Pulsed Antibiotics: The Future for Chronic Lyme?

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pcpc
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Date Joined Feb 2009
Total Posts : 214
   Posted 10/6/2009 3:06 PM (GMT -6)   
I am working with infectious disease specialist, Dr J (SC) and am excited to share his concept of "pulsed antibiotic therapy" and how he is treating me and hundreds of others, successfully, For the first time in over 1 1/2 years I feel I am getting my life back.

The 3 major players in chronic Lyme are Borrelia (Lyme), Babesia,and Bartonella. Sure we are also teaming with viruses, yeast, Mycoplasma, and other undesirables but he believes that if you can get the big 3 under control you can eventually get the immune system back into a functional state.

According to Dr J these 3 organisms are almost always present in chronic infections and fortunateley they divide slowly-which allows for dosing antibioitics every other day. He has been treating patients this way for the past 5 years with good results. He uses all antibiotics, orally or intravenously, on alternate days- typically M,W, and F.

I am currently doing Clindamycin 900 mg twice daily intravenously M,W,and F with Azithromycin 500mg, also intravenously. In addition I am doing 1000 mg Artemesinin and Mepron (2 tsp) orally twice daily on theses same days. After one week of this, he had me add in (oral)Bactrim DS, 1 1/2 tablets again M,W, F. I also add Flagyl 500 mg twice daily on Th and F (orally). These drugs are treating Babs, Bart and Lyme forms.

On the days when I am not infusing/taking antibiotics he has me infuse one liter of Lactated Ringer's solution which he feels helps buffer the body (help it be less acidic) and "flushes" the organs.

Every 2 weeks he has me take a full week off treatment to see how I am and this (he believes) allows the immune system an opportunity to regain strength. How you do on the week(s) off allows him to get a glimpse of how well the immune system is recovering. This is a technique he used for years in his HIV patients and I think it makes a lot of sense as a physician.

The key to this disease is not to eradicate every last evil bug- rather it is to get the infectious load down low enough so that our immune system can recover and take over its job. Antibiotics are great but if they are poisoning your livers, and suppressing your immune system they can be counter productive.

I believe the reason some of us do not recover is: the 3 big players are not addressed and the immune system is not brought back.

Regarding the first, it is great to test for co-infections but if negative these tests should NOT preclude treatment. All patients with chronic Lyme should be treated for ALL 3 big players (Bart, Babs, and all forms of Lyme). Demand treatment for all 3. Babesia is the hardest to eradicate ie long term Atemesinin is needed (I'll post more on this).

Regarding the second, the immune system should be supported as much as possible, ie transfer factor?, treating for yeast intemittently, taking breaks from antibiotics. If the immune system is not supported you will keep "chasing your tail."

Thus far, I feel the best I have since becoming ill summer 2008. The best part is that I can sort of get my life back- as I know which days I am infusing. He also has some novel ways to deal with herxing and detoxing (see my next post).

My hope is to get other doctors involved in clinical trials with his protocol. I am meeting with a doc next week here in Boston to see what can happen. If you have a doc that may be interested let me know. It would be great to get some other infectious disease docs involved.

It's time for us docs to stop fighting and start communicating and working together!
Grew up with Lyme? TB aged 12 so did 2 yrs antibiotics as a kid. Weak immune system lifelong until self diagnosed Lyme 2003. Treated successfully with Cowden herbs until rebit 2007. Babs, Bart and Lyme treatments- currently using IV Claforan, IM Bicillin, oral Azithromycin, and pulsed Flagy, with herbs, acpuncture, homeopathics and amalgam removal.


Willowrose
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   Posted 10/6/2009 11:06 PM (GMT -6)   
That ws very interesting. I have babesia, bartonella (x2), and lyme and am taking azithromycin, mepron, and artemesinin. You are taking a lot of other medications as well, and you take more mepron than I do. How are you tolerating all of that? I've always got yeast lurking in the background and must be very careful with my diet to keep it minimally at bay. Are some of the meds you are taking for the yeast? Prior to starting treatments for my newly-discovered infections I've been a natural-healing type of person. But I've been so sick and my lyme doctor, a holistic physician, thinks antibiotics are the way to go and this time I agree. I printed your post and will take it to my next appointment to see what he thinks.

I'm new here and don't know much so forgive my ignorance - since you are getting IV treatments do you have a port? Do you get the treatments in a doctor's office or do you do them yourself? When you first stated them were you in a doctor's office in case there was a negative reaction? Do you take probiotics? Are you on a special diet?

I'm really behind the idea of letting the immune system take over. I've had this for many many years (probably more than 20) and my body, until the last couple of years, prevailed most of the time. Can you explain what tansfer factor is?

Sorry to ask so many questions!

Thanks

Rose

Willowrose
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Date Joined Oct 2009
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   Posted 10/6/2009 11:19 PM (GMT -6)   
Oh - in re-reading your post I see you ARE a doctor, so probably you didn't need to be in a doctor's office for the IVs. I'm looking forward to reading your next post.

Rose

KeepHope
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Date Joined Oct 2008
Total Posts : 222
   Posted 10/6/2009 11:20 PM (GMT -6)   
I totally agree with pulsing and cycling and based on my responses and my body reactions I guided my doctor and he agreed to do it.

i am being treated by a new clinic who is hitting it hard all the time and I am doing ok but did tell them i believe in breaks and cycling. They do kinda do pulsing as they do 3 days a week of a combination and then the other 4 differently.

But .. I really do agree and think this is something more doctors should do instead of hit it and tell people to just stay the course.

You do have to give your system a chance to take a breath and re coup because its that immune system your counting on to carry you through and forward into the future..

Willowrose
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Date Joined Oct 2009
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   Posted 10/6/2009 11:26 PM (GMT -6)   
I'm doing pulsed therapy, too, on a smaller scale. The artemesinin I take 2x a day for 3 days, then 4 days off. The Mepron I take 2x a day for 3 weeks, then one week off. The azithromycin is 2x a day every day with no breaks.

Keep Hope - how can you tell how your body is reacting? Have you been doing this for awhile? So far I pretty much feel terrible every day.

Rose

KeepHope
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Date Joined Oct 2008
Total Posts : 222
   Posted 10/7/2009 12:24 AM (GMT -6)   
Hello Rose

well. The reason i said that was a lot of times If I took a combo of meds if I went past the 4th or 5th day I would feel horrible and stay in a herx mode and stay stuck there.

Every combo was different somewhat but a lot of the times I ended up either M W F or 3 days in ar ow on and 4 days off or 4 days in a row and 3 days off.

So i felt out each combo. IF I started to herx I stopped the med and then kept track of how long it took for the herx to subside.

Then i just keep that schedule until it was easier and sometimes increasing the day on if possible after a few months.

Like I said each med or combo is different.

On your meds try to figure out which one or ones are causing the biggest herx or making you feel terrible. Then maybe adjust that one.


Did you start all this at once? Or one at a time?

It might help to try ti figure out which is making you feel worst as a first step.. Thats just my advice and what i do.

let me know.. what you think of that

Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 10/7/2009 11:23 AM (GMT -6)   
KeepHope,

Thanks for your response. This is all so nebulous. Lyme, babesia, and bartonella cause so many symptoms; the meds can cause symptoms; and a response to the meds can cause symptoms. I'm still trying to understand how I will know if I am having a herx versus just swinging with the cycle of the various bacteria versus reacting to the medication itself. I'm guessing the latter would cause more serious symptoms than the first two.

I started the azithromycin first. Then we added the artimisinin, then the mepron. My doctor starts me on a low dose and I build up over a period of 3 days to the full dose of each medication. Today is my first day on a full dose of mepron. It's difficult for me to tell if I am having a herx reaction, because I felt terrible going into this. I wouldn't say I am worse than usual, but before I started meds there were days when I felt pretty good. Very few in the last 6 months or so. I've only been on meds for a month and a half.

The one thing I know bothered my stomach was the trazadone that the doctor gave me to help me sleep. It did work for the sleep but I had a terrible stomach ache every day, so I quit taking it.

I'm thinking of starting a journal so that I can keep track of my symptoms. Maybe that way I can tell if I'm doing better or worse.

thanks again,

Rose

kendal122
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Date Joined May 2007
Total Posts : 1087
   Posted 10/7/2009 11:42 AM (GMT -6)   
where is DR. J located ? pcpc what was the best abx you think you took for bart? Thanks,

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 10/7/2009 11:55 AM (GMT -6)   
Currently South Carolina, but the medical board is forcing him to move to DC next month!

I used to think it was a matter of finding "the drug." I now see treatments as a dance. Multiple drugs need to be used against all 3 bugs I think in unison so that the immune system can finally get better- they all 3 drag it down and just when you treat one, another raises its ugly head.

I was certain that my 5 months Mepron/Zothro and 18 months Artemesinin cured my Babesia--- well they didn't. It's in my liver and though I no longer have headaches and vertigo it is dragging me down while trying to treat Bart.

I think the best Bart drug is Levaquin and Dr J is planning to use it IV (which is very nauseating) - but we will pulse it in on M,W, F with drugs for Babesia and Lyme. Rifamipicin and its related cousins are also excellent for Bart. And Bactrim is good for Bart and hits Babs. OIn fact many drugs have some cross cover.

I really do think that the answer is going to be high doses, multiple drugs pulsed alternate days with drug holidays. I plan to work to develop satellite centers so that such treatments can be available to all. Currenly most LLMD's are unable to offer unusual treatments but we can push for research using such therapies.
Grew up on Cape Cod with Lyme... (TB aged 12 so did 2 yrs antibiotics as a kid). Weak immune system lifelong-self diagnosed Lyme 2003. Treated successfully with Cowden herbs until rebit 2007. Babs, Bart and Lyme treatments- currently using IV Clindamycin/Azithromycin and oral Mepron, Bactrim and Flagy- pulsed therapy.


pcpc
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Date Joined Feb 2009
Total Posts : 214
   Posted 10/7/2009 11:59 AM (GMT -6)   
Willow rose, even though I'm an MD any new drug has to be given with an IV nurse and epi pen near by or in a dotor's office.

Regarding Mepron dose-- the dose I am doing is double but is only given M,W, F- so it is not as toxic as every day dosing. I can not tell you how nice it is to not have to drink that gross yellow stuff every day. I never dreamed that I would be back on it but alas, I am.

It is interesting to note that my liver function had been fluctuating while on continuous IV Claforan-- Dr J thinks the liver enzyme elevations are not due to drug reaction on the liver - but due to excessive killing of bugs in the liver. Continuous killing of so many bacteria/protozoa can bee too much for our body to handles- another reason that pulsed therapy makes so much sense.
Grew up on Cape Cod with Lyme... (TB aged 12 so did 2 yrs antibiotics as a kid). Weak immune system lifelong-self diagnosed Lyme 2003. Treated successfully with Cowden herbs until rebit 2007. Babs, Bart and Lyme treatments- currently using IV Clindamycin/Azithromycin and oral Mepron, Bactrim and Flagy- pulsed therapy.


Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 10/7/2009 12:15 PM (GMT -6)   
pcpc - Thanks. I copied your response to show my doctor.

Rose

Dealie
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Date Joined Sep 2009
Total Posts : 14
   Posted 10/11/2009 12:27 AM (GMT -6)   
Thank you PCPC for this fabulous information and to you too Willowrose for your help. It has been great to find this site! Off to bed, thank you all for leaving me with great hope!

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 10/11/2009 4:26 AM (GMT -6)   
... if I have a pulse, it's a good day ...
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Flagyl, Hydrocodone, Glutiathione injections, Vitamin B compound, Invanz IV, LD theme song: http://www.youtube.com/watch?v=MgHioCC3yCo&feature=related
 


Dealie
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 10/11/2009 2:35 PM (GMT -6)   
PCPC, I have a question for you. I have been reading up on Schallers 2009 Babesia update and it states that if you do not get rid of Babesia totally, it will reinfect you. Do you think that is possible with pulse treatment? I thank you so much for your help with this-

Happyhelene
New Member


Date Joined Feb 2013
Total Posts : 10
   Posted 3/22/2013 10:57 AM (GMT -6)   
Very interesting post however the protocol leaes little hope for those of us (a huge group) that cannot afford IV treatment.  Any thoughts on oral treatment pulsing?  I stopped antibiotics a month ago and now take an immune supplement call 4Life Transfer Factors TriFactors plus ... it has made a huge difference but Lyme symptoms reappear a week before my period so LLMD suggested I take antibiotics (Zithromax and omniceff - I could not tolerate doxy) for a week prior to period.  I am open to any information you may have on pulsing oral antibiotics.  I'm using A-Bart also during weeks I am not an antibiotics.

bluebyyou
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Date Joined Nov 2006
Total Posts : 1419
   Posted 3/23/2013 3:04 PM (GMT -6)   
This is really interesting! Thank you for sharing!

Razzle
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Date Joined Aug 2007
Total Posts : 3956
   Posted 3/24/2013 6:49 PM (GMT -6)   
What I've observed more recently is it seems more common to pulse cyst-busters (e.g., 1-2 weeks/month, or 2 days/week) than other abx.
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Andrographis & other herbs, homeopathy, supplements, etc.

LymePickle
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Date Joined Mar 2014
Total Posts : 828
   Posted 6/8/2014 5:10 PM (GMT -6)   
Wanted to bump this to the top. Another person who got well with pulsing. I think what happens in Lyme disease is persistence but not resistance.
Caught Lyme, Bartonella, and Mycoplasma Pneumonia from a friends tear in an unlucky casual contact. Lyme is definitely spread in bodily fluids and I am living proof of that.
ABX: Minocycline 200 mg day, Tinidazole 500mg 2 x daily, Septra DS 1 pill 2x day, Plaquenil 200 mg 2x day.
Other anti-microbials: Houttuynia, Banderol, Samento, Japanese Knotweed. So close to finishing yet so far!

skBM
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Date Joined Jun 2011
Total Posts : 279
   Posted 6/8/2014 6:06 PM (GMT -6)   
LymePickle, what was your regimen for pulsing?

stacestar
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Date Joined Jan 2014
Total Posts : 396
   Posted 6/8/2014 6:08 PM (GMT -6)   
I haven't had time to read through all the comments, but in response to the initial post, it reminds me of how I read Dr. Joeseph Burrascano treated his own lyme. According to Pamela Weintraub in the (very good) book "Cure Unknown; an inside look at the Lyme Epidemic), she said that Dr. B told her to treat her lyme with pulsing; that that was how he got rid of his.

In the book she says he told her three times. Three times take a break from the abx and let yourself get sick again, really sick, then start the abx. He said a cycle of three times for this worked for him. She wrote that she did this for herself, letting herself get really sick in between, and then start up again, and lo and behold, it did it. Now, she had been on abx for awhile before that idea, but according to what she writes it seems as if she attributes that plan to really helping her succeed in getting over it.
I wonder why all lyme dr.'s don't pulse? I like the idea, but my son's llmd doesn't do that.
He's been on abx for 16 weeks now and I'd love to give his little body a break; he's only four. He tolerates the abx pretty well, but I'd like to try pulsing.
Maybe I'll mention it at the next appt.

LymePickle
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Date Joined Mar 2014
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   Posted 6/8/2014 7:31 PM (GMT -6)   
Ya... I've been on abx for way too long, i would say I've been virtually symptom free for the past 2 months now. But as soon as I "test the waters" sort of speak and come off antibiotics so miss a dose, the symptoms come right back!!! It's frustrating.

I think what happens with Borrelia, is persistence, not necessarily resistance. It is a very slow growing germ, but I think it relapses because some germs go dormant during abx treatment! My theory is that we want them to resume their normal cellular metabolism and wake them up again so we can effectively kill them.

Also pulsing abx gives your body time to repair, mobilizes the immune system, and as soon as the germs start their metabolism up again we can stun them with abx and the immune system can do it's work.

That's what tetracyclines like our doxycycline and minocycline do. They bind reversibly to the 30S ribosome which takes RNA and transcribes it into protein. But if you keep the tetracycline on them some of them freeze up and go metabolically inactive only to become active again later. If we give them abx when they are in the middle of a process like reproduction it can kill them.

I don't have a regimen for pulsing yet. I took yesterday evening off all abx (except my Septra DS which is for Bartonella). And the symptoms came back big time, all my remaining symptoms are brain symptoms! The infection lingers in my brain!

So I gave it a shot of 200 mg minocycline and 500 mg tinidazole and totally knocked it back out, I think I actually had a little herx by doing that. No symptoms now since that dose I took in the morning.

But 200 mg minocycline is too much at once!! It gives me a little headache after. And taking so much tinidazole scares me because it could cause DNA damage!

I think the ultimate plan is to go 100 mg minocycline and 250 mg tinidazole every second day. These are also MUCH better tolerated doses. I will just take them on an empty stomach.

That will lower levels down enough so they will resume metabolism, and maybe even come out and think it's safe, then hit them.

I see lots of "cures" done by pulse dosing. Lyme is such a slow growing germ that abx resistance actually is not at all an issue. The issue with lyme is persistence!

Post Edited (LymePickle) : 6/8/2014 6:34:03 PM (GMT-6)


pictureofhealth
Regular Member


Date Joined Dec 2013
Total Posts : 210
   Posted 6/8/2014 7:31 PM (GMT -6)   
LymePickle, I 'm so glad you found this post. This is the protocol my LLND follows. She said this Dr J is the doc in Under Our Skin film who treats the really sick girl. I feel like I'm such a freak and no one understands this pulsing method...but hey I'm getting better:)

LymePickle
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Date Joined Mar 2014
Total Posts : 828
   Posted 6/8/2014 7:59 PM (GMT -6)   
Hi picture of health

What abx or herbals are you taking?

Also as an aside, even the Cowden protocol has points of interrupting treatment and then resuming!

pictureofhealth
Regular Member


Date Joined Dec 2013
Total Posts : 210
   Posted 6/8/2014 11:56 PM (GMT -6)   
LymePickle right now I on:
IV Clindamycin and rocephin
Oral - azith, Omnicef, Bactrim, Super Artemisinin, Plaquenil, just added Xylitol, Lactoferrin
Doc just had me order Sida acuta and Cryptolepis
The nice part is I only take them 9 days a month.
I did take doxy, mino, and mepron (couldn't tolerate mepron)

LymePickle
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Date Joined Mar 2014
Total Posts : 828
   Posted 6/9/2014 12:02 AM (GMT -6)   
Wow, quite the list. Are you being treated for all of the 'big' 3 infections Borrelia, Bartonella, and Babesia? How are you pulsing them?
Caught Lyme, Bartonella, and Mycoplasma Pneumonia from a friends tear in an unlucky casual contact. Lyme is definitely spread in bodily fluids and I am living proof of that.
ABX: Minocycline 200 mg day, Tinidazole 500mg 2 x daily, Septra DS 1 pill 2x day, Plaquenil 200 mg 2x day.
Other anti-microbials: Houttuynia, Banderol, Samento, Japanese Knotweed. So close to finishing yet so far!
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