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Posted 1/13/2011 10:15 PM (GMT 0)
Hello I would love to hear a success story from anyone who has been down this long road of treatment or if you know of someone invite them to share.
Posted 1/14/2011 12:22 AM (GMT 0)

hi bucci, and all,

the only success i ever 'see' happening is with stem cell therapy.

this woman dr in india is doing amazing things.

i could never have an abortion, but i know the reality is that many do, and this is a viable source of stem cells, that is typically disposed of.

personally, i feel that if the technology and resouces are available to help people, then there is an ethical obligation to do so.

http://www.globalpost.com/dispatch/india/091009/unfettered-regulation-india-pulls-ahead-stem-cell-treatments

http://healthcarehacks.com/another-lyme-disease-patients-embryonic-stem-cell-experience

or stem cells from umbilical cord blood, http://www.examiner.com/lyme-disease-in-newark/stem-cell-treatment-for-lyme-disease

mexico, japan, germany, china... are all doing stem cell therapy with success.

Post Edited (bauhaus) : 1/13/2011 5:35:40 PM (GMT-7)

Posted 1/14/2011 1:50 AM (GMT 0)
Hope much $$$ and how long it holds. Has it been going on long enough to see 2 yrs later still good? Also, I couldn't figure what stem cells are good for who?
I thought you need your own.
My doctor is doing it now on himself and he told me to save up $50,000
Posted 1/14/2011 2:05 AM (GMT 0)
There are other sources of stem cells besides aborted fetuses...I really, really wish more research was being done on these alternative sources...
Posted 1/14/2011 2:24 AM (GMT 0)
Well Injust tried reading about one girls experience in India and am whipedmout. If she could have left out her shopping trips
In detail and stuck to treatments it would help.
I am gonna go see my doctor here in couple weeks and get the skinny on where and how this works
The part I really don't understand is how does this get rid of all these bacterias? Isn't the stem cell just about the damage done?? Is this like getting a liver transplant while you still have hep.c ?
Posted 1/15/2011 12:28 AM (GMT 0)
I know two people who are doing fine-- 2years later--- after treatment with only abx.

They were not long term sufferers nor were they on long term treatment.  But I thought I'd mention their success anyway.

Neither person got a bullseye rash-- had no idea they had Lyme.

Person #1 developed Bell's Palsy. Did a standard 4 week course of Doxy.

Person #2 had extreme fatigue, headaches and could not walk due to vertigo/imbalance. Inititally tested negative for Lyme. She then went to one of the doctors featured in 'Under Our Skin' --- did a 4 month course of Amoxicillin.

Neither person has had a relapse--- both are leading normal, healthy lives.... so far.

 

Post Edited (Cat111) : 1/14/2011 5:31:37 PM (GMT-7)

Posted 1/15/2011 12:44 AM (GMT 0)
Thank you Cat. So I guess if you catch it quick you don't have to treat every confection seperately? I wonder if they tested for everything.
Posted 1/15/2011 12:47 AM (GMT 0)
I have had lyme for 3 years now and on treatment for 29 months. I am now starting to feel better and more like myself. I am on abx and suplements. I do notice that if I forget to take my abx for a few days I start to go backwards. So i hope this isnt a life long abx treatment. but overall I am doing 80% better....
Posted 1/15/2011 1:37 PM (GMT 0)
Hi Bucci...

I'm not sure what all they were tested for but neither person mentioned anything about co-infections to me. In fact, they didn't even know what a co-infection was.

But you'd think that getting Bell's Palsy and imbalance/vertigo would indicate a reasonably advanced infection--- stage 2 ?????? --- one that wasn't caught and treated all that soon.

I wonder....and am all the more curious as to what 'soon' even means in regards to this insidious disease.
Posted 1/15/2011 2:11 PM (GMT 0)
Then why don't the doctors treat everyone with successive rounds of ABX and go after the co-infections at the same time?

THAT seems to make the most sense. I really don't understand why treatment gets withheld.

Is there more money in the treatment/testing for ... anything else ... ?
Posted 1/15/2011 2:58 PM (GMT 0)
Not everyone has all the coinfections.

Babesiosis can be very expensive to treat (requires anti-malarial medications).

Lyme and coinfections create very unique and individualized presentations...thus, carbon-copy, rubber stamp treatments will only usually work for some people (not the majority, either)...treatment therefore must be customized. To customize treatment, more detailed testing sometimes is necessary.

The timing of the testing is important, because if one is new to lyme treatment, their immune system may still be suppressed to the point which none of the coinfections they may have will be detectable on the tests. Furthermore, the tests for coinfections are not perfect and often miss an infection because of the multiple strains out there of each coinfection, but tests are usually only looking for or able to detect one or two of the known strains...much more research is needed to understand all the variables and intricacies of lyme and coinfections.
Posted 1/27/2011 1:30 AM (GMT 0)
Just spoke with one of the people I mentioned earlier in this thread who is a success story.

She went to Dr. C. in Westchester, NY....and he put her on 3000 mgs of Amox. per day.   She started with that dose for about three months....then when she tried to wean off of it, symptoms came creeping back. 

She then did another round of 3000 mgs. Amox. per day for another several months.

It is now 4 years later (I was wrong when I said it was 2) and she only gets occasional fatigue which she attributes more to being out of shape and busy with kids/family than Lyme stuff.

I asked her if she felt she was 'cured' ......and she said yes. 

However, she does not remember exactly when she was infected. 

Her eventual symptoms were extreme fatique, vertigo/imbalance + brain fog. 

 

Posted 1/27/2011 3:42 AM (GMT 0)
I love to hear success stories, thank u! Lisa
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