posted
Can anyone help me understanding this. I finally had my first visit with a Lyme Specialist a John Hopkins Hospital in Baltimore. After many doctors and positive test. How they took me was threw there ER and they took a Lyme test and sent it to genx I think it is the one in Denver and it was positive. There ER recommends I get appointments with a nuro, infec, and rheumatoid. He asked me a lot of questions did an exam, touched me in certain areas ,as if those areas were suppose to hurt at that time,asked more questions. Than sent me to the lab for 9 large vials of blood. But what got to me Is some how he made a remark about testing for all this other stuff and I think there were 3 test for Lyme on there. How do they determine what type of Lyme do you have? he also made a remark about me not having Lyme and than shut up real quick. He wants to wait tell all test come back and I agree. You know I am going there finally thinking I am getting help and it seems like everyday things just feel worse. I finally got pain meds that help a little today but still can dot walk. My blood pressure is really low today for some reason so that does not help with the fatigue and the pain just keeps finding more places to hurt. So How were you diagnosed and than treated?
Thanks so much,
Teresa
Posts: 10 | From Silver Spring, Md | Registered: Mar 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I went from doctor to doctor for 10 years trying to find a doc who could tell me what was wrong with me and help me.
I went to Johns Hopkins and the doc there thought maybe I had a brain tumor. He didn't know what to do with me. So, I left there and made an appt with a doc in the Rockville area for 2 weeks later. I told him all the same things and he said to me, "I think you have lyme disease."
He sent me for a blood test and 2 days later called and told me I had lyme.
My message is that Hopkins wouldn't know a case of lyme if they fell over it. I read an article by a Hopkins doctor that says they don't want to get involved with lyme disease or lyme patients. I read their website regarding lyme, and I can tell you without a doubt that they don't understand the disease at all.
I really doubt they will diagnose you with lyme disease. A coworker of mine with a positive lyme test went to Hopkins (was taken there, she was so ill), and they assigned a team of 4 docs to her case. After 6 months, they still couldn't decide what she had but made a tentative diagnosis of Alzheimer's.
She had had a bulls eye rash (we all saw it at work) and started losing her memory and intellect right after that. But, her mother believed Hopkins rather than me and the positive lyme test.
Do I have to go on? Now, the lady is in a long-term care facility. No lyme treatment from Hopkins.
I took her myself to a lyme doctor, and he said it was medical malpractice what Hopkins was doing with her.
Please forget Hopkins and go to a doctor recommended by this site or by lyme support groups. (See Support Groups on the left side of the screen.) Hopkins will NOT help you, and you will just get worse and worse.
Why not post in "Seeking a Doctor" and call your post "Need lyme doc in Maryland." You will get a list of names to choose from.
AFter I got my diagnosis, I had to find a lyme doc through support groups to get good treatment for this disease. It is the only way.
You have to take antibiotics for at least a year. You need to take more than one at a time. And, you need tested not only for lyme but for the other diseases the tick probably gave you.
In Maryland, everyone with lyme also gets babesiosis and bartonella. These are 2 other tick-borne infections that the ticks in Maryland all seem to be carrying along with the lyme.
I got rid of my lyme disease 5 years ago by going to a good lyme doc recommended by a Maryland lyme support group. I now have a normal life, and I praise God for that every day.
We want you to get well !! You have a lot to learn about this disease. Keep posting and we will help you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Teresa don't let them tell you--You don't have Lyme.
It takes at least 2 weeks to get a WB test back.
At that time, you may not show enough bands to say positive according to the CDC/IDSA guidelines.
They require 5/2 bands to say positive. That is simply not so with this test...
So take your positive and run to the best LLMD you can find.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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