Rich

[Guest guest]

HELLO RICH,

I read your post about your issues.... I am wondering what have you done

other than medicines... I myself am 43 and was first infected at 10 yrs old

before they knew what lyme was, I was at camp and had ticks pulled off of me,

then had total rash, fever, couldnt use hands and couldnt walk etc etc they had

no idea what was wrong with me.... after a few months improved but had

different issues whole life as well as reinfection as I pulled ticks off every

day in summer growing up and mid teens and late twenties think was definitely

reinfected, had major typical lyme --- teen was unable to concentrate or attend

school, had insomnia, 3 day long severe headaches/migraines.... etc etc....

and in late 20's had some kind of seizures (small ones) and bells palsy

symptoms, and sheer exhaustion among other things etc...

those are just some of my issues along the way... the docs did nothing for

me so of course i went a few times then stopped complaining as they did not

believe or help me anyway...

had a major crash of body and immune system a few years ago due to major

family crisis issues and life tragedies all in a row... and BAM suddenly I was

100 lbs, could barely walk, couldnt breathe, couldnt swallow, restless legs,

no memory, vision, shakiness, stabbibg pains, numbness all over, swollen lymph

system, my hands were so bad almost curled up like a crippled person - i

could not open a jar!!! and barely zip my clothes etc..... and weird migrating

pains and discomforts, no attention span, digestive issues, horrible pain in

the head considered shooting myself to end the pain, gushing sounds in ears,

terrible rages/anger, super super smell sensitivity to everything, and

couldnt drive, function, nothing... all textbook stuff...

that is only part of the list of course...

of course no answers from doctors, tests and such, all they found was

neutropenia ... a low count of a type of blood cell, and said oh maybe u have

cancer of some kind....

so i knew it was time that i found a new doc and someone reminded me of the

fact that it could all be related to lyme..... so got treated after all these

years ( i had asked years ago about treatment but they said it would do no

good since i got lyme originally so long ago... of course the docs just did not

know back then!)

so anyway after 6 weeks on abx i gained almost 20 lbs back! BUT what I

wonder is what else do YOU do for your health support.... I also took daily

then

weekly and now biweekly shots of B12 at home, also was on low dhea, high

iron, a probiotic for my whole system, and just made sure i ate better/healthier

etc.... got out for fresh air and sun...

I dont think i am CURED... but I am off the abx after a year of them and

with each month I felt things getting better, and the herx'es were horrible at

first but got easier as it went along,,,, at first i was so shakey and dry

heaves and weakness and headaches etc etc etc.... anyway although i will

never be 100% of what i would be with never having lyme, I can say i feel 200%

from what i was back 2 years or so, i thought i was dying.... so did the doc

who saw me! I do think i would have died or commited suicide for relief had i

not gotten the abx and taken the iron/b12 etc to help myself heal.... I

still have not been able to get myself to the point where i can exercise each

day or work too hard too long but i can get up in the morning and get thru the

day, heck I am here typing, that was an effort - i typed terrible, couldnt

spell and it would take so long.... now i can do it. The smell sensitivity

has eased. apparently the iron was so low, that was why i couldnt swallow, i

did not know that was a symptom of low iron, also the shortness of breath is

low iron also.... and the b12 helped my nervous system so the shakes and

tremors and stabbing pains and numbness and restless legs all got better.....

and

the rages are GONE i surprise myself how calm i can be.... going thru the

months of meds i felt a different system in my body getting better in

stages.... it was weird but very distinctive... the longer on the meds the

more they

penetrate the body/organs and i felt it working at every level....

Sometimes i get some symptoms back but they are manageable as they are not

all at once, and the minute i feel them coming on i eat better, take it easy

etc to keep if from getting worse. Stress definitely plays a role in how

well our bodies can manage the overload.

Somehow I managed to live life, work

(although years ago I learned i had to work around myself/what must have

been due to lyme/ by working for myself at my own pace etc... and then a few

years ago could barely walk or get food for myself or shower or dress nor think

or remember, so i could not do any work)

raise kids take care of home and etc etc.... looking back it amazes me i

did it in a half of health state i was in, i wonder how much more or how much

better, my life would have been if i was not always battling lyme.... i

survived it until a few years ago my body / immune system / crashed from

everything.... then my life was falling apart...

that is so typical of everyones stories, hard workers, go getters, competent

self-sufficient and sane people suddenly crash and cant even take care of

themselves... and usually it is during a time of extreme stress/life

crisis/loss/tragedy etc..... and next thing u know they lose jobs, family,

home, life

savings etc..... and of course credibillity with the people in their lives

who dont get it..... my family did not get it and lost some patience with me

and did not go all out to help or support me,

it is so true if you have not been there you will never know what it is all

about....

support from other lyme inflicted people is so important and we are all

gratefull for it because only they can really understand where you are coming

from.... we all have our own set of symptoms etc but the whole rotten deal of it

causes the same fallout for all of us....our stories may differ along the way

but overall they are all one story.

I hope you find some recovery, and I would like to hear what else you do to

maintain and support your body and immune system as I feel strongly that

really helps to keep the lyme from gaining control.... ok off for some sleep,

best to you, c in vt.

[Guest guest]

> I guess one possibility might be that the host might inhibit it's

> own GSH peroxidase in the course of an inflammatory response, in

> order to increase the delivery of reactive intermediates to

> microbes. If so, then the prediction would be that the diminution of

> GSH peroxidase activity would also be found in other infections.

Rich, I'm reading D O'Rourke, Genome Res 16: 1005. It says GST

transcripts are downreg'd in C. elegans during a bacterial infection.

It doesn't seem to specify the fold-downreg - that must be in the

online supporting info/tables somewhere. And this was found by cDNA;

doesn't look like they confimred it with qPCR (which I think is

supposed to be more accurate).

I don't even know, but I assume GST is probably involved in GSH

synthesis(?). And I don't know if C. elegans has an oxidative response

to infection, but I am guessing yes(?). I'd check these things out but

I'm in a huge rush.

[Guest guest]

Thanks Ann,

I just posted a reply to which explains some of my thinking and

really responds to what you have written as well.

Thanks for your response, the support, and sharing your thoughts.

Rich

>

> Dear Rich,

>  

> I don't think that you are making a " huge mistake " as such, BUT I do think

that you are reacting in panic, understandably, to the blood incident.

>  

> I would simply urge you to slow your thoughts down and re-think the situation.

Continue to get the different opinions (great move!), and then see what the

situation is.

>  

> As before, I wish you the best of luck in whatever decision you finally make.

We are all here for you, including those of us who have not had the ectomy.

>  

> As for meeting up, I know that the Richmond crowd are hoping to reschedule a

meeting soon which they had to postpone because of widespread colds and flu. I

hope they will invite you to that one (I am sure they will).

>  

> Love and hope from Ann in England xx

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