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Thursday, February 28, 2013

Go to church

This 37 year old office manager says she hasn't felt well for half her life; and she's pretty angry about it; and for good reason.

She believes she has been sick 1/2 her life. She had mono when she was 15 and says she never completely recovered. She continued to have chronic fatigue, punctuated by bouts of  fever, malaise and flulike symptoms. Her doctors said she was healthy. She knew little to nothing about Lyme disease during those years.  In March 2009 she went to her family doctor with a small tick imbedded in her back and asked him to remove it. He immediately told her that this small dark tick was not a Lyme tick. She was taken aback; the thought of Lyme disease had not occurred to her. She got sicker than usual: more fatigue and dizziness. One month later she returned to the same doctor. Three weeks after the last visit she found a tick attached to her thigh and now she had a rash. The doctor opined that the rash was too soon for Lyme disease. He prescribed one week of doxycycline to cover his bases.  He ordered a Lyme test which was negative, confirming his original impression.

Then she became much sicker:  fevers and malaise, joint pains and swelling, increased fatigue and cognitive problems. Her doctor told her that nothing was wrong, it was a spiritual issue, and that she should go to church.

Over time she had the kind of fatigue that makes it hard to lift your head from a pillow. She developed psychological symptoms: irritability, mood swings with emotional lability, an inability to focus or get much done. With increasing memory loss she had confusion and disorientation. Anxiety, and then panic attacks became prominent. Other physical symptoms intensified:  night sweats and fevers, headaches, tingling sensation, a feeling of bugs crawling under her skin, weakness making it hard to walk at times, generalized pain with more joint pains with swelling, chills, insomnia, weight loss, cold intolerance, blurred vision and other strange changes in vision, ringing in the ears, painful and swollen glands, air hunger and more.  She seemed to have everything on the expansive list of  possible Lyme symptoms.

Her family doctor reaffirmed his prior diagnosis: there was nothing wrong. He repeated blood work including a Lyme test - everything was normal.

She came to the diagnosis of Lyme on her own, as so often happens; then she came in to see me.

After 18 months of intensive treatment for Lyme disease and coinfections, she has improved tremendously. Her life is back.

Fantastic news. A pending bill in Virginia will require all doctors to inform patients about the pitfalls of the test whenever they order a Lyme. Hopefully this will inform doctors as much as it does patients.


Debsnature said...

Your blog always gives me invaluable knowledge and reassurance from a truly dedicated doctor,and I'm grateful for your endless search for greater understanding. As I read the countless examples of people like me living through the nightmare realities of diagnosis, treatment, and complications, I am comforted to know I'm one of many. With no malice but concern for the many others to come, I can only hope the patient posts her experience on an Internet doctor rating site. This kind of treatment is just unconscienable, no matter what large, powerful teaching hospital backs it. Thank you for all your dedication and perseverance.

Anonymous said...

I'm very sick with neuro Lyme as well. Feeling dizzy for over a year! Along with tons of other symptoms........ After 4 weeks of IV rocephin I lost my GB and was switched to oral abx. After 10 moths of that I was finally put on vancomycin thru a picc line. This has been my treatment for the last 3 weeks and I have 3 more weeks to go. My LLmD keeps calling this "the last resort"....... Very scary since I'm still dizzy!!!! Is this really the last resort???

LYMEMJ said...

If this was a person who still had the tick attached and the Doctor dismissed her and neglected her, imagine the rest of us who went to see a Dr without having the rash? We are very proud of our Lyme community who were able to get that Bill passed in Virginia and we hope we can do the same for the rest of the country, but, i wonder what can we do to obligate Doctors to accept there is Lyme Disease in this country and it is causing so much suffering?

LYMEMJ said...
This comment has been removed by the author.
LYMEMJ said...

To IT IS NOT THE LAST RESORT, maybe the last time you see that Doctor! Consider treatment for PARASITES IN THE BLOOD, ORGANS AND INTESTINAL, also flushes for the liver and intestinal blockages. Look for alternative treatments to treat fungal infections - mold- viruses, bacteria and parasites. Look for our Lyme community in Facebook, we grow due to Doctors and medical community negligence, contact me MARIA LYME DISEASE. Never surrender.

Verity said...

I have Lyme Disease. I think Babeosis. I am very sick. I had Lyme in May - '11 but with Doxycycline got through it. There are no LLMD's in the area where I live and I simply do not know where to turn. I am so weary of it all. I have the heat flashes. The small red spots, I feel horrible. I thought I had found an LLMD and last week drove 15 miles only to be in a cold waiting room for 3 and a half hours and then have this odd, screwball Dr. run in and out and insulting me until he finally said he couldn't help me. I asked why, his answer? "Because you're convinced you have Lyme and I'm not, so I cannot treat you". I think the man is in some other world. I had my tests to show him but he wasn't interested. I have called almost every Dr. in the area, to no avail. I need help and do not know where to find it. I have lost 14 lbs. I did find a PA who didn't know much about Lyme but did prescribe Mepron and Zithromyacin. I have just finished the 2nd bottle of Mepron but couldn't take the Zithro (did for 3 weeks) because it slows the heart down and I have a mitral valve prolapse which I take Inderal for. I have no Dr. the PA did not want to be bothered because of lack of knowledge. Can anyone suggest anything?? I would be most appreciative.

Unknown said...

Verity, have you looked for an online support group in your area? When I found and joines my group, they sent me a list of llmds that the group members had compiled. Also Facebook is a great source for support and information. Email me if you would like to talk further.