Nine Reasons for False Negative Lyme Blood Test Results

From the Lyme Disease Foundation brochure: Frequently Asked Questions About Lyme Disease

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs. These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

May is Lyme Awareness Month!

....and certain members of the IDSA are trying to keep the populace ignorant, as usual!!

Keep fighting, everyone!  We're in a battle not just with the spirochetes that have invaded our bodies, but also with certain self-centered, heartless factions in the medical community.  The IDSA group in question literally has the power of life and death over Lyme patients in this country, because they call the shots regarding Lyme diagnosis and treatment protocols.  And they are trying to suppress the truth about THEMSELVES, of course.

I saw the following brief article posted in one of my Lyme groups, so am re-posting it here. 

IDSA aims to censor UNDER OUR SKIN TV broadcasts

Posted: 28 Apr 2011 04:10 PM PDT

Open Eye Pictures has recently learned that the Infectious Diseases Society of America (IDSA) has been trying to stop the television broadcast of its award-winning documentary on Lyme disease, UNDER OUR SKIN. Working behind the scenes, IDSA officers and members have been contacting the Public Broadcasting Service (PBS), the National Educational Telecommunications Association (NETA), and local PBS stations, calling our film "dangerous for viewers" and full of "conspiracies. "

The Public Broadcasting Service (PBS) was created in 1967 to "provide a voice for groups in the community that may otherwise be unheard," and serve as "a forum for controversy and debate" by broadcasting programs that "help us see America whole, in all its diversity."

We are heartened that no PBS affiliate station has folded under the pressure. UNDER OUR SKIN is the first televised documentary dedicated to educating the public about the plight of Lyme disease patients, who have been abandoned by the medical establishment, in part, because of the IDSA's flawed Lyme guidelines development process.

While the primary focus of UNDER OUR SKIN is to inform viewers about Lyme disease through the eyes of patients, it also includes interviews with several authors of the IDSA Lyme disease treatment guidelines. These authors were briefed by the IDSA vice president of communications before the filming began, and we believe these interviews accurately represent the IDSA viewpoint on Lyme disease.

UNDER OUR SKIN also shows the unfolding of the investigation into the IDSA Lyme disease guidelines by former Attorney General Richard Blumenthal of Connecticut. His final investigative report found that there was:

. Significant conflicts of interest among the original IDSA guidelines authors,
. Suppression of scientific evidence by authors, and,
. Exclusion of panel members with opposing viewpoints.

The IDSA's suppression of dissenting views continues. This time the target is UNDER OUR SKIN. (More examples of IDSA censorship are listed at the end of this article.)

Recently, the importance of transparency and open dialogue in medical guidelines development were underscored in a report by the Institute of Medicine (IOM), "Clinical Practice Guidelines We Can Trust." In this mandate for guidelines reform, the IDSA Lyme guidelines were called out as an example of a process gone awry:

"This case highlights the need for standardization and transparency in all aspects of systemic data collection and review, committee administration, and guideline development, so that questions about these issues do not detract from the science. [Guideline developers]. must be aware of the many, varied observers who will consider their development processes, particularly when their recommendations are likely to be controversial. "

And in a recent study in Archives of Internal Medicine, researchers found that out of 4,200 IDSA guideline recommendations, more than half were based on no more than expert opinion and anecdote, not hard evidence, reinforcing points made in our film. (See references below.)

So, as investigative news organizations and documentary film producers - with the help of the Physicians Sunshine Act - begin to shine the light on endemic commercial influences on "evidence-based medicine," it's a wake up call to the medical establishment to clean up their own act before attacking outside organizations dedicated to protecting the public.

In other words, don't shoot the messenger.
____________________________________

To read more about past IDSA efforts to censor dissenting opinions:

Poses, R. (2006) "The Conflicted Defending the Conflicted: Infectious Disease Specialists' Attack on the LA Times Goes Awry."

Henderson CW, DeNoon, DJ. (1997) "Strange Bedfellows Damage CDC and NIH Credibility" AIDSWEEKLY Plus. Feb 3 1997.

Oransky, I. "Transparency needed in drug researchers' finances." Boston Globe. Oct. 7, 2006.

To read more about the flawed IDSA guidelines development process:

Johnson, L. and R. B. Stricker (2010). "The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines." Philos Ethics Humanit Med 5: 9.

IOM. (2011) "Clinical Practice Guidelines We Can Trust." Washington D.C. National Academies Press.

Lee, D. H. and O. Vielemeyer (2011). "Analysis of Overall Level of Evidence Behind Infectious Diseases Society of America Practice Guidelines." Arch Intern Med 171(1): 18-22.

Frederik Joelving, Medical "best practice" often no more than opinion".

--
Vickie Travis
Former Caregiver, Eldest Child and Daughter of Adam Wesley Arnold

A Lyme Obituary - and a Message to the Living

I received this obituary in email and felt I had to share it with you. No, I didn't know the gentleman in question. Unfortunately, this is what can happen if you have Lyme disease and you're forced to rely on conventional medicine and doctors who follow the IDSA guidelines for treating Lyme:

Vernon Dale Kyle, 55, Kansas

Vernon Dale Kyle liked a good story. Mostly about catfishing on a long-forgotten Kansas lake. He was born Sept 24, 1955 in Garnett, Kansas. He had one best friend in those early days, and it was Don. They roamed the Kansas prairie like the buffalo, wild and free! He was raised by Chester and Edna Kyle with one brother and one sister, Jim and Aletha. 

Vernon went into the US Army 82nd Airborne division and it wasn’t long before he took his turn in Vietnam in 1974, then on to Germany. He re-enlisted into the US Army Veterinary Corps stationed at Ft. Ord, then to an outpost in San Diego, California. He met Peggy Miller and they married at Cabrillo National Monument at the Lighthouse overlooking the ocean. 

After discharge, he moved to Tulsa, OK where his two awesome kids were born, Jamie Lynn in 1985 and Jesse Dale in 1988. Vernon went to college and became a journeyman welder and stationary engineer. He specialized in boilers and high pressure systems, and stainless steel welding. He loved coin collecting, nature, and decorative engraving. He returned to Garnett, Kansas in the early 1990’s to support his mother when his father was ill. 

He was employed at the Anderson County School District in the maintainence department until suddenly he became too ill to work in October 2007. He was life-flighted twice to the KC hospitals and in ICU and on a rehabilitation unit for five months.

Vernon’s illness was bacterial in origin, his family was told by the doctors in Kansas City. When he received IV antibiotics, he thrived. When the doctors took away the antibiotics, he began to fail. The doctors would never identify the name of the bacteria that was trying to take Vernon’s life. 

He had symptoms like abcesses in his abdomen and near his lung and kidney, foot pain, rashes similar to a bartonella rash, and little red dots on his body, memory loss, dizziness, joint pain, loss of feeling in his hands, feet, loss of use of fine motor skills, difficulty processing any information, body jerks (myoclonus and severe muscle cramps) and seizures. 

As time went on he experienced intense bone pain from a collapsing spinal cord, and lost about 6 inches in height. One doctor his family consulted said that Lyme disease and bartonella can cause the bone to not have blood supply and oxygen due to excessive fibrin production in the blood. As time progressed, Vernon needed oxygen, had an intermittent low heart rate of 40, would pass out. He became a diabetic and experienced hepatitis and kidney failure. 

By the way, his cat died of tick-borne illness.

He could never understand the “controversy" over Lyme disease.  Even though other family members were eventually diagnosed with Lyme disease, he was never tested by his doctors, simply because they refused. 

Additionally, after numerous hospitalizations, he was denied long term antibiotics by infectious disease doctors in the hospital and his physicians in the community, and was denied testing when his family directly asked for Lyme testing using specialty laboratories. More than three years of advocacy efforts failed on his behalf.

During one hospitalization, his family asked the infectious disease doctor, “Can you help him? His family has Lyme disease, will you test him?” That Infectious Disease doctor said, “No,” firmly, immediately turned his back and walked out of the room. The doctor discharged Vernon the next morning. 

But Vernon had to laugh when this same, bright, Infectious Disease doctor actually said, “There are no ticks in Kansas.”

Several times Vernon was too sick to leave the hospital and care for himself.  Even in his weakened condition, once the hospital sent him home in a taxi without any home nursing!  His insurance wouldn’t pay any more for his care. Not even Adult Protective Services would intervene, even after many calls.

Vernon learned NOT to mention Lyme disease to anyone. No one was willing to test and treat him for Lyme disease and bartonella. Not the Veteran’s Administration hospital, not the big medical centers in Kansas City, nor his local doctor. But they were all perfectly willing to let him suffer and die from tick-borne illnesses. Ultimately, he lost the war.

Vernon was left by his doctors to debilitate, and after losing balance, he had repeated traumatic brain injuries from falling. He later was able to get assistance through the TBI waiver program, but after many calls for a higher level of care, even this system failed him. 

His family later discovered that he had gone a month without a bath, and often didn’t have food or water, and went to the hospital on his birthday after he collapsed from carbon monoxide poisoning from his furnace. Thankfully, he was with family that day and he was admitted for another time in the ICU. 

Yet those medical professionals who were suppose to care for him, didn’t. Every time his family would try to get help for him, those in charge would fight his family. They even refused to help him to apply for full Veteran’s benefits as a Vietnam veteran, and he often suffered from not having enough money to live. He took it well. He kept his doctors laughing even when he knew they were going to let him die. 

He lived with the courage of a warrior, and endured and persevered through unrelenting pain to the end, which came on Sunday, October 3, 2010. He left a good example of courage under fire, and joy in the midst of sorrow. At his memorial service, his son-in-law recited “Invictus,” 

The more his body was crushed by Lyme disease and bartonella, the sweeter and more loving he became. He had given his heart to his Savior, Jesus Christ, rather late in life, and it was evident that his life had changed.

He is already greatly missed by the love of his life, Peggy, and his children, siblings, and neighbors and friends. Now he is truly free, and we are sure he is fishing in heaven and that he caught the biggest fish this time! 

Now, please understand, I'm not sharing the story of Mr. Kyle to be morbid; I'm sharing it because I feel that it's important for the Lyme community to have ALL the facts.  There is some very important information in this obituary.  For example:

1. You can DIE from Lyme disease.  Yes, it is possible.

2. If you have Lyme, you should be tested immediately for hypercoagulation syndrome; it's a very common condition for Lymies and that's why poor Vernon lost 6 inches in height when his spine crumbled.  It can also lead to a stroke and prevent your medications from being effective.

3. There are parts of this country (USA) which have few or even NO Lyme-Literate doctors (aka LLMDs).  And most of the "regular" doctors will not treat Lyme.  Some of them live in denial of the very existence of Lyme disease, at least in their part of the country.

  

If you live in one of those places, you should probably move.  Seriously.  Otherwise be prepared to fly to New York or Seattle or San Francisco every six months or so to see someone who is willing to give you long-term antibiotics (in defiance of the IDSA edict that no one should receive more than 4 weeks of antibiotics for Lyme even if they are DYING).

Because that's the reason Vernon Kyle was not diagnosed with Lyme, why he never got proper treatment.  His doctors had already treated him with antibiotics ... the obituary doesn't say for how long, but I assume it was at least 10 days, maybe longer.  

All of those short-sighted, IDSA-believing doctors Vernon trusted merely said to themselves, "He's already been treated for Lyme, this must be something else!".  They really do believe that a short course of antibiotics takes care of 100% of Lyme cases ... always ... end of story.

R.I.P., Vernon ... and catch a lot of fish!

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