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Posted 9/25/2017 12:48 PM (GMT 0)
Hey guys,

ok so since the beginning of my symptoms, ive always had dizziness and brain fog. but the one that scares the living daylights out of me is my shakes!! i dont know how to explain it but everything just shakes! my fingers move on their own, whenever i try doing something i tremor and just shake! my face feels like its shaking and tremors 24/7! im convinced i have ALS or Parkinsons.
my question is, is this nerve damage, inflammation, ALS??? i mean ive been in treatment 3 months now and it just wont let up, actually nothing is letting up. im just so hopeless anymore. my kids need me and im just not there. im so depressed
Posted 9/25/2017 2:01 PM (GMT 0)
I am so sorry physedgirl09! I know you'll get some answers from others on this forum that know a lot more then I do but I just wanted to let you know that I am so sorry you are going through this! I have 3 kids too, my youngest was 3 when my symptoms started and I was beyond scared that they were going to lose there mom! I still have those fears on occasion! I wish there was a easy fix and that all doctors would recognize the disease then at least our journey to health wouldn't have so many questions and fears!! I hope things start to get better!
Posted 9/25/2017 2:41 PM (GMT 0)
sounds like you are dealing with IH, I just made a post about it here

https://www.healingwell.com/community/default.aspx?f=30&m=3917627

can you tell me more about your nerve pain? where exactly is it located specifically?
Posted 9/25/2017 2:44 PM (GMT 0)

physedgirl09 said...
Hey guys,

ok so since the beginning of my symptoms, ive always had dizziness and brain fog. but the one that scares the living daylights out of me is my shakes!! i dont know how to explain it but everything just shakes! my fingers move on their own, whenever i try doing something i tremor and just shake! my face feels like its shaking and tremors 24/7! im convinced i have ALS or Parkinsons.
my question is, is this nerve damage, inflammation, ALS??? i mean ive been in treatment 3 months now and it just wont let up, actually nothing is letting up. im just so hopeless anymore. my kids need me and im just not there. im so depressed

I've had ALS-like symptoms for almost 2 years. And I can still walk, run, jump, stand on one leg and moon walk. Real ALS follows a certain pattern. Muscle weakness that proceeds muscle loss (in that order). The symptoms don't come and go, when it happens it here to stay. And the person very quickly goes down hill and deteriorates.

I also had Parkinson like shaking at lot in the beginning of lyme. Now it very rarely happens (outside of too much coffee being the reason).

Lyme does disrupt a lot of the same systems as these other conditions, so there's similar, like symptoms from time to time.

The good news is, unlike many other people, you at least know the cause of yours and can do something about.
Posted 9/25/2017 2:50 PM (GMT 0)
Also, I'm guilty of this too. In the last 2 years I've gone through the same psychological roller coaster of "is it really something else". I've convinced myself I had ALS, Parkinson, cancer, and AIDs (as if the multiple negative test results were some how still wrong).

It's a very illogical and burdensome thing that I think many lymies do.

First no one has 5 of the worse diseases that exists at once, PLUS lyme. Then next is we have the positive lyme and co results to prove it's lyme and co, but for some reason there's still that little voice in the back of the consciousness that messes with us.

I totally get it and I would argue the psychological part of lyme is as bad if not worse than the physical.
Posted 9/25/2017 2:56 PM (GMT 0)
It is very hard to believe that a tiny tick can cause so much in a body. Most of us have had a cold for a week, or the flu for a week and a half. But, to be this sick we think it is something really bad.

It is just human nature to want a clear cut definitive answer and with lyme there are so many unknowns. Why is it so different with everyone? They have no idea.
Posted 9/25/2017 3:11 PM (GMT 0)
Lapis,

very interesting i read your other post. i have all of those symptoms you describe. is the lumbar puncture the only test for it? or is there something else they can do to check it?

Dacarte-you definately made me feel a little more at ease. i keep telling my husband im gonna freakin die or i am gonna be debilitated my entire life!!
do you still have the symptoms after 2 years??? did it get ANY better?

Tonya and peteza-Thanx for replying. i dont know whats goin on with me lately..2 weeks ago i thought i was starting to feel more like myself, then i started interfase plus and im a hot mess with anxiety, brain fog, bad shakes. is there an end in sight!!!
Posted 9/25/2017 3:58 PM (GMT 0)

physedgirl09 said...
Lapis,

very interesting i read your other post. i have all of those symptoms you describe. is the lumbar puncture the only test for it? or is there something else they can do to check it?


yes, there is an eye test that looks for swelling and damage to the optic nerve—a condition called papilledema. its non invasive.

I have found profound relief of nervie issues using topical DMSO, usually mixed with liquid B12. let me know if you want more info.
Posted 9/25/2017 4:27 PM (GMT 0)

physedgirl09 said...
Lapis,

very interesting i read your other post. i have all of those symptoms you describe. is the lumbar puncture the only test for it? or is there something else they can do to check it?

Dacarte-you definately made me feel a little more at ease. i keep telling my husband im gonna freakin die or i am gonna be debilitated my entire life!!
do you still have the symptoms after 2 years??? did it get ANY better?

Tonya and peteza-Thanx for replying. i dont know whats goin on with me lately..2 weeks ago i thought i was starting to feel more like myself, then i started interfase plus and im a hot mess with anxiety, brain fog, bad shakes. is there an end in sight!!!

I use to have 30 symptoms. Now I have like 3 or 4. Based on the symptoms my gut feeling is it's more autoimmunity that comes with lyme more than the Lyme itself.

So I'm definitely not out of woods. I have to figure out these last few symptoms.
Posted 9/25/2017 4:47 PM (GMT 0)
lapis, yes id really like more info in detail on the stuff you use. Thank you so much!!


Dacarte, what are your remaining symptoms? and did you treat lyme and co with antibiotocs? How long did it take you to see your first few symptoms start to disappear???
Posted 9/25/2017 5:21 PM (GMT 0)

physedgirl09 said...
lapis, yes id really like more info in detail on the stuff you use. Thank you so much!!

i use 'bio alternatives' brand of sub lingual B12, it is pure B12 no additives. I mix pure Pharma grade DMSO (from 'dmso store' on amazon) and that B12 together, then apply it topically wherever I have pain. legs, shoulders, temples etc.

the mix is about 80% dmso, 20% liquid B12.

the more you use, the more affective it is.

you may get a burning sensation on the skin when you apply it, but it only lasts for about 30 minutes. sometimes the skin dries out afterwards, if so use your favorite aloe vit E skin cream on that area.

the DMSO makes ABX much more affective, disables borrelia's signalling system, calms down inflammation, promotes nerves growth, and carries the B12 into the tissues where it is needed most.

I am also experimenting with adding B1 to the mix, but too early to say on that. let me know if you try it or have any other questions.
Posted 9/25/2017 5:34 PM (GMT 0)

dacarte3 said...


And I can still walk, run, jump, stand on one leg and moon walk.


i wanna see you moon walk...lol.
Posted 9/25/2017 5:38 PM (GMT 0)
haha girlie!


thanx for the info lapis!
Posted 9/25/2017 5:40 PM (GMT 0)

Lapis_29 said...
sounds like you are dealing with IH, I just made a post about it here

https://www.healingwell.com/community/default.aspx?f=30&m=3917627

can you tell me more about your nerve pain? where exactly is it located specifically?

Lapis - IH isn't always the cause of tremors.
Posted 9/25/2017 5:42 PM (GMT 0)

Girlie said...

Lapis_29 said...
sounds like you are dealing with IH, I just made a post about it here

https://www.healingwell.com/community/default.aspx?f=30&m=3917627

can you tell me more about your nerve pain? where exactly is it located specifically?

Lapis - IH isn't always the cause of tremors.

right, I was thinking of the 'dizziness and brain fog' they complained of which is classic IH symptoms
Posted 9/25/2017 5:45 PM (GMT 0)

Lapis_29 said...

Girlie said...

Lapis_29 said...
sounds like you are dealing with IH, I just made a post about it here

https://www.healingwell.com/community/default.aspx?f=30&m=3917627

can you tell me more about your nerve pain? where exactly is it located specifically?

Lapis - IH isn't always the cause of tremors.

right, I was thinking of the 'dizziness and brain fog' they complained of which is classic IH symptoms

Again, those are common symptoms of Lyme - even without IH.

I would ask if she's feeling some pressure in her head, and/or headaches, and/or blurred vision.
Posted 9/25/2017 6:22 PM (GMT 0)
no pressure in the head, no headaches, slight blurry vision in the left eye.

can an mri with and without contrast show IH?
Posted 9/25/2017 6:29 PM (GMT 0)
lumbar puncture is one way...I wouldn't do that unless you're experiencing symptoms of IH.

I would get your eyes checked though. (your blurry vision needs to be looked at)

Ask for the visual fields test, it's an extra test.
Posted 9/25/2017 6:44 PM (GMT 0)
Thank you girlie
Posted 9/25/2017 7:15 PM (GMT 0)

physedgirl09 said...


Dacarte, what are your remaining symptoms? and did you treat lyme and co with antibiotocs? How long did it take you to see your first few symptoms start to disappear???

numbness and tingling in the extremities (while sleeping only for some reason), muscle twitching (mild), and tissue breakdown around the joints or proximity of joints.

With the other 27+ symptoms gone and this remaining (after almost 2 years) it sounds very autoimmune-like and not necessarily the lyme itself.

It feels much more like "repairing damage" of the lyme war (autoimmune being a part of that damage).

It's why I believe so many people get 80-95% better and then get stuck. I believe because it's no longer about fighting a war with lyme, for that may be as over as it can be and the focus must shift to rebuild and repairing.
Posted 9/25/2017 8:06 PM (GMT 0)
>>It's why I believe so many people get 80-95% better and then get stuck. I believe because it's no longer about fighting a war with lyme, for that may be as over as it can be and the focus must shift to rebuild and repairing.

yup i hear this all the time. its so hard to tell whether you're still fighting infection or the residual left over from the scorched earth policy we seem to have to take to eradicate ourselves of these invaders.
Posted 9/25/2017 8:27 PM (GMT 0)

Rikky1 said...
>>It's why I believe so many people get 80-95% better and then get stuck. I believe because it's no longer about fighting a war with lyme, for that may be as over as it can be and the focus must shift to rebuild and repairing.

yup i hear this all the time. its so hard to tell whether you're still fighting infection or the residual left over from the scorched earth policy we seem to have to take to eradicate ourselves of these invaders.

Rikky - good question for your LLMD - at what point is it damage and not active infection?
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