Back After a Full, Two Year Remission

Information about how to manage or reduce the severity of BFS symptoms

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Back After a Full, Two Year Remission

Postby biofed55 on February 26th, 2015, 1:18 pm

[img][*][/img]I'm a physician who last posted here in 2012. Both my wife and I developed symptoms at around the same time and eventually got better after a 12 week course of doxycycline, presuming that we had Lyme Disease. For the past 9 weeks, after a stressful period, I've had a recurrence with cramps and fasciculations; and perceived weakness and pain in my feet, hamstrings and buttocks upon standing. Best position: feet elevated. Negative Neuro exam and EMG. No spinal stenosis on MRI, arterial Doppler negative.
My wife, who is a very calm, well-balanced person, is also reporting milder symptoms again over the past few weeks; mostly some twitches. I don't suspect any psychogenic component in her case.
We both started doxycycline again, because we previously improved at the same time on that medication during our first episode from May-December, 2012.
I'm wondering if our case suggests a viral or other infectious etiology for some cases of BCFS.
Also wondering dose ranges for any Tegretol success stories.
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Re: Back After a Full, Two Year Remission

Postby mwagner on February 26th, 2015, 7:28 pm

How crazy coincidental that you and your wife are getting symptoms at the same time. And strange that it appears bacterial. Were you both bitten by ticks? Why did you think Lyme disease in the first place?

I always wonder if I have Lyme because the few times I have been on antibiotics since this all started (in 2011), my twitching subsides. It's very strange. But, I live in Colorado where this is presumably no Lyme disease.

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Re: Back After a Full, Two Year Remission

Postby biofed55 on February 27th, 2015, 4:43 pm

Hi Mitra,
Thanks for responding. Lyme was actually suggested on an ALS board, when this all started for us in 2012. No one really knows the etiology of B(C)FS, so perhaps some cases are of infectious origin. All the best.
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Re: Back After a Full, Two Year Remission

Postby Ghayes420 on March 2nd, 2015, 6:54 pm

nice to hear from you biofed55. I remember your case well from a couple years ago. Thanks for checking in.

I really wanted to try a course of dxy myself as this all started for me about a month after I was bitten by a tic but Mayo and every other doctor are telling me this isn't a dormant Lyme infection and certainly not Lyme disease. So I don't know.

I still am keeping all options on the table and I am curious if you again try doxy.

Instead of Tegretol, try looking at its newer cousin, Trileptal. Tegretol can lose effectiveness over time where Trileptal seems to avoid this.

Please stay in touch.

-Greg
A very proud fasciculator since 8/14/2011. :)
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Re: Back After a Full, Two Year Remission

Postby biofed55 on March 2nd, 2015, 7:41 pm

Hi Greg, Thanks for replying. Yes, my wife and I both restarted doxycycline at 200 mg twice a day and we'll do a 12 week course. Mostly because we both got completely better, at the same time, after doing it 2 years ago, and I don't see much down side to doing so. Best wishes.
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Re: Back After a Full, Two Year Remission

Postby Ghayes420 on March 2nd, 2015, 10:29 pm

Thanks again for the feedback biofed55. Please report back to us after this next round of doxy. I always wondered about trying it, but have been unsuccessful in convincing a doctor to prescribe me doxy for the fasciculations. Which is frustrating.

If this works again for you, I may have to fly to your practice for the script. :)

Keep us updated and best regards to you and your wife.
A very proud fasciculator since 8/14/2011. :)
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Re: Back After a Full, Two Year Remission

Postby BFSBurger on March 11th, 2015, 8:45 pm

Please keep in mind that doxycycline is a potent anti-inflammatory drug.
http://www.ncbi.nlm.nih.gov/pubmed/21350981
It is *NOT* just an antibiotic.

Re: Lyme
Despite what the kooks say (and there are a lot in the Lyme world) if you are not testing positive for Lyme on the appropriate tests, you do not have Lyme.
Likewise - it is commonly accepted knowledge that one two-week course of doxy is sufficient to treat Lyme. Doing it twice would have no effect, if this really was lyme, and symptoms should not return 2 years later.
It sounds like you got the Lyme idea from a discussion forum, but have not done any of the appropriate bloodwork. An antibody followed by a western blot at the very least. A PCR to confirm.
If you want to be extra thorough, get the C6 Peptide Test for Lyme offered through Quest Diagnostics. LabCorp doesn't offer it. If that comes back negative, then no Lyme.
http://www.ncbi.nlm.nih.gov/pubmed/17180348

Doxycycline made me feel great while on it too, but then I had a severe rebound after coming off it.
Research the anti inflammatory effects Doxy has on the immune system. Its very potent.
http://www.ncbi.nlm.nih.gov/pubmed/20021425

I don't see much down side to doing [antibiotics].

Read this: http://www.npr.org/2014/04/14/302899093 ... any-favors
And this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3950275/

Please be extremely careful with these long doses of antibiotics. They do long term damage to your gut. This is a known issue now and well-recognized. The overgrowth of C Diff alone can cause problems for a long time. At the very least you both should be ingesting:

1) Plain sugar free yogurt daily
2) Kefir Milk daily
3) A multi pro biotic capsule or two daily
4) Most important: Saccharomyces Boulardi to prevent C Diff overgrowth during and after treatment with antibiotics.
See: http://www.ncbi.nlm.nih.gov/pubmed/20011734

There is definitely some theories flying around that BFS is pathogenic in nature, but its a master at screwing with your head in that regard. I have been cured myself for quite some time now, yet I can bring it all back with stress. This is a hallmark of herpesviruses which lie dormant until triggered by certain foods and stress levels. Its anyone's guess. If I was a doctor i would be taking advantage of the ability to actually run endless infectious disease tests without having to ask permission. But that's just me.

-B-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Back After a Full, Two Year Remission

Postby Rainyjane on October 11th, 2015, 8:16 am

Make sure you're not drinking aspartame. It brings on MA like symptoms. It can be something that simple! See my post. Have you both been dieting? Hugs.
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Re: Back After a Full, Two Year Remission

Postby Rainyjane on October 11th, 2015, 8:16 am

I mean MA
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Re: Back After a Full, Two Year Remission

Postby Rainyjane on October 11th, 2015, 8:17 am

MS!
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Re: Back After a Full, Two Year Remission

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