posted
I have not been diagnosed. However, MANY people have asked me if I have been checked for it. One friend told me that Texas is lousy at detecting Lyme. Is this true? I'm visiting MN (Minneapolis) for the next day and wondering if I should get tested while I am here...
My story in a nutshell- 2008 was a doozy. Got the flu. Could never quite get over it. Lost all my energy. Went to the ER three times because I had extreme headaches and was losing feeling in my extremities. They kept sending me home with "migraines" which I kept fighting saying they weren't migraines- I had had migraines since I was 8! I never lost feeling in my extremities with a migraine!
Four doctors later, they finally ordered a spinal tap and MRI which revealed 3 herniated discs in my back and meningitis. In the hospital off and on with the meningitis.
Ended up having 3-4 spinal taps. The second one went awry. Doctor missed his target. Sent electricity through my body. I screamed and cried like a baby as he wiggled that needle around in my spine trying to get it in the right place.
Later that night, I started violently vomiting. Never slept. Vomited all night until I was just dry heaving in the morning. Mom took me back to the doctor. By the time I got there, I was puking blood. It took a team of about a dozen physicians and nurses to hold me face down on the table (due to my convulsions), while they drew blood from the back of my hand. It felt like a rusty nail going into my hand- I was so dehydrated. Ugh! They took that blood and put it in the hole in my back where the spinal tap had been. This is called a blood patch.
Last thing I remember is hearing a doctor say," Oh my God. I have never seen it this bad before" and another say,"She's going! She's going!" That was the last thing I remembered before I woke up in the hospital.
Anywho, I saw MANY doctors while I was there, including an infectious disease doc. They tested me for Lyme then. They told me I was negative. From what I have read now, it seems like it is easy to get a false negative? Is that right?
Since the meningitis, I have seen many more doctors, because I haven't ever been able to recover 100%. My current symptoms are chronic pain, extreme fatigue, extreme depression, anxiety, sleep problems, hypothyroidism, restless leg/foot syndrome, loss of memory, weight issues, hair loss, rash, and more I am sure I am forgetting- lol!
Here are what some of the many doctors I have seen say:
Neurologist- 3 herniated discs in thoracic region of back, one is touching spinal cord.
Spinal specialist- "we can do back surgery, but I'm gonna have to cut you open from the front all the way from your breasts to your pubic area, take everything out, fix it, put everything back in, sew you up, and hope for the best. 8 months bed rest and there is no guarantee it will even work. I would not recommend surgery."
Rheumatologist #1-Rheumatoid Arthritis. Was taking all sorts of meds including daily shots for a LONG time with NO relief. Not a compassionate doc at all. Horrible bedside manner. Fired!
Rheumatologist #2-Fibromyalgia. That was his diagnosis. No meds. No nothing. That's what you have. Done.
I saw many other doctors during that time- but I can't remember them all, plus other things such as acupuncture, massage, chiropractor, etc.
I did nothing for years after that. I became really depressed. None of the doctors could agree. EVER. I forgot to mention- when I was in the hospital, they thought I had some rare brain tumor (then changed their mind), then they told me I had MS (then changed their mind), I was also told I was vitamin D deficient. The doctors when I got out of the hospital couldn't seem to agree either!
This has been a very long and tedious road. I don't know if I have Lyme's. But I really want someone who can tell me for sure because it seems like everyone I have worked with thus far...I don't know. They just aren't getting it. I can't continue to live my life from bed. I have a beautiful daughter. I need the energy. I want to be pain free. I need a life again.
Please. Can you help refer me to someone in Dallas, TX? Is there such a person in existence???
TIA!!!
Posts: 1 | From Dallas, TX | Registered: Mar 2016
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So sorry you are going through this. I would also suggest you write all your history in a new post in the "Medical Questions" section. There are many knowledgeable people on Lymenet who will gladly give you valuable advice.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
I don't know if you are able to travel, but please read the following about LLMDs and Texas which was recently posted about TX:
"Texas is not a great place to find a good Lyme doctor. Texas threatens its Lyme doctors and gets them to move or stop practicing without notice.
Then, if they start up again a year or so later, they do it to them again. So, there really are few Lyme doctors there and no top notch ones.
Because of the sorry state of affairs in Texas, many folks from Texas are coming to the D.C. area for testing and treatment for Lyme disease and it's co-infections.
Everyone is very happy with him and he follows the Burrascano protocol. Burrascano was the Lyme Disease pioneer and the #1 Lyme doctor in the world before he retired a few years ago. Patients came from every country to be treated by him.
The doc I recommend can see you in several weeks and I don't think you would regret it. After the first in person visit, you can do telephone or Skype appointments with him monthly. So, there would be little travel involved, only a few times per year.
At least half of all Lyme patients travel out of state for their care. The doc is the key to the diagnosis and for getting rid of this horrendous disease. I can't emphasize that enough-the doc is the key.
This is what I wrote to another Texan in Sept. Look at the following thread to see all of our discussion:
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Texas is even more horrible than most places at detecting and treating Lyme.
False negatives are common. Lyme is a clinical diagnosis, meaning get it is based on symptoms rather than bloodwork bc Lyme testing can be very insensitive.
In my opinion and based on my knowledge and experiences, you need to be evaluated by a qualified LLMD. Can you travel out of state, because, again, Texas and surrounding areas are notoriously horrible for Lyme detection and treatment.
If so, please send me a message, and I can send you a name. I have to travel out of state to see a LLMD. For the first time in ten years, I am making progress since working with my LLMD.
Best wishes to you.
Posts: 1431 | From USA | Registered: Mar 2015
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posted
Glad you found us and I hope we can help. There's not much hope for MN... they have MAYO up there and Mayo is clueless when it comes to Lyme disease.
I'll PM you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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