Re: Negative on Western Blot

[Guest guest]

In a message dated 12/11/1999 5:40:29 AM Eastern Standard Time,

bornfree@... writes:

<< I have also had temperature spikes and extreme chills, AGAIN. Makes me

want

to scream.

>>

, please have them check you for Babesia Microti and Ehrlichia. Two

other tickborne diseases. They are KNOWN for these chills and sweats. Since

you are in CA there is a great lab called IGENIX in Pao Alto. Also western

blots are not always accurate. Many false negatives. You might want to try

a LUAT. Lyme Urine Antigen Test. You collect your urine at home first thing

in the morning on three separate occasions after highly symptomatic days.

When we are not feeling well the spirochete are active and in your urine as

well. Rib pain and chills and stabbing pains and muscle spasms were some of

my worst symptoms along with nausea and vertigo, crushing headaches and

occasional joint pain. I still get them all but not to the severity that they

were and they seem to be fading slowly. After 6 months of oral treatment for

Lyme, I was only about 50% better if that and then I took a backward slide

this summer. I knew something was really wrong that we were not catching. My

doctor (and boss) agreed to test me for the other tick diseases and were we

surprised when they were both positive! Now many of our chronic patients are

being tested and finding the same thing. It's unbelievable, but one tick can

transmit these in a single bite along with Lyme. I hope that you will all

consider having these tests done. Co-infection is one of the main reasons we

do not really improve or get better with Lyme Disease. With the right

treatments however (Mepron for Babesia combined with another antibiotic) and

Tetracycline based drugs for Ehrlichiosis, we can knock those out and get on

the road to recovery with our LD. Don't give up on this . It sounds

like you do have a tickborne disease. Remember, Lyme is the new great

" Imitator " as Syphillis was once called. It messes with every body system

and organ if left untreated. My wish is that everyone can catch this disease

early on and stop its progression.

I hope this will help someone out there. Love you all.

Blessings,

Lorraine

[Guest guest]

rosia......how did ur doc come upwth the no lyme dx????? bloodwork? maybe u

should find a doc who will give u what a dx.....cliacally like lyme is

suppose to be dx'ed........good luck at least he is treating ur symptoms....

Reid

[Guest guest]

> From: Cheers4U@...

>

> In a message dated 12/11/1999 5:40:29 AM Eastern Standard Time,

> bornfree@... writes:

>

> << I have also had temperature spikes and extreme chills, AGAIN. Makes me

> want

> to scream.

> >>

>

> , please have them check you for Babesia Microti and Ehrlichia. Two

> other tickborne diseases. They are KNOWN for these chills and sweats.

....

> Don't give up on this . It sounds

> like you do have a tickborne disease. Remember, Lyme is the new great

> " Imitator " as Syphillis was once called. It messes with every body system

> and organ if left untreated. My wish is that everyone can catch this disease

> early on and stop its progression.

>

> I hope this will help someone out there. Love you all.

>

> Blessings,

> Lorraine

Hi Lorraine,

Thank you for your encouragement. I sure do need it. The only saving grace

is my PCP does believe my pain is real. She is willing to try whatever pain

meds will help. She was disappointed in my body's reaction to Elavil. But

when I asked for more Xanax she had no problem giving me more. There was no

hesitation on her part.

After reading the symptoms from European sufferers of Lyme Disease I am

beginning to believe the strains in CA State just might be similar. I have

more of European variety of Lyme rather than an East Coast variety.

--

Kiana

bornfree@...

Pacific Northwest

[Guest guest]

Thank you for the encouraging words. I sure do need it.

I am hoping my ID MD will continue to find the cause of my symptoms. My PCP

doesn't want to treat or diagnose my symptoms/disease.

Kiana

> From: " Girard " <ranlin@...>

>

> Kiana,

> I feel so bad for you. I know how those chills and sweats are. I get

> them so bad, that I have to do many things in steps. For instance..wash

> hair...sit..dry hair....sit...fold clothes...sit.....No matter what I am

> doing, I have o stop in between. The chills will start and I will feel

> cold....Yet the water will be running right off me...It is terrible...Don't

> give up on the Lyme diagnosis or even the possibility of being

> co-infected... It reall makes no sense to me at all, that the bottom of

> these lyme tests it states: Lyme should be a clinical diagnosis and yet so

> much emphasis is put on these tests!!! Hang in thereKiana!

> [ ] Negative on Western Blot

[Guest guest]

Kiana,

I feel so bad for you. I know how those chills and sweats are. I get

them so bad, that I have to do many things in steps. For instance..wash

hair...sit..dry hair....sit...fold clothes...sit.....No matter what I am

doing, I have o stop in between. The chills will start and I will feel

cold....Yet the water will be running right off me...It is terrible...Don't

give up on the Lyme diagnosis or even the possibility of being

co-infected... It reall makes no sense to me at all, that the bottom of

these lyme tests it states: Lyme should be a clinical diagnosis and yet so

much emphasis is put on these tests!!! Hang in thereKiana!

[Lyme-aid] Negative on Western Blot

>From: " Kiana Rossi " <bornfree@...>

>

>Well folks it is official according to my PCP that I don't have LYME. So

is

>that why I feel so horrible this menstrual cycle. The worst ever! I have

>taken so much Codeine and Xanax, I feel like a zombie.

>

>The only good news in all this is I got my very own computer for Christmas.

>Mine and mine alone! I also put my own phone line in and have my own email

>account. I got it on Wednesday but was so ill I couldn't even really use

>it. I was just too sick to sit up at my desk with the computer.

>

>My PCP thought my symptoms were like that of PMR -- Poly Myalgia

>Rheumaticans. So she was ready to use that as a diagnosis except she

>couldn't get the symptoms to fit in.

>

>My husband's aunt has it. I spoke with her tonight and she doesn't have my

>symptoms either. But she says some of my new symptoms sound more like

>pericarditis than anything else.

>

>The newest symptoms began the day before my menstrual cycle:

> Shoulder blade pain across the entire back, stabbing like

> Rib pain all around

> Sternum pain from top to bottom

>

> And the worst my legs feel like rubber. Absolutely no energy in

>them whatsoever. I just felt week. I spent all of yesterday in bed and a

>good portion of today.

>

>I have also had temperature spikes and extreme chills, AGAIN. Makes me

want

>to scream.

>

>I will return to the same doctor I saw at a clinic to see where he wants to

>go now with this negative test.

>

>This is VERY frustrating to say the least. The only saving grace -- my PCP

>does believe me when I say I have horrible pain. I told her that Xanax

>really helps. So she gave a larger subscription with refills. And she

gave

>me more Luvox refills. 50 mg seems to do the trick right now. Though now

I

>am going to have to call her and say I need for Tylenol with Codeine for

the

>period pain. It was horrendous this time.

>

>Sorry to be so long winded ... feels like I should be singing the theme

song

>from The Good, The Bad and The Ugly ... sure feels like it!

>

>--

>Kiana

>bornfree@...

>Pacific Northwest

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

[Guest guest]

> From: " C.Tab. " <tab@...>

>

> Hi Nelly,

>

> Are you being tested for other strains of Bb? I only had the LUAT - what

> others are you having done?

>

> Thanks,

>

> Christie

Hi Christie,

How does one get tested for other strains of Bb?

And does anyone know if the lab in Utah is a viable one for testing Bb?

Thanks.

--

Kiana

bornfree@...

Pacific Northwest

[Guest guest]

In a message dated 12/13/99 10:23:16 PM, tab@... writes:

<< Hi Nelly,

Are you being tested for other strains of Bb? I only had the LUAT - what

others are you having done?

Thanks,

Christie

>>

What is the LUAT?? I don't think i've had this. What does it check for?

Thanks,

Damien

[Guest guest]

In a message dated 99-12-13 23:01:10 EST, you write:

<< And does anyone know if the lab in Utah is a viable one for testing Bb?

Thanks.

--

Kiana

bornfree@...

Pacific Northwest >>

Hi ,

I've heard the best 2 labs are Igenix & a lab in Boston - had the Boston info

& can't find it. Perhaps someone else on the list can provide website and/or

phone number?

Hope this helps,

Chris

[Guest guest]

In a message dated 12/14/1999 1:15:17 AM Eastern Standard Time,

DobeLovr1@... writes:

<< I've heard the best 2 labs are Igenix & a lab in Boston - had the Boston

info

& can't find it. Perhaps someone else on the list can provide website

and/or

phone number? >>

Here is the Igenix website with lots of great info, but I don't have or even

know about the Boston lab. If anyone does, please pass it on. <A

HREF= " http://www.igenex.com/ " >IGeneX, Inc.</A>

Bless you All during these busy holiday times. I know I am worn out already

trying to keep up with it all.

Love & Angels,

Lor

[Guest guest]

From: " Kay " <b10g7@...>

hi,

BBI, IGENEX and STONY BROOK.

the politics at stonybrook are way in the opposite from reality, however i

have had 2 prominent llmd's tell me their lab is the best for western blot.

http://www.igenex.com/index.shtml

When sending any kind of testing to Igenex or BBI it is important to make

> sure you send samples via FedEx NO LATER THAN WEDNESDAY, even earlier is

> better. Collect samples over the weekend with the third sample taken on

> Monday. If FedExed on the last day of collection, the last sample will

> not have to be frozen. Anything FedExed later will sit on the doorstep

> through the weekend and the samples will be ruined.

http://www.bbii.com/

http://sbchem.sunysb.edu/msl/homepage.html

>>>Hi ,

I've heard the best 2 labs are Igenix & a lab in Boston - had the Boston

info

& can't find it. Perhaps someone else on the list can provide website

and/or

phone number?

Hope this helps,

Chris<<<