Just really curious to hear from more people, since it's hard to compile all of this by searching:
What made you decide to try IV meds (specific symptoms, failure of orals, cardiac/neuro involvement, etc.)?
How long did you do it?
How long were you sick before starting IVs?
Port or Picc or Hickman or?
In percentages, how much of a gain would you say you made on IV meds? (i.e. went from 30 percent functioning to 70 percent)
Did you retain the improvements?
Which infections do you have (that you know of)?
Which meds did you do by IV?
Posted by droid1226 (Member # 34930) on :
Just because it's late, I'll just answer these in the order you asked.
Oral failure after 1.5 yrs
17 months
PICC
20 up to 50% then plateued
yes
I'm sero positive for ehrichiosis, lyme, bart, and a clinical diagnosis for babesia
Mostly IV Cef, but IV levaquin was the best, I also did clinda and bactrim. But the whole time I was on Cef.
Posted by LymeCFIDSMCS (Member # 13573) on :
Thanks Droid that's really helpful. It actually helps my brain a huge amount to have everything in order like that.
Do you think bart was your worst *neurological* infection given that Levaquin was so helpful?
Posted by Maia_Azure (Member # 44330) on :
What made you decide to try IV meds (specific symptoms, failure of orals, cardiac/neuro involvement, etc.)?
Neurological Symptoms severe, no improvement orally
How long did you do it?
10 weeks
How long were you sick before starting IVs?
9 years
Port or Picc or Hickman or?
PICC
In percentages, how much of a gain would you say you made on IV meds?
50%
Did you retain the improvements?
so far
Which infections do you have (that you know of)?
Lyme, babesia, possibly Bart.
Which meds did you do by IV?
Rocephin, Zithromax, Flagyl
Posted by LymeCFIDSMCS (Member # 13573) on :
Wow, thanks Maia that's a really encouraging improvement after 9 years of being sick.
Posted by joshzz (Member # 23526) on :
I was literally dying as a result of lyme. My autonomic nervous system was shutting down - I was told by a neurologist at Jefferson Hospital in Philadelphia that I was suffering from Shy-Drager Syndrome, a serious condition.
IV antibiotics over a long period of time turned me around. Not 100% yet but thankful, far better than being near the the door of death.
Posted by droid1226 (Member # 34930) on :
Yes, the levaquin was vital in clearing my head and standing after I hadn't for several months. It was almost like cleaning out my CNS. But that was the only antibiotic I can say without a doubt had a major impact.
Posted by Phoiph (Member # 41238) on :
What made you decide to try IV meds (specific symptoms, failure of orals, cardiac/neuro involvement, etc.)?
Severe Neuro-Lyme, encephalitis
How long did you do it?
9 months
How long were you sick before starting IVs?
Undiagnosed 1-1/2 years
Port or Picc or Hickman or?
Picc
In percentages, how much of a gain would you say you made on IV meds? (i.e. went from 30 percent functioning to 70 percent)
Progressive spiral of decline while taking antibiotics which continued after stopping
Did you retain the improvements?
Never improved; became homebound for 5 years with worsening symptoms and increasing disability
Which infections do you have (that you know of)?
I am well now (via mild hyperbaric)...but had Neuro-Lyme, Babesia, Bartonella, Mycoplasma, HHV6, EBV, etc.
Which meds did you do by IV?
Rocephin, Zithromax, Heparin, Magnesium Posted by LymeCFIDSMCS (Member # 13573) on :
Phoiph, I"m curious if you started the mild HBOT *while* the PICC was in or after? Curious if you think HBOT with meds would have been better than HBOT/meds alone, or if you did anything else to supplement the HBOT (i.e. took herbs at same time)? Also, did you have any issues w/ babesia and HBOT? (since some people say HBOT can make babs worse while making others better. . .).
Posted by Phoiph (Member # 41238) on :
LymeCFIDSMCS...
Nine months of IV antibiotics further destroyed my system, causing me to become more toxic, with multiple chemical sensitivities, severe neurological issues, etc., and at that point I pulled my picc line, and became homebound for over 5 years, unable to follow through with any further meds, supplements or therapies (except for homeopathy), and was down to a diet of 5 foods.
So...after no treatment (besides homeopathy) for 5 years, at my most ill, I started mHBOT with supplemental oxygen (with a home chamber). I could do no other therapies simultaneously, and in retrospect, I realize that was to my advantage.
I had severe Babesia and Bartonella when I began mHBOT; it was the only thing that worked for me.
quote:Originally posted by LymeCFIDSMCS: Wow, thanks Maia that's a really encouraging improvement after 9 years of being sick.
I knocked myself into remission in 2004 or so using herbals and a naturalpath. I had been diagnosed as CFS a so I was pursuing a viral theory of disease.
Stress brought it out again, to the point where I couldn't work. I am hoping to go back to work soon.
What's leftover for me is nerve pain and some cognitive dysfunction. And unrelenting depression. Hopefully I don't relapse.
My treatment has been fairly aggressive so far. I am only on ceftin and herbals now. I'm scared of a relapse. But I am better than before treatment.