Update on Hubby

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Seibertneurolyme
New Member


Date Joined Feb 2009
Total Posts : 19
   Posted 2/27/2009 11:59 AM (GMT -7)   

I am going to keep this brief and hopefully to the point.

 

I don’t have the time and energy to argue over docs and treatment methods – what works for some people doesn’t work for others. There are many reasons for that.

 

Actually hubby is doing about the best he has in the 8 years since he first got sick. That is very scary because he says he feels like neurologically he is sitting on a powder keg that is waiting to explode. His tremors, myoclonus, dystonia, muscle rigors, and seizure-like episodes are just about the best they have been in years. G.I. issues not quite so good.

 

The real problem is that in November, 2008 Clongen labs found the mystery bug in his blood. No one can tell me if this is the same mystery bug that Fry Labs also found in March and September, 2007. And even more importantly no one can tell us how to treat this unidentified pathogen.

 

Steve and I feel like we are totally on our own in trying to identify and treat this bacteria. Or maybe it is another protozoa similar to babesia – no one knows. Clongen Labs has basically given up on identifying the bacteria.

 

For now hubby is on Bactrim, Zithromax and Minocycline. Has had significant improvement on the herb Cryptolepis and Lactoferrin. Also on low dose Buhner herbs and pulsing HH. But it seems like this bacteria becomes resistant to antibiotics very quickly and nothing is bactericidal – only bacteriostatic.

 

I am convinced that hubby has had this mystery pathogen since he first got ill. Of course there is no way to prove that unless the bacteria can be identified. None of the 25 different antibiotics and antiparasitcs tried to date have eliminated this pathogen.

 

But what worries me is the hydrocortisone he has been on since he last crashed in October 2008 and also the Benicar for the vasodilator effect – causes many side effects.

 

I am spending all my time researching and writing letters to anyone I think may be able to help identify and treat this unknown pathogen. I am totally disgusted and frustrated with the lack of interest most scientists and docs are showing.

 

Most likely I will not be posting on this site again until I have made some progress either in identifying this bacteria or hubby is well.

 

Bea Seibert


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/28/2009 4:56 PM (GMT -7)   
Thanks for sharing Beau. I have heard of others in Az and maybe it was one of my many Dr.s app. that some other bugs were talked about.
It is not surprising that there would be some that have yet to be named. I had never known for 5 years that I had bart. and it was the micro. photos that showed it haning out with the red blood cells I think.
hey franco thinks that you look like Katie Cruise...lol
No that is cool..:>)
I don't know how some one goes about finding a bacteria that is not named.
But it is great that he is feeling well now. And give him time. He has only to get better and learn more as he and you go along. Who knew we would all have such a huge interest and drive to delve so heaily into infectous disease. People who are not sick are like...yeah, yeah marie..enough about lyme...
And I am like...ok...when you get sick from your home in Nantucket.. and you call me after your 14 of doxy sick as hell......I will put you on hold...lol
I mean it is not like a fun hobbie or glamorous...lol
But it is certainly better than any mistery novel out there!
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

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