All she lost: My sister's battle with Lyme disease

[Teegate]

This is an interesting article with photo's of the bulls eye that one would see if they were bit by a deer tick. If you have time you may want to read it all. Some of the symptoms of Lyme disease are devastating.


After a decade of unbearable side effects, she decided to end her life


http://www.msnbc.msn.com/id/30725967/


Guy

 

[46er]

It is a tough disease to live with. A friend living in Delaware has it, the hardest thing is getting it diagnosed and doc's that know how to treat it. She went to many doc's until she found someone that could help. Such a small thing causing such huge problems.

http://www.lymediseaseassociation.org/index.html

 

[RednekF350]

Very sobering article.
I have a friend who made it back from some of the advanced stages.
The biggest problem for him was the early misdiagnoses.
Thanks for posting this Guy.

 

[pinelandpaddler]

That is a sad story.

Has anyone here ever taken antibiotics for a tick-born disease? I would have, but I couldn't find a doctor to prescribe them to me. I've been bitten by ticks hundreds of times, and some of them were deer ticks. When I developed the bull's eye rash after having been bitten by a deer tick a few years ago, I went to the doctor to request antibiotics. I had other symptoms of Lyme disease, including fatigue and slight joint pain, and considering that I've been bitten so many times over the years, I was pretty sure I had it. The doctor said that I would have to get tested first. Knowing that these tests are not all that accurate, I decided to spend the $500 on the test anyway (no health insurance). The results were negative, but I told my doctor I wanted the antibiotics anyway. He refused to prescribe them to me, saying that he is not that "liberal".

 

[ecampbell]

That is a sad story.

Has anyone here ever taken antibiotics for a tick-born disease? I would have, but I couldn't find a doctor to prescribe them to me. I've been bitten by ticks hundreds of times, and some of them were deer ticks. When I developed the bull's eye rash after having been bitten by a deer tick a few years ago, I went to the doctor to request antibiotics. I had other symptoms of Lyme disease, including fatigue and slight joint pain, and considering that I've been bitten so many times over the years, I was pretty sure I had it. The doctor said that I would have to get tested first. Knowing that these tests are not all that accurate, I decided to spend the $500 on the test anyway (no health insurance). The results were negative, but I told my doctor I wanted the antibiotics anyway. He refused to prescribe them to me, saying that he is not that "liberal".

Yes Gabe I have. Here’s the story. I was infected with Lyme from June to December 2000, maybe longer but that’s the time I was miserable. My doctor didn’t do much of anything except put me on 2400 mg of Ibuprofen a day until mid July. Then after a big argument “You can’t just do nothing !!!” he broke down and ordered some tests. No I didn’t have a rash. My tests came back positive for Lyme, Babeiosis and Ehrlichiosis.
http://familydoctor.org/online/famdocen/home/common/infections/common/bacterial/056.html
http://familydoctor.org/online/famdocen/home/common/infections/common/parasitic/689.html
I was given doxycycline for a month but still felt bad. After a month my hands were permanently swollen and my left shoulder froze (adhesive capsulitis). My right hip was partially frozen. I was sent to rheumatologists looking for weird auto immune diseases. Finally I went to an infectious disease specialist who said the Doxy fixed the Ehrlichiosis but he felt I still had Lyme. I started a 28 day treatment of 2 grams of rocephin a day through a PICC line.
. http://www.webmd.com/drugs/drug-9768-Rocephin+IV.aspx?drugid=9768&drugname=Rocephin+IV
http://picclinenursing.com/picc_why.html

The specialist explained that Rocephin gets to where the bugs hide, across the brain barrier and into the bone marrow. I believe I am Lyme free but my shoulder and hip still hurt. That’s why I have trouble hiking over blow downs with you.
Another test they did every week is the SED rate. Before treatment mine was 80,after treatment it was 5.
http://www.nlm.nih.gov/medlineplus/ency/article/003638.htm
Babeiosis is a chronic disease similar to Malaria. I haven’t had a bad sweat since Aug 2002, so fatigued I would just curl up and the sweat was so bad if I shook my head I would splatter the walls. It didn't last long and I was never treated for it

I got bit by a tick yesterday.

Ed

 

[Sue Gremlin]

Oh man, Ed. That's a scary story. You must have a very strong constitution to have survived all of those at once. Ticks are such bastards that they can be infected with multiple pathogens at once.

Did you save the tick that bit you? Might not be a bad idea to send it off.

That story is so heartbreaking. The first time I got Lyme disease, my doctor told me that I "read too much". He was suitably embarrassed later on when I showed him my diagnostic tests.

Be careful out there this summer, you guys.

 

[piker56]

What a sad story. After reading stories like this I feel very fortunate to have had the doctor I had when I was diagnosed with Lymes in 1990. And yes, everyone please be careful in the woods.
Greg

 

[woodjin]

That is a sad story.

Has anyone here ever taken antibiotics for a tick-born disease? I would have, but I couldn't find a doctor to prescribe them to me. I've been bitten by ticks hundreds of times, and some of them were deer ticks. When I developed the bull's eye rash after having been bitten by a deer tick a few years ago, I went to the doctor to request antibiotics. I had other symptoms of Lyme disease, including fatigue and slight joint pain, and considering that I've been bitten so many times over the years, I was pretty sure I had it. The doctor said that I would have to get tested first. Knowing that these tests are not all that accurate, I decided to spend the $500 on the test anyway (no health insurance). The results were negative, but I told my doctor I wanted the antibiotics anyway. He refused to prescribe them to me, saying that he is not that "liberal".

I assume you recovered okay and were in fact negitive. I am surprised the doctor did not prescribe anti-biotics. My experience has been that anti-biotics are prescribed often, even for precautionary reasons (I am currently on antibiotics due to sore throat type symptoms). When i was a little kid my doctor used to give me anti-biotics constantly. It made my immune system very week in my late childhood. My immune system has improved dramatically in my adulthood.

Jeff

 

[pinelandpaddler]

I assume you recovered okay and were in fact negitive.

I really don't know, Jeff. I guess I'll have to wait and see.

 

[subkron]

My son, just turned 17, has had Lyme for almost 4 years now. He has neurologic involvement (vision, headaches, trouble focusing - ie. brain fog) which has kept him out of school and requiring tutors to come to the house to keep his education going. He has had (like Ed) received IV antibiotics a number of times via a PICC line. He is almost always on oral antibiotics and for the past year or so has been receiving monthly infusions of IvIG to help his immune system. We live in NJ but have to travel to Connecticut for a doc that is able to treat him aggressively.

The test is extremely inaccurate & the bull's eye rash appears in less than 50% of bites. If you suspect a deer tick bite, find a doc who will give you the antibiotics as soon as possible.

Most important that I can't stress enough - stay educated (see 46er's link), use protection and check after outings.

The disease left untreated is devastating.

 

[Teegate]

What was your sons first symptoms, and why do you have to go to Connecticut? Is the treatment here in NJ that far behind?

I am sorry about your sons problems.


Guy

 

[46er]

We live in NJ but have to travel to Connecticut for a doc that is able to treat him aggressively.

Have you tried Columbia U in Manhattan? It is the first academic research center focused specifically on Lyme disease. From what I hear they are cutting edge in dealing with Lyme.

http://http://www.columbia-lyme.org/index.html

 

[subkron]

Guy,
I'll try to keep this short...
He initially had some stomach pains and pains in arms that would come and go. He also had some sleep issues and a slight fever that would also be intermittent. Being active and in puberty many of these things were initially attributed to just growing pains. A few months after the initial symptoms he became very sick (flu-like symptoms) and we took him the peds doc who basically said wait it out. Nothing much changed, we started doing research and though it may be Lyme. Went back, doc reluctantly did Lyme test - the numbers were way, way high. Looking back he probably had been bit months earlier and he was fighting it off. The sudden onset was most likely from another bite since he camped in a grassy field w/Boys scouts just a few weeks before he crashed.

The symptoms persisted and we saw signs of more sleep issues, schoolwork dropping, unable to concentrate, memory loss, etc. We saw many docs here in NJ and in PA including infectious disease docs at Childrens Hostipal. They told us no such thing as chronic Lyme, said it was in his head, and were literally mad at us for bringing him there. What an eye opener that was.

The traditional way to treat is with 14 days of antibiotics and perhaps up to 28 days. There are literally thousands of Lyme patients where this did not work, my son is one of them. There are physicians who will treat longer, but going against "mainstream" is a problem for their practices. He presently sees a doc who is considered to be the top pediatric Lyme literate doc in the US.

I would highly recommend seeing the documentary entitled "Under Our Skin" from Open Eye pictures. Came out last year and gives pretty good insight to the disease and how it is (or is not handled) in the US. This link has a trailer and you can see if there are screenings in the area:
http://www.underourskin.com/

My son's issues were written up in The Burlington County Times and it still has some internet links to the article, here's one of them:

http://sci.tech-archive.net/Archive/sci.med.diseases.lyme/2007-05/msg00486.html

Hope this helps, it is quite a difficult disease to identify, treat, and live with.

46er,
We've spoken with the head of the clinic, Dr.Fallon. His organization is conducting reseach but not actively treating patients. We were also hampered in treatment since he is not an adult.

 

[Teegate]

Thank you for the links and info.

I always worry about Jessica getting this, since she is so petite as it is. We have a routine to do our best at catching them early, and are constantly trying to improve it. Our weakest link I believe is my car, which routinely has them coming out of nowhere the next day on my way to work or whenever.


Guy

 

[46er]

Our weakest link I believe is my car, which routinely has them coming out of nowhere the next day on my way to work or whenever.


Guy

I sprayed the carpets and seats in the truck with permethrin. Since I never wash the interior, it should last forever I hate the feeling of one crawling up my neck while I'm driving.

 

[jokerman]

This story is very sad and I feel lucky to have not have had those types of symptoms. I got Lyme in the early 1980's, before I remember ever hearing about the disease. I only know this now because I remember having 2 rashes on my legs that looked like cigarette burns and my Mother accused me of smoking. Then they grew to look like cigar burns. They went away and we just forgot about it. When I was 19, I was having back problems and I was always tired. My Mother finally heard about Lyme and I got tested. The first test was negative and then on a second test I was diagnosed with, at the time, the second highest "titer" on record (accordingto my Dr.). I had a doctor who treated me with high doses of antibiotic (Suprax) and then my insurance ran out and so did the treatment. Since that time, I have ignored it and I feel I have been in some type of long-term remission because I don't have any severe symptoms. I imagine it comes and goes in my system and does damage as it will, but that is how it is.

As travellers of the Pines, everyone here is at abnormally high risk since there are more ticks in the Pines I think than anywhere else. I wish they would spray sevin throughout every couple of years and give us a break from it!

 

[46er]

As travellers of the Pines, everyone here is at abnormally high risk since there are more ticks in the Pines I think than anywhere else. I wish they would spray sevin throughout every couple of years and give us a break from it!

I can certainly sympathize with anyone that suffers from Lyme, but indescriminate spraying of insecticides is not the solution. Most of the bird restoration efforts, such as the Bald Eagle, Osprey and Peregrin Falcon, in this state and others happened due to the effects of activities such as that. If you haven't, you might want to take a read of 'Silent Spring' by Rachel Carson.

 

[ecampbell]

I wish they would spray sevin throughout every couple of years and give us a break from it!

I often wondered why in my youth (1950's) we didn't get ticks. Maybe the frequent fires helped. Controled burns might also. We might have broken the rythm of the pines by being fire phobic, just a thought.

 

[Teegate]

I often wondered why in my youth (1950's) we didn't get ticks. Maybe the frequent fires helped. Controled burns might also. We might have broken the rythm of the pines by being fire phobic, just a thought.

I think the main reason is when you and I were kids we had winters where the temperature routinely went below 5 or 10 degree for extended periods which I believe kills many of them that are not protected under vegetation properly. Then again, it could have been the chemicals.


Guy

 

[Boyd]

If you haven't, you might want to take a read of 'Silent Spring' by Rachel Carson.

Also do a little googling on that book. Recently it has become rather controversial. Some people feel it has led to policies which have caused many deaths from malaria and done more harm to the environment over the years. I have not really followed this in any depth myself though and don't have an opinion.

I think the main reason is when you and I were kids we had winters where the temperature routinely went below 5 or 10 degree for extended periods

If you want to test this theory, look at the graphs from your childhood years here: http://www.fi.edu/weather/data2/ I looked real quick at the period between 1950-1960 and appeared there were hardly any days where the temperature even hit 5 degrees, let alone stayed that low for an extended period. But then there was 1961 with a real deep-freeze at the end of January: http://www.fi.edu/weather/data2/1961.gif 1963 was another cold spell.