Lyme Disease and AIDS Comparison

I have heard people who have Lyme disease compare it to AIDS in the 1980s.  Little was known or understood about AIDS then, even by the medical professionals.  The comparisons are accurate.  The ignorance has allowed this disease to spread, and many people are misdiagnosed, left untreated, or will die of this disease.  People need to be more informed of the danger of Lyme disease, so that they can protect themselves.  Most do not know the danger that this small tick carries or devastation that it can cause in your life.  I certainly did not.

I remember the days when people were demonstrating in peaceful protests called ACT UP for AIDS in the 80s.  Similar demonstrations are being planned this May for Lyme disease.  Many people who are well enough to demonstrate are going, along with their families to demonstrate for Lyme in Arlington, Virginia in what is being called the May Day project.  People have even been creating Lyme quilts, similar to the AIDS quilts that traveled around the United States to raise awareness and support for AIDS research.

Many Lyme disease patients lose their jobs, homes, marriages, life savings, and their ability to work and take care of themselves.   I have often wondered how many people are suffering from Lyme disease who do not know that they have it.  How many were told that they had arthritis or it was all in their head?  What happens to those people?

Lyme patients and their families have started letter writing campaigns to doctors, health insurance companies,  and politicians.   Lyme treatment is being denied by health care providers and insurers because it is not recognized as a legitimate disease.  Many doctors will not prescribe more than a 2 week supply of antibiotics because that is what the insurance will cover for Lyme disease, even when it has reached the tertiary stage.

Help At Last

I finally had an appointment with a Lyme disease doctor.  I had heard through the grapevine, that this doctor was not only trained in Lyme disease, but she had close relatives who had contracted Lyme disease.  She knew the symptoms and the suffering that goes with this disease.


The next day, I worked until noon and drove the back roads through the country, which proved to be a short cut to the office.  The doctor did an interview and asked me to describe my symptoms to her.  She had me fill out a questionnaire before I even came to her office.  I had also gathered records from several of my previous doctors.  I had an Eliza test that showed a high positive for Lyme disease.  When she saw that result, she said, "Well, I would have just gone with that.  I will run a Western blot test, but based on all of your symptoms, I'd say you are a typical Lyme disease patient. The test will take 3-4 weeks to get back. Do you want to start taking antibiotics now, or wait for the results?"

I said, "I'd like to start now.  I have been waiting almost 3 years to get treated."
She emailed my prescription to the pharmacy.  I thanked her and drove off to pick it up.

Taking The Heat

Another controversial therapy is being used in Germany to treat Lyme disease.  A doctor there uses thermal therapy to kill off the bacteria, which cannot survive high temperatures.  I am wondering if daily use of a hot tub or an electric blanket could do the same thing?  My partner, Tom purchased a heated mattress pad for me because I have an extreme sensitivity to cold.  This helps me to sleep at night.  I may have to crank up the heat even more to kill the bacteria.  This supposedly mimics a fever which kills the spirochetes.

The German doctor puts his patients in a heated chamber of sorts. This, combined with antibiotics and fasting for several hours, seems to cure patients quickly. Apparently the body's cells are starved and the only thing it can find are the antibiotics, which kill off the bacteria in short order. The heat supposedly increases the effectiveness of the antibiotics.  It is sort of a three-pronged approach to killing off the little buggers.  It is very expensive though.  I am not sure that it would be covered by insurance.  And of course, the travel expenses would be prohibitive for most people with Lyme disease.


Click the link below or copy paste to your browser to find out more information:


http://healthspaceclinics.com.au/blog/hyperthermia-a-cure-for-lyme-disease

Watching, Waiting, Worrying

A couple of weeks after calling my Lyme disease specialist and getting on the waiting list for an appointment, I got a lucky break.  Someone cancelled their appointment.  I received a call from the doctor's office asking if I could take the appointment that next afternoon.  I made all of the necessary arrangements.  I would work until noon, and then get in my car and drive 45 minutes to an hour to make the trip to the next county north of Indianapolis for my appointment.

Luckily, I had stopped by the office of the sports medicine doctor's office and collected my records from two years ago.  This was one of the first doctors that I had seen when the symptoms began.  He was the first doctor that tested me for Lyme disease.  He declared my test a "false positive" and sent me to an infectious disease doctor.

When I asked for my records at the sports medicine doctor's office, the receptionist asked where the records were going.  I told her and she replied, "You are the second patient this week who has requested their records because they have Lyme disease.  The other patient said that he is going to that same Lyme doctor in Zionsville."  I found it interesting that two of his patients were transferring their records.  Especially after reading my records and discovering that he had written that I most likely had a conversion disorder and that there was nothing medically wrong with my legs.

I couldn't help but feel cheated out of the last two years of my life, but that was about to change.

Weird Science

I read an article the other day that said a scientist did a study that suggested that Lyme disease can be treated by simply taking Claritin sinus and allergy medication that is available over the counter in drug stores and grocery aisles.  I bought some on the way home from work and plan to test this theory.  Wouldn't that be great if this were true?  It certainly wouldn't hurt to try this.  Anyone else out there try this with any amount of success or failure?  I will post the link to the original article here and update everyone on the outcome of this latest idea.   I am not a health care professional and I am not giving medical advice here.  I am just a Lyme disease patient who is trying to heal and give others comfort with their own struggles with Lyme.  I often wonder if others are having similar symptoms or experiences?

Here is the link to the article:
Copy/paste to your browser.

 http://lymedisease.org/news/lyme_disease_views/claritin-lyme-balf.html

Hear ye! Hear ye!

My hearing has become a huge issue with Lyme disease.  I have had significant hearing loss.  So much so, that I cannot hear phones ring, no matter what the ring tone or volume.  Like my hair loss, I have no idea if this will become a permanent condition or if it is a temporary manifestation of a symptom of late-stage Lyme disease.  What I can hear now, is the constant low-pitch ringing/screeching that is called tinnitus.  This is very common and troublesome symptom of Lyme disease.  At times it is more severe than others.  Some times, I do not hear it at all.

I have read recently that many have had success taking supplements.  One cure that I have read about is taking magnesium.  I will try this and update the results later.

Cat Scratch Fever! (The disease, not the Ted Nugent song)

Cat Scratch Fever, or Bartonella, is a co-infection that is one of many that is carried by the same deer ticks that carry Lyme disease.  Yes, you can catch it from a cat scratch.  Cats don't get this disease themselves, but they are carriers of this disease. If you have contracted Lyme, you most likely have one of the co-infections such as Catch Scratch Fever or Bartonella, and that is why it is so difficult to treat.  Your immune system gets weakened to the point that your body cannot fight off the co-infections, even with antibiotics.

One of the symptoms of Cat Scratch fever is an enlarged spleen or a splenic cyst.  My chiropractor found a cyst on my spleen just before I tested positive for Lyme disease.  Another symptom of Catch Scratch fever is swollen lymph nodes.  I had swollen nodes throughout my body.  Looking back, I can't believe that the doctors that I went to did not connect the dots.  I kept asking every doctor about the cyst on my spleen.  I asked them if my illness was related to the cyst on my spleen, and every one of them said that it was completely unrelated to my illness.  It was the most obvious evidence of a systemic illness and yet they all denied any connection.  Shame on them.  Any search of a splenic cyst should have come up with Bartonella.

Perhaps I need to change the ring tone on my phone for now to "Cat Scratch Fever."