Well, 'had a phone consult today with my lyme doc. He is changing up my protocol (I have been on the same combo of IM bicillin, oral levaquin, malarone, bactrim, plaquenil and nystatin since January).
While I have had a little improvement, my brain function is still the same (and even declining somewhat) and other "new" symptoms are now appearing. So...he has decided that I have probably plateaued on this current protocol and it is time for the picc line again (he suggested it about 4 months ago, but I wanted to delay it until after the summer) and will start that the end of this month.
I will now be on IV vancomycin and IV glutathione along with oral zithromax, biaxin, mepron, plaquenil and nystatin. While I abhor the picc line, I understand it's necessity, but am a bit concerned that there is no guarantee and that I now don't have any treatment in the mix for bartonella which, quite frankly, I think is a lot of my problem since I am 95% neuro.
Any thoughts on any of this would be appreciated!
I am just SO sick and tired of this very long ride! I just wanna get off!
~tri
Posted by triathletelymie (Member # 26456) on :
Up...anyone?
Posted by dbpei (Member # 33574) on :
I have neuro lyme too and I noticed that when I started treatment for babesiosis, I started to feel better. I was treated with bart/lyme meds for the first 7 or 8 months with little, if any, improvement.
I am now on mepron, omnicef and biaxin. I definitely feel stuff going on in my head and ears. Tinnitus is starting to get a little better but my hearing loss - no change. Feelings of vibrations in head and extremities seem to be getting a bit better.
Every day is different. How did you do with your first Picc line? How long were you on? My LLNP wants me to start with Picc line and I am putting off a bit longer while gathering more info.
Be careful with the vancomycin. It has been known to cause some irreversible hearing loss - esp. when taken in high doses.
Posted by sixgoofykids (Member # 11141) on :
Have you ever treated parasites? My brain function improved when I treated parasites.
How's your bart doing? Doesn't look like you're hitting bart with your new protocol, but maybe babs is worse for you?
Posted by nonna05 (Member # 33557) on :
aren't zith and biaxin in same family,,how's your Q-t on EKG so levaquin was for bart? can you take A-bart drops?
honestly can't usually tell which infection is acting up more than the other,,just seems to be same symptom's migrating.
can usually tell if full moon is around ,,it all goes crazy then
triath,,it seems as though fatigue and weakness/pain are not currant issues...Is that right?
Posted by triathletelymie (Member # 26456) on :
dbpei - I had my first picc line for 7 months, but only infused meds for about 5 of them. My LLMD at the time(I have since switched) was a little nervous about having it "long term". During the time that I had the picc line I started with rocephin and then ended up with IV doxy. I had that along with multiple orals.
Six - No. I never treated for parasites. I brought that up to my LLMD at yesterday's phone consult...they said that they are going to sned me a kit to test for them...??
And, my thoughts exactly on the bart treatment...since they are having me stop the fluoroquinolones, I am concerned about no longer being on bart treatment either...
nonna - Yes, levaquin was for bart. I will ask about the A-bart drops.
Anyone else?
Posted by sixgoofykids (Member # 11141) on :
My LLMD gave me a test kit, too. It came out negative, but positive for some bacterial overgrowth. He put me on Cipro for the bacterial overgrowth.
As soon as I stopped Cipro, the symptoms came back, so the nurse practitioner had me take several different herbs that I found on the internet. It was easier to use Humaworm because it is an herbal combination rather than buying all the different herbs she suggested that were all from different sources.
Once I started the Humaworm, I passed a very large tapeworm. On Enula I passed many, large roundworms.
I wouldn't trust testing.
Humaworm supposedly also treats bartonella. I've heard others say that the company claims it treats bart.
Posted by triathletelymie (Member # 26456) on :
Anyone else?
Posted by seibertneurolyme (Member # 6416) on :
The obvious thing missing is a cyst buster. Also I would think doing the zith IV rather than oral would be much more effective.
In the past people thought that IV vanco worked on bart -- hubby has no personal experience with that med except for a couple of doses during various hospitalizations -- not sure if vanco is still considered a bart med or not.
Personally if I was treating babs and had a PICC line I would give IV clindamycin and oral qualaquin (quinine) a shot. That combo was one of the best hubby has been on for babs. Was also taking malarone with those meds.
Bea Seibert
Posted by BoxerMom (Member # 25251) on :
Hi tri -
I think you mean Bactrim, not Biaxin. Zith and Biaxin would be redundant. And I know this doc likes Bactrim. (Tho he also likes Biaxin.)
This is a good program. Zith and Bactrim hit Bart.
I love the Vanco, Zith, Mepron, Plaq combo. I really think Babs Duncani is your problem pathogen. It is an aggressive little bug. Heads straight for the brain and clogs up the capillaries. Brain becomes hypoxic and massively inflamed.
You must open your circulation. What enzymes or herbs are you taking to break up CICs and biofilm?
Do not despair! I think you will make progress on this program.
We persevere. That's all we can do.
PM me if you want to talk.
BoxerMom
Posted by CD57 (Member # 11749) on :
Boxermom interesting about babs possibly being culprit for neuro sx instead of bart....bart is always nailed as the culprit for this esp with mood disturbance and depersonalization (my worst symptom, can this be babs?). I wonder if you are right? How was the Vanco for you?
Tri-- I thought Vanco was a Lyme med. Did you ask LLMD what he is after here? I also thought it did not cross BBB? In theory it is for gram positive bacteria, neither BB or bart are gram positive. Also, I think you mean Bactrim not Biaxin? Sounds like a good combo to me. A lot of meds. Will you take all of them every day at full dose?
Posted by CD57 (Member # 11749) on :
Also consider dropping the nystatin, which only stays in the gut, for diflucan. Then you would get a bit of a cyst buster effect as well as the yeast.
Posted by triathletelymie (Member # 26456) on :
BoxerMom and CD57 - Yes, it is definitely biaxin, not bactrim. I am still on the IM bicillin, oral levaquin, malarone, bactrim, plaquenil and nystatin combo right now, though, while we are working on getting the PICC line set up for the end of this month. Then I will change the protcol to the IV vancomycin and IV glutathione along with oral zithromax, biaxin, mepron, plaquenil and nystatin cocktail.
And, yes, I am set up to take the full dose every day!
Anyone else?
~tri
Posted by RC1 (Member # 31923) on :
I have done 2 intracellulars at once and it hits Bart really well. I did Zithro and Mino, I've never heard of doing Biaxin and Zthro...but at the time I thought Zithro and Mino was a bad idea, but it brought by Bart load way down.
I'm with the others, if you have been doing Levaquin since Jan. I would think that Bart is probably not what is causing the head stuff.
Posted by CD57 (Member # 11749) on :
what does your LLMD think is causing the brain stuff?
Posted by CD57 (Member # 11749) on :
And what are you neuro symptoms--are they cognitive, psychiatric, both?
Posted by triathletelymie (Member # 26456) on :
CD57 - He doesn't really know...'could be any of the pathogens, he thinks.
My symptoms are kinda both...but more cognitive than psych. Cognitive/neuro - prior seizures, short and long term memory loss, numbness and tingling in hands when asleep, right hand always colder than left, heart palps when sleeping/waking/falling asleep, brain shocks (or whatever the heck they are) in my wake to sleep cycle...every single night when I try to fall asleep...I see flashes of light and hear a noise, similar to a metal spoon hitting a metal pot. Most of my problems were always when I was sleeping, or drifting off to sleep...seizures, heart arrhythmias, etc.
Psych - Anxiety (I didn't even know what anxiety was, prior to all of this...I DO NOW!), depression.
Totally sucks! I haven't had much joint pain and/or fatigue...mostly all brain-related stuff for me.
~tri
Posted by RC1 (Member # 31923) on :
Have you done the HLA DR test to see if you can't detox Lyme?
I don't detox it well, I don't have the worst case scenario but not the best either. I started Cholestrymine (CSM) about 4 months ago. After about 2 months on 1/4 of the recommended dose. I was like holy crap! I have my brain back!
The other thing I can't detox is mold, we ended up doing major renovations on our house because of that. When I am exposed to mold now I feel how I felt when I had Lyme.
I can't believe I just wrote "had Lyme" I guess I'm really getting better.
Posted by kim812 (Member # 17644) on :
I am on rifampin/minocycline for bart..I also went the IV route twice with rocephin both times. Once for 6 months which brought me back to 85 percent and the second time for 4 months which did nothing...I went on the second time because I relapsed..