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Cluster Headache Help and Support >> Cluster Headache Specific >> Lyme disease and chronic clusters
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Message started by Garys_Girl on Oct 29th, 2014 at 2:11pm

Title: Lyme disease and chronic clusters
Post by Garys_Girl on Oct 29th, 2014 at 2:11pm
It's only taken six years to pin down what is most likely happening to Gary with these crazy fevers. But that's par for the course, it took seven to figure out he had cluster headaches.

When I first posted about his intermittent, hectic fevers, many were skeptical, and thought I was trolling. Or that he had serotonin syndrome.

...but now it all makes sense. And this would also explain why the anti-inflammatory treatment didn't work, and somehow, potentially why oxygen doesn't function as an abortive for Gary. A complicating factor.

A tick bite. Lyme disease and co-infections. Bacterium that hide in the cells, and evade our immune system.

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And if this is correct, the bouts of Bell's Palsy he experienced in 2001 / 2002 could be related, and over time, the assault on his body impacted his clusters, causing him to become chronic and drug-resistant in 2006 vs the sporadic attacks he had (probably episodically, though not clear patterns we observed at the time) from 1999 through 2006.

So if you are in an area with ticks, please be aware: less than 50% of people with lyme were aware of being bitten by a tick, the tell-tale "bullseye" rash is NOT a "requirement."

If you have experienced a change in your cluster activity, find that you are drug-resistant when previously you weren't, or if you do not respond to the anti-inflammatory regimen, assess all of your symptoms. Consider lyme as a complicating factor.

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Unfortunately, for many, an aggressive course of antibiotics is not enough. Not even close. Here is a well-written overview: free on Kindle or with a Kindle app.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE


Title: Re: Lyme disease and chronic clusters
Post by Jeannie on Oct 29th, 2014 at 3:48pm
First off... It's good to hear from you!!!!   Sorry Gary is still fighting this battle. I'm hoping that now that you guys may have a handle on what's going on you can get ahead of it! 

Title: Re: Lyme disease and chronic clusters
Post by Rumeke on Oct 29th, 2014 at 8:21pm
I have two daughters and a granddaughter that have tested positive for Chronic Lyme so I feel your pain. Have his blood tested by IGeneX in California for confirmation. Local tests by LabCorp etc are NOT accurate. As far as the D3 regimen I would at least have his D25 tested and I'll bet it is low. My girls all have very low D because Lyme is an autoimmune disease and eats up any D reserves.

Good luck with your search for an answer. Chronic Lyme can present with many different symptoms as do any co-infections he may also have from the tick bite.

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