posted
I was posting about my treatment history on a Facebook group for people with Lyme disease and I was posting about how I had not gotten better despite being on five years of antibiotics, herbs, ozone, rife , and bee venom.
People were trying to offer suggestions as to reasons why I had no response to any of these treatments and a few people said that unless I had a doctor that was using three antibiotics at a time to treat I would not have gotten better. I had never heard of this, and was wondering if doctors were just finding this to be true.
The most antibiotics I had been at at one time were when I had a picc line . I was on rocephin, rifampin, doxy and plaquenil. That was for three months. I did not notice a difference. I know at some point most people would give up by now and throw in the towel, and the quality of my life is getting so reduced despite trying so many treatments that I am getting to that point.
I know that people are trying to be helpful but I also don’t think it’s right to be given false hope either. I know there are some people who are very sick and doctors are never able to find out what’s wrong with them. Maybe I just need to accept that that is what is happening to me.
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
No I didn’t. I had a blood test that showed my gamma globulins were high but the doctor had no idea what was causing it.
Posts: 723 | From boston,ma | Registered: Jan 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
katrinab
Please don't give up ! You are so worth fighting for ! I don't believe people are giving you false hope, Lyme sufferers know pain, frustration, despair, and disrespectful behavior from medical providers. So we wish to lessen the burden for others in any way we can.
When people mention the 3 or more antibiotic regimen, they are referring to most recognized protocol, written by a MD who cured himself and many others of this horrific disease ;
Also, lots of advice here on Lymenet from VERY knowledgable Lyme survivors. They saved my life and many, many others.
P.S. My LLMD offered me up this advice and I started getting better daily. Cover your bed matteress and box-spring with cloth (not plastic) matteress covering. Wash weekly.
Hang in there. We are here for you. Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I'm sorry you've tried so many things, and haven't found anything that helps.
It sounds like you are saying you want to stop treatment.
I think it a question of if you feel worse not treating or not. Also if all the things you've done haven't helped much at all, maybe you are missing something that you need to address.
I'm really not sure. What I'm finding, is that for me at least, small changes can make big differences.
Staying out of moldy buildings really seems to help, and I was amazed how much better I felt after buying some new shoes, my old ones were really bad for my feet. Changing my diet has helped also. And I also have a problem with dust. If my bedding is dusty, I will feel horrible.
I hope you start to feel better soon. There just seems to be no rhyme or reason sometimes why some people get better and some don't. But I know there is a way to get through this.
-------------------- 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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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I agree with all posts above...
Somehow, lyme is a sort of layer-disease (like all chronic diseases).
You take off one bad layer that stresses your body, you MAY feel a bit better.
Sometimes, the body has so many stress layers, that taking off one layer won't feel better, but you'll need to take 5-10 layers off to start feeling improvement.
It feels like all the work to take one layer off does not pay back, then, but in fact, it is doing something to you, positively.
so when you say: 'well, I did that / took that and finally healed' does not mean that that LAST LAYER was the ONLY responsible for healing your chronic disease.
Many people change diets, add supplements, vitamins, herbs, teas, essential oils... Then do teeth work, jaw cleaning, chiro and acupuncture, meditation, earthing, use many devices here and there, ...
do parasite cleanse, treat candida, mold, etc.
And finally do a last thing (like adding loads of Vit D3, or taking 3 antibiotics at once, or doing the photon treatment, or doing a psycho- treatment) and they suddenly feel much better.
I still believe that one treatment can heal some chronic diseases for some lucky guys. But usually, that's not the case.
For some people, infections are a big layer, and for some of them, antibiotics work. For others, they do not work. Or infections are not their main problem - but lack of body ability to detox.
I hope you find your layers and get better soon.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Kat!
Good to see you. Sorry you are having problems still. Just last night I wrote down something I heard (must have been for you) and will get it later and come back.
It was just a thought, not a treatment or cure, but it made sense and if people could think in these terms it might be helpful.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am not saying this word for word because I just jotted a note down about it, however, it goes something like this....
``````````````````` For people with chronic illnesses frustration and hopelessness sets in when trying to live in an empty version of your old self.
You need to discover who you are now and accept the new version before you can become happy and move on.
```````````````````
Actually, that is quite off the original wording, but what the hay? It's my interpretation of it and it feels right to me.
Now, as for what "the people said" about having to have a doctor to prescribe 3 antibiotics at one time in order to get well...
Hogwash! Double hogwash! And you can tell them I said so!
Some people will get well if they take Zithromax for 5 days, some won't. Some will get well if they take 5 antibitocis at one time, some won't.
Some will get well if they eat ice cream 4 days a week and take doxy for 6 months, but I sure didn't.
Some people, even with the best and most sincere attempts to get well will only get 10% better. Some will get 50% better, some 75% better.
Some won't get any better and will have to focus on trying to adapt while not getting any worse.
Maybe compare it to being diabetic. There are many ways to treat the condition, and some do well on one protocol, others have no response or get worse.
Each of us is so very different and our load of tick borne organisms, history, environment, etc. is so different that there will never be a one-size-fits-all treatment.
So.... please re-read my words above and be inspired. One thing we can't do here is give up! If any of us give up now, what's the use? We survived the hardest part only to quit?
NO NO NO! Climb back up on that horse and keep moving forward.
quote:Originally posted by katrinab: I was posting about my treatment history on a Facebook group for people with Lyme disease and I was posting about how I had not gotten better despite being on five years of antibiotics, herbs, ozone, rife , and bee venom.
People were trying to offer suggestions as to reasons why I had no response to any of these treatments and a few people said that unless I had a doctor that was using three antibiotics at a time to treat I would not have gotten better. I had never heard of this, and was wondering if doctors were just finding this to be true.
A lot of Dr. H's patients that have failed triple antibiotic protocols, made a lot of progress with the new persister cell antbiotics+stevia.
What we know now about Chronic Lyme, is that persister cells and biofilms are the reason why the disease is so hard to kill, through the recent John Hopkins study. I'm sure coinfections fit in there too with some patients, but unless you target the persister cells and biofilms with the right drugs, the infection will keep coming back.
quote:Originally posted by katrinab: The most antibiotics I had been at at one time were when I had a picc line . I was on rocephin, rifampin, doxy and plaquenil. That was for three months. I did not notice a difference. I know at some point most people would give up by now and throw in the towel, and the quality of my life is getting so reduced despite trying so many treatments that I am getting to that point.
For me plaquenil, rifampin did nothing... Until I tried dapsone and pyrazinamide! I don't think any of the antibiotics you mentioned target persister cells in the recent John Hopkins study, there were only 23 drug candidates that killed off persister cells.
The point is, it's very very very obvious that we as lyme patients, are very limited to a specific amount of antibiotics that'll treat biofilms and persister cells.
I stopped relapsing when I got on disulfiram, a new drug that's quite effective against persister cells.
I recommend researching the recent drugs Dr. H and Dr. J are using in modern day, not old antibiotics protocols, good luck...
Posts: 108 | From Germany | Registered: Jul 2017
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
If you've been stuck in the same place for quite some time then you might want to seriously consider seeking a fresh perspective. You might just need that extra set of eyes.
Posts: 5237 | From here | Registered: Nov 2007
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