RE: Re: How many people have returned to normal life after Lyme via Buhner protocol or?

January 14, 2010

I have late stage neuro Lyme--5 1/2 yrs before diagnosis last June. I've been

on various combos of abxs starting with the standard one month of Doxy 100 mg 2

x way. I started taking long hot showers to raise my body temp (advice found

online) for many weeks plus a 146 F sauna for 15 min--which really set me back.

I had the herx reaction from hell: almost completely incapacitated for 6

weeks--too weak to even sit up and watch TV. Very strong tingling, itching,

vibrations throughout body,loud ringing in ears,heart palpitations, zoning out,

light sensitive, imbalance, panic attacks. Before abxs I was going down hill

beginning of '09, after coping fairly well with periods of feeling OK. Early

'09 I noticed a decline in health: intense mood swings, crying jags, increasing

fatigue with exertion & some shortness of breath, heart palpitations. For me

the first round of abxs (Doxy) coupled with raising my body temp daily created

too intense a herx reaction. The LLMD I went to for a consult in Aug last year,

kindly suggested not to raise body temp until I felt better. He took me off Doxy

saying he didn't think it was working for me. I'm just beginning to have some

energy and mood stability after 3 months of Amoxicillin (which did help quite a

lot), then Zithromax & mepron for a month, then Zithromax & oral ceftin for one

month. Turns out the Zithromax was not working, so switched to Ceftin & Biaxin

which seems to be working: no mood swings or depression, better energy, but

still suffer fatigue (requiring a nap) if I over exert myself. But the weird

sensations in my nervous system (arteries as well?) have not gone away nor have

the cognitive deficits. I asked the nurse practitioner if the spirochetes were

still chewing on my nerves and she said no, that what I was experiencing was the

damage done by the spirochetes ( & in my opinion the extreme herx) which the body

would repair over time. I am going to have a PICC line inserted in early

spring for IV abxs. If and when I get to remission, I'll maintain that with

Buhner protocol etc. I won't go on abxs indefinitely. So far I'm tolerating

them quite well.

Hope this is helpful.

[ ] Re: How many people have returned to normal life

after Lyme via Buhner protocol or?

knotweed- thanks for the feedback- I'm in a low spot right now. All hell broke

loose after a fungal treatment I decided to try (big mistake) -of

flagyl/diflucan)I've been a really bad state/totally stopped sleeping and major

neuro symptoms and new ones I did not have before like numbness.....

Something similar like this happened to me 2.5 years ago when ramping up quickly

on buhner herbs and it took me 5 months to recover (but did not recover back to

baseline). This is far worse this time.Neuro plus totally not sleeping now....

I know you did abx.. do you think abx was essential to your neuro recover? I

seem to get alot worse with my first experience and new scary symptoms that

aren't going away.

I'm seeing a nurse/naturopath who has lyme herself and treats-she thinks I'm

totally toxic and I don't methylate well/detox. She wants to get me sleeping

,detox me first and the dicuss further treatment. Caught in cycle since

treatment terrifies me based on my experiences thus far. I was able to take

cat's claw, devils claw , sarsparilla after I stabilezed/recover from first huge

flare/neuro explosion. I know I have to take it very carefully.

Other lymers tell me that you will get new scary neuro and they will ater

resolve on abx. You have to feel like your dieing before you get well? I'm not

sure I can take that path. Buhner says follow the wisdom of your body? Where is

the wisdom in that? All so confusing.

> >

> > Has anyone reversed late stage neuro lyme symptoms i.e. muscle jerking,

balance, twiching, extreme cognitive issues ,numbness , coordination etc?

>

> for me those problems have improved a lot on the protocol.

>

> I still have some cognitive issues (the problems with spelling/typing on the

keyboard, slow reaction etc., some memory problems). Numbness, tingling and

crawling sensations ('bugs in the skin') are almost completely gone; I think

those are primarily a side effect of deficiencies in B vitamins, Mg etc.

>

> I had severe vertigo before starting the protocol, 95% gone now but still have

some problems with balance/nausea from time to time. Also sometimes a strong

'buzzing' all over my body, which feels like all the small muscles and arteries

are vibrating. It comes and goes, mostly have that early in the morning.

>

January 14, 2010

Hi,

You sound exactly like me, I always had a normal temp, now I'm around 95 -

96, I'm always cold. ears ringing, buzzing, itchiness, buzzing in my

body, can't feel my fingers or toes at times, eye issues, vertigo issues,

panic attacks, I can't sleep at night, my body won't relax. I did a

bunch of oral abx's and recently did IV Rocephrin, and then 3 months of

bicillin shots, i actually felt better before i did all that. I have

severe mood swings (anger) at times.

I have Bartonella, do you have it?

At least some of your symptons went away, the eye issues are murder for

me, even when I close my eyes, I see spots and they feel like they're

moving and sore all the time. I feel like I have a layer of something on

my eyes making everything cloudy.

I contracted c difficile from the abx's, dr's never told me to take

probiotics and I got so ill. So now I take them 2 hrs. after every abx

dose, and it helped a lot.

It's so frustrating, not to mention financially draining!

I live in CT, where are you from?

State of CT stinks for insurance laws; they would only let me do 1 mo. on

the IV abx's, probably if I did the 3/4 mo's it would've worked.

Thanks for listening to me vent!

From:

KTOvrutsky@...

To:

Date:

01/14/2010 01:55 PM

Subject:

Re: [ ] Re: How many people have returned to normal life

after Lyme via Buhner protocol or?

Sent by:

I have late stage neuro Lyme--5 1/2 yrs before diagnosis last June. I've

been on various combos of abxs starting with the standard one month of

Doxy 100 mg 2 x way. I started taking long hot showers to raise my body

temp (advice found online) for many weeks plus a 146 F sauna for 15

min--which really set me back. I had the herx reaction from hell: almost

completely incapacitated for 6 weeks--too weak to even sit up and watch

TV. Very strong tingling, itching, vibrations throughout body,loud ringing

in ears,heart palpitations, zoning out, light sensitive, imbalance, panic

attacks. Before abxs I was going down hill beginning of '09, after coping

fairly well with periods of feeling OK. Early '09 I noticed a decline in

health: intense mood swings, crying jags, increasing fatigue with exertion

& some shortness of breath, heart palpitations. For me the first round of

abxs (Doxy) coupled with raising my body temp daily created too intense a

herx reaction. The LLMD I went to for a consult in Aug last year, kindly

suggested not to raise body temp until I felt better. He took me off Doxy

saying he didn't think it was working for me. I'm just beginning to have

some energy and mood stability after 3 months of Amoxicillin (which did

help quite a lot), then Zithromax & mepron for a month, then Zithromax &

oral ceftin for one month. Turns out the Zithromax was not working, so

switched to Ceftin & Biaxin which seems to be working: no mood swings or

depression, better energy, but still suffer fatigue (requiring a nap) if I

over exert myself. But the weird sensations in my nervous system (arteries

as well?) have not gone away nor have the cognitive deficits. I asked the

nurse practitioner if the spirochetes were still chewing on my nerves and

she said no, that what I was experiencing was the damage done by the

spirochetes ( & in my opinion the extreme herx) which the body would repair

over time. I am going to have a PICC line inserted in early spring for IV

abxs. If and when I get to remission, I'll maintain that with Buhner

protocol etc. I won't go on abxs indefinitely. So far I'm tolerating them

quite well.

Hope this is helpful.

[ ] Re: How many people have returned to normal

life after Lyme via Buhner protocol or?

knotweed- thanks for the feedback- I'm in a low spot right now. All hell

broke loose after a fungal treatment I decided to try (big mistake) -of

flagyl/diflucan)I've been a really bad state/totally stopped sleeping and

major neuro symptoms and new ones I did not have before like numbness.....

Something similar like this happened to me 2.5 years ago when ramping up

quickly on buhner herbs and it took me 5 months to recover (but did not

recover back to baseline). This is far worse this time.Neuro plus totally

not sleeping now....

I know you did abx.. do you think abx was essential to your neuro recover?

I seem to get alot worse with my first experience and new scary symptoms

that aren't going away.

I'm seeing a nurse/naturopath who has lyme herself and treats-she thinks

I'm totally toxic and I don't methylate well/detox. She wants to get me

sleeping ,detox me first and the dicuss further treatment. Caught in cycle

since treatment terrifies me based on my experiences thus far. I was able

to take cat's claw, devils claw , sarsparilla after I stabilezed/recover

from first huge flare/neuro explosion. I know I have to take it very

carefully.

Other lymers tell me that you will get new scary neuro and they will ater

resolve on abx. You have to feel like your dieing before you get well? I'm

not sure I can take that path. Buhner says follow the wisdom of your body?

Where is the wisdom in that? All so confusing.

> >

> > Has anyone reversed late stage neuro lyme symptoms i.e. muscle

jerking, balance, twiching, extreme cognitive issues ,numbness ,

coordination etc?

>

> for me those problems have improved a lot on the protocol.

>

> I still have some cognitive issues (the problems with spelling/typing on

the keyboard, slow reaction etc., some memory problems). Numbness,

tingling and crawling sensations ('bugs in the skin') are almost

completely gone; I think those are primarily a side effect of deficiencies

in B vitamins, Mg etc.

>

> I had severe vertigo before starting the protocol, 95% gone now but

still have some problems with balance/nausea from time to time. Also

sometimes a strong 'buzzing' all over my body, which feels like all the

small muscles and arteries are vibrating. It comes and goes, mostly have

that early in the morning.

>

January 14, 2010

I also have trouble sleeping, was very addicted to Ambien and it got to

the stage where I was only getting 2/3 hours sleep a night on that; when

you start it you get a good 8 hours sleep and as time goes on, you get to

the point where you get barely any sleep on it. I weaned myself off of

Ambien; it was messing up my memory and I was in an even bigger fog for a

few hours in the morning from it.

I now take Xanax to help me sleep, my nervous system is messed up and the

Xanax (I actually do generic and only take 1/2 a pill) actually helps my

body to relax and I'm able to actually get 7 hours sleep on it. I make

sure the room is dark, I put my fan on to make noise so I don't hear the

ringing in my ears, and I cover my eyes with something because my eyes

bother me and I actually can get some sleep. Some nights are better than

other nights. My kids laugh at me because of all my rituals!

I would eventually like to get off the Xanax, but for now it helps me

sleep, I guess there are worse things I could be taking.

Does anyone have any suggestions for non-prescription ways to get some

sleep?

January 14, 2010

I have used melatonin for awhile - 2 (I think they're 6's) on Sunday, then 1

Mon-Th then none Fri and Sat cause I can sleep in.

Same thing as you - room dark; quiet; no blinking lights; some days that

doesn't work if I'm really stressed but usually I'm OK. Camomille tea or

sleepy time tea I've used as well.

Hot epsom salts bath knocked out my 4 days of insomnia just recently. Tried

a cup one night and it didn't work; so the next I poured in the rest of the

box. That worked!

Let me know if those help at all.

_____

From:

[mailto: ] On Behalf Of alicia.colon@...

Sent: Thursday, January 14, 2010 1:53 PM

Subject: Re: [ ] Re: How many people have returned to normal