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InvisibleLizardWizard
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The Lyme Disease Thread.
    #24404527 - 06/14/17 08:06 AM (6 years, 7 months ago)

Hi y'all.

I've had lyme for close to 4 years now, and lately I've been noticing some other members mentioning they have Lyme Disease (LD).

How about a thread to help each other out when things get bad? If you have LD, and have an ache or a twitch or a failing organ or "just" a bad apathetic streak, come in and I will take the time to read your post, see if there's anything I can relate to and what has helped me with it. Others can do the same, but I would appreciate it if we kept the giving of advice to the people who actually have experience with lyme, whether it be they have it, or their partner or child has it, or even their dog/cat for that matter. If you're a doctor, or have extensive knowledge on medicinal plants/trees/herbs/mushrooms/other therapies relating to lyme, you're welcome to give advice too. The reason for this is because many a lymie is familiar with the following:

-well meaning friend: Hey, I've heard garlic/pot/turmeric/blue light on your sphincter with an alternating red flash while soothing music plays, is effective against lyme disease! You should really try that out! It's really going to help you! It cures it for sure! (or something along those lines)
-me: (thinking:Oh god, here's one of those again, thinking it's as simple as to take a freaking pill, fuck that shit, who the hell does he think he is trying to help me with shitbrained idea's like that. Probably got it off some online health magazine and jumped straight to texting me...) Yeah, thanks for trying to help, but that's not gonna do it, and I'll figure it out myself.
-well meaning friend: (thinking: what an asshole, I just spent an hour reading that whole article for him, and now he just wipes it off the table, as if he knows all about garlic/pot/turmeric/blue light on sphincter with alternating red flash while soothing music plays. He's never gonna get better with that attitude...) Oh ok, well, feel better soon!

So if you don't merely fall in the category of well-meaning shroomerite, but  also in the other categories mentioned, feel free to contribute or ask away like your life depends on it, as others' lives might as well.

Cheers! To health!


EDIT: I'm adding these 2 studies to the first post, so they're not lost in an expanding thread.

Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Microcolony B. burgdorferi Persisters Which Are Sterilized by Daptomycin/ Doxycycline/Cefuroxime without Pulse Dosing

Review of evidence for immune evasion and persistent infection in Lyme disease


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The best things in life
can be smelled on one's fingers.


Edited by LizardWizard (12/16/17 08:20 AM)


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OfflineMorel Guy
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Re: The Lyme Disease Thread. [Re: LizardWizard]
    #24404592 - 06/14/17 08:32 AM (6 years, 7 months ago)

Had an in-law for a period of time before a siblings divorce.  He had Parkinson from Lyme disease.  He has passed away from the illness.


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"in sterquiliniis invenitur in stercore invenitur"

In filth it will be found in dung it will be found


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InvisibleLizardWizard
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Re: The Lyme Disease Thread. [Re: Morel Guy]
    #24404690 - 06/14/17 09:11 AM (6 years, 7 months ago)

Wow. Nice first reply :lol:

enter serious vibe


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The best things in life
can be smelled on one's fingers.


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OfflineMorel Guy
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Re: The Lyme Disease Thread. [Re: LizardWizard]
    #24404996 - 06/14/17 11:20 AM (6 years, 7 months ago)

I worry about my dog getting lyme.  He had two ticks first of March.  That's real early for Ohio to have ticks.  We have been in the woods again and I check him very closely.

They have a k9 vaccine for lyme.  Just haven't spent the cash yet.  It's about $100 or so with the exam.  It's a shot and a booster as we all know vaccines usually require a booster.


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"in sterquiliniis invenitur in stercore invenitur"

In filth it will be found in dung it will be found


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OfflineTravelAgency
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Re: The Lyme Disease Thread. [Re: Morel Guy]
    #24406006 - 06/14/17 05:50 PM (6 years, 7 months ago)

Great idea

:kaneclap:


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Offlinecrowseed
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Re: The Lyme Disease Thread. [Re: LizardWizard] * 1
    #24410718 - 06/16/17 04:21 PM (6 years, 7 months ago)

This thread is very welcome thanks! It's Lyme disease that got me interested in mushrooms and later into mush cult. I doubt I'd still be alive if I hadn't stumbled on fly agaric and horse hoof tinder fungus. And libs. Recently started with lion's mane (though not having much success growing it yet) which seems really promising too. Birch bracket has been really helpful too.

Best thing I've found overall is 3 day fasts to reboot the immune system. My immune system was seemingly blind to some of the infection/s but could see it and fight it even after the first fast. I do one a season now and actually enjoy it.

Giving up gluten, dairy, sugar and alcohol and cutting down carbohydrates massively was also enormously beneficial. Eating coastal Paleo (lots of seafood and seaweed) also really helped, not least because it maximises the amount of glutathione your body can make. Oh, earthing and negative ions and minimising electromagnetic exposure also really helped. At one point I was getting radiation burns from cellphone, kindle and netbook.

I'm still not better (been kaiboshed for nearly 10 years though been infected for decades) but am much better than I was. Mostly through natural stuff, though I did get several months of antibiotics, antifungals etc. Been treating for 6 years and still consider myself incredibly lucky to have even found out that it was Lyme.

Looking forward to sharing thoughts and ideas.


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Offlinedrake89
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Re: The Lyme Disease Thread. [Re: crowseed]
    #24411372 - 06/16/17 09:21 PM (6 years, 7 months ago)

Quote:

crowseed said:
At one point I was getting radiation burns from cellphone, kindle and netbook.

Looking forward to sharing thoughts and ideas.




this thread belongs elsewhere


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InvisibleLizardWizard
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Re: The Lyme Disease Thread. [Re: drake89]
    #24411788 - 06/17/17 02:37 AM (6 years, 7 months ago)

Then please direct me to the proper forum.  Is there a health forum somewhere on here? Can we maybe make one? I'm agreeing that medicinal mushrooms is not exactly the right place, but on the other hand, the pub didn't exactly seem like the right place either to me, and medicinal mushrooms will probably be part of treatment for most people with LD on here, so that's why I put it up here. But like I said, if you know of a better place, please suggest it!


--------------------
The best things in life
can be smelled on one's fingers.


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InvisibleZiran
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Re: The Lyme Disease Thread. [Re: LizardWizard]
    #24412541 - 06/17/17 12:25 PM (6 years, 7 months ago)

I've had ticks on me recently from foraging in the woods. You'll know if you get it.



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Song Of Healing
:super: Updated Pf Tek Guide :super:
Ziran's Teks
AMU Q&A Thread
The Chinese word for nature is zìrán and it means that of which is of itself.



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InvisibleLizardWizard
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Re: The Lyme Disease Thread. [Re: Ziran]
    #24412575 - 06/17/17 12:40 PM (6 years, 7 months ago)

Yes you will, but by then, it's too late of course. And 3 weeks of ABX seems a bit of a joke. Sadly, it's not.


--------------------
The best things in life
can be smelled on one's fingers.


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Offlinecrowseed
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Re: The Lyme Disease Thread. [Re: drake89]
    #24412587 - 06/17/17 12:44 PM (6 years, 7 months ago)

Quote:

drake89 said:
Quote:

crowseed said:
At one point I was getting radiation burns from cellphone, kindle and netbook.

Looking forward to sharing thoughts and ideas.




this thread belongs elsewhere




It might be more relevant than you think - fly agaric is a folk remedy for radiation burns in Siberia!

I guess the subject doesn't belong because GMM is focused on growing gourmet and medicinals rather than using them? It would be great to have somewhere to discuss the benefits of mushrooms and fungi specific to Lyme. Any suggestions welcome.


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InvisibleLizardWizard
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Re: The Lyme Disease Thread. [Re: crowseed]
    #24412637 - 06/17/17 01:13 PM (6 years, 7 months ago)

I looked around to find the health forum, but was quite surprised not to find it... We have spirituality forum, the money matters forum, the cooking forum, an ethnobotanical plants forum, but no freaking health forum? Seems like it's overdue to me...


--------------------
The best things in life
can be smelled on one's fingers.


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OfflineQuadman
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Re: The Lyme Disease Thread. [Re: LizardWizard]
    #24412660 - 06/17/17 01:20 PM (6 years, 7 months ago)

There is Physical and Mental well being just below the Pub.


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InvisibleLizardWizard
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Re: The Lyme Disease Thread. [Re: Quadman]
    #24412681 - 06/17/17 01:29 PM (6 years, 7 months ago)

God damn it! :doublefacepalm:

Missed that... Three times... :tard:


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The best things in life
can be smelled on one's fingers.


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OfflineNature Boy
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Re: The Lyme Disease Thread. [Re: Ziran]
    #24412794 - 06/17/17 02:22 PM (6 years, 7 months ago)

Quote:

Ziran said:
I've had ticks on me recently from foraging in the woods. You'll know if you get it.






Nonsense.  Plenty of people get bitten by ticks and do NOT get the rash.  I am one such person.  My Lyme experience has been a horror story of epic proportions...and I'm a physician!

Reader's Digest version:  Mushroom foraging last summer.  Find tick in right axilla a couple of hours later.  Pluck that fucker off, squeeze it to death, and let it down the drain.  Never got a rash.

About 6 weeks later, have aches and pains, followed by horrendous night sweats, fever, fatigue and migrating joint and muscle pain which made it near impossible to go up and down stairs or get in and out of my car.  After consulting a personal friend who is an infectious disease specialist, I get tested and...Lyme disease, Babesiosis and Anaplasmosis - THREE separate tick borne illnesses.

My spleen was on the verge of rupturing (Babesiosis) and I ended up in hospital with a splenectomy, PICC line and IV Ceftriaxone and oral Minocycline.  Was also having bouts of confusion, issues with language and recall.  Had to have a lumbar puncture and PET scan of the brain which showed I had neuroborreliosis - Lyme spirochetes had gotten into my brain and spinal fluid.

I ended up needing a neurologist, repeated neurocognitive testing, repeat PET scans, and so much more...and that's the SHORT story.

It leaves out the at-home nursing, 10 weeks of out-patient IV ceftriaxone, weekly PICC line dressing changes, and 10 weeks of additional out-patient Minocycline.  Medical bills in the tens of thousands of dollars.

N.B.


--------------------
All submitted posts under this user name are works of pure fiction or outright lies.  Any information, statement, or assertion contained therein should be considered pure unadulterated bullshit.  Note well:  Sorry, but I do not answer PM's unless you are a long-time trusted friend.  If you have a question, ask it in the appropriate thread.

                                                                               


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InvisibleLizardWizard
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Re: The Lyme Disease Thread. [Re: Nature Boy]
    #24412814 - 06/17/17 02:35 PM (6 years, 7 months ago)

Thank you for your contribution Nature Boy. Are you doing well these days? Full recovery?

Edit: And nice to have a physician on the boards!


--------------------
The best things in life
can be smelled on one's fingers.


Edited by LizardWizard (06/17/17 02:36 PM)


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InvisiblePastywhyteMDiscord
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Re: The Lyme Disease Thread. (moved) [Re: LizardWizard]
    #24412827 - 06/17/17 02:41 PM (6 years, 7 months ago)

This thread was moved from Gourmet and Medicinal Mushrooms.

Reason:
Better here


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InvisibleCookieCrumbsM
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Re: The Lyme Disease Thread. [Re: LizardWizard]
    #24412862 - 06/17/17 03:05 PM (6 years, 7 months ago)

Trying not to poke fun at you for how you posted this in the mushrooms section OP. :tongue:


Quote:

LizardWizard said:

-well meaning friend: Hey, I've heard garlic/pot/turmeric/blue light on your sphincter with an alternating red flash while soothing music plays, is effective against lyme disease! You should really try that out! It's really going to help you! It cures it for sure! (or something along those lines)






I do not have lyme disease but I do have a chronic illness that causes widespread pain and weakness. This shit straight up pisses me off. I mean I'm open to things. Half my time on the internet has been spent on trying to find lesser known ways to make life better. Most of it is scammy uneducated senseless bullshit though. Which makes it all the more frustrating because there are lesser known treatments that can improve your well being.


I read this a while back and it... is pretty relatable.

http://www.spine-health.com/blog/open-letter-a-person-chronic-pain
Quote:

Open letter from a person with chronic pain

Having chronic pain means many things change, and a lot of the changes are invisible.

Unlike having cancer or being hurt in an accident, most people do not understand chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.
See Modern Theories of Chronic Pain

Please understand the difference between "happy" and "healthy."
When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or not extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome to.

Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand up for 20 minutes, or an hour.
[this is a big one for me] Just because I managed to stand up for 30 minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can’t move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting "sitting," "walking," "thinking," "concentrating," "being sociable," and so on; it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (and for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able to, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
See Chronic Pain Coping Techniques - Pain Management

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise or do some things to "get my mind off of it" may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder." Obviously, chronic pain can affect the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
See Depression and Chronic Back Pain

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now
, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.


If you want to suggest a cure to me, please don't.
It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
See Pain Management for Chronic Back Pain

If I seem touchy, it's probably because I am.
It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
See 11 Chronic Pain Control Techniques

In many ways I depend on you, people who are not sick.
I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking, or the cleaning. I may need you to take me to the doctor or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.




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          :dancingbear: Free time is the only time :dancingbear:                    :thatsinteresting:


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InvisibleLizardWizard
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Re: The Lyme Disease Thread. [Re: CookieCrumbs]
    #24413189 - 06/17/17 06:05 PM (6 years, 7 months ago)

Thanks Pasty :wave:


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The best things in life
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InvisiblePastywhyteMDiscord
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Re: The Lyme Disease Thread. [Re: LizardWizard]
    #24413196 - 06/17/17 06:08 PM (6 years, 7 months ago)

No problem :hatsoff:


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