CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diary by: joanneleon
"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. After taking care of a few other conditions, for four years things were clear enough to see that I had symptoms of Lyme disease. I had the symptoms for much longer than that, and had had two tick bites that never developed into a bulls eye rash, but other things complicated and clouded the situation. So it's likely that I have had Lyme for ten years at least (I realize now), but for this diary I'm focusing on the four years prior to diagnosis when I had been tested at least four times, and on what has happened since then.
Each time I was tested, among treatment for other various symptoms, a surgery that I had hoped would have improved my health, my doctor ordered the screening test, ELISA, which anyone who has any experience with chronic Lyme disease knows is horribly unreliable. Most 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 bullshit.
My main reason for writing this diary is, well first because someone asked me to do it :) but second, I want to return a favor.
In early 2009 I read a diary here on DailyKos. I can't find the diary now, but I do remember that there were at least two people there who were talking about Lyme disease, about the problems with testing and the problems in getting treated. Those people were Una Spenser and MsGrin. There may have been other people conversing on the subject as well, but my Lyme addled brain has forgotten those details so I apologize sincerely to anyone else who I may not be crediting properly. If not for them, and for the love of my life, John, and the doctors I finally found, I would most likely be dead right now. That's how sick I was two years ago. After I read that diary and the comments, and discussed the issue with those wonderful Kossacks, I told John about it. We were both deeply worried about my condition and baffled about what to do about it. He had suspected Lyme all along. But those tests kept coming back negative and we figured that four negative tests coudn't be wrong, and neither of us knew about the controversies surrounding Lyme disease.
I read the diary and comments to John and now we were both determined to find a solution. He had been doing some research on his own as well. We went back to my family doctor and told him what we had learned, and asked for his help. He's generally a very reasonable man, we had always gotten along well, he keeps up on things and is willing to listen to a patient's ideas and information. John was with me when he, in a fit of anger, told me that I did not have Lyme disease, and both of us were taken back by this uncharacteristic response.
After that, John set out to find a doctor with expertise in the field. Finding one was interesting. There is a certain secrecy around the whole thing. When you read the online boards, you'll find that you have to contact someone personally to get the names of doctors. Why? Because they are harassed by the medical authorities for treating Lyme disease. Most of them don't seem to take insurance anymore, or they take it in a limited way. Anyway we did find a doctor in Southeast Pennsylvania. I'll call him Dr A. We got an appointment and we went. I was still skeptical about all of this weirdness around treating Lyme. This doctor laid it all out, and gave his opinions 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 postitive. I thought this was crazy. John 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. Part of that was due to the fact that my doctor's receptionist was difficult to deal with and part of it was because by that point I was barely functional and was completely disorganized. This is one of the biggest problems with advanced Lyme disease. You can't do shit.
So by November, 2009, I had a PICC line inserted into my arm at my local imaging center. This was a bit scary. They were very professional and I was impressed, but they didn't attach the extension tube to the PICC line so I just had a tube coming out of my arm with a cap on it. I don't remember the details but somehow I was supposed to put this extention tube on. I removed the cap. Blood started spurting all over the place. I was scared to death. I think John was even more alarmed. We put the cap back on. It's not easy to manage this because the tube is above my elbow, so my left hand was useless and couldn't reach it. After a phone call to the critical care center that was managing my IV meds and nursing, we figured it out. The nurse came the next day and showed me the SASH (saline, antibiotic, saline, heparin) routine and I learned how to do IV 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 was dying, this much was clear to me. 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. And there were other reasons why my ties with my family were shaky at this time, even though we had always been very close in years past. Suffice it to say that abusive spouses, divorces and long term illnesses can do that. 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.
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, where John lives, and just across the river from where I live. 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. It was a great loss. He was expert in treating Lyme and coinfections, which I was suffering from in addition to Lyme itself. 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. I was well enough to perform in a Gilbert and Sullivan show last year.
Losing Dr B. was devastating from both a personal and medical perspective for me. It took a month or so to find another doctor that we felt comfortable with. I began seeing this new doctor last month. I'll call him Dr C. He is also in Southeastern Pennsylvania. He is continuing the IV abx treatment, and we're back to Rocephin. Dr B. had felt that we were nearing the end of the IV treatment and would soon switch to oral meds and then a maintenance treatment. I'm not sure if this new doctor will have the same opinion. I hope so. We can't afford the IV treatment for much longer and this last PICC line (my fourth) may not last much longer. I had lost some ground when I was between doctors for two months.
Before I finish, I'd like to leave you with one more bit of information related to Lyme disease that is related to something I've mentioned above but not given any more detail about.
Someone shared this story with me yesterday. I'll just excerpt it and leave it for you to consider.
Federal government stonewalls request for Lyme information; filmmakers submitted FOIA paperwork 4 years ago, CDC still won't come clean about its conflicts-of-interest
On June 26, 2007, we, the producers of the documentary, “Under Our Skin,” submitted a Freedom of Information Act (FOIA) request to investigate possible conflicts-of-interest of three Centers for Disease Control (CDC) employees who control public health policy for Lyme disease. Almost four years later, we’re still waiting for this information, and we’ve just learned that our request is among the ten oldest unfulfilled requests awaiting action at the CDC’s parent agency, the Department of Health and Human Services (HHS).
...
For the purposes of our documentary, this FOIA request is essential in answering some of the most puzzling questions surrounding Lyme disease — why has the CDC been endorsing an outdated symptom list and unreliable testing protocol on their website? Why has the CDC been underreporting Lyme cases for the last decade? Are these CDC employees really working in the interest of the tax-paying public or are they being influenced by hidden commercial influences?
...
Undaunted, we flew a crew to the Montana home of retired NIH Lyme disease expert, Willy Burgdorfer, Ph.D., M.D., the discoverer of the Lyme bacterium. While setting up the cameras, an NIH representative showed up uninvited, and said, “I’ve been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can’t talk about.”
http://www.lymedisease.org/...
So I don't have a happy ending (yet?) to give you here, but I hope that my story up until this point might prove to be useful to someone who has been struggling with their health, who might have Lyme and perhaps has been told they don't, or for some other reason. This isn't my best piece of writing as my thinking is not particularly clear today and the pain level is not what I would like it to be. (Is it ever?) So I hope it was cogent enough to be of use to someone. If it helps even one person, I will be satisfied. When I am well again, or at least well enough to function at a higher level, I am determined to help others and to become a Lyme activist. This has been hell.
There is so much more to my story, for instance, about what it's like to try to raise three children while you are seriously ill, and about how I no longer have health insurance after decades of having it, about losing a career to illness, and the medical costs of this have been overwhelming and have caused me to lose nearly everything. But all of that is too much for one diary, and probably too difficult for me to write about at this point anyway.
And, many of you know all about those kinds of things yourself from personal experience.
Here's to all of us, and to health.
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