Introduction - new member

Posted July 19, 2001 · July 19, 2001

Hi Joe and welcome! Unfortunately, I can't respond to your medical question,

but am glad you found us. It may be helpful to visit the archives on the

website if you haven't done that yet. There is a lot of helpful information

there. Keep us up to date on how you are doing.

deano

> From: sierra4733@...

> Reply-

> Date: Wed, 18 Jul 2001 04:27:42 -0000

>

> Subject: [ ] Introduction - New Member

>

> Hi Folks,

>

> My name is Joe Godfrey.

Posted December 7, 2005 · December 7, 2005

I want to reinforce what has written at the end of your original

message - especially that part about getting checked for

co-infections. Your symptoms remind so very much of additional

co-infection involvement as well as the Lyme (especially Babesiosis). I

also thank for giving you such good advice. Glen in NJ.

At 08:36 PM 12/7/2005 +0000, you wrote:

>

> >

> > Hello, All,

> >

> > I have sorta kinda been diagnosed with Lyme. I say sorta kinda

>because so far I've only spoken to my MD by phone, and I have been

>taking doxycycline for about 5 weeks. My guess is that I have

>probably had Lyme for about 4 or 5 years - plenty long enough for the

>arthritis and brain fog to set in.

> >

> > Since using the doxy, I've had maybe a 90% reduction of arthritis

>pain. I am a massage therapist, and the pain in my hands was bad

>enough that 800 mg of ibuprofen made absolutely no difference at all,

>and I had cut back to one or two clients a day. Now I can already do

>2 or 3 sessions a day with almost no pain. And I'm getting stronger.

> >

> > And I can SLEEP!!!!! again!!!!!! I was having this weird hot

>burning cramping sensation in my scalp, always along with a feeling of

>intense anxiety, and immediately followed by a hot flash (so I assumed

>it was just part of the whole menopause thing). The anxiety and

>cramping kept me awake for hours. And if I did happen to fall asleep,

>I'd wake up almost immediately in so much pain I could hardly bear to

>move, usually drenched in sweat. Now I have maybe 2 very mild hot

>flashes a day, as compared with a few every hour for the last 4 years.

> And the cramping/burning/anxiety thing is a small fraction of what it

>was.

> >

> > And I am no longer getting lost. Before doxycycline, I was

>taking wrong exits, and not really having enough ambition to turn

>around. I was sometimes convinced the car was rolling backwards when

>I was stopped at a light, to the point where I would stand on the

>brake with all my strength, almost in a panic. It wasn't the feeling

>you get when cars next to you are moving, and you think you are moving

>in the opposite direction. It's hard to describe - very real and very

>frightening. It appears to be gone. Hope so.

> >

> > The brain fog is lifting, and I'm wondering what comes next. I

>didn't have any bloodwork, mainly because (don't yell at me) I started

>off by treating myself, then fessed up to my doctor. The original

>doxycycline was left over from treating my horse's ulcers, and a

>neighbor (an RN) sorta talked me into trying it. Normally I wouldn't

>take any drug without a Dr's OK. Heck - it is rare for me to accept a

>prescription. At the time though, I didn't really give a darn. Guess

>I was a bit depressed and not quite myself.

> >

> > I started out on just 100 mg a day, following the instructions on

>the label. After 2 weeks (and a little surfing for information) I

>upped it to 200 mg. And BOY, did I feel like crap. The arthritis

>returned with a vengeance, and I couldn't sleep at all. But it

>settled back down within a couple of days.

> >

> > So, I guess I go off the doxycycline in another week, and see what

>happens. I'm not sure how my doc feels about the whole chronic Lyme

>issue, but he is a very bright guy, and he is located in a Lyme

>hot-bed. So we'll see what he suggests. I would love to hear from

>anyone here re: your treatment, so I feel a bit more informed when I

>finally get into my Dr's office.

> >

> > Nice meeting you all! And thanks for the information so far.

> >

> > ---------------------------------

> > Personals

> > Skip the bars and set-ups and start using Personals for free

> >

Posted December 7, 2005 · December 7, 2005

>

> Hello, All,

>

> I have sorta kinda been diagnosed with Lyme. I say sorta kinda

because so far I've only spoken to my MD by phone, and I have been

taking doxycycline for about 5 weeks. My guess is that I have

probably had Lyme for about 4 or 5 years - plenty long enough for the

arthritis and brain fog to set in.

>

> Since using the doxy, I've had maybe a 90% reduction of arthritis

pain. I am a massage therapist, and the pain in my hands was bad

enough that 800 mg of ibuprofen made absolutely no difference at all,

and I had cut back to one or two clients a day. Now I can already do

2 or 3 sessions a day with almost no pain. And I'm getting stronger.

>

> And I can SLEEP!!!!! again!!!!!! I was having this weird hot

burning cramping sensation in my scalp, always along with a feeling of

intense anxiety, and immediately followed by a hot flash (so I assumed

it was just part of the whole menopause thing). The anxiety and

cramping kept me awake for hours. And if I did happen to fall asleep,

I'd wake up almost immediately in so much pain I could hardly bear to

move, usually drenched in sweat. Now I have maybe 2 very mild hot

flashes a day, as compared with a few every hour for the last 4 years.

And the cramping/burning/anxiety thing is a small fraction of what it

was.

>

> And I am no longer getting lost. Before doxycycline, I was

taking wrong exits, and not really having enough ambition to turn

around. I was sometimes convinced the car was rolling backwards when

I was stopped at a light, to the point where I would stand on the

brake with all my strength, almost in a panic. It wasn't the feeling

you get when cars next to you are moving, and you think you are moving

in the opposite direction. It's hard to describe - very real and very

frightening. It appears to be gone. Hope so.

>

> The brain fog is lifting, and I'm wondering what comes next. I

didn't have any bloodwork, mainly because (don't yell at me) I started

off by treating myself, then fessed up to my doctor. The original

doxycycline was left over from treating my horse's ulcers, and a

neighbor (an RN) sorta talked me into trying it. Normally I wouldn't

take any drug without a Dr's OK. Heck - it is rare for me to accept a

prescription. At the time though, I didn't really give a darn. Guess

I was a bit depressed and not quite myself.

>

> I started out on just 100 mg a day, following the instructions on

the label. After 2 weeks (and a little surfing for information) I

upped it to 200 mg. And BOY, did I feel like crap. The arthritis

returned with a vengeance, and I couldn't sleep at all. But it

settled back down within a couple of days.

>

> So, I guess I go off the doxycycline in another week, and see what

happens. I'm not sure how my doc feels about the whole chronic Lyme

issue, but he is a very bright guy, and he is located in a Lyme

hot-bed. So we'll see what he suggests. I would love to hear from

anyone here re: your treatment, so I feel a bit more informed when I

finally get into my Dr's office.

>

> Nice meeting you all! And thanks for the information so far.

>

> ---------------------------------

> Personals

> Skip the bars and set-ups and start using Personals for free

>

Posted December 7, 2005 · December 7, 2005

Hi, ,

I was also on doxy for two weeks a couple years ago, following a tick bite -

one that had been on a while. No symptoms, no rash - just a prophylactic

precaution. I'm assuming I already had it well before then, since the arthritis

that is now gone was pretty much established at the time - just more

intermittent. And I was having some weird balance issues - vertigo?

I was working outside and getting many, many ticks, but at the time I thought

they needed to be attached for 48 hours. So I didn't pay much attention to most

of them. We had horses and dogs who were being treated for tick-related

diseases at the time too - many cases of both Lyme and Erlichia with the horses.

So, my exposure was probably pretty high. And it had an opportunity to become

doxycycline resistant.

Just out of curiosity, if the doctor only put you on doxy for two weeks, where

did you get enough for 5 months? Is it available OTC somewhere? I have

enough left over from my horse to probably last another three months, and I'm in

no hurry to stop taking it. I haven't felt this good in years.

Thanks for the advice.

---------------------------------

Find Great Deals on Gifts at

Posted December 7, 2005 · December 7, 2005

Thanks, Glen,

The thing that gets me is, over all, I'm really healthy. I haven't had so

much as a sniffle in years. And I attributed the arthritis to age and rather

extreme over-use, the forgetfulness and inability to concentrate to age and lack

of sleep, the lack of sleep to menopause, etc. If I hadn't taken the doxy, I

would not have believed I was sick.

Oh - and my eyes were inflamed. I had an eye exam just before going on the

doxy, and the pressures were ridiculously high. I went back two weeks later for

more glaucoma testing, and everything was normal. Go figure. No wonder I was

having so much trouble with SUN this summer.

Take care,

---------------------------------

Personals

Skip the bars and set-ups and start using Personals for free

Posted December 7, 2005 · December 7, 2005

>

> Hi, ,

>

> I was also on doxy for two weeks a couple years ago, following a

tick bite - one that had been on a while. No symptoms, no rash - just

a prophylactic precaution. I'm assuming I already had it well before

then, since the arthritis that is now gone was pretty much established

at the time - just more intermittent. And I was having some weird

balance issues - vertigo?

>

> I was working outside and getting many, many ticks, but at the

time I thought they needed to be attached for 48 hours. So I didn't

pay much attention to most of them. We had horses and dogs who were

being treated for tick-related diseases at the time too - many cases

of both Lyme and Erlichia with the horses.

>

> So, my exposure was probably pretty high. And it had an

opportunity to become doxycycline resistant.

>

> Just out of curiosity, if the doctor only put you on doxy for two

weeks, where did you get enough for 5 months? Is it available OTC

somewhere? I have enough left over from my horse to probably last

another three months, and I'm in no hurry to stop taking it. I

haven't felt this good in years.

>

> Thanks for the advice.

>

> ---------------------------------

>

> Find Great Deals on Gifts at

>

Posted December 7, 2005 · December 7, 2005

Thank you again for the information. It really helps hearing others'

experiences and building information for my eventual Dr. visit. I really like

my doc - I travel nearly 2 hours each way to see him.

I haven't actually talked to him yet - I spoke with his nurse (who was pretty

unhappy I'd taken my horse's doxy). When he called back I was out, and he spoke

with my husband, who wasn't all that able to answer his questions. He did ask

how long I thought I'd had it, which I think is a good sign.

It sounds like quite an interesting little bug. Nasty, but interesting.

So, does anyone know if I would still have a positive western blot after a

round of doxycycline? Titres always confuse me. I've been told a low/no titre

can mean the antibodies are being used up to fight an acute infection, while a

higher titre can mean the infection is under control, or has been cleared. But

with the horses, a positive titre is expected, and we only treat above a certain

level.

I dunno. But I look forward to learning about it. Thanks again,

<betneal@...> wrote:

I Found through my local support group a Dr who was (supposedly) lyme

literate and gave me the prescription for doxy. After I went off it, I

got sick again and called him and he said " I throw up my arms in that

air, I don't know what else to do for you " I found another local Dr

who was willing to give me doxy or any antibiotic combo I had

researched and educated myself about, and he did know some about lyme,

which was great for a while. I was still not feeling better and

continued to search for a lyme literate Dr. I had IV Rocephin for 8

months did HBOT for a month. Nothing worked until I found a LLMD last

Dec, she tested me for co-infections. My tests came back positive by

Igenex. I have babesia which interacts with Bb and can prevent Bb from

being killed off. So I am currently being treated for babesia and than

we will go back and kill the Bb with diflucan and bicillan injections.

---------------------------------

Find Great Deals on Holiday Gifts at

Posted December 7, 2005 · December 7, 2005

> I Found through my local support group a Dr who was (supposedly) lyme

> literate and gave me the prescription for doxy. After I went off it, I

> got sick again and called him and he said " I throw up my arms in that

> air, I don't know what else to do for you " I found another local Dr

> who was willing to give me doxy or any antibiotic combo I had

> researched and educated myself about, and he did know some about lyme,

> which was great for a while. I was still not feeling better and

> continued to search for a lyme literate Dr. I had IV Rocephin for 8

> months did HBOT for a month. Nothing worked until I found a LLMD last

> Dec, she tested me for co-infections. My tests came back positive by

> Igenex. I have babesia which interacts with Bb and can prevent Bb from

> being killed off. So I am currently being treated for babesia and than

> we will go back and kill the Bb with diflucan and bicillan injections.

>

> ---------------------------------

>

> Find Great Deals on Holiday Gifts at

>

Posted December 7, 2008 · December 7, 2008

Hello everyone,

I just joined the group after reading " The Late Talker " book. Our son

Sam has been recently diagnosed with verbal apraxia. He was adopted at

18 months, very malnourished, and his diagnosis of RSS ( Silver

Syndrome) was confirmed once we came home with him. This is a very rare

genetic condition where a child's acid reflux is so strong and painful

that it prevents him from eating, and so these children become very

small and malnourished, their muscles are weak and growth slowed down.

Sam made a lot of progress, he is currently at 50% in height and weight

(at adoption, he was well below the chart area). But he is still speech

delayed. His hearing and vocabulary improved greatly after his

tonsillectomy and ear tubes, but he still does not form sentences. He

is not autistic at all, on the contrary, he is a very communicative guy

and loves attention. He is now 3.5 years old. He does not have any

serious sensory issues now. We thought for a while that his speech

delays were caused by weak mouth muscles, but now I wonder if there's

more to this story.

My question is, how did you establish the nutritional intervention

regimen (fish oils, etc.)? What kind of doctor should we consult? Or

was it just trial and error?

Sorry for the long message, and thank you in advance for your response.

Regards,

Helen

Posted July 4, 2009 · July 4, 2009

Hi ;

First of all...sorry to hear your news. Do you have family or friends for

support as well? Keep researching for yourself and educate yourself as much as

you can about your disease. I wasn't sure what NASH is so I looked it up before

my reply. What were your symptoms that took you to the doctor? What have they

told you to do? Are you on any meds?

I'm 49 and dx 04/09 with Autoimmune Hepatitis and learning to live with it.

Changing my diet completely and finally getting into that exercise routine that

I always knew I needed but never wanted to do. Now I really don't have a

choice.

Hope things go well with your dr visit Monday and they're able to answer your

concerns. Take care!

Robyn

>

> Hello,

>

> My name is and I live in Sumner. I'm 38 and was just diagnosed with

NASH by my general practitioner and am seeing a GI specialist on Monday. In

addition, I am borderline diabetic (possibly related to the NASH?) and have a

thyroid problem. I've been working from home for 3 weeks due to my symptoms and

so far my employer has been very understanding. I joined this group for support

and information from real people - not just medical jargan I found on Google.

I'm feeling very unsure, frightened, and isolated. My doctor has prescribed an

anti-depressant but I know that's not enough. I need people. Thank you for

allowing me to be a part of this group and I look forward to getting to know you

and your life stories.

>

> Best,

>

Posted July 4, 2009 · July 4, 2009

Thanks for the warm welcome Tina and to those of you who have written me outside

the group. I did leave out one thing in my intro - Sumner, Washington is where

I live. LOL I forgot I'm not just dealing with locals. Looking forward to

getting to know everyone.

From: <healthymomathome>

Subject: [LiverSupport- L] Introduction - New Member

LiverSupport- Lgroups (DOT) com

Date: Saturday, July 4, 2009, 6:14 PM

Hello,

My name is and I live in Sumner. I'm 38 and was just diagnosed with NASH

by my general practitioner and am seeing a GI specialist on Monday. In addition,

I am borderline diabetic (possibly related to the NASH?) and have a thyroid

problem. I've been working from home for 3 weeks due to my symptoms and so far

my employer has been very understanding. I joined this group for support and

information from real people - not just medical jargan I found on Google. I'm

feeling very unsure, frightened, and isolated. My doctor has prescribed an

anti-depressant but I know that's not enough. I need people. Thank you for

allowing me to be a part of this group and I look forward to getting to know you

and your life stories.

Best,

Posted July 4, 2009 · July 4, 2009

Hi Robyn,

Thank you for the welcome and for sharing. I am married - although my husband

and I have been separated for over a year now. We were trying to work things

out through counseling and such and then this hit. I guess it will be kind of a

test as to whether he will be able to handle this journey with me - or not. I

have 2 teenage sons that live with me (not my husband's kids), they are 17 and

15. My husband lives less than 5 minutes away and my mom and 2 of my brothers

live close by. My father died of alcohol related cirrohsis of the liver so this

whole thing is very scary to them. Just from the research I've done so far, I

believe I may already be in the cirrohsis stage - but will wait to see what the

GI doc says on Monday. My symptoms that finally got me to see a doctor was

extreme edema (swelling) in my legs and feet - to the point where they were

turning black and blue and tingling and I could not even wear sandals on my feet

- I've

gained 100 pounds in a year even though I worked 2 jobs most of that time and

eat maybe one meal a day. Also, I feel so tired all the time and feel like I

have the flu every day. So I finally went in and had all these tests run - the

abdominal ultrasound was the final one and the results according to my GP was a

fatty liver or NASH - she does not feel it's alcohol related as my liver enzymes

in my blood work were normal. (I still don't know what all of that means)

Right now she has me taking a double dose of a diuretic to treat the swelling

and potassium along with that. My thyroid is off so I am taking something for

that. She's also prescribed me an anti-depressant. I've stayed off my feet for

3 weeks and have worked from home - resting as much as possible and going in for

all of these doctors appointments and tests. I just feel like such a mess and

there is so much that I don't know about all of this. My co-workers have

commented on

my strength - whew... I'm not feeling very strong or courageous these days -

and yet my journey as just begun.

Best,

From: robynbottens <robyn@...>

Subject: [ ] Re: Introduction - New Member

Date: Saturday, July 4, 2009, 3:30 PM

Hi ;

First of all...sorry to hear your news. Do you have family or friends for

support as well? Keep researching for yourself and educate yourself as much as

you can about your disease. I wasn't sure what NASH is so I looked it up before

my reply. What were your symptoms that took you to the doctor? What have they

told you to do? Are you on any meds?

I'm 49 and dx 04/09 with Autoimmune Hepatitis and learning to live with it.

Changing my diet completely and finally getting into that exercise routine that

I always knew I needed but never wanted to do. Now I really don't have a choice.

Hope things go well with your dr visit Monday and they're able to answer your

concerns. Take care!

Robyn

>

> Hello,

>

> My name is and I live in Sumner. I'm 38 and was just diagnosed with NASH