MS And Lyme Disease (maybe): Does anybody... - My MSAA Community

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MS And Lyme Disease (maybe)

lindaz9 profile image
25 Replies

Does anybody have Lyme and MS? I was bitten by a tick a little over three years ago and it was on me overnight before I found it. This was also before I was diagnosed with MS. After the bite, I started having symptoms and thought it might be Lyme. My MRI's don't show any changes, but I seem to be getting worse, especially my walking and my balance. I also was tested for Lyme, but it kept coming up negative, but I heard that happens. Thanks in advance for responding.

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lindaz9
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25 Replies
falalalala profile image
falalalala

I had a friend who has both. She tried a number of different things over the years for both the most recent being antibiotics through an IV for Lyme.

Back when she was being diagnosed (over 20 years ago) it was a bit harder to get a diagnosis.

Now they have a two tier test that is better for Lyme according to her.

She talked me into getting that one done a few years ago.I got a negative on that.

lindaz9 profile image
lindaz9 in reply to falalalala

Thank you. I am going to try to find a good Dr. Can you tell me what some of her symptoms were?

falalalala profile image
falalalala in reply to lindaz9

She compared it to the typical MS symptoms if I remember correctly.

healthline.com/health/multi...

lindaz9 profile image
lindaz9 in reply to falalalala

Thanks.

greaterexp profile image
greaterexp

We had seven people in our little rural neighborhood with Lyme, so when I began having symptoms, I did ask about Lyme, but tested negative.

lindaz9 profile image
lindaz9 in reply to greaterexp

Thanks. I was tested twice by my general doctor and it came back negative. I am going to get tested by a specialist in that field.

rjoneslaw profile image
rjoneslaw

I read the article that talked about that.

15 years before I was diagnosis with MS the doctors was trying to figure out what was wrong with me and they thought I had Lyme disease.

I was living in Wisconsin and living the dorms, there was a girl who would always come back and leave the bathroom so filthy with mud and dirt so the doctors wondered if she had brought something back from whatever she did.

After 14 days in the hospital it was discovered I had Stills disease which is the adult form of JRA

lindaz9 profile image
lindaz9 in reply to rjoneslaw

Thanks for the info.

jsb0410 profile image
jsb0410

I am actually going to get the results from Lyme testing this week

I see a functional medicine doctor who had recommended a specialist

I had the Western Blot but I only had one band present

The specialist said that this test is only about 50% accurate she ran several other tests

She said that it is possible to still have Lyme even if it never appears on a test

I also haven’t had any changes on my MRI since last year but have had new symptoms

I’m sorry that you haven’t felt well

lindaz9 profile image
lindaz9 in reply to jsb0410

I was tested with that test also. It came back negative. But I hear it is hard to find, so I need a really good Dr. This was three years ago.

IFwczs profile image
IFwczs in reply to jsb0410

Please do let us know your results. Thank you.

My sister-in-law tested negative but they found a doctor who said her symptoms were in line with Lyme disease so he started treating her for it and she got better. But her symptoms were mostly emotional-stopped eating, lack of interest in anything, depression, stopped talking or interacting with anyone, didn't bathe or do any grooming, almost catatonic at times.

lindaz9 profile image
lindaz9 in reply to

Thanks for the info. MS and Lyme have many of the same symptoms. I definitely have MS, but it is hard to tell if a symptom is from that.

JMTS profile image
JMTS

Yes I have been diagnosed with Lyme - I used to g go Queensland quite a bit at one stage but I am sure I wasn't bitten by a tick. I have read an article recently from the USA and they say it can be carried by mosquitoes and I can quite believe that as they carry a lot of other diseases - Ross river fever, Barmah Forrest fever etc. I used to watch Sam Stosuer play tennis and she seemed to tire through her match's and I thought to myself I know how she feels I found out a couple of years ago that she suffers from Lyme - The AMA says there is not such as Lyme in Australia. But then that is another story. At times I wonder if I have MS as I bump into things at times I walk stooped - just similar little things that I have read on this site I have never mention it to my new GP or my Endo - I thought if they were doing their job properly they would pick it up anyway I just put it out of my mind. I take Tumeric which has been my lifesaver - Also Vitamen D3

and at times Selenium. I forgot to mention my life time tablet Thyroxine which I have been on for over 40 years. Take care everyone.

lindaz9 profile image
lindaz9 in reply to JMTS

Thank you so much for all the info. I have Turmeric, so I will try that. Does it take a while of taking it to start working?

JMTS profile image
JMTS in reply to lindaz9

I knew I would miss telling you something - I started to feel well after a week my pains and aches started to go away but still had the odd bad day but the more I take the Tumeric the better I feel I just had to be patient as I have been crook for over 25 years so it is a long time I must be meant to be still here for a reason. but I would rather take something natural before drugs. I absolutely hate taking any tablets always have. The secret for heart burn is when you take your Thyroid Tablet each morning you then have 1 teaspoon of Apple cider Vinegar in a glass of warm water it doesn't work overnight but I don't have it anymore which is a blessing It really works with the Tumeric.

lindaz9 profile image
lindaz9 in reply to JMTS

Thanks. i, too, do not like taking medicine. I'll give it a try.

goatgal profile image
goatgal

Ticks can carry several diseases. You might want to be tested for erlichia and babesia as well as Rocky Mountain spotted fever. At the time of my diagnosis, blood panels were run for all the tick borne diseases.

lindaz9 profile image
lindaz9

Thanks for the info. Do you have MS and some kind of lyme?

JMTS profile image
JMTS

Hello Lindaz9

I make my own - mix a cup of loose Tumeric Power preferably Organic add to bowl and add two tablespoons of crush Piperine (Crushed Black Pepper Corns in a Coffee Grinder) stir into mix and keep in a container that doesn't let the light in - I prefer Glass. You have to have the Pieperine as the tumeric won't absorb into your body without it. Take a half teaspoon once a day for a week to see how you adjust to it any rashes or side effects stop taking it- after the first week then start taking a teaspoon full I usually take in a quarter of glass of milk before I go to bed. leave it a couple of weeks - now they say you can now take 1 teaspoon twice a day. I usually sift it through a fine tea strainer and then you don't have the hards bits from the peppercorns I have received an email from Newsmax about Dr.Al Sears a well known doctor in the USA he is a great believer in Tumeric - You can Google him - let me know if u don't have success. I get all my info from India the Indian address is below- info@turmericforhealth.com Hope you can understand all that let me know if are not sure.

lindaz9 profile image
lindaz9 in reply to JMTS

Thanks, that really helps a lot.

IFwczs profile image
IFwczs

I am seeing a new fantastic Integrative Medicine doctor for candida. He did test me for Lyme disease but it came back inconclusive. He now wants me to take a $250 out-of-pocket test. Not sure why - I definitely have MS. I could have unlikely been bitten by ticks, but mosquitoes are a different story. I have read on Lyme disease but have no Lyme disease symptoms. I am going to ask him in August why he is so insistent on testing me for Lyme.

lindaz9 profile image
lindaz9 in reply to IFwczs

Thanks. Let me know. I am curious.

Sukie427 profile image
Sukie427

When I was first diagnosed with MS, my healthcare team was sure that it was Lyme Disease or something like it. We have dogs and had had a tick infestation two years before my fist symptoms appeared. Also, I horseback ride often in parks and forest environments, and they thought that I might have caught it from either something in those environments or directly from my horse. There is a lab in California whose name I can't recall that does the more specific Lyme Disease test than the usual ELISA (?) test. My test turned out negative, but it was worth a try. Ask your neuro about it. Good luck.

lindaz9 profile image
lindaz9 in reply to Sukie427

Thank you so much. I plan on seeing a doctor who specializes in Lyme.

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