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-   -   symptoms alot like MS, Is it or is it Lymes Disease? (https://www.healthboards.com/boards/lyme-disease/160439-symptoms-alot-like-ms-lymes-disease.html)

kyle1 03-26-2004 09:20 PM

symptoms alot like MS, Is it or is it Lymes Disease?
 
Hi Everyone, I'v posted here before awhile back I thought I had lymes disease. It's been 9 months since all my symptoms started back then I was talking to ticker about my symptoms, remeber me ticker Kyle from Minnesota?
Well anyway it's been a hell of a road for me. Back when this all started it was may and the symptoms consisted of this, dizzieness,weekness,severe tremors at night and all day, it always seem to get worse in the heat,brain fog,super light sensitive expecially at night to head lights on vehichles they seemed to be(streaking) like looking at the sun. Now most recenlty which would be about 10 months after this started I have joint pain mostly in my fingers, also muscle spasms all over, oh and severe back and neck pain all day long. So i took my self to the hospital and i was admitted and they ran some test one being a lumbar puncture and they found 1 protein cell and they thought i had menangitis which eventually came back negative. So the next day they did an mri and seen 4 lesions on my brain that they called unspecific. So i was sent to a neurologist you did a bunch of test which were, emg, ver, bloodwork, 2 hour mri, and they all came back negative. They were looking for MS so the neuro gave me inderall for the tremors and told me to come back in a year, real nice ha. So a month went by and I was getting worse so i went back to the neuro and demanded more test. They gave me referal to the invectious disease for a test for lymes disease and he was the same doctor who seen me in the hospital when he walked in the room he told me before he even sat down or did any test he goes if your looking for a lymes dignoses your crazy because you dont have it, I was just about ready to walk out of the room. Well at about this time i was ready to give up i thought i was at a dead end and this was how i was gonna feel the rest of my life. So here i am 10 months later still feeling this way and I cant get a doctor to take me serious. I was going to schol to be a cop and since this has startred of giving up on my future because i just cant focus anymore.I feel like im dying a slow death. I went to a new neuro 3 days ago and it was the same old story he looked at me gave me the ordinary test and coudnt come up with anything. So as you can see i don't know what to do anymore all i want is to feel better again. I would somebodys opinion does this sound like lymes disease and if it is would I be alot worse off than i am after 9 months of being sick. They tested me for Lymes disease but they say I dont have it, I was tested by my normall doctor and also by the infectiuos disease doctor. As i said earlier i just started getting sore joints within the last 2 months or so, shoudn't you get them right away? And I mean there sore everyday all day for no reason at all. I was wondering maybe Lupus or something like that. But I live here in MN and Lymes disease is all over here plus I work outside and I also hunt so Its's possiable to have gotten it. Well I could go on about my symptoms but my fingers are hurting just typing this. Thanks for reading my post and sorry so long.

dancergirl587 03-27-2004 09:32 AM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Kyle, I'm so sorry you haven't been able to find a LLMD yet. I find it very interesting that you have brain lesions because I also have them and my MD used that as a diagnosis and by my symptons ect. I like you am still searching for a LLMD. I wish I could answer your question about what it does over a long period but I really don't know. I'm sure somebody will come along with an answer though. But in my opinion it sounds like you have a lot of symptoms for Lyme disease. I have also have had LD for a long time, almost 9 years. (I didn't know i had it till last year though) I know how easy it is to get discouraged but there is hope, you can get better! Hopefully Ticker or somebody else can give you the name of a lyme literate MD in your area so you can get back to feeling better! Goodluck!

kyle1 03-27-2004 02:21 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
[QUOTE=dancergirl587]Kyle, I'm so sorry you haven't been able to find a LLMD yet. I find it very interesting that you have brain lesions because I also have them and my MD used that as a diagnosis and by my symptons ect. I like you am still searching for a LLMD. I wish I could answer your question about what it does over a long period but I really don't know. I'm sure somebody will come along with an answer though. But in my opinion it sounds like you have a lot of symptoms for Lyme disease. I have also have had LD for a long time, almost 9 years. (I didn't know i had it till last year though) I know how easy it is to get discouraged but there is hope, you can get better! Hopefully Ticker or somebody else can give you the name of a lyme literate MD in your area so you can get back to feeling better! Goodluck![/QUOTE]


Thanks for the reply dancergirl587 I will keep searching for this diognose until then we all need to stick together.

Komondor 03-30-2004 11:28 AM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Kyle,
Where are you located? I will try to help. I also tested negative twice. One elisa and one WB. I finally tested positive in July for lyme, babesia and bartonella through a lab that specializes in tick borne diseases.

Have you read about the difference in the labs that test for Lyme...? You have a much better chance for a positive being tested by certain labs.

Some people never test positive and even the CDC states - [B]“The diagnosis of Lyme disease is based primarily on clinical findings, and it is often appropriate to treat patients with early disease solely on the basis of objective signs and a known exposure. Serologic testing may, however, provide valuable supportive diagnostic information in patients with endemic exposure and objective clinical findings that suggest later stage disseminated Lyme disease.” [/B]

Testing should be used for backup only because there is no test that is 100% accurate. All of the labs that tested me stated on the bottom of the paperwork that doctors should not rely on testing alone… I cannot remember what it says specifically as I do not have my paper work in front of me right now.

I never would have imagined that I have three tick borne diseases but I do and feel so much better since starting treatment. I have come a long way… I am even going on a much needed cruise next month. There is hope Kyle. Hang in there!

My internist told me there is no way I have lyme. My neuro laughed at me. The internist wanted me to see an infectious doc and some other specialist. I decided to find an LLMD instead. I thank god I did not listen to my doctors or I would still be miserable.

My husband was upset with me for searching the net for answers. He now tells everyone what I went through... He also has lyme and I had to have a fit to make him get tested. I won of course and we now know our entire household is infected as well as my mom.

Listen to your inner voice. We know our bodies and doctors... do not live in our bodies. I am sorry you are going through this and hope you find an LLMD very soon. Tell me were you are located and I will find a doc for you.

kyle1 03-30-2004 06:28 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Dear Komondor, I live In St.Paul Minnesota. I really appriciate you response to my post. I will keeping fighting this until I find some one who will listing to me. I tell ya it has to be soon because this stuff is satrting to take over my life.

Komondor 03-30-2004 07:09 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Hey Kyle,
Hang in there... As soon as I get the information I will post...

Komondor 03-31-2004 11:42 AM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Hey Kyle,

Is it possible for you to travel to Missouri? I know it is a good way but there is a great doctor in that area.

Many many patients travel very far to see this man and speak very highly of him. I have never heard anything negative about this doc.


I will post as soon as I find out more. Is Michigan any closer than Missouri?

kyle1 03-31-2004 08:58 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Dear komondor, I cant thank you enough for what you are doing for me it is so nice to know there are people like you left in this world. I went to the doctor today and my doc is giving me a referal to the rochester mayo clinic. But before i go i am seeing a infectious disease doctor my doc says hes pretty good so im gonna give him a try, Why not iv been to so many all ready whats one more right. Michigan and missouri are both pretty far away for me but if this mayo clinic thing doesn't find anything one of those docs you mentioned will deffinallty will be my next option. So thank you so very much for trying I hope we keep in contact.

Komondor 04-01-2004 02:00 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Hey Kyle,

Go back and reread tickers LYME DISEASE INFORMATION and I would suggest that you read the book she mentioned. I got my copy from my local library when I first started researching Lyme...

My doctors thought I had some rare, rare condition and I cannot remember the name of it. They were more concerned with my rapid heart beat/high pulse rate and ignoring my other complaints.

I read you’re other posts and you sound so much like I did before I was diagnosed. I am not saying you definitely have Lyme as I am not a doctor but it is very suspicious… Why did the infectious disease doc say you are not infected? Was it because your test was negative?

I tested negative twice, finally tested positive through Igenex lab. However, I was lucky as many never test positive... The babesia made me terribly sick on top ot the lyme. I am still fighting Lyme and Bartonella but thank god that babesia is under control. Have you read about co-infections?

I could not walk up or down the steps w/o my legs shaking. I could not lift a pot of water, carry groceries or open jars. I was so weak and afraid I had MS... I was so tired and would actually sleep all day. I cannot count the number of days I missed work.

My eye twitched all the time, then it quit and it moved to my body. Sometimes it felt like fireworks were exploding throughout my whole body. Twitch, Twitch, Twitch... You could actually see it.

I had a hard time swallowing, chest pain, head pressure, air hunger, my butt, feet, hands, legs hurt among other things. I felt like bugs were crawling in my ankles and head, buzzing feelings, flushing, severe nausea, blurred vision, weird sensations throughout my body which are very hard to explain, my arm jerked, numbness in hands, feet, toe, shaking and the list goes on...

I was a very active person before this… If you feel this could be Lyme please see an LLMD. There are many misdiagnosed with MS, Lupus, Fibro, CFS, ALS… I know a lady in NJ that was diagnosed with MS in 99 and just found out in August that she has Bartonella which is another tick borne disease.

Marimac 04-04-2004 05:12 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
[QUOTE=kyle1]Hi Everyone, I'v posted here before awhile back I thought I had lymes disease. It's been 9 months since all my symptoms started back then I was talking to ticker about my symptoms, remeber me ticker Kyle from Minnesota?
Well anyway it's been a hell of a road for me. Back when this all started it was may and the symptoms consisted of this, dizzieness,weekness,severe tremors at night and all day, it always seem to get worse in the heat,brain fog,super light sensitive expecially at night to head lights on vehichles they seemed to be(streaking) like looking at the sun. Now most recenlty which would be about 10 months after this started I have joint pain mostly in my fingers, also muscle spasms all over, oh and severe back and neck pain all day long. So i took my self to the hospital and i was admitted and they ran some test one being a lumbar puncture and they found 1 protein cell and they thought i had menangitis which eventually came back negative. So the next day they did an mri and seen 4 lesions on my brain that they called unspecific. So i was sent to a neurologist you did a bunch of test which were, emg, ver, bloodwork, 2 hour mri, and they all came back negative. They were looking for MS so the neuro gave me inderall for the tremors and told me to come back in a year, real nice ha. So a month went by and I was getting worse so i went back to the neuro and demanded more test. They gave me referal to the invectious disease for a test for lymes disease and he was the same doctor who seen me in the hospital when he walked in the room he told me before he even sat down or did any test he goes if your looking for a lymes dignoses your crazy because you dont have it, I was just about ready to walk out of the room. Well at about this time i was ready to give up i thought i was at a dead end and this was how i was gonna feel the rest of my life. So here i am 10 months later still feeling this way and I cant get a doctor to take me serious. I was going to schol to be a cop and since this has startred of giving up on my future because i just cant focus anymore.I feel like im dying a slow death. I went to a new neuro 3 days ago and it was the same old story he looked at me gave me the ordinary test and coudnt come up with anything. So as you can see i don't know what to do anymore all i want is to feel better again. I would somebodys opinion does this sound like lymes disease and if it is would I be alot worse off than i am after 9 months of being sick. They tested me for Lymes disease but they say I dont have it, I was tested by my normall doctor and also by the infectiuos disease doctor. As i said earlier i just started getting sore joints within the last 2 months or so, shoudn't you get them right away? And I mean there sore everyday all day for no reason at all. I was wondering maybe Lupus or something like that. But I live here in MN and Lymes disease is all over here plus I work outside and I also hunt so Its's possiable to have gotten it. Well I could go on about my symptoms but my fingers are hurting just typing this. Thanks for reading my post and sorry so long.[/QUOTE]My aunt had Lymes but they took so long to diagnose her refusing to believe some one in Texas could have Lymes, that she eventually had a Vetinarian tell her to ask for a specific test. She did and it came back positive for Lymes. By then she had experienced both wrists had to have surgery because arthritis like problems had disintegrated the tendons in both her wrists. They put her on IV antibiotics in the hospital. Now she has to go in about one time per year for those same antibiotics. She is now in her 60's. She has damage in both feet and both wrists.

nuttmeg 04-07-2004 08:15 AM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Hey Kyle.
I too had a difficult time getting a diagnosis and 4 top neuro's in my area all thought I had MS They gave me steriods and almost killed me, I lost my vision had tmj, swollen joints ect... I had 2 negative lyme tests already then another doctor gave me a western blot igg igm and I finally got a possitive test for lyme and started treatment, I have the lesions too and all the symptoms that you have.
I would love to help out if I can. I would certainly not get treated for ms. I would see a lyme literate doctor first and take some antibiotics before I ruined my imunne system with ms drugs

kyle1 04-07-2004 05:28 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
Hi Nuttmeg, Thanks for replying to my post I will take your advice and start pushing for this lymes disease test. Iv been to so many doctors, it's just like an endless road for me with no cure in the future. With your post I sure am feeling alot better I'v always thought I had Lymes but these doctors wont believe me so they wont test me, and when i finaaly got them to test me it came back negative for lymes so all they say is you dont have it and we are not gonna retest you. They claim here that if the western blot,Eliza, are negative that you dont have it.So then youre screwed up the creek with no pattels. But I have another appointment with an infectious disease doctor on the 21st hopefully this guy helps me out, if not i dont know what Im gonna do. Ticker and I both agree that it's got to be Lymes but its always nice to hear from other prople to see how it has affected them as well. thanks alot for making me feel better. :wave:

nuttmeg 04-08-2004 12:11 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
If you read the fda and cdc critera on the internet they tell you blood test are not to be considered during diagnosis. It is a clinical diagnoses this mean it is through symptoms that they diagnose you You can print this out and bring it to the doctor. Hope to hear from you.

polar 05-05-2004 07:04 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
I would think that if you got better with steroids that you do not have lyme, if you get worse with steroids you may have lyme. steroids is a no no for lyme and Im living proof.
eric

SandyGirl 05-13-2004 02:00 PM

Re: symptoms alot like MS, Is it or is it Lymes Disease?
 
hi kyle,
if i were you, i would go to my regular doctor & ask him to test you for lupus as well. One of the standard tests is called an ANA, and that would show up positive for a lot of things. It can't hurt to rule it out.
I am searching for my diagnosis, I know it is autoimmune because at this point I have to many serious symptoms that point to Autoimmune Disease, but for a long time I was hoping it was Lyme. (i still do, but i know its not)
Good Luck


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