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Posted 9/10/2010 9:42 AM (GMT 0)
Hi Everyone,

New here and looking for support and wisdom.
Excuse the length of this post, and thank you for ur interest.

I am 40 years old and stay at home mom of 3 kids ages 9,14 and 16.
I've lived in high infectious area's such as Virginia Beach and Groton CT. Now living in the Tampa Florida area.

My symptoms started in 2003-2004 with fatigue and gait issues. Then the tremors in my hands (more predominant left hand) and stiffness and rigidity and stiffness. Balance problems too. I've had all these main symptoms since 2004.

I have an autoimmune disorder when I am sick my white blood cells will not elevate. When I was eight I had my right kidney removed because it was blocked and infected and not working. It had swelled up triple its size and was hours from bursting when removed. Never once did my white blood cells elevate during prior to my kidney removal. My mom was persistent tho, she knew I was sick. A doctor found my kidney thru xray and feeling around from the outside that I had issues.

I am on my 5th neurologist now including a movement disorder specialist. They have thought I have had MS and Parkinson's Disease. My MRI's all come out normal tho. And my blood work too. Have been screened for LD in the past and came out negative. They are hesitant to diagnosis me with Parkinson's because my symptoms are very "atypical" Parkinson and more psychogenic in nature. They will not even consider LD.

I recently went to a Neuro-Sensory Doctor in TX last month. Who thinks outside of the box and has a way of measuring dopamine levels thru tests he has developed. Surprise, my dopamine levels are low. But he ran some unique blood tests which included the LD test once again.

We have always suspected LD. But my tests for it in the past have been negative. I recently read because of auto-immune disorder the antibodies used to detect LD are not there, thus you will have negative test results.
Especially for the western blot.

Here are my recent lab results.

Vit D levels are abnormally low
DNAase B antibody is abnormally high
Mycolplasma IgG is abnormally high
Candida IgG is abnormally high
Candida IgM(acute infectious) is abnormally high
Candida IgA is abnormally high

*Noted in the infectious titers is the mildly elevated
Lyme's titer (equivocal).

Then my westren blot was normal

I was put on 100mgs of doxcycline to cover the Lyme's
and Mycoplasma and strep.

I am also taking sinemet that helps with the
stiffness and rigidity some, and eases the tremors.
I have been told they think this is some sort of Placebo
effect but we will prescribe it to you anyway's.(insert big sigh)

What do you all think about the mildly elevated
Lyme titer? Guess that was the ELISA that was elevated.

What tests should I be asking to help diagnose my problems
with autoimmune disorder.

Its miserable not to know, not knowing for years now has
taken its tole. Depression and sometimes giving up hope or the fight
to figure this out. This newest set of blood work is the only decent
results and indicators I have had thus far. So, I have renewed hope.

I am happy to have to found this support forum and look
forward to reading-learning and getting to know you all.
Thank you in advance, for any help and care.

Posted 9/10/2010 12:18 PM (GMT 0)
Hi Jen,

Welcome to the forum ... a great set of people here, knowledgeable and caring.

You have put up a brave fight for a long time. It sounds like you are on the right track to getting some help. Is there any chance of finding a Lyme literate doctor in your area? What are you doing to address the Candida issue? That can give you some terrible symptoms as well.

Take care
Posted 9/10/2010 6:21 PM (GMT 0)
Hi and Ty for ur concern
They put me on diflucan which I already finished and when I'm
Done with the doxycycline I will refill it once more.

I'm having a difficult last couple of days/nights. I'm wondering
If finally that 100mgs of doxycyline is working a little and I'm having
Some sort of herx response. The burning pain in my wrsis joints is unbearable
And I didn't sleep at all last night. Even took a super hot bath at 430am.

I've always been good at tolerating pain. But wow.
I have a name of a LLMD here in FL. I need to call and set up
Appointments.
Posted 9/11/2010 12:28 AM (GMT 0)
Hi Jen,
Welcome to our forum!! I am really sorry that you have a need to be here, but you have come to a good place!! You will find us to be understanding, caring and helpful group. We really do understand what you are going through. Something a lot of us here believe is that you need to be your own health advocate. You are the only one that really knows what is going on with your body. The best way to get started - IMO - is to read through the thread at the top of our forum titled "New to Lyme?...Start here". It's full of a lot of info that will help you. But please don't stop reading there!! You will benefit from reading everything you can.

I'm really sorry, but 100 mgs of Doxy a day isn't enough. Please make that appt with the LLMD!!

Dr. Joseph Burrascano is a well respected Lyme Disease Specialist. It would be good if you downloaded the pdf file on Dr. Burrascano's "Advanced Topics on Lyme Disease", as it is very useful to have.

The portion on abx & doses says " Doxycycline - Adults: 200 mg with food; doses of up to 6 grams are often needed, as doxycycline is only effective at high blood levels. Not for children or in pregnancy. If levels are too low at tolerated doses, give parenterally or change to another drug."

One mistake you will want to avoid is getting under treated. If you are under-treated you might be able to get your infection to go dormant, but it will return once your body is under just the right amount of stress. A lot of us have already been through this, and then ended up having to deal with chronic Lyme Disease.

Also, please detox! Herxes are mainly caused by the body being overloaded with toxins & the body needing help to keep up with it all.

Some of us find taking Melatonin just before bedtime helps us sleep. If that's not enough there are yet other things to try.

The Lyme Disease tests that are in use today will only test for antibodies, meaning it's in your blood stream and your body is putting up a response to it, but if your body is not trying to fight it off or is has already gone chronic (that's when it moves out of the blood stream, & into your tissues - where those tests can't measure) --- then there's nothing for those tests to measure - hence a false negative.

I hope this helps some.
May you find peace along your journey to health.
Trav
Posted 9/11/2010 1:28 AM (GMT 0)
TY~ Trav for the wisdom.

I am my own worse advocate, its complicated and I often
get stage fright in front of doctors. I forget tests/dates/even
previous doctors names. I write stuff down, come in with notes
just don't stand up for myself well. I'd fire me, but I can't.

I am determined now, tho to stop seeing doctors that "Don't Know"
or "Wait and See" attidute. I need the right doctor. I have to make
that appointment with the LLDM. I will need to bring my husband along
with me and we will have to make sure to dot our i's and cross our t's.

Its so very easy to give up fighting, give up trying.
I struggle with this a lot. I know tho, if mom isn't well
then everyone isn't.

I will look into detox. Figure out what I need to do about my diet.
I have already been attempting gluten free foods.
And drinking ionized water.
I am getting a VITD and B14 cream that you rub into ur skin
and it goes directly into ur bloodstream They call it "Happy Cream".

I have been on Doxycycline now for 3.5 weeks and haven't noticed any
changes in symptoms till now. And the last 2 days have been hell.
The burning and stiffness in my wrists/joints is intolerable a big change
from before the Doxycycline. I am hoping this is only temp. And relief is
eventually in my future. The sinemet helps with this usually and calms the tremors.

I know that I must push myself further to once again
try a new doctor. This time it maybe more expensive
but I am lucky to have a LLMD close.
Posted 9/11/2010 1:29 AM (GMT 0)
I just joined this forum a couple of days ago...I am NOT dx'd with Lyme yet, but I have to tell you that my left side of my body is where everything "begins"...It might end up all over my body (joint pain, aches, tingling, etc) but 90% of the time my left side is affected first.
Posted 9/11/2010 1:35 AM (GMT 0)
Can you get a copy of your Western Blot for Lyme? Usually CDC tracking criteria are used for diagnosis - even tho they were never intended for that. The "normal" WB could actually have Lyme specific bands that can be clinically significant. And Lyme is primarily a clinical diagnosis anyways - tests are secondary.

We're used to thinking of tests as being definitive - not so with Lyme. With all you've got going on, you most likely have a suppressed immune system.

If you've had a tick bite, there's also the possibly of a half a dozen other coinfections - babesiosis, bartonella, a couple of brands of Ehrlichiosis, etc. Usually these coinfections would need to be cleared up first before the Lyme treatment will work.

If you've had Lyme for a long time - a real possibility - there are 3 life forms, and one antibiotic will not work for all three forms. There is a spirochete (what Doxy kills), an L-form that hides out in your cells, and a cystic form. Doxy isn't good for the L-form and cyst.

It's a lot to take in all at once.

Also - just a request. For those of us with cognitive difficulties, it would sure help if you could break up your "wall of text" into smaller portions with some "white space" in between.
Posted 9/11/2010 3:42 AM (GMT 0)
I will look into getting a copy of the ELISA which was mildly elevated, and then my westren blot if possible. I could have one or two bands, which is a big deal with a person that has autoimmune probs. But the CDC requres there to be more than that for a positive test result.

Sry about the "wall of text" I had copy and pasted it from
a notecard. I can see how that would be difficult to read.
Posted 9/11/2010 4:38 PM (GMT 0)
Jen,
I'm not sure where you are getting your information, but the CDC doesn't require any blood work to be considered as positive for LD. On their own website it says this;

"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease. "

You should get & keep a copy of all tests that are done. Those are YOUR records, and - unfortunately - docs don't always tell you everything that they find. I was going through some of my older health records & found that I had reduced blood flow in my brain to two different areas - ans NO ONE said a thing to me!!! I had to wait several years until my brain fog lifted some & read it on my own!!

Thank you for breaking up your last post!!! It really does help!! :)

Detoxing will go a long way to help you feel as little less bad.
Posted 9/12/2010 3:40 AM (GMT 0)
I think Jen is referring to CDC reporting (I believe seven positive bands are required on a Western Blot)...this is why statistics and patient numbers for Lyme disease are so much lower than what is actually likely.
Posted 9/15/2010 1:01 AM (GMT 0)
I found my info on my LD blood work.
Band 18 -non reactive
Band 23 -non reactive
Band 28 -non reactive
Bands 30,39,41,45,58,66,93 non-reactive

The only suspicious Lyme indicator was
.97 equivocal repeat analysis ELISA

It's the only hope I've had for answers since
2004.

I have an immunity disorder and what a cruel
Thing that is. To be really sick underneath it all
And not have proof.

It's hard not to give up the fight.
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