Re: New, need advice

July 13, 2003

In a message dated 7/13/2003 4:45:35 PM Eastern Daylight Time, sbm@...

writes:

>

> What state are you in?

>

> [ ] New, need advice

>

> > Hi everyone,

> > I am new at this, so please forgive me if i make mistakes.

> > I was diagnosed with third stage lyme in Oct 2000.

> > The Doctors here know very little if anything at all about it.

> > I was treated for 2 weeks with doxy.

> > Of course I did'nt get well, and relapsed right away.

> > I had to search for a Dr who would treat this, but he also knew little.

> > He did send me to a infectious med Dr. who gave me 4 weeks of doxy.

> followed by 4 weeks of penicillin.

> > I was treated off and on for the following 2 years, but only 2 weeks at a

> time.

> > I have had short periods where I have been fairly well.

> > But, I am now in so much pain I think I will surely die.

> > The big question is, if my blood tests are neg. and ANA levels high, does

> that mean the lyme is gone and it is something else?

> > My Doctor says to forget about lyme its gone, that I have FMS, CFS, and

> arthrtis.

> > I am not convinced. I cannot go to a LMD, there are none anywhere near and

> I could'nt afford it anyway.

> > Does anyone know what other test I should insist on? I just want to be

> sure. Thanks you all in advance for any help........Lost and very

>

Dear Kasey:

If you had Lyme for some time and you have only been on Doxy and penicillin

for a relatively short then you still have Lyme.

I have been on Doxy and Ceftin for over one year and still have Lyme just as

bad as when I first started taking the medicine. The Lyme bacteria become

immune to the medicine and also hide in the cell membrane so the meds cannot

harm

them.

I hope that you will say in which part of the country you are living so

someone on can advice you about a LLMD in you area. LLMD simple stands

for Literate Lyme Medical Doctor. No other type of Doctor is worth your time

unless it is impossible for you to reach a LLMD. Then if your Doctor is willing

to follow directions from a LLMD your Doctor might be of some help.

God bless you and may you find a good Doctor or health practitioner who knows

Lyme. You most definitely have Lyme, it is practically impossible to get rid

of it.

Sidney Gilliam

North Brunswick, NJ

July 13, 2003

What state are you in?

[ ] New, need advice

> Hi everyone,

> I am new at this, so please forgive me if i make mistakes.

> I was diagnosed with third stage lyme in Oct 2000.

> The Doctors here know very little if anything at all about it.

> I was treated for 2 weeks with doxy.

> Of course I did'nt get well, and relapsed right away.

> I had to search for a Dr who would treat this, but he also knew little.

> He did send me to a infectious med Dr. who gave me 4 weeks of doxy.

followed by 4 weeks of penicillin.

> I was treated off and on for the following 2 years, but only 2 weeks at a

time.

> I have had short periods where I have been fairly well.

> But, I am now in so much pain I think I will surely die.

> The big question is, if my blood tests are neg. and ANA levels high, does

that mean the lyme is gone and it is something else?

> My Doctor says to forget about lyme its gone, that I have FMS, CFS, and

arthrtis.

> I am not convinced. I cannot go to a LMD, there are none anywhere near and

I could'nt afford it anyway.

> Does anyone know what other test I should insist on? I just want to be

sure. Thanks you all in advance for any help........Lost and very

confused......Kasey

>

July 14, 2003

> What state are you in?

I am in Kentucky.

>

> [ ] New, need advice

>

> > Hi everyone,

> > I am new at this, so please forgive me if i make mistakes.

> > I was diagnosed with third stage lyme in Oct 2000.

> > The Doctors here know very little if anything at all about it.

> > I was treated for 2 weeks with doxy.

> > Of course I did'nt get well, and relapsed right away.

> > I had to search for a Dr who would treat this, but he also knew little.

> > He did send me to a infectious med Dr. who gave me 4 weeks of doxy.

> followed by 4 weeks of penicillin.

> > I was treated off and on for the following 2 years, but only 2 weeks at a

> time.

> > I have had short periods where I have been fairly well.

> > But, I am now in so much pain I think I will surely die.

> > The big question is, if my blood tests are neg. and ANA levels high, does

> that mean the lyme is gone and it is something else?

> > My Doctor says to forget about lyme its gone, that I have FMS, CFS, and

> arthrtis.

> > I am not convinced. I cannot go to a LMD, there are none anywhere near and

> I could'nt afford it anyway.

> > Does anyone know what other test I should insist on? I just want to be

> sure. Thanks you all in advance for any help........Lost and very

> confused......Kasey

> >

May 3, 2006

Ally, I'm so sorry,

You really do need to get to a doctor who specializes in Lyme, an LLMD

(Lyme-Literate MD). It usually takes months, possibly years of antibiotics to

beat this thing. It's also possible you have co-infections - diseases that are

also transmitted by ticks.

Doxycycline is usually pretty darn effective and has few side effects (aside

from sun-sensitivity, which makes it tough to take in the summer). It isn't

terribly expensive either, and it'll kill erlichia (a possible co-infection),

as well as Lyme, so it's a good way to start. Minocycline is more expensive,

but you can take less, and there isn't the sun-sensitivity issue. There are

many more, as you'll probably find out.

Most doctors are going to treat according to the CDC guidelines, which won't

be enough. The CDC recommends 3 weeks of doxycycline, 200 mg per day, which

isn't a high enough dosage to penetrate the brain and spinal cord, and isn't

taken long enough. An LLMD will give you 400 mg per day, and will usually

continue treatment for 8 weeks after you no longer have symptoms.

http://www.ilads.org/

ILADS is a good place to start reading about Lyme - treatment guidelines,

etc. I don't see a doctor referral page - I know the Lyme foundation has one,

but I haven't used it. Anyone here know of a good referral service?

Good luck with it. If you post your location here, there may be members who

can put you in touch with a good LLMD.

And yes, I do feel well. I'm not done yet. I've only been treated since

October, and have probably had this for decades. But most of the time I feel

good, and I have days where I feel fantastic. I am sleeping well, and not

getting lost.

Take care,

ally_nwm <ally_nwm@...> wrote: I was diagnosed in Oct. of 1999. I was not

told what stage but it most

have been late because I remember having repected, flu like symptoms

for at least 8 years before.

By the time I was diagnosed I could not even remember my name and

would find myself in the car and forget where I was going or how to

get home. I used to sit on the side of the road for what may have been

hours, banging my head against the steering wheel trying to remember.

I would sit in the cold (20 degrees) trying to cool off at night. When

I slept it would only be a few hours and full of nightmares.

I have not been able to feel well since and know I wasn't treated

like I should have been, but I can't get my Dr's, any of them to

listen to me. They tell me because the western and elisa tests are OK

I don't have LD anymore but have FMS and CFS and lupus.

I don't know what to do. I am on disability now and getting very

depressed. My 25 year marriage is gone, so I am alone.

I am blessed that I have a 21 year old daughter who has been with me

all the way, but it seems so unfair to her. Does anyone else have

chronic problems with LD or do you think that the DR is right and the

lyme set off all this other stuff?

Anyone feel well again after Lyme? Thanks, Ally

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

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May 3, 2006

You still have lyme IMHO. Go to a llmd dr to get tx. I completely

understand the marriage thing. They just don't get it, but remember SS

doesn't recognize lyme from what I am told.

Re: [ ] New, need advice

> Gee Ally Your doing ok, your such a kid I was diagnose some 20+ ago and MY

marriage is going down the tube also. well some people just not able to deal

with chronic problems. I am glad that you have your daughter with you and

able to help. the depression is always a problem that I am sure of it just

how you wish to deal with it I my self had get off the drug for the

depression to clear up my thinking.

> If would tell you one thing is the put your self first. in thinking .

Problem will always be there and worst some day then other keep up and get

your self busy. ps. I am a male and Please take care of your self.

Bud Ps. if you need to write please do so

>

> ally_nwm <ally_nwm@...> wrote:

> I was diagnosed in Oct. of 1999. I was not told what stage but it most

> have been late because I remember having repected, flu like symptoms

> for at least 8 years before.

> By the time I was diagnosed I could not even remember my name and

> would find myself in the car and forget where I was going or how to

> get home. I used to sit on the side of the road for what may have been

> hours, banging my head against the steering wheel trying to remember.

> I would sit in the cold (20 degrees) trying to cool off at night. When

> I slept it would only be a few hours and full of nightmares.

> I have not been able to feel well since and know I wasn't treated

> like I should have been, but I can't get my Dr's, any of them to

> listen to me. They tell me because the western and elisa tests are OK

> I don't have LD anymore but have FMS and CFS and lupus.

> I don't know what to do. I am on disability now and getting very

> depressed. My 25 year marriage is gone, so I am alone.

> I am blessed that I have a 21 year old daughter who has been with me

> all the way, but it seems so unfair to her. Does anyone else have

> chronic problems with LD or do you think that the DR is right and the

> lyme set off all this other stuff?

> Anyone feel well again after Lyme? Thanks, Ally

>

> May is Lyme Disease Awareness Month. Encourage awareness by purchasing

the

> book Confronting Lyme Disease: What Patient Stories Teach Us and sharing

it

> with family, friends and acquaintances. Please see

> http://www.confrontinglyme.com/ for more information.

>

May 3, 2006

I'm a kid, cool! Have not been called that in awhile. So 20 years, where are you

from? Here where I am its known that it exists. Most people have no clue. I am

near Ft. Knox in KY. I suppose thats why it took so long to be diagnosed. Of

course we were a career military family and they were at least not known for

their good medicine. I first became ill in about 1985, and have had repeated

problems since getting worse then receding with a 10 day course of antibiotics

the DR said was for sinus infections, etc, etc, but I would always get worse

after a short while. In 99 I was took to a local civilian hospital and there was

a PA who was fron New York and he kept telling the attending DR he beleived I

had Lyme but the Dr said it was not in KY. After hours of tests he finally

agreed to a lyme test and he was prooved wrong, he didn't like that. There are

no llmd's anywhere near here, so I am out of luck there. Thanks Ally

carroll mohrbutter <cmohrbutter@...> wrote: Gee Ally Your doing ok, your

such a kid I was diagnose some 20+ ago and MY marriage is going down the tube

also. well some people just not able to deal with chronic problems. I am glad

that you have your daughter with you

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

goes everywhere you do. Get it on your phone.

May 3, 2006

Thanks I copied it and will take it to my Dr. I have an appointment the 11th.

Ally

Glen Wolfsen <wolfsen@...> wrote: Dear Ally:

There is a more accurate test by Dr. Whitaker in Florida called

the Q-RIBb test. It costs about $250.00 the last time I checked. Look at

http://www.bowen.org/LimeTesting.html for more information on the

t

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Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

May 3, 2006

you need a lyme neuro...do you live near conecticut?

eric

ally_nwm <ally_nwm@...> wrote:

I was diagnosed in Oct. of 1999. I was not told what stage but it most