CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I wish my LLMDs had impressed upon me that in beginning abx treatment I was consenting to undergo chemo. I am disgusted also that the worse I got, the more abx they gave me....more orals, more combos, even IV.
Now years later I am seeking alternative methods of wellness and can only hope that I can get back to where I was before I split off. The antibiotics not only didn't work (well, they did mostly for Lyme) they didn't kill the coinfections because those are worse than ever.
Makes no sense to me scientifically at all.
It seems like now, if you are beginning your Lyme journey, there are more things to try that work, some of them in other countries that I wish I had known about a long time ago. But when I started in 2007, it was hard core abx all the way, with some herbals thrown in for fun.
The group of people that I started treatment with all seemed to get well on the hardcore regimens, which is extra puzzling. So I thought I had to keep up with them. I didn't listen to my own body at all, and neither did my docs.
Take control of your own destiny, people. That means don't think your LLMD knows everything, I put all my trust in mine and regret this deeply.
Posts: 3528 | From US | Registered: Apr 2007
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
quote:Originally posted by CD57: I wish my LLMDs had impressed upon me that in beginning abx treatment I was consenting to undergo chemo. I am disgusted also that the worse I got, the more abx they gave me....more orals, more combos, even IV.
Now years later I am seeking alternative methods of wellness and can only hope that I can get back to where I was before I split off. The antibiotics not only didn't work (well, they did mostly for Lyme) they didn't kill the coinfections because those are worse than ever.
Makes no sense to me scientifically at all.
It seems like now, if you are beginning your Lyme journey, there are more things to try that work, some of them in other countries that I wish I had known about a long time ago. But when I started in 2007, it was hard core abx all the way, with some herbals thrown in for fun.
The group of people that I started treatment with all seemed to get well on the hardcore regimens, which is extra puzzling. So I thought I had to keep up with them. I didn't listen to my own body at all, and neither did my docs.
Take control of your own destiny, people. That means don't think your LLMD knows everything, I put all my trust in mine and regret this deeply.
I agree! I think people need to be better informed of the consequences of long term antibiotics. After a year of treatment I made the decision to move on.
Posts: 1748 | From United States | Registered: Dec 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
This is why carbon-copy, 1-size-fits-all treatment for Lyme will always fail... No two human bodies are alike, and thus no 2 cases of Lyme are identical. Thus, there is no guaranteed, this-will-work-for-everyone approach for Lyme.
Any doctor who practices Lyme treatment with a one-size-fits-all approach is not a true LLMD, in my opinion.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
CD57, are you gluten free, special diet, or had a stool test ever to check your gut health?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Gluten free 2 months now. Still haven't gotten dairy out. No sugar. Stool tests show yeast and klebsiella. Doc doesn't know what to do w that. Any ideas?
Posts: 3528 | From US | Registered: Apr 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Well, unfortunately Metamatrix company merged with another, and now they don't give you the DNA portion of the stool test,
which gave a list of natural herbs (and medications) that the stomach infections are susceptible to-
Not sure where you're at as far as continuing antibiotics currently, but know you started parasites and yeast treating- this last bit for me of gut health is ongoing.
Here is some info. on klebsiella I found:
'Klebsiella pneumoniae is also a gram negative, anaerobic, rod shaped bacteria. It can ferment dairy foods and it likes sugar as a food source. It is commonly found in the intestine, mouth and skin. The most common infection it causes is pneumonia.'
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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quote:Originally posted by CD57: Gluten free 2 months now. Still haven't gotten dairy out. No sugar. Stool tests show yeast and klebsiella. Doc doesn't know what to do w that. Any ideas?
I did a few rounds of Humaworm for the klebsiella and other parasites. Then I made various fermented foods at home for over a year to rebuild gut health.
I also did a Dr. Natura cleanse as directed. I do a yearly Dr. Natura cleanse now for maintenance.
I didn't get any benefit from cutting out dairy, but I did try it for 6 months. I still eat gluten free (and most other grains except a little corn). I eat very little sugar, but I don't really have to worry about it when I do. My daughter is in culinary school and makes raw vegan cakes for me that are gluten free and sweetened with honey if they need any additional sweetener at all (I am not vegan, but love raw vegan stuff because it's so good and healthy). I am back to "normal" now health-wise, but I eat fanatically because I feel better eating this way than the standard American diet.
I, too, found that after some time on abx that it was time to move on. I got to a place where I was just managing my drugs and no longer seeing any improvment, but maybe some backsliding.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I'm all for a healthy diet!! After abx your gut has nothing left! It's "wasted!"
I agree with eating your homemade cultured vegetables and watching your diet. Try to get that dairy out, even if it's for only a few months. See if it helps.
After what surprise posted, I sure would concentrate on that!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
When I look back at my treatment of all the infections, it was only abx that moved me forward but I could never tolerate them long term. I had to take a lot of breaks, sometimes for months, to detox.
Rifampin was sending me over the cliff so I had to quit it. Surprisingly I noticed my mental state was better but my symptoms shifted to body pain. As things worsened, in spite of the herbs, I decided to give bactrim another go. In just 3 days, only taking it in the morning, the symptoms I had are pretty much gone.
I think some of us just need to take a lot of breaks to detox. I also have PR and can't remember if you have addressed that or heavy metals.
That was critical for my recovery. LipoPhos EDTA does both -
If you think you might have PR, then try the low fat diet. I use fat binders and it is really helpful. I can keep the PR under control, hardly ever using ivermectin, with just the LipoPhos EDTA and fat binders.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
If you just want to go the herbal route, then study liposomes and learn how to turn your tinctures into them. It makes them MUCH more effective. Dr. K has his patients making all of his cocktails into liposomes.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
The ***strong antimicrobial*** activities of extracts from Rhizoma coptidis and Radix scutellariae,
two important ***sources of berberine*** in nature,
have been firmly established
by inhibiting the growth of ***Klebsiella pneumonia***,
Proteus vulgaris,
Mycobacterium ******tis,
Candida albicans [6],
Heliobacter pylori [7],
and the intestinal protozoan parasite Blastocystis hominis
9-lauroylberberrubine ***chloride*** was the most active against Gram-positive bacteria Enterococcus faecalis, Staphylococcus aureus, Staphylococcus epidermidis, Micrococcus luteus, Bacillus subtilis as well as the Gram-negative bacterium Klebsiella pneumoniae
in comparison to berberine, the currently used antibiotic in clinic.
This result suggested that
the presence of lipophilic substituents of
certain structures and sizes
might be crucial for the optimal antimicrobial activity.
PMID: 10865456
The citations of the effect of berberine on Tops activity in some earlier publications were misleading to some extent, as these researchers did not make a distinction between
Review time...it appears berberine is metabolized to berberrubine which interacts with HP14, a substrate of RNA involved in RNA folding.
Do you know it is the metabolite of Tamoxifen that is the working component?
Tamoxifen is an antagonist of the estrogen receptor in breast tissue
via its active metabolite,
4-hydroxytamoxifen.
Wiki.
Not the first time a metabolite is more potent (if singled out) and is actually the working factor of a "larger" "chemical".
It appears the *chloride form* of berberine is the best form!
[ 04-26-2014, 03:42 PM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Marnie not sure I understand. I'm less interested in a klebsiella killer and more interested in a bartonella one. Natural and powerful.
Interesting Neff. What happened with the Rifsmpin, over the edge? It does that to me too but nothing else seems to touch it. It almost killed me before. Same thing happened re everything moving into the body....what does that mean?
I know a lot more about detoxing now than I used to, but it seems as though these treatments have just shut down my immune system. I can drink bottles of stuff and take supps that put others on the floor. Antibiotics and herbs BWF Cowden don't seem to do much either, except hh2 made me extremely toxic. Toxic for me is mostly brain related, I know the signs well enough now.
So now I am trying some antiparasitic herbs and metals treatment. In the meantime the Bart seems to be progressing. If that's what it is. I'm afraid I will soon be in a wheelchair, completely crazy. It is frightening.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Funny thing I have never taken steroids or done anything to my system other than take these toxic drugs. I wish I had gone slower and my docs had paid more attention. I was truly of the go hard or go home camp...now I am paying for it.
Hoping my system will come back online with lots of detox and another therapy I'm doing. . I notice that Most people now who seem to have gotten well have done it by not focusing on killing.
Posts: 3528 | From US | Registered: Apr 2007
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quote:Originally posted by CD57: Hoping my system will come back online with lots of detox and another therapy I'm doing. . I notice that Most people now who seem to have gotten well have done it by not focusing on killing.
It will. But don't go overboard with it either! GO SLOWLY!!! The detox and rebuilding health takes TIME and lots of it!
I still focus on rebuilding health because I feel it takes as long to rebuild the body as it did to get really sick and fight the illness. I'm almost 5 years out since beating Lyme and I live a normal life, healthier than most my age, but I still work on detox and getting even healthier.
Not as often as I used to and not as hard as I used to .... but I still will once in a while hit a layer of some kind of toxin/bacteria/whatever that still needs healing (maybe once a year). It's not enough to knock me down, but it seems the layers are endless.
Now that you've changed your paradigm to focusing on health, take it slowly. No need to be a hero with detox any more than being a hero with hammering the body with abx.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Thank you six. I'm so glad you are around here. I remember being in treatment same time as you and you seemed to get better and I didn't. I kept thinking it was the next abx combo around the corner that would do it.
And it didn't.
I sure hope the body can regenerate. And that something will help me.
Posts: 3528 | From US | Registered: Apr 2007
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quote:Originally posted by CD57: Thank you six. I'm so glad you are around here. I remember being in treatment same time as you and you seemed to get better and I didn't. I kept thinking it was the next abx combo around the corner that would do it.
And it didn't.
I sure hope the body can regenerate. And that something will help me.
Me, too. Once I saw that abx only got me to a certain point and that some combinations made me relatively functional but others made me bedridden, I dropped that treatment for alternative like you are doing now.
It takes time, but the body is amazing. Just give it the support it needs! And rebuild what it has lost (minerals, strength, good bacteria, etc.).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I wonder how much "fast metabolism" versus "slow metabolism" is playing a part.
Example: my son and I can only take low doses of supplements and drugs.
My husband can take significantly higher doses.
I think my son and I are "fast metabolizers" and the supps/drugs hit us full force too fast.
Which maybe why some of you have to go slower, take lower doses than others.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Might be, Marnie. I would say I have a faster metabolism than most people.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
That is very advanced medicine, trying to figure who is metabolzing at what rate, etc.
One thing is clear: the LLMDs are learning also.
Six I like that "Now that you've changed your paradigm to focusing on health" and REBUILDING
Posts: 3528 | From US | Registered: Apr 2007
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