Need advice from MS/Lyme folks --

[Guest guest]

Hello everyone and happy new year! Wishing vibrant health to all in 2010!

Am at a low point and need some advice. I am caught in the is it lyme/autoimmune

and is it a herx or causing damage to my body dilema/I don't seem to tolerate

intense herbal protocols or drugs and have gotten bad herx's or flares (first

one lasted 4-5 months after stopping herbs) with new symptoms emerging and

lasting not recovering to baseline. Sorry for long post- I am now on my 2nd

intense " flare/herx " and in downward spiral with new and more intense neuro

symptoms that have not subsided that started after a drug antifungal treatment

of flagyl/Diflucan. I am wondering is this a herx or am I chemically

sensitive/sensitive to herbs/drugs and causing damage to my body? Should I go

back on LDN? I am non functional right now with dizzy/constant sick feeling,

weak, total insomnia/stopped sleeping totally for weeks now , jerking/twitching,

coordination issues some numbness showing up that didnt' exist previously, etc.

etc. . I am now non functional and not sure what to do. I see my PCP to discuss

lyme/abx protocol this week that I had scheduled a couple of months ago. But

after this first experience my body is screaming and I'm worried it will now

take me 5 months to recover (like last time on herbs see below) and I will have

additional new /remaining symptoms that will not go away like before/won't get

back to baseline. Can you comment on your experences? I'm considering going back

on LDN and taking it very slow--when I'm stronger maybe consider abx or

continued herbal protocols if i can get back to baseline and get sleeping again.

I'm caught in is this lyme or some variant of autoimmune and am I causing more

damage than good. Should I just go on LDN and candida diet.. and see if I can

maintain. Should I see another neuro? I only have seen an MS specialist/neuro

in past.

My history is FMS (1998) diagnosis-- horrible insomnia, headached up back of

neck, stiff neck, stiff muscles (especially left side),muscle spasm in neck and

sometimes upper back, some brain fog and cognitive issues, chemical

sensitivities. Intense pain for 2 years then managed to get back to living with

low carb diet and moducare sterinol (immune balancer -company says used for

HIV?). Went off of moducare after 3/4 years- had bad heart palps and anxiety,

and brain fog but manageable while on moducare.

2006-optic neuritis with nerve atrophy in one eye, big neuro symptoms began-

intense brain fog, fine motor coordination, insomnia, some muscle

jerking/twitching, left hand tingling and numb after contrast die used with MRI

and body started jerking/twitching same night as MRI(though I had reaction to

candolinium). Brain MRI was normal. 2 bands positive for IGENEX/Lyme.

Dec 2006-things settled down/started sleeping again and with osteopath went on

zhang lyme protocol. Did not seem to have herx's-both eyes continued to hurt off

and on and had some brain fog.

May 2007- decided to add buhner herbs into mix and got permission from zhang to

do so.

July 2007while ramping up on buhner with zhang-explosion of nervous system that

lasted for 4 months or so). Per zhang went off all herbs. new symptoms-loss of

coordination,balance, body shaking, felt weak especially in legs,

jerking/twitching,eyes hurting, intense brain fog, swallowing weird, problems

with speech, insomnia(but sleeping but badly),reaching/missing things, burning

sensation up back, some dizzy/sick feeling which would come and go, some

numbness in left hand. Legs had previously twitched only after exercise =now

they twitched all the time as well as throughout the body. This lasted for a

full 2 months until starting to see some improvement even on no

herbs/supplements.

Sept 2007 -started LDN 2.25 mg- still in this " flare " LDN made me more sick

feeling for a couple of weeks/ maybe month? Full MRI of brain and spinal were

normal. MS clinic said no MS since no lasting numbness and MRI normal

Nov 2007 started to feel better/stronger and sleeping better. Back to land of

living by december but bad brain fog, eye pain, and some shakiness persisted.

Was on LDN for a year -seem to improve but not back to baseline previous to July

2007 explosion of symptoms-- but also did intense candida diet, meditation, and

slowly added a few buhner herbs into the mix starting spring 08. Decided to go

off LDN Nov 08 since bad brain fog persisted and some of symptoms and though it

was the diet/meditation that was helping more than LDN.

Stable through 2009 but brain fog persisted, twiching, some jerking but minor at

night, some jerking of hands during the day (I have worked a major work from

home mostly fortune 500 sales job throughout all of this). Sleeping was key and

I did find when I slept well , I felt much better and less brain fog.

Fall 2009- started to have flare up- poor sleep, frequent urination at night,

more brain fog/shakiness/but functional

Nov /end 2009- Decided to Dr. Mccandless Diflucan/Flagl yeast protocol. All hell

broke loose after 1 week on flagly(continued diflucan for 3 weeks. Intense brain

fog like I didn't know existed- weak, nervous /sick /shaky feeling especially in

head/brain. Even after off all drugs continued to spiral down and still in

downward spiral Same symptoms as Jul 2007 only now more extreme and new symptoms

like slight lasting numbness. Feel very ill and non functional/totally not there

for my family. Considering LOA for work. I can't function right now. Can't seem

to do much of anything right now and confused on right path forward. Hope this

is readable! Sorry for the novel. Hopefully someone will not be afraid to read

this!

( I have eaten a very good diet for last 12 years, gluten free- walk every day ,

meditate, stretch etc....so health lifestyle EXCEPT for job stress)

Age 48/female

FMS diagnosis '98

Optic Neuritis '06

Lyme IGENex positive 2 bands '06

LDN 2.25 mg '07-'08

Zhang (8 months)/ Buhner herbal protocols (1 month on total until crash and

then 1 year on cat's claw, 18 month sarsparilla/devils claw a year later after

recovering from crash)