Headaches

Hi all,

I'm a regular over in the Crohn's/UC forums but wanted to post a question here and get some feedback from the experts.

Last week, I spent a night in the hospital after a large number of lymph nodes in my neck had swollen up around some sort of lesion that had only been getting worse for the previous 10-12 days. I also had a fever ranging from 100-102 for three days by the time I went to the hospital, even though I had been on antibiotics that time (my PCP diagnosed the lesion as impetigo). Finally, I had had a non-stop headache for the previous 8 days, with nothing--including my migraine meds--making it go away.

The docs in the ER suspect I have Lyme, as I did find a tick on my neck a few weeks earlier. I hadn't thought much of it at the time because I thought I had gotten it off quickly and don't remember immediately seeing a bite (and the tick didn't seem that engorged, if at all). I had "gross inflammation" (my CRP was 10 and my sed rate was in the 20s) and some of my other numbers were off as well, although my WBC was normal. I had a lumbar puncture which came back clear.

I've been on doxy since Thursday. The infectious disease doc gave me a 10-day prescription, but my neurologist scoffed at that and gave me three months. I also had botox injections (for my migraines) on Monday.

The good news is that my lymph nodes have finally started to go down and the lesion is healing. The bad news is that I'm experiencing a lot of muscle pain and the headaches have only improved slightly. I take Vicodin, Tylenol, and Advil to manage them, but once my head starts really pounding, I have to lie down for awhile.

Any suggestions for dealing with the headaches and/or similar experiences? I've had headaches and migraines for half my life, but the last two weeks have been really debilitating.

Hi

welcome to the Lyme forum Vitaka!

I'm sorry you are dealing with this infection too...

I have a long history of headaches: tension headaches, normal headaches, 3 dag migraine attacks, migraine auras, cluster headaches.
I have to admit that I haven't found the wonder cure yet.

Topamax can help: my sister is doing really good on it, I can't tolerate it. Propranolol can help too.
Last week, I was able to stop an upcoming clusterheadache with a mix of paracetamol, caffeine, aspirin and ibuprofen. It was my sister who adviced me to give the mix a try. But you need attack it quickly, when it's coming up, not when it's already fully there.
As for the normal headaches: I learned to live with them.
I see an OD for the tension headaches. He takes away the tension in my neck and back, and it helps a great deal.

I just started feverfew for the migraines. It takes a while to work, but I hope I get help from it.

@elektrikhd: prednisone is a drug that is sadly not good for Lyme sufferers. We already have a weakened immune system, and corticosteroids will suppress our immune system even more. It can be necessary in some situations, to 'break' dangerous inflammation, but it will not help you combatting Lyme disease.

MarieLS

Hi Vitaka!
Welcome to our side of the site!!
I would suggest that due to your medications (mainly Remicade), testing may not be successful, but if you would go to our "New to Lyme? Start here!" thread, it has symptom lists that you can compare to your symptoms and see if they fit.

In my opinion, anyone that has conditions that kind of require them to be on medications that suppress the immune system and suspect that they have tick-borne infections as well, need to be sure to see a very well qualified LLMD to get the extra help they may need to overcome these infections.

I think I like your Neuro though! Is he Lyme Literate, meaning has he had training from ILADS (International Lyme and Associated Diseases Society)?

These symptoms combined with a recent tick bite are surely a concern though! Babesia often causes a lot of daily headaches for people and for me, they brought on a lot of migraines too!