Considering moving to naturals

[momcap]

I'm considering moving to naturals. Could anyone here share their experiences with this?

 

My 3 boys have been on aggressive antibiotic therapy for lyme disease since July 2011. Now I'm at a crossroads.

 

DS8(PANS/lyme) is suddenly back to square one psychologically, and we have no idea why. He was at least 90% improved, and sustained that level of improvement for 9 months, with some obvious herxing when we added/changed meds and doses. Now he's almost back to his worst with psych symptoms, although physical symptoms are still at bay.

 

DS7's stomach can no longer tolerate the chronic meds. He's been on and off abx because he keeps getting severe stomach pains and needs a break. He has dropped weight and cries when he eats and drinks. His TSH is really high and we're investigating that further. He's been off meds now for almost a month and is finally complaining less and eating better. BUT, his joint and muscle pains came right back and he's an emotional wreck. He had an angry outburst in school last week, which is not like him at all. He was a strep carrier prior to treatment, and has been complaining of sore throat the last 2 weeks (but also has a cold). Is it strep again?

 

DS5 is doing great! Initially he did not respond as well to treatment, and continued to have debilitating joint pains. Now this last month he's still tolerating high doses of combo meds and I haven't heard any pain complaints at all! He's been happy and active, like a normal busy 5 year old boy.

 

SO - given the situation with DSs8&7, I'm looking for other options. Our LLMD wants us to consider Cowden or Byron White. Does anyone have experience with these? In my gut I feel like they might be helpful, but will they be strong enough?

[SSS]

I did find Byron White strong- although I was using it at the beginning of treatment, I did herx, and never moved up to more than 12 drops 2x a day-

For dd, I would take 1/2 oral syringe of water, put in a cup, add the drops, suck it all back up, squirt in her mouth with syringe, and give a drink after for her to chase.

 

Not to sound dramatic, but the very first Lyme thing I ever took (before antibiotics) was 2 drops of Beyond Balance Bar-1.

Literally, within seconds, I had stabbing behind one eye, and shooting pains down my leg. That one has cats claw, always wondered if that was it.

 

Also, on dd's recent antibiotic break, I found OLE to be very good- that could have been working on viruses. But I have heard OLE taken with antibiotics makes the antibx less effective.

 

So yes, I found those tinctures to be potent.

As for Cowden, I have only used the Burber and Parsley, 10 drops of each together, used for herxing. Seems to help.

[MichaelTampa]

I made this move some months ago (a year ago). It wasn't by choice as much as it was my gut couldn't handle it anymore and any more abx just tore things up inside there and I couldn't sleep with so much acid reflux. This happened after maybe a year or so of what I think were a few different excellent combinations of abx that had given me a lot of progress, and they were starting to do less and less for me. I really felt like I was nearing the finish line, although now that seems to clearly have not been the case.

 

There are other great things out there, some more or less convenient and more or less pricey.

 

- Herbs, such as Byron White, which are strong

- Some homeopathics

- Acupuncture/NAET treatment can guide your system at the bugs as well

- GcMAF, homeopathic or injectable real stuff

- IV ozone treatment (draw blood, add ozone, put it back)

- Light treatment machines such as the Bionic, some go to Germany for this, others buy a machine and go at it themselves (I haven't done either of this approach to this point, but do have experience with the other items I listed)

[Hopeny]

I spoke with an adult who swears her Lyme was cured with Samento, it's Cat Claw but with some properties removed - not sure of the details.

We are just starting with ABX and I wanted to try that first before overloading DD's system. It must be so upsetting to be going through this again.

[Orion]

Have you looked into food allergies? DD never had any until Lyme. She was switched to a gluten-free diet before food allergy testing. With the testing, we found out she wasn't allergic to wheat at all, but to rice, corn, soy, sunflower seeds, eggs and peanuts. Everything she was eating in lieu of the wheat, she couldn't really tolerate! A lot of gut pain, nausea and vomiting cleared up once she stopped eating those foods and was put on IVIg for PANS. She still can't tolerate rice and soy, but the others she now can handle on a rotational basis.

 

She is still on oral abx, and is tolerating them.

Edited May 18, 2012 by Orion

[momcap]

Have you looked into food allergies? DD never had any until Lyme. She was switched to a gluten-free diet before food allergy testing. With the testing, we found out she wasn't allergic to wheat at all, but to rice, corn, soy, sunflower seeds, eggs and peanuts. Everything she was eating in lieu of the wheat, she couldn't really tolerate! A lot of gut pain, nausea and vomiting cleared up once she stopped eating those foods and was put on IVIg for PANS. She still can't tolerate rice and soy, but the others she now can handle on a rotational basis.

 

She is still on oral abx, and is tolerating them.

 

No allergies, but several food sensitivities - peanuts, eggs, milk, and corn. We did a complete elimination diet and then went for almost a year without these foods. That was tough - corn is in EVERYTHING!!! I planted a huge garden and raised chickens, and rarely went to the grocery store at all. But symptoms got progressively worse, so we abandoned the diet. I am reasonably sure that food sensitivites are not a major player. But I could be wrong. Any other ideas?

[momcap]

I did find Byron White strong- although I was using it at the beginning of treatment, I did herx, and never moved up to more than 12 drops 2x a day-

For dd, I would take 1/2 oral syringe of water, put in a cup, add the drops, suck it all back up, squirt in her mouth with syringe, and give a drink after for her to chase.

 

Not to sound dramatic, but the very first Lyme thing I ever took (before antibiotics) was 2 drops of Beyond Balance Bar-1.

Literally, within seconds, I had stabbing behind one eye, and shooting pains down my leg. That one has cats claw, always wondered if that was it.

 

Also, on dd's recent antibiotic break, I found OLE to be very good- that could have been working on viruses. But I have heard OLE taken with antibiotics makes the antibx less effective.

 

So yes, I found those tinctures to be potent.

As for Cowden, I have only used the Burber and Parsley, 10 drops of each together, used for herxing. Seems to help.

 

So do both of these naturals only come in drops? Do they have a taste? I'm afraid my kids won't take it if they can taste it. They will swallow horse pills, so long as they don't have to taste the medicine.

[momcap]

I spoke with an adult who swears her Lyme was cured with Samento, it's Cat Claw but with some properties removed - not sure of the details.

We are just starting with ABX and I wanted to try that first before overloading DD's system. It must be so upsetting to be going through this again.

 

I wanted to go the more conventional route first as well. I'm not sure I'm ready to jump ship for DS8 & DS5 yet because they have been helped so much by antibiotics. Even with DS8's current set back I'm not sure if I should change course completely, or just ask our LLMD for some adjustment(s). Before lyme treatment he had never in his whole life had 9 months in a row of mental well being, so I know we have been doing something right. What a blessing it was to see his real personality and to watch him succeed! Sure, it's easy to feel discouraged just now, but I'm working hard to keep a positive attitude. We've made HUGE progress, and we're not giving up!

 

But for DS7 abx are no longer an option, and he's still not well, so I have to figure out something.

[JuliaFaith]

The biggest thing I hear you saying is that you 'have a gut feeling.' I have followed my gut feeling and it has been the best route for my son. Don't ignore it.

 

We started with a combo of prescrip/natureopathic/homeopathic, and it has been the best thing for my son. He never had any success on abx before with PANDAS treatment and this was the best 'lyme literate' (Natureopathic Doctor) doctor that I came upon when searching on the internet, in our area. It has been the best choice I could have made for my son's treatment. He had horrible stomache pain as one of his many symptoms from day one. Did not know at the time that abx can make that worse, just followed my gut and it led me in the right direction.

 

Now, after 18 months of treatment, my son has his HLA type done and I find out that because of his genetic make-up he would not respond well on abx alone (per Dr. S.). I would have never thought about this or known about any of it, if I had not followed my gut. We are still amazed at how lucky my son and his treatment has been. It has been expensive. If you decide to go in a more natural direction, ideally it would be great to find a doctor that practices using all types of meds/supplements so your child can benefit from everything that is available, not just one type of medicine. You need the best care possible for the multiple components of what you are dealing with.

 

Sending you healing wishes for your family, I know you will do what is best.

[SSS]

I did find Byron White strong- although I was using it at the beginning of treatment, I did herx, and never moved up to more than 12 drops 2x a day-

For dd, I would take 1/2 oral syringe of water, put in a cup, add the drops, suck it all back up, squirt in her mouth with syringe, and give a drink after for her to chase.

 

Not to sound dramatic, but the very first Lyme thing I ever took (before antibiotics) was 2 drops of Beyond Balance Bar-1.

Literally, within seconds, I had stabbing behind one eye, and shooting pains down my leg. That one has cats claw, always wondered if that was it.

 

Also, on dd's recent antibiotic break, I found OLE to be very good- that could have been working on viruses. But I have heard OLE taken with antibiotics makes the antibx less effective.

 

So yes, I found those tinctures to be potent.

As for Cowden, I have only used the Burber and Parsley, 10 drops of each together, used for herxing. Seems to help.

 

So do both of these naturals only come in drops? Do they have a taste? I'm afraid my kids won't take it if they can taste it. They will swallow horse pills, so long as they don't have to taste the medicine.

 

** Yes, they are only drops/tinctures, cannot be mixed with juice or 'hidden'. The drops with a little water shot down the throat with an oral syringe has worked for me- and a low sugar sip of a juice box given right after (she doesn't get juice boxes otherwise)

No, they don't taste good.

And maybe I get away with it like this would be because I've done liquid supps (and powdered probiotics) like this for years, but danced a jig when she finally got down swallowing caps 3 years ago.

[KaraM]

I don't have experience on those, but I my LLMD recently felt my symptoms were mild enough to take me off Metronidazol and put me on Banderol and Samento, two herbal tinctures. I have been taking them for several weeks. I have had no adverse reactions at all.

 

Here's a link to one article about it...http://www.townsendletter.com/July2010/sapi0710.html