bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi folks:
I’ve been treating lyme and co since first becoming ill in 2010. So it has now been about 7 years and 2 months.
I’m better off than most. I went from nearly bedbound in 2010 after 4 months of misdiagnosis, to 90+% in only 3-4 months treatment. But I’ve never been able to get to a full 100% remission, although I’ve had years at 95% or so before backsliding in late 2015 and crawling my way back to 90% in early 2017.
Along the way I’ve changed LLMD’s several times. I went from my first LLMD in MA (Dr. H) who saved my life to the famous Dr. H in NY who treated very aggressively to my now LLMD Dr. M in CT. (who also is well known nationally and gives lectures etc.) I did a lot of work last year with a good Applied Kinesiologist in NYC who helped me crawl back from my relapse in late 2015.
Anyway, as someone whose been in this for now 7+ years, it seems to me that this illness is getting more difficult to treat. There seems to be fewer and fewer success stories that you used to see in years past. Examples are TF, Sixgoofykids, etc.
I’m not sure if this is because there is less activity on Lymenet now versus years past (presumably due to more communities on Facebook etc where people are posting), or if it is because the bugs are evolving, new germs are now involved, and previous treatments are less effective.
I’ve read how people like TF have gotten well. I’ve done those same Dr. B protocols with famous LLMD’s. They definitely helped but didn’t get me all the way well. It seems the bugs are getting resistant to those treatments, babesia in particular. There seem to be newer, unidentified pathogens like protomyxzoa that are causing problems.
To me, it seems abx alone are no longer working. You now need an integrated approach of abx, herbs, nutrition, energy testing, etc. These are the success stories as of late. Doctors like Dr. C in PA or Dr. K in WA take this approach. Also stories of folks getting well after decades by doing herbs and diet and parasite TX like on www.realfoodrebel.com
Anyway, these are just my observations.
What do you all think? Do you think the bugs and changed and previously effective treatments are no longer as effective? Thoughts?
As for me, I'm doing better than most. 90% most days but still have nuisance symptoms I'm trying to clear. Tinnitus, twitching, occasional fogginess which is now mostly gone, thankfully. My journey continues....
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Are you exercising? The common denominator with TF and me is exercise.
It must go along with what Dr. B's guidelines say. I do not think I would be well today if I hadn't exercised. I feel that it is the piece that got me from a shaky remission to being fully well.
I have continued to exercise since I've been well. I chose Pilates because it is full body incorporating strength work using springs for resistance.
I don't believe any protocol can get you all the way to wellness without exercise. Full body. Three times per week. Strength training.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I have mostly exercised, but it comes in peaks and valleys. But I have done the Dr. B weightlifting for months, particularly when I was treating with the famous Dr. H on Dr. B protocols.
It hasn't made a difference for me.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
You might not feel a difference when you're doing it because exercise brings more blood and oxygen to your tissue which kills bacteria. So, you could even feel worse from exercise.
I didn't get nearly the results from weightlifting as I did from Pilates (on equipment, not mat classes). PIlates reached a deeper level for me. That could be because I was doing weightlifting on my own. I think trainers include more whole body work.
Keep up with it even if you don't feel a difference. I think it's the key piece most people are missing.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
When I stopped treatment, I was not 100%. I think sometimes we have to learn to live with what is.
Part of my issue was the MCAS .. so hopefully you have explored that one as well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
In my opinion, it is possible, but from 90% onwards, the treatment will be EXTREMELY individual.
I would do muscle tests, or energy testing.
These last 5-10% are FOR SURE the hardest, because they are the oldest problems (I mean, the most stubborn problems that are RESISTANT to most treatments).
It's a bit like trying to find a code of a safe, that's got 10 digits: you got to hit the 10 digits to get off, or the safe won't open.
Even if you find the 9 digits, and miss the 10th, you'll remain with some symptoms.
If you are open to energy testing, that is where I think, you should now head into. Someone doing such tests that are very open minded, and that go through the whole body: meaning: body + spirit + meridians + psychoblockades + heavy metal toxicity + teeth treatments, etc.
It's only by pinpointing all the 10 digits that one can get off to 100%. I can't see how this can be done IN A LIFETIME of 80 years old, just by trial and error.
Some people though are lucky, or have a good intuition and will find out what fits them best.
I do think it's possible, but it requires a very open mind.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
May I offer this latest info from Dr. H? And don't know if you tried Dr. B's Vanco protocol, but it is used for the toughest cases.
posted
I think it's a matter of individually exploring what we respond to, and the more remedies we find that work for us, the better we feel. It takes some initiative to get through this.
Posts: 13116 | From San Francisco | Registered: May 2006
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I truly believe a lot of us kill the active lyme bacteria but in doing so we wipe out our gut flora and our continuing symptoms could very well be from dysbiosis.
Posts: 227 | From fairhaven ma | Registered: May 2015
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quote:Originally posted by shoeless joe: wow 90 percent,glad for you
90 percent sounds like heaven
I truly believe a lot of us kill the active lyme bacteria but in doing so we wipe out our gut flora and our continuing symptoms could very well be from dysbiosis.
-
and ETCETERA
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
quote:Originally posted by shoeless joe:
I truly believe a lot of us kill the active lyme bacteria but in doing so we wipe out our gut flora and our continuing symptoms could very well be from dysbiosis. [/QB]
It depends on what protocol you use...
If you are on antimicrobials only to reach 90%, yep, you'll be killing a lot, including good gut bacteria.
When I reached 90%, i was almost on no killer. Just correcting my immune system, detoxing, eating correctly, doing nosodes (which are targeted only to Borrelia)...
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I agree with exercise. And diet. They are key, and if I am at 90%, not 100, it's because I'm not following an excellent diet. I always exercise so that's never an issue. I would be lost without exercise.
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
- sunlight directly on skin,
- natural food probiotics daily,
- grounding and EMR protection / treatment
- heavy metal + toxins detox
- cavitations
- psycho blockades
- acupuncture or TCM will help meridians and organs balance.
And recently I'm doing Vital Force Technology formulas: all side effect free, these formulas are exaclty built to support the whole body!
Some formulas for the CNS, ANS. Others to the GI tract. Others for the immune support. Others for the brain. Oxygenation. Inflammation. Hormones. Minerals. Silver. Kidney support. Formula to avoid caries (tooth decay). Liver, spleen,pancreas support... ...
I do think VFT is helping me in so many ways that I can't even describe here.
It's not for acute lyme, I feel, but mostly for the ones trying to get back to be fully functioning, mostly when the major part of infections are under control, in all senses!
And the cost is very small, you need practically to buy them once, and keep shifting formulas.
For example, nothing I took before could ever solve my low body temperature. I do feel a HUGE improve on that (not solved yet though).
I don't feel cold anymore, as I had been my whole life (even before lyme). No matter summer, winter, spring, I always felt MOSTLY cold, even under strong sunlight.
It's really MUCH better on that sense (note that that problem is certainly older than 3 decades, as far as I can remember I felt cold...)
Or the EMR sensibility. It got better during the years, after lyme, but I was still sensible. I still am, but I feel it diminished to about 20% of what I was, about 6 months ago.
I do feel I'm calm, relaxed, less anxious as I haven't felt, I think, for more than a decade.
We do not know, but since the era of mobile phones and wi fis, most of us lost reference of how it is to live without such EMR pollution.
I only realized that after using the EMR transformers.
I'm wearing these EMR transformers on my body instead of attaching it to the cell phone (that I rarely use because of EMR sensitivity).
Anyway, I'm really astonished with the results I'm getting. I mean, the speed of change in the inner mechanisms of my body is almost unbelievable.
it's been about a year of experiments with VFT formulas. I'm still learning how to use their products...
Posts: 6199 | From Brussels | Registered: Oct 2007
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