11 Rant: Why Dealing With Lyme Disease Drives Me Crazy. (Part 1)

Note: The content that follows is part one of a personal rant and is atypical of most content as well as context covered by this blog. 

I've been meaning to write this entry for a long time.

Many attempts have been made before this - many which have been scrapped because they neither met my general standards for publication nor managed to convey what I wanted to express.

 But I have to get it off my chest because face it, I've been dealing with this condition and its complications for years now and every so once in a while I've gotta just let it all rip, Camp Other style.

Why Dealing With Lyme Disease Drives Me Crazy

Where do I even begin?

Let's start with the more obvious, from a patient's perspective.

1) Because the lack of early diagnosis and treatment occurred for something which should have been obvious to not only the first family doctor who saw me - but the second one. 

I had a textbook case of Lyme disease: EM rash, history of a tick bite, and symptoms consistent with a Lyme disease diagnosis. I knew the geographic location in which the tick had bitten me because I found the tick within a day of hiking in an endemic area. The state health department and university researchers knew it was an endemic area.

The index of suspicion should have been high, but I was treated dismissively and told that Lyme disease doesn't happen in my state or the area in which I'd been bitten.

Admittedly, I myself did not know how endemic the area was for Lyme disease until after I received my bite and went to my first doctor's appointment. It's after that point when I decided to look it up, and discovered the doctor had made a mistake. People are human and doctors are human and make mistakes, but for me this has been a very costly one - the doctor I saw should have known more about surveillance and epidemiology in the area than I did.

The second doctor had an opportunity to see my larger than 5 cm expanding rash and still thought I just had a sinus infection. When I brought up that I thought I may have Lyme disease, the doctor ran an ELISA -  but this testing was too early to show an antibody response. What the hell, I already had an expanding EM rash - I was treatable on that count alone. Again, a sign of ignorance about the disease, even from a basic IDSA/CDC/State health department point of view.

After having read many other patients' stories about having had a similar experience, I can only suggest that doctors need more education about tickborne diseases and to be more vigilant about immediate treatment as the risks of early treatment are far less than managing complications that come from disseminated and late stage infection.

 2) Because of the lack of a timely and accurate diagnosis and treatment by a family doctor, I ended up seeing an LLMD for diagnosis and treatment.

After my initial research of Lyme disease, of course I came across information about the controversy in Lyme disease and both information singing the praises of LLMDs and how they saved patients' lives as well as information condemning them for their overpriced fees, lack of taking insurance, rude support staff, difficulty in getting appointments, and unproven protocols. I heard both sides from patients. I also got to hear criticisms about LLMDs from some science writers and medical professionals about how their diagnostic and treatment methods were not well supported by science and that LLMDs were only out there to take advantage of the gullible.

I got an earful early on, believe me. But despite hearing the negative reports, I still found myself in the position of having to make my own decision as what to do next and soon, because I was so sick.

I had to do something. I could barely think straight at the time. I was so ill I could barely follow someone else's conversation. I could only read in very short spurts. I was exhausted, in pain, could not work, and could barely take care of myself.

I had to network with people and figure out what I was willing to do. I had to rely on others' suggestions and concerns more than I usually would simply because I had trouble thinking straight. It was rough going.

In time, I realized not all LLMDs were cut from the same cloth and I already knew why I was sick - so controversy or not, I was going to go where I knew someone would help me. If an LLMD was going to treat my Lyme disease and the doctors I'd seen at my supposedly highly rated clinic weren't, I was going to see an LLMD. Simple as that.

At the time, I didn't want to get involved in the controversy at all - even as I felt sympathy for everyone dealing with long term symptoms. I thought that as long as I was treating this infection early that I would be one of the lucky ones - I would take antibiotics for 3-4 weeks and not have to face persisting symptoms.

However... I was wrong. Only I didn't know it at the time. My infection disseminated fairly quickly early on and I was already sicker than others who had acute Lyme disease and received treatment early. I developed symptoms of a coinfection later on that I would not have known to look for or even suspect. The LLMD did suspect this coinfection, then ran tests - for which I was positive - and as a result, I was treated for it and my symptoms improved.

I am still in less pain than I used to be and some of my symptoms completely disappeared from this treatment, so I think there were measurable gains and seeing an LLMD for treatment was the right thing to do when I did it. I genuinely had Lyme disease to begin with - and if two other doctors were not treating it - then someone else damn well was going to treat it.

My question is why did I have to see an LLMD for all of this when a well-trained family doctor should have known from day one what was wrong with me and treat it back then?

Maybe in my case, weeks or a few months of not having treatment or having inappropriate treatment made all the difference in the world for my outcome. The earlier the better, they say. And I could have had that and sidestepped this mess had the family doctors I'd seen earlier on knew what they were looking at and got right on top of it.

3) Because for some reason, having a Lyme disease history is either not calculated into any new symptoms I present to most doctors (both family practice and emergency medicine) and each symptom set I experience is either attributed to something entirely new and separate - or I am told that there is nothing the doctors can do for me (not even palliatively).

Again, I see this response as a lack of education of the doctors in question. I think that doctors have to take into account that even if they themselves do not believe in a chronic infection model of Lyme disease which the Lyme disease patient community supports - that they need to at least consider that the patient in front of them with a history of Lyme disease may be suffering complications related to having had the infection, and to consider the possibility of a coinfection or relapse of a coinfection where symptoms appear to overlap.

If Babesia is a growing problem in our national blood supply and has killed people through transfusions, it seems important to me to rule out Babesia in patients whether they have a mild presentation or a serious one. The risk to everyone's general health is involved.

Sometimes I think it is not just a lack of education which prevents family doctors from dealing with Lyme disease patients. Sometimes it's a matter of fear of not having enough expertise and making a mistake, and not knowing to whom one should refer a patient. If family doctors were better trained to begin with, though, then they could gain that expertise themselves and be the front line for diagnosis and treatment as most patients expect them to be.

Other times, I think part of the issue is that some doctors have decided to overgeneralize about what they read from various medical journals, letters, and reviews, wherein the author states that at least half of those patients claiming they have chronic Lyme disease never had Lyme disease in the first place. Once having digested that nugget, the doctor then may go on to think that a patient who tells them they either have or have had Lyme disease that because it's at least a 50/50 chance the patient never had it in the first place that it is data not worth considering.

Given the growing number of documented Lyme disease cases reported to the CDC annually, I'd like to suggest to these doctors that they nip that thought in the bud and just look at each patient as an individual and consider that their Lyme disease history may play a role in their current symptom set. They don't even have to enter into the controversy to go there.

4) Because of the changing face of the medical profession and doctor-patient relationship in an era of managed care, anyone with a chronic or hard-to-define illness is getting shortchanged these days - and sadly, at times readily receiving a mental illness diagnosis when the evidence for one is weak at best (or at least not the primary cause of their symptoms). 

After reading many different patient forums - not only for Lyme disease, but for conditions like fibromyalgia and CFS/ME or even rare, orphan illnesses which most people do not know anything about - I've seen this happen time and time again: Doctors trying to nail down a diagnosis for a patient within that 10-15 minute appointment window, and when there seems to be "too much going on" for the patient, the immediate suggestion by the doctor is that the patient's condition could be psychological.

Now, I acknowledge that a number of physical symptoms are related to depression and anxiety, as well as chronic stress. And if one is suffering from these conditions, they need to be recognized for what they are and receive proper care. However, I think some doctors are too quick to make this judgment and need more time to listen to patients and create a list of non-psychological physical, endocrinological, infectious, and/or immunological disorders and conditions to test for first before referring patients to a therapist.

Or if the person is obviously psychologically ill, to at least consider a biological basis for that illness or that it may be contributing to it. There is no reason not to run tests while referring one for therapy just to deal with the frustrations of being ill, either - and a caring, compassionate doctor will know how to finesse the situation so that both physical and mental bases are covered without being dismissive towards their patients.

For what it's worth, my family doctor has not diagnosed me with a mental illness. I myself have sought out therapy for depression while dealing with illness - and of the two therapists I have seen, both have told me to keep talking to doctors because it's their assessment I am physically ill and disabled and any depression I have stems from my health - not the other way around.

The biggest problem I have had with being told "it's all in your head" came from ER departments who could not figure out what was wrong with me in the handful of hours that I was there.

5) My treatment has not led to a full recovery or even closer to a life where my symptoms are stabilized.

Some patients within the Lyme disease community have gone off on me for what I'm about to say, but it's an honest assessment about where I am: I have come to accept that I may never regain my former health again and be 100% cured of the symptoms I'm having.

I don't have any expectations that I can return to my old life and do what I used to do and have the same amount of energy I once did. Even if I could be assured of being cured now, there may still be residual damage in my body - plus I am getting older and my body has been deconditioned by years of nearly total sedentary living.

At times I have felt like I've been fed a false hope that I could recover 100% from treatment, because I have certainly tried a lot, above and beyond what the original IDSA Lyme disease treatment guidelines stated. I have not fully recovered, and it's already been several years since I was first infected.

While I do what I can within my limits to try to stretch and improve my health to the degree that I can, I'm aware that there is so much that isn't known about or understood about my condition that it doesn't seem unreasonable to me that I may not get back to my previous state of health before the tick bite.

About the best thing that has helped me was Mepron for Babesia. It helped take care of a number of the most debilitating symptoms I've experienced. But everything else has either resulted in temporary gain or made me feel so much sicker for a longer period of time - that for months at a time, I actually feel much better doing nothing at all.

This is not to say I will never try anything again. It's to say that I want more evidence that the next thing I try is going to make a positive difference and have a good idea of why and how it is going to make a difference. But it seems to me that as time goes on, I still have bad days and less bad days and occasional good ones regardless of what medications or antibiotics I'm taking.

My experience leads me to believe that I either have permanent damage or long term damage that will take years to heal - or that the proper treatment for my condition has yet to be discovered. This is one key reason why I think more research - particularly treatment trials - is important.

6) Because there is a lack of societal and institutional support for someone suffering from my condition, as well as the lack of a streamlined process for acknowledging and supporting how my condition disables me - a condition which should receive official recognition as a disability.

Mainstream medicine has societies for cancer research - multiple societies including ones for specific cancers. It has workshops and support groups for cancer patients. It has programs on nutrition and cooking for cancer patients on site at hospitals and clinics. There are large scale races for the cure and other fundraisers. There are conferences on cancer which some patients are invited to - and some not. And there are many oncologists and oncology staff members and therapists who specialize in dealing with the issues cancer patients face. So on an institutional level, the need for support and education for cancer patients is recognized and accommodated.

When it comes to other doctors' attitudes about oncologists, they do not envy their jobs and have respect for the difficult job they have to do. Being a family doctor, you are more likely going to see minor problems you can fix and not have to watch someone die of cancer before your eyes.  So there is a certain amount of personal and professional respect from many doctors towards oncologists just because of what they have to deal with on a daily basis.

From the perspective of someone who has had post treatment persisting symptoms of Lyme disease (however you name or characterize my condition) I have felt marginalized and that the kind of support I could use has been lacking.

There is nowhere near the infrastructure available for someone with my condition that there is for someone with cancer. If it weren't for some online forums, a few LLMDs, and a few organizations that bend over backwards to recognize that my condition is debilitating - there would not be anyone at all to acknowledge and validate my disability.

I deal with a condition where the doctors - LLMDs - who try to treat patients like me do not receive respect from a number of other doctors, some researchers, and some members of the media. And as patients we will continue to see these doctors not because we are gullible - but because they are actually trying to help us.

If those whom disrespect them have an issue with this, then instead of knocking the doctors who see us and the treatment we undergo, they should make more of an effort to provide patients with a helpful option under their care. We will vote with our feet if you have anything better to offer. And believe me, we are all such big mouths in the Lyme disease community that we would let everyone know if others' approach and treatments really helped us. Even if only symptomatically. Even if it wasn't a cure.

Now, admittedly, there are fewer people who suffer from my condition than who suffer from cancer. But even so, it seems that no matter how many or how few people suffer from a medical condition and/or disability, that there should be a certain baseline recognition, acceptance, and accommodation for that condition or disability. Not just from patient organizations that patients have had to put together from scratch - but from medical institutions, doctors associations, societies, and research groups.

There is something, though, that has troubled me about what makes post treatment Lyme disease (or as the IDSA puts it, "Post Lyme Disease Syndrome") different from other conditions (orphan, or of unknown etiology) that has made me wonder how it has come to be treated as it has been, historically:

Unlike other conditions where the cause is unknown and speculated about, mine does have the distinguishing characteristic of having been triggered by Lyme disease in some way. There is a clear issue of cause and effect here; of some sort of relationship which has already been defined in medical literature.

But people in my situation don't even have the benefit of having the label of "Post Lyme Disease Syndrome" holding significant meaning for them when they apply for disability - even though a number of us suffering with persisting symptoms would be considered to have this condition by some medical professionals.

In the Klempner trial, it was noticed that those most severely affected by this condition had a quality of life and functionality similar to patients with congestive heart failure. This statement was not made by an LLMD (for those whom have issues with an LLMD and may be dismissive about such statements) - this was a statement made by an academic researcher who studied patients suffering with my condition, whatever label you want to apply to it.

Somehow, it seems that whatever I have should be taken more seriously, and there should be more institutional and societal support for it. It shouldn't be a backbreaking effort to explain what ails me - with my medical history, test results, and clinical diagnosis, it should just be accepted as part of my reality and worked with, rather than denied and shrugged off.

Note: Minor edits for style made to this text January 28-29, 2011.

This marks the end of part one of my rant, Why Dealing With Lyme Disease Drives Me Crazy. Continue on to part 2 HERE.

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