At a loss for treating my kid - what to try next? Opinions welcomed! UPDATED

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1000Daisies
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   Posted 5/7/2018 8:59 AM (GMT -6)   
I'm struggling with treating Kid#2. Background: He was on abx for years proactively previously. Despite that, he seriously got so sick that he couldn't attend school regularly for nearly two years. He went from a fully functioning kid to not being able to go to school. We dropped the abx and switched to various herbals (and other things), and he slowly improved so much that he's back at school for most days this year (but still missed a fair share of days/partial days - but he does go the majority of the year). This is a huge improvement from prior years. BUT...

However, this past winter to current (starting in December), he's been slowly slipping backwards and getting worse overall - despite whatever I try. This past month has been pretty bad/difficult.

What does he have? Wish I knew. He tested positive for lyme, but I suspect babesia/bartonella to definitely be more of an issue. He didn't respond much to the lyme herbals that he was previously on. He improved more on the babesia/bartonella herbals in my opinion previously.

He is currently on babesia/bartonella herbals (and has been for quite some time - for nearly a year now?). He is on very low dose (we took a break in January) and only on 5 drops each now (been on higher previously).

He has previously responded well to antivirals, as this is apparently a big factor for him. However, he no longer appears to be responding to them anymore. NP suggested that we try the prescription antivirals. I talked to our functional medicine doctor (LLMD), and he agreed we can try this too if we want.

We've done the heavy metal supplements and testing. He tests really low on all heavy metals and doesn't appear to be a concern so we moved on after we've done numerous cycles for that.

I've given anti-yeast supplements in the past (short term) and doesn't seem to make a difference in symptoms, but I'd like to try another round for longer.

We've done HBOT (hard and soft), but it doesn't seem to improve his symptoms. We will likely do another round this summer with soft chamber.

He's done numerous UVLrx but doesn't seem to be responding now to it. (Seemed to really help previously though although in an atypical way compared to others.)

I don't believe mold is an issue, but we do sometimes use the anti-mold medication for bad days and barely helps (if it at all).

Revisiting with our NP (we haven't seen in awhile) to get his opinion again on direction.
Probably dropping the Buhner herbals and switching to Byron Whiter herbals instead.
I'm leaning toward the prescription anti-virals to give that a try.
I'm also thinking of doing an anti-parasite supplement that I haven't tried yet.
LDI has also been an option if we can't make progress.
If we go to a clinic/center, this would be the summer to do it (but I have concerns with doing so).

I'm at a loss of what to try next. I'm clearly missing something with him and haven't figured it out yet. Any feedback?

UPDATED:
Well, after consulting with NP, we came up with a plan.

Next steps...
1. Byron White detox2 and anti-inflammatory formulas.
2. Anti-virals (prescription and Byron White herbal formula).
3. Add in Byron White Babesia and bartonella formulas.
4. LDI if above does not help (but it's so very new).

I also have the Byron White adrenal formula. Maybe I should try that between steps 2 and 3. Wonder if that affects his moods/anger.

I listened to Byron White speak during the Chronic Lyme Disease Summit #3. I understood him to say that when people react to very low doses of the herbal formulas, that they are very toxic and to back up to address the detox and inflammation. He recommended the detox2 formula before doing the other types of specific herbals (like babs/bartonella/etc). Said he saw improvement from detox2/anti-inflammation (believe he said both?) first before even adding the other combo herbals. I thought that was hopeful (although we don't tend to react well to what works for others - but this makes good logical sense).
My Kid#2 doesn't respond to any detox methods, so it's discouraging. But I'm going to give this a try and see what happens!

open to other feedback!
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) : 5/20/2018 12:55:31 PM (GMT-6)


claude783
Regular Member


Date Joined Sep 2013
Total Posts : 160
   Posted 5/7/2018 9:15 AM (GMT -6)   
It seems that you have tried the best medical advice out there!

I would suggest you go over some of my previous posts and maybe try something outside the box.

Recently I purchased at a garage sale an electro-magnetic health device made during the 1980's.

The information which came with it was astounding. Used to cure cancer, cataract, high blood pressure, and many more things.

I had discovered on my own last year about curing cataracts with magnetic fields. So that came as no surprise. This machine had been specially made for a doctor.

As I say, you might try my previous post and build one of the machines, and purchase some of the other equipment.

God Bless Claude

elvin
Regular Member


Date Joined Apr 2018
Total Posts : 86
   Posted 5/7/2018 9:57 AM (GMT -6)   
Niacin? I just started looking into this. It looks pretty powerful.

Also, borax is very effective for symptoms and treatment. some say it shuts down the immune system but i've only seen research that says very high doses might do that. lower doses boost the immune system. i know it's controversial but i've found it to be very helpful. I don't do it everyday and i just use a pinch or two in a glass of water. I think the female dose is 1/8 tsp for liter and male (adult) is 1/4 for a liter. also, it may cause a herx so start with a few grains if you decide to try it. it's detailed on earth clinic.com. there is also a forum on earthclinc

k07
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Date Joined Sep 2015
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   Posted 5/7/2018 10:04 AM (GMT -6)   
I would go for the LDI. Especially since he's done antibiotics and herbals in the past. Could be that he just needs help modulating his immune system. I am still taking it but not clear if it is helping due to fluctuation in symptoms.

k07
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Date Joined Sep 2015
Total Posts : 2501
   Posted 5/7/2018 10:09 AM (GMT -6)   
Also, you could always try the antiviral for a bit then move on to LDI if you had no response. Dr. H's office had me try famvir for 6 months. No huge reaction either way - maybe less fatigue.

elvin
Regular Member


Date Joined Apr 2018
Total Posts : 86
   Posted 5/7/2018 10:28 AM (GMT -6)   
what is LDI?

Girlie
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Date Joined May 2014
Total Posts : 32608
   Posted 5/7/2018 11:09 AM (GMT -6)   
elvin said...
what is LDI?


Low dose immunotherapy.

It’s like homeopathy but more diluted.
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

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 273
   Posted 5/7/2018 12:33 PM (GMT -6)   
I wouldn't get too outside the box-and I don't know much about LDI. It might be better to keep switching herbals. The Byron White herbals might work really well. Also have you tried oregano oil or garlic for antivirals. Also maybe viruses are not a main part of your child's problem. Have you tested for EBV virus?

I'm not a fan of too much outside the box treatments, especially for kids, because they can't tell what they are feeling as well as adults, and it's hard to tell if they are having a bad reaction. I know I never could tell what I was feeling when I was a kid. I suppose a rife machine couldn't hurt though.

I haven't heard about borax, but for me I would rather use it to wash my clothes in.

It's so hard to find the missing piece. I'm always wondering why this person and that person gets better and I don't. I wonder why a lot of people get bit by ticks and don't get sick. I always keep feeling that I'm also missing some small piece to fit it all together, because I'm very healthy in some ways, but I just can't seem to function normally, and the Lyme just is still there.

elvin
Regular Member


Date Joined Apr 2018
Total Posts : 86
   Posted 5/7/2018 12:39 PM (GMT -6)   
The washing clothes thing is what everyone mentions but you should at least research it. Plenty of people (sick and healthy) use it for various reasons, for thousands of years. If you give him a few grains in a glass of water he will probably feel better that day and then herx the next day or so. I went very gradually but i got up to 1/4 of a teaspoon every other day or so just to quell the symptoms. Now i just use it intermittently. There are several websites and videos.

Kat1000
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Date Joined Feb 2017
Total Posts : 666
   Posted 5/7/2018 3:11 PM (GMT -6)   
I like the idea of switching up the herbals. I've been having some success with the biopure cocktail. There is a tea on the website that tastes good and supposedly helps. It's nice to have something besides the swamp water, I mean cocktail. I put a little stevia in the water/cocktail to make it taste better.

I did Buhner's most of last year. I did think about Byron too but liked what I read about the biopure. As you know, everyone is different.

Have you tried acupuncture? Lymph massage?

goshawk
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Date Joined Sep 2016
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   Posted 5/7/2018 3:38 PM (GMT -6)   
How old is child # 2 and what are the current symptoms?

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1679
   Posted 5/7/2018 3:41 PM (GMT -6)   
1000Daisies,

I am so sorry the saga continues.

Instead of playing guessing games and taking a crapshoot at what to try next, I would suggest the following:

1. Get one of the doctors to run a fresh battery of tests: standard stuff, multiple viruses (EBV, CMV, HHV-6, other herpes viruses, parvo virus, etc), multiple bacterias (mycoplasma pneumonia, chlamydia pneumonia, toxoplasma, etc), any indirect blood testing that can indicate parasites, candida, leaky gut; total antibody panels (IGG, IGE, IGA, IGM) that show immune health status, anything else you can think of. Most of that stuff can be run through Labcorp.

You can also get CD57, C6 peptide, and some of the CIRS labs run (follow Shoemaker's instructions on those or it's worthless). You could also test for babesia, brucella, RMSF, bartonella with Labcorp.

The point of all that is to look for clues. Play up the symptoms if needed to get the labs ordered. You're stuck and you need to find out why.

2. I know you've had bioresonance before and had some questionable experiences. ArtAngel has been talking about it some, and it's on my radar. I don't want muscle testing or energy healing, but I'm curious about bioresonance. Some seem to get accurate answers with it. If you're open to another try, maybe you can get references to a really good one. If it works like I'm thinking it does, seems like it would save a lot of time and money and playing guinea pig.

Rikky1
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Date Joined Jun 2015
Total Posts : 2860
   Posted 5/7/2018 4:03 PM (GMT -6)   
Oy vey is all I can say ;o(

Has your kid tried anti-parasiticals like Alinia or Ivermectin? This is a must for any full court press on these critters.

Lymiemomster
Regular Member


Date Joined Aug 2016
Total Posts : 192
   Posted 5/7/2018 8:05 PM (GMT -6)   
I am soo sorry to hear about your DS #2!!

If you don’t mind, what are his main symptoms rn. Also what exactly is he taking rn as far as herbals/supplements. Did anything happen or change (supplement wise?)right at or before the “decline”?

1000Daisies
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Date Joined Apr 2016
Total Posts : 2437
   Posted 5/18/2018 10:28 AM (GMT -6)   
WalkingbyFaith said...
1000Daisies,

I am so sorry the saga continues.

Instead of playing guessing games and taking a crapshoot at what to try next, I would suggest the following:

1. Get one of the doctors to run a fresh battery of tests: standard stuff, multiple viruses (EBV, CMV, HHV-6, other herpes viruses, parvo virus, etc), multiple bacterias (mycoplasma pneumonia, chlamydia pneumonia, toxoplasma, etc), any indirect blood testing that can indicate parasites, candida, leaky gut; total antibody panels (IGG, IGE, IGA, IGM) that show immune health status, anything else you can think of. Most of that stuff can be run through Labcorp.

You can also get CD57, C6 peptide, and some of the CIRS labs run (follow Shoemaker's instructions on those or it's worthless). You could also test for babesia, brucella, RMSF, bartonella with Labcorp.

The point of all that is to look for clues. Play up the symptoms if needed to get the labs ordered. You're stuck and you need to find out why.



Thanks, WBF. We have done so much testing over the years that I finally had enough! Most of the good tests are out of pocket. So, with four of us being affected, I had to make decisions on what to spend money on. We have done a lot of the testing that you already mentioned for him and didn't really help us either way (especially since tests can be falsely negative). I suspect Babesia and/or Bartonella are still factors. Perhaps viruses (want to rule that out now). But, like my other kid, I feel he is really difficult to treat and that there is some type of immune dysfunction that is not allowing treatments to be as effective. Still guessing here. sad

(We still do the regular maintenance testing - CBC, CMP, CD57, C4a, etc a few times per year, for some years now.)

Post Edited (1000Daisies) : 5/18/2018 10:44:02 AM (GMT-6)


1000Daisies
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Date Joined Apr 2016
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   Posted 5/18/2018 10:33 AM (GMT -6)   
Notime4lyme said...
I'm not a fan of too much outside the box treatments, especially for kids, because they can't tell what they are feeling as well as adults, and it's hard to tell if they are having a bad reaction. I know I never could tell what I was feeling when I was a kid. I suppose a rife machine couldn't hurt though.

He is an older kid (ugh - taller than me now! LOL), so fortunately, he can communicate to me on how he is feeling. smile Admittedly, kids though don't always have the insight like adults may have.


Notime4lyme said...
It's so hard to find the missing piece. I'm always wondering why this person and that person gets better and I don't. I wonder why a lot of people get bit by ticks and don't get sick. I always keep feeling that I'm also missing some small piece to fit it all together, because I'm very healthy in some ways, but I just can't seem to function normally, and the Lyme just is still there.


I felt like that with Kid#1 - that I was missing some piece to fit it together too. And now that he's well for over a year and I reflect back on this treatment, I can't even honestly say what exactly worked. I mean - don't get me wrong, I know things that helped him for sure (a few things stick out). But we did so many things of trial/error and most things seemed like failure. But obviously, we must have stumbled upon something to get his immune system to function properly.

1000Daisies
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Date Joined Apr 2016
Total Posts : 2437
   Posted 5/18/2018 10:42 AM (GMT -6)   
Rikky, no on both. I did just read a book (Incurable Me) where he talks about Allina. I'll put that on the list to investigate after we do our current plan. (FWIW - Kid#1 is well and hadn't taken either of those.)

Lymiemonster/goshawk - his current symptoms are mostly extreme anger/mood stability, probably some fatigue, and generally not feeling himself. (And no - this is far beyond normal teen issues.)
No major change in his protocol - just mainly on herbals. Very minimal supplements (for sleep primarily). He's off everything previously now as we are changing path/course (no change in his decline).

Kat1000 - interesting about the biopure cocktail. I hadn't heard of that one yet. I just looked it up. Do tell us how it works for you!
We've gone down the HPU/KPU pathway previously and did trials of BioPure Core. I see they have a second formula of that. Just curious if you take the BioPure Core too?
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.

1000Daisies
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Date Joined Apr 2016
Total Posts : 2437
   Posted 5/20/2018 12:56 PM (GMT -6)   
Update in original post. Still would love more feedback on current plan?
Also, this is a shameless bump too. 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.

Raleighgirlie
Regular Member


Date Joined May 2017
Total Posts : 140
   Posted 5/20/2018 7:30 PM (GMT -6)   
Has he had HLA testing done? Maybe he has trouble detoxing out those suckers like I do and they just keep getting reabsorbed. Is he taking binders? Have you tried oil of oregano? I have read good things about the Byron White formulas but I have never tried them.I hate the thought of any child suffering with this disease sad

Donjr
Regular Member


Date Joined Apr 2018
Total Posts : 84
   Posted 5/20/2018 8:49 PM (GMT -6)   
1000daisys,
Maybe I am not the best to offer advice but this is what I suggest, stop all that you are doing wait a week let his body recover, rest rest rest do not let him over due anything, then immune support for three days, that being liquid vitamin c and other immune support like kefir and lots of green veggies. lots of fruit, kefir everyday, then start lauricidin one pellet twice a day for three days then move to two for three days etc till you get to his herx tolerable area, stay there for as long as it takes to clear the herx, then move to fresh garlic one clove twice a day with the lauricidin taken not together space hr apart, lots of veggies and salads etc only Italian dressing, it is great for the Bart gut symptoms, get up to 4 cloves 2 twice a day, YouTube how to take it you slice it etc. then once garlic is up to 4 cloves move back to raising the lauricidin till you get up to a scoop divided by 2 times a day so half in am and half in pm that is max dose. I think his system is overwhelmed, the thing I hate about llmd’s they do too much all at once, the hare always looses, to me that is throwing stuff against the wall in hope. Treat the Bart, and babs together with garlic and lauricidin, after you have 4 cloves and one scoop daily see how this young guy feels then maybe one herb but not more than one. Keep doing kefir at least 24 oz a week. It helps immune system. No nsaid pills etc that makes inflammation worse. Hope you find your healing for him I pray for you and your family. Love to you! Lots of great advice here but too much can kick a man when down and I think that is what is happening here, this disease is curable if you use a slow and steady pace.

1000Daisies
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Date Joined Apr 2016
Total Posts : 2437
   Posted 5/20/2018 9:09 PM (GMT -6)   
Raleighgirlie said...
Has he had HLA testing done? Maybe he has trouble detoxing out those suckers like I do and they just keep getting reabsorbed. Is he taking binders? Have you tried oil of oregano? I have read good things about the Byron White formulas but I have never tried them.I hate the thought of any child suffering with this disease sad


We've done numerous detox methods over the years and have mostly seen none or little benefit from such.

Yes, we've done binders like activated charcoal and cholestrymine.

Our next step is the Byron White detox2 and anti-inflammatory. So, we haven't tried those yet. I wonder how he'll do on those!

What does HLA testing tell you? I googled little and saw a lot about organ transplant compatability. For chronic illness, what does HLA tell you? And if you have it, how do you treat? Or how that information benefit you?? (I can ask my functional medicine doctor at our next visit.)

Thanks for the note!

Post Edited (1000Daisies) : 5/20/2018 9:23:05 PM (GMT-6)


1000Daisies
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Date Joined Apr 2016
Total Posts : 2437
   Posted 5/20/2018 9:13 PM (GMT -6)   
Donjr said...
1000daisys,
Maybe I am not the best to offer advice but this is what I suggest, stop all that you are doing wait a week let his body recover, rest rest rest do not let him over due anything, then immune support for three days, that being liquid vitamin c and other immune support like kefir and lots of green veggies. lots of fruit, kefir everyday, then start lauricidin one pellet twice a day for three days then move to two for three days etc till you get to his herx tolerable area, stay there for as long as it takes to clear the herx, then move to fresh garlic one clove twice a day with the lauricidin taken not together space hr apart, lots of veggies and salads etc only Italian dressing, it is great for the Bart gut symptoms, get up to 4 cloves 2 twice a day, YouTube how to take it you slice it etc. then once garlic is up to 4 cloves move back to raising the lauricidin till you get up to a scoop divided by 2 times a day so half in am and half in pm that is max dose. I think his system is overwhelmed, the thing I hate about llmd’s they do too much all at once, the hare always looses, to me that is throwing stuff against the wall in hope. Treat the Bart, and babs together with garlic and lauricidin, after you have 4 cloves and one scoop daily see how this young guy feels then maybe one herb but not more than one. Keep doing kefir at least 24 oz a week. It helps immune system. No nsaid pills etc that makes inflammation worse. Hope you find your healing for him I pray for you and your family. Love to you! Lots of great advice here but too much can kick a man when down and I think that is what is happening here, this disease is curable if you use a slow and steady pace.


Thanks for your detailed response. We have done some of what you already suggested, but I do like and appreciate your approach!!

FWIW - we have taken breaks (which I think is a good thing for us to reevaluate sometimes). smile We've also done monolaurin many rounds (but not the lauricidin for him). He responded negatively at first, but then few days, he's much much better. However, he no longer responds to monolaurin anymore. Given that, would you change your recommendation at all (since he's done multiple rounds of monolaurin)? Just curious!

Thanks for your note, and you are certainly more than qualified to give your approach! You have some good points for sure! Thanks!

Donjr
Regular Member


Date Joined Apr 2018
Total Posts : 84
   Posted 5/20/2018 9:41 PM (GMT -6)   
No, I would still take if you can afford take only the pure nothing added version, the garlic will kill what is left they both kill all forms cyst, biofilm, and spirochetes, monolaurin is a lipid protein buster it dissolves the greasy layers of the bacteria that it uses to protect itself, in the lab it took sometimes three days for it to kill the bacteria but it did it works slower than garlic so the combo would be great. I would take it for at least 6 months and garlic too and see where you are then. It is helping me a lot but I am not at full strength on garlic or the lauricidin, but I also take one 100 mg of doxy per day. A microbiologist posted this combo healed his whole family. His theory is the dox makes it go into cyst form within an hr of taking it and stays that way for 22 hrs so two pills is a waste, the garlic and lauricidin kills it no matter what form. Also he said horseradish worked in lab but he never took it but I may add it if needed.
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