Been on oral antibiotics 13 months following positive WB and positive Babs Duncani, low CD57......
but have been ill longer than that, anyway been struggling with brain fog, fatigue, ankle and foot pain, balance etc etc......
also on a bunch of other meds to stabilize symptoms....
My LLMD recommends IV for 6 months at this point as been on orals over a year with little improvement.....
Due to start in 2 weeks but am nervous and wondering if its the right thing.......I need to get better for my family and quality of life but i just have this nagging concern........I hate to put my family in the finacial position but at this point how much more can I do.......
I feel my LLMD has got me stabilized but not improving as I said i still do not have quality nor do my family.....i still have multiple symptoms that prevent me from moving forward......
I guess I am nervous incase it makes things worse or i do not improve also I am fully aware of the risks.......
Think i am just looking for some words of encouragement before I embark on the next stage of this journey.........
Posted by Abxnomore (Member # 18936) on :
While there are, of course, never any guarantees it has always been my opinion that IV therapy brings the most improvement. It did for me. If goes right up to your brain, so there are no issues with passing the BBB. Based on what you wrote, it looks like it's your next best option. Hopefully, it will help clear up some of your lingering symptoms.
I hope your LLMD will keep you on complimentary orals and cyst busters along with the IV to get the best benefit from it and any appropriate meds for co-infections if you have them.
Posted by Florence1 (Member # 22960) on :
Thanks he uses multiple antibiotics to cover all the bases over the 6 months......
think I am more worried that we are opening a hornets nest once we start and things will get worse before better..........but I know thats the idea...........
Just nervous about that and my kids seeing that.......
Posted by dmc (Member # 5102) on :
I did IV Tigecyl for 4 months...been off all lyme treatment for almost 2yrs since.
Prior - dx w/MS for 17yrs before finding a llmd & positive lyme WB. Did oral combos for 6yrs w/some but not sustained improvements.
I.V. was the ticket for me.
Good luck, and think of it as another adventure in your treatment.
May your IV give you a healthier 2011.
Posted by Florence1 (Member # 22960) on :
thanks dmc.......
Posted by timaca (Member # 6911) on :
Hmmm.....well, I'd take a hard look at what exactly you are sick with. For example, you list some viruses, EBV and HHV-6. If those are really high, then all the antibiotics in the world (even IV) aren't going to help those pathogens.
I was on IV rocephin for 6 1/2 months. Yes it helped me a lot. But taking antivirals has also helped a lot.
So, identify what is most likely causing your problems based on test results and treat that first with the least risky treatment available.
Best, Timaca
Posted by Abxnomore (Member # 18936) on :
It's my experience that when you start knocking down the spirochetal load aggressively, for example with IV, the viral loads come down too and are often less of a problem and often times go into remission.