Wellness Success Story : one year plus

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1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2437
   Posted 3/1/2018 9:51 AM (GMT -6)   
I said I would post at the year mark, and we passed it! It's been over a year now that my kid has been "well". (I generally avoid saying cured/remission because those words tend to be controversial. He is simply "well" and healthy!). He has not shown any obvious symptoms related to the lyme and company (for the record, I think coinfections were more of an issue than lyme - like babesia and bartonella and who knows what else). Last symptoms were February 2017. Every few weeks, he would have flu-like symptoms (fever, chills, headache, sore throat, weak). And then they stopped - just like that.
NOTE: To be honest, the only "issue" that I see in his health is very, very mild situational anxiety.

It's hard to compare a "before" and "after" with him, as I believe he had this in utero/breastfeeding. He was generally well the first several years. But given our duration, I am comparing a young child to a teenager/young adult. So, it's really impossible to truly compare given how much a person changes in those years!

BUT he went from a completely nonfunctional young child (who missed a lot of school for 3 years, IEPs, 504s, part-time school, truancy, homebound, hospitals) to a "normal" teenager who is socialable, happy, functioning, active, and A/B student. We've had truancy called on us for missing too much school (they didn't do anything since he had well-documented medical issues) and have had some very traumatic experiences with medical professionals (including one very disastrous hospital stay that I still have stress over to this day).

All of his prior diagnosis (some very severe and "life-long" diagnosis) are all dropped. If I ever saw any of those unsupporting doctors who didn't believe and failed to help us in any manner, I will tell them that they were all "so very wrong.... so very very wrong".

He was a very challenging case to treat, and there are still many things I don't fully understand upon reflection (and probably never will). We have had many, many, many epic failures in both mainstream/allopathic AND alternative medicines. He was unable to heal on long term/multiple abx (for years), as well as other treatments. So, we switched paths numerous times.

However, we saw a very bright and compassionate functional medicine MD who was instrumental in helping us. We are probably one of his most challenging cases, as we don't respond "typically" to treatment compared to so many others.

Some key highlights for him that I recall:
IV gluatathion/Myer's Cocktail : I feel this "woke" up his immune system. After starting these, he started to have regular physical herxs which he didn't have previously.
HBOT (both hard and soft chambers) : This was done later in treatment (not the early years). This was a HUGE factor in him healing/improving.
Herbals : He was on herbals when the last of his symptoms went away (and periodic HBOT).
Persistence - never ever giving up.

So, although he's going well nowadays, I can't overlook the fact that this strongly negatively impacted his childhood and robbed him of a good part of it. This will be a part of him forever.

The time has come for things to change in our medical community. We need to train doctors differently (clearly, it's a broken system). We need to support those with chronic illnesses. No more excuses blaming the sick (or the parents!). We need help!! No more excuses - time to change how things are done!

My best advice is to never, ever give up. NEVER. My son was a very challenging case, and it took several years of trial/error for treatment. BUT he is well now. So, even though it took a long time, I share this with you because even the most challenging cases CAN be well again!

I truly wish everybody the best in their journey to healing and better health!
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) : 3/1/2018 9:00:36 AM (GMT-7)


physedgirl09
Regular Member


Date Joined May 2017
Total Posts : 399
   Posted 3/1/2018 10:29 AM (GMT -6)   
wow so happy to read this today!!!! congrats on getting him well and staying well!!!
Symptoms since July 2016. Very mild: slight dizziness but nothing to call the doctor about.
February 2017=flu like symptoms; felt like i was dying from February to June. Tested positive for active EBV.
June 2017= tested western blot: reactive lgm 23 lgg 41 & 66
Started ABX treatment in June to present with llmd
functioning at about 70%. determined to get to 100%

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 137
   Posted 3/1/2018 12:57 PM (GMT -6)   
Fantastic news... im so happy for you.. just goes to show you should never ever give up!!

summer16
Veteran Member


Date Joined Jul 2012
Total Posts : 1306
   Posted 3/1/2018 1:02 PM (GMT -6)   
So happy for your son. Perseverance definitely was the key to his success. You must be exhausted. Bless you and your family. Thank you for the update.

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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 3/1/2018 2:11 PM (GMT -6)   
1000Daisies - Thank you, thank you for your wonderful post.

Wow...what your son (and your entire family) has been through.

Shame,shame on all those Dr.'s who didn't help..or even try to help. You should go back to the ones who diagnosed him with the lifelong, severe illnesses.

And...thank you for the reminder that we must never give up...we do not know when healing is just around the corner.

I hope your other two sons also get to full healing soon.

Im crying happy tears for you, 1000Daisies. <3
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 3/1/2018 2:17 PM (GMT -6)   
1000 Daisies - I'd like to add this to our Success Stories thread.

Is that okay with you? Or would you prefer to type out a different one?
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

Lapis_29
Veteran Member


Date Joined Sep 2017
Total Posts : 844
   Posted 3/1/2018 4:30 PM (GMT -6)   
wow

great to hear

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2108
   Posted 3/1/2018 4:56 PM (GMT -6)   
Great news!!!!

Made my day also thank you so much for sharing with us, Take care, Jo

hannahrdog
Regular Member


Date Joined Feb 2017
Total Posts : 52
   Posted 3/1/2018 5:27 PM (GMT -6)   
awesome!!!

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1679
   Posted 3/1/2018 6:09 PM (GMT -6)   
1000Daisies,

Wow! You are a true hero 🙂 I'm so thrilled that your son is finally healthy and well. What a blessing. Thank you so much for sharing his journey with us.

Lymiemomster
Regular Member


Date Joined Aug 2016
Total Posts : 192
   Posted 3/2/2018 12:13 AM (GMT -6)   
Oh Daisies,

This is the most wonderful story!!

I am so happy for you and your son!

And I wish good health to you and your other boys!!

Big hug

RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 216
   Posted 3/2/2018 2:00 AM (GMT 0)   
Very good to hear, and thank you for sharing the success!!
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 0, 2, 0, 3

Started treatment in May 2017
Currently on Azithromycin, Doxycycline, Plaquenil, Rifampicin, Delimmun

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2501
   Posted 3/2/2018 6:13 AM (GMT -6)   
What a difficult journey. So very happy he (and you) have made it through! Thanks for sharing. You are such a great mother.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/2/2018 7:21 AM (GMT -6)   
That's awesome! As horrible as this disease is and for you and your chidren to go through, it is struggles such as these that can build character and strength. While you say it robbed him of his childhood years, it most likely made him wise beyond his years and instilled a sense of being able to defeat whatever life throws his way.

My prayers are with you and your family. Tha nk you so much for the encouraging update.

Octobrsky13
Regular Member


Date Joined Feb 2016
Total Posts : 178
   Posted 3/3/2018 11:43 AM (GMT -6)   
So happy to hear this. Prayers that it continues and you can all live a normal life going forward. Thanks for posting.

mandyh
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/3/2018 11:45 AM (GMT -6)   
congratulations! that is a milestone. hopefully remission will stay!! we have our fingers crossed. smile

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 544
   Posted 3/5/2018 12:47 PM (GMT -6)   
So, SO glad you posted this! I know how hard it is to post they are doing well - fear that you'll jinx it and all that - or at least I did.

I've been busy with work so haven't checked in for awhile and am thrilled to see your post.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents
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