Im back--sorta

[Guest guest]

well I now have periods of 20-30 min a few times a day without

dreadful vertigo or severe loss equilibrium- but Im still battling

serious sx. Ive regained a bit of wt meaning Im absorbing again--

maybe I can soon cut out those Ensure's and baby/pureed foods too.

still have my loop monitor on...getting many interesting skipped

beats but so far NO pauses...the old watched pot refuses to boil and

we really NEED to diagnose whats happening,. BUT its a good thing I

suppose that since the mino all's been quiet cardiac wise.

and the ONLY thing thats slowly giving my life back??

Minocycline and Suprax...too bad it may be at the sacrifice of the

rest of my hearing though so eventually I again want to try herbs,

once Im no longer in danger

anyway to ALL who have emailed and sent prayers and support THANK

you from me and Evan...at the risk of sounding hoggish--keep the

prayers coming as we do for all of you!! theyre WORKING!!!( for me

anyway)

Ann, Selmanayka, Jnanda, Carolyn and the rest whose names slip my

foggy brain...THANK you all...youre in my heart!!!

to those I havent posted back to...until now I havent been able to

access much on boards...and only recently have had a tiny bit of

help from others--dictating to them what to type

to those I havent phoned...I appreciate your numbers but with the

several diff changes of aides I cant find a single paper ( hubs

printed off your emails and handed them to me, they amassed on the

coffee table with meds and medical info etc etc)

IF you can, re-email phone numbers direct to me now, OR if you

prefer now that I can sometimes get to the PC or have someone read

it to me, just use my email.

still in need of GOOD aides..cant get 'em here.Evan and I are back

to " least sick person today gets the juice " protocol

and unfortunately again hubs reached his limit...and has retreated

into his " I cant handle chronic illness, too much giving without

getting, what's in it for me " world..l sigh...Im, thankful for the 3

months Evan and I got from him support wise but now we are back to

almost ZERO

to clear up something...Im NOT losing my LLMD thank G-d...its the

stupid specialists that are all following IDSA and Nuero Assoc crap

everytime they even suggest its them or myLLMD theyre FIRED, without

so much as a blink ( ok maybe with a tiny sob and cardiac

palpitation knowing the next ride to the ER will be hell)

it is a matter of time before many LLMDs WILL have to choose to stay

in Lyme or leave...unless the bullying stops.

Im sad to report however that Evan continues to fail. despite

Buhner, Cowden,Zhang , abx, all of it. I truly think it has to do

with his low IGG and yet while abnormally low AND despite fact that

when last year IV IGG made him a LOT better

all Drs keep saying is its not " low enuf " and he isnt " sick

enuf " ...FOR WHOM???? this 18 yo cant get out of bed most days and

has NO life

Mikayla while I appreciate your offers, he is NOT the type to speak

to anyone re: his illness. Even when he is on PC with his few

friends who havent abandoned him, he very stubbornly stays off the

topic. he barely even talks about it to me beyond what sx to report

to our LLMD

.. His attitude is he has to LIVE with it and why shoudl he also have

to TALK about it...

typical MIT ( Man in Training LOL)

I hope ALL of you have been fairing as well as can be expected and

Ill try to " stop by " from time to time

Ill also keep this site in the loop for any activism, news on the

front.

Have a healthy and better New Years!!!

be well

Finette

and if you need to contact me Im again trying to access my email a

few times a week...or get help with it

finrussak@...

[Guest guest]

Is there a hearing loss associated with Suprax or Minocycline? My Lyme

symptoms include hyper hearing, everything is way too loud!

I recently read that aldosterone deficiency can cause hearing loss that is

reversible if you start taking aldosterone, which would also raise your

blood pressure a bit. Lyme is known to cause multiple hormone block or

deficiencies.

-- [ ] Im back--sorta

well I now have periods of 20-30 min a few times a day without

dreadful vertigo or severe loss equilibrium- but Im still battling

serious sx. Ive regained a bit of wt meaning Im absorbing again--

maybe I can soon cut out those Ensure's and baby/pureed foods too.

still have my loop monitor on...getting many interesting skipped

beats but so far NO pauses...the old watched pot refuses to boil and

we really NEED to diagnose whats happening,. BUT its a good thing I

suppose that since the mino all's been quiet cardiac wise.

and the ONLY thing thats slowly giving my life back??

Minocycline and Suprax...too bad it may be at the sacrifice of the

rest of my hearing though so eventually I again want to try herbs,

once Im no longer in danger

anyway to ALL who have emailed and sent prayers and support THANK

you from me and Evan...at the risk of sounding hoggish--keep the

prayers coming as we do for all of you!! theyre WORKING!!!( for me

anyway)

Ann, Selmanayka, Jnanda, Carolyn and the rest whose names slip my

foggy brain...THANK you all...youre in my heart!!!

to those I havent posted back to...until now I havent been able to

access much on boards...and only recently have had a tiny bit of

help from others--dictating to them what to type

to those I havent phoned...I appreciate your numbers but with the

several diff changes of aides I cant find a single paper ( hubs

printed off your emails and handed them to me, they amassed on the

coffee table with meds and medical info etc etc)

IF you can, re-email phone numbers direct to me now, OR if you

prefer now that I can sometimes get to the PC or have someone read

it to me, just use my email.

still in need of GOOD aides..cant get 'em here.Evan and I are back

to " least sick person today gets the juice " protocol

and unfortunately again hubs reached his limit...and has retreated

into his " I cant handle chronic illness, too much giving without

getting, what's in it for me " world..l sigh...Im, thankful for the 3

months Evan and I got from him support wise but now we are back to

almost ZERO

to clear up something...Im NOT losing my LLMD thank G-d...its the

stupid specialists that are all following IDSA and Nuero Assoc crap

everytime they even suggest its them or myLLMD theyre FIRED, without

so much as a blink ( ok maybe with a tiny sob and cardiac

palpitation knowing the next ride to the ER will be hell)

it is a matter of time before many LLMDs WILL have to choose to stay

in Lyme or leave...unless the bullying stops.

Im sad to report however that Evan continues to fail. despite

Buhner, Cowden,Zhang , abx, all of it. I truly think it has to do

with his low IGG and yet while abnormally low AND despite fact that

when last year IV IGG made him a LOT better

all Drs keep saying is its not " low enuf " and he isnt " sick

enuf " ...FOR WHOM???? this 18 yo cant get out of bed most days and

has NO life

Mikayla while I appreciate your offers, he is NOT the type to speak

to anyone re: his illness. Even when he is on PC with his few

friends who havent abandoned him, he very stubbornly stays off the

topic. he barely even talks about it to me beyond what sx to report

to our LLMD

... His attitude is he has to LIVE with it and why shoudl he also have

to TALK about it...

typical MIT ( Man in Training LOL)

I hope ALL of you have been fairing as well as can be expected and

Ill try to " stop by " from time to time

Ill also keep this site in the loop for any activism, news on the

front.

Have a healthy and better New Years!!!

be well

Finette

and if you need to contact me Im again trying to access my email a

few times a week...or get help with it

finrussak@...