What are the layers of Lyme ?

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.

I am proposing fact checking from the mods who I consider to have the knowledge and experience to make that call. Censorship won't get us anywhere.

There have been some absolute claims made that can be harmful. Girlie has called out some of the more absurd claims in the past which is helpful. But my concern is for how information is shared and disseminated especially regarding new members. It takes time to see who has the first hand experience and knowledge of these diseases so when just starting out one may unnecessarily be taken down the wrong path.

I understand this is an incredibly difficult topic for an open forum related to diseases that are often disregarded. I don't have a great solution as some people will view fact checking as censorship. Censoring would destroy progress. We don't have a lot of answers with Lyme but we have some. dcd does bring some good information from various sources but when some of the claims get mixed in it becomes difficult to discern what should be taken seriously and what should be taken with a grain of salt. If everyone reading has been around the forum for a bit then no harm no foul. But it's the newbies that may be fouled and we suffer enough setbacks in this journey.

Girlie said...
dcd: “ But if the mods see fit, they can ban me. Seems to be trend these days 😂 “

You know of several members who have been banned lately?
Banning of members is rare.

I'm not the one who first brought up flagging and censoring my posts, i was responding to breezy

Post Edited (dcd2103) : 1/11/2021 10:22:29 AM (GMT-7)

WalkingbyFaith said...
dcd,

Yes, you have friends on this forum.

Thank you WBF!!! And Astro, Pots and deep_sleep

Post Edited (dcd2103) : 1/11/2021 10:39:28 AM (GMT-7)

"Fact checking" for lyme related treatment?

Did I mis-read this statement?

If it were all that factual, this forum would not need to exist would it...?.

------------------------------------------------------

Just four of the many "treatments" used for lyme mentioned multiple areas on the internet and here are:


1)ABX doesnt seem to even work for some people. And thats as simple as it gets. ABX can also be dangerous but its FDA approved short term.

2)Herbs are unproven by FDA, but people use them, since they can be helpful (per FDA- no).

3)Bee venom....can you imaging telling a non lymie about this............dont even try, yet people seem to get better from it

4)Electric current wave "gismos".... look like 100% snake oil..........yet some say they work.


Might as well shut down the whole forum if you expect factual. This is all one big trial and error. Yet by doing that, most people get better.

Anyone treating their self assumes ALL liability. If thats to much, then pay a Dr., but LLMD's are not even considered "safe" by the general conventional medical people.

Breezzy said...
I am proposing fact checking from the mods who I consider to have the knowledge and experience to make that call.

The forum rules don't actually prohibit false statements. This has been on my mind a lot the past several months, for reasons that probably are obvious.

Forums on Healing Well vary, and some don't allow posts about non-FDA-approved treatments. Since there's virtually no FDA-approved treatment for chronic Lyme and many of the the overlapping conditions we post about here, it's pretty important that we allow people to post a variety of perspectives, even when they go against our experience and the information we've seen. We all have to assume that people are offering their opinions in good faith, which the member's experience and research support. We're all welcome to ask for links to articles and debate validity, but there's no medical or scientific consensus about most of the things we discuss here. And about something that means so much to all of us, emotions can run high!

Forum rules prohibit explicitly religious and political posts, so I can delete those. I can delete posts that attack or insult individuals. But unfortunately I can't delete things just because I find them to be false or offensive.

Just so people know: Flagging posts alerts the site administrator, who doesn't have any relationship to Lyme disease or our community, and does not alert the moderators. Mods have email addresses available in their profiles, so we can be reached that way.

dcd2103 said...

Girlie said...
dcd: “ But if the mods see fit, they can ban me. Seems to be trend these days 😂 “

You know of several members who have been banned lately?
Banning of members is rare.

I'm not the one who first brought up flagging and censoring my posts, i was responding to breezy

But you said banning members “seems to be a trend these days”

That was what I was referring to.
There’s not a trend to ban members these days - or previously .

lol oh, i was making a joke about trumpy bear getting banned from twitter 😂

"....dcd has flat out insulted me and other people in the past. It's why I disappeared from here for months. He/she/it is a troll.

He/she/it also posted a huge thread saying "Lyme is just autoimmune," which seemed to intentionally be trying to mislead people about what Lyme is. ..."


And that was a long time ago.

He did admit some faults in that post.

There will always be people who dont get along.

There been more direct insulting than that though, and those people were never banned.

One individual never had anything good to say, told most people off, got political, called people names. Only made intentional post as "booby traps" to stir people up. Repeated this over and over.

orbitingaround said...

dcd has flat out insulted me and other people in the past. It's why I disappeared from here for months. He/she/it is a troll.

He/she/it also posted a huge thread saying "Lyme is just autoimmune," which seemed to intentionally be trying to mislead people about what Lyme is.

Sorry, this isnt factual. What is factual is that someone wrote that they were having neuropathy. I tried my best to explain to the person that they may be having small fiber neuropathy and what to do about it.. You proceeded to accuse me of "telling everyone that everything is small fiber neuropathy" to "purposely mislead them". This is a fact and cant be disputed. When I called you out on your BS, you deleted your post. Also an indisputable fact. You probably didnt like that you were wrong and I called you out on it, which is probably why you disappeared. This is an educated guess. You then attacked me several other times. And here you go again, accusing me of purposely trying to mislead people, thereby proving my point. Also another fact.

It seems like whenever anyone suggests that something might be autoimmune or have an inflammatory component, people get upset.

When I wrote that post about lyme and autoimmunity, i was new to this and kicking ideas around. I was excited about a new concept to me, and why i wasnt getting better, and i wrote a post trying to get a discussion going. I did it in good faith, and yet some people really didnt like what I had to say, and continue to attack me for it to this day.

And for the record, i took a lot of the concepts in that post from discussions I had had w/ Dr K, who by the way is one of the most astute observers of the immune system around.

Also, why call me "it" repeatedly? What does that achieve?

Post Edited (dcd2103) : 1/11/2021 1:48:09 PM (GMT-7)

Before this escalates further and the thread gets locked, let's remember that we're here for the open exchange of ideas -- even the ones with which we may disagree. While not always pleasant (again, the "Ignore" feature is available), it's the ability to express ideas that keeps this place from being an echo chamber -- which, at times, it has seemed.

Expressing ideas does not include insults, of course. These are two different issues. Again, I'm urging folks to try discussing conflicts in a civil manner. Doing so one-on-one over e-mail would probably go a long way toward resolving matters, versus dragging it out in a public display where folks feel undue pressure to "win."

Remember the saying: "An eye for an eye leaves the whole world blind."