does anyone know if they did anything for coinfections, mold, virus's, parasites and whatever else we are fighting?
was the ceftin protocol at the end-after all the other stuff was txed? or was the ceftin THE drug that made them better because they pulsed
i mean...kill the lyme and then everything else just goes away?
OK-I READ THE PART OF THE BOOK THAT DESCRIBES THIS SO I AM GOING TO EDIT HERE IN CAPS.
1-THEY DID TX FOR COINFECTS SEPARATELY-I DID NOT SEE ANYTHING ABOUT MOLD, PARASITES, ETC IN THIS ONE PART-BUT I ASSUME WHAT EVER IS IN THE GUIDELINES WAS FOLLOWED AS FAR AS SUPPORTIVE STUFF. I KNOW DIET, REST, EXERCISE ETC IS COVERED IN GUIDELINES.
ONE OF THEM TXED 26 MMONTHS UNTIL SX FREE. ANOTHER ONLY 3 MONTHS. THE KEY IS TO TX UNTIL SX FREE. THEN STOP-LET ALL SX COME BACK...THEN TX AGAIN TIL SX FREE. EVENTUALLY...THE SX WILL NOT COME BACK-BUT IF THEY DO TX AGAIN.
ALSO HIGH DOSE WAS USED, BUT I DON'T KNOW WHAT THAT IS...SEE POST I ADD AT THE END OF THIS
[ 05-14-2009, 10:26 AM: Message edited by: lpkayak ]
Posted by Lymeorsomething (Member # 16359) on :
I think that if they did, they would have said so...perhaps Dr. B felt lyme was his main issue and it looks as though he was right...
I just started Ceftin. I can say that it's easy to tolerate....I just hope it does something good...
Posted by lpkayak (Member # 5230) on :
i'm glad to hear you say it is easy. i star t it in about 2 weeks and i have been reading about others havign trouble with bitter taste
does anyone know what page in cure unknown pam talks about the ceftin pulse? i can't find it.
Posted by radfaraf (Member # 11909) on :
p290-292
Posted by lpkayak (Member # 5230) on :
wow-thank you. so fast!
Posted by radfaraf (Member # 11909) on :
I looked up ceftin in the index, that is how I found it, my memory isn't that great .
Posted by mojo (Member # 9309) on :
I'm doing this too! I've been off the Ceftin for about two months now after my first "round".
I'd like to stay in touch with you, if you don't mind.
I am also wondering about the co-infection thing.
I was very ill for three weeks )after going off the Ceftin)and then came out of it and now I feel better than I have in years. I'm not totally well but this is a strange turn of events. I thought I'd keep sinking but I came out of it. Not sure what to think about all of this.
[ 05-15-2009, 10:12 PM: Message edited by: mojo ]
Posted by Lymeorsomething (Member # 16359) on :
mojo, I just started Ceftin...i'd love to know how you make out as well...
Posted by mojo (Member # 9309) on :
Are you pulsing it?
I did very very well while I was on it. It was very tolerable for me. (didn't like the taste though)
Posted by Lymeorsomething (Member # 16359) on :
No, I'm on it steady right now.
Yeah, biaxin is like Skittles compared to the Ceftin (taste wise) Posted by nenet (Member # 13174) on :
This is very interesting to me as well. I am on Ceftin but still haven't made it up to a full dose after several months (too sick, Herx too hard). However I am still Herxing with each dose increase.
If I ever get to a level that I can tolerate large enough doses, I would love to try this apporach.
Also, Lymeorsomething: mmmmm, Skittles. I could go for that any day over Ceftin, and I don't even like candy.
Posted by lpkayak (Member # 5230) on :
well-lets keep this as the ceftin club and keep in touch...but i thought dr b was on it two yrs b4 he went off...am i wrong? have you guys been on it 2 yrs or did your sx just go away quicker?
Posted by Lymeorsomething (Member # 16359) on :
I'm only a week in...long way to go for me. I have a feeling it will take me several months to reap any benefit...
I hope it works.
Posted by mojo (Member # 9309) on :
So what is the dose that everyone is taking??
When I'm on it I take 1000 mg 2 x per day.
I was only on for 30 days but I am three years into treatment.
Posted by lpkayak (Member # 5230) on :
i would like to see doses everyone is on-without mentioning doc
also-maybe say if you are overweight-normal weight-or underweight-that matters with some drugs
so-the list so far is:
1000mg 2X per day
125mg-500mg every 12 hrs based on weight(for children
1000mg every 12 hrs and adjust(for adult)
Posted by nomoremuscles (Member # 9560) on :
This is very interesting.
I'm sure in another year or so we'll have good answers on the efficacy of this protocol. When I read PW's book and hit on this part I got very excited, as I'm sure many Lymies did. Lots of readers are probably are in midst of testing this out right now.
So if it takes three cycles at 3-4 months on and 3-4 months off -- if I remember correctly -- we've got about another year before we hear the results from a lot of "cured" or disappointed Lymies. Or, most likely, some combo of the two.
Posted by CTMomof3 (Member # 15493) on :
my son is on ceftin too - 250 mg / 2x day along with zithro - into treatment about 2 weeks so far. Too early to say how effective it's been. He's not really complaining about the taste, but I dipped my finger in it & thought it was horrible! God, I hope he doesn't have to stay on it for 2 yrs.
Posted by lpkayak (Member # 5230) on :
muscles and mom if you reread the first post (i edited it)-it shows everyone is different. you tx til you are sure all sx are gone. then you let sx come back all the way before you tx again. some 26 months. some 3 months. and probably everywhere in between. we're all different.
Posted by Lymeorsomething (Member # 16359) on :
I'm on Ceftin 500 mgs 2x per day and Zith 500 mgs 2x per day (I'm male/about 165 lbs.).... I see a new LLMD soon but am hoping to continue the Ceftin through the summer at least to see if any improvements are noted...
I don't want to take a break from it unless I see improvement first obviously...it may take a while...
I'm only about 2 weeks in but I believe that I may be experiencing some herxing in the form of worsening fatigue and joint aches...and mildly increased twitching...
Posted by blinkie (Member # 14470) on :
I took a normal does of omnicef and zith for 10 months. I made huge improvements. Now that I've been off for two months, my heart symptoms are back worse than ever.
Posted by Lymeorsomething (Member # 16359) on :
Blinkie, what kind of heart symptoms were you having? I get weird heart stuff on occasion but seem more stable on abx...
Posted by lpkayak (Member # 5230) on :
blinkie did you read p.209-292 in cure unknown?
is omnicef a form of ceftin?
Posted by mojo (Member # 9309) on :
I'm in the middle of my "second round" of Ceftin. I crashed big time a few weeks ago. This time we added Biaxin - Dr. B was consulted and said that you have to treat the co-infections, as well.
So..... wondering if this would have been a better idea AFTER hitting the co-infections?
I do know that it is helping me make great progress.
Posted by seekhelp (Member # 15067) on :
Gosh I wish that doc would work with me and consult with Dr. B!! I'd do anything. You have no idea how much easier my life would be Mojo. Would begging/pleading help? lol.
I think Biaxin is an important Lyme drug.
Posted by mojo (Member # 9309) on :
Yes, Biaxin has been my friend. When I didn't even know I had Bart it was helping me with that, too.
I know Dr. B consults with many Dr's. Maybe you can casually ask him if he has ever done that - like in conversation so he doesn't feel insulted?
Posted by steven (Member # 13101) on :
what do you combine ceftin with? also anyone with tinidazole?
Posted by Myco (Member # 9536) on :
I still don't get how these people got well with just Ceftin without treating co-infections. If this is true then why don't all the LLMD's treat with just pulsed Ceftin?
Where is the logic in this?
I am beginning to think the co-infections are opportunistic and once the Lyme is treated everything else is dealt with by the immune system.
Anyone else with me on this?
Posted by MariaA (Member # 9128) on :
Pam talks about treating babesia extensively when she describes her lengthy treatment in her book.
Posted by migs (Member # 16496) on :
The idea behind it is spirochetes prefer to be in spiro form breeding and playing....what causes them to morph out of this state is the antibiotics in your blood.
You stop all antibiotics and allow your body to be Shangri-la for the spirochetes and then hit them hard with a bactericidal like Ceftin or penicillin. The survivors will hide and then you go off abx again until you feel terrible and they are all playing again and hit them again. It took three waves of this according to Pamela Weintraub.
Updates anyone?
Posted by Cindy Ss (Member # 20797) on :
My 3rd week of Ceftin after 6 weeks of Doxi.
I am on 500mg 2x per day but can only handle 1 x day at this point due to such bad nerve reaction, anxiety & internal tremors increase when I try to take 2x...
After 8 weeks of treatment on these abx no big improvments other than not quite as fatigued still no stamina to leave house much.
Never had anxiety before but now with high doses of these drugs it is awful.
My Dr. says there are so many other abx to try he may move me to Zithromax soon.
I do think that I have made some improvement with the Ceftin, when I have gotten ride of the anxiety & internal shakes I will go to 2 x day until I can't take it any more then bump back down to recover.
I can't handle any other way at this point.
Hope its hitting the lyme this way...
CIndy
Posted by jtavares76 (Member # 19216) on :
I'm into my third month of Ceftin. So far I have tolerated it fairly well.
I am herxing about every 3-4 weeks. I usually experience an increase in fatigue, body aches, headaches, and muscle twitching. The excruciating leg pain returns as well.
However, herx ends in a few days and I generally feel better than I have in months. When I am not herxing, I am at about 80%...big difference from when I could not get out of bed in January!
I take 500mg twice a day (120lbs)along with a supplement protocol.
JT
Posted by 2roads (Member # 4409) on :
Does the morph form have to come out to survive, and if it does, is it once a month?
I ask this in terms of pulsing.
Thanks,
2roads
Posted by mojo (Member # 9309) on :
I am in my second round on my third month. I will need at least one more month before I go off again, I think.
We added Biaxin and now HH to the Ceftin as dr. B said this is for Lyme only and you have to also treat the co-infections.
Personally- I think this is for AFTER the co-infections have been treated and we are just dealing with Lyme.
In my first round I felt fine just on the Ceftin but second round I added Biaxin and when I ran out of Biaxin and was just on Ceftin I started to feel sicker. I added in some HH and I'm feeling better (but not great).
Hope this makes sense. Brain fog today.
Posted by btmb03 (Member # 18394) on :
Yikes - sounds like Cetin packs a punch and I'm getting ready to add it to my regimen.
For ultra-sensitive people like myself what do y'all think is a good starting dose? 1/4 pill?
Hearing everyone's experiences makes me jittery to start it though I'm well overdue but glad to hear at least for some of you it hasn't been that hard.
Posted by mojo (Member # 9309) on :
I went with the full dose immediately and had no problems. Then the second round I even added Biaxin.
If you are real sensitive 1/4 pill would probably be a good place to start and then go from there.
Posted by btmb03 (Member # 18394) on :
Thank you mojo, did you take Ceftin as monotherapy initially or with another drug?
..And, how did you react when you added the biaxin? PM if you prefer..thanks!
Posted by Amanda (Member # 14107) on :
I tried to go off Ceftin several times, and within 2 days my symptoms come roaring back.
Am battling dreaded protozoa. I think if you have con-infections, then pulsing is not going to work. I had one LLMD tell me that one way to see if patients have co-infections was to ask them to stop abx. If symptoms come back within a few days, it a sign the co-infection are preventing abx from getting rid of lyme.
Posted by Elaine G (Member # 20735) on :
I have been on Ceftin for 7 weeks, 500 mg twice a day working up to 1500.
I started with 1/4 pill of Ceftin then went to 1/2 then one pill. Then slowly increased.
First die off after 3 weeks that lasted 5 days. Next die off was just short of 3 weeks, lasted 4 days. All symptoms magnified during the die off.
So far, I feel the same as before starting treatment.
I am also on Malarone 250/100 4 pills every day.
Flagyl, 500 mg now up to 3 per week.
Plus Artemisiae and HH Capsules. Plus a host of supplements
If you can' stand the taste of Ceftin get empty 00 capsules from your pharmacy and put the Ceftin in the empty capsule. It will help your stomach also.
I put all my meds including HH and Artemisiae in capsules.
Newly dignosed having been sick for 11 years with Chronic Epstein Barr, HHV-6 and CFS. Two Lyme tests were negative, PCP didn't use a tick testing lab. Clinical dignosis for Babs and Bart.
Posted by CherylSue (Member # 13077) on :
I've been taking Ceftin 500 mg BID on and off all year. I've been taking it since June when I had another relapse just from taking Flagyl alone (low dose.) I'm also taking 1 malarone once a day.
It's been a roller coaster ride for me. Up and down.
I return to work Wednesday full time. Lucky???me.
CherylSue
Posted by mojo (Member # 9309) on :
Little update:
I was on my second round of Ceftin - about four months into the second round. My Dr. asked me if I felt it was doing anything for me and I felt "yes" for the Lyme but that we needed to address my other issues first or at least at the same time. He agreed.
So I'm off the program and back to Rifing for everything right now.
We are testing for molds and viruses now, too.
How is everyone else doing on the protocol??
I was taking Biaxin and then HH for the Bart along with the Ceftin.
![[Smile]](smile.gif)
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