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S.E.

Sorry about the last one

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After 16 months of chronic CH 4-6 times every day and going thru all the meds( including five days I'd DHE push infusions and 10 tanks of O2 w the cluster buster mask) nothing would help. I was scheduled for a five day infusion of karotine and saw the NG video by Dan and I busted w 3 grams five days apart and they stopped!  I was on a 45-50 day schedule and waited for my 3 am wake up each time and it worked for 8 months. Then in a middle of my schedule I had terrible headaches and the dose didn't work?  Then it turned to high fever and chills and soaking night sweats. I had a large rash appear on my flank and now have Lyme Disease. Even after the 30 day Doxycycline treatment Im still getting headaches for over three months with no help from busting. Has anyone out ther had a tick bite w Lymes Disease and also bad CCH?  After seeing a Infectious Disease Specialist he says the only way to see if the Lyme has penetrated the blood brain barrier is to have a lumbar puncture ( spinal tap) and have scheduled it. Two of my six neurologists I've seen have brought it up but never followed thru with it for my clusters. Anyone else have one?  I can't thank everyone out there enough and hope all are finding relief. SE 

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Hi S.E.

Damn!  What a terrible situation!

I've been a part of the board since it went live in Oct of 2009 and can't recall any posts regarding lyme disease along with cch!

Nice to see that yet another clusterhead benefitted from our own Hipshot's participation in the NG documentary!  My good friend Hollywood Dan has saved many lives in doing that video and is an absolute hero to the clusterhead community!!

If you're not already using the anti inflammatory vitamin D3 regimen, I'd recommend trying that as it works very well for many folks!

Wishing you the best of luck!

Dallas Denny 

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Thanks Dallas Denny I can’t believe this situation I’m in and will post anything I think could help someone as I seek help. I had a feeling the chance of someone having CCH&Lymes was slim. I spent months before being diagnosed with CCH and can’t take any chances with Lyme complications which have their own complex problems and my infectious disease docs weren’t farmiler with dosing?  I have been on the Batch D 3 plan since last September and it hasn’t helped?  I seam to fall into the 10% who don’t get relief with many of the things I read about. SE 

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Have you been in direct contact with Batch and what is your 25 (OH) D reading?

The sweet spot for most folks is around 85 ng/ml.....if your blood tests have reached that threshold then I would suggest that you send Batch a PM here and see if he has some tweaks to the regimen for you!

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Using the commonly cited lifetime statistics of 1/1000 for clusters and 1/100 Lyme then maybe 3,000 Cluster sufferers with Lyme in US .  Some small portion of that would have both active Lyme and Cluster symptoms so not common at all. 

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