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» LymeNet Flash » Questions and Discussion » Medical Questions » I am really scared and I feel so alone.

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Author Topic: I am really scared and I feel so alone.
luvema
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I was on IV meds for 9 months with little improvement. Now, I am off antibiotics and my doctor is doing this anti fungal protocol and she couldn't put me on any antibiotics.

Well, my symptoms are getting scarier and scarier by day. I have constant head movements and head pressure. And recently I developed this new symptoms where when I am standing my body starts moving on it's own from side to side… twisting all the way, and even when I am sitting it starts rocking back and forth.

I am really scared, I don't have the control over my body and it's scaring me to death.

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Ema

Posts: 394 | From Southern California | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
lpkayak
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I dont have that but im pretty sure the girl on under our skin did and she git better

Please hang in there

I hope others come along soon that have experience with what you are going thru

--------------------
Lyme? Its complicated. Educate yourself.

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Dogsandcats
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What does your LLMD say about your symtoms?

How long have you been off the antibiotics?

Have you tried to detox: dry brushing, Epsom salt baths?

I am not a medical professional- take care.

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God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Judie
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Maybe try a different antibiotic? It doesn't sound fungal to me, but I'm not a doctor.

Bicillin has helped a lot after having several other antibiotics fail me.

It does sound scary. Can you get another opinion from a different LLMD? Sometimes you just reach the end of suggestions from one doctor and need a fresh perspective.

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glm1111
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luvema,

you need to find a practioner that treats parasites asap. Antifungals won't work for that. I have had the rocking movement and it was from the parasites moving around inside. I have suggested this to you before.

If you can't find a doc that will treat you for parasites, you might have to treat yourself as many here have had to do. Check out the PARASITE WARRIORS SUPPORT THREAD for more info.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Carol in PA
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Is the antifungal Diflucan?

Diflucan is part of the Schardt Protocol, and has been found effective in treating Lyme.

Posts: 6942 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Catgirl
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quote:
Originally posted by glm1111:
luvema,

you need to find a practioner that treats parasites asap. Antifungals won't work for that. I have had the rocking movement and it was from the parasites moving around inside. I have suggested this to you before.

If you can't find a doc that will treat you for parasites, you might have to treat yourself as many here have had to do. Check out the PARASITE WARRIORS SUPPORT THREAD for more info.

Gael

DITTO (parasites)!! Gael is right, if you can't find anyone to acknowledge them, then an option is to self treat. Many people wake up and realize this if their docs won't listen.

A big part of the problem is the tests are pitifully inaccurate, so the doc's don't think people have them.

Visit THE PARASITE WARRIOR'S SUPPORT THREAD (loaded with info).

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

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GretaM
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Luvema-Have you contacted your LLMD to let him/her know of the way your body has been since quitting abx?

It is important your LL knows about this.

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luvema
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My doc is out of town, but I have an appt coming up with her.

is anyone familiar with these type of symptoms?

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Ema

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Lymetoo
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You have nothing to lose by treating for parasites.

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--Lymetutu--
Opinions, not medical advice!

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LisaK
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do you mean like twitching? My head will move to the side and it seems to come in threes... if it goes over once then it follows right away with a couple more.

Same for my arms. and shoulders.

Sometimes my head moves like it is saying "no".

I thought these were all neuro symptoms of lyme, but maybe yours are different?

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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mlg
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Treat parasites with colonics.
Anti-malarials with heparin and artemisinin rotating with crypto

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luvema
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Would drinking water with a little bit of pink salt in it help with parasites?

@Lisa, yes, I get movements like that also.

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Ema

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GretaM
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Ema-when I quit abx including IV abx for a week, my body reverted back to this.

My body did this pre treatment.

It has went away since restarting abx.

For me it was neuro lyme.

I know lyme is supposed to be s slow grower but many sources say lyme spirochete will emerge from the cyst form after abx is removed.

Perhaps this is what happened with me.

It is important to tell your LL as soon as you can about this.

What form of cyst buster were you on when you were on IV abx? Tinidazole, flagyl etc?

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luvema
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@Greta, thanks for the info.

I was on Flagyl.

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Ema

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Ames777
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I started doing something very similar with migraines, shaking head movements, rocking back and forth and body swaying immediately after I started minocycline. I think it was the neuro Lyme getting blasted, but the doctor just said the minocycline was too strong for me.

I agree that it doesn't sound fungal and sounds like the girl from Under Our Skin. If you haven't seen it, you can watch it free on Viewster.

Definitely tell your doctor about this. It is no fun having a body that moves itself. I hope things get straightened out soon.

--------------------
Amy

Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever)
Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well

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ladycakes
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Mine turned out to be encepahlitis (brain swelling). I had the twitching, terrible pressure headaches, general confusion. It really feels like you're losing any kind of control over your body.

My LLMD switched me to a different antibiotic, and thankfully that did the trick.

Posts: 306 | From Brownsville, PA | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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