quote:

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Originally posted by Dogsandcats:
Have you ever been able to try IV's? Would it be possible to try without putting the two year requirement on? You might not need that long.

Just thinking.....

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I agree. Try it! Do you have insurance? If so there is a way that insurance often will cover it, even though they say they won't. I'll go into it, if you do have it.
 

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Posted by phyl6648 (Member # 28522) on :
 
Haven't tried IVs, couldn't afford the llmd nor the IVs. I have medicare and the doctor doesn't accept it, nor will medicare pay since the dr doesn't accept even if I file .. The doctors that accept medicare only do orals..

If I see a GP they won't do IVs unless I am put in the hospital then only for a day or two .

Hoping my esoph. will get till I can do orals again.. Out of all the abx I have tried clindamycin has been the best.. Why?? not sure.

Thanks for your input.
 

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Posted by Phoiph (Member # 41238) on :
 
phyl6648...

"I do know there are success stories but after 15 yrs I am getting so discouraged as I don't know where to turn for help.. "

Have you read the Mild Hypebaric thread?

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125201
 

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Posted by Robin123 (Member # 9197) on :
 
Oral clindamycin 150mg a couple times a day worked for me for 5 years, then it stopped working - probably the bacteria mutated. However, clinda still works for any other infection. It's bacteriostatic, not bacteriocidal. It stops the RNA duplication, I think.

Now that I'm not doing clinda anymore, turmeric helps me keep the inflammation pain down such that I'm fairly comfortable. I get it in bulk at the healthfood store and dip empty size 00 capsules into it.

Teasel root tincture also has some press - I just mention it for you to maybe check it out.
 

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Posted by phyl6648 (Member # 28522) on :
 
Robin I take Curcumun 500 mg which is the same as turmeric .. The pain I have, the deep bone pain but its the horrible fatigue and no energy plus other symptoms that is coming back in full force, also the depression/anxiety and the fact that I fear being housebound again.. Fear and where to go from here..

Maybe I should accept the fact that this is as good as it will be..
 

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Posted by GretaM (Member # 40917) on :
 
Phyl-going
Sorry you are going through this

Is it possible to get oral liquid suspensions of antibiotics?

Like they do for kids or those with feeding tubes?
 

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Posted by Phoiph (Member # 41238) on :
 
phyl6648...

I had all of the symptoms you describe (and many more) and was homebound for 5 years straight with no glimmer of hope for recovery...even LLMD's gave up on me, however, I am 100% well now and med free.

So...there is hope...never "accept the fact" that this is as good as it will be...but after 15 years it might be time to consider a different route...which is why I suggested reading the thread on mild hyperbaric...
 

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Posted by Rumigirl (Member # 15091) on :
 

quote:

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Originally posted by Phoiph:
phyl6648...

I had all of the symptoms you describe (and many more) and was homebound for 5 years straight with no glimmer of hope for recovery...even LLMD's gave up on me, however, I am 100% well now and med free.

So...there is hope...never "accept the fact" that this is as good as it will be...but after 15 years it might be time to consider a different route...which is why I suggested reading the thread on mild hyperbaric...

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