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Tuesday, November 10, 2009

Lyme kills

February 2007. A 46 year old female walked into my office for a "Lyme consult." I did not know at of our meeting-- she had recently been found in the middle of a road trying to end her life. Luckily, she was picked up by a police cruiser and subsequently admitted to a psychiatric facility. I did not know, until today, that a past treating physician, a rheumatologist, had called her an " moron." This patient/human being, has had a long and bumpy ride, but no longer entertains thoughts of suicide. She was sick of being sick. She had been sick for one half of her life, since age 24. She had suffered with total body pain. She had been diagnosed with "seronegative" rheumatoid arthritis. Gold shots, prednisone and other "remedies" offered no respite from her misery. She had swollen lymph node. Her joints and muscles hurt--really hurt. She was told she had "a weak immune system." She had numerous neurological complaints. There was progressive loss of memory and global cognitive function for over 15 years. Most troubling of all was severe, unrelenting abdominal pain. This was her worst symptom. Numerous specialist had been unable to identify the source of the trouble.

Prioritising, the first thing I did was examine her belly. She had right upper quadrant tenderness and a positive Murphy's sign. Gastroenterologists and surgeons insisted there was nothing wrong with her gallbladder. Sonograms and HIDA scans had been abnormal. I sent her for another HIDA CCK test: normal. I told her she had a bad gallbladder--I didn't care what the tests said. Two surgeons refused to operate. A third ( a close friend) reluctantly agreed. Her gallbladder was bad--chronically infected. Her pain was gone! Now she thought I was a genius. No. I have just seen chronic cholecystitis in many Lyme patients. And her physical exam was classic for cholecystitis. I followed a rule one of mentors taught me back in medical school: treat the patient not the lab. I quess most doctors today had a different mentor.

She was seropositive for Babesia at the outset. The Labcorp Western Blot showed no bands. Her Igenex test negative although IgM bands were "inderterminate" at the 39, 41 and 93 positions.
Treat the patient. Rocephin. She Herxed. We went around the block--numerous times. Gradually, after much Mepron, a mix of oral antibiotics and two courses of Rocephin she was significantly better.

We(she) struggled with serious nicotine addiction: 3 packs per day. She ended up with a severe lung infection. I prescribed Levaquin and Cleocin. The Herx brought her to the hospital. It looked like a cavitary mass or abscess. This was February 2009. The surgeons were sure she had a tumor. The biopsies showed no cancer and no microbes would grow in the lab. Faint colonies were seen only to disappear. The surgeons still wanted to operate. Two PET scans later-- no cancer. She had a miracle response to Ivanz. I have written about this before. The pulmonologist gave her months to live(she tells me), severe COPD. I don't think so. She is not short of breath even with moderate excertion. Maybe he is just trying to scare her.

Today I saw her. She is depressed because she retired from her job (voluntarily). She cleans houses part-time! Her pain is mangaged with modest help from "our friends". Good days and bad days. The bad ones aren't that bad. She is nervous: another PET scan. She wants to quit smoking--just can't do it.

I never knew about the suicide attempt--until today.


Max said...

I had a suicide attempt too - took 30 percocets, 20 ativan, and drowned it iwith tequila .

Was hoping for respiratory arrest, was afraid of liver damage. -neither happened ( DRs wouldnt believe me what I took -since the labs didn't show massive liver damage they said I should have had from so much acetaminophen -I only had mildly elevated AST/ALT, but not in the acute liver failure range)

I did not know what was wrong with me , was just tired of all this crap.

Now I am actually feeling physically worse, but at least I know it could be due to TBD (I was igenex postive, and quest igm positve- but I dont believe everything is lyme -could be many other infections) , so I'll fight
it - I have a target now.

MJ said...

I just feel so much pain understanding how much pain and suffering this human being has had due to ignorance of an illness that should be known by every Doctor and medical personnel from this country. Imagine a Doctor in Africa who hasn't hear of malaria? This is cruel, unfair and brutally painful. I just can be extremely happy someone with a sensitive heart heard her story and believed her and tried to help her giving her value as a human being that deserves medical care as the constitution and all the "fathers" state here and everywhere in the world. I just say "Alleluia" she is on her way of less pain and suffering, and I'm here sending her my support, and to you my Doctor I am sending you lots of respects with lots of gratitude for all you do. I live far and can't go to the office, but the one time I went I felt I was not alone anymore and just that started my way to a possible recovery, is that too much to ask to any Doctor? It is not that their mentors were different from yours, it is that they do not care what their mentors said; it is 5 minutes for a patient, who cares?

Michele said...

I had to see a neurologist today. The consult was ordered by my lawyer. This local neurologist (Maryland) could not understand how I could get Lymes disease from my job knowing that my job had me working outdoors in forested areas daily. I kept telling him it was from a tick bite. He never did connect the two. How this level of ignorance continues to exist baffles the mind. I had total body pain that no amount of meds would help. I thought my body would shut down from the pain. I can understand this patients suicide try. Many of us can. I sure hope and pray this patient gets better and can find some hope to keep on going.

Michele said...

Read your post over again and was brought to tears thinking what this woman has been through. Wondering how she finally found you. How many others are there? Sorry to say that I bet there are many like her. As mentioned, if a neurologist in this area (now the third worst for Lyme) cannot even connect the dots from my having a job that sent me outdoors into forested land and how I got Lymes disease then how do we hope for the doctors to become educated? How are they so obtuse to what is in front of their eyes?

Bea K said...

There but for the grace of G-d go I......

Thank you Doctor for your compassion. I am just starting my Lyme journey after many years of different or no diagnoses. Even with the help of my "my friends" it can still be almost unbearable at times.

Even though my PP did not diagnose my Lyme, he has always been compassionate. He knows I am in pain and continued to try different tests and oblige me when I wanted to see specialists and try different things.

When a rheumatologist told him in a recent report he could find no basis for my "perceived" pain and fatigue, my doctor turned to me and said, "I have always believed you."

He may not have been able to find the cause of my symptoms but he validated my pain and suffering. That in it's self means a lot.

Anonymous said...

Adding insult to injury of those of us with Lyme by the medical professionals just has to stop!

I keep trying to educate those I worked with but most falls on deaf ears. They still make hurtful comments about the "normal pains of aging" or "depression" having something to do with how I feel.

I just don't know how we get around this.

Anonymous said...

To those of us with Lyme, not of

Some congnitive problems today

glytzhkof said...

Reading through the comments and based on my own experience, it seems that once Lyme has gone chronic your life turns into a ridiculous emotional roller-coaster that doesn't make sense to anyone, not even yourself.

The eternal cycle of depression, sadness, anxiety and anger within a short time frame has madness written all over it.

Lyme must be caught early if it is to be treated successfully and all the weirdness is to be avoided.

If only the available Lyme tests were fully reliable, I think a lot of the other problems would be easier to resolve.

Thanks yet again to LymeMD for another great post.

LYMEMJ said...

If only Lyme were caught it any stage; but how many are there not even having a remote idea of what is that huge load of pain going on because their Doctors ignore and dismiss the symptoms and the illness itself? Not easy! At least Bobbi's Doctor cares and believes his patient, that is a lot to begin with, hope he got to read this blog to educate himself!

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