Go Directly to Jail, Do Not Pass "Go"

 

It's so hard to explain this to people who are not chronically ill...but it's just like being in prison.  I can't go out, I have Lyme and lupus and twenty other diagnoses, and I'm extremely sun-sensitive....to the point where I break out in a horrible rash if I'm in the sun for more than a few minutes.  I get severely nauseated, sometimes even end up in the ER with chest pains after sun exposure.  I have to wear dark glasses, even indoors.   

Besides, my driver's license is suspended for medical reasons (vertigo, narcoleptic episodes, etc.).  I'm working with my neurologist on getting it back, and I'm hoping that I will get it back very soon, but at the moment I can't go anywhere unless someone takes me there.  That "someone" is usually my husband, but lately he's been sick and in a lot of pain.  We found out recently that he has Lyme too, probably caught it from me.  He doesn't feel like going anywhere, so even if I wanted to go somewhere (which doesn't happen very often), I can't because he won't take me.

I only get out of the house to go to doctor's appointments.

But it's worse than that, really....it's not just that I don't leave the house, I spend most of my time in one room with the blinds closed and the lights dimmed, with my laptop as my only link to the outside world.

Because most of the time I don't feel well enough to leave my bedroom.  My feet hurt and burn because of the erythromyalgia, so it's very difficult to walk.  I hurt all over anyway because of Lyme and RA and fibromyalgia and God-knows-what-else.

I make it to the kitchen sometimes to cook dinner.  Occasionally I bake something.   That's about it.

I suppose this is coming up now because I will not be able to work much longer.  I still work part-time over the Internet for my employer, even though I've been too sick to go in to the office since early April 2010.  But while I've been sick for quite some time, as long as I knew that I could still do my job, I felt as though I might have a future.  

Now the future seems curiously empty, as if I have been traveling in a ship over a Flat-Earth ocean and suddenly I reach the end of the world where the ocean spills off into the abyss.  The emptiness ahead is terrifying.  

I feel so alone, which is silly because there are plenty of people in this world who are going through similar phases in their lives, who are losing their careers because of illness.  But that doesn't help me feel any less alone.

Sorry for the negative tone of this post, but today I needed to talk about where I'm at and what I'm going through and how Lyme (and lupus, and RA, and autoimmune hepatitis, and Babesiosis, and Bartonella, and HME, and celiac disease, and etc.....) is/are affecting me TODAY.

I will post something more helpful next time, no doubt.

The pain that Lyme can cause: Erythromelalgia, or "Man-On-Fire Syndrome"

I have recently been diagnosed with erythromelalgia (aka EM), a painful neurovascular disorder that is believed to be rare....in fact, Kate Conklin's video above states that fewer than 400 people in the United States have actually been diagnosed with EM.

NORD (National Organization of Rare Disorders) defines defines erythromelalgia thusly:

Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. (The prefix "erythro-" denotes redness, "mel-" is a combining form meaning limb or limbs, and the suffix "-algia" indicates pain.) Although erythromelalgia typically affects both sides of the body (bilateral), it may sometimes involve only one side (unilateral). In addition, the disease course may be extremely variable from case to case. For example, in some individuals, symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks.

The specific underlying cause of erythromelalgia remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities. Erythromelalgia may be an isolated, primary condition or occur secondary to various underlying disorders. Primary erythromelalgia may appear to occur randomly for unknown reasons (sporadically) or may be familial, suggesting autosomal dominant inheritance.

My symptoms began suddenly, just as Kate's did in the video.  Fortunately my erythromelalgia has not been as severe as hers, but it IS painful!  That first day my toes suddenly swelled up and became hot and red and excruciatingly painful.  The soles of my feet were painful too.  The really odd thing is that my Raynaud's syndrome had been very active just before this, so I had the startling experience of seeing my toes turn from a cold ice blue to a hot beet red in just a few minutes!

EM makes it VERY painful to walk when it's flaring.  EM has also affected my face and ears on occasion, causing them to feel very hot, turn bright red and practically glow, but my feet seem to be the main targets of the erythromelalgia.....they are nearly always red and painful these days.

I suspect that EM is not as rare as most doctors believe; there are likely MANY people have EM who remain undiagnosed.  I myself recently encountered two people online who apparently have undiagnosed erythromelalgia....they reported their symptoms to me and when I told them of erythromelalgia and they looked it up online, they were able to confirm from the descriptions and pictures that's exactly what they do have! Of course, the reason they didn't know they had erythromelalgia in the first place is because their doctors had never heard of it.

So you've read this far and are now wondering, "what does erythromelalgia have to do with Lyme?"

When I first started to research EM, I found information that indicated in many cases there is no known cause.  Erythromelalgia can be primary, that is a disease in and of itself, or it can be secondary to another illness or syndrome.  One of the illnesses associated with EM in the literature is SLE (systemic lupus erythematosus), or lupus for short.

In my case, I think Lyme has everything to do with my erythromelalgia!  After all, I blame Lyme for triggering my lupus anyway (see my previous post on lupus). I know that I was born with a familial predisposition to developing lupus, but I didn't actually develop the disease until AFTER I contracted Lyme.

Since EM can be secondary to lupus, and Lyme often mimics or triggers lupus, Lyme has very probably triggered the EM (directly or indirectly) in many of those poor souls out there who have it.

And I found at least one Lymie who agrees with me, Kris who writes the Lyme blog called Lyme Lights Utah.  She too suffers from erythromelalgia and has numerous posts on this topic on her blog.  I confess I have not read them all...yet. Please see her very well written and interesting initial post on erythromelalgia from November 2009.

Of course, since I'm a scientist, I've continued to dig into this topic.  I have actually come up with another reason for believing that Lyme and erythromelalgia are linked somehow, based on data in a recent medical paper I read: Incidence of Erythromelalgia: A Population-Based Study in Olmstead County, Minnesota.

The authors of this article have discovered that the incidence rate of EM is increasing over time.  So erythromelalgia is becoming more and more common every year in Olmstead County, MN.

Guess what else is becoming more common every year in Minnesota?  Yep!!  Lyme!

I decided to compare the data for EM from the paper with the data on the Minnesota State website regarding the incidence rate of Lyme disease as a function of time.

From http://www.health.state.mn.us/divs/idepc/diseases/lyme/casesyear.html

The nice graph above is from the state website.  The medical paper put all of the EM numbers into 3 data "bins" that were each 10 years wide (1976-85, 1986-95, 1995-05).  I used these bins to make the following graph of incidence of erythromelalgia as a function of time:

In order to actually compare the incidence of Lyme properly to the incidence of EM in Olmstead County, I need the Lyme numbers from Olmstead County only.  But those data were unavailable on the state website, so I used the Lyme numbers for Minnesota as a whole for comparison. 

I summed up the numbers in each "bin" to calculate the 10 year incidence rate; unfortunately, since Lyme came to national attention in the late '70s in Connecticut, the numbers for Lyme disease in Minnesota began in 1986, at least on that particular website.  So I was only able to calculate numbers for two of the bins: '86-'95 and '96-'05.  Statistically this is not "good enough" to prove anything, of course.

The results are interesting nonetheless....I ended up scaling the Minnesota Lyme numbers by dividing them by 200, and then was amazed at how similar the two graphs looked, at least from 1986 - 2005!

 

So the scaled (divided by 200) Minnesota Lyme numbers (red bars) look very much like the Olmstead County erythromelalgia numbers (blue bars)....even though this does not suffice to prove anything, it is suggestive.  It is enough, at least in my mind, for doctors to tell patients who present with EM that they ought to be tested for Lyme.

Human-to-human transmission

 

This is a post I hoped that I would NEVER have to write.   Yesterday I accompanied my husband to the doctor (my LLND); he gave us the results of my husband's recent IGeneX Western Blot tests:

IgM: bands 31, 41, and 83-93 positive
IgG: bands 28, 30, 41, and 66 positive

The IgM test is IGeneX positive, although both of them are CDC negative, of course.

I was so afraid of this, after he suddenly developed TWO autoimmune diseases overnight (celiac disease and psoriasis) a couple of years ago.....then he started complaining of headaches, extreme fatigue, pain in his feet, knees, neck, etc.  My husband's health has really gone downhill recently.

We were married in 2004, in February. My first symptoms of severe illness occurred in March 2004. But his health was good for the most part until early 2009. That's when he was dx with celiac and psoriasis.

I've been telling him for over a year that he needed to get a Western Blot done, but he always insisted that he couldn't possibly have Lyme and that it was a big waste of money. He fought tooth and nail against getting this test done and then going to see my LLND.

I believe that this is a case of sexual transmission....I gave it to him.  :(

I think this is an important issue, because spouses out there may be passing Lyme back and forth to each other and preventing each other from getting well.

Luckily my husband had symptoms, which is how I finally persuaded him to be tested, but some people might not be symptomatic even if they are infected.  Lyme can lie dormant for years until triggered by stress or something else.

We're not SURE who got bitten by the tick, but I think that logically it had to be me, since I have so many tick-borne illnesses . My husband doesn't have symptoms of Bartonella or Babesiosis or HME. He's not nearly as sick as I am (thank goodness!), and he doesn't seem to have any neurological involvement, which is VERY good news!

Also, I recently remembered having a bulls-eye rash, which at the time I thought was ringworm. So again, that points to me as the one who first contracted Lyme.  He has no memory of any tick bite or rash.

It is always possible that we were each bitten separately, but I believe that's less likely than the human-to-human transmission scenario, for the simple reason that Lyme is related to syphilis.

I am so depressed now....

Letter To People who are NOT struggling with Chronic Pain

From http://www.painexhibit.com/ag213_Collen

In a Chronic Pain forum that I participate in from time to time, there is a reporter who is asking to interview people about their daily lives with chronic pain.   I have emailed her indicating my willingness to discuss my own life and my challenges.

But this brought to mind a letter that has been circulating in email and posted various forums for some time; the author is unknown.  I'm posting it here because it really tells it like it is; it is truly worth reading:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little bit about chronic pain and its effects, and of those that think they know something, many are actually misinformed.

In the spirit of informing those of you who wish to understand...these are the things that I would like you to understand about me before you judge me.

Please understand that being sick does not mean that I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I don’t seem like much fun to be with, but I’m still me — stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d still like to hear you talk about yours.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy, that’s all. It doesn't mean I’m not in a lot of pain, or not extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But your looking so healthy!”... I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you’re either flat on your back or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest, most frustrating, components of chronic pain.

Please repeat the above paragraph substituting, “sit up”, “walk”, “think”, “concentrate”, “be sociable”, and so on, for the phrase "stand up"...it applies to everything. That is what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If it happens, please do not take it personally. If you are able, please try to remember how very lucky you are--to be physically able to do all the things you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short period of time can cause more damage and physical pain that you can imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in/take these pills *now*, that probably means that I have to do it right NOW - it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure for me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we would know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked we would KNOW.

It’s definitely not for lack of trying. If, after reading this, you still feel the need to cure, then so be it. I may or may not take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. A matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, so accept me as I am. I know that you literally can not understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.

In many ways I depend on you – on people who are not sick. I need you to visit me when I’m too sick to go out. Sometimes I need you to help with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know I've asked a lot of you, and I do thank you for listening. It really does mean a lot to me.

AUTHOR UNKNOWN

Western Blots - what do all of those darn bands MEAN???

Diagram of basic steps to a Western Blot result

OK, this is an important issue; you should know what your medical tests mean.  And always, always get copies of all blood work (or any other type of test for that matter)!

First of all, you should know that the Western Blot blood test does not actually test for the presence of Lyme disease.  It tests for it indirectly by looking for antibodies made by your own immune system against the spiral-shaped bacteria (spirochetes) which cause Lyme disease.

Lyme bacteria (spirochetes), image from Wikipedia

Some of these antibodies are made to attack specific proteins on the outer surface of the bacteria, others to attack the flagellum (the tail), etc.  Each band in the Western Blot corresponds to a certain antibody that your body might make to fight the Lyme spirochetes.

I should also point out that which of these bands are important and specific for Lyme and which are not is still a bit controversial (depends on which researcher you talk to); the list below is a synthesis of a couple of different lists that I found online. 

Western Blot Bands description (note: cross-reactive means it could indicate other spirochetes, specific means it ONLY happens when Lyme disease is present.  Borrellia or Bb is Lyme disease.):

18 p18 flagellin fragment
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 outer surface protein D (OspD); Oms28; specific for Bb 
30 OspA substrate binding protein; common in European and one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients 

The numbers are actually the molecular weights in kilo-Daltons (kDa).  I've highlighted the antibodies in red which (many people agree) are very specific for Lyme disease.

IgM versus IgG is usually interpreted this way: if you have a positive IgM Western Blot, but negative IgG, it may mean that you just became infected fairly recently, because the IgM reaction to infection generally happens before the IgG.  If you have a positive IgG it may mean an established, chronic infection.

OK, finally we need to talk about what POSITIVE means!

How does one decide what constitutes a positive Western Blot test?  In some ways this seems like it would be a fairly easy question to answer, but when you realize that every person's body reacts differently to infection, and one immune system may not make the same antibodies that another immune system might make, then it becomes highly complicated.

In addition, to follow this discussion on all levels, you must realize that most doctors in the United States are NOT well-educated about Lyme disease.  They generally believe that:

(a) The CDC and the Infectious Disease Society of America (IDSA) are the ultimate authorities and that anyone who disagrees with them is a crackpot.
(b) Lyme disease is rare, hard to catch and easy to cure (this is the IDSA official "line" and it is WRONG!!!!!!).
(c) Lyme disease should be treated with 2 - 4 weeks of doxycycline and THAT'S IT!  (IDSA guidelines again.  This makes NO sense...there are many illnesses out there that have to be treated very aggressively for months and months.) 

Please understand that there is a political and economic battle being waged in this country with the health insurance companies and the IDSA on one side and many, many Lyme patients who are desperately ill on the other side. 

If you don't believe me, you need to watch Under Our Skin ASAP!!

OK, here are three sets of Western Blot criteria for determining whether or not someone has Lyme disease; let's compare them:

1. The current CDC criteria (used by the IDSA and health insurance companies) for a positive Western Blot are as follows:

      (a) For IgM, 2 of the following three bands have to be positive: OspC
           (22-25), 39 and 41.
      (b) For IgG, 5 of the following ten bands have to be positive: 18, OspC
           (22-25), 28, 30, 39, 41, 45, 58, 66 and 93. 

I will not go into the ins and outs of how they came up with these criteria. You can look at the CDC website for that.  Suffice it to say that when the CDC criteria were first created, they were not recommended for diagnostic purposes.  In fact, there used to be a statement on the CDC website that said so.  I think that statement has now been taken down in an attempt to appease the IDSA. 

2. The criteria used by IGeneX, one of the top Lyme laboratories in the country: IGeneX considers a Western Blot (IgM or IgG) to be positive if just two or more of the following bands are positive: OspC (23-25), 31, 34, 39, 41, and 83-93.  

3. Possible future criteria in China: I recently read an article about Lyme disease testing in China, where Lyme is spreading rapidly through the country.  The researchers quoted by the article recommended considering a Western Blot positive if just ONE single Lyme-specific band was positive.

So the IDSA and the health insurance companies are in cahoots, but ILADS (the International Lyme and Associated Diseases Society) is opposed to their anti-patient agenda and their highly restrictive and ridiculous diagnostic criteria for Lyme disease. Our heroes, the Lyme Literate doctors (aka LLMDs in the online Lyme communities) are generally member of ILADS and believe that the using the CDC WB criteria for diagnosis of Lyme disease is incorrect.

So what's so terrible about the CDC WB criteria anyway?  For one thing they don't mention some of the bands which are the most highly specific for Lyme disease, namely bands 31 and 34, aka OspA and OspB. Your body can only produce these antibodies if you have been exposed to Lyme spirochetes!

The main reason these were left out is that several of the doctors who originally decided on the criteria were involved in an effort (at that time) to create a Lyme vaccine, and those two bands were part of the vaccine, so anyone who had been vaccinated against Lyme would test positive for 31 and 34 even if they did not have Lyme.  So they deleted those two bands from the list.

However, the Lyme vaccine is no longer being used because it caused terrible autoimmune reactions in a number of people who received it.   But (oops!!) the CDC forgot to put those two bands back into the criteria after they stopped using the vaccine!

And requiring FIVE bands for an IgG to be positive?  How do you know that everyone will produce a minimum of 5 different IgG antibodies?  And why include bands 45, 58, and 66, which are not specific for Lyme disease?  Why not include bands that are SPECIFIC for Lyme???  Clearly these criteria are too restrictive.

It has been said that the current CDC testing misses at least half of those who truly have Lyme disease.

As to the IGeneX criteria, these make a lot more sense, as the only band in their set that is NOT Lyme-specific is band 41.  Band 41 is usually the first band to show up for Lyme but also is frequently positive for people with other spirochetal infections such as syphilis and certain dental infections.

However, in my humble opinion, the proposed Chinese criteria make the most sense, since your body should not be able to produce even one single antibody to a Lyme spirochete unless you have been exposed to Lyme!

In the opinion of many LLMDs, IGeneX is one of the best places to get a Western Blot done, as their testing is more sensitive and they also report the "indeterminate" results, which means that there was some sort of reaction there, but not a strong enough response to be considered positive.  The indeterminate results can be considered clinically significant if a doctor wishes to include those.

My own IGeneX Western Blots were both positive by IGeneX criteria but negative by CDC criteria.

The positive bands from both my first and second IgM tests were 18, 30, 31, 34, and 41.  Bands 23-25 and 39 were reported as indeterminate in the first IgM WB but only band 39 showed up as indeterminate in the second IgM WB.

The positive bands from my first IgG WB were 30, 31, 34, 41, and 58, and in the second IgG WB bands 31, 34, 41, and 58 were positive.  In the first IgG WB, band 23-25 was indeterminate, and in the second band 39 was indeterminate.

Attention, all doctors employed by (health insurance company which shall remain nameless) who have denied my various insurance claims, and who use the CDC criteria to tell me that I don't have Lyme disease: note that many of the positive and indeterminate bands in my IgM and IgG WB results are VERY VERY specific for Lyme disease: 23-25, 30, 31, 34, and 39.

THERE IS NO WAY IN H-E-DOUBLE-HOCKEY-STICKS THAT MY IMMUNE SYSTEM IS "RANDOMLY" PRODUCING THESE PUPPIES!!!!!