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Stoll getting worse. More MS like symptoms every day.

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Posted 9/10/2014 4:11 PM (GMT 0)

Hello,

 

So as time goes on I develop more and more MS symptoms. I can’t really post on the MS board since I have posted so many times here. Anyway, my joint pain is almost gone, my pain in general is much less and my cognitive issues seem to be less. On the flip side my shakes are constant and have gotten worse, the whole left side of my body has been numb for over a week and my left arm is much weaker than my right. The last neuro I saw (who still hasn’t returned my calls after 3 weeks) said my brain looks like MS with a few exceptions and if I had only symptoms A-D instead of A-Z like I have, he would say it’s MS. He wanted another opinion from a peer and was supposed to call me back. So now I wonder if my treatment is taking care of the Lyme and Mycoplasma and the aftermath of the untreated infections is MS and/or Parkinson’s. I know no one can really answer this. I’m just venting I guess. I just keep losing more and more functionality every day. I’m scared to think what the end result will be.

Posted 9/10/2014 5:27 PM (GMT 0)
Hi Akkami,

Have you tried contacting learnlyme? He might be of some assistance. If I were you I would get in touch with him as he also goes to neurologists and I believe it took him quite some time before he started seeing improvement.

http://learnlyme.wordpress.com/the-disease/
Posted 9/10/2014 6:22 PM (GMT 0)
That would be helpful. Thanks. I looked at the link. Looks like it hasn't been updated in a while. I hope LearnLyme is ok.
Posted 9/10/2014 6:49 PM (GMT 0)
Oh trust me, he's fine. He is probably just busy with the fam and work!
Posted 9/10/2014 10:03 PM (GMT 0)
So do you have silver fillings? I recently started getting head and neck tremors, tremors in my tongue and teeth chattering. Just weird stuff. Alot of stuff around my mouth. Burning in my mouth. I had some holistic work done and they said I have lots of chemicals in my system. I haven't done further testing for heavy metals but a lot of symptoms correspond to mercury toxicity. The neuro ruled out most everything else. I've read that heavy metal toxicity and ms have similar symptoms.
Posted 9/10/2014 10:29 PM (GMT 0)
Sorry you're having a difficult time Akkami. Are you still seeing Dr. D?
I'm glad the pain has diminished, but doesn't sound like a great trade off.

Prayers for your healing.
Posted 9/10/2014 11:26 PM (GMT 0)
Louise- I don't think I have silver fillings. I did heavy metal testing and it came back fine.

Delmar- I haven't seen Dr. D in 3 weeks. His new staff keeps hurting me during injections and blowing out my veins. Figured I needed a break. He knows about the shakes and told me to up m electrolites. I did this with no improvment. He said he didn't ahve anything else he could do for me.
Posted 9/10/2014 11:53 PM (GMT 0)
Akkami,
If you would like to find another LLMD in your area, just send me an email. You could interview them over the phone about having someone on staff that could be very gentle with you.
Posted 9/11/2014 12:34 AM (GMT 0)
Thanks Traveler. I've seen all 3 of the supposed LLMDs in my area. If you think there are more on your list then I thank you in advance. I am in a non-epidemic area for sure. SO I can drive 4 hours north for another supposed LLMD I guess.. There is also the Spenugle clinic about 5 hours away but that's way out of my price range. I'm on a waiting list to see one of the associates of Dr. H. in NY. The Dr. H. that is deep into the Lyme scene. NY is by no means close to me, but at this point I feel like if he can't help me no one can. That being said, I am about 1 month into my Zhang herbal protocol and will continue to take the herbs until I get better, I see Dr. H., of I kick the bucket. What else can I do really?
Posted 9/11/2014 11:02 AM (GMT 0)
One more suggestion—

When I started exhibiting the MS type symptoms, my LLMD put me on low dose Naltrexone, which is often prescribed for MS patients. She slowly worked me from 1mg up to 4mg daily. I experience a significant explosion of sx when I forget to take even one dose.

-p
Posted 9/11/2014 4:13 PM (GMT 0)
Thanks for the tip Pirouette. I'll ask my doctor about it.
Posted 9/11/2014 8:05 PM (GMT 0)
LDN also helps many Lyme patients with pain!!
Posted 9/12/2014 8:31 AM (GMT 0)
Louise, my husband had four teeth chattering episodes yesterday...he is in the hospital. I wonder if it is connected to Lyme. They did not last long, but it is disconcerting. The neurologist is stymied as to why his is having these episodes. Any thoughts on this? I am sorry Akkami for sidetracking your posts. Louise's experience with teeth chattering caught my eye. I am sorry you have these MS symptoms.
Posted 9/12/2014 12:08 PM (GMT 0)
Huh, I have alot of weird symptoms and I was cleared by two neuros. I do have a brain tumor, which they said is nothing and not an issue. I have serious brain inflammation which was on a MRI and was not given an explanation. My house was full of toxic mold and I had a positive western blot for lyme. A naturopath thinks I might have a heavy metals issue so I might send in my hair.

I have seen no less than 30 doctors over 10 months and nobody has a clue as to why I'm so sick.

The majority of symptoms are in my mouth or head/neck.. I've had involuntary jaw movements, the teeth chattering, burning sensations, severe nausea. And more.... I have a few amalgam fillings, so I'm exploring mercury poisoning.

I think I'm a toxic dump. My original symptom was trouble swallowing so o did have als, ms 's, lupus all autoimmune ruled out
Posted 9/12/2014 4:54 PM (GMT 0)
The teeth chattering is something that I've dealt with - along with other muscle tremors. This can be from Lyme or from too much ammonia in the brain from what I understand - also look into the more mild seizures: www.epilepsy.com/learn/types-seizures and of course, watch for signs of more.
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