This is probably my last attempt with treating the disease before I just go to treating symptoms with my neuro. I've had enough cephlasporins via IV by now, and IM shots and orals don't work at all.
So if you've traveled down IV doxy road let me know, good or bad. Especially the sun sensativity thing, it's getting warm out.
Cheerio...
Zip
Posted by CaliLymer (Member # 6509) on :
Hi Zip,
Im also considering this. What dosage are you going to try?
Ill let you know if I get this next week.
CaliLymer
Posted by lou (Member # 81) on :
It did nothing more for me than oral doxy and it burned my veins, even with a central line. But I have heard of people who thought it worked well for them. As you know, there is a great variation in the drugs that people find useful.
Have you tried bactrim in combination with anything?
Posted by zipzip (Member # 6226) on :
400 mg per day in one infusion, 7 days per week.
I took Bactrim once for a non-Lyme infection. Why do you ask about Bactrim specifically?
Posted by achey (Member # 6284) on :
I just started iv doxy 100 mg 2x's per day.....
Can't tell you abt the sun stuff yet...doing my 4th infusion as I type. yesterday was a better day than I've had in a while... I suppose by the beginning of nest week I may hit that first 4 day herx...
I am finding it is going right to my brain. Last night I still had my usual night sweats and restlessness, but during my wakeful spell my mind was thinking..planning. Haven't been able to do that in a way long time.
History...started rx nov 2004 with iv zith, then clinda and oral tini....then iv zith and clinda... oral mino in there on and off
neuro pulled all abx last summer..bad idea... relapse... then plaqunel...then added mino...In late fall got rid of plaquinel( horrible drug for me!) added zith and mepron....was progressing slow in some areas, but still not back from relapse.
I'm very hopeful abt the iv doxy
Posted by lou (Member # 81) on :
I asked about bactrim because it sounded like you had given up on orals. Wanted to make sure you had looked at all of them. Some people think bactrim + something else (like minocin) make a good lyme fighting combination. Worth a try maybe. It gave me a definite neuro/bone herx, so it is doing something. And I have not had herxes with all antibiotics. Some symptoms not improving, so not a cure all.
On the other hand, maybe you will find IV doxy to be a good thing for your case.
Posted by Foggy (Member # 1584) on :
Zip, no more IVIg? You were so up on it as your panacea?
Posted by zipzip (Member # 6226) on :
quote:Originally posted by Foggy: Zip, no more IVIg? You were so up on it as your panacea?
It has improved my immune system across the board, on paper, hasn't correlated into anything tangible for me long term as far as symptoms. I'm taking a break from it for testing reasons but have to continue it.
I had a good initial reaction to the IVIG but I was also pulsing rocephin at the time so I may have been responding positively to that. Nuero wants to do a higher dose of IVIG to be more effective regarding symptomology.
Posted by zipzip (Member # 6226) on :
quote:Originally posted by achey: In late fall got rid of plaquinel( horrible drug for me!)
Worst medication I ever took. What kind of problems did it cause you? My neurologist said (just yesterday) to report my side effects to manufacturer.
Posted by achey (Member # 6284) on :
with plaquinel , I ached all over, was bloated, extremities swelled, brain swelling and siezures increased... and had constant diarreha....
And through it all neuro kept saying to stick it out...that it would take a while to releave pain and swelling, yet had no swelling before using it.
Your turn...
Posted by pq (Member # 6886) on :
if you get the iv doxy, find out what your doc will do about the increased intracranial pressure, which i think is high blood pressure in the brain. ask the doc or find out what the Sx are for this kind of head pressure.
one pediatric reference mentioned checking the baby's temples for pulsing, which is indicative of high intracranial pressure.
Posted by pq (Member # 6886) on :
fwiw, consider...
some studies on those diagnosed with als, in particular those with bulbar involvement, that received doxycycline got worse, and, i think, died. i don't recall if any of these people were diagnostic for lyme, as well.
theres a statistic of 47% of lyme-infected males and als. to get the correct wording, on this statistic, see http://www.actionlyme.org. the study,and/or the reference to this can be found on this site, and probably on pubmed, or sci.med.diseases.lyme.
check sci.med...als disc. Bd.
in addition, see the atkinson-barr study on als people, subsequently diagnosed with lyme, and who got better with i.v. flagyl, followed by some other abx.