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KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
"I know more about Lyme disease than any of the neurologists around here and you don't have Lyme disease!"

That is what I heard, emphatically, from my family doctor in 2009 after six years of deteriorating health and attempts to figure out what was causing my various symptoms and my decline.  

Growing up and through my thirties, I was always healthy and looking back now, incredibly productive.  I had three children, a successful career and a very full life.

About ten years ago, I had two two tick bites that never developed into a bulls eye rash.  So it's likely that I have had Lyme for ten years at least (I realize now).

There were layers of health problems to get through, several surgeries, some chronic conditions handled with medicine, but after those conditions were under control, about four years ago, things were finally clear enough to see that I had symptoms of Lyme disease.  

My doctor ordered the screening test, ELISA, which anyone who has any experience with chronic Lyme disease knows is horribly unreliable.  Many doctors will disagree with that and will say that Lyme disease is easily diagnosed and easily treated.  I will tell you from experience that this is not true.

In early 2009 I read a diary here on DailyKos and there were at least two people there who were talking about Lyme disease, about the problems with testing and the problems in getting treated.  If not for them, and for the love of my life, J, and the doctors I finally found, I would most likely be dead right now.  That's how sick I was two years ago.  I posted some comments with questions and received replies that were very helpful.  I read that diary and some of the comments to J.  We were both deeply worried about my condition and baffled about what to do about it.  He had suspected Lyme all along.  

I had been tested for Lyme four times over the previous four years.  Now we knew that the screening tests were unreliable and about the controversies surrounding Lyme disease.  

J was determined to find a solution and had been doing some research on his own as well, so the timing was right.  We went back to my family doctor and told him what we had learned, and asked for his help.  I had always had a very good and friendly working relationship with my family doctor, he was connected with a teaching hospital and kept up with things.  He always seemed frustrated with insurance companies and seemed fairly liberal and open minded.  But on the issue of Lyme disease, we hit a brick wall with him.  J was with me when he, in a fit of anger, very uncharacteristic for this doctor, told me that I did not have Lyme disease. Both of us were taken back by this and I still wonder about it.

After that, J set out to find a doctor with expertise in the field.   Finding one was interesting.  There is a certain secrecy around the whole thing.  Why?  Because doctors who treat chronic Lyme disease are harassed by the medical authorities.  Many don't seem to take insurance anymore, or they take it in a limited way.  

We did find a doctor in Southeast Pennsylvania. I'll call him Dr A. I was still skeptical about all of this weirdness around treating Lyme.  This doctor laid it all out, and gave information about why the tests are unreliable.  He said that, yes, I had Lyme disease and diagnosed me clinically based on my symptoms, and told me that he would test me periodically using not the screening test, but the more specific test, the Western blot.

The serological laboratory tests most widely available and employed are the Western blot and ELISA. A two-tiered protocol is recommended by the CDC: the sensitive ELISA test is performed first, and if it is positive or equivocal then the more specific Western blot is run.

http://en.wikipedia.org/...

He told me that it might not come back positive at first because I was actually too sick for the antibodies they test for to show up, but as I continued taking the oral meds he prescribed, he predicted that the tests would be positive.  I thought this was crazy.  J talked me into placing some trust in this doctor.  We kept going back.  The first Western blot came up with two positive bands.  But that's not Lyme disease, according to the CDC.  If I lived in Germany, the doctor told me, it would have been considered positive.  But not here.  The second test, six weeks later, came up with enough positive bands to be considered positive for Lyme, according to CDC standards.

I had not been bitten by a tick between the first test and the second (and numerous positive tests after that.) In fact, as far as I know, I hadn't been bitten since the first screening test four years before that.  But suddenly, voila, I did have Lyme disease, and the insurance company, when I still had health insurance, would now pay for 30 days of IV antibiotic treatment.

Yes, well it took a couple of months between the positive diagnosis and actually getting the IV treatment set up.  I still had health insurance then.  I had a PICC line inserted in my arm and a nurse came the next day and I learned how to do IV antibiotics treatments at home.

At this point, I had been bedridden, or sheeted, pillowed, sofa ridden really, since I couldn't walk up and down the steps without risking a fall, and without a lot of pain.  I knew then and I still know that I was dying.  This easy to diagnose and easy to treat Lyme disease had been killing me for some number of years and at that point it was close to getting the job done.  

I had little support from my family, even though in the past we had been very close.  Funny things can happen with families when you are very sick for a long, long time.   It's just too much damned trouble for people who are busy with their lives.  It's easy for them to forget about you, or to find ways to blame everyone but themselves for neglecting loved ones and treating them badly.  It's just the way it is.  I know now that I'm not the only one who has been through this.  Far from it.  But that's another story.

I saw some improvement in those first few weeks of IV Rocephin treatment.  I didn't fall.  The pain was slightly improved.  My brain fog lessened.  My mood improved.  The malarial symptoms were slightly improved. I was a little less tired and not sleeping quite as much. This was encouraging. I had gotten to the point where I'd be wiped out for a week at a time and was functioning at maybe 10%.  Now I was at perhaps 20%.

My month of treatment was up.  The critial care center and my doctor petitioned Aetna to continue the treatment.  Declined.  No more treatment for me, they said.  Why?  Because the (in my informed opinion, corrupt) IDSA treatment guidelines call for no more than 30 days of IV antibiotic treatment.

In 2006, Connecticut Attorney General Richard Blumenthal announced an antitrust investigation against the IDSA, accusing the IDSA Lyme disease panel of undisclosed conflicts of interest and of unduly dismissing alternative therapies and "chronic" Lyme disease.
http://en.wikipedia.org/...

We did not want my treatment to be interrupted.  We made arrangements to self-pay for another 30 days of treatment, and we continued.  Since I was responding to the IV antibiotic treatment, my doctor referred me to another Lyme specialist, an MD who also had a PhD in immunology and who was involved in research with the NIH.  He specialized in infusion treatments.  He was also in Southeastern Pennsylvania, an area where Lyme disease is rampant.  I'll call him Dr B.

I was in treatment with Dr B. from January until November of 2010, when he passed away.  I learned a lot from him.  The man was brilliant.  He was expert in treating Lyme and coinfections, which I was suffering from in addition to Lyme itself.  He was also a researcher with connections to the NIH.  He got me up to about 30-40% functional.  But the best thing was that I my brain function improved and that the malarial symptoms from a coinfection went away.  We had knocked that one out completely.

I met many people whose story was very similar to mine.  All of them know about the travesty of how Lyme disease is handled in this country.  I should also note that both Dr A and Dr B had Lyme disease themselves.  They knew of what they spoke, and treated.

Over that period of time, there were a lot of ups and downs.  IV abx treatment is not fun.  There are side effects and there are cycles of feeling worse than you did before.  Sometimes the pain from Lyme and coinfx are excruciating, bad enough to wake you up at night several times and to prevent you from getting back to sleep.  But at other times, I had glimpses of what it was like to feel well again.  I had periods of time when I saw the light at the end of the tunnel.  

Losing Dr B. was devastating.  It took about two months to find another doctor that we felt comfortable with.  I began seeing this new doctor several months ago.  I'll call him Dr C.  He is also in Southeastern Pennsylvania.  He is continuing the IV abx treatment supplemented by a different oral abx.  Dr B. had felt that we were nearing the end of the IV treatment.  I lost some ground when I was between doctors.  We continue with the IV treatments.  I hope to move to a maintenance treatment but my doctor is looking for a period of stability before doing that.  So far I am still on the Lyme rollercoaster where you improve, then lose ground.  Two steps forward, one step back. Very slow progress but for me, luckily, progress.  After reaching the advanced stages, some people don't get better at all and others die.

Some Lyme patients that I have met have told me that it takes two to three years of treatment to get better and your life back after you have reached the advanced stages of Lyme disease like I have.  Nobody told me that in the beginning of all of this.  I guess I am glad that they didn't but in another way I am not.  I just kept believing that I would be better in a few months.  I also did not apply for disability because I had heard the horror stories about it and I didn't have much faith that I would ever get it even though I was completely disabled.  But mostly, I thought I would be better by the time that I ever got disability coverage.  

Month after month has now turned into years and a horrendous outlay of money for medical costs.  We discussed the whole thing with Dr C. last week.  He did not paint a rosy picture but he will help us with his part of the application.  Lyme disease is not on the social security administration's impairment listing manual.  Dr. C. said that I would be turned down after the first application, that most do, and that I may be turned down after the second round.   I don't see that I have much choice anymore and so we begin.  I don't know if I will ever get well enough to try to restart my career or resume some other kind of work.  From a practical standpoint, I have to accept that I am disabled and that it might be a permanent situation.  It's a conflicting feeling because I am also working on getting well and believing that I will.

When I am well again, or at least well enough to function at a higher level, I am determined to help others and to do more for Lyme activism.  This has been hell.  I don't like writing about my personal life and I have not told you the half of it and I know that many of you reading this know what it is like to fall into a situation like this, especially when you are trying to raise children.  What I do know is that for people with advanced and chronic Lyme, it does not have to be so difficult.  Changes in the system could make things a lot better and a lot easier for a lot of people.

Here's to all of us, and to health.



Update:
Someone asked me in the comments about that diary in 2009 where I read about the difficulties and controversies with Lyme disease, the diary that led me to look for a Lyme specialist even though my tests were coming back negative.  I just found the first comment that led me on the path to the right treatment so I thought I would share it with you. Thank you MsGrin and DailyKos.  I'm not sure what would have happened had I not seen that diary.
What about the tests? (4+ / 0-)

I've been tested (by family doctor, some type of Lyme titer in a blood test) and it does not come up positive, but I have had all the symptoms for a long time -- years. I live in an area where Lyme is widespread and my house is in a wooded area.  Numerous people have told me that what I have sounds just like Lyme disease but if I do have it, I can't get it diagnosed.  I have had occasional improvements (a long story), and I wonder if there is a specialist in my area, but frankly, I'm hesitant to start with yet another doctor.

In looking for the source of my health issues, we  found a number of other problems along the way and they have been treated, sometimes requiring surgery.  With all of these different things mixed together, it was really tough to figure out what was wrong.  I'm just about ready to give up trying to figure this out, but can't function properly either, so it's a catch-22, and one that causes real hardship.  In addition to the constant pain and brain fog, I'm to the point where I have passed out, get migraines pretty frequently, and a few weeks ago fell flat on the ground walking out of my back door, for absolutely no reason.  

"The true measure of a man is how he treats someone who can do him absolutely no good." --Samuel Johnson

by joanneleon on Mon May 04, 2009 at 07:49:44 PM EDT
http://www.dailykos.com/...

Originally posted to KosAbility on Wed Jul 13, 2011 at 02:00 PM PDT.

Also republished by Lyme Disease Awareness.

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