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[tangye5]

Had a brain rupture in 1999 and recovered but have been left with times that seem to make me stare off. I have asked to have an EEG. The Lyme disease got terribly debilitating, brain fog, site problems, pain everywhere, Fatigue that can not be imagined unless you have experienced it. Just received a herpes panel test results. Elevated CMV, EpsteinBar, Tumor necrosis factor off the charts. Just had another tumor surgery a week ago. The tumor went from the right of spine to the hip. It was removed in many pieces and the scar is quite large. Anyway, the starring events are becomming more and more, at times almost feel like I am about to pass out. I am a Registered Nurse. Of course I can't work because of the disabling Lyme. I think the plaque is growing in the brain. I am on IV therapy. I just wish more doctors were studying the effects of this horrible disease. In August of 1989 I presented an engorged tick to an army hospital and was told not to worry. No Lyme Disease in Texas. If only I had been treated with an oral antibiotic at that time. I went for ten years and one surgery after another, shoulder (two), feet neuromas, knee aspirations, floaters so bad in right eye that vision was so obstructed and no one could answer why, angina, dizzy spells with no explaination. Sinus infections that would not end. One kidney infection that took eight months to finally resolve. I have sleep apnea and am on O2 and do sleep well since that dx was made four years ago. The pulmonary doctor was contacted when my PCM read an oxygen saturation rate of 79%. Lung scans were totally clear. Cardiologist did a heart catheter. It was negative. I finally went to a Lyme Literate doctor and my blood was sent to IGenex Lab in California. Bingo! Positive for two types of Borrelia and Babesia WA1 ( this one was probably the cause of malaria type symptoms). A chest catheter was placed and IV azithromycin and IV Flagyl for the cysts and IV Rocephin for the spirochete. You can see the dots in my blood cells. The doctors said that 12 years without treatment left me with neuro. problems. I do think that I have a seizure disorder and that is not uncommon for those of us that are CHRONIC. The infectious disease doctors say there is no such thing, yet when the army tried sending me to three different infectious doctors all three offices said they do not treat Lyme. How Lame that the article, released Oct. 3, 2007' stated by this association in the New England Journal of Medicine said that there is not such thing as Chronic Lyme Disease. Ask the millions of us out there how we are coping and we will tell you much better on our meds. When they are taken away we revert back to our wheelchairs and alzheimer like states. Cysts on the brain and interuption of synapses probably constitutes some sort of seizure disorder. Just waiting to hear latest dz. Thanks for reading.

 

[Birdbomb]

Welcome Tangye

Got to love those military doctors! Believe me I can understand your anger and fustration 100%! We are retired Air Force. For me my misdiagnoses is Rheumatoid Arthritis. Everyone ASSUMED it was osteoarthritis, I have BOTH. No one really bothered to check. Was told : nothing wrong here, learn to live with it, it's because of my weight, stress, depression, and about 20 other excuses. I was checked for lupus back in 1983, nothing. This past Feb EVERYTHING was checked including lyme. But it's severe RA with fibromalgia and now I'm on chemo, just can't get it under control. There is a major flare brewing at this moment too. ARG!

Chronic disease/disorders are maddening enough to live with, it's trying to get others to understand and sometime the medical professionals are the WORST! Some think nsaids should be enough to control pain and swelling. Oh brother! I eat lortabs, darvaset, percocet and tramadol like candy! They should live in my body for a day, they'd be shooting morphine!

 

[RobinN]

Welcome Tangye - I just moved you to your own thread so we can all meet and greet.
There has been a lot of talk about this debilitating disease in the Autism circles.
I can't even imagine what you have been through, and how frustrating that journey has been. I hope there are some alternative therapies here that can make life more enjoyable than it has been for you.

There are some nice places to get comfortable here.

 

[Nancy]

Hi Tangye ~ I'm sorry that all of this has happened/is happening to you - how awful.

In 1990 the military docs said I had developed epilepsy that was causing me to have seizures ... they missed the brain tumor.

I hope you're getting better care now.

 

[TeeTees]

Welcome Aboard Tangye

Sit back, relax, and realise that you're not alone on here - feel free to ask questions, and vent away when necessary. :cheers:

 

[speber]

Welcome Tangye!....

And I thought 'spotted tick fever' was bad! I was in a hospital with an unknown (and now forever undiagnosed illness) next to a woman from my hometown who exhibited the same symptoms as I did. They claimed she had 'spotted tick fever'....they gave up on me. She was also the janitor at our high school.

I hope things get better for you soon!
:rock:

 

[Bernard]

Hi tangye5, welcome to the forum. :hello:

 

[brain]

:hello: Tangy!

Welcome to CWE Forum! Thanks for
sharing with us your story! There's lots
to browse around here in these threads!

Enjoy and make yourself a home!