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» LymeNet Flash » Questions and Discussion » Medical Questions » anyone have only neuro symptoms

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Author Topic: anyone have only neuro symptoms
overlyme
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Member # 43455

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any one have neuro symptoms, no flu like feelings

and no achyness..feel like my head is swimming

throat feels funny in the front at the base of

the throat, getting angry and feeling like Im

off balance, had lyme and company 30 years ago

and treated from 2003 on too now..I am on

rochephin and rifampin for a year now..this

is my monthly cycle this coming week..i just

dont feel like i am getting better or this is a

neuro herx? feel like so off its not funny..

what do you guys think?

--------------------
been there done that!

Posts: 92 | From ny | Registered: Mar 2014  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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Have you tried going without the meds? Maybe it's the meds.

Rifampin really did a number on me.

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

Posts: 95250 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

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Very sorry overlyme
You have had a long journey.

We will ever be recognized in the medical field and be able to stop sufferering in silence? We are the BEST patients, we will try anything to get well. We show up on time, follow doctor's orders, pay out of pocket, travel long distances, take notes, become educated about our prognosis(s) and know we are in this for the long haul.

And we continue to have hope.💚

My neuro symptoms diminished by 75% after 4 months of aggressive multiple antibiotic protocol. But after numerous relapses (after stopping antibiotics), the standard go-to meds don't work as well anymore.

I have been on professional grade herbals for almost a year.
Noticable improvement at first but overtime they too don't work as well. I have been rotating new herbs and am staying stable except for Neuro brain issues, which are getting worse.

I really think we need spect/pet and thermography scans of our brains. Football players get these routinely. They aren't covered by insurances except for certain conditions. What these tests will show is that there might be frontal lobe inflammation/damage. New tools, fresh set of eyes, new strategies.

What is autoimmune encephalitis?
https://www.instagram.com/p/CHG_gpFD44x/

Because of Covid, everything is on hold now.
Stay in the battle.

Posts: 2283 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
daisys
LymeNet Contributor
Member # 11802

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I have had those symptoms before. I really feel for you. Sometimes, I even felt like I was turning into a spiral, so that when I walked I was concerned that my foot would come down in a funny way and trip me.

Rifampin, with it's companion med, was prescribed a couple of weeks ago. I've stopped taking it, because I felt worse right away. I tried going down to every other day, but it's taking longer than that to feel better.

The symptoms for me are worse fatigue, loss of appetite, achiness, periodic pain in the gut, and I've been feeling glum which isn't like me. I'll be asking for a liver function test this week.

Also, I have a feeling of something not being right. We are the world's expert on our own health situation, and sometimes there are no words to express what bothers us.

If you make just one change at a time, and take note of any pertinent information, it will help. This is a complicated illness, and we take so many different products, it's sometimes hard to keep track of it all. It's a challenge to know if you are having a herx reaction or not.

I actually logged on today to search "rifampin" to learn more about it's effect on Lyme disease patients. I'd like to see if it's benefited others.

Posts: 486 | From New Mexico, USA | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
marie
LymeNet Contributor
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Does anyone with feel so ill all the time. I have strong neuro symptoms and jt/tendon pain also. But I don't know why I feel so ill constantly.
Posts: 475 | From southern new jersey | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
severalbites
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I suffered from neurolyme and burgdoferi.both.i was 1 year and half in minocycline rifampfin and erythromycin.

My symptoms did not improve.i went to Germany and did use bubonic and ozone.than my neurosymptoms improved.

Than I treated babesia and fl1953.I was in remission 5 years.lyme was back.now in cowden protocoll.lyme never left my symptoms.

I was suacidal. Now I am normal calm .I just ended in encephalitis and lost some memory from inflamation.i am disable but I live a normal happy life.

I had borrelia garini for 20 years and burgdoferi in usa.bionic and ozone helped me.

--------------------
neuroborreliosis bartonella babesia

Posts: 11 | From massachusets | Registered: Mar 2020  |  IP: Logged | Report this post to a Moderator
stella marie
LymeNet Contributor
Member # 7216

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overlyme, sorry you are still dealing with this crap.

I had crushing fatigue and flu like symptoms at first so no, not just neuro symptoms for myself. It progressed from there.

I hope you find answers, this is such an incredibly hard road to travel.

--------------------
Stella Marie

Posts: 694 | From US | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
   

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