Has anyone been tested for Lyme's Disease?

[DanzGrl]

Has anyone been tested for Lyme's Disease?  One of my docs is running tests.  I don't know anything about it. Any comments?

[Maria3667]

Hi DG,

About 11 years ago I was bitten by an infectious tick and contracted Lyme's. But my Dr. got to it within two weeks and treated me with anti-biotics for 10 days. Still, soon after I developped extremely dry eyes & mouth and I was diagnosed with Sjogren's. Since then I've been tested 2x for Lyme's, but results came back negative.

However, some people say I still could have Lyme's as I should have been treated with anti-biotics for at least a month, routine tests 'suppossedly' give false negatives and some symptoms of Sjogren's and Lyme's overlap...

I don't know what to believe. All I know is that the symptoms, whatever they stem from, are a pain in the b... and I wish they'd find a cure soon...

There's load's of info on Lyme's on the net. Googling Lyme and symptoms should give you an idea.

Best wishes,
Maria

[gurs]

Oh cheez...I was dealing with this same issue almost 2 years ago. I developed Sjogrens when I was 15...parotid gland swelling, dry eyes and mouth. Over the years, symptoms got worse, but I was able to function. When I turned 30...all heck broke loose..sjogrens just got very severe..Anyways, two years ago, almost overnight, I woke up extremely dizzy, lightheaded, anxiety, numbess/tingling all over, horrible stomach pain, joint aches, head pain..the list could go on. I thought it might have been a flare of sjogren's, but it felt different then any flare. I went to the hospital and they sent me home saying it was Lupus/sjogrens related. I thought I would feel better in about a week, but I got progressivly worse. I couldnt eat (lost 15 pounds in two weeks) and could barely stand up. The pain was so severe, but everytime I took something for pain like I normally did, I felt even sicker.
I had every test imaginable in the hospital..cat scans, MRI, Lumbar puncture, 1000's of labs..crazy. I kept reading about Lyme disease and thought..."Oh this is me"!!
I finally went to a Lyme doc in my area, who sent my blood to Igenex, a top lyme lab, and It came back positive for chronic lymes? I was a bit relieved, but then, my rheumy
said that Sjogrens and other autoimmune diseases can act just like Lyme's, and often give a  false "POSITIVE" I guess I could have taken the antibiotics given, but my
systemic yeast was already out of control (in my esophagus), and I wanted to see other doc's to see what they thought. I went to around 4 other doc's who said my blood
to other lab's...all came back negative for lymes? Who knows? Im still as sick as ever and it's been almost 2 years. I had a total hysterectomy just 6 months prior to this all, and my doc's seem to think my hormone levels causing my sjogren's/lupus to flare??  Not so sure........nothing seems to be calming it down..have several IVIG's, course of Rituxan, all which seem to be making me sicker?

I guess if you have chronic Lymes, It can take years of antibiotic therapy to help. I would try and give the antibiotics another whirl If you can. they say if you start feeling better, then you have Lymes. Wish they would come up with some better diagnostic testing for this and autoimmune diseases. Good luck!

Gurs

[irish]

I don't have Lymes disease although I have been tested for it several times. However, my DIL has a friend who has it and it took years to get diagnosed. The problem with Lymes is that the testing is very tricky from what I hear. There are only several labs in the country who do the blood work and I have heard that there is one of these labs that has the most reliable tests. I guess if I felt as ill as you two are with very probably Lymes exposure I would google and just keep reading til I found the lab. In fact, that one lab, Igenex, that was mentioned by gurs, might be worth trying again.

With all the problems in diagnosing and treating of lyme disease I would think that antibiotic therapy might be worth the effort if it would make one feel better. It is the neurological involvement that is really a bummer with lymes, not even counting the pain. Good luck gals. Irish

[Scottietottie]

I hope the testing and diagnoses of it is better than it used to be. I had a friend who worked in Canada, got bitten by a tick, got ill, came back to the UK and never got better. The internet wasn't really available then the way it is now but she spent hours in libraries trying to work out what was wrong because she felt so ill.

She thought it might be lupus and then stumbled upon 'Lymes' and it all fitted with the tick bite. She couldn't get anyone in the UK to put her on the antibiotic protocol that she's read would be most effective.

She scraped money together to go to the US. The specialist she saw there was pretty sure she was right - and that it was Lymes. (Lymes was pretty well unheard of in the UK back then. It's here now, though not common)
He started her on the antibiotics she needed. Unfortunately she couldn't afford to stay in the US and when she came back here they wouldn't prescribe the quantity of antibiotics required.

Sadly she decided to end her life because she just couldn't live the way she was. I'm sure, with a diagnoses and treatment, she'd be alive today.

Take care - Scottie

[Billydude]

I've been tested.  It was suspected before Sjogrens with considered. 

[navydad]

heres my story and Lymes,, when i first started to get sick with weird symptoms,, in between being labled a nut,, they ran lymes on me two times,, everytime negative,, last time I was in th hospital ,, they did a spinal,, and I idnt know the neuro ran a lyme test,, I asked her about it when i saw her last week,, seh said,, we ran that on you,, and it came back,, inbetween negative and positive,, now from what i have been reading,, most lab work will prob show a negative,, and unless they look for a specific parasite,, it will contiune to show negative,, she told me,, its very hard to DX lyme,, and is running the test again,, sometimes I think I have advanced Lymes,, wheni was on Vanco,, I swear I started to feel better,, but when it ran out,, i started to go downhill again,, I dont know if its a coincidence or not,, cant rule out anythin at this point,, esp when your GP says,, your labs are normal,, so the saga continues,, my oldest son works for Johnson and johnson,, he had to go to John Hopkins,, yesterday to repair some hospital equip,, he told me,, dad we should get you there,, the plce is huge,, 1,000 bed hospital,, mostly single to help keep iinfections down,, and there building two new wings,, here i go again,, running off topic,, sorry :-)

[trector1955]

Navydad
       Well I guess you or your son live close to John Hopkins. My niece and Nephew work there. They are engineers. I am waiting for an apt to see the dry eye specialist there. if ever i get an apt. My left eye is getting worse. My younger sister has so many problems I wish she could get an apt at John Hopkins. She has one of those pain pumps. I think she needs to get rid of it. She can barley walk. The Dr. upped my Lyica and I am feeling very well now. I also got two shots when I was at the rummys last time. I am sorry to hear about all your problems. maybe you should go to John Hopkins its sub. to be one of the best hospitals in the us. I hope your wife is OK. Stress is the number one problem with us so don't get stressed.
Thanks for listening.
Theresa

[navydad]

No,, I live south of Pittsburgh,, home of teh 6 time super bowl champs,, My son lives in Reading,, but has to travel a lot to JH ,, UPenn and most of the hospitals between Philly and down to Baltimore

[gurs]

Navydad, Im with you. I think because most of us have been diagnosed with autoimmune, they rule the Lyme's out and just chalk it up to the autoimmune. BUT, its possible to have both right? We can get tick bites too...
I'm not sure even a top hospital like Johns Hopkins would be able to help with the diagnoses. Depends on the labs. I heard Igenex is the top lab, which is where I tested
positive.
I wish I could give the antibiotics a whirl, but my yeast is out of control. They say if you start to feel better on them, then you prob have Lymes?

Good luck to you.