Is This Lyme or Scam? - Lyme Disease Message Board

soar1 · 12-26-2001, 11:52 AM

My wife's aunt and uncle live in Virginia and she has has various illnesses and maladies over the years, fatigue, pain, etc. He has not had many symptoms ever and has traveled extensively for years. Neither of them can remember ever having any lyme symptoms, such as bite, rash, fever, etc. that go with a lyme tick episode. Over a year ago they went to a Lyme specialist in Pennsylvania and were both diagnosed with Lyme disease and have been on an expensive antibiotic treatment regime for about a year now. They both have not gotten better and in ways have been worse since the treatments. My wife's uncle was also told he had Rocky Mtn. Spotted Fever, which from research says, that you become extremely ill and it can often be fatal. Now the doctor has told the uncle that he has been reinfected with lyme disease and should continue his antibiotic treatments.

My wife and I think her aunt has some other auto-immune illness as they run in her family and that they are both being mis-diagnosed and mis-treated. Any thoughts on this from those of you who are knowledgeable and involved with this disease?? Any help would be appreciated.

Soar1

12-26-2001, 08:59 PM

Soar1 you have asked some excellent questions! Lyme Disease is the second fastest-growing infectious disease in the US after AIDS. It is severely underreported. It can be difficult to diagnose because no test is completely reliable. Also, many people do not remember getting bitten by a tick. Ticks are tiny and inject a numbing agent so you cannot feel them bite. Only about 50% of people who have Lyme ever get a rash. Some people may have a fever with Lyme, but it is more common to have a lower-than-average body temperature.

It can take time to recover from Lyme, especially if the person has been sick for a long time. It is normal to feel worse before feeling better. There is a reaction called the Jarisch-Herxheimer Reaction (herx). Often, when people with Lyme take antibiotics their symptoms may become worse or they may get new ones. The antibiotics are killing the bacteria, which release toxins, making them feel worse. It is very scary when it happens, but it is a good sign the antibiotics are working.

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme Disease and treat with outdated protocols. Lyme needs continuous, aggressive treatment. Untreated or undertreated Lyme can be serious. Ticks also carry co-infections--Babesiosis, Ehrlichiosis, and Bartonella. Many people with Lyme have one or more of these also. Having them will affect treatment choice and progress. It is a good idea to be tested for them. Do you know if this couple has been tested for these?

There is no one antibiotic that works best. There are different strains of Lyme. Some people respond to certain antibiotics while others respond to different ones. It can take time to determine which treatment is best for each person depending on whether or not they have one or more co-infections, the state of their immune system, how long they have been sick etc. It may be possible the uncle has not recovered from the initial case of Lyme or it could be that he was re-infected.

Tickborne illnesses can be extremely serious especially if they are not diagnosed soon after infection. I almost died from Lyme Disease and the co-infections, because I was not familiar with them and went several months before getting diagnosed. It has taken time, but I am getting better. Education and prevention are the best defenses. There is an excellent book called "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner.

I have a good list of resources on Lyme that I can email to you. You may email me at ko_@bellsouth.net (the _ after the ko is an underline). Please mention your screen name as a reminder for me.