel to, and pay out of pocket. If on the other hand your insurance has hoops you have to jump through and you can't afford to go out of pocket, then carefully picking your course of action to deal with the docs you've got as an obstacle course is more important.
That said, I can't think of anything more important that getting well and staying well, so if I don't take a vacation or get a new pair of shoes for ten years, so be it.
Bottom line, you are maybe juggling a lot of competing factors like the rest of us, but getting well should be right at the top of the list. It's worth it. Take care, keep us posted.
Yes, before my case went full-blown (to the point where I was constantly very sick) my symptoms would disappear/reappear in a relapse-remit pattern.
I recall fairly clearly a specific incident from early 2008:
A few years ago when my condition was still "brewing" I experienced an attack during which I started to get strong tingling paresthesias in my face, hands, and feet. I also started to feel clumsy during this time, my whole left side felt like it was dragging, and I was experiencing fasiculations. Then, one day "out of the blue" I felt a lot better, like 98% better! The only little things I would notice is that my hands would buzz/tingle when I washed them in hot water, and other harmless stuff like that.
However, about six weeks later, I started to feel like I was coming down with something, and just kinda knew that "it" was back. Sure enough, all of my symptoms suddenly returned and worsened.
Since I've been treating for a long time now, it's really tough for me to tell what are just cycles of my symptoms versus what are reactions to medication. But I do certainly experience periods of overall improvement and "attacks" where everything seems to come back/worsen.
I'm not a gambling woman, but I'd put money down on your neuro being dismissive of Lyme. My advice is to see the neuro for a neuro work-up; find a Lyme doc for a Lyme work up, and don't expect the two opinions to agree. Unfortunately, with late-diagnosed Lyme the burden is truly on the patient. I don't think most chronic Lyme cases would be diagnosed were it not for the patients actively seeking it. I know for myself that I would never have gotten a dx or treatment through mainstream medicine, and the neuros were the biggest opponents of the theory that I could have Lyme.
I recall fairly clearly a specific incident from early 2008:
A few years ago when my condition was still "brewing" I experienced an attack during which I started to get strong tingling paresthesias in my face, hands, and feet. I also started to feel clumsy during this time, my whole left side felt like it was dragging, and I was experiencing fasiculations. Then, one day "out of the blue" I felt a lot better, like 98% better! The only little things I would notice is that my hands would buzz/tingle when I washed them in hot water, and other harmless stuff like that.
However, about six weeks later, I started to feel like I was coming down with something, and just kinda knew that "it" was back. Sure enough, all of my symptoms suddenly returned and worsened.
Since I've been treating for a long time now, it's really tough for me to tell what are just cycles of my symptoms versus what are reactions to medication. But I do certainly experience periods of overall improvement and "attacks" where everything seems to come back/worsen.
I'm not a gambling woman, but I'd put money down on your neuro being dismissive of Lyme. My advice is to see the neuro for a neuro work-up; find a Lyme doc for a Lyme work up, and don't expect the two opinions to agree. Unfortunately, with late-diagnosed Lyme the burden is truly on the patient. I don't think most chronic Lyme cases would be diagnosed were it not for the patients actively seeking it. I know for myself that I would never have gotten a dx or treatment through mainstream medicine, and the neuros were the biggest opponents of the theory that I could have Lyme.
Neuros are well known for not believing in Lyme, just like the infectious disease docs, but you never know ... you might get a good one with an open mind. I don't know how badly you need the neuro in your life, so it's a judgment call whether to say you are being evaluated for Lyme.
He might not want to treat you anymore if he thinks you are delusional or uncooperative, and if you need him for other things, well ....
I can't tell you what the best thing is or what I would do. Wish I had some advice. You sound like you are strong and plowing ahead, and that, plus your nice doc, are two VERY important aspects working FOR you!
Stay in touch -- sending good wishes your way.
He might not want to treat you anymore if he thinks you are delusional or uncooperative, and if you need him for other things, well ....
I can't tell you what the best thing is or what I would do. Wish I had some advice. You sound like you are strong and plowing ahead, and that, plus your nice doc, are two VERY important aspects working FOR you!
Stay in touch -- sending good wishes your way.
Jackie and Carrie,
Thank you both so much for replying. Yes, my doc. (psychologist) is definately a keeper. I can't imagine coping with everything without being able to see him and listen to EVERYTHING that i say. He actually wrote a note to my neuro regarding my tremor, saying that it is definately not caused by anxiety. He asked me how "it" was, and I showed him,, he smurked and said, Yeah,,,, that's definately not an anxiety tremor.
Sooooo, I have to see my neuro tomorrow... I honestly don't want to see him because when I was there last, he prescribed klonopin for the tremor. I called my family doc. and told her I was not comfortable with taking anymore medicine, and she said, "You are tired enough" do not take it. Yay!! I am going back to get my seizure meds refilled and my celexa, get copies of my medical reports and pray to find someone new.
Do I mention anything about lyme, or is it a no no!!! We certainly do not want to shake anyone's tree.
If anyone can explain some of their symptoms and duration, and how much time in between attacks, that would be awesome.
Carrie, I get buzzing (vibrating) in my left foot all the time. Sometimes it travels up the shin.
Thanks,
Pam
Thank you both so much for replying. Yes, my doc. (psychologist) is definately a keeper. I can't imagine coping with everything without being able to see him and listen to EVERYTHING that i say. He actually wrote a note to my neuro regarding my tremor, saying that it is definately not caused by anxiety. He asked me how "it" was, and I showed him,, he smurked and said, Yeah,,,, that's definately not an anxiety tremor.
Sooooo, I have to see my neuro tomorrow... I honestly don't want to see him because when I was there last, he prescribed klonopin for the tremor. I called my family doc. and told her I was not comfortable with taking anymore medicine, and she said, "You are tired enough" do not take it. Yay!! I am going back to get my seizure meds refilled and my celexa, get copies of my medical reports and pray to find someone new.
Do I mention anything about lyme, or is it a no no!!! We certainly do not want to shake anyone's tree.
If anyone can explain some of their symptoms and duration, and how much time in between attacks, that would be awesome.
Carrie, I get buzzing (vibrating) in my left foot all the time. Sometimes it travels up the shin.
Thanks,
Pam
Hi Pam,
In my case, when symptoms first started, I had numbness in my face and vibrating symptoms in my legs, numbness in my foot, etc. The numbness in my face and foot only went away when I started ABX. It was pretty consistent. I still get a tingling sensation sometimes under my left eye, but only when I have really high anxiety.
The vibrating in my leg (both now) and the fizzing in my feet comes and goes but never more than a day or two. If I get anxiety about something, my leg starts vibrating or my feet fizz. Never did anything go away for any length of time (prior to ABX).
Gosh, I hope this helps... kind of hard to explain.
In my case, when symptoms first started, I had numbness in my face and vibrating symptoms in my legs, numbness in my foot, etc. The numbness in my face and foot only went away when I started ABX. It was pretty consistent. I still get a tingling sensation sometimes under my left eye, but only when I have really high anxiety.
The vibrating in my leg (both now) and the fizzing in my feet comes and goes but never more than a day or two. If I get anxiety about something, my leg starts vibrating or my feet fizz. Never did anything go away for any length of time (prior to ABX).
Gosh, I hope this helps... kind of hard to explain.
Pam,
There are quite a few posters here who have been in the same situation, wondering if they have MS. I'll let them respond more fully, but it sounds like you have one really good thing going: your doc!
Many if not most nonLLMDs aren't aware of Lyme, aren't familiar with it, and aren't interested in learning about it, so your doc sounds like a keeper! Be aware tho that sometimes referrals are given to infectious disease docs who do not 'believe' in Lyme and simply refuse to consider it. You'll have to see how it goes and adjust course if called for, but this is a very good start. :) Happy tears definitely called for.
There are quite a few posters here who have been in the same situation, wondering if they have MS. I'll let them respond more fully, but it sounds like you have one really good thing going: your doc!
Many if not most nonLLMDs aren't aware of Lyme, aren't familiar with it, and aren't interested in learning about it, so your doc sounds like a keeper! Be aware tho that sometimes referrals are given to infectious disease docs who do not 'believe' in Lyme and simply refuse to consider it. You'll have to see how it goes and adjust course if called for, but this is a very good start. :) Happy tears definitely called for.
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