I have been on iv's straight for 14 months now. They have done next to nothing for me. In fact I am in more pain now then when I started treatment 18 months ago.
Does anyone feel like iv's have done nothing for them and did you feel any better after having picc line out and iv's stopped?
This is just not getting better for me, I'm hoping maybe my body needs to detox a little? I just need a little hope right now.
Posted by jessicabooklover (Member # 39427) on :
IV did not help me. I do not feel better since stopping, but IV Rocephin did nothing to help me. . Feel better. Jess
Posted by Lymetoo (Member # 743) on :
I would detox and make sure you have a handle on any yeast leftover from all the abx.
Posted by Pony (Member # 32559) on :
Did you try a bunch of different IV meds or did you just stay on one protocol for 14 months?
Going forward I would humbly suggest trying different protocols/medications to see what elicits a response as opposed to sticking with one thing for 14 months straight.
That way it would be easier on your body, and you could use different medications diagnostically. For example, if you herx/flare on rifampin, you could be dealing with bartonella. If you herx on mepron, maybe you have babesia as well...
Who is your doctor?
I know Bartonella is thought to be more prevalent up there than lyme. I have also spoken to a doctor in that area that believes nearly all of his patients in the wyoming valley area are co-infected with babesia, and most respond and improve with mepron.
So those could be a couple things to consider if you have not already done so.
Send me a pm or give us all some more info.
We can all try to piece this together Posted by shannon12 (Member # 36149) on :
Thanks for the responses. Some more info.
I did iv rocephin for 8 months, iv clindamycin for 1 month, iv doxy for 2 , and vanco going on months 2.
The first 8 months of rocephin were with another doc in philli area. I've been seeing Dr. H in NY for a few months.
I have babesia and bartonella also, been on Mepron for about six months.
I have been on so many different orals. Right now I'm on mepron, plaquenel, biaxin, nystatin.
Doctor had mentioned some people improve after stopping the iv's so wanted to know if anyone noticed this.
It just doesn't seem right that I'm in all this pain, I have herxed throughout this but don't seem to get any better. Right now I don't think I'm herxing it's just constant severe pain and fatigue.
I feel like I'm losing my mind, 18 months of treatment and now worse? I have been sick for at least 9 years, but all this medicine and no response, it gets harder and harder to go on everyday.
I have been on a few meds where I can say remember the herx, but again I never get any better, unless I'm just not noticing it.
I feel like death, I am so sore I look in the mirror and expect to see my body covered in bruises. I am hoping for at least some sign of some recovery, I honestly don't care if I live or die at this point. It's just not realistic to go on like this. Sorry, I just don't know what to do.
Posted by Life+Lyme (Member # 33568) on :
IV Rocephin did absolutely nothing for me... if anything it made me have more problems.
IV Vanco was a good drug for me; I just felt better on it once I got over the red-man syndrome. I felt bad on IV Zith and felt better once I got off. IV clinda was a good drug for my brain fog, but it made my stomach mess up.
Are you doing an intracellular, cystic, and cell-wall drug all together? It's possible that you are only addressing one form and the others are going rampant.
Have you considered Bicillin shots? They are really, really helping me.
Sorry you aren't noticing improvement. I know that is a discouraging situation. Hugs!!
Posted by Pony (Member # 32559) on :
How about rifampin or levaquin?
Any response to either?
Posted by sammy (Member # 13952) on :
It does sounds like you need to stop the antibiotics for a little while and detox. This would allow you to see what symptoms are still remaining from the infections and give your doctor clear guidance as to what to treat next.
Right now it sounds like your treatment is not working. Something needs to change.
Posted by lax mom (Member # 38743) on :
I agree with the others. Work on detox and yeast.
Let Dr H know your concerns. He has more tools in his toolbox than solely IV abx.
Posted by nonna05 (Member # 33557) on :
what is red- man syndrome ?
Posted by Life+Lyme (Member # 33568) on :
Nonna, it's a strange phenomenon specific to IV Vancomycin where your body releases crazy amounts of histamine and you turn stop-sign red from your chest up. It's horrible.
Posted by shannon12 (Member # 36149) on :
thanks everyone. I talked with doctor today and they also said it will be good to let my body detox, I had to stop them anyway because I can barely flush my picc line as of 1 week ago. I guess it's good it held up for 14 months. So that will be out as of wednesday.
Pony-I did oral levaquin for about 1 month, never took rifampin.
Lifelyme-I also got red man's the first dose. I havn't done bicillin shots yet. I'm sure that's something they may try.
Posted by beths (Member # 18864) on :
I was going downhill-till I found out I had the bad detox gene-started on modified citrus pectin and phytosterols, then added charcoal-felt much better after 2 months! (I am on IV)
Posted by Pony (Member # 32559) on :
I would give rifampin a shot as well as the bicillin injections after you take a break.
Maybe try some Byron White formulas or the Zhang protocol in the meantime to rebuild your immune system/detox??
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. Feel better. Jess
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