Since everyone is different and llmds have different theories I'd like to know what you believe got you out of the pit. I'm predominantly interested in abx for lyme only but please list other things as well.
Thank you!
Posted by blinkie (Member # 14470) on :
ceftin/zithromax-10 months IV levaquin and rifampin-3 months Ivermectin/Biltricide-2 wks and one week Chloroquin/primaquine-2 wks and three wks IV EDTA-M,W,F with all of the above with the exception of ceftin/zith.
I have done many, many combos but these by far got me out of the pit of he**.
Posted by Hoosiers51 (Member # 15759) on :
Starting Low Dose Naltrexone (www.lowdosenaltrexone.org for prescribing info...needs to come from compounding pharmacy knowledgable about how to make this) was a turning point for me.
Not that I started to get better right away on it (well, I did see progress), but that it was the beginning of me progressing instead of standing still.
I also feel Bicillin helped a lot but it was a long process....it is not a med that gives quick results, and it's a time commitment. I was on it a year.
Bactrim DS was a turning point for me in that it gave me the most profound herx I've ever had, and also the most noticable and direct improvement...to my brain/cognition. Most people don't seem to respond to it that well, but I did.
I would tell anyone who needs direction to start with Low Dose Naltrexone if you haven't tried it yet, and then to just keep trying abx until something starts "doing something" to the point that it makes you go, "wow, I'm on to something."...not just, "am I on to something?"
Posted by Hoosiers51 (Member # 15759) on :
blinkie,
I didn't know you did chloroquine/primaquine. Interesting. What symptoms did it help you with exactly? Are your babs symptoms now gone entirely?
Thanks!
Posted by sickpuppy (Member # 23846) on :
I'm really sick of the anxiety and panic. Any specific abx that put an end to that particular area of this hell?
Hoos, I'm just trying to see if there's a trend--if people mention any abx over and over. I've tried a bunch of stuff by now.
Posted by Hoosiers51 (Member # 15759) on :
I think I recall hearing "Bicillin with Biaxin" as the answer, when someone posted their LLMD's answer to that question. The question being, what is the best combo, that helps the most people, overall? Though I hope no one quotes me on that. I am going by memory.
I think you'd also see Rocephin a lot. Though for me, I only lasted 4 weeks on that and had to stop b/c I couldn't handle it, no progress seen.
Then I think it's important to use either Flagyl or Tindamax at some point.
Tindamax seems to help a good number of people. LymeMD talks about that on his blog.
When I added Plaquenil to Zithromax I was already on, that seemed to help me with Bart.
For anxiety...I think you would see things like either Levaquin or Rifampin with Zithromax. That's what people use for cognitive/Bart/BLO, at least.
These are probably things you already know, but I'm just repeating the trends that have stuck out to me. Because I have also asked myself these same questions you are asking.
Posted by blinkie (Member # 14470) on :
Oh, I forgot to list bactrim too! When I took it last summer I got 100% well. But, it didn't last. I'm back on it now to see what happens.
Hoosier-the symptoms that improved were, foot pain gone, healrt palps 90% gone, sleeping better, body temp back to relatively normal. I can now tell how to dress my son for the day without having to look at the thermostat. The body temp was by far, the biggest improvement. My stamina improved as well.
I still have unrefreshing sleep which leads to fatigue and breathing troubles in cold weather and floaters.
LLMD is certain I had a protozoal infection of unknown origin. Could be babs, could be something else. Could be gone, could still be there. It's been three weeks since I stopped and the improvement is holding steady.
Posted by Lymetoo (Member # 743) on :
Artemisinin and zith .. finally knocked out that babesia. Going gluten free several years ago also changed my life!
Posted by BackinStOlaf (Member # 23725) on :
god- I hate being a guinea pig.
Posted by sickpuppy (Member # 23846) on :
Yup. This was a particularly hellish day for me. Wish there were more effective and quicker treatments. Cruel and unusual as it is. Posted by bcb1200 (Member # 25745) on :
Ditto on the LDN. (Low Dose Naltexeone). Ifeel great and there are no side effects.
Doxy / Flagyl also heled a lot. I've made tremendous progress.
Posted by nspiker (Member # 22824) on :
One of the first things that helped me was fibrolytic enzymes. My leg was tight , and I could not stand for long, and it was immediately improved with the first pill.
Before I started treatment for babesia, I was treated for toxoplasmosis, a protozoa/parasite. Like blinkie, I have some variation of a protozoa. Pryimethamine and Clindamycin reduced the tightness in my leg, improved brain swelling, and improved the "flu-like" symptoms.
Also, love LDN. Think it has improved my immune system.
I'm curious Blinkie, what other protozoa-like protocols have you taken? I might mention this chloroquin/primaquine to my llmd. I just tried clindamycin/qualaquin, and it completely kicked my derriere. I must not tolerate qualaquin or quinine, because I love IV clindamycin. Is primaquin a quinine drug?
Posted by sickpuppy (Member # 23846) on :
I've asked my llmd about LDN because of all the positive things people say here. He said he hasn't seen it help anyone.
Curious.
nspiker, can you send me a link to where you buy fibrolytic enzymes?
Posted by blinkie (Member # 14470) on :
nspiker-primaquine is an anti-protazoal and mainly affects malaria parasites/ Chloroquine hits the same and amebas. No telling what I had that got me such great results but a few others have done the same.
I did try daraprim for toxoplasmosis but had no reaction to it at all.
Posted by dmc (Member # 5102) on :
hands down - Tigecyl
LDN can cause muscle stiffness so it isn't true the -no side effects.
Flagyl,mino and zith helped the most. LDN caused me constant head pressure (which I don't usually have) and terrible panic and disorientation. I lost all track of daily time. I stayed on it 2 weeks with no change. I know more people that have used it that have had no help. 1 it helped for awhile then stopped working.
Posted by Consuelachacha (Member # 26538) on :
Wow, reading this blows my mind. Since I have only been treated with Doxy 100mg 2x day-4 weeks. It appears I have a lot of hell to go through IF AND WHEN I can find a Dr. to help me.
Good luck to you all.
It sounds like a lot of you are well on your way to recovery. I have only just begun.
Cleo-I have panic, disorientation, lose track of time, etc. LDN is going to be something I might stay away from IF EVER OFFERED!!
Posted by Consuelachacha (Member # 26538) on :
Wow, reading this blows my mind. Since I have only been treated with Doxy 100mg 2x day-4 weeks. It appears I have a lot of hell to go through IF AND WHEN I can find a Dr. to help me.
Good luck to you all.
It sounds like a lot of you are well on your way to recovery. I have only just begun.
Cleo-I have panic, disorientation, lose track of time, etc. LDN is going to be something I might stay away from IF EVER OFFERED!!
Posted by sickpuppy (Member # 23846) on :
dmc, did you do the tigecycline IV?
Posted by canefan17 (Member # 22149) on :
Timetable = 10 months treating Current Health = 90% Current Protocol = Buhner's (no abx's)
Posted by Michelle M (Member # 7200) on :
Doxycycline Amoxicillin + Probenecid Flagyl +Mepron/Zith/Artemisinin for babesia WA-1 ...for a little under 2 years.
Throughout: Theralac for a daily probiotic. Magical stuff.
Posted by Robin123 (Member # 9197) on :
Only oral clindamycin has worked for me. I got Lyme in the early 80s, presenting as a slow fibromyalgia development.
The clinda stops fibro pain and greatly reduces joint swelling.
I started with 150mg every 6 hours, then herxed after a month and dropped to 150mg 2x/day.
I've had no problems with C diff in the four years I've taken it. I also take probiotics.
Posted by heiwalove (Member # 6467) on :
what is usually combined with bactrim, and for which infection(s)?
thanks in advance.
Posted by j_liz (Member # 20496) on :
Bicillin LA and Plaquenil.
June marked 2 yrs. for this treatment, but we have been spreading the shots out. For a long time we stayed at 2 wks. apart. 3 wks. I started getting old symptoms, after mos. of this went back to 2 wks., but not for long. Currently, I am at 4 wks. apart (it's only been 1.5 mos for this) and rifing in between.
I believe sups have been a great help, too.
liz
Posted by dmc (Member # 5102) on :
Yes Sick puppy, I did 4 months FULL DOSE of the Tigecyl.
I did not do any anti-nausea meds w/it...I just "took off my skirt.... bucked up and did it".
It was tough the first month, ate alot of crackers & gingerale but by the 3rd month I was eating while infusion.
Would have done it longer but got a blood clot in the PICC arm along side the line. I did too much with it, I was feeling really good & ruined it.
I had done 5 yrs of various orals protocals with a little improvement that never lasted. Former ILADS pres. was my llmd.
Did try Rocephen in early 2004 but that didn't do anything & I got gallstones from that...they dissolved on their own since from the Rocephen.
I have/had the MS manifastaion of the Lyme,Bart & Babs.
Tigecyl supposedly kills all forms of the lyme & co-infections.
Been off all abxs since 4/09 but do take 2.0mg LDN.
I am still rebuilding and dealing with back problems. I was just evaluated for upper cervical atlas/axis chiropractic. My bones are very out of whack & torqued.
I was clumsy & did reckless things in my youth.
f13 from lymenet here told me to look into this treatment.
Are you talking about the panicy feeling where you are anxious for no apparent reason and feel you are going crazy and your bp goes up???
I have not had one episode (of that) since beginning treatment just recently, I'm a newbie!!
I took doxy for 2 weeks and then went to Omnifef, pulsing weekly with Zithro and Tindamax.
Don't know if this helps!
Also, I wanted to mention that my child is taking LDN 3mg since March for Crohn's/Ulcerative Colitis and it has been amazing overall. No side effects for her as we worked from 1.5mg and up slowly. Some people need to begin with a lower dose to prevent any side effects. Some people may have weird dreams for the first two weeks, but these go away usually.
I have read that LDN helps to boost the CD-57 and I will be asking my LLMD if I can start also as mine is only 18.
-LAXlover
Posted by nefferdun (Member # 20157) on :
Doxy was very effective but Ketek knocked the lyme down and it has never completely gotten me down again. I think Ketek is a very powerful drug and would take it again. I only quit because of headaches which were probably bart related.
It was the bartonella that was hard to kick. Levaquin was very quick and effective but left me with tendonitis and floxed so I couldn't use drugs. I wish I had been better prepared with magnesium and amino acid support.
Now I am using Bactrim DS and zithro (or roxithromycin) and tindamax (2 times a week). I feel really good - but who knows if I can actually become well.
Posted by sickpuppy (Member # 23846) on :
What a range!
LAXlover, panic and anxiety for no reason and then at also high levels/exagerated anxiety for ordinary things. Feels like I'm being lead to the guillotine for something as simple as riding a train. It's just on or off--I can never be just a little nervous like you'd get doing a speech. Any time I have anything to do, I can't sleep the night before. Stuff like that.
Posted by sickpuppy (Member # 23846) on :
more?
Posted by springshowers (Member # 19863) on :
Full Intensive Integrative Approach with Doctors and Team using IV Natural Treatments along with IV Abx in an planned out and timed method. Along with intensive Detox modalities and Diet considerations etc. Including many supplements and Immune supportive therapies too.
It was about doing it All at once and doing nothing But that all day every day in that planned out integrative intensive way.. together.!!
Got me over the Hump and on my way coasting down the hill..
Posted by steven (Member # 13101) on :
This is so interesting to read!
In my case rocephin once was a wonderdrug. It gave me 1-2 yrs without pain.
But since I relapsed and cant take rocephin again because of gall bladder symptoms I have not found an effective therapy again.
Orals do not seem to help me much.
Still searching for a new wonderdrug.
Posted by 4Seasons (Member # 14601) on :
My daughter just got sicker and sicker on abx until her LLND spent about a year addressing detox issues - binding (chlorestyramine, chlorella), keeping detox pathways open (Burbur, K-drain, Pekana detox) and other things.
Then we went back and did three weeks of IV Invanz and she got 75% better!
I really don't think any one treatment will work for everyone, but detox is soooo important.
Posted by j57401 (Member # 26395) on :
I've been under classical homeopathic care for the last year. The doc takes all symptoms into consideration and treats the whole person.
I'm positive I've been infected for at least 8 years.
2 years ago i started getting electral dermal screenings, this shows things like bacteria, viruses, etc w/o blood testing.
In December 2009, B.B. showed up, I thought the machine was wrong so I ignored it.
Last month I went to a "psychic" (really...she must be pretty good) because she said I had Lyme right off the bat.
I got a test done, and this week the results came back Igenex IGM/IGG and CDC positive.
I have been herxing on these homeopathic remedies. I use the Lymphstar Pro to help keep the lymph system draining and open. My mental front has been almost a 180 since past years, now we are working on the physical symptoms.
Homeopathy must be done by a classical homeopath in my opinion, and it takes a long time to get there, but i do believe there are benefits.
Might work for some of you! Like anything else...the doc you go to makes all the difference in the world.
Posted by erikjh1972 (Member # 20964) on :
doxy 200mg a day...3 months not much improvment(now i know not enough mg--was self-treating though)
tetra 1500mg a day...8 months, significant improvement.
biaxin/plaquenil 1000mg, 400mg a day, making even more improvment. past month and a half.
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