Just a question

Candida is sometimes used as a generic yeast term, it’s infamous, it has many strains itself and then there are other yeast strains all together. The more times one has had it, you get to know the symptoms and learn to know what helps regain the balance.

Thyroid is another that has overlapping sx with these infections, again, that’s eventually learned with experience.

Lyme if lucky, has the bullseye.

Some of your questions are similar to Georgias long post - the why stuff.

Why do some of you come here just to argue?

You bring up an important question. And it is one that many Lyme disease sufferers and their doctors often ponder. Sometimes we can become so overwhelmed by learning about all the different diseases and pathogens that it's hard to pinpoint the "offending pathogen" What you have to realize is that the clinical situation is distinct to the individual.

In my case I was always in great health all my life. I got over 50 tick bites over the summer of '15. So I when I got very ill, I immediately knew that some tick borne infection was the culprit. It just reinforced my certainty when my dog tested potive for RMSF, Ehrlichia, and Lyme. In my case it was cut and dry. For many it is not. I finally decided it was important to remember the chronology and not get sidetracked. I recognized Lyme as a trigger. We all have EBV, herpes, toxoplasmosis, and hundreds more potentially destructive pathogens running around in our bodies at any given time. So its not particularly important to focus on symptomless carriers of Lyme or any other pathogen. The data is so skewed when it comes to Lyme and the tests so innaccurate, you cant really ascertain any given facts about the current state of Lyme infection. What happens is something creates an imbalance, disrupting the immune system allowing these potentially dangerous pathogens to become potentiated. So its the "single thread" theory that if you cut the offending pathogen string, the whole pathogen disease state will collapse. Its usually not that simple, but thats a good place to start, and with so much uncertainty and poor testing, this is the only thing the best doctors can do, even in 2019 - trial and error.

But also, I I think this is common for people to try to look somewhere besides Lyme, because of the outright lies, misrepresentaions and distortions about this disease by our public health authorities CDC, IDSA, and modern medical science.

You see, what happens with Lyme sufferers is we get "gaslighted" by the scientific and medical establishment.(If you arent familiar with this term you should google it to understand the context) We are told we are crazy. So people suffering with this sometimes dont want to feel crazy. And they say maybe I was wrong. I mean for the layperson, it would be hard to just accept the fact that our modern multi-billion dollar budgeted health authorities could be so wrong. If you had told me about Chronic Lyme in 2010, I would have been likely to think it was all BS and some sort of 'lazy housewife syndrome" I believed the 'science.' Most people dont look at the research, and they accept the outright lies as scientific consensus. They dont check the work, they just read the headlines and trust the so called experts. I didt learn the truth until it affected me.

So naturally many people will try to find other explanations for their symptoms that align better with "mainstream medical science"

I think this accounts for some of the situation you describe.

And again, because of the innaccurate testing and misunderstanding and lying about the true lyme symptom picture, what happens is many people are given fake diagnosis like fibromyalgia. There a very scary and disturbing link between alzheimers, ALS, MS and Lyme. But does that mean that every person who is diagnosed with ALS, alzheimers or MS can attribute it to Lyme? some would say yes. Some would take the other extreme and say none of these diseases are ever caused by Lyme.

So when there is such a lack of factual information and real statistics, and so much uncertainty, the two opposites tend to go to extremes and exaggerate. And as with almost all things- the TRUTH will be somewhere in between.

Bottom line- dont read ANYTHING into the current "Lyme data"

But what I think is most important about all of this is simplifying the disease picture and focusing. So whats most important is WHAT IS ACTIONABLE INTELLIGENCE

This is a CIA/ military term. It basically means what can we do about this information. Will it change our stratgeic approach. As far as EBV and herpes and hundreds of other bacterial protozoal and parasitic pathogens, you would be surprised to learn how many officially recommend NO TREATMENT or that any effective treatment is unknown.

You can take antivirals for EBV and herpes, but only in extreme cases and they have very limited effectiveness.

So again, what can you DO about it? Not much by modern medical standards. So if theres no known treatment for EBV, it doesnt really help to focus on it. One thing medical science can accurately say is that EBV is never the triggering or offending pathogen. It is always potentiated by something else.

All this uncertainty is why I am convinced that a full spectrum herbal protocol combined with limited pharmaceuticals is the way to go. It sounds like an oxymoron, but you want to focus on one main TRIGGERING pathogen if you can, but treat in a way that can heal all the pathogens. So many of the herbs that Buhner has found to be useful in Lyme and other tick diseases are also antiviral. But more importantly many of his herbs are immuno-modulating. This means they actually balance the immune response. A lot of symptoms are from our immune system OVER-reacting and hurting ourself. This is inflammation. This is auto-immune disorder. Other times the immune system is UNDER-reacting. It is too weak and cant fight back against pathogens. These herbs can raise immune response in those lacking it, and lower immune response in those that have too much- the same herb can do both.

Personally my treatment was full bore herbal, with some pharmaceuticals. I took so many different anti viral, anti-bacterial herbs, (as well as Lysine which is considered a mild anti-viral) that I cant really say for sure beyond a shadow of a doubt what got treated. I even did a couple weeks of low dose colloidial silver. So theoreticially I could have treated a hundred pathogens and the offending one perhaps wasnt Lyme. I tend to believe it was, or at least some form of tick borne infection. So I think in my case, focusing on Lyme first helped me. As i planned to go trial and error all the way down the line.

I had a 5 stage treatment plan to address Lyme first, then Bartonella, and then babesia as well as cyst form lyme.

I didnt need to use step 3 or 4. Addressing Lyme directly helped me, but again with such a full spectrum herbal, vitamin, and pharma protocol I was also potentially treating many other pathogens.

I focused on the idea of lyme in my mind, but the herbs didnt discriminate. And Im sure they helped my immune response, which may be the actual key.

Now every lab that was out of wack is back to normal. EBV and all, after it being in the 1000's. And I felt so different i knew my labs would be better. I didnt even feel the need to test.

The point is, the human mind must have one or two things to FOCUS on, even if you have to trick yourself. We cant address 50 things at once and fight 50 battles at the same time. You'll never really know 100% for sure anyway because testing and science is still not 100% fact. You just gotta start choppin and monitor your progress, and dont get bogged down or led into rabbit trails.

I also really loved that post. I think the way logmoss describes the immuno-modulating effect some of the herbs have is exactly the way Buhner defines the term 'adaptogen'

Edit: it does make them sound a bit magical though!

Post Edited (potsnpans) : 12/14/2019 3:34:17 PM (GMT-7)

I wrote this post together with logmoss!
I have a very similar story to yours, as I also treated with Buhner's herbs, Chinese herbs and lots of body metabolism support in homeopathic form.

Thanks for talking about your experience. I just disagree on EBV, as mononucleosis is known to be the beginning of CFS for many people.
I think it's just a matter of lack of luck, somehow. Many tick bites was what triggered your symptoms, like mine, just one tick bite started the hell after bullseye rash, then other tick bites came to worsen the situation.

I do think that without a widespectrum treatment such as proposed by Buhner, I would also be still sick.
Totally agree that balancing the immune system is a very important part of treatment.
For me, binders were also at the center: without them, I could not really improve, as herxes looked like never lifting.
only ingesting all those binders in GREAT amounts made me progress...

We were lucky to know ticks caused our lyme, or were the initiators of our disease. Not the case for most people, who never saw any tick bite...
Anyway, thanks for your thoughts!!
What are you treating at the moment?

Post Edited (Shasta) : 12/14/2019 3:59:10 PM (GMT-7)

You are 100% correct Shasta. You just brought up a very important point that deserves its own thread or even perhaps its own entire webpage! The biggest problem we have in the Lyme world is the word Lyme itself. We have been stifled from any progress by semantics, and I think its that way by design. When you say Lyme what do we mean? Borrellia Burghdorferi sensu stricto? A bacterial disease that was only isolated and discovered in the 70's in Lyme Connecticut? Of course not. Borellia-like pathogens have existed in ticks for thousands of years and have learned to adapt to their carriers ( ticks) and their host (us) with amazing aptitude. But this strict narrow needle eye sized definition of borreliosis is what is the standard by which we test for and identify this disease.

This conveniently allows the medical and scientific communities to ignore and obfuscate the real issue. Language is a very powerful tool. They can claim things like "Lyme doesnt exist in the southeast" And technically they may be correct that the Northeastern US strain of Borrelia isolated in the 70's isnt found here. But other strains absolutely are. They arent technically Lyme although they respond to the same treatment. Same thing in Australia. People are becoming very sick, some dying after getting tick bites in the outback bush. The government there claims there is absolutely zero "Lyme Disease" on the entire continent. But they know full well there have been other borrelia like pathogens on every continent but antarctica for thousands of years. They just continue to play the semantics game to the point they pretend there is no problem at all. And of course this bizarre opinion affects very real world things like health insurance coverage.

This is what can happen when science fails, or is abused as it is with "Lyme." Words begin to lose meaning and its almost as if you are trying to speak to someone in a foreign language. I dont know how you fix that.

Some doctors like Richard Horowitz have tried to adopt a new term, MSIDS -Multi-Symptom Immune Disorder Syndrome- or something to that effect. Personally I dont find these types of acronyms particularly helpful as they seem to complicate the image of this disease, especially for the people unfamiliar with Borrelia/Lyme.

Again, i feel like there could be entire volumes written about the semantic abuses of the the word "Lyme." It is such a scientifically crude and underdeveloped word that has become imbedded in our lexicon and it isnt going anywhere. But its the closest touchpoint we have to borrelliosis or even tick borne disease as a whole. So many of us will have to take that label in our "official medical designation."

So instead of trying to understand and interpret, and then respond to, all the semantic shortcomings of the word Lyme, I think its far more useful to take things out of the general sense and put them in a more individual specific sense.Whats good for the Gander isnt necessarily good for the goose, if you follow that metaphor. It's important to boil it down simple practical and pragmatic assessments that people can take on their own. Knowledge they can gain on their own.

Our medical system is one size fits all. You have to fit in a predetermined box, and our box doesnt really exist.
Ultimately I think diagnosis and treatment comes down to personal detective work and intuition, as unscientific as that may sound. With me it was a very drastic and rapid decline in my health. So I could quickly look back and say, ok what happened from there to here? Answer-Tick bites. Lots of em. Some people never see a tick, as you pointed out, some are sick for many years and may be suffering from another disease which Lyme makes worse. So its very individual specific. This is why "Lyme" defies the idea of a one size fits all doxycycline treatment. And many of our modern medical and biological scientists cant seem to wrap their heads around that.

Intuition is ultimately all you got. You can listen to the doctors and the specialists all you want but its also important to try to think and remember exactly when you became sick. Did we take a hiking trip, walk out of tall grass swamp, have some unknown itches? You have to be honest with yourself and assess the real potential of infection in a way that makes sense to you not just trusting a lab result. In many cases people will have a bingo moment. Now for some this may be impossible. Some may even be born with Borrelia, so there may be no breakpoint moment where they can say I was healthy before THIS. But if you can identify that point and use your intuition, I believe in many cases, you will find your way to the answer.

With how bad the testing is, and how far we are away from FACTS with borrelia, this basic HONEST intuition gives you just as much of a chance of reaching the TRUE answer than all of our so called sophisticated modern medical science and multibillion dollar research budgets combined. At this point its a coinflip. Youre gonna be right or wrong.

I say all this as a person who suffered with this disease for 4 years, in part because I was so overwhelmed by all the conflicting information I refused to even treat until I was certain what I needed to treat. EBV? candida? Parasites?Hepes? Q fever? Brucella? I only became more confused. It was only when I simplified and focused and trusted my own memory and intuition that I found a path to getting healthy again.

Astroman, sorry I can't contribute with anything new for you.
just skip my post, and consider it for newbies then.

Or this group is only for veterans?

I sincerely do not see the majority of people here questioning the existence of lyme disease itself, as a disease / diagnosis.
If it were common sense, this forum would not exist, as it is STILL a lyme forum.

“ I sincerely do not see the majority of people here questioning the existence of lyme disease itself, as a disease / diagnosis.
If it were common sense, this forum would not exist, as it is STILL a lyme forum.“

Lyme Disease is a catch all - most lyme docs don’t just treat lyme - they treat Babesia, Bartonella, ehrlichia, anaplasmosis (sp?), Candida......

Shasta said - "And Astroman, you are the one who will suffer if you're kicked off from here.

I'm very long lyme free, more than 10 years now, and so is my daughter, who suffered her 1st 5 years of life in hell.
I don't come here looking for answers.

I just come from times to times to tell what I think keeps us lyme free for more than 10 years.
It has much more to do than fighting bacteria."

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Cheery good morning sunshine, good to see your in such a positive mood again (not)

I am "cured" and wont be getting kicked off here LOL.

I answer more questions than I ask.

"It has much more to do than fighting bacteria" - Ha ha........Your preaching to the choir.