[b]Betty's Story - 1994 to 2008 - Just Re-infected

Betty’s Lyme Story – 1994 to 8/2008

This is about both my wife Betty and myself. We both have Lyme disease.

We are grandparents of 5, married for more then 47 years.

Betty first became ill in 1994 and was told she had an inner ear infection as she was dizzy all the time. Initially, like many, she felt she had the flu.

We always wonder who was the egg and who was the chicken. Thankfully I took the natural route to fight my co-infections. Betty went through 4 years misdiagnosed with fibromyalgia and minimal antibiotics.

During those first years she, like many other Lymies saw many drs, all with a different diagnosis.

I suffered with severe migraines for those first 5 years and contributed them to stress because my wife was so very sick with severe chronic fatigue and achey joints.

I was very sensitive to both light and sounds.

After surfing the Internet we visited a LLMD, some 500 miles north of us on Long Island. Before the results of the LUAT test were received the dr immediately told Betty that she had Lyme disease because of all the problems that she had suffered over those first 4 years.

The NY LLMD prescribed IV antibiotics. When we returned to VA and brought this information regarding IV antibiotics, we were refused treatment by at least four different drs and medical facilities.

One dr said it was against her ethics to treat Betty with IV antibiotics.

We lucked out and found a dr who had moved from NY and was familiar with some of the treatments that LLMDs had used.

Betty had her first PICC line placed in her arm at a hospital in Richmond. Finding a clinic that would administer her IV in the Lynchburg area became another chore. Eventually we found a visiting nurse who came to our home and administered her first IV. On her second visit she instructed me on the proper procedure and steps to follow-up with more daily IVs for the next 30 days.

When we returned to the dr in Richmond we found out that since he was relocating to FL he would no longer follow-up with the IVs. She had her first PICC line removed.

Once again I went on the Internet to find another LLMD.

After many hours of surfing we found a LLMD some 500 miles from VA. It turned out to be a 2 day trip every month for 4 years.

Right away Betty knew that we had found a sympathetic LLMD as he gave her a big hug and told her that she would feel better.

Our LLMD practiced Integrative Medicine and prescribed natural supplements as well as several other IV and oral antibiotics over the next 4 years.

I continued to chat with other Lymies in chat rooms and was encouraged to get tested since my migraines continued on, unrelenting. There were times that I had to go into a room at work and turn out the lights because my migraines were so brutal.

I had already been tested with several negative Western Blot tests.

Betty had about 7 negative Western Blot tests over 6 to 8 years.

Our LLMD had us both take the culture test that were administered by a lab in FL. Some LLMDs feel that this lab is almost always positive and don't feel comfortable with their results.

Our colored photos of our blood cultures show the actual spirochetes. Oh! These tests are very expensive and out of pocket. Our health insurance would not pay for them.

We have had to refinance our home 3 times so that we could get rid of the exhorbitant interests rates of our credit cards. One of the antibiotics cost was more then $300.00 which was only partially covered by our insurance.

Betty decided to stop all drugs and try the natural route for the next 4 years.

After 10 years in a wheelchair Betty was finally able to drive a car and do things she hadn't been able to do for those past 10 years.

BANG! Betty was bitten again this past July (2008) by several ticks. She became so weak that our daughter had to help me take her to our family dr. When the dr saw how bad Betty was she told us to take her to the ER at a hospital in Charlottesville.

The ER doctor told her that she couldn't possibly have Lyme disease since she had already been treated with antibiotics.

Our daughter gave the doctor a piece of her mind and basically told him that he did not know what he was talking about. If I had been there I might have punched the guy in the nose.

Thankfully another infectious disease dr admitted Betty for IV treatment.

The following day Betty perked up a bit from the IV antibiotics. The dr would not release her unless we were able to get the same antibiotics in oral form. We could not find it in several drug stores but it could be ordered.

A relief dr appeared on the scene and suggested Betty try IV doxycycline even though it was in her records that she was allergic to it. The dr said that she would have to deal with any reactions!

The nurse monitored Betty for any allergic reactions. Seeing none over the next 4 hours they released her and sent her home. Guess what? On the way home she started to break out in hives.

When we got home I called the nurse's station and told them what had happened. The nurse told us to bring her back to the ER! WOW!

We called her family dr the following morning who then prescribed tetracycline, a cousin of doxycycline.

It seemed like Betty was getting worse on the tetracycline. Looking back, it might be that the tetracycline might be killing the bacteria, releasing toxins and making her feel worse.

Here we go again. I searched once again on the Internet for a LLMD. The 3 that we located here in VA were not taking new patients. One told us that the closet opening was in DEC.

The closet LLMD that we were able to get an appointment with, was in NC.

It was also an Integrative Medicine group.

We felt that the dr was very thorough in our first 2+ hour appontment. We are now waiting for the test results as well as the antibiotics that has been recommended.

Betty has been very fatigued the past few days. Once again it might be that the tetracycline IS WORKING and causing a Herxheimer reaction.

It seems like we have gone back almost 15 years! Please Pray for us. Thanks[/b] [img size=238][size=4][/size]

Post edited by: JoeInVA, at: 08/26/2008 00:28

I am so sorry for what you and your wife have been through. Lyme is a horrible disease made worse with both spouses having it. My mom and sister live in Altavista is that near you? Check out the recent post by InnkeeperVA, Fin gave her a link to a website for support groups in VA. It seems like you both really need support in any way. I hope the new LLMD can help both of you. I think any supportive treatments are good if you are doing conventional antibiotics. I have chosen the all natural route and I'm improving steadily. I will be happy to pray for you and your wife.

Good luck and take care,

Denise