Topic: Has Anyone Stopped Treatment To Access Progress
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Has anyone stopped their treatment protocol, without the permission of their LLMD, to access their body's functions ?
I am at 1 full year of treatment. Was at 75% maybe 3 or 4 days a week. Currently not in good place due to spinal cord pain and a change in meds.
But with Lyme causing so much damage, inflammation, autoimmune, hormonal, allergies, ect,
How does one know where Lyme stops ? And the symptoms become just the damage ?
If I am suppose to continue treatment until all the symptoms stop, I m afraid that could, in all reality, be infinity.
I think there will always be residual damage to learn to live with. How does one know it's the bacteria still causing damage or the damage itself ?
I was wondering if I could stop all meds to get a base-line reading of what my body would feel like. Yet, I m scared I ll get even sicker and jepardize ever getting better.
Thoughts. . .
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I stopped and it was the best decision I ever made. I had treated lyme and babs hard and was in month 4 of bartonella treatment. It was awful. I was bed bound, crying constantly, etc. So I stopped.
It took about 3 weeks for to completely detox my body. I felt better. It was then I started treated with the byron white formulas and got better. Looking back, I was so overloaded with toxins.
My llmd supported me as she knew how badly I was struggling. It was the right decision for me.
Posts: 88 | From new england | Registered: Oct 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Awesome ilovedogs. π π π
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Bonnie- I feel like I am the same as you. I could have written this post. Am at about 75-80% and just don't seem to get past that point.
I just started one week on of meds and one week off (I was not feeling well due to stomach bug) and found that after 4 days I feel great, but the joint aches and pains return.
So I don't think I am at the point in which I can stop, but I sure would like to, the meds are starting to make me feel sick.
Ilovedogs- how long did you treat? I treated babs for 6 months with mepron (currently doing art with my protocol) and I feel like the babs is back.
Posts: 74 | From over here | Registered: Mar 2017
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posted
I stopped antibiotics after 3 months. I was starting to feel much worse instead of better. I don't consider myself as having stopped treatment though, because I am still taking a bunch of herbs.
I did stop treatment completely for about two years after more than two years on something that made me really sick. I thought that I was better and it was the treatment making me sick. I thought that after 2 years I should have been better. But even though I felt better, all my symptoms came back in a year. I think anyone on a treatment that is making them really sick should stop and change doctors. I don't think not treating the Lyme at all is good idea either though. The longer I did nothing, the worse I felt.
Stopping a treatment for a little while to see how you feel might be a good idea. Lyme is supposed to replicate very slowly... So maybe it wouldn't hurt. I really don't know.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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posted
You can do that through pulsing. I have developed a pulsing protocol that has checks for that. One good thing about pulsing is you get breaks from the meds.
Posts: 360 | From Massachusetts | Registered: Dec 2012
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posted
Four days on three days off? I don't think is likely four days can get penetration to all areas of the body and three days off is not enough time to allow persistent cells to sense low levels (it takes awhile for the antibiotics to leave the body) of antibiotics and start to start growing again. I'd like to know what their rationale is for that program.
Posts: 360 | From Massachusetts | Registered: Dec 2012
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posted
I'm just simply weaning off. I would have to ask the science behind why this method was chosen.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
Yes, stopping for a short time can tell you a lot and give you some time to detox.
My LLMD had me get off meds for a short time. I was instructed to stop for, I think it was a couple weeks, but if I had babesia symptoms come back, I was to start back on the babesia meds. He said it takes time for borrelia to worsen, but babesia can flare up right away.
I ended up feeling bad within two days and starting the babesia meds.
I felt so bad we just didn't know whether it was the disease or the medications.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I went off two weeks ago for a week and started feeling joint pain around day 4-5. So I went back on, but now after a week I just feel ill from the medicine.
The first 7 months of treatment the medicine never bothered me. Now if I go off it, like outpatient surgery, I feel very ill after a week of being on it.
I am wondering if my body has just had enough of the meds. Or is this just as good as it gets for me in my progression.
I am completely functional with just minor joint pain and eye sensitivity at times. It is just so hard to figure out when is a good time to stop and see what happens.
I am treating with art too after 5 months of mepron, and I have no reaction to that, no herx, nothing. So not sure if my babs is gone.
You said, "I felt so bad we just didn't know whether it was the disease or the medications." So looking back, was it the disease or the meds? Do you know?
Thank you Posts: 74 | From over here | Registered: Mar 2017
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posted
I've heard if an antibiotic doesn't give you any type of reaction, then it's probably not killing the bugs.
I would say if your treatment is making you fell really terrible all the time you should probably switch to a treatment that you can tolerate. I've gotten really sick from treatments one time too many.
My opinion is, if it feels like it's bad for you (after you've tried it for a while) it probably is. It can be tricky though because if you are just on anti-inflammatory treatments (not antibiotics) you can be covering up your symptoms.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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posted
Looking back, I think it was both. When I got off meds to go to Germany, my health tanked. I wondered how I would get there and I spent a few days in bed resting from the trip. Clearly, that was the disease, not the meds. At that same time I got rid of a mattress that had mold in it, so some of that crash could have been mold detox.
So the meds, on the one hand, would make me feel "better" but they also made me feel worse. My first couple days off them were always good.
I liked the photon treatment better because the light only gave me energy, it didn't make me feel bad. It was intense in a different way that's hard to explain. I did feel the treatment and the die-off, but I didn't continually feel bad like I did on medication.
There's no easy answer with Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by Lyme248: It can be tricky though because if you are just on anti-inflammatory treatments (not antibiotics) you can be covering up your symptoms.
What further complicates things is that the antibiotics themselves can be anti-inflammatory. So is it the bacterial killing effect or the lower inflammation that's helping?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I am on antibiotics, but also taking things that help with the inflammation. I was fine on all my antibiotics until this past month.
I didn't change anything in my protocol, or medicines, but all of a sudden taking them just made me feel physically ill.
It really caught me off guard because I have been always able to tolerate and take the medicines okay. Rifampin was the other thing that gave me problems and I only lasted 5 weeks on that.
And the no reaction to the art just made me wonder if I didn't have the babs coming back like I thought I did.
Posts: 74 | From over here | Registered: Mar 2017
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Sufferring all week from nasty flu. Gastro and upper respiratory.
Had to cancel LLMD appointment. 1st time I had to do that.
Stopped all meds.
Recieved my IVIG treatment yesterday. Nurse asked me 3 times if I wanted to stop, I said no way. After infusion, I took a 2 hour nap and awoke feeling better with energy.
Taking the flu off the table, I have to think more is going on other than Lyme, at this point.
My body needs to heal. I think inflammatory storms are the cause of all my recent relapses and flairs. Therefore, I think it's logical to start protocol that addresses INFLAMATION only.
posted
"Has anyone stopped their treatment protocol, without the permission of their LLMD, to access their body's functions ?"
Absolutely! I initially was treated by a Lyme friendly MD for 15 months, only with a single agent at a time.
I then found an LLMD who treated more along Burrascano guidelines. I was given what I would consider a fairly aggressive protocol. I stopped after 8 months. I wanted to rest my gut.
I saw my LLMD about two weeks after this who was in agreement. He did want me to take Samento and Banderol though. That was in 2013 and in total I treated for two solid years before stopping.
I really haven't looked back. I'm not going to lie, it takes a lot of time to recover, at least another year to feel some improvement. Then even that bit of improvement starts to strengthen.
I have treated when I felt I may be relapsing or sliding, or even prophylactically when I am up against something. Those stretches in between grow longer and longer and the time I am on ABX grows shorter and shorter.
I continue to learn of new methods to help control this. I continue with dietary and lifestyle measures. It took four years after initially stopping for one lingering symptom to go away...but it did happen!
Posts: 478 | From Third Coast | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Strategy for time off and then how to assertively hit at the right time with pulsing:
See all THREE posts here by Pamela Weintraub (who is a LL journalist who recovered from lyme - and write about her entire family dealing with it in "Cure Unknown" book )
Pamela Weintraub links -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
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Thank you so much everyone. Posts: 2977 | From Florida | Registered: Nov 2016
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Rumigirl
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Member # 15091
posted
BTW, the pulsing that Pam Weintraub and Dr. B talk about are for Lyme, not for co-infections, and only after 2 months of no symptoms.
However, needing to stop abx for the reasons you state is not unusual. It's a bumpy road, as you know.
During whatever time you spend off abx, as you said, you can address other issues, of which we all have many.
Posts: 3771 | From around | Registered: Mar 2008
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dbpei
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Member # 33574
posted
After 6 years of treatment (ABX with herbs in between), including recent period of over a year with very aggressive treatment of IV ABX (rocephin, flagyl, and eventually clindamycin), IVIG and multiple oral ABX, I made the decision to go cold turkey after getting my picc line removed.
I was headed for a long awaited vacation by the sea - and I hoped that when I got my picc line removed, my LLNP would allow me to take a break. Instead, she wanted me to stay on all of my oral ABX and add Alinia to the mix. With the support of my more holistic LLMD, I made the decision to stop all of the ABX.
But I had always wondered if parasites might be in the picture, so decided to give the Alinia a try. It took a few weeks to get the Alinia from a compounding pharmacy, so this gave me a chance to see how I did without all of the ABX.
During this time, I was feeling the best I had felt in years. I wondered if some of my symptoms had actually been side effects of the ABX I had been on (minocycline causes head pressure, increased tinnitus and more).
After starting the Alinia, I noticed that some of my neuro symptoms were gradually returning and worsening. I decided to stop the Alinia after about 6 weeks and return to Beyond Balance herbs, that my more holistic LLMD prescribed for me. I also made the decision to stop tx. with the LLNP who uses aggressive ABX in her protocols.
Since that time, I am holding my own - still feeling much better than I did while on aggressive ABX tx. I am also being treated with detox protocol for past mold exposure. So with that come some bad days in between the good ones.
My instincts are telling me it is time to let my body's immune system work for me again with the support of a better detox program. I wish I was at 90% but it sure feels good to be where I am now (80%) compared to where I was last year at this time.
The biggest change I see is my energy level since off the ABX. It is so much better. I can cook and do housework without it exhausting me and setting me back like it used to.
Unfortunately, I am afraid I may need to address a sinus cyst and/or possible dental cavitations - and if I do, I am hoping that my immune system will be better equipped to handle this.
I am not afraid to take ABX if there is a need, either. I just don't want to be on them, long term or aggressively, unless absolutely necessary. But I don't regret the last year. I think it may be something I had to do to get to this place I am at now.
Bartenderbonnie, that is a great article! I wish you the best in your decision and my advice would be to listen to your gut.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I also wanted to add that measuring your CD-57 can be useful in deciding if you can stop ABX.
Mine got down to 19. I quit ABX when it was about 62. My MD really preferred it to be 120 and above to stop. It's been holding steady at 45 the last few years. This makes me a little uneasy but at least I know what I'm up against.
They also like to do the Tindamax or Flagyl challenge. I think after four months off ABX you will do a course of one of these drugs. If you don't herx you can continue to stay off ABX.
Posts: 478 | From Third Coast | Registered: Feb 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
dbpei - thank you so much for sharing. We learn so much from each other. What a long journey you have been on. You are a true Lyme warrior, you keep the rest of us fighting for wellness.π koo, I have been pulsing flagyl on weekends for 1 year. No noticeable reactions.
Also, I can't help the correlation of timing of my flu. I got my teeth cleaned on Friday. Dental hygienist sneezed once in her hands and twice at her computer. I pulled the neck of my sweater up so I could breathe. She did put on gloves and face mask while working on me.
5am Sunday morning awoke to projectile vomiting. Then coming out other end. Maybe teeth cleaning released storm of germs in whole body ? The sneeze ? Very sick for 7 days.
Posts: 2977 | From Florida | Registered: Nov 2016
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Thank you so much for those kind words, BB. I am sorry you are so sick right now. Your visit to the dental hygienist is likely how you got sick. GI bugs are the worst.
I hope you feel better soon! Posts: 2386 | From New England | Registered: Aug 2011
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