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New year coming...........maybe some new years healed or almost healed stories (a tradition here)

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Lyme Disease
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New year coming...........maybe some new years healed or almost healed stories (a tradition here)  
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astroman
Veteran Member
Joined : Mar 2014
Posts : 5764
Posted 12/31/2018 1:31 PM (GMT -7)
In the past, some come back new years week to tell their healing stories, there are compilations of these by members too through out the year.

Hopefully as this forum gets less traffic every year this tradition still continues. (This was a very busy place 3-4 years ago).
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My story is lyme got me into whole body health and how everything is connected, ive been going beyond lyme for a while and so should anyone whos health isnt perfect. The fact that you developed chronic lyme in the first place says that , yes, you have some other hidden health issues that helped this turn into a chronic condition.

I continue to be surprised at the lack of health care from standard conventional medicine, it really is all about big industry, so pathetic. Drs are trained and molded this way. Those who truly want to make a difference in peoples health seem to leave or never were in conventional medicine for the long run to begin with.

Government and most Americans are most interested in making the conventional mold more affordable, when in fact the mold itself is the problem. Hopefully this changes with new generations, as its mostly "old farts" who are suborn and brain washed in there ways of health thinking but I have met some young ones like this too.

Post Edited (astroman) : 1/6/2019 11:06:55 AM (GMT-7)

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astroman
Veteran Member
Joined : Mar 2014
Posts : 5764
Posted 1/1/2019 12:38 PM (GMT -7)
Hey healed people.......where are you?
Initial lyme symptoms in late 80's, again with bullseye early 90's. Started ABX 2014, ended in Jan 2016. Flares ended after. Lyme "B gone" as far as I can tell (Cured?). Now: Healing the aftermath-Rebuilding / fine tuning / fixing muscles and still improving nutrition and immune via better gut health. + 20 years of Hashimoto might now be improving.
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dbwilco
Regular Member
Joined : Mar 2016
Posts : 362
Posted 1/1/2019 1:01 PM (GMT -7)
relapsed
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1676
Posted 1/1/2019 1:52 PM (GMT -7)
I don't know if it is how medicine is taught, but seems to be that everything is so compartmentalized. These diseases are not one infection one disease, it is a multitude of factors that can include infections/mold/metals/thyroid/MCAS/genetics/etc/etc synergizing to manifest very complex disease states affecting multiple body systems. Most conventional medicine adheres to a one infection one disease thinking which makes it really hard to tackle complex conditions like this. It's easier to blame the patient for not getting better when their presentation is not adhering to classic formulas (and lab testing) they are used to seeing or have been taught. Often out of sheer exhaustion, doctors will throw patients like us into trashcan diagnoses (for me this was CFS).

Otherwise in regards to those who have recovered, it just may be that they no longer visit the forum? I wonder if when people have spent so much time and energy trying to get better they just don't want to think about lyme or anything related to it ever again after they get better? Lot of emotional baggage with this stuff.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 1/1/2019 2:55 PM (GMT -7)

dbwilco said...
relapsed

Aww dang it! Were you off all treatments when it happened?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 1/1/2019 3:12 PM (GMT -7)
Here's a thread with success stories:




https://www.healingwell.com/community/default.aspx?f=30&m=3562412
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
profile picture
elvin
Regular Member
Joined : Apr 2018
Posts : 160
Posted 1/1/2019 11:29 PM (GMT -7)
I'm feeling great although I'm still treating with naturals and supplements. I have almost no symptoms and have even started working out again.

I plan on treating at least until February of 2020 which would be 2 years of treatment. I will probably continue a maintenance dose of the naturals after that just to be sure but I'm enjoying life and I feel good! I hope the same for everyone here.

I felt like I was dying for several months after my tick bite (October 2017). I wouldn't wish what I felt on my worst enemy.

It takes a long time to grind these infections down. I'm happy to share my protocol even though I've done so in the past. I couldn't guarantee that it will help anyone else but it has saved my life, literally. Best of luck to everyone!
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KentuckyOConnor
Regular Member
Joined : Nov 2018
Posts : 87
Posted 1/1/2019 11:42 PM (GMT -7)
That's awesome, Elvin.. and I know what you mean, when this first began I felt as if I was going to die. I was making videos to leave behind for friends and family. I would love to hear what you've done! so happy for you.
24 years old. Bitten in june 2018. Diagnosed with POTS in August. Treated by J Clinic.
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Wisco woman
Regular Member
Joined : Oct 2017
Posts : 126
Posted 1/1/2019 11:55 PM (GMT -7)
Thanks elvin and girlie i needed some good news.
Sorry to hear that dbwilco. I wish you a speedy journey back to health.
My guess is that the emotional baggage stuff is exactly it. I wish I could forget the last two and a half years. Once I get better 🤞🏼it will be very exciting to be able to think about other things than my health. I do love it when healed members come back and tell their stories though-gives me hope.
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Dmitry
Regular Member
Joined : Feb 2017
Posts : 65
Posted 1/2/2019 4:40 AM (GMT -7)
Take a look at the Marshall Protocol latest info:
https://www.youtube.com/user/DrTrevorMarshall/videos

Antibiotics become less and less effective during the latest years, I see no success stories at all, just remissions followed by relapses, but what is the difference between ABX and steroids then, when one can get a remission from inflammation(symptoms) with prednisolone alone?

Fatal Superbugs: Antibiotics Losing Effectiveness, WHO Says
https://news.nationalgeographic.com/news/2014/05/140501-superbugs-antibiotics-resistance-disease-medicine/

P.S. all lyme/chronic disease forums are dying out, not only this one.
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1676
Posted 1/2/2019 6:58 AM (GMT -7)
Do you think the forums are slowing up because most of the convos have migrated to other social media platforms?

One feature I love about these forums are the archives, it's easy to research and find relevant info.
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Dmitry
Regular Member
Joined : Feb 2017
Posts : 65
Posted 1/2/2019 7:12 AM (GMT -7)
I'am not quite understand why all forums are less active - Chronic Diseases are surely spreading during the last years. Maybe conventional medicine became more advanced in taking care of people symptoms under control using palliative methods(steroids, anti TNF alpha drugs, etc).

There is no raise in alternative social platforms to discuss Lyme either. So, mystery!
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sierraDon
Regular Member
Joined : Aug 2016
Posts : 493
Posted 1/2/2019 7:17 AM (GMT -7)

sebreg said...
Do you think the forums are slowing up because most of the convos have migrated to other social media platforms?

One feature I love about these forums are the archives, it's easy to research and find relevant info.

sebreg, how do you search the archives here, i think the search functionality lacks with searching just the search box.

i think a lot of people moved to FB groups, due to the ease of use. one thing i notice there tho, that differs from here is a 'sense of community' you dont really have that there. and less of a scientific discussion.

when i feel i am at the point of being done, i will surely post my success story here...so others can benefit, and bring hope to those struggling. i think i am getting close, but still hesitant until i am completely off abx (right now pulsing 2 weeks on, 3 weeks off) and any herbal type supplements.

right now I feel good and largely functional, and only a few symptoms that are left that i think are due to other conditions.
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1676
Posted 1/2/2019 7:32 AM (GMT -7)
I just use the word "lyme" + either a medicine/supplement/symptom/etc and usually can find what I'm looking for. Maybe I'm just used to using this search system! I always liked knowing how patients similar to me responded to a medication I was prescribed just so I know what to potentially expect.

I agree about the sense of community. I always enjoyed that about healingwell, I also have a lot of goodwill for this place because it was stumbling upon this forum and having the help of other members that helped me figure out what was going on with my case. Put me on the right path after a decade of misery.

Congrats on all your progress!!! I do think it's important to share the success stories, at my sickest (and most hopeless) I scoured the net for success stories because I needed to know it was possible.
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astroman
Veteran Member
Joined : Mar 2014
Posts : 5764
Posted 1/2/2019 8:50 AM (GMT -7)
this is way better than fb and easier to use. No one gives details in fb, plus zero community feel. Not much participation there. It only helps for local dr reviews etc.
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BookWyrm
Regular Member
Joined : Feb 2017
Posts : 95
Posted 1/2/2019 9:29 AM (GMT -7)
I'm in the same boat as dbwilco-relapsed, but I'm hopeful to be posting remission status soon. I agree that FB doesn't have the same feel of community as here. Only reason I am even in one of those groups is so I can see when the in-person meetings are scheduled. So far I've only been to one of those and it was... interesting.
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sierraDon
Regular Member
Joined : Aug 2016
Posts : 493
Posted 1/2/2019 9:43 AM (GMT -7)

astroman said...
this is way better than fb and easier to use. No one gives details in fb, plus zero community feel. Not much participation there. It only helps for local dr reviews etc.

I think somethings are easier there, but the main things that lack are sense of community and quality of posts/dialogue there.

what is easier there is ability to post (i.e. through an app), i like search a little better, and the reply to post functionality - the quote post functionality doesn't work right, and even so the person you are quoting doesn't get notified.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 1/2/2019 10:40 AM (GMT -7)

sebreg said...
Do you think the forums are slowing up because most of the convos have migrated to other social media platforms?

One feature I love about these forums are the archives, it's easy to research and find relevant info.

This is part of it for sure.
I’ve seen several FB forums in the past six months.

Also for this particular forum - I used to type “lyme forum” in the google search bar and this site would come up - it doesn’t anymore.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
profile picture
Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 1/2/2019 10:48 AM (GMT -7)
I also like the sense of community here.

And also - what Sebreg said - This forum is what pointed me in the direction of Lyme... so I am grateful for that. And will always be partial to the forum.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
profile picture
jb1994
Regular Member
Joined : Sep 2018
Posts : 316
Posted 1/2/2019 7:31 PM (GMT -7)
I've heard of the Marshall protocol and was just about to ask about it in another post. Does anyone know anything about it?

As for me I started off the year with the worst week I've had in months, gastro wise, I was so backed up...and I only slept about 2 hrs last night due to being stuffed up (in the nose that is). These GI issues food intolerances are the worst. All I had was a big green salad and about 6oz fish because I was so constipated and the salad made it worse. TMI
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 1/2/2019 8:38 PM (GMT -7)
Re- Marshall protocol:

“At its essence, the MP involves five key elements, each of which is supported by the latest insights in molecular science. MP patients must:

-take a minimum of four doses of olmesartan (Benicar) per day
-wean off any immunosuppressive or potentially immunosuppressive therapies
-avoid the consumption of vitamin D, as well as certain other immunosuppressive foods;
- avoid as far as possible stress and environmental immune suppression
-manage exposure to light, depending on photosensitivity and blood levels of vitamin D”

https://mpkb.org/home/patients/protocol_overview
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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jb1994
Regular Member
Joined : Sep 2018
Posts : 316
Posted 1/2/2019 8:40 PM (GMT -7)
So basically get a prescription of Benicar, mmk, now how to figure how to do that
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 1/2/2019 8:42 PM (GMT -7)
From what I’ve read it’s difficult to follow the MP - as it can take a few years and you need to avoid sunlight - dark glasses, long sleeves etc
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
profile picture
jb1994
Regular Member
Joined : Sep 2018
Posts : 316
Posted 1/2/2019 9:57 PM (GMT -7)
That sounds dumb. Nevermind
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elvin
Regular Member
Joined : Apr 2018
Posts : 160
Posted 1/3/2019 10:46 PM (GMT -7)
Below is my current protocol. I got it from researching many sites, this forum, and reading research papers.

monolaurin 1tsp
papaya tablets (from whole foods) 5 per day
apple cider pill 1 per day
turmeric pill 1 per day
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