Hi I have been gone for a while and wanted to check in to see what was new here.
Thought I'd tell what's up since I really felt hopeless for sooo long.
Severe neuro lyme w/cognitive and emotional stuff....almost every symptom you can name. Thought I would die...almost did..was bedridden for about a year and rarely left house for another year.
Been on treatment for about a year and 5 months. Not consistent for 2 months.
relapsed when trying to do a gazillion things but that was to be expected. relapse not as severe and short lived.
I am on Ketek now with Mepron and bicillin IM shots. So far I am doing fantastic!!!
We moved across the country so now we live in New England at the epicenter but its bad everywhere... Its so amazing that when it gets out that I have been battling that (I don't ever volunteer it anymore due to the ignorance out there. It's something people have a hard time with especially the antibiotics...they have their stories about taking medications that they have not questioned) most people here know someone who has it and/or believe that it is real and as bad as it is.
Anyway, to give some of you hope in the darkness...there is hope and healing. I have learned to go inside more for answers and trust myself and give myself what I need. This has made me stronger in ways I never thought I'd be.
The Ketek is a little concerning since the liver is important.... Another thing is that I have come to better accept this thing if that is at all possible. I still get pissed off about it but am learning to let it be what it is and not fight it so much...that helps but took a long time to get there...its like a grieving process.
I'm not back to 100% yet but the better days are really piling up and I'm doing things and planning things I never thought possible...
hang in there
Posted by geniveve (Member # 8646) on :
you're post came at a very low point for me. thanks for posting it. i told my sister and she asked how long i had to live.........what a bummer!!!!
i got git in june of 05 but he thinks i've had it much longer, who knows how long.
hopefully will start treatment at my next appt on febraury 1.
Posted by tothepoorhouse (Member # 8595) on :
Thanks for posting this success story!! We need more of them.
Question? Are you saying that what you are on right now helped you..Ketek now with Mepron and bicillin IM shots...or is this the last leg of your battle?
Posted by pippy (Member # 6005) on :
Are you saying that what you are on right now helped you..Ketek now with Mepron and bicillin IM shots...or is this the last leg of your battle?
Hi you're welcome! I know all too well the despair.. This seems to be the magic combo for now...doc will switch as needed but it seems to be working on the last symptoms well.
I was on doxy high dose for about 6 months and herxed like crazy. then dx with babesia...tx lagged then because I was so confused and not wanting to do the tx for babesia because I feared it made me go nuts mentally. It did at the beginning...I was a wreck from the emotional and physical herx of the babesia...also found it hard to belive that I could have another infection on top of lyme.
So, after much resistance used Mepron and artemisinin. went off too early had to start back. The most miraculous drug for me was the bicillin shots which I only started last August.
The next biggest thing to help has been ketek.. I was on zith, then got stomach stuff so switched to biaxin..then doctor wanted to go all out and had me do the ketek since it was helping so many people get better. Ketek got me out of the relapse very quickly and has been helping ever since... Need to get liver panel done...have been non-compliant in last few months but now I see why its necessary...don't want liver problems!!!
Also massage therapy is great if I could afford it every week as is high dose magnesium, vitamin C and all those other holistic stuff to clean liver, meinerals and detoxx. Mentally, antidepressants and doing work on my beliefs about myself that attached to this disease have been really helpful in dealing with it... A lot of hurt has happened over my own and other people's misunderstanding and telling stories about it that are not supportive (as we all have experienced) I am learning to forgive the doctors and people who I felt caused harm not intentionallly but through ignorance. i was very very angry and in a mental torture chamber of my own making around these things. This disease brings up every concept and challenges even the strongest of people to remain sane... Hopefully someday there will be understanding in the community at large as there seems to be for HIV and Cancer...until then we all need a safe place to fall...
Posted by groovy2 (Member # 6304) on :
Mepron Rocks I wish I had a 5 gallon bucket of it--
Yep I felt better in days too-- Got better every day--
One thing about mepron is you can not miss ANY doses-- Important
If you do the babs can come back quickly-days-
I ran out twice - the first time was after taking 3 bottles of mepon-- Babs came back in 4 days--
Dont mess up like I did--
I think if you can take it for 6 months or so with out missing any its a smooth ride-
I doing perty good now also--
Mepron Rocks ---Jay---
Posted by riversinger (Member # 4851) on :
Pippy, how wonderful to hear such a good report from you! I've been wondering how you are doing. I'll have to let the people on our group know you are doing so much better.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by pippy: Another thing is that I have come to better accept this thing if that is at all possible. I still get pissed off about it but am learning to let it be what it is and not fight it so much...that helps but took a long time to get there...its like a grieving process.
NEWBIES!!! Check out what she just said!!! You're right on and it's SOOOO important to "get that!"
Pippy! I'm so glad you are doing so well! Yippeee!!! Thanks for stopping in to tell us this!!