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."

Lyme and Alzheimer's Disease: What's In The Future?

There are several doctors who have posted videos about a possible link between Lyme disease and Alzheimer's disease.  I do not doubt that this is a very real possibility.  More research needs to be done on Lyme disease.  It is such a "new" disease, that not all understand it or accept that it is a real condition.  I am just beginning to understand this disease, and I have it myself.  

When I was discussing my condition with an infectious disease doctor, before I knew what it was, he tried to write off my symptoms as menopause or hormone problems.  I replied, "My 82 year old mother gets around better than I do."  Sadly, this was no exaggeration.  If the Lyme disease is causing the same kind of damage to my brain as it is my body, I have plenty to worry about.  The body can heal, regain a certain amount of strength and flexibility, even in middle age.  Not so the brain. Thank God for spell check. 

Click link below for a credible story about the connection between Lyme and AD:


http://www.alzheimersweekly.com/2014/05/lyme-disease-dementia.html

Dropping Out

Early on, when I started having symptoms in my shoulder, neck, and arms, something weird started to happen.  I would suddenly drop things for no apparent reason. I suppose it was the damaged muscles, tendons, or nerve damage that caused me to suddenly drop things.  My wrists were sore to the point that I had to wear wrist guards on both of them.  I broke bowls, plates, coffee cups, pie plates, and jars.   I broke one of my covered casserole dishes that was part of a set of Martha Stewart bake ware.  I was just sick about breaking it.  It was designed to go from oven to table to fridge, and had snap on lids.

Several months later, I took the lid to a Goodwill store on the way home from work.  I found the exact bowl that fit the lid!  What were the odds of finding that exact bowl the very first time that I looked in that store?

The most embarrassing thing that happened, was at work when one day, I was walking down the hall and dropped a full cup of coffee which not only spilled everywhere, but shattered everywhere.  Luckily, a kind boy helped me to quickly clean up the mess before anyone got hurt.

Infographic from Nursing School Hub

Infographic by Dr. Daniel Cameron

A Pet Peeve

I was more and more convinced now that I had Lyme disease and not something like arthritis or cancer.  Only Lyme presents such bizarre symptoms.  If only I didn't have to wait for the Lyme doctor to prescribe antibiotics.  I had heard about people buying medicine in Canada without a prescription on the internet.  I decided to look into that option.  There were plenty of online pharmacies to choose from there.  Which ones were legitimate and were scam artists ripping people off?  I tried ordering some doxycycline.  They wouldn't accept U.S.  credit cards.  I cancelled my order.  I decided it is too risky.

Then one day I was reading a blog about saving money, living well on less, and being frugal.  The author was describing how she had treated her dog with some powdered antibiotics that she had purchased for around $5.00 from a farm supply store.  The antibiotics were actually designed to treat swine, sheep, or cattle.  The antibiotics were similar to doxycycline used to treat Lyme.

I am not proud of what I did next.  I went to a farm supply store in a rural area just outside of town.  I asked the clerk if they had any animal antibiotics.  She asked, "What do you want them for?"  I hesitated.  "I want them for my dog."  She showed me the different types.  I selected the type described in the blog.  It had a chart showing pounds and the correct dosage per pound.  It could be mixed with water.  The bag was large and would last a long time.  I was going to treat myself, if no one else would.  This is probably illegal or something and I hoped that no one would find out what I was doing.  It just showed how desperate that I had become to get well. I drove home and took my first dose.

A New Low

I spent a lot of time in bed trying to rest and recover my strength.  Out of boredom, I spent a lot of time on my laptop reading various posts and blogs about anything and everything.  Money was getting tight from all of the medical tests, appointments to specialists, and prescriptions.  I was tested by a neurologist, an infectious disease doctor, a chiropractor, two rheumatologists, a sports medicine doctor, several clinic doctors, and an orthopedist for my broken arm.  Then there were the trips to the physical and occupational therapists.  I had x-rays, MRIs, neurological tests, a colonoscopy, blood work, and more.  I had a thick file folder of tests.  Some of the doctors wanted to repeat tests that had already been run.  

At my annual mammography appointment, I was told that I had a vary large mass on my left breast.  The doctors were very concerned.  I would need a repeat, then an ultrasound, a needle biopsy, and then a  tissue biopsy.  I fretted about that last one.  If it is cancer, wouldn't cutting a biopsy cause it to spread?  I shared my concern with my doctor.  He said, "Honestly, cutting into it could cause it to spread."  

During the ultrasound, the young doctor numbed the area and put a needle into the darken area.  I could visually see it go into the spot on the ultrasound screen.  As soon as the needle penetrated the area, liquid swirled around the needle.  I said, "What is that?  It's liquid, a cyst!"  The doctor replied, "It's debris inside of a cyst.  No need to do a tissue biopsy."  He drew out the liquid and the large cyst collapsed.  I had no doubt in my mind that this had to be the Lyme disease that was causing this.  Arthritis doesn't cause cysts to form in your body.  

This reminded me of something else that had happened early on.  When I had visited a sports medicine doctor, I was told that I had some sort of muscle, spine, or ligament injury.  I decided on my own, to visit a chiropractor near my house.  The first thing that he did was to take some x-rays of my swollen, stiff neck.  When he got the x-rays back.  He said, "I need to show you something."  He pointed to a large dark circle about the size of a golf ball.  "I don't have any idea what that is."  He said that he would send the results to a radiologist who would read the results.  He would call me later.  I could see the concern on his face.

A few days later, I had the results:  A cyst on my spleen.

Getting Lyme Literate

Even though my dentist doubted that I had Lyme disease,  I began to think that perhaps I did have it.  At this point, my Rheumatologist ran tests a genetic test to see if I had a genetic defect for arthritis.  The results came back negative.  He seemed puzzled.  He said, "you shouldn't even have this."  I thought to myself, "but why am I being treated for this then?  Why are we pretending that I have Rheumatoid arthritis, when I don't?"  

That evening, I started to revisit the idea that I could have Lyme disease.  I looked up various web pages that described the symptoms.  I looked like someone who had Lyme.  Even the pictures on the Center for Disease Control looked just like my legs.  I wrote to a Lyme disease support group, asking them if there were any Lyme literate doctors in my area.  I put that thought in the back of my mind and went to sleep.

The next day, I woke up, went straight to the bathroom, and flushed all of the methotrexate that I had been taking for the arthritis down the toilet.  My hair was falling out, it was destroying my stomach,  I didn't look like the same person, and I was getting worse. I cancelled my next appointment with the arthritis doctor.  

A few days later,  I received an email from the Lyme disease support group.  They did have the name of a Lyme disease doctor in a town just north of Indianapolis, just a half hour away.  When I called, however, the receptionist said that the doctor was very busy and would not be accepting any new patients until January.  I would have to call back in October to make my first appointment for January.  By that time, it was September and I was facing another cold, painful winter.  What else could I do but agree?

Doubt It

I was truly at the end of my rope.  I had been sick for over two years.  I didn't know how much longer that I could continue to work like this.  But I needed to work for the health insurance.  The treatments for arthritis were very expensive.  I was going to the best rheumatologist  in the city, but I wasn't getting any better.  In fact, the arthritis had spread to many joints in my body.  My arms, legs, jaw, and abdomen were swollen.

I started researching the causes of arthritis.  I read that some people think that it is caused by a hidden infection.  One doctor has a theory that tooth decay may be the hidden cause.  After reading that article on the Internet, I decided to have my dentist look over my teeth.  After all, my left jaw was hurting me, along with intermittent pain radiating out of my ear.

My dentist looked over my teeth and declared my mouth and gums very healthy for someone my age.  I told him that I had been diagnosed with arthritis.  I told him that I had also tested positive for Lyme disease.  He said that Lyme disease is extremely rare and that I probably didn't have it.  My teeth were not the source of all of the extreme inflammation either.

Getting Worked Over

It was becoming increasingly difficult to go to work.  I was averaging about two hours of sleep a night.  I dreaded bedtime, because sleeping meant that I had to straighten my swollen legs.  The weight of a blanket or sheet was painful.  I couldn't stand the pressure.  My skin looked stretched and shiny.  I couldn't just sleep without blankets in the winter time, either, because I had developed extreme sensitivity to the cold.  

I had to gulp down three cups of coffee just to get going in the morning. I could not get up from a seated position without pushing up with both arms, which wasn't easy, since one was broken and the other was in a cast.  This made using the bathroom interesting.   I needed help to get dressed and put on my coat.   Opening normal door knobs was impossible.  My wrists had swollen, too.  I had strange knots that would pop up suddenly and then disappear in a day or two, then suddenly reappear.  I especially had trouble with the door knob that led into the garage.  I made Tom change it to a lever type knob.  Unless he was home when I left for work, I was practically trapped in the house.  

Driving a car hurt my wrists even with braces on them.  My legs hurt sitting in the car for the thirteen mile commute.  I had to hobble into work like an eighty-year old lady by the time I got there.  I must have looked pathetic and miserable.  I was swollen from taking too much prednisone and getting steroid shots.  

At this point,  I had a class with two difficult students with many problems.  One week, both of these kids had acted out.  I emailed the assistant principle to document their behavior.  Several other teachers had complained that these two students had been disrupting their classes as well.  

The next morning, when I opened my computer, I received a reply from the assistant principle that she wanted to talk to me in her office immediately.  I went down to her office, and was also met by the principle.  They both had clip boards and were taking notes.  I thought at first, that they were going to give me some help and suggestions for dealing with the misbehavior of the two kids in question.  Instead, the assistant principle was writing me up for emailing her twice in one week.  I have actually never emailed her about any students before.  I pointed this out to her.  I told them both that I thought that I deserved and expected their support.  That is what they were supposed to do.  Instead I was grilled about my motive for emailing her.  I replied that I don't recall ever asking her for help before, and we had worked together for several years.  She basically told me that I had a bad attitude and looked unhappy with my job.  

I told her that I was very ill and that I was seeing a doctor who was trying to properly diagnose a very painful condition that made it hard to walk.  I was told that I may have Lyme disease, cancer, or even rheumatoid arthritis.   She continued to repeat her questions about my motive for emailing her.  I replied that I just wanted to document behavior.  I then burst into tears.  The principal was sitting there, not saying much, but nodding and backing up her comments.  He was writing down every thing that was said on a legal pad.  I stood up and said, "I have done nothing wrong.  You are trying to make it sound like I did something sinister.  I have done nothing wrong.  Thanks for a wonderful start to my day."  I turned out and left the office.  Thank God, it was a Friday.  I  would have the weekend to recover.  I felt as though I was about to lose my job because of my illness.

That Monday morning, the assistant principal called me into her office again.  I was afraid that I was about to be fired.  Instead, she apologized.