LymeNet Flash: New Lymie

This is topic New Lymie in forum General Support at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/3/12263

Posted by Bacteria Bess (Member # 5923) on :

Hello Everyone,
Yea! I figured out how to post, there is was right in front of me all the time. I used to be
a pretty sharp cookie. I would like you all to
know how helpful this website has been to me. I
have been fighting lyme and co-infections (bart & babs) now for about a year and 8 months. I live in the southwest lower corner of Michigan,
Berrien County. My story is a long one, so much
like everyone here, countless Dr. visits, and
test, ( I had the bullseye rash and a multitude of symptoms) I even had one Doc. tell me I had lyme but would not treat me until my Elsa came back positive!!! Anyway I
am now driving about 500 miles round trip to
a LLMD in upper MI., been going to Dr. L. for
about 16 months. I am now taking amoxicillin
4000 mg. a day and 500 mg. of bioxin, I have
been taking this since 3-7-05 and feel like I
am in a herx nightmare. I was trying to keep
this short but I do not know anyone in my area
with lyme (I guess thats a good thing, I would
not wish this on anyone). Again thanks for all
the good info.

Posted by NP40 (Member # 6711) on :

Hi Bess,

Probably don't know a lot of lymies because Doc's in Michigan are clueless about this disease, so no one gets diagnosed.

However, I'm sure due to the fact that MI., is a huge forested state, with a cool, damp climate, you guys have a rash of fibro-myalgia, lupus, MS, and other "mysterious" maladies.

Our LLMD is up in northern WI., not far from the U.P. I wasn't aware of any doc's knowledgeable about lyme in the U.P. Why ? I have no idea ! The U.P. is infested with ticks, as it's basically one huge forest, bathed in humid, cool air from Lake Superior.

Here's a link to some folks from MI that may know something about lyme:
http://www.lymenet.org/SupportGroups/UnitedStates/Michigan/

Posted by Lymetoo (Member # 743) on :

Hey Bess! Welcome! We're glad to have you! Glad you figured out how to post! Now you can join in the fun! [fun??]

Here are some links for you. Maybe you've already read them all.

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ilads.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html

------------------
oops!
Lymetutu

Posted by Bacteria Bess (Member # 5923) on :

Thanks NP40 and Lymetoo, some of these websites
Ihave been to and some not, I feel that we need
to educate ourselves as much as we can. NP40
you are so correct about our states, go to the
cdc map and where I live is the second highest
for lyme. I know I got bit in my grandparents
woods, three days later I noticed a red bump above my navel that turned into the expanding rash, all down hill from there. You know what
burns me, all summer long I read and heard on the news about West Nile but not one thing about Lyme. Again Thanks! Have a great weekend.

Bess

Posted by bg (Member # 46416) on :

Bess, welcome, and I too could not find HOW to post...just didn't see the black & white area.

Speaking of white area, could you edit your post and break up your long pargraph to 6-8 lines. For us late stage lymies, we just can't comprehend that much. We don't want to miss reading anything...thanks for understanding.

Welcome to this 24/7 support group board!

Here's TREEPATROL's and tincup's combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this.

print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 2 USA's Lyme testing labs:

IGENEX LAB:
797 San Antonio Road
Palo Alto, CA 94303
1.800.832.3200.

(If the early test, called IGM, is negative; the later test IGG is NOT done!)
Please see their web site: www.igenex.com for their current prices and

to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your FROZEN blood taken EARLY in the week so it doesn't sit in post offices!

Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!

NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.
Medicare patients do NOT have to prepay!

OTHER LAB: MDL from NJ, www.mdl.net
see their site; they too require their own form. NO prices are listed; you must call their 800 no.

Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.

NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).

FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!

Betty G, Iowa

Posted by MADDOG (Member # 18) on :

HI, Welcome BB hope we will be of great help to you!! MADDOG