My Diagnosis Story

One of my DailyKos Lyme Disease Awareness cohorts had the wonderful idea to seek out and publish the stories of how DailyKos members were diagnosed with Lyme Disease. Of course, I was to be included. When she asked me, I thought, "Oh that's easy. I must have written that up on my blog. I can just give a copy of that." Only, I hadn't. So, as part of the personal context to my writings here, I will paste what I submitted:

I had been tired alot, but I thought that was to be expected, as a business owner and mother of a young child. However, by the summer of 2005, I knew something was wrong. I had purposefully structured my schedule to make sure I was getting rest for the past 6 months and still, I was profoundly tired. Moreover, I was waking to powerful burning/tingling feelings in my hands and feet and lips. My early thoughts were that I had been poisoned, as I had had similar feelings with MSG poisoning years ago. I was also experiencing cognitive changes. Where I had always been a compulsively organized person, I couldn't keep an organizational system going and my "to-do" list was falling apart. I was forgetting very important things and losing things all the time. Me. The person who had the same pair of sunglasses for 12 years. I think I'd had my keychain for about 20. Those were gone. And my constantly organized house was a mess.

I became very concerned when I started having so much pain in my feet and knees and hips that I couldn't walk. When I woke up one morning unable to see - it was as if I were looking at the world through a wall of rushing water - for a couple of hours, I knew it was time to do something. Not inclined to go to the doctor (hadn't seen one in 15 years), I went to my acupuncturist. After a couple of visits, he gave me a clear directive, "you have Lyme disease. Go to a doctor and get antibiotics." My acupuncturist who loathes antibiotics was telling me to go get them. We'd known each other for about 12 years, so I took him seriously. In August of 2005, I had an appointment at a local clinic. Here's what ensued:

* Tested negative for Lyme in August 2005
* Was sent to a neurologist in Feb 2006, hospitalized, then told it was just stress
* Went to a recommended doctor in Spring '06, who diagnosed me with "chronic heavy metal poisoning"
* after 9 months of chelation, was getting worse - more debilitating pain and weird cognitive episodes of profound confusion doing common activities, getting lost in my own neighborhood, unable to recognize friends
* Spring of '07 was told by PCP that I was a psychiatric case
* Summer of '07, was informed by acupuncturist of 55% inaccuracy of Lyme test
* Aug '07, paid $1,000 out of pocket for more tests, which came back definitively positive for Lyme
* Tried oral antibiotics for 6 months, but couldn't tolerate them.
* Moved to bicillin injections in May '08. Saw some improvement
* Was retroactively denied the bicillin by my insurance company in July '09

In April of 2009 I tested positive for two auto-immune disorders - Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Dysautonomia, which explained why I wasn't responding well enough to the antibiotics (tests I would not have gotten if it weren't for  ellinorianne and the amazing community of dKos). I needed a much more serious treatment to get my immune system functioning, something called intravenous immunoglobulin (IvIg). IvIg costs anywhere from $4,000 to $17,000 per treatment. I needed to have it 4 times a month for at least 9 months and possibly years. This wasn't going to happen unless insurance covered it. Insurance wouldn't cover it unless I found an in-network neurologist to confirm the diagnosis and issue the orders. Given that the etiology of my diagnoses was Lyme, that proved challenging. Doctors in Massachusetts run screaming from Lyme patients. It is a particularly hostile state to docs who try to treat Lyme patients with anything more than 4 weeks of antibiotics. Though CIDP can be a stand alone diagnosis and the well-established treatment is IvIg, every doctor wanted to see my entire history and couldn't look past the Lyme Disease implications. Finally, I found one who would see me, only she had her own health problems. I was scheduled to see her in September of 09, but that was delayed until February of 2010.

Since then, a change from HMO to PPO has meant that my out-of-network neurologist is now recognized by the insurance company. I have had 4 treatments of IvIg so far. The first real ray of hope in 4.5 years. And, I'm a lucky one.

Been Bitten by a Tick? Prevent Lyme!

cross-post from DailyKos:

We've discussed how to best avoid tick bites and today we'll discuss what to do if you been bitten by a tick.

How do you know if you've been bitten by tick? The most obvious case is that you've found a tick attached to you or someone you know. It is most often cited that the tick must be attached 36 hours for transmission of Lyme to occur, but it is possible for transmission to occur more rapidly. The first thing you need to do is remove the tick. This has to be done properly, to ensure that you really do remove the entire tick. Luckily, we have Dr. Oz to demonstrate the proper method:


   

 
Another possibility is that you see a bite, but the tick is no longer attached. How do you know if it's a tick bite? A few things to look for:

1. Is it a single bite or a series of bites? With ticks, there is usually just a single bite.

2. Did you think, "this might be a spider bite?" This is one of the most common mistakes. If you think its a spider bite, reconsider.

2. Is there a rash? Not a welt - where the skin is raised but not red, a rash where the skin is red. A few things about the Lyme rash from the Columbia Lyme and Tick-Borne Disease Research Center:

This rash is most often circular with a clear edge, but oblong and other shaped rashes may occur as well in response to the tick bite. This rash is known as erythema migrans or EM. This rash usually starts about 3-30 days after the tick bite. Sometimes this rash is mistaken as a "spider bite". It is called "migrans" because it grows in size, gradually expanding over several days to greater than 2 inches across; some rashes can cover very large areas, such as an entire back. If the center of the rash clears, the rash may take on a bull's-eye appearance.  The rash is usually not itchy or painful. Sometimes, other rashes occur in other parts of the body far away from the initial tick bite. This is because the spirochete gets transmitted quite rapidly in the bloodstream after the initial tick bite. Wherever the blood goes, there too will the Borrelia spirochete travel.

There are some strong myths about the rash associated with Lyme, so I'm going to reiterate a few of the points made here:

1. The rash may not be circular

2. You can get the rash in more than one location, even with one bite

3. The rash is not itchy or painful.

4. The rash can appear several days after the initial bite.

One of the biggest myths about Lyme is that you have to have had this rash to have a case of Lyme Disease. If you read further up in the page from Columbia, they say this:

In about 60-70% of cases, a rash may develop at the site of the tick bite.

That is, 30%-40% of patients do NOT get the rash.

So, the rash is a fairly definitive sign, but never think you're out of the woods just because you don't see the rash.

A simple tick bite might look like this:


A bite with a "bull's eye" rash might look like this:


Another type of tick bite rash might look like this:


Sometimes it can even look like a bruise:


You can see, there is a wide variety of tick bite expressions. So, if you've been outside near any tall grasses, wood piles, or trees - it doesn't take much, as the ticks we most commonly acquire are carried by birds and mice and other small animals - and you see a bite which looks like any of these, you should be considering the possibility of a tick.

To be clear: Lyme Disease is now reported in all 50 states. You do not have to be in the countryside to be at risk. I acquired Lyme Disease inside Boston. Mostly likely at a nearby park, but could have been in my backyard. I know children in the neighborhood are getting it without leaving their yard.

Ok. You think its a tick bite. What now?

Go. To. A. Doctor.

Here's where it can get a bit tricky. Doctors are not necessarily well-educated about Lyme. In fact, there is lots of mis-education going on. So, you may have to insist on what you need. Frankly, you may have to go in armed with information (pdf) and you will need to have formed your own opinion about what to do. Why? Because the range of advice you can get from a doctors office is from: "don't worry about it" to "don't do anything unless we get a positive ELISA test result" to "take 1 dose of doxycycline and you'll be fine" to "its best to take a prophylactic course of 30 days of antibiotics and to continue testing."

### Opinion Alert ###
Here's where we move from me simply sharing info to me citing my own opinions based on my own experiences. Please read this with that in mind and the understanding that I am not a doctor and have never played one on television. I did play doctor as a child, but I'm sure that doesn't give me any credentials, either. ;-)  I simply have had to face all of this for a long time and have become as well-educated as I can.

How do you decide what's right for you? I don't know. I can tell you how I came to my conclusions and, perhaps, others will tell you why they have their opinion on the matter. I have a long post on my BostonLyme blog about this, which I'll just summarize here with few links for your perusal:
First and foremost, in my mind, is that you need to do everything you can to avoid the very devastating possibility of acquiring "late disseminated" or "neurologic" Lyme. Just read the description, noting that "this can occur in a matter of days":

If not caught early, the infection may then spread to many other parts of the body.  This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the  muscles and joints (causing migrating swelling, tenderness, and/or pain).    The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling.

For me, the risks of Lyme far outweigh the risks of 4 weeks of antibiotics.
Because this thing can disseminate so quickly, it doesn't make sense to me to wait for test results. Here, I'll quote from my blog about the problem with waiting for tests:

The initial screening test for Lyme, used quite universally, is called the ELISA. The ELISA is known to be inaccurate up to 55% of the time.(1) That is, it only correctly determines whether Lyme antibodies are present 45% of the time. At least 35% of the patients told that they do not have Lyme Disease because their ELISA test came back negative, actually do have Lyme Disease. This is called a false negative. That is to say, that the ELISA will miss over 1/3 of the cases.
Additionally, our bodies do not produce enough antibodies to register on an ELISA screen for up to eight weeks after the onset of infection. So, to be sure that you have the best chance of an accurate test you must wait 8 weeks.

Do you want to rely on a test which is 55% inaccurate? Do you want to wait 8 weeks, given how quickly this disease can spread to something much more difficult to treat?

There is a lot more to say on the topics of testing, mis-education and the challenges for patients when they have to determine for themselves who to trust on such an technical matter. Lyme Disease is a complex topic in and of itself because there are different strains. It is further complicated by the prevalence of co-infections. Those docs that point to research citing that Lyme is cured in 4 weeks, are pointing to very flawed studies that do not include patients with delayed diagnosis or co-infections, for instance. The studies don't do long-term follow-up of the patients. Nor do they look at multiple medicines or the more than 100 strains of borrelia. The picture of what research has and hasn't been done gets muddied by the fact that medicine is a for-profit industry.

I wish it were more straightforward. For me, the bottom line is that acquiring Lyme is not worth any risk. Whenever I know of anyone who has been bitten I arm them with information and tell them this:

1. Demand 4 weeks of antibiotics as a prophylactic

2. Demand that you get both the ELISA and the Western Blot test

3. Demand detailed results of the tests, not just the lab's overall assessment

4. If you are still symptomatic after 4 weeks of antibiotics, demand more treatment.

5. If your doctor doesn't respect your input, find one that will.

Here are some links I offer up for more information:
International Lyme and Associated Diseases Society
California Lyme Disease Association
Lyme Neuroborreliosis Research Program
"Learn the Truth About Lyme"
PDF of letter challenging common prophylactic recommendations
Volkman Letter about evidence of persistence, unreliability of testing, blocking of good research and much more...  (pdf)

(1) Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State laboratory of hygiene/College of American Pathologists proficiency testing program. J Clin Microbiol 1997; 35: 537-543.

#IDSAFail

That's a "hashtag" on Twitter now. I don't know if it was used before, but I saw it fly into action last week after the IDSA (Infectious Disease Society of America) made this announcement:

After nearly two years, a special independent Review Panel has agreed that no changes need be made to IDSA’s 2006 Lyme disease guidelines at this time.

I'm slow getting to this due to momentous things happening for me, right now, however I can't let it pass.

I'd like to say I was shocked, but I wasn't.

I wasn't shocked because, from the beginning of their antitrust settlement  (link to PDF of the agreement is near the bottom of the page) with the CT Attorney General, they made it clear that they weren't taking the need to reconsider their position seriously. Though the Attorney General said this:

This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

the President of the IDSA said this:

IDSA's signing the agreement was not, as he alleges, an admission of guilt, but an effort to end a fruitless investigation that was costing our organization (and presumably Connecticut taxpayers) thousands of dollars.

Denial, denial, denial. All this denial of conflict when we know that some members worked with the CDC to develop a Lyme vaccine and we know that some had consulting contracts with the insurance industry. Both of these areas of work have a significant influence of whether patients can get testing treatment. Yet, they were allowed to police themselves.

In light of that, let's look at the recent announcement more closely. The sentence above is their home page summary of the fuller announcement. It's one sentence, with so much packed into it. Let's start with the depiction of the review panel as "independent".

How "independent" was that panel? When the IDSA announced their selections for the  panel - oh, wait...  They got to select who would be on the panel to review themselves? Is that "independent"? When I'm accused of a crime, may I pick my jury members, please?

But I digress. When they made the announcement, they gave the professional background of the person they appointed as Chair:

She is a past president of the National Foundation for Infectious Diseases (NFID) and IDSA.

Past president of IDSA? Doesn't that constitute a conflict of interest? Somehow, I don't see someone, whose own professional background could be tainted by a negative finding, as independent. Even if she was not on the Lyme Guidelines Panel, the reputation of the entire IDSA, and certainly any officer, is at stake here. After all, if the guideline process was as flawed as the AG says it was, how did the IDSA allow a panel with conflicts of interest and a bullying approach to scientific review to exist? If they didn't self-police the ethics of that panel, how many of their other panels have similar issues? There is an institutional need to vindicate the Lyme Guidelines Panel, isn't there?

It boggles the mind. Why didn't the antitrust settlement state that the members of the panel had to be free of past associations with the IDSA? At least at an officer level or having held any prominent position?

I don't see this panel as independent. They were selected by and paid for by the IDSA and chaired by a past president of the IDSA.

Onto the other assertion in that announcement: Did this panel recommend no changes? Actually, if you read through the report, they did recommend some changes. As the announcement states, they didn't direct the IDSA to make the changes "at this time" but said they should make for the next release of guidelines in 2012. Since these recommendations directly impact whether a patient can get testing or treatment, it seems negligent to wait. I'll give one example of what I mean.

Perhaps, the lengthiest discussion section in the review panel's report had to do with one piece of the Executive Summary of the Guidelines:

Clinical findings are sufficient for the diagnosis of erythema migrans, but clinical findings alone are not sufficient for diagnosis of extracutaneous manifestations of Lyme disease or for diagnosis of HGA or babesiosis.  Diagnostic testing performed in laboratories with excellent quality-control procedures is required for confirmation of extracutaneous Lyme disease, HGA, and babesiosis

By "extracutaneous", they mean a case of Lyme where the patient did not present the erythema migrans rash.

There is a lot of back and forth in the discussion. I'll point out one bit:

On the other hand, the Panel felt that in clinical practice, the presence of certain classic complications of Lyme disease such as aseptic meningitis, AV nodal block, inflammatory arthritis, and cranial or peripheral neuropathies, in a patient with epidemiologic risk of Lyme disease and in whom alternative diagnoses have been excluded or are unlikely, may be sufficiently convincing as to constitute an exception to the statement in the Executive Summary.

In other words, there are cases where clinical judgment is appropriate for diagnosing an extracutaneous manifestation of Lyme.

If that's true, shouldn't that be updated immediately?! I have a case of Lyme where I am unaware of ever having a rash. It took me years to get anyone to run tests other than the ELISA, which is known to miss up to half the cases of Borrelia, due to a lack of sensitivity. I'm "lucky" because, once I did pay for more testing (out of pocket, because insurance wouldn't cover it due to these IDSA guidelines) my test results came back definitively positive. They continue to do so. And I continue to be negative for anything else. But because of the required 2-tiered testing system laid out by these guidelines, I was two years delayed getting a diagnosis.

That's two years while I'm having trouble walking, getting lost in my own house, having seizures, unable to bear light and sound, losing feeling in my fingers and feet and so much more. I have verified peripheral neuropathies. So, my case fits the type they are discussing here. How can they make anyone else suffer like that when they know that the guidelines are wrong? Why wait 2 years? I simply don't get it.

If the guidelines acknowledged this possibility, when my peripheral neuropathies were confirmed, y doctor could have, based on the fact the I lived in New England and walked two dogs in the woods all the time, have made a clinical diagnosis without fear of the insurance companies reporting her and the state board threatening her license. Instead, she was trained that patients like me are crazy. And that's what she told me. I fired her that day and found a new doctor. One who recognized that something was wrong. She still felt constrained by the system, but she supported me seeking out an avenue to get to the bottom of it. I was "lucky".

Patients like my shouldn't have to get lucky to get treatment. This review panel knows it. So, why aren't those guidelines changes immediately? Who is it serving to wait.

I could go on about things that have a suspicious nature in this review process. They were supposed to have 9 members to avoid a tie and the IDSA didn't make a timely announcement when one member left the panel. One of the votes ended in a tie.

All of the other votes are unanimous. Its a hotly contested subject. There are no definitive studies to back the IDSA's opinions, which is what these guidelines are: the opinions of those on the panel. They turn to two small and very limited studies about long-term antibiotics, where the patients were all diagnosed in early stage and didn't have co-infections, and base all their opinions on that. The review panel admits there are clinical observations that need fuller studies to be confirmed and the studies haven't been done. So, how is it that all the votes are unanimous? As Dr. Stephen Phillips noted:

...he's never seen a scientific panel reach a unanimous finding, which, he said, raises the question of whether the panel was interested in science, or "simply the rubber-stamping on an intransigent ideology.

The investigation by the Attorney General was never about him or his office having an opinion on the science. It was about the ethics of the guidelines panel. He reported that their process was clouded with ethical improprieties that effect the business system for researching, testing for and treating Lyme Disease. Seems to me, if you want to get rid of that shadow from that cloud, you need to have impeccable ethics in your process of exonerating yourself.  Such is not the case here. There are far too many places in which sunshine was not allowed to penetrate the cloud, leaving us all in the dark and rendering everything they say and do suspect.

I'm not a doctor or a scientist or a lawyer, but when something smells fishy, the fish is already rotten.

Hence the prevalence of the #IDSAfail hashtag in the Lyme-related Twitter stream.

Double Duty

As May is Tick-Born Disease Awareness Month, I find myself with double writing duty. I'm a member of a small team at DailyKos (a web site for progressive democratic political activism with over 200,000 subscribers and millions of page views) who keep the community there apprised of the issues surrounding Lyme Disease. We post sporadically throughout the year, but May is more intensive.

Thus, I may be cross-posting and putting what I write for DailyKos here. I simply don't think I can keep up with two sets of writing. There will be posts here that are not on DailyKos, though. So, stay tuned.

Thank you for your understanding.

May is Lyme Disease Awareness Month

I prefer to think of it as Tick-Borne Disease Awareness Month. I know. It's a mouthful. But, the truth is, all too often, those generous little ticks like to share more than one microscopic critter with us. When we think about Lyme, we also need to be thinking about Babesia, Bartonella, Erlichiosis, Rikketsia and others. You can see a full list here.

Here's a fun little chart:

Click on the chart to see a fancier version, with pictures for identifying the ticks.

There you have it. Many of us get two or more of these. This is why I'd like to change the name "Tick-Borne Disease Awareness Month."