posted
After feeling like I was going to die yesteday, I have decided NOT to take the month long regimen of amoxicillin. I even quit the doxycycline 4 days early.
AND I feel a thousand times better, already, today.
I've been off of ABX for almost 4 weeks now due to low blood counts. I also feel better than I have since last spring. (I've been treated aggressively with orals for over 2 yrs.) I don't plan on taking a permanent vacation from them, but I do think our body may need a break every so often to vamp up our own immune systems.
Wishing Wellness, Jewl Posts: 79 | From Chicago, IL | Registered: Sep 2003
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posted
I have been off all ABX for almost 2 years. I have very late stage lyme and only took ABX for about 6 months. My body just couldnt handle them.
I have been really taking care of myself, eating right, exercise, some homeopathics and rife. Also i worked on healing candida, leaky gut and also i had all my amalgam fillings removed. Next, i have to deal with some root canals.
I just got back from a ski trip and skied double black diamond runs (hard ones). It was wonderful. I am not totally symptom free, but im on my way.
Just wanted to post something positive for everyone. You CAN get well.
Blessings,
Jordan
Posts: 593 | From Miami, Florida | Registered: Apr 2004
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JimBoB
Unregistered
posted
Thanks everyone for your posts. encouraging.
I feel about the same today as yesterday. Should get better after a few days.
At least I don't have the super bad gut, nor the extreme woozyness. Feel better overall than when on doxy or tetracycline.
I was on meds for 1-1/2 years until late December, when I stopped them completely.
I've been following Buhner's protocol for about 6 weeks now, am taking Andro, Cat's Claw, Resveratrol, Siberian Ginseng, and Sasparilla, to treat Lyme and Bart. Also herbal detox supplements, probiotics, cod liver oil, and coconut oil. Added artemisinin 1-1/2 weeks ago (I had babesia and am not sure I got rid of it).
I think it is working but it is too early to tell of course at this point. One thing I do know, is that I do feel better. Except for one day last week when I threw up, I'm not sure why because my stomach had been fine, possibly because I had a chocolate martini the night before for Valentine's Day. :-) Hadn't had a drink for months and months before that.
Please continue to inform us on how you are doing! Your posts have been very helpful to me.
P
Posts: 449 | From Vermont | Registered: Nov 2004
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Ya'll might consider pulsing. I take one 500mg zith once a month--next month I start taking it twice a month two weeks apart.
The Bb is suppose to reproduce every 28 days and the Masters' disease every 14 days.
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
I've been off for a long time. Not sure if I'm getting better or maintaining but it sure beats the alternative. I'd love to hear more about these herbs you take and what exactly they are suppose to do. Anyhoo this is my protocal. so far so good.
D-Mannose,oil of Oregano, Olive leaf extract, Bee Propolis, Garlic, and colloidal silver.
best of luck Posts: 731 | From Humble,TX | Registered: Feb 2005
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posted
Here is excellent info about taking breaks and the slow Bb replication taken from the Jamsek Clinic website..they treat hundreds of lymies.
"Our treatment approach is designed for a Bb organism that is recognized as polymorphic and microaerophilic. Other important features of Bb biological traits are the capacity to exist in either an intracellular or extracellular state.
Finally, Bb has a tendency for latency and for slow replication a fact that has profound implications of the length of antibiotic therapy required for eradication.
The replication rate for Bb has been reported to be between 7 to 33 hours, depending on the environment used for culture and so forth. In contrast, Group A Streptococcus, for example, replicates every 20 to 30 minutes.
Current standards of treatment for streptococcal infections is 10 days, or around 500 reproductive cycles. Given these reproductive dynamics, and realizing this is indeed a crude but interesting analogy, treatment of Bb for 500 cycles could entail more than two years of therapy.
In summarizing all of these considerations, we have concluded that a treatment protocol employing long-term cyclic, pulse therapy with drugs effective against all forms of the organism might be effective, particularly if given in sequence with agents active against the cyst active form administered late in the cycle.
When oral therapy is employed, the idea of a ``drug holiday'' after pulsing seems attractive for several reasons.
First, it gives the patient some relief from daily antimicrobial therapy. Second, even though a typical holiday is scheduled for four weeks, most patients will relapse, or experience the recurrence of symptoms, within one or two weeks of therapeutic interruption.
This is particularly true in the early months of therapy, i.e. after only a couple of cycles. This pattern of relapsing provides useful clinical information for future treatment (see below).
Third, in theory, our treatment and the subsequent Bb ``die-off'', and then relapse off therapy is an approach that might stimulate immune recognition and activation, thereby improving immune surveillance/eradication of Bb.
This idea bears similarities to the auto-immunization theory that has received attention in HIV therapeutic strategies. That is, if one suppresses HIV with drug treatment, the CD8 cytotoxic/suppressor cell level wanes (these are lymphocytes responsible for activity against cellular pathogens, including HIV).
As treatment is withdrawn, the reappearance of the virus causes an augmented or boosted CD8 response that, if repeated cyclically, might build the response to the point that the pathogen could be controlled or eliminated by the immune system.
Our hope is that Bb specific immunity is retained in our patients regardless of severity or chronicity of the infection, and that interrupted therapy will be of some benefit.
Realistically though, this is a grossly oversimplified theory and a considerable amount of scientific work will be required to answer these questions. Regrettably, given the current medical and political circumstances for LD, meaningful clinical, epidemiological, and immunologic research are but a faint hope.
In the figurative sense, if there were a race to cure HIV and Bb (no judgmental view intended here), the HIV researchers would have a 20-year and a several billion-dollar head start, with the Bb folks falling further and further behind each year for the foreseeable future.
Perhaps the silver lining in all this is that all of the wonderful scientific information that has come from the HIV pandemic will benefit our understanding of many other diseases, including neuroborreliosis.
Obviously, our ultimate goal is Bb eradication, if possible, or at least a state of competent immune surveillance resulting in lasting relief from disease. As treatment progresses, return of symptoms off therapy becomes more delayed and symptoms tend to be milder.
On the occurrence of relapse in our cycle, the patient is given the option of resuming therapy at the first sign of relapse or they may simply wait until the four-week period is over.
Interestingly, during that first week or two on holiday, our patients invariably remark that they feel the best they have since becoming ill. Obviously, when a patient ceases to relapse on holiday, it is taken as a positive indication.
It is even more encouraging at that point if the patient fails to exhibit any sign of Herxheimer's reaction (see below) during the ensuing treatment cycle, suggesting that Bb die-off is clinically non-detectable.
In general, we have informed patients that therapy may extend for two or three years before they may reach an asymptomatic state."
posted
I also quit abx after two years of treatment. I do feel they got me to a point but then my body could not handle them anymore. I was a real mess when I decided to quit. The abx were doing more harm than good in my case.
My organs were congested and I was back to feeling like I did before being diagnosed. It will be a year in April with no abx and I do not regret my decision. I actually feel much better. The babs, bart and lyme are still with me but fixing other things has really helped. I am living life and able to do things I have not done in a very long time.
I stated seeing an alternative doc in Washington, DC in June 05. He picked up on things that no other doc including my LLMD ever thought of like digestive problems, hormones, minerals off, congested organs... and ofcourse mercury, lead and other toxins...
My adrenel fatigue was so bad the first time I walked into his office that someone would have thought I was a drunk. My previous doc never had me walk a straight line or tested my reflexes...
I had my amalgams removed, tonsils removed. I have done a few chelation treatments which has also helped along with the chlorella and cilantro. My minerals are now in balance... Next step is cavations.
Two years ago I thought all this alternative stuff was a load of crap. I thought Gigi had fallen off the deep end (no offense Gigi).
Well I have to say I was totally wrong and alternative (art testing) has really helped me. Thank you Gigi for your numerous posts and help.
My family even notices the difference in me and because of my experience are more open minded to alternative medicine.
Never thought I would see the day that my husband would want his amalgams removed or be interested in electro-magnetic fields...
I still have a long way to go but feel I have chosen the right path. Thanks to all of you who answered my emails and spoke to me on the phone last year when I was trying to find my way. I will be forever greatful to all of you especially Gigi and Julia.
[ 23. February 2006, 05:25 PM: Message edited by: bel1268 ]
Posts: 240 | From Southern Maryland | Registered: Jun 2003
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JimBoB
Unregistered
posted
Thanks bel:
I think that too was my problem. I am just going to keep on the herbs for now and the forseeable future and see how it all goes.
I liked the positive feeling I got right away with the herbs when I started taking them back on November 25th. I felt so much better and little or NO herxing either, which was nice.
Hopefully I will keep seeing improvements all the time. Then IF I do, I will start cutting back from the herbs, slowly; and see how it goes. I may just always stay on a low dose of SOME of them. Since most are so cheap now that I encapsulate them myself.
I am working on this tooth thing too. I go in on March 22nd to get another silver filling out and tooth redone with the composite.
And like i told my Dentist, absolutely NO root canals. IF I need one, just pull it.
CAVE76: I am wondering WHY you are thinking O2babe, since SHE has NOT posted on this thread?
Take care all, and many thanks again for all the info and caring. You guys/gals are super.
posted
I was sick for about 10 years before diagnosis. Was treated aggressively for 5 years but never IV. For many years every time I tried to stop abx I relapsed, so I always went back on and treated to resolution of symptoms only to relapse yet again. But there came a time when I stopped and did not relapse --that was almost two years ago, and I am still without symptoms. I am on no medication not even herbs. I think that we can get well, but it does take some time, and of course, strategic treatment.
Posts: 8 | From CT | Registered: Feb 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I have had diagnosed lyme and bullseye rash since 1991.
No ABX for 13 of these past 15 years.
Mostly faired WELL without ABX. Treated 2 weeks tetracycline after catching the lyme "early" 2 months after bite.
Complete return to health (college, smoking pot, partying, traveled the world for a few years, started a career) and NO ABX for 10 years.
HOWEVER--I am on on them FULL TIME NOW. (ABX not grass) I keep relapsing after no ABX for a few years---but it takes YEARS to wear my body down to relapse for me.
Each relapse is MUCH worse than the last. Much more pain and nuero problems each time.
Dont know how long this ABX run will last, but this time I truly believe that slow and steady wins THIS race.
Jimbob--when I go off ABX for short term--like 2-10 months, everything is AWSOME. It is in month 12-34 that things start to get worse.
Best to everyone! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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JimBoB
Unregistered
posted
Azure Wish:
Do you take HERBS too? THAT makes a BIG difference. Actually I felt MUCH better when I was on herbs only.
But I got so down from the abx that it is probably going to take a while now to get back to where I was.
My head is feeling really weird again tonight.
The herbs are NOT new for me now. They were what I started with back in November.
You did NOT mention if you have been on a good herb regimen during your time off of the abx.
Are you?
The herbs will build your system up, IF you do it right.
I was on Cipro, 5 months after I got my Lyme back in October of 1999. ( Took the Cipro in March of 2000). And was GOOD for about 8 months or so, but then slowly it came back and got really bad this past fall. Till I finally felt like I was going to die IF I didn't do something about it.
THAT was when I started the Herb protocol found in Stephen Buhner's Healing Lyme book.
And I was doing good, until I took the abx the past couple of months.
Was treated aggressively for 5 years but never IV.
For many years every time I tried to stop abx, I relapsed, so I always went back on and treated to resolution of symptoms only to relapse yet again.
But there came a time when I stopped and did not relapse --that was almost two years ago, and I am still without symptoms.
I am on no medication not even herbs. I think that we can get well, but it does take some time, and of course, strategic treatment.
Wortman, welcome, and thank you for sharing your SUCCESS story with us all, and for stopping by to give us H O P E!
Wman, I broke up your long, continuous post since I'm one of many neuro lymies here who have to have short paragraphs of 6-8 lines of text and DOUBLE space. I can't read/comprehend as is.
Hopefully you will post some more, and just please use the enter button moe often.
Wman, there is a SUCCESS STORY post, and it would be great if you copied my cut-up version of it to that thread.
You can find it in TREEPATROL'S NEWBIE LINKS and read thru the 10 pages plus he has. Come again.
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
No I havent followed any protocols for herbs. I have taken various herbs over the years, but I never seem to keep up with it or see any results.
I prolly dont keep up with it coz I dont see results and visa versa.
Suppliments have been more easily identifiable as being helpful to my over all energy level and health.
I think I have a different opinion about herbs than many people here.
I believe in reducing the germ load via ABX and helping your body fight the rest with immune enhancing suppliments (vitamins and minerals)-- not particularly herbs.
But I also know and understand that this disease has many different forms and therefor many different pathways to health.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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JimBoB
Unregistered
posted
Yes, Trails, you will NOT see positive results IF you do NOT keep up a regimen FAITHFULLY.
BUT IF you DO, you definitely WILL see good results. MANY on this list have that I have spoken to.
As have I. I will keep on them, along with the important supplements of Vitamin C in the form of C-Salts, and Vitamin E. I am also considering adding Vitamin A as I have heard IT is good also for the "cure".
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I keep relapsing after no ABX for a few years---but it takes YEARS to wear my body down to relapse for me.
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