phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Been away for awhile, wanted to try different treatments, rest hoping chronic lyme would go into remission for awhile. I did have one good month and wham back again.
My esoph. is so bad I can no longer take anything except a vit/min supplement.. and meds for esoph.
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 seen new doctors, one wanted me to go on 2 yr IVs no way can I afford she said that was the only answer.. I tend to agree as nothing has worked but seems due to esoph problems I can't take orals abx or herbs..
I want to get functional but don't think its going to happen.
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
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.....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote: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.....
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
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.
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
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.. "
posted
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.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
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..
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
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...
Posts: 1887 | From Earth | Registered: Jul 2013
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote: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...
Phoiph, so what turned it around for you (if you see this)?? Was it the mild hyperbaric? I guess I should go to that thread and see.
PS I went to the thread. OMG, I only read 1-1/2 pgs, but this is amazing. I have more questions later. Thank you!!!
[ 07-26-2014, 11:54 PM: Message edited by: Rumigirl ]
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic