most of you know my story ....western blot when i was 17 know 29........took abx for 3 weeks thought i was clear now 12 years later i've had problems in last 5 years with
mitral valve, heart palps , memory loss, nerves are real bad, irregular periods,broken ankle i have no idea how i done

sleeping problems , losing breath in my sleep,severe depression, arthritis, knots in my shoulders, can't gain weight, and have 3 kids and weigh 110 and eat like a hog

many others things these are the main ones , still negative tests since the one i had in 93 so do i have lyme or not , i understand the whole they lyme hides deal but my family doesn't and my mom says if its red its red if it isn't than it isn't

i can't have surgery on my ankles till my lyme is gone accourding to my othropedic doctor.......i am crying my self senseless........trying to continue to work as barmaid and 3 kids and husband ..........

i hurt so bad and memory and nerves are terrible .....don't think i can get disability cause of my age and no test proving i have lyme other than the one years ago.........my lyme doctor is treating me with 3000mg amox a day, which i quit cause they make me feel horrible and i have to take care of babies and work ........

what do i do....i'm so frustrated and everyone yelling at me that much abx is killing you......i currently see a pain management doctor, therapist, counsler, orthropedic doctor , chiropractor, massage therapist, and lyme doctor plus cardiolists..........people i am 29 years old....i don't want my children seeing me sick all the time, they need me so much and i them.........

I have a couple of questions.

Are you only on one ABX?
Most LLMD's usin 2 or more drugs at once.

Whereis your testing being done? If it is at Labcorp or Quest you may never get anything but a negative.

Even with labs suchas Igenex do not always detect lyme. Lyme is a clinical diagnosis. You should not rule out lyme on a negative blood test.

You really have got to get to a good LLMD. They will be able to help you.

email me if you want more info,

robi

You should check with a lawyer that handles disability. They will take your case and you only pay if they win. Then it is a percentage of your disability award. You should have everything documented that has been done to you since you were diagnosed with Lyme.

I don't know in what part of Illinois Elizabethtown is. Perhaps you could get to see another Lyme disease doctor for a second opinion. As for testing, a western blot might be your best bet at this point. A spinal tap isn't a good test for Lyme.

If you go to Support Groups onthe menu to your left on this page, you can get to Illinois and contact some people who might be able to help.

Sending all good thoughts and wishes.
Ann - OH

to make URL's shorter:
tiny URL http://tinyurl.com/create.php

Can you print off info from this site to give to your family? Someone in your family needs to be on your side so you can get well.

Do you know which lab did your Lyme test? Do you know which test they did?

We need to get you some major help....help us with some answers here. Thanks! Hang in there!

I am the same age as you.

Luckily I do not have to work. Things are tight but it's not worth it to me to go back considering that there'd be just too much stuff to deal with (stress, finding daycare, dropping/picking up our child, finding time to make dinner, staying home when our child is ill, etc).

And this is IF I could keep the job - there are some days that taking a shower tires me out for the rest of the day and days where I know I can't drive because I didn't get enough sleep, etc...

My symptoms are not as bad as yours but I have the memory problems, visual problems sleeping problems and pain problems.

I do wish gaining weight was a problem - I am the opposite. I need to lose ALOT of weight yet I can't seem too - even though I barely eat.

I have yet to test positive...I'm the same way - I want/need to believe it's Lyme but what if it isn't? What if they missed something? What if it ends up being too late when they finally figure it out? Who will take care of my baby if something happens to me? It's too scary and depressing to think about.

My child is still a toddler and I can't help but think occasionally that if something were to happen to me, he wouldn't remember me.

I think it's harder for mothers with Lyme. And godforbid if my son has it, which he might, as I had him w/out knowing I had Lyme.

I also don't want to have my child growing up with a 'sick' mom.

Email me if you want to talk.

Please hang in there. I know some times you dont want to and some times it seems you just physically wont, but you are SO not alone.

I myself am 28 with 5 kids of my own and have all the symptoms you do.

I also test negative for lyme. For me I have found that a large part of my problem was actually systemic candida whic carries all the same symptoms as Lyme.

I never had the vag. yeast, but finally this year it made its way to my mouth and I finally realized why pizza and ice cream made me feel immediately so sick.

Now sugars are bad for lyme to so LOW Carb is good to go either way you look at it. Its a crazy road we walk.

Do we have lyme? Do we have systemic candida? Do we have both? And how many other critters are hidding in there causing there own torment?

My best advice is to hit this at all angles and which ever path works best to eleviate your pain and the hell I KNOW your going through... take that path.

And know we are always here to listen, support and truely truely understand your pain.

Take Good Care Of You,
BB

You need to have a sleep test--you may need a C-pap machine.

You also need to get your thyroid looked at. Three tests:

T3,
T4, and
TSH

MAKE them give you all three test.

Not a lot of people do this but my husband and I use the pulse method of taking abx--we take a abx every 28 days. We do this for the exact same reasons you listed, kids, jobs and mortgages.

God bless you--you are in my prayers,
L

quote:

---

Originally posted by robi:
Amy,

I have a couple of questions.

but a nAre you only on one ABX?
Most LLMD's usin 2 or more drugs at once.

Whereis your testing being done? If it is at Labcorp or Quest you may never get anything egative.

Even with labs suchas Igenex do not always detect lyme. Lyme is a clinical diagnosis. You should not rule out lyme on a negative blood test.

You really have got to get to a good LLMD. They will be able to help you.

email me if you want more info,

robi

---

i've cut myself down to 1000 a day

i'm not sure where my doctor sent my lab

but my positive back in 93 was a lab in kentucky........and my lld is good

i'm just frustrated with the fact that i drive 2 hours to see him and everytime he tells me do the same thing for 2 more months with amox.

and its not getting better but if i'v e had lyme for 12 years and was only on abx 3 weeks at first and now been on abx 6 months and still no improvement than doesn't something else need to be done

jill........i would love if you would email me and us keep in touch because we are the same age and kids and trying to cope with this.......we can help eachother with someone to talk and understands me

you all are great and with out you i'd done been in a mental hospital somewhere with straight jacket for sure.....so thank you.

i did start on zanax and lexapro today and i feel real good so far no irratablity toward children and they need me to be patient and do thing s with them .......i don't want them to suffer cause i feel bad

i have so much guilt because of my not wanting to do things i would normally do with my kids........i just haven't had the energy nor the patience........

thank all of you so much......you give me hope to keeep strong...and it means alot

god bless and i pray each nite for all of us suffering with illnesses and diseases

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 effective May 1, 2005 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!

I came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...Alzheimer's/dementia, Parkinson's, Bell's Palsy, MS, FMS, CFS, IBS, etc. and was posted on www.lymenet.org.

300 OTHER medical condtions mimicking lyme disease w/citations and author's
name, Art Dougherty, Calif., 2001, is at bottom of site page! http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html

Hope you each find some good info there. Saw it's from Art Dougherty, Calif. in 2001. http://www.geocities.com/lymeart3/misdiag-links.html#disease

Also, see Cheryl's www.lymeinfo.net's extensive web sites on LD Diagnosis, Symptoms, and Treatment:
http://www.lymeinfo.net/lymediseasetreatment.html

You can WIN without a lawyer but will take a great deal of work from you, family members, & friends to gather everything you need together to do this.

I've been in the SS disability process 5 yrs. 8-05; having my 2nd ad min law judge hearing 6-16-05. I did NOT know about this site until last fall.
_________________________________________

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BETTY NOTE: Look for the female MD's DETAILED BACKGROUND in the links. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!

These links are a compilation of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information
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Take a look at Files that are not specific to
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Optimistick, what is your background? do/did you work for SS Disabilty?

Amy, when using the quote feature, please turn OFF the bold by just DELETING the [B]at the beginning of the quote and end of quote. For us late stage lymies, it is extremely difficult to read BOLD in long pargraphs. Thanks for helping us help you out. Also, you can EDIT text anytime; you just can NOT edit the TOPIC line. So it's important to be specific there so you get more replies since there are 40-50 posts/relies daily & each of us with limited time here....thanks a bunch!

Amy, I'm so sorry to read of your situation of being so young, sick, and the mom of 3!

Why? That seems way too lowQUOTE]

quote:

---

Originally posted by Lymetoo:
Hey Amy....would you please post your test results here? Thanks!!

---

i go to dr. m wednesday.......

yea i've been hurting real bad in my neck and shoulder....... and a little brain foggy..

i was going to answer janets question....

Until you have time to learn the ropes, just click on "Post Reply"

i too am a mom with lyme. and now heartbroken.

if you are too sick to work, don't. it will stress your body too much. try also to get someone to help with the kiddies.

i got very sick at age 31 with a 9 mos old baby. reinfected before pregnant with son. wanted to have a 3rd child , but too sick. have since found out my kids have lyme also. please consider that you may have had this longer than you think, and that you children may have it.

it sounds as if you are undertreated. and some abx work better than others - what strain you have, genetics, - oh, and important! coinfections. i noticed a major difference after treatment for babesia. and the sicker you are, the more likely the initial neg lyme tests, i think. i was neg by the tests UPENN did, though no question gravely ill with lyme/babs, but they insisted no neuro problems.

now in addition to pos pcr of my spinal fluid from a lab that no one seemed to be getting pos pcr's., i have pos pcr's even from quest while on abx. and even after a neg babesia pcr from a good lab, later got a robustly pos Igg/Igm western blot from the same lab when the introduced that test.