I could really use some help in thinking about my Lyme treatment. I have been on Amoxicillin at 1g 3X/day for 7 weeks, and started to feel better, without any herx, within about 5 days. Then I sort of plateaued. I tried adding Biaxin and Zithro and each gave me wicked herxes, so I backed off those. The doctor then switched me to Doxy, which made some symptoms go away that had not on the Amox. But given my raw stomach, the doc did not think my stomach would tolerate the necessary doses of Doxy. So, I'm back on Amox. My LLMD's plan, generally, is to knock down the spirochete load, then treat with 2 months of Flagyl to get at the cysts.
I am concerned that, since I feel almost no effects of the Amox, it is not continuing to get at the Lyme bugs.
I would be interested to know whether others continued treatment long term, and continued to improve, slowly (perhaps nearly imperceptibly), without herxes. Or does one need to ramp up to stronger/herx-initiating medication to kick out the Lyme for good?
Any insights you can provide would be incredibly appreciated, as I've gone round and round in thinking about what's best, and patience is not one of my virtues. :-)
Posted by canefan17 (Member # 22149) on :
That's what she said!!
Oh I'm so immature
The consensus hear will tell you to take it slow. Too much of a herx is counterproductive and is just a sign that your body isn't ridding itself of the toxins and they are simply re-circulating.
Dr Burrascano (this might be a myth, not sure) took high doses of Rocephin/Ceftin 3g+ ... then would stop abx's and allow Lyme to come back. Then hit it again - and repeat.
You'll come to your own conclusions during treatment.
I believe it's a marathon - not a sprint.
[ 01-11-2011, 08:51 PM: Message edited by: canefan17 ]
Posted by Hambone (Member # 29535) on :
quote:Originally posted by canefan17: I had to laugh at the title (What a "that's what she said" opportunity)
Oh I'm so immature
Me, too My mind totally went in the gutter.
Did Burrascano have Lyme? I had no idea.
I read that Herxing too long, and too badly, will cause damage.
Posted by Abxnomore (Member # 18936) on :
Yes Dr. B had lyme. Several of the big name LLMD's did or a family member, hence; their understanding that 3 weeks of doxy wasn't doing it.
It's really a very personal decision and it depends how your body reacts to the slow and steady vs. the hit'em hard approach.
I took massive doses of ABX. The low does made me feel worse and never got up to my brain.
Amox in low doses is really not that effective, as it won't pass the BBB.
Also, you mentioned trying many different ABX. I don't know if you tried these within a short period of time but generally it's not good to change ABX before at least three if not six months have passed to give it a chance to work and to avoid building up resistance, unless one is having a terrible time tolerating that particular ABX.
Since you didn't give specifics I don't know if that is the case with you but just wanted to mention it.
Posted by lululymemom (Member # 26405) on :
canefan, it was my understanding that Dr. B. took 1500 mg Ceftin not IV Ceftin.. I also thought he never took anything else. I could be wrong but it would be good to get some feedback about this.
Posted by canefan17 (Member # 22149) on :
Ya, I think WildCondor has said 3g ceftin and ceftin only.
1500mg wasn't near enough if I recall.
Posted by springshowers (Member # 19863) on :
I never thought taking bigger doses was the best thing or the thing for me.
But in the end. IT was going hard and strong with a hard and strong detox program that helped me the most and made movement for me towards health when NOTHING else and no other method would.
That slow and steady sounds good but sometimes too slow (for me) never got me ahead even after many years.
So now I know better and though each of us is different. If you do choose to go harder and stronger make sure you are detoxing and supporting your body and such just as much along the way and more than you ever have or thought you should..
Posted by lyme in Putnam (Member # 11561) on :
Hitting it hard almost put me in a psychiatric ward. Slow.
Posted by lyme in Putnam (Member # 11561) on :
Hitting it hard almost put me in a psychiatric ward. Slow.
Posted by Abxnomore (Member # 18936) on :
That's why detox and making sure you have good liver (both phase I & II) and kidney function is so important.
Like I said, it's not for everyone but I did the massive doses from the get go and it was the massive doses that gave me back my mental clarity.
Posted by 365SunnyDays (Member # 29969) on :
I was laughing out loud at the first few replies, because I had thought about the alternative reading of the subject line, but then thought -- nah, no one will read it like that!
With regard to detoxing, is there something you all would recommend? I'm taking Liposomal Glutathione for liver/immune support, as well as tons of probiotics, transfer factor, multi-minerals and the Zhang Protocol of herbs. Hard to imagine adding more supplements into this routine.
Posted by Abxnomore (Member # 18936) on :
Hot baths with Epsom salts and infared sauna.
Get checked for heavy metal toxicity and detox for metals, if necessary. Remove mercury amalgams if you have them.
Posted by springshowers (Member # 19863) on :
Read the "Detox support thread" here on this forum. It has a long list of things I did and many others added in what they have done that was great for detox. Not talking about supplements at all. More things you can do such as Abxnomore said and such.
I did ionic foot baths and full baths and IV ringers and IV Glutithione and Cold Laser lymph drainage and ozone saunas and such.. and the only things I took internally was Welchal and or Cholestromine and Chorella... and such.. as well as bentonite clay.
There are many things you can also do like rebounding and exercising and well ...
Do a search for that thread it has lots of ideas... to choose from....
Posted by one4islands (Member # 28187) on :
My LLMD believes in "low and slow" approach.
I was quite pleased to hear that upon my initial visit as I was dreading a PICC line w/ IV abx at high doses.
I have a super sensitive gut and thought high dose abx would not be tolerated well.
I have only completed one 30 month round of Zithromax (low dose) and am now on my first week of low dose Cleo (Clindamycin for two months).
After the two months of Cleo he has suggested I research mangosteen as my next course of natural abx treatment.
I feel no difference in my symptoms. I feel about the same, so I suppose it could be too soon.
He has also recommended Samento, Banderol and Lumbrokinase, which I will begin this weekend.
I have a special event to attend on Friday and did not want to feel like poop for it and miss it.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by canefan17:
The consensus here will tell you to take it slow. Too much of a herx is counterproductive and is just a sign that your body isn't ridding itself of the toxins and they are simply re-circulating.
----------------- I believe it's a marathon - not a sprint.
That USED to be the consensus on this board, but I haven't heard many express it over the past few years. I got well going slow. I could not have taken the hard herxing. I herxed continually as it was.
Why not try going back on a lower dosage of Biaxin?
Posted by sixgoofykids (Member # 11141) on :
Different methods work well for different people. My doctor is one who likes to hit it hard with high doses.
You *might* not be on enough amoxy. To give you an idea, I was on 7500 mg per day split over three doses, so 2500 per dose. You can have a peak level test done to see if you're getting enough of it in your bloodstream. That's what my LLMD did for me before he increased my dose to that level .... I did build up to that level, I didn't start out there.
Plus, amoxy is generally given with Probenecid to keep it in the bloodstream longer.
Posted by sutherngrl (Member # 16270) on :
I hit it hard in the beginning, then went to low and slow. Have had better luck with low and slow.
I think different methods can work for different ppl. If you can handle aggressive, then its worth a try.
Posted by migs (Member # 16496) on :
Not to disagree with Burascanno, as he apparently cured many people and himself but other prominent LLMDs use the slow and steady method with success.
2 ID docs who are "above ground" in treating Lyme patients, D and J, both aim to keep you in the functioning zone as much as possible through treatment and don't go straight out nuclear with antibiotics. They are successful but if treatment duration could be shortened with higher doses...not sure.
** edited doctor's names, please see terms of use **
[ 01-12-2011, 09:14 PM: Message edited by: sixgoofykids ]
Posted by Abxnomore (Member # 18936) on :
Whether to hit it hard or slow depends on so many things including your LLMD and how he treats. It depends on how sick an individual is, how many co-infections they have and other pathogens. It's not just a question of preference.
I know in my case without long term IV and then followed by 18,000 grams of amox along with zitho and flagyl, some mepron thrown in as needed, I would never have made the neurological improvement I made.
Posted by DebraKelly (Member # 24925) on :
I would take it slow and as long as you trust your LLMD, you'll make it fine. Too many abx at once, can really be too much!
The one thing that did make a big difference, was adding accupuncture along with my LLMD and his vitamins. It made me feel better, faster - mentally and physically.
It can get pricey but it's worth it. Just make sure to get a really good accupuncturist that is trained in China and knows what they're doing along with complete mastery of herbology.
Good luck.
p.s. - epsom salts helped alot when herxing and feeling horrible.
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