Something positive to share!! [UPDATE]

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1000Daisies
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Date Joined Apr 2016
Total Posts : 2059
   Posted 5/15/2017 3:44 PM (GMT -7)   
As some of you may know, my family has been struggling for years, like many others here. I usually post about our struggles and questions related to such. But now, I am posting something different!

Kid#1 was the sickest out of all of us. I actually don't go into the specifics of those dark years, but trust me when I say it's about as bad as it gets.
After several years of treatment, he is doing really well at this point!! I hesitate saying this because I don't want to jinx it because of this roller coaster ride!!
His labs are also reflecting how he's feeling: CD-57 highest ever for him (91) and C4A is within normal range.
He was previously having physical herxs (eg flu-like symptoms) every few weeks, but it's been some months since his last identifiable physical herx. (He's had a couple of viruses that didn't fit the symptoms of his typical herxs.)
ETA: He has strong seasonal regression (like clockwork!) every fall-spring (especially fall). This is the first year where he showed no regression in fall and no regression in spring. This is huge factor for him!

These are all very promising for him!

But mostly, he's acting like a normal teenager. Like a normal, healthy teenager.

He is still doing Buhner's herbals and mHBOT. He doesn't appear to react to any of the Buhner's herbals - except for the Woodland Essence C.S.A., which tends to make him moody/irritable (but not too bad).
Otherwise, nobody would ever know he was as sick as he was. He appears to be such a healthy/normal teenager.

Moments like this gives me hope. I hope it does for you too.

The moral of the story -- is never ever give up. He took SEVERAL YEARS to get to this point. Yes, I said YEARS. ETA: He is/was extremely difficult to treat. Most things we tried were failures or seemingly of little help. But we kept trying and trying.

I don't know what the future will bring, and I fully realize he may relapse again at some point (it's really early on in his healing).... But we will enjoy this period of good, the good labs, and general lack of symptoms... and just cherish every moment!

And if any doctor (who told us that we couldn't cure his "incurable" diagnosis - eg many of his prior diagnosis which have all been resolved) ever reads this, you were wrong. You were so very wrong.

UPDATE (7.29.17):
He is still doing overall very well. Knock on wood.
It's been around ~6 months since his last physical flare (which was the last of his major symptoms to go)!
We are still proactively treating with herbals for babesia/bartonella (and others) and mHBOT occasionally. He does seem to be a bit moody when I increase doses for these herbals, but so far, nothing significant like previously.
I will continue to treat all of us well beyond feeling better to make sure we have this covered! I also feel it's going to take some time to recover/heal from all of the damage done by the pathogens, inflammation, and treatments (abx, other medications, etc).
Fall-winter-spring will be the next major test for him!
But so far, he is still maintaining his overall wellness! And we hope so desperately for this to continue!

UPDATE (12.7.17):
Still doing really well!
No regression at all again this past fall.
Fast approaching 1 year of wellness. smile
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Post Edited (1000Daisies) : 12/7/2017 6:01:13 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27973
   Posted 5/15/2017 3:54 PM (GMT -7)   
1000Daisies - I am so happy for you/your son/your whole family!

This is great news and it gives your two other children hope and inspiration.

You must be ecstatic!!

We mustn't ever give up !!!
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

reminder
Regular Member


Date Joined Dec 2015
Total Posts : 467
   Posted 5/15/2017 3:55 PM (GMT -7)   
Your post made me smile and feel a sense of hope)

Thanks for sharing this.


R

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1738
   Posted 5/15/2017 4:03 PM (GMT -7)   
Your post came at the best time ...

I've been here in a totally bipolar state, back and forth, will I be well, will I always be sick...can I to it...????

One day at a time and a daily dose of optimism helps a lot!

Thank you for being that source.
Moderator, Lyme Forum

Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast and leaky gut

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 1342
   Posted 5/15/2017 4:10 PM (GMT -7)   
I love your post!!! and I am so very happy for you and your family.

Keep treating and healing, the best of days are yet to come for you all.smile

Thanks for this sunshiny update, take care, Jo

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2197
   Posted 5/15/2017 4:14 PM (GMT -7)   
Yay!!!!! So happy to hear this!

runningwild
Regular Member


Date Joined Jul 2016
Total Posts : 69
   Posted 5/15/2017 4:22 PM (GMT -7)   
He has earned his health by not giving up. So glad for him and your family. Inspiration.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6201
   Posted 5/15/2017 6:26 PM (GMT -7)   
SUCCESS!!! Ha! Take THAT nasty spirochetes! And useless medical community!

So proud of you Daisy and Little Guy #1.

Awesome post.

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27973
   Posted 5/15/2017 6:42 PM (GMT -7)   
"I fully realize he may relapse again at some point (it's really early on in his healing).... "


BUT if he does...you know he's achieved it once...and he'll achieve it again. It's doable. You got this.
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

ChickenArise
Veteran Member


Date Joined Nov 2015
Total Posts : 1241
   Posted 5/15/2017 7:14 PM (GMT -7)   
Very happy for you and kid #1. Its nice to hear any success stories and triumphs along the way.

Also what you wrote reminded me that I have to take my herbals and tea, so thanks for that too!
AUG14:Mold Sick.FALL16:Clinical Bart/Borellia.
NOV16:Lung Pain. JAN17:Morg Scalp (resolved)
FEB17: Pupils, throat glow UV light.
Xanax,Kratom,Ambien,+Biaxin,+Fluconazole,+Augmentin,Tini(P),+Doxy
(Ahthelmintic Pause)
MAR17:+DEC,+Stabilized Oxygen O7
Focus:Morgellons pre fibrous
Proto:Mod Klinghardt
Tx: self

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9226
   Posted 5/15/2017 7:49 PM (GMT -7)   
Do not stop treating until that 2 month mark with no symptoms. Just hang in there.

It is hard not to give up, but we all must not do it.
____________

Good Article

Little Bear (LB)
Veteran Member


Date Joined Oct 2015
Total Posts : 616
   Posted 5/16/2017 12:28 AM (GMT -7)   
Hi 1000Daisies-

Thank you so much for taking the time to share with us how kid#1 is doing. This gives a lot of hope to so many people here!

I hope that health and healing continues for you and the rest of your family!

Best Wishes!
Misdiagnosed for 27 years. Below is my first thread.
www.healingwell.com/community/default.aspx?f=30&m=3509506

Homozygous MTHFR a1298c
Started to talk normal again May 2016
Still dealing with other symptoms

Lyme Disease is a real MTHFR!!!

Jinna
Veteran Member


Date Joined May 2017
Total Posts : 692
   Posted 5/16/2017 12:56 AM (GMT -7)   
Great news! congratulations!

I also had a daughter very very bad with lyme. She also healed, now 8 years lyme free.

Now you gotta shift the treatments slowly to PREVENTION.

It's a whole new world of possibilities. Much harder to find information, in our experience.

There are fewer people sharing information on how to avoid relapses, and most practitioners don't know what to do when you have no more lyme symptoms...

Nice he's doing HBO already!

We had reached remission many times, but relapsed many times.

the mistake was that, after reaching remission, we had been so fed up with treatments that we stopped EVERYTHING. Even diets sort of slipped a bit...

then of course, as the immune system takes very long to build itself again (dr. K's opinion), you still got to keep some kind of treatment...

It means, the body's immunity is almost good, but still needs a kick. At least, that is how I felt at each relapse.

We did then photon therapy with nosodes, because my daughter was in a full relapse, in winter, back in 2009.

And what it did was: it not only got rid of her relapse, but it also did that kick-in on our immune systems, for both of us! Since then, lyme didn't come back, even if we did ZERO treatments to prevent it coming again.

Photons and nosodes are the most non-invasive treatment we ever did: it looks 100% placebo, even.
But for us, it did work to stop relapses. More than 8 years, lyme free.

We still continue to try to correct our guts (Dr. Rau from Switzerland believes that is one of the main CAUSES for lyme, gut inflammation), still doing detox therapies (heavy metals, specially, bits of anti parasitic stuff)...

Once you reach remission, your brain finally believes it's VERY possible to be lyme free, treatment free!!

And that is the BEST part of remission, in our experience. It's a profound relief.

Enjoy and believe!!! turn

Post Edited (Jinna) : 5/16/2017 2:08:08 AM (GMT-6)


yancync
Regular Member


Date Joined Nov 2015
Total Posts : 488
   Posted 5/16/2017 5:29 AM (GMT -7)   
Just the post I really need to read today 1000Daisies - thank you from the bottom of my heart! And I am so, so very happy to hear he is doing so well now. This is truly a battle and it's great to have these victories! Please keep us posted on him and your others.

I may send you a quick email to see if you have some insight for me if that's alright.

Denver1
Regular Member


Date Joined Apr 2017
Total Posts : 146
   Posted 5/16/2017 5:42 AM (GMT -7)   
Inspirational story! Thank you for sharing, and I wish your son continued health and vitality!

Lymiemomster
Regular Member


Date Joined Aug 2016
Total Posts : 168
   Posted 5/16/2017 7:17 AM (GMT -7)   
Dear Daisies,

I am soo happy for you and your son!!

Your family has been through soo much!!

You are an amazing mom!

I hope you all Keep healing and have more and more good days!!

All the best!
15 yr old son sick no school Oct/15 Dx July/16
Migraines extreme brain fog anxiety/ocd insomnia extreme joint pain neuropathy stomach pain
Aug 3/16 Doxy Zithro BB Bab 2
Oct 5 Zithro and rifampin, Bab 2 anxiety/panic attacks -quit rif
Dec Zithro, Artesunate and finishing Bab 2 Mid Dec add japanese knotweed,gou teng
Feb 2017 80% normal back to school, added houttuynia

Post Edited (Lymiemomster) : 5/16/2017 11:49:58 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27973
   Posted 5/16/2017 10:30 AM (GMT -7)   
bumping up - because I KNOW everyone will want to read this!
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

Krimpet 🍔
Veteran Member


Date Joined Apr 2016
Total Posts : 3274
   Posted 5/16/2017 2:13 PM (GMT -7)   
Daisies that is absolutely amazing. I am so so happy to read such a positive post. It really does give hope to many. Thanks so much for sharing. I really did need to read this today!!
Lyme Moderator

Current treatment: Dr. Jernigan borrelogen, Microbojen, Neuro antitoxin CNS/PNS, monolaurin, lomatium, samento/cats claw, cordyceps, licorice root, Hawthorne (restarting), milk thistle, oregano oil (as needed), gse, adrenal glandular/cortex, vitamin A, D, C, multi, liposomal glutathione, probiotic, fish oil, organic foods
___________________________________

summer16
Veteran Member


Date Joined Jul 2012
Total Posts : 1284
   Posted 5/16/2017 4:45 PM (GMT -7)   
So, so happy for Kid#1 and your family. You all have worked so hard to get to this place. I pray Kid#2 starts feeling better soon. And, yes, this post was very inspirational to many. Many blessings to all.

Patty
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012

TrialbyLyme
Regular Member


Date Joined Oct 2015
Total Posts : 211
   Posted 5/17/2017 12:47 AM (GMT -7)   
Wooohhooooo!!!! Really happy for you and your family!! Thank you for sharing and keep up the good fight! smile
Tick bite 1982
Diagnosed 2015
Stage 4 Endometriosis, 7 surgeries
ABX 2015
Herbs 2016
"Occasionally weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have." -John Piper

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 5/17/2017 7:12 AM (GMT -7)   
Congratulations, 1000 Daisies!!! How wonderful!! I'm so very happy to hear this! I do know what a struggle it can all be.

And sending good vibes for things to continue to fade away!!! Best of luck for all of your family!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2059
   Posted 5/30/2017 10:29 AM (GMT -7)   
PeteZa said...
Do not stop treating until that 2 month mark with no symptoms. Just hang in there.

It is hard not to give up, but we all must not do it.


No worries there. He'll be treated until he leaves the house - which will be much longer than 2 months. smile I plan on continuing with things like herbals, metal removal (albeit they have such small amount), anti-yeast, and mHBOT (HBOT/hard chamber if we have to). Rotating through things. It's just a part of our lives at this point (especially since we have so many in my family that are being treated).
Kid#1: Extremely sick for several years, very difficult to treat, but much better lately!
Kid#2: Very sick now despite being treated for years, very bad year
Kid#3: Doing great, minor relapse, but great again (ironically had least and shortest treatment)!
Me: Adv Labs positive 2016 (suspected I passed to my kids) - not as sick as others, mostly battling fatigue, kidney, heart, and yeast issues

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2059
   Posted 5/30/2017 10:33 AM (GMT -7)   
Thank you all for all of your kind words and support for all of us. It truly means the world to me. THANK YOU!
Kid#1: Extremely sick for several years, very difficult to treat, but much better lately!
Kid#2: Very sick now despite being treated for years, very bad year
Kid#3: Doing great, minor relapse, but great again (ironically had least and shortest treatment)!
Me: Adv Labs positive 2016 (suspected I passed to my kids) - not as sick as others, mostly battling fatigue, kidney, heart, and yeast issues

AK
Regular Member


Date Joined Aug 2016
Total Posts : 245
   Posted 5/31/2017 7:29 PM (GMT -7)   
Happy dance!
Summer flu '91 Chronic Fatigue 5/92 Diagnosed July 98
3 years, 14 abx, minimal improvement by 2001
2001 off abx, many alternatives, good care, good diet,
played hockey and skied on weekends, raised kids, maintained huge gardens, lived life, didn't think about lyme
June 2016 shoved into relapse hell. May 2017 relapse
Borrelia, ehrlichia, babesia, bartonella, mycoplasma, yeast, EBV, cytomegalov

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2059
   Posted 7/29/2017 7:08 PM (GMT -7)   
Posted update in original post. smile
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Very sick now despite being treated for years, still very bad
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.
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