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please help me find an answer


Sent to Health Experts August 22, 2006 6:44 p.m.
Please help me! My brother in law, Dan Rufener, is 38 years old. August 2005 he developed a severe headache that would not go away. He went to the doctor but they could not find any cause for it. By November 2005 he got worse. He developed lots of muscle pain in both his arms and legs, he now walks with a cane,he is in constant pain every day of his life. He also has extreme fatigue. he has numbness, burning, tingling, swelling in his arms and legs. He has type 2 diabetes but has it under control. He has been diagnosed nerve damage in his legs that the doctors believe is from the diabetes. He has not been able to work since November. He has been on disability. He also has waves of cold and hot in his legs. He is frequently nausious and dizzy. He has been through numerous tests but they cannot figure out what is wrong with him. In January of 1993 he was in an elevator fall. January of 2006 he had an mri and cat scan done, they found he has deteriorated disks in his neck and also has osteo arthritis in his shoulders and back. We have read the symptoms of lyme disease and it sounds like that could be his problem but the tests here, in Wooster Ohio are not advanced enough to really detect it. We heard of a place in Pennsylvania that has a more accurate test. He also has memory loss that is continually getting worse. He is getting worse everyday and we are desperate for an answer! This past weekend he has a cat scan on his chest and they discovered lots of blood clots in his left lung. He was immediately admitted to the hospital. They did an ultrasound on his legs to try to find out where the clots came from but once again, no answers. He was released Sunday evening. He is on a 1800 calorie, low carb, low fat, low salt diet and is barely able to eat anything. He is on these medications: glyborite metformin,u-100 insulin 10, accuretic, sular, coumadin, cymbalta, amitriptyline, lyrica, arthrotec, lovenox, and a baby aspirin. After this scare with the blood clots I am more desperate than ever for some answers! We have been watching him suffer and deteriorate right before ours eyes. If all this has happened in less than a year whats going to happen in 6 months to a year from now? I am scared to death I need to help him. In my opinion I think he has lyme disease combined with complications due to the elevator fall. If he had the money to go to P.A. for the lyme disease test he would go. Or if you could get me the number where they do these tests I would surely find a way to pay for it. Please help me! Thanks, Laura Hochstetler 44618 email XXXXX@XXXXXX.XXX telephone XXX-XXX-XXXX

Edited by Tammy-Moderator on August 22 2006 at 10:01pm

Optional Information:
Male , Age: 38

Already Tried:
mri, cat scans, blood tests, ultrasound on legs, medications
Customer (name blocked for privacy)
Status: Closed   Value: $15   
Answer
August 22, 2006 7:45 p.m. (1 hour and 0 minutes later) 		ACCEPTED Check Mark

Dear Customer (name blocked for privacy),

I can understand your concern....a lot going on, and it must be very scary. Lyme disease is certainly a possibility. The deer ticks that carry Lyme disease are prevalent in the Northeast. Diagnosis can be done with lab testing and if you have any recollection of the typical rash that shows up after a tick bite....it looks like a little red dot with a larger circle around it....like a bulls-eye.

Symptoms other than the initial "bulls eye rash" can show up such as fevers, the headaches you describe, and another skin rash that shows up called erythema migans. Diagnosis is important, because if Lyme Disease is not treated, it can spread to the joints, nervous system, and the heart. This could explain his symptoms, including the blood clots. Cardiovascular disease can cause clots to develop in the legs that often break away and travel directly to the lungs. He could also be at risk for heart attack or stroke due to these blood clots. Once diagnosed, treatment can be implemented including blood thinners (anti-coagulant) medications.....Oh, I just noticed you mentioned he is on Lovenox (blood thinner) so he's covered for the blood clots.

For the Lyme Disease itself, antibiotic are usually given orally for a couple of weeks. Doxycycline, amoxicillin, or cefuroxime axetil are the most common. Sometimes in more advanced stages of the disease, IV antibiotics are needed. In that case, ceftriaxone or penicillin are given via and IV. His diabetes just compounds all of this.

The CDC (Centers for Disease Control and Prevention) is a nationwide organization that can help you find resources in your area where your brother-in-law can be tested in your area. They can also help you with the financial issues, as well. Call their toll-free line for information on where to go in your area: 1-800-311-3435, or they have a website where you can contact them for info: http://www.cdc.gov/netinfo.htm

The CDC is headquartered in Atlanta, GA however, there IS a facility in Cincinnati. This should help you from having to travel all the way to Pennsylvania (there is another facility located in Pittsburgh.) The phone number above can refer you with the details.

You could also ask his primary doctor if your local diagnostic laboratories are able to do the testing. There are three main categories of Lyme Disease Tests. Ask if they do these in your area.

1. Indirect Tests (serum antibody tests):

ELISA; Western Blot; IFA; Borreliacidal Antibody Assay (Gunderson test);T-cell Activation Test

2. Direct detection tests:

PCR (DNA amplification); Lyme Urine Antigen Test (LUAT); Antigen Capture Test; culturing of skin, blood, CSF, urine, or tissue; immune complex / antigen-antibody test

3. Tissue Biopsy and Staining:

Silver Stain; Gold Stain; Fluorescent Tagged Monoclonal Antibody Stains; Acrodine Orange; Gram Stain; Muramidase; etc.



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