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Posted 11/9/2017 12:33 AM (GMT 0)
Just wanted to ask for prayer tonight. I have actually finally started seeing some great improvements the past few weeks on my current antibiotics after a couple years of treatment which is awesome however I got some bad news today about a friend and it’s just been very upsetting and I’m just hoping the stress doesn’t cause any flare ups. I can’t be specific about the situation but I’m basically losing someone-it’s a legal issue- who was a friend and I enjoyed spending time with.
This illness has just been so lonely and I had a good friendship connection with this person but I also feel like in some ways its for the best. It’s just hard bc I feel like it’s always something happening and I can’t catch a break. And it’s so hard to find people who you connect with and feel comfortable with when you have a chronic ilnesss.

I also find myself still feeling uneasy at times almost waiting for a flare or herx to happen. I am enjoying feeling better but I know how cruel this illness is and I feel like it’s almost just waiting to hit me again. I know I should just enjoy feeling well but I just can’t get the nagging thoughts away at times. I wish I felt more confident that I will heal from this. It’s been so long and I’ve had some periods of relief at times but it always comes back. I don’t know I just wonder if I will ever truly be rid of this monster. Not sure if all of this makes sense but I just wanted to try to get out some of what was in my head so that maybe I will feel some relief. Thanks for listening 😊
Posted 11/9/2017 1:14 AM (GMT 0)
Well of course what you says makes sense, all of this can wear a person down. You have my prayers with you tonight and also sending lots of hugs your way.

Stay strong, keep treating and I'm hoping more improvements come for you. Its very good that you have had better days lately.

Its normal with these infections to still feel uneasy or worried if we will ever be rid of them. Unfortunately I think many with chronic illness can feel this way.

When that happens try to focus on all the good improvements you are having. Try to do something that you enjoy. I know we get worn out but its good to still find time for things that may bring some joy into our lives.

As time goes by I also try to have faith that someday in the future researchers or one of our members will find a cure.

I'm sorry about the loss of your friendship at this time and I hope in time there are more friends or connections you can make with others that may be of help to you.

Take care and I wish you the best of healing, Jo
Posted 11/9/2017 2:08 AM (GMT 0)
sarah what were you treating with the past few years and what is new that you think is contributing to you feeling better? sometimes it just takes the right drug to knock back whatever is ailing you. sounds like a magic bullet but i've heard this happen to several folks so maybe that's it but yes totally understand i've been 'devastated' so many times from feeling better only to feel like i never made an ounce of progress i can't even count anymore.
Posted 11/9/2017 2:34 AM (GMT 0)
Hi Sarahjane, I'm sorry you're having a rough night! And so sorry you're losing a friend. I know how difficult making & maintaining meaningful friendships can be with these illnesses . If you've managed to hold onto someone , I'm sure losing them is upsetting!

I also know the feeling ( of feeling) like you're not able to catch a break!

On the other hand, I'm so happy for you that you're seeing major improvements on your current protocol. I understand that constant waiting/worrying that the 'other shoe is going to drop' feeling that comes when things are going well for awhile.

While I'm still experiencing a lot of symptoms, some of the most terrifying & debilitating ones have greatly improved. I try not to let myself dwell on it, but it's always in the back of my mind - how bad things were & what if? What if?...

Like goshawk said, the things you're feeling are absolutely normal for people with these infections...

Sending you lots of good thoughts & prayers... hang in there!

Hope things keep improving with your treatments!
Posted 11/9/2017 3:00 AM (GMT 0)
Hi Sarahjane -

Great responses already. It was smart of you to post and seek some reassurance and support. You should continue to do that along with meditation - look up breathing exercises on youtube. And pamper yourself, take time to do comforting things for yourself - don't focus entirely on treatment all day long.

The healing process from this mess is cyclical and you'll soon be on an upswing and the day won't feel so difficult to get through.

Hang in there ---

-p
Posted 11/10/2017 12:19 AM (GMT 0)
Thank you all so much for your kind words and encouragement. It’s still was a rough day but so far I seem to be physically doing ok just very emotional still but I know it will get easier as time passes and hearing the comments on here really helped. I still miss him but I know it was for the best and I’m just trying to keep taking it one day at a time.

Rikky1- I’ve been treating for about 2 years and I am seeing the biggest improvements on a combo of minocycline and ripahampin. I was on it several months ago and did well then my doc was to change things up and I tried the Wiegman protocol and the bartonella really took over an i had the worst anxiety of my life. But she switched me back to mino and riphampin and I herexed bad for several weeks but now I’ve been doing so much better the last several weeks. I’m also on a ton of supplements and probiotics + other meds for yeast control and tindizole to help break up cysts. It’s crazy bc I hardly have to detox at all where I use to have to detox constantly in order to function.
I think I know how bad it can get and it’s hard to believe that it won’t come back again bc it’s been such a long hard struggle to see progress. I just wish I could have that reassurance that everything is going to be ok but with what I’ve been though it’s hard to think that way.

Thank you all so much again for the responses. Praying for you all as well.
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