What are the layers of Lyme ?

I know I've read this somewhere, like what to treath first in logical order from the hugest pathogen to the smallest. Someone knows where I could read upon this ? I think it first said to adress parasites but then idk what..

That largest to smallest order was from Klinghardt. I tried googling to find a reference, but went down a rabbit trail. Hopefully someone remembers this.

“ How many people get bitten by a tick and are able to fight it off? The super-majority. ”

Bitten by a tick that has lyme?
I highly doubt the majority can fight it off without some weeks of treatment - ie abx usually.

And the reason Dr. K treats from biggest to smallest is to avoid Russian nesting doll syndrome we're killing one reinfectes with another that might be living inside the larger pathogen ...
i did helminith. candida , protozoa , bacteria , mycoplasma/ CPN , then finally viruses... with some overlapping and what my body wanted out first . with ascaris and giardia gone treatment was easier fwiw...

I think bluelyme is the only one who directly answered Kirali’s question. Thanks, blue! Do you have any links to Klinghardt’s layout and protocol for this?

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As to the off-topic discussion on dcd’s comments, I am wondering where this came from. I agree with astroman, that there are groups of people who have had many tickbites and never knowingly got tickborne diseases or at least nothing like the life altering swirl of symptoms we get.

As to the second half of dcd’s comment, “How many people get a parasitic infection in their GI tract or liver, or get mercury poisoning or mold poisoning, and are able to recover on their own w/o some treatment to remove the toxin? Zero. Zero percent, thats the answer.”, that threw me for a loop. I can’t fathom how you came to that conclusion.

Most people get food poisoning of some kind at some time in their life. They usually have diarrhea and vomiting, but I think most recover naturally by their body’s own means of removing the offending pathogen or substance, if it’s mild and they have a fairly healthy immune response and digestive system.

Mercury and mold poisoning are quite variable and only the seriously ill are likely to ever even consider or discover the source of toxicity and do anything to remove the toxins. Everyone is exposed to mold. Mold is everywhere, including outdoors. The majority of buildings have had a water damage incident and/or humidity issues causing mold growth indoors, often in hidden areas.

Millions of people have or had mercury amalgams. Many conventional dentist offices still use them and remove them with no special precautions, exposing themselves, their staff, and everyone in the building to vapors. Mercury has been and may still be used as an adjuvant in vaccines, which millions of people have had.

In spite of exposure, only a subset of people develop illness related to toxicity from mold or mercury.

Genetics and more importantly, genomics, plays a role in toxicity to various substances. Some have genes activated that impair the immune system’s ability to identify and remove specific toxins (refer to Shoemaker and HLA-DR genes). Others may have methylation defects or other genes that cause impaired functioning of specific detox organs or immune defects.

Additionally, I believe we are all starting to understand that the gut microbiome has a profound effect on many functions in the body. If enough of those functions become impaired, toxicity can ensue.

Finally, the doctor I saw described it as a bathtub overflowing. Toxicity often isn’t from a single source unless the person had an overwhelming exposure or was routinely exposed occupationally or in their living environment. More often, it’s the totality of toxic exposures combined with infectious exposures combined with alterations in the gut microbiome that create the illness that perpetuates itself.

Anyway, that’s my 2 cents.

WalkingbyFaith said...
As to the off-topic discussion on dcd’s comments...

Edit: I wrote this before seeing the last post:

It may seem tangential, but I don't see it as off-topic. It can inform how best to order treatment.

We know antimicrobials can never 100% eradicate bb in late stage Lyme, so it makes sense to address the "terrain" first, then maybe target pathogens in an order such as what was suggested by Dr K.. or I think Girlie has said Dr. J treats babesia first because it lowers immune function...

Post Edited (potsnpans) : 1/8/2021 12:04:41 PM (GMT-7)

Yea astro you did a good job of explaining where I'm coming from and how i view things, that describes my position perfectly, much appreciated! one of those scenarios thats very nuanced and where we can all be right, when the questioned is framed appropriately. Also happy Friday my friend!

1yrinVA,
Insightful post. I, too, have trouble trusting doctors and their protocols. However, I haven’t done too well with self-treatment either. The problem is that so much seems to be trial and error and expense.

I worry about myself, because I’m doing little to treat infections, yet I take a crapload of supplements. I feel like I can’t get serious with treatment until I am out of mold exposure, and in spite of everything, the mold exposure continues to be a viscous cycle.

At the same time, mold itself really isn’t the problem. My body’s response to mold is the problem. I don’t know how to fix me. So far, all I read tells me that in order to get “fixed,” one has to be in a pristine environment possibly for years before the body normalizes.

In the meantime, I continue to decline as I develop increasing numbness all over my body and new muscular problems limiting mobility.

In an ideal world with a patient who tolerates treatment well (that’s not me), you would treat many issues simultaneously. In fact, Dr. Jones (the children’s doctor) says you have to identify all the infections and treat them simultaneously. Not sure how that’s possible with abx, but that’s what he said. It may be easier to treat children than adults. They likely don’t have as much toxicity and aberrant gene activations as adults, nor the broad range of pathogens (including viruses and parasites) that an adult has likely picked up.

Post Edited (WalkingbyFaith) : 1/8/2021 2:47:48 PM (GMT-7)

WalkingbyFaith -

I guess I should clarify on my point re: doctors and protocols, my feeling is, if someone's already tried treating infections directly and it didn't work out, by no means is it a bad idea to try out some other program/protocol a practitioner has come up with. I'd be more concerned about the strict "largest to smallest" or "first this, then that" approaches that could result in withholding treatment for something else that otherwise might be effective.

I'm sorry to hear that you are struggling so much right now, though. I really hope your situation improves. Re: treating infections, I think I remember you mentioning you had stopped Houtty and Sida awhile back - do you think that might have anything to do with some of the decline?

Also, since we've taken some of the same stuff, just thought I'd mention I've been trying to step down my my herbs somewhat and noticed if I take JK alone for a dose, I actually get more inflammation and weird nerve things than I did with JK + Houtty. I think Houtty might have some anti-inflammatory and anti-allergic properties that might help balance out JK for me (albeit while causing hell of its own, haha).


Astroman -

That's interesting about your experience with gluten. I probably have something very similar that I discovered in 2013 (about 4 years prior to my infection with Lyme and Co.). I had struggled with constant fatigue, brain fog, low mood, etc. for years that lifted like magic about 2-3 days after my last meal with gluten when I tried cutting it out. Now I wonder if all those issues were due to some kind of cytokine storm.

This is an interesting topic - but I do wonder whether we really have enough information to work on to answer it properly in terms order of treatment for different co-infections .
From my reading – as far as I can see Generally each LLMD tends to come up with their own way of doing it - and this becomes “the way” for them – but if you go to a new LLMD they will also have their own approach. We should therefore perhaps remind ourselves that LLMD’s, no matter how good or caring, are not immune from confirmation bias.
Perhaps another way of looking at it worth throwing into the mix is along the lines of Horowitz and his approach.
In his MSIDS model he summarises that the Lyme complex illness is basically a multi-inflammatory disease with many factors causing or adding to inflammatory changes all placing a burden on the body, causing damage and dysfunction and preventing recovery. This includes everything we discuss here infection, autoimmunity, gut issues, hormonal issues, neurological and phycological issues, nutrition, etc etc and the treatment approach is to address all of the things that are causing the patient dysfunction/inflammation. By inference we could consider those things that are most obvious and causing the most issues first - and if that does not allow them to recover, then digging deeper and trying to address remaining as yet unaddressed areas.
The point here being that infection / co-infection is not the only area that needs to be addressed for many people to get well.
This also goes some way towards explaining why what works for one person is not the same as the next – as in each patient the most prominent causes of inflammation and dysfunction will be different – hence no one size fits all approach.
Of course this still leaves the task of unpicking which things in all 16 of these categories are actually causing significant issues in each patient - and this is indeed a big task. I think Horowitz and many like him use a pretty comprehensive battery of tests to try to answer this question as best they can (along with a detailed case history and questionnaire) when you do your first consultation.
In terms of “Layers” or “what order to treat” methodology - I find Horowitz’s approach one of the more compelling. Its pretty well described in his second book on Lyme “How can I get better”

WBF – sorry to hear of your continued struggles – but nothing is forever – everything changes with time – and if you keep trying new things there is always hope that you will find the combination that works well for you to move you forward. Hang in there.

Although dcd's comment may be his "learned opinion" from learning about lyme vs treating it (I dont know for sure)(edit: he did treat in the past), his information on this post given is not completely out of line.

As far as other posts.....This forum used to have a lot more "brain storming" than it does today. Its something I miss . Dcd adds to this, I have gained a little more insight on some topics from his point of view vs the same old repeated "lets fix lyme" topics.

"Chronic Lyme" is a bunch of symptoms, just killing the critters can be a long, long road. Making that road trip as efficiently and safely as possible is the key to recovery...and to employment for those unable to fit into the demands of work while ill. Knowing "all body health" is important to all here.

As far as what to treat first it depends on the individual, and no, we dont all have mold issues, or candida, or this or that. Its different for all.

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But for mold - people dont know if mold is a problem till they test for it. Many of Shoemakers test suggestions are standard conventional tests covered by insurance, including a brain MRI. But then MRI info via disc sent to Nueroquant for "deciphering" is out of pocket.

People just cant assume what they have or dont have, and thats unfortunately what many try to do. Use money where it matters, on what you cant do alone.

Example: Something as simple but hidden like low thyroid will have at least 80% of the same symptoms that a tick illness can generate since all of your cells need thyroid hormone. And low thyroid may sometimes be a symptom of tick illness, but you still need to treat that separately and see if it gets better to ease up on the bodies "sick" load. in time with whatever tick treatment one gets, this might resolve itself. Or it might not, or maybe partially.

Breezzy said...


dcd, you tested negative for all lyme and confections. You stated you took 30 days of doxy for something but you never posted for what. My question is, what personal experience do you have with the treatment of lyme disease and coinfections that you have not shared thus far? According to your post history you never had lyme or any of the coinfections. You do realize this is the lyme forum and not the auto-immune forum? What is quoted above is disinformation and it is harmful to the lyme community.

By the way, when you stated Igenex is not a trustworthy test and is riddled with false positives? That was disinformation as well. Igenex is in fact one, if not the only test on the market that is peer reviewed.

Mods, I propose action taken to stop the spread of the disinformation for the sake of future members looking for answers. Perhaps flag threads or posts that speak in absolutes when it is clearly disinformation. A new member that comes to this forum could read these posts and actually believe it. It's harmful to the lyme community no matter what context it is in.

lol, this is quite an over-reaction. I'm sorry if I upset you, I really am, but quite frankly most of whats stated on this blog is opinion, not fact. There's just no scientific consensus on most of it, which is why we're all in this position. I'm quite surprised that people took issue with my saying mold should be treated first. Neil Nathan says exactly that. Wrt to the comment you took issue with, that most people's immune systems can fight lyme off...I mean, I'm probably not wrong, and that should be obvious to you if you thought about it. WBF had a great point, however, that most have amalgams and dont react to them, so same thing.

I will say that after re-reading what I wrote, that I was maybe too assertive in my ordering of the "layers", as its all speculation and personal opinion anyway. Maybe I was in a mood when I wrote that. I'd promise not to do it again..but again, we might as well shut the forum down for lack of content then if we cant share opinion, only fact.

Wrt to my not having lyme...i grew up in CT. I was bitten by many ticks. Had "lyme symptoms". Had 4 bands on the western blot. I treated with bicillin, plaquenil, doxy, azithromycin, and buehner herbs. Never got me anywhere. I probably had exposure, but I came to the conclusion that if the abx arent working, something else is the problem. As such, I think I have some experience wrt to treating and being diagnosed with lyme, and what to consider when the abx aren't working. I think a lot of people in here are in the same boat, and would find that experience helpful.

Wrt to your comments about this being a lyme and not an autoimmune forum...you wouldnt tell someone with MCAS that a lyme blog isnt for them, so why autoimmunity? Have you noticed that maybe half, if not more, of the conversation is geared towards things other than lyme? Many of the people on here are battling mold, parasites, coinfections, metals, candida etc. They have immune system issues, either autoimmune or deficiencies....they have food insensitivities, allergies, CFS, MCAS, CIRS, MCS. It's all the same thing. This is a disease of the modern world. You can replace spirochetes w/ any of the other stressors or inflammatory triggers I mentioned above, and run into similar mish-mash of symptoms. It's all about the inflammation. It's not just about bugs, and you're the one spreading misinformation if that's your message. I'm here to add a little counterweight to that.

I've made quite a few friends on this blog I'd like to think, and I think they realize that I'm here to further the discussion in good faith. I put a lot of work into my posts, I try different interventions and report on them to help others. Maybe I do get carried away with my message that there's "more to lyme than just lyme", but I do try to keep thinking outside the box, because it seems like some of us end up in a position where we "have lyme" but abx dont help. But if the mods see fit, they can ban me. Seems to be trend these days 😂

Post Edited (dcd2103) : 1/10/2021 7:42:55 PM (GMT-7)

Deep_sleep said something that struck me - especially that last part:

“Then after I found out I had Lyme I went to a clinic online and took tests for Lyme, mold, heavy, metals, Iodine. I decided what tests I took as I suspected these and I was positive for all the things I tested.”

Many of us don’t test for a lot of things because we don’t have the money, or we don’t know if it’s worth the money. I imagine if everyone with chronic Lyme symptoms did most of these tests, they would be positive for quite a few things.

The longer we’re sick, the more dysfunctional our bodies get. More toxins accumulate. More deficiencies occur. Even if Lyme was the catalyst that started it all (which we likely will never know for certain), recovery will require more than treating Lyme alone.

I think the question that really drives most of our treatment decisions is this: What is really necessary for me address in order to get out of this pit?

We all try to make calculated decisions based on what testing we have done, our history, our intuition, and our financial and logistical constraints.

When I found my way here, I had been diagnosed with CIRS from mold and had done 3 tests for Lyme - Labcorp WB, Igenex, and DNA Connexions. I knew from my own history and experience that mold was not the only thing wrong or the cause of my initial onset of life altering symptoms. (You can see those test results in my signature block.) Then I discovered there were more possibilities - bartonella and babesia. Though my tests for those were negative, I had many clinical symptoms even in childhood.

I decided to treat using Buhner’s protocol. I found myself here and quickly learned from here and from what I had heard from doctors that there were many other issues - dental amalgams, heavy metal toxicity, cavitations, 23&me gene testing for methylation issues, HPU/KPU, parasites, EMF avoidance, pesticides, MCAS and on and on. It’s all very overwhelming.

It was clear from testing and from my own reactions that mold was a major factor for me. I also had terrible chemical sensitivities for years. Just before I found my Lyme doctor, 23&me stopped doing a portion of the testing, so I never did that. I did go on to get my amalgams removed. Can’t remember the cost, but it was somewhere between $5-7k. Dealing with mold and years of supplements took the rest of my $$. I did do an OAT test, but my doctor basically just read the report and suggested the supplements the lab suggested. No real benefit or illumination for me. I am sure I must have mercury and probably other heavy metals, but I still haven’t tested for that - mainly because I don’t feel comfortable with any of the treatments for it.

I can remember many times in the first couple of years on here, I would swing like a pendulum, greatly influenced by the posts I read here and the terrible “not knowing” what issues were really driving my illness. On the one hand, I wanted to test and treat much more than I did and thought I had to address every avenue. The other part of me would swing back the other way and tell me if I would just focus on simple things like eating a clean, nutrient dense diet, avoiding mold, and healing my gut then all would be well.

While I have come a long way, especially in the past year and a half, I still have far to go. I am still dealing with mold exposure, still have IBS and ropeworm, and have worse regular labs now in my earlier years, indicating more dysfunction than before. On the positive side, I have gained immense knowledge and exposure to ideas and information on this forum and experience with herbs and supplements that give me a hedge towards recovery.

I have come to the conclusion that I am considerably more sensitive to and affected by mold and mycotoxins than other CIRS patients. Mold is a very difficult issue to deal with, as it is extremely difficult to find safe housing and is a financially devastating burden to bear. While mold in buildings is a problem that society needs to address, the bigger issue is that something is wrong with me. I need to fix me, so that I am not abnormally affected by it. Until then, I keep trotting on the hamster wheel, too stubborn to give up. I continue to try new things and pray for God to heal me to the uttermost.