I had to get a new neuro LLMD, as my previous one moved. In the first visit, he thought that I had treated Lyme enough and I had Post-Lyme Autoimmune syndrome----yikes!! I knew that he tended to go to autoimmune too quickly, but didn't expect it that quickly! I am hoping that he will come around in a subsequent visit, as he does put people on IV for a year or so.
I didn't fight it too hard at the time, because I was having such severe gallbladder/liver/pancreas/back pain and symptoms from IV abx (rocephin originally, and then doxy), that I knew I had to solve that problem first anyhow.
Which I'm still dealing with. No one has answers to that one. It seems that it's on me to solve that, as the GI drs have come up with nothing, except that I had gallbladder sludging, which I got rid of (according to the ultrasound).
But when I restarted IV abx, the symptoms came right back.
He put me on __mg Amoxicillin twice a day, just because it's summer, and I could easily get another exposure to Lyme (although so far, I've hardly been out of the city!).
In Dr. B's guidelines, he doesn't say what the dosage is for Amoxicillin. So what is a normal dosage, and what is considered a high dosage? I don't know if there is any point to my taking the Amoxicillin at this dosage. Or if it's too low, it just may create resistance.
I'm still wrestling with the GB/liver/pancreas issues. They are better when off treatment, but not at all gone. And in the meantime, I've slid seriously downhill with severe neuro symptoms. Not that I was very good before anyway. Sigh.
I can't even get a follow-up appointment with the neuro, as he is so busy they can't even fit me in, and that's been for 5 1/2 weeks now!! But I don't even know what treatment I can handle now anyway, unless I go back to rifing and herbs, etc. Or stick with orals until I get the organ problems handled---assuming I can even handle those.
**dosage edited.. Please PM for info**
[ 08-06-2011, 09:17 PM: Message edited by: Lymetoo ]
Posted by sixgoofykids (Member # 11141) on :
I took ___ mg three times a day.
If he's saying the infection is gone and now it's post-Lyme, I'd find someone else or ask for a very good explanation of WHY he thinks that.
[ 08-06-2011, 09:19 PM: Message edited by: Lymetoo ]
Posted by jklynd (Member # 7550) on :
Rumigirl,
Do a Google search on "Art Doherty+Lyme+amoxicillin"... Seems like he was up to about 6 grams(oral)per day at one point.
Since recovering,it seems like he doesn't frequent the Lyme newsgroups of any kind anymore.
With some of the latest findings on Lyme and "cystic" forms :Google "Eva Sapi+Lyme+Tindamax":
Things may have changed in the infectious disease specialty,just as all the "experts" recently have mentioned that tests for TB,somehow,used for decades,are no longer valid.....
"WHO cautions in their release that "patients can have different antibody responses suggesting that they have active TB even when they do not." Antibodies may develop against other organisms that share the same antigens, inaccurately indicating active TB."
Reminds me of the song "Who do you Love?" Maybe it should be "Who do you Trust?"
Sound like Lyme?
Note: If above link requires MedScape subscription,and can't be viewed,I'll see if I can post a link to some "open" internet sources.....
[ 08-06-2011, 06:24 PM: Message edited by: jklynd ]
Posted by TF (Member # 14183) on :
I took ___ mg three times per day with probinecid each time.
Burrascano gives the amoxi dosage on page 18. Here it is:
"*Amoxicillin- Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are often needed."
So, that says 1 gram (1,000 mg) every 8 hours plus 500 mg probenecid every 8 hours. Doses up to 6 grams often needed.
I was taking 4.5 grams per day.
SGK was taking 7.5 grams per day.
[ 08-06-2011, 09:19 PM: Message edited by: Lymetoo ]
Posted by Rumigirl (Member # 15091) on :
Sigh. That's what I was afraid of.
The only reason I went to this dr was because I have been on IVIG, for a neuro dx (peripheral neuropathy) and need a LL neuro to rx that. There isn't anyone else around to go to for that. This dr does rx that and is LL, although, obviously not LL enough. And my other LLMD requires that I have a neuro on board. My previous LL neuro was better about this.
This dr is brilliant in many ways, but . . . this is alarming to say the least. If I can ever get a second visit, I will fight it. I had a second visit scheduled, but the appt time got messed up, and now I can't get another one scheduled at all for 5 1/2 weeks and counting!
But then the other issue now is what can I tolerate now?? That's not clear. IV had helped me, and I believe I need it. But I've had such severe organ problems this year due to it.
So at the dosage he rx'd and with nothing else with it, I'm sure it just creates resistance---which is what I was afraid of. Oh, great! I'm better off without it, I'm sure, due to that.
I don't know how I missed Dr. B's dosage. Thank you.
Posted by TF (Member # 14183) on :
And, without probinecid, the half-life of amoxi is 1 to 1 1/2 hours. So, it is gone out of your system in no time. I would say that it is useless without the probinecid.
Here is a quote from Burrascano that says it is important to have sustained high levels of amoxi for at least 72 hours:
"With cell wall agents such as the penicillins, kill kinetics indicate that sustained bactericidal levels are needed for 72 hours to be effective.
Thus the goal is to try to achieve sustained blood and tissue levels. However, since blood levels are extremely variable among patients, peak and trough levels should be measured (for details, refer to the antibiotic dosage table). Because of its short half-life and need for high levels, amoxicillin is usually administered along with probenecid. An extended release formulation of amoxicillin+clavulanate (�Augmentin XR�) may also be considered if adequate trough levels are difficult to attain." (page 14)
So, that's why I think taking it alone is useless.
Posted by Abxnomore (Member # 18936) on :
**dosages edited**
[ 08-06-2011, 09:20 PM: Message edited by: Lymetoo ]
Posted by Rumigirl (Member # 15091) on :
Wow, this is incredible! I only started the Amoxi when I needed to take it after a tooth extraction. I didn't really think that this rx was going to be useful for Lyme. But I continued on it. And now I see that it has surely been only making the spiros resistant, as the dosage is so low!! Completely discouraging about this "LLMD!"
I'm between a rock and a hard place in terms of needing him, but his initial view of me, plus I can't get another appt anyway so far. After spending $1,100 for the first appt no less! With next to no reimbursement.
And then the issue of my organs : - ( Maybe orals for a while, while I get my organs back into shape (which I've been trying to do since February!). Lord have mercy!
Posted by Lymetoo (Member # 743) on :
Please share dosages through PM.
Posted by Rumigirl (Member # 15091) on :
Help! Could people PM me the dosages that you mentioned, since they have been edited out for the most part? I get the gist, but need the info that was posted. Thank you.
Posted by Lymetoo (Member # 743) on :
I'm sorry, Rumi!! I wish I had contacted you first!!!! Posted by Rumigirl (Member # 15091) on :
I know you have a hard job, Lymetoo. I didn't realize that it should be by PM only.
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