Monday, July 8, 2013

Lyme and killer headahce

My 52 year patient felt she was a failure in life when she saw me 5 years ago.  Before that (in her previous life) she was living the "American Dream."  Gregarious, vivacious and outgoing  -  she was the life of the party. Barbecues on the deck were a regular occurrence. To escape the stress of daily life and raising three kids she was passionate about her hobby, gardening.  She was frequently seen pruning and trimming her exquisite landscaping, the envy of all, late into the night. Then at age 44 she developed headaches, diagnosed as migraines. It seemed odd that migraines would suddenly appear in midlife --  and there was no family history of migraine. The headaches became more frequent and unbearable. They robbed her of all quality of life. She went to numerous doctors ultimately ending up in pain management taking narcotics which barely took the edge of her progressing misery.

The parties stopped, as did the gardening. She could not work or help the kids with their homework. She had other symptoms too. She had drenching night sweats and trouble moving. It was an effort to move her legs to get out of bed in the morning. Her body hurt: her hands started swelling. She wasn't just tired. Words don't describe the crushing weariness she experienced. She just wasn't thinking as clearly as she used to. Her once sharp memory was now dull, and getting duller. She became depressed. Antidepressants offered little relief: at times she contemplated ending her life.

What the hell was wrong with her she thought. A neighbor still gardened avidly and went to the PTA meetings. She had simply fallen to pieces. She thought she was weak, a failure and somehow it was her fault. Doctors pretty much told her as much.

When she finally shared with me what had been going on I asked her if she knew anything about Lyme disease. She did not.

Let my digress for a moment.  Now that I "specialize" in Lyme I can no longer help others like her  --  falling thorough the cracks or perhaps off the cliffs;  caught in a medical system which is blind and deaf.

Ultimately I convinced her to proceed with my recommended treatment for Lyme disease.  It helped. But she never took the medications long enough because of side effects. Despite suboptimal therapy, sweats got better as did the brain fog. Fatigue and depression were a little better.

Headaches --  not so much.

Over the last year, at my behest,  she has been receiving Botox injections every 3 months. She is better but the headaches are still killers. This means there are fewer trips to the ER and less days in bed.

I talked her into trying hyperbaric. She went in despite claustrophobia. Only one day later, she felt miserable with a Herheimer, lasting 3 days. One week later she reported  her headaches are better and she is very excited about continuing hyperbaric oxygen therapy believing this may be the final bullet in the war against her migraines.

I am also hopeful that the combination of hyperbaric oxygen and low dose antibiotic therapy, which she is able to tolerate, will get treatment for her Lyme disease back on track as well.

4 comments:

conny said...

Can you tell us what your treatment plan consisted of? Severe headaches and pain behind the eyes are the primary symptoms my husband has been experiencing for more than 2 years.

MuonGlue said...

Lymphocytic (autoimmune) hypophysitis? Develops slowly or suddenly, affects one hormone and maybe not another? It can be insidious and more common that physicians realize. Got a headache? Pain behind the eyes-pretty darn close to the brain..with inflammation. Seems reasonable to have your (hypothalamus) pituitary hormones tested.
The infections must be treated, but the autoimmune pituitary could be a reason why the hypothalamus pituitary axis gets so deranged in Lyme patients.
And why isn't every neuro-Lyme patient treated like a tertiary neuro-syphilis patient? It is bizarre logic to not acknowledge that treatments fail for both.

Sarah Morley said...

I was first diagnosed with Ideopathic Intracranial Hypertension 7 yrs ago, just 2 mos after pulling an engorged tick off the back of my neck. However, I did not make the connection. I went on to develop worse headaches, including migraines, & neuralgia. Also all the other neuro symptoms like ringing of the ears, cognitive problems, etc. But never the papiladema so characteristic of IIH. I also developed muscle & joint pains, nerve pain in legs, & other symptoms drs couldn't explain. After 4 yrs someone put me on the Lyme path. I had 2 drs order the elisa, both came back equivocal. Just recently a new dr ordered it with Western Blot if indicated. The elisa came back pos, still waiting on the WB. 3 yrs ago I was given 2 wks of Doxy by 1st dr & 4 wks of amox by 2nd dr; then they said, it must not be lyme since you're not better. Wished I could find an LLMD here. Not sure what the new dr will do. But the infectious disease dr told my neurologist that there is no possible way I could have lyme in Spokane. =(

Tiggerkat said...

@sarah. I would print as much applicable info from the ILADS website to take to your doc.