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» LymeNet Flash » Questions and Discussion » Medical Questions » MS or lyme

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Author Topic: MS or lyme
Jenene
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Hello everyone!!

I started treatment 2 weeks ago for Lyme. The past few days my 4 smaller toes and my pinky and ring finger keep going numb on my right side.

The reason I'm asking is because I never had a 100% sure lyme test come back positive and there was the possibility of this being MS.

Would these symptoms show up after treatment if they are new to me?

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Jk

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HW88
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What antibiotics are you on? Some antibiotics can cause neuropathy I believe.

When I first started treatment I had NEW symptoms show up and yes symptoms show up throughout treatment.

I think it was tincup that told me to think of them as fireworks and celebrate because that means bacteria is dying... LOL

I didn't ever have a 100% positive lyme test either, but I'm treating for Lyme and have seen small improvements. I'm not too far into treatment either.

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Lymetoo
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Could be many reasons for that to happen.

Keep in mind that there is NO definitive test for MS. It is a diagnosis of exclusion.

Lyme is usually the cause of MS symptoms .. also look to viruses.


But the finger issue could be other things as well.

--------------------
--Lymetutu--
Opinions, not medical advice!

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TF
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You herxed 2 days after starting lyme treatment, so you have lyme disease.

I doubt you also have MS.

By reading your old posts, it seems to me that you are just taking Bactrim. Is that correct?

When you ask questions about symptoms, it is always good to tell us what meds you are on because some symptoms can be side effects of meds.

Numbness is not a side effect of Bactrim, however. But, numbness IS a symptom of lyme. See p. 10 of Burrascano:

Tingling, numbness, burning
or stabbing sensations,
shooting pains, skin
hypersensitivity

See this quote:

"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (p. 4)

So, as lyme attacks the nerves, you get the various symptoms named such as numbness, burning, pins and needles, etc.

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jsnyde2
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They tried to pin Lupus on me this time around. I'm just not taking that diagnosis, especially since I had the Lyme rash and classic Lyme symptoms. Last time - 11 years ago- I got Hashimoto's Thyroiditis, which was reversed with Lyme treatment.

Maybe I have Lupus, which is an autoimmune disease like Hashimoto's but I feel it can be reversed, since it was caused by Lyme. Lyme causes inflammation, inflammation causes autoimmunes.

Is MS an autoimmune?

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Jordana
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To get a diagnosis of MS, you go to the neurologist and they do some functional tests, and if anything seems abnormal then you can get an emg, where they push a lot of needles into your body and see the response of your nervous system. Then they'll do an MRI of your brain.

In my case, you wouldn't believe the things I've had happen since my Lyme became symptomatic. The most insane stuff has happened to me, 1000 times worse than this "numbness and tingling" stuff. And every test I've taken has been completely normal. Lyme causes spots on your brain -- I don't have any, but it can, and they can look like MS.

I know it drives you crazy to have no support or explanation for the stuff that happens except "lyme" and I wouldn't believe it myself if it wasn't happening to me.

Go through the testing if it will ease your mind but it really probably isn't MS.

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Jenene
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Ok thanks, yes I am on Bactrim only. The only other thing I am trying is essential oils. The Dr did say mine was neurological Lyme.

I wasn't sure if you could get new symptoms during treatment.

I am really hoping this treatment will work.

I guess this is s sign that it is working

Fireworks!!!!!

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Jk

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SickSam
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You can definitely get new symptoms during treatment. If you make the little bugs mad enough they can do all kinds of new things!

Also, when I started treatment, Bactrim was my only antibiotic too. It helped a lot, but many symptoms it never helped. Some symptoms just got worse on it, probably because I have a coinfection that Bactrim wasn't killing. Could be the same for you too.

It's way too early to tell if that's the case for you too, but If that happens, don't give up, just keep trying different antibiotics!

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Jenene
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Thank you. It's a lot to wrap my brain around the fact I may never get better!! I am trying to be hopeful though.

I was never one to take meds. I always tried the natural route.

I'm struggling with the fact that I may need antibiotics on and off for the rest of my life.

I'm trying to be positive but as you all may know this is a very hard thing to go through!!

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Jk

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Jenene
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I just saw one of your posts and I do have spots on my brain.

MS is autoimmune

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Jk

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Jordana
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Lots of people have spots on their brains. It's actually not diagnostic -- you have to have new symptoms and new spots to get diagnosed.

Most people in the Lyme world aren't convinced that MS really exists. There are no autoimmune markers for MS; just symptoms and an MRI. Mostly our crowd is pretty convinced that MS is Lyme.

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117839;p=0

Topic: Could (misdiagnosed) MS be Lyme?

Many links here about the Lyme-MS connection - and how "autoimmune" often really is not what it seems but the body trying to fight a tenacious stealth infection.

Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities.

Key nutrient factors discussed, too. But good nutrients, alone, will not be enough to address the issue.
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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set
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Jordana
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Jenene -- you will get better. Of course. It's a matter of making one adjustment to your lifestyle after another and being extremely patient.

The craziest thing about this disease is that it changes over time. When I first suspected I had Lyme, I had twitches and facial paralysis and all kinds of GI misery, and so many visual disturbances I basically could not see.

Now my symptoms are totally different. I rarely twitch, now I feel like I'm walking/sitting on marshmallows all the time and turning my head a certain way makes me feel like I'm falling down an elevator shaft. I barely have anything left from my Lyme a year ago.

Am I better? Am I worse? Who knows?

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Lymetoo
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Like I said, there is no test for MS ..

You will DEFINITELY get MORE symptoms while treating Lyme. They will come out of the woodwork.

RELIABLE information on Lyme and coinfections:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

--------------------
--Lymetutu--
Opinions, not medical advice!

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bluelyme
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Here is video from dude from ks...at top they said his dx is ms ..clearly you can spirochetes

https://www.youtube.com/watch?v=fJBBHZSCdb8&feature=youtu.be

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Blue

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Catgirl
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MS is lyme and company. I wouldn't waste my time on the testing. TF is right, you wouldn't have herxed if you didn't have lyme.

Conventional medicine makes up new names for things they cannot explain (lyme gives them so much to work with). They just aren't familiar with lyme thanks to the idsa's bad identifying guidelines, test, etc.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Jenene
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Thanks for the links and support!! It is so nice to have this group because this is so complicated and no one understands!!!

I have so many questions!!!

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Jk

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Lymetoo
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Amen, Catgirl! You got it~~!

Jenene .. keep the questions coming! We're here for ya!

--------------------
--Lymetutu--
Opinions, not medical advice!

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me
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Have you watched "Under Our Skin?" It will help explain some very important things to know regarding Lyme:

http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Many of are misdiagnosed with MS, rheumatoid arthritis, Parkinson's, and the list goes on.

Please keep asking questions. You have a wonderful support group.

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Jenene
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Thanks to everyone!

--------------------
Jk

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thatdudefromkansas
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I was diagnosed with MS, and am seeing and LLMD for treatment.

See my posts in the microscopy forum.

I do microscopy, actively searching for borrelia in blood and cultures.

I am convinced they are one and the same, but treatment is another story altogether.
Is it a condition caused by Borrelia, but cannot be reversed even with eradication of the bacteria?
Is it, as Dr. Alan MacDonald pointed out, a symbiotic infection of both the borrelia bacteria and an unidentified parasitic roundworm in the brain?

this is what I am actively pursuing now.

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bluelyme
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Hey dude ...how do you plan on treating the helminith part ?

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Blue

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foxy loxy
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thatdudefromkansas,

My mom has M.S. and I have lyme and all co infections. She has tested positive for lyme too, and a few specifically new symptoms went away with treatment.

Her classic M.S. symptoms did not improve one bit.

I agree with you that there has to be something a bit different going on.

Keep up the good studying work! We need heroes like you!!! [Smile]

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