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Posted 3/28/2019 5:10 PM (GMT 0)
I was wondering if anyone is familiar with lyme causing autoimmune disorders such as MS.

I posted on here a while back about how I had started to experience pronounced leg weakness a few months back. It started in my thighs but then began to come on in my calves too and man, has it gotten much much worse since December. I can barely stand up from sitting or lying down and when I do, I feel like I cannot stand for more than maybe 10 minutes. I feel like I need a walker or even a wheelchair, it's scary.

I wanted to think it was just another lyme symptom that was flaring that would come and go but I don't think so anymore because I've never had it through the 8 years I've been sick and it isn't only not passing it's getting worse.

I went back to my lyme doc in January and he put me on plaquenil and biaxin and I was hopeful this would eventually make it better but after several weeks and no improvement I really started worrying.

I still haven't improved after about 9 weeks and I went back to my lyme doc earlier this week. He confirmed in a way what I have been afraid of in saying that he thinks something autoimmune may have been triggered by the lyme. He said that things like MS can be caused by lyme and also mentioned that he thinks it could be something called myositis. Does anyone know about that condition?

Any input on this matter would be greatly appreciated, thank you.
Posted 3/28/2019 5:32 PM (GMT 0)
That does not sound like MS to me. I am not an expert by any means, but my understanding is that MS tends to begin with brief episodes, and affects one side of the body at a time at first. An MRI would easily rule this out for you, and there are tests for other autoimmune markers that might help clarify things about autoimmune conditions.

What you describe sounds like myositis, which I have. Some people develop myositis as a result of an infection, which if you have Lyme is likely the case. I had Lyme for years with basically no muscle symptoms, but after a virus last fall, myositis developed, worst in the muscles in the tops of my thighs. My PCP and Lyme specialist have been treating it indirectly, by focusing on it as part of a "post-viral syndrome," i.e. chronic fatigue syndrome or myalgic encephalomyelitis or fibromyalgia. At the time my adrenal system also tanked, and i developed more peripheral neuropathy, so that might be an angle worth exploring, too.

Use a wheelchair when you go to appointments - you deserve to feel safe while you are healing, and should not push yourself! Most healthcare places have them available and will push you around if you need help.

Good luck! Let us know what happens.
Posted 3/28/2019 7:20 PM (GMT 0)

hateslyme said...
I was wondering if anyone is familiar with lyme causing autoimmune disorders such as MS.

I posted on here a while back about how I had started to experience pronounced leg weakness a few months back. It started in my thighs but then began to come on in my calves too and man, has it gotten much much worse since December. I can barely stand up from sitting or lying down and when I do, I feel like I cannot stand for more than maybe 10 minutes. I feel like I need a walker or even a wheelchair, it's scary.

I wanted to think it was just another lyme symptom that was flaring that would come and go but I don't think so anymore because I've never had it through the 8 years I've been sick and it isn't only not passing it's getting worse.

I went back to my lyme doc in January and he put me on plaquenil and biaxin and I was hopeful this would eventually make it better but after several weeks and no improvement I really started worrying.

I still haven't improved after about 9 weeks and I went back to my lyme doc earlier this week. He confirmed in a way what I have been afraid of in saying that he thinks something autoimmune may have been triggered by the lyme. He said that things like MS can be caused by lyme and also mentioned that he thinks it could be something called myositis. Does anyone know about that condition?

Any input on this matter would be greatly appreciated, thank you.

Even IF we accepted that it was an autoimmune disease caused by lyme - THEN treating lyme and coinfections (emphasis on coinfections) should help if not completely irradicate tha symptoms.

Please find yourself a good LLMD - since you have that diagnosis - you want one with expertise

Are you still on Biaxin and Plaquenil?

That is not enough to determine anything...about lyme and co’s.

You may need to have Babesia treated and Bartonella after that.
Posted 3/28/2019 7:21 PM (GMT 0)
Btw - you mentioned your lyme doc put you back on Biaxin and Plaquenil -

What were you on before he put you back on them?
Posted 3/28/2019 7:26 PM (GMT 0)
My lyme doc wants me to see a neuromuscular specialist to do a biopsy on my legs so I am going to set that up, forgot to mention that.

I wasn't on anything before the plaquenil and biaxin as I hadn't been to the doctor for a long while for various reasons. I just can't understand why this keeps getting worse even despite the treatment for a good while now unless there is some other problem going on. That is why I sort of agree with the doc that there may be some sort of other problem here.

Thank you for the response.
Posted 3/28/2019 7:30 PM (GMT 0)
saraeli, thank you as well for the response. I definitely am feeling pretty strongly that there is a very good chance this is myositis so I'll be sure to discuss that with the neuromuscular specialist.
Posted 3/28/2019 7:39 PM (GMT 0)

hateslyme said...
My lyme doc wants me to see a neuromuscular specialist to do a biopsy on my legs so I am going to set that up, forgot to mention that.

I wasn't on anything before the plaquenil and biaxin as I hadn't been to the doctor for a long while for various reasons. I just can't understand why this keeps getting worse even despite the treatment for a good while now unless there is some other problem going on. That is why I sort of agree with the doc that there may be some sort of other problem here.

Thank you for the response.

Sorry - I misread - I thought you said put you back on it.

Don’t rule out lyme because you didn’t respond to that combo.

There’s a lot going on with lyme and coinfections - and you just may need a change in meds.

Let us know how your appt with the Neuro muscular specialist goes.
Posted 3/28/2019 7:44 PM (GMT 0)
For MS - a brain mri should be done and it will show plaque on the brain.
So you could also have that done.

Myositis - if you google it - can be caused by infections - so even if you get that diagnosis - it still could be lyme and that’s one of your symptoms.
Posted 4/2/2019 8:50 PM (GMT 0)
Should this be myositis caused by lyme, anyone have any thoughts on taking corticosteroids/immunosuppressants to treat it?

I know that I've heard it's not wise to take them for lyme/coinfections but honestly when the muscle weakness in my legs is as bad as it is, I am ready to give in with it.
Posted 4/2/2019 11:42 PM (GMT 0)
Were I you, I'd give a low dose corticosteroid a try. Perhaps there's even a topical version. Myositis is terribly limiting, and it's unclear how long it might take to go away.
Posted 4/3/2019 12:02 AM (GMT 0)
Any steroids used in dosages to treat autoimmune diseases are a no-no with Lyme disease.
They can lower your immune system allowing the infection to flourish.

Low doses are sometimes prescribed for people who are low in cortisol.
Posted 4/3/2019 12:15 AM (GMT 0)
Mhm I second no steroids, along with lowering your immune system they could alter the production of your own hormones and you could become dependent on them
Posted 4/3/2019 1:02 AM (GMT 0)
Ordinarily I would agree, just say no to steroids, but I get it, re: myositis. It's freaky and means you can't move, and it can affect any muscles, including the heart. For me, I could not take a steroid for it because steroids would permanently destroy the vision in one of my eyes due to a retinal condition. I had to choose between being paralyzed indefinitely, or having unilateral vision loss. So I spent months in bed, being carried to the toilet by my partner, which a few doses of a steroid could have fixed. Understanding the risks involved for taking a steroid when you have a known infection like Lyme, you could load up on your antibacterial treatments and hope for the best. I'm sorry, I know it's a crappy choice to have to make.
Posted 4/3/2019 1:30 AM (GMT 0)
darn, that's awful. I haven't even heard of myositis. I've been couch bound but not incapacitated. That is a hard decision to make. This disease can do horrid things.
Posted 4/3/2019 2:12 AM (GMT 0)
I would discuss with a very experienced LLMD before doing more than a low dose of steroids.

If the immune system gets suppressed from them and the infections flourish - you could be even worse off especially if the myositis is caused by these infections.
Posted 4/3/2019 4:47 AM (GMT 0)
I have autoimmune conditions and had a lot of muscle pain, weakness and rigidity for years. I was gene tested for many rare muscle disorders and had none of the associated genes.

What I noticed is some Drs might have a biased toward certain muscle pain disorders that have no certain diagnostic tests so its best to get several opinions. If the opinions are different, well, there you go, its just an opinion. Maybe MS, Myasthenia gravis, fibro, stiff person syndrome,...... I got tired of "possible" labels.

What did work (and makes sense) was major heavy duty deep muscle massage and release. Needed repeating so much that I learned the various form myself. A stiff muscle (and nerves to some extent) no matter what the cause needs circulation to improve. This obviously can be done while eradicating the critters too with herbs, abx...or whatever.

Had I done nothing for my muscles, I probably would have ended up in a wheel chair, at least for a while. But I fought it. There was a lot of couch and floor time in between the consonant muscle work and exercising. Started with the spine and went outward.

At one point exercise was almost impossible, as my muscle would not recover sometimes for two weeks, and sometimes would get injured. I just did muscle release then and floor stretching exercises. Now I can go to the gym with normal recovery, and gain strength.

That said, getting a muscle tissue biopsy does sounds beneficial. I know it takes a while as they pass the sample on lab to lab.

Post Edited (astroman) : 4/3/2019 8:29:11 AM (GMT-6)

Posted 4/3/2019 7:02 PM (GMT 0)
ARTHRITIS & RHEUMATISM
Vol. 54, No. 8, August 2006, pp 2697–2700
DOI 10.1002/art.22007
© 2006, American College of Rheumatology
Lyme Myositis

https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.22007

Post Edited (astroman) : 4/30/2019 8:38:38 AM (GMT-6)

Posted 4/14/2019 8:50 PM (GMT 0)
Called the doctor to see if he would prescribe me prednisone since I can't see the neuromuscular doctor until June.......told the receptionist basically, "look, I need this."

He actually prescribed it to me, one prednisone tablet 10 mg once daily, so that made me happy. I'm glad that it's a low dose but still am scared about side effects and what it might do with my lyme and coinfections. I just feel like I don't have a choice when I can hardly walk!

Just wanted to update you all, thank you for your support and responses, this is really a great forum.
Posted 4/14/2019 8:56 PM (GMT 0)
I will be curious to hear how it goes, if you care to post more! Wishing you all the best.
Posted 4/14/2019 8:59 PM (GMT 0)
Hope it helps!

Have you thought about trying half that dose? The lowest effective dose would be best - considering you have lyme.

Maybe 5 mg would work?
Posted 4/30/2019 2:15 AM (GMT 0)
Wow, no improvement at all, so I am very disappointed. Have been taking the pred for just over two weeks so I thought I would see some improvement but no luck. It even seems to be attacking my muscles in my stomach back and arms too.

What to do....
Posted 4/30/2019 6:15 AM (GMT 0)
you do NOT need a wheelchair, you need to:
- exercise to keep your muscles moving
- take lyme treatment, so the condition progresses less quickly
- start anti inflammatory diet now, stop eating gluten, sugar and dairy, you will see major improvements in 6 months time
- last but not least, change lyme doctors if they run out if ideas.

worst thing possible is sit in wheelchair, eat cookies and give up hope. it will get very very dark before you hit bottom, believe me. not a good choice.
Posted 4/30/2019 6:41 AM (GMT 0)
Mpost - Some people with lyme DO need walkers or even wheelchairs. I don’t know if that’s the case with hateslyme. They can be temporary - or even just used part time... until they get effective treatment.

I do know a person who is in a wheelchair from lyme. She has also been diagnosed with ALS and has been deteriorating quite quickly.

Another person I know (with lyme) uses a walker to get around and is also declining... will prob be in a wheelchair soon. I’m hoping she has chosen to treat lyme.
Posted 4/30/2019 6:50 AM (GMT 0)

Girlie said...
Mpost - Some people with lyme DO need walkers or even wheelchairs.

yes especially if you have not gotten treatment that's clear, but if you debate if u need a wheelchair or not, so you are not already in the state where u certainly cannot move, i would push myself a little bit further. the thing is , once you sit on wheelchair, the muscles will start deteriorating even more quickly than when u were trying to push yourself a little bit and use your legs. recovery is going to be more difficult, and there is no way around it, even if u get treatment, you will still have to re-learn to walk and stand.

so my point is, better delay that as much as possible, if u can , push yourself to walk. if u cannot, of course, get the help of a cane, wheelchair etc. but don't get that help too early... it will work against you.
Posted 4/30/2019 7:59 AM (GMT 0)
being wheelchair bound myself sorry to hear you gave into the steroids . mytosis shmosis.... attack the insult to your demylienation and stop the symptoms....instead of adding fuel to fire i suggest you try some alternative approaches?! btw using latin to describe what is occurring without explaining a cause does not a diagnosis make..... destruction of nerves with too aggressive tx will cause more not enoungh is more damage too. excessive exercise caueed excess lactic acid furthering weakness and wasting . keep it moving but if you want the tree to fall use a small small ax on the roots and watch it fall . i say this from the other side take heart not to hatelyme

Post Edited (bluelyme) : 4/30/2019 2:10:34 AM (GMT-6)

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