posted
I've had this for 12 years..originally FMS diagnosis (stiff neck, headaches, muscle pain that spread through body, stiffness on left especially, insomnia , some brain fog etc.)
3 years ago neuro started:
optic neuritis/brain fog-insomnia. sleep worsened Then while on herbal protocol- worse brain fog, some foot drag--eye pain continued
Then "neuro explosion" on herbs- muscle jerking /twitching, shaky, coordination issues, thumb twiching, no sense of depth/where things are at reaching, severe brain fog, some swallowing weird things going on, burning sensation up back, dizzy sick feeling, balance issues, etc.-lasted 4 months or so after stopping herbs.. some symptoms remained like slight tremble in left hand when I cocked my thumb, worse brain fog than before herbs etc. but could function just did not feel great.
Stable on LDN for a year or so and was stable but brain fog some neuro persisted but functional. Went off LDN and stayed "stable" or so I thought for a year. Took cat's claw and some herbs during this time.
Symptoms worsened this fall and then neuro explosion again starting with taking flagyl/diflucan ( 1 week flagyl/3 weeks diflucan) . These were the first pharmecuticals I'd taken. Still totally sick/non functional even though stopping medication 5 or 6 weeks ago? Nervous system still in overdrive. This time I have a dizzy/sick feeling in my head I never had before. Hard to function - can't sleep and don't feel good sitting, standing up , laying down etc!
Any thoughts?
Is there hope? Anyone have similar story to this and recover with these deep neuro symptoms and issues with herbs/medication? I am afraid to start abx given how ill I currently am and how I seem to get so worse and not recover out of it for many months from past experience.
Posts: 200 | From New England | Registered: Dec 2009
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posted
If you've gotten this bad after treating with herbs for years why are you afraid to give abx a try?
A week of flagyl and 3 of diflucan isn't going to have much effect.
Before I go any further - YES, you should be able to recover quite a lot from the problems you're now experiencing. That's the good news - make sure you remember that you CAN get BETTER.
Now for the bad news you're almost certainly talking many months of very serious abx to get better and not relapse. You NEED an LLMD. You also need good insurance - getting better won't be cheap.
You're chronically ill now. You need a good doctor and good medicine. We can tell you our experience, but can't prescribe for you. Please go over to the "Seeking a Doctor" board and seek a doctor.
Posts: 98 | From Maine | Registered: Jul 2009
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posted
You will not get well unless you do abx. The sicker you are the more you need abx. Don't be afraid to begin treatment.
I barely knew my own name 4 yrs ago and after 2 yrs of abx lead a full life.
Rifampin, Zithromax, Doxy and Bicillin are what got me well.
Tried herbs and every other treatment in the book before I did abx and it was a big waste of my life and $$$$. Some herbs help, but you must use them with abx.
Do the abx!!!!
Posts: 770 | From USA | Registered: Jul 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, there is hope with treatment. I had those neuro symptoms and more.
Treatment with a good llmd and a couple years of abx made me well again and got rid of the neuro symptoms.
I started off with amoxicillin and built up dosages so that the die-off was manageable and not too bad. I did have some rough days during the first year, and it can take time to see results.
Treatment was much better than severe illness for me. There is really no comparison. I am glad to have my life back and hope that others here will regain their health. I hope you find the courage (and doctor) to treat this illness effectively.
Remember, slow and steady is a treatment mode that works for many.
Posts: 2557 | From home | Registered: Aug 2006
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I have been wondering the same exact thing and it's weird how my story sounds a lot like yours in so many ways.
Recently (in the past few days) my neuro sympotoms have gone from bad to worse and I have severe balance issues, dizziness, head pressure, vision issues, severe heaviness in my body, etc. I have just done a round with Flagyl and honestly I think that is what set this off.
I really feel that antibiotics are essential here. You have a very deep neuro infection and you need abx to get that bacterial load down. You can always transition to herbs at a later time but you really need to do abx and a good LLMD that treats co-infections such as babesia and bartonella.
Take care and please don't give up hope here! You can and will get better, you just have to treat.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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posted
Thank you for your support! Vermont_lymie--I live in New England and wonder what LLMD you used? Is there a way to privately email you lymenet?
My GP is now treating lyme using Burrascano's guldelines.. he says he's treating 2 new lyme patients a week now. And every week some are getting well and going off abx. He wouldn't give me any success rate.
So you think its ok to go with my GP of 12+ years?
He is also going to detailed testing of heavy metals, mycoplasma, detox ability, adrenals etc (at my request not his).
He does attend the lyme conferences now- he handed me a presentation and burrascano's guide at the appointment today.
Posts: 200 | From New England | Registered: Dec 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi there,
Will PM you after I clear out my mailbox a bit! I think it is pretty full, so hang on and I'd be happy to share information.
Burrascano's guidelines are very good. Sounds like your doctor is becoming or already is an llmd, or a new one? Will be in touch.
Posts: 2557 | From home | Registered: Aug 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have had almost every neuro symptom you listed. Balance issues, lack of perception, brain fog, twitching, jerking, eye pain, migraines, electric shock feeling, trembling, dizziness, etc. You get the picture.
After 20 months of treatment I am starting to see improvement. The point is, you can get better but it is going to take a while. And a lot of patience.
It is normal to be afraid of the illness and the treatment. We have all been there. Gosh I'm still afraid! But it does get better. There is defintely hope, but you have to be willing to treat to get better.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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