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01/27/2013 05:53 AM

IgG vs IgM? Symptoms? The wait for an LLMD?

mcdonalm
 
Posts: 51
Member

Twice reactive to 23kd IgM band from Labcorp Western Blots three weeks apart. No other bands so not CDC positive, although I have learned this is a lyme specific band.

Reactive high IgG to Babesia, negative IgM. All bloodwork looks normal. No high inflammation or white cells.

While on antibioitcs for what my doc thought was a sinus infection I started having horrible neuro symtoms.

Tremors, feel like vibrating between shoulder blades in spine/head/neck and almost electric shock like sensations down my spine.

Thought I was having seizures. Only at night while trying to sleep did this happen. Also had muscle twitches and migrating joint and muscle pain.Pins and needles.

Off antibiotics five days. Vibrating reduced. Electric shocks gone and can finally sleep at night. Also, appetite is back. Have lost 10 pounds in a month because I just didn't want to eat...odd for me!

Now I am left with significant back pain, pins and needles, muscle twitches, eye and facial twitches. My body feels SO STRANGE, although I can function now. Medium fatigue.

Neuro wants to do MRI and EMG soon. Then maybe spinal tap. Not sure about all this.

I feel like you guys are the experts, so i have a few questions. Your replies would be greatly appreciated!

1.) Should I do the Igenex Western Blot myself? How long should I be off antibiotics? First Western blot I was off for 4 days. Second I was still on antibiotics.

2.) Does the IgG for babesia and no IgM mean old infection? Confused on that. Could my immune system have handled that and not lyme?

3.) Anyone get those not-so-good vibrations and electrical shock symptoms? Scary!!

4.) I am assuming all the crazy intensified symtoms were from a herx since they have calmed after stopping antibiotics. Sound right?

5.) How long do you wait for an LLMD? I contacted one a week ago and faxed information but have not heard anything back. Should I contact them and see if they are too busy, and if so, if they can refer me to someone else?

I never realized anything was this wrong with me until Augmentin for that "sinus infection". Feel like we awoke a 'sleeping giant.' Would lovew to put it back to bed.

Thanks for your input!

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01/27/2013 06:09 AM
doglick
doglickPosts: 682
Member

Negative blood tests are common with active infectsions. Especially a new or very old infection. Labcorp often only shows band 23. Not know why.

Igenex is the recognized world experts on Tick born diseases. Get test done there at least. Other places cannot hurt if you can afford it.

Symptoms are a very good indication of a problem. Antibiotics only cause symptoms when an infection is present. The trick is determining what the infection is. (often this is never known and only suspected.)

One needs a doctor to order the lab tests. You will probably have to wait on the LLMD for such unless you can convince your regular doc to do it.


01/27/2013 06:53 AM
mcdonalm
 
Posts: 51
Member

Thanks doglick.

I think the infectious disease doc I saw would sign off on it. The nurse said they just don't use them because they are so expensive and most insurance companies don't cover it.

At this point a diagnosis would set me at ease a little, and would also help me apply for medical leave for work for the days that are not so good. Due to all these doctor visits and feeling so poorly, I am now out of sick days and will start being docked pay for days I miss.

Paying for the test may be worth in in the long run. I believe this IS lyme. Too much of a coincidence how things appeared or lessened in presence or absence of antibiotics.

And my husband had it a few years ago. He got the bullseye rash, so it was pretty clear he had it, and he got treated promptly. We are in an endemic are and live on a farm, so we spend a lot of time outdoors.


01/27/2013 07:36 AM
doglick
doglickPosts: 682
Member

If one lives in an endemic area, the likelyhood that they do not contract the disease during their lifetimes if so small as to guarentee infection at some point. The statastics are that bad.

In my case, I live in a bad endemic areas. Livelong being around dogs and cats in the home. I've pulled so many deer ticks of myself let alone the dogs that I can't number. In this area, the local testing labs find the infected tick rate at around 43%. With those numbers, a 5 years old is guarenteed to be infected let alone an adult.

Good luck


01/27/2013 07:55 AM
pampe
pampe  
Posts: 2358
Group Leader

A LLMD would probably diagnose you on the information you posted.

ID doctors are notoriously bad treating Lyme and Co-infctions.

You neuro symptoms may very well have been a herx.

Get to a LLMD ASAP


01/27/2013 08:33 AM
mcdonalm
 
Posts: 51
Member

Thanks Pam. I hope the LLMD calls me, and soon! Want to start the correct treatment soon!

And doglick, I hear you! After coming out of the hay fields now my husband strips down to his boxers and we go over him looking for ticks. Some of the deer ticks are so tiny. If one of those was in my long, thick, hair, I would not stand a chance of finding it.

And a few weeks after my husband was diagnosed, our son (who was 4 at the time) got a strange red circular rash on his knee. Our pediatrician didn't even test him because he said there are too many false negatives early on. He said the spot was too suspicious NOT to treat him for lyme right away.

Our son has been fine since. So fortunate for that pediatrician!

Wish my doc had a more open mind. He said I didn't have the rash or a swollen joint, so I could not have lyme. Geesh!


01/28/2013 01:04 AM
Bettyg
 
Posts: 32239
VIP Member
I'm an Advocate

WELCOME,

you've been given bad advise all the way ...RUNAROUND!

PLEASE go to my BEGINNER LINKS in my signature line; copy/paste to white address line.

print off 37 PAGES DR. BURRASCANO'S LYME TREATMENT GUIDELINES;

1ST LLMD PREPARING FOR VISIT,

read thoroughtly DR. C'S WESTERN BLOT EXPLANATION over and over; it's very technical! it will tell you the answers you want to know ok.

get away from the infectious, idsa dr.

please send me a PRIVATE MESSAGE, PMS are below our names of left side.

send me privates full name, city/state of llmd? YOU went to.

let me check my nationwide/intl. list to see if they are on it or not; i don't have ALL but a good majority.

post here for llmd ok.

*******************

welcome, we need you to post here in llmd request forum and answer ALL QUESIONS ASKED HERE.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/3866722-instructions-for-lyme-literate-doc- llmd-requests

please use these posting instructions so i can read it all; i'm 43 yrs. neuro lyme; thanks Wink

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/10012830-get-more-responses-posting- suggestions?mosmsg=Message+stored+in+archive

thanks for helping us to help you.

bettyg, iowa

LLMD COORDINATOR


01/28/2013 05:37 AM
mcdonalm
 
Posts: 51
Member

Thanks Bettyg. Getting ready to pm you now.
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