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Tuesday, October 13, 2009

The sick role and Lyme

I saw a patient today who has been treated by another physician. The patient spends nearly his entire day taking supplements along with a complex regime of antimicrobials meticulously scheduled. The medicines are rotated and pulsed within specific protocols. This patient is going broke, in part because of the high cost of supplements which he assiduously takes per his physician's directions. He has stopped working in part because his illness is a full time job. His life centers around being THE PATIENT. Lyme disease has become his life. There is no time for normalcy. The sick role can become integrated into the disease. Perhaps, ironically, some readers of this BLOG focus all of their attention on their illness--scouring discussion forums, constantly perusing the Internet, seeking some new tidbit of esoteric information. The disease becomes a life style.
Many of my patients have told me that they no longer read my BLOG or read about Lyme disease, the politics and the controversies. Of course when I see such patients we discus the course of their disease and the rationale behind prescribed therapies during each visit.

These patients may be free to pursue a life which is as normal as possible. They spend time with family and friends. They function at the highest level possible in a multitude of domains. Suffering with Lyme disease becomes something they live with: It is not the center of their universe.

Such patients get up every morning, despite pain and other symptoms, put on their best faces and face life head on in spite of adversity. Other patients are constrained within a prison, imagined or real, comprised of walls, esmeshed in the fabric of illness and its attendant disabilites.

So I like to keep the regimens simple, and largely devoid of supplements. Changes are made when patients see me at scheduled appointments.

A word about supplements. Some patients certainly report benefits from a variety of add-ons. Some feel energized from Co-enzyme Q10, which I truly think helps many people. Some swear by teasel root. I may recommend one or two additional supplements but not many. I do not recommend multi-vitamins on a routine basis.

I was reared in medicine with a healthy dose of skepticism regarding vitamins.(I have discussed this before). Vitamin E--the "miracle worker," turned to offer no benefits to heart patients in controlled, published studies. Vitamin C turned out to be potentially harmful to heart patients. It was shown to increase plaque in arteries, increasing the risk of heart disease unexpectedly. Simple chemistry may give us the reason. Vitamin C can exist chemically in a reduced or oxidized form. The reduced form is an anti-oxidant; the oxidized form can be a harmful pro-oxidant. Supplements may not be properly balanced. So I perfer to leave nutrients and vitamins in the capable hands of Mother Nature. I stress a healthy diet with fruits, vegetables and whole grains which gives the body vitamins in their proper form along with the potpourri of photochemicals needed for these nutrients to perform optimally.

A folksy argument I frequently share with patients is something like this: A chronically ill patient is likely to be deficient in a variety of nutrients. This is caused by the illness or chronic infection as in the case of Lyme disease. One can think of such a patient as akin to a gas tank with a hole in its bottom. You keep filling up the tank with gas (supplements) but the tank is perpetually empty because the fuel drains through the gaping hole. Close the hole first--by getting the infection under control, and then the metaphorical tank can become full with the needed fuel.
A case of not putting the cart before the horse.

This does not apply to patients with dramatic deficiencies. And of course, this is just my working hypothesis and I know that most other physicians operate from the opposite paradigm.
My experience tell me that it works both medically and psychologically for my patients.


LYMEMJ said...

A Doctor once told me that patients seek answers in the internet and in every book when they do not get them from their physicians; maybe that's why YOUR patients don't need to even read your blog! LOL! I do believe this disease is part of our "new life style" but I am scared of reading people who writes me saying hat they were "happier" up North because everything breathes like Lyme and here in Florida there's no one to talk about it...? I think such intensity makes us sicker, as those routines of medicines and supplements taken so regularly reminding you every minute how sick you are? Sorry, not good mentally nor physically 'cause they are not really helping! When I'm very sick I just try not to drown; when I get better I take my nose out of the water and sometimes I can even swim; I guess that is my new lifestyle - like if there is any other option? LOL!!!!

monkey girl said...

After my initial diagnosis, yes I did spend about two weeks learning everything I could about this disease.

It's now been 18 months since I've started treatment. I have my good and bad days.

I read a few lyme blogs that I feel have important new information that I can discuss with my LLMD.

I find everything needs to be in moderation.
I find the patients who do the best (from our lyme support group) are the ones who try to get on with their lives. Yes, a chronic illness can be debilitating, but dwelling on it 24/7 will invariably suck you dry mentally and physically. And before they know it they've been sucked into a deep black hole.

In college, I studied the psychology/sociology of illness (generally chronic). When patients don't get better, they isolate. I think the internet feeds on this. If you only view yourself as a lyme patient, and not a mother, daughter, artist, teacher...etc, you've lost yourself in the disease. How will you identify yourself, when you get better?

I'm glad you covered this, even at group we can discuss sickness 24/7, there's more to life.

Leslie said...

Great discussion!

I'm looking at this from a parent's perspective. My teenager has never visited an online lyme group and has never met a person from our area who suffers from lyme. She had always been a go-getter, and still tries to be....But, she had homebound instruction for 1 1/2 years, and had hoped to attend school this year...But, lyme symptoms stood in the way. She now has a private tutor for her education.

I guess my point is that even if one has a positive attitude and tries to get on with life, the disease can get in the way. Whether my daughter blames lyme on her sense of isolation or not, the effects of the isolation are devastating. She has hobbies and interests that she is passionate about, thankfully. But, she often must cancel those lessons or plans. Friends, of course, don't understand the disease, or why she cancels things so frequently...when she "looks good."

I guess it's all relative? If my daughter let lyme define her, perhaps she'd be in worse physical and emotional shape?

Don't get me wrong, I agree with what your points, LymeMD. But, the repercussions of chronic lyme are so serious and sometimes life-altering, even with a positive attitude.

I just want a cure....

Anonymous said...

I agree with Leslie

I was just booted off a trip "friends" were planning for August 2010 because they didn't want to have to pick up my share of costs if I became "too sick to travel" again.

Mind you, I have been socializing more lately, never complain to anyone about anything, have gotten involved in former interests as much as I can.

No one except me understands how much this has affected my life and how many years I trudged on while sick and no one knew what was wrong.

We can only push ourselves so far before something pushes back. The disease does have some control of my life but I choose to go on the best I can despite it.

It is there in the background and for me will probably always be there, I can accept that, remain interested in knowing the recent thoughts on it and still have a life.

MJ said...

I might be surviving a day, but not even close to going back to what was "my life", and every time I think I might be near to the end of the tunnel something, sometimes even stronger, shows up. Have I lost the hope? naaa.. do I still wake up and fight every day with joy and love? oh yeah. Is this a life, my life, the life I want, the life I had? certainly not. I can't even think of having a teenager suffering this... I pray every day begging my family doesn't get it... I pray anyone else in the wold won't get it! I pray the guidelines are changed to avoid others to suffer so much without proper treatment. This blog was the best source I found and the hugest help I got! Am I a fanatic of Dr. X? nooo... !

Renee said...

My husband and I both are getting treatment for Lyme and coinfections. My husband has worked hard as a pastor for over 30 yrs and misses his work greatly....BUT after only an hour or two of mental work he is so exhuasted he must sleep for 2 hrs to be able to function again. He cannot work, our LLMD agrees. He has not chosen to take on a "sick role" as you state. Disability is NOT what he has chosen. It is a necessity. Some cannot just get on with their lives....when their lives have been brought to a halt by an illness they must focus on it to address it. There are no boxes that we with Lyme fit into..each of us is an individual and need to be treated as such.

glytzhkof said...

I agree with you Renee, Lyme is a very unique experience for each individual. It's complicated by so many things: duration of untreated infection, presence of co-infections, other conditions, type of work and many other factors. It certainly is difficult to function - especially since many Lyme patients have few visible symptoms. Most of us face the "psychosomatic accusation" - at least eventually. And the truth is that I think those factors increase over time as people experience more hopelessness.

Still, I think what the LymeMD is saying is very important too: I think some people start taking too many supplements and rely too much on unproved "remedies" and spend too much time researching what "the latest" is. In the end it seems to become sort of a "lifestyle" or obsession for some people.

As somebody else pointed out "slow and steady wins the race" when it comes to Lyme. There are no quick fixes, no miracle cures as of now. The lack of acceptance in the medical community for the presence of the condition, means there is a lot of room for supplements, alternative treatments and "pure noise" in some cases.

We just have to be grateful that we have blogs such as this one where we can find some educated guestimates of what treatments work.

MJ said...

I would like to add that the idea of being busy and not concentrate in the illness is a real therapy that we need to "regain" a life, to feel better, to live the best possible. If we get to do things we like, one a day, one at a time; that is recovery! It is indeed a very harsh illness and we cannot "operate" as before or as others, but life is like a mirror, better smile!

Unknown said...

From working in healthcare i have found myself trying to be the extreme opposite of this. I have seen this time and time agian with a varitety of diseases (COPD,CHF, DM, ETC) so... what did I do? cut work to ONLY 40/hr (HA!! wonders of healthcare hours) then just "per-diem" ... then one way falling over, legs wont hold me.. NOW I start to freak out a bit.

surely this is MS -- perfect clinical picture.

I thought the lyme diagosis was better !! was happy, was NOT MS.

turns out ins. would approve all MS therapy. Am now being denied IV meds.

I dont focus on this, I do spend bit of time weekly checking this blog, some others for "new" info.

After 1yr. of tx I have had minimal improvement. Still only IgM's, still with low CD57, CD2, CD3... low neturophils, elevated lymphocytes, and so it goes.

so- now I AM looking more info. more cases that GET better.

For me, I am SICK and tired of BEING sick and tired. i NEED my life back !!! Type A personality's are not ment for this for sure !!!!

Thank you for this blog. I have been bit doubtfull about the 2 pg list of supplements. Few i find DO make daily difference. B-12, and Zyflamend. Given that zyflamend DOES make a difference I want to understand how to decrease inflammatory conditions internally- think for me this is underlying problem.

Or lately: my thoughts have also taken a turn: So, WHAT else could case WBC, RBC, muscle enzyme changes, bone changes including lytic lesions on painful leg (ortho says is "odd" to have in more than one local. but of course could NOT be cause of ssevere pain)???? maybe something else??? At this point... I really think this is a plausable question !!

My wonderful Neruo who dx. me and has been great since the beginning- just shook his head... "I really just dont know"...

Some days are very hard to not be sick. I do get up every day- I have children and husband who I am blessed beyond measure to have in my life. If not for that... would be hard to find the motivation to move when your pain is seriously indescribale to anyone else. Unless the OTHER person is IN pain,, no body else can ever fully understand... is just a simple truth. We can listen, nod our heads, document what they say as pain decriptives for our medical charts but we DONT and honesly CANT understand- human nature. Sympathize, yes. Empathize, not really

Unknown said...
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Unknown said...
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Unknown said...

my apologies, did not realize my comment posted several times, kept making me re-summit.. but posted. sorry

bobcat said...

"Lyme disease has become his life. There is no time for normalcy. The sick role can become integrated into the disease."

Perhaps this is the case for some people. But my guess is that for the sickest patients, you can take away everything related to Lyme or disease--the forums, the supplements, the schedules--and they will be left with "time for normalcy," but they still won't have normalcy.

It's not time that most of us are lacking, it's our health. We aren't sick because we don't embrace life.

Correlation (between being online more than some patients and not responding well to treatment) does not equal causation, in my opinion.

The sickest, most stubborn patients aren't sick because they're at home, online.....they are at home, online, because they are the sickest patients, who aren't responding.

I think you are wrongly attributing the effects as the cause. When someone gets desperate, that is what you see---desperation.

Unknown said...

No, no, no; yes, yes, yes. Everyone is right here! The more desperate, the more we search to get help, true, true. Not that Dr. J, attributes "the effects as the cause", it's quite the opposite! Seems to me he hopes we try to get as far as possible to help our selves, but he does understands and shares, and relates and empathizes, no doubt. At least you can tell through this blog precisely and when you meet him!! So, no arguing about it, 'course depending on the level of sickness is the attitude and for sure, we, more than many embrace life, ours and everyone's!!!! Take it not as a discussion forum because words are just words, and interpretations depend on circumstances; this is more like recommendations, guides, sharing info, giving medical advise; holding together!!!!

Donk said...

Yes, I think it is mostly desperation that leads some patients into an obsession about their disease. Internet research and supplements are "hope" for them - and the feeling that they still have at least a tiny bit of "control" over the disease that has wracked their lives. We all do what we must to survive - physically and mentally.

Fallen Star Reaching For The Sky said...

If a patient with tick borne disease has become trapped in "the sick role", could some of this mentality be a physiological result of the infection itself (i.e. not purely a psychological response to it)?

Adante Salvagado said...

Since it rained here in DC and dropped down to 40 degrees my lyme has jumped on my back hardcore. There is one long string of muscle, as tight as a violin string, running down my back. I was doing better, I felt, after about 3 months on Amoxicillin and Clarithromycin. But with the cold onset I feel something very familiar coming back. I just started school at Georgetown and left my previous works insurance. I don't know what to do. I am trying to see if the schools insurance would allow me to come in to be seen again.

Teagan said...

I'm currently a patient of yours and very pleased with my progress at the moment.
From a patient's prospective, there is something to be said about leaving things in the hands of Mother Nature (at least in my case), this is the best I've felt since before I got sick.
I previously was treated by another Doc who had me, at one point, on 14 additional supplements and herbs that made me intolerably ill/throwing up etc...I couldn't even handle my meds.
This time around, with almost no additional supps or herbs, healthy diet and exercising when my lyme body permits, I'm feeling better than I ever thought I could. I'm incredibly encouraged. My herx was bad and long initially but then I got better and stronger. I realize many of you are probably very ill and have severe deficiencies where supplementation can be quite beneficial.... I'm just sharing my experience, my body and immune system seems to have taken hold and is kicking Bb's ass right now.
Thanks Doc,

Unknown said...

Thank you for all of the helpful information. I have only just begun the frantic online search for info about Lyme. Hopefully I will not become too consumed by this. This week I got LabCorp results back with CD57 at 32, Lyme IgM .93, EIA Equivocal, IgG P41 and IgM P41 Abnormal, EBV antibodies off the chart >8.0, Chlamydia pneumoniae 1:128 (if that means anything), Vit D 14.7, Mycoplasma pneumoniae IgG Ab 372, HHV-6 Equivocal. I'm wondering if the abnormal P41 band really means chronic Lyme in light of the EBV, HHV-6, MP and CP results. Do I need to pay the big bucks to get the Igenex test to find out if this is Lyme? I have had mysterious, undiagnosed arthritis/fibromyalgia type symptoms for 12 years. Any suggestions?

glytzhkof said...

I am no doctor, but the test results you describe sounds very similar to mine - in other words Chronic Lyme.

In particular the CD57 level is supposed to be a good indicator for when the disease has gone Chronic. They say the level is only suppressed by Lyme or Tuberculosis.

Mom said...

Typical ocd meds don't seem to work for lyme and coinfection induced severe ocd. Anyone have any suggestions on this?

glytzhkof said...

I don't use any specific drugs for the mental problems related to Lyme. Instead I use supplements - and they really do help. Especially Vitamin B complex and Magnesium seems to be effective.

When attention deficit and unrest still gets too bad, I find that the only thing that really works is to get some physical exercise and spend time in calming surroundings. I find that water helps me a lot - whatever form it is in: shower, beach etc... for some reason there is something calming about it.

I would suggest checking with Burrascano's supplement guide:

In fact, if you haven't done so already, I'd read his whole treatment guide:

MJ said...

I have to share that I have learned otherwise. After dealing with my son's chronic Lyme and my biotoxin illness from mold exposure I was looking to minimize the constant doctor visits, relapses and high health care costs. We started supplements and they helped but were very costly. A friend turned me on to Reliv shakes. Two scoops a day, affordable, and bioavailable since you drink them. Loaded with every supplement needed to give you a kick-ass immune system. I finally overcame my mold illness and it gave my son hope with his lyme. Now at college surrounded by germs like mono, strep, etc, the kid that was always the first to catch everything has not been sick in over a year.

Unknown said...

MJ ... I know this is an old blog thread, but I’m wondering if you might see my comment? I am struggling with mold illness and I have tried relive shakes. The problem is I was still living and working in Mold. I want to get out and try the relive again. Whenever I took it I had pretty intense detox reaction to even a half teaspoon.Clouds of candida would come out in my urine. Did that happen to you? I would love to talk about your experience with mold and reliv. I feel like I am on deaths doorstep. Maybe you could email me at