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Posted 12/15/2011 5:53 PM (GMT 0)
Have any of you gone Gluten Free? If so, did you do it on your own or did your LLMD or LLND (Naturopath) suggest it?

If so, what were your results?

Thanks

Jen
Posted 12/15/2011 6:07 PM (GMT 0)
my LLMD suggested it but I have not gone gluten free - I just do not think it bothers me. I have cut back on gluten products about 80% though - no noticeable affect one way or the other.
Posted 12/15/2011 6:36 PM (GMT 0)
ps:

Being a naturopath, do you have any experience with the Byron White line of products. I am currently doing the A-L Complex and A-BAB...just wondering if you had an opinion on these. They seem to be "in vogue" these days but I was wondering how effective they really are.
Posted 12/15/2011 7:51 PM (GMT 0)
WWJD, I also went gluten free but only 5 months ago. I was never even told about going gluten free by my LLMD when I was sick.
Since going gluten free, I feel 95% better. My energy is up and I never ever have joint pain anymore.
Rice is fine for me as well.


Yazzer, I have not heard of Byron White line. There are so many products saturating the market now, it's hard to keep up. I have specific lines I use for lyme that I used on myself and recommend to my clients. I will look into this line though. thanks!
Also, it's best to be 100% gluten free, cause if in fact the gluten is damaging to you, even one bit of gluten will keep the gut in peril. For the body to heal from gluten damage, you need to eliminate all gluten. This is the only way you will notice any effect.
It's hard to be gluten free, but there are so many gluten free products and choices now, it's not as difficult.
Posted 12/16/2011 5:01 AM (GMT 0)
I as well as my two kids started gluten free diet after a naturopath suggested it for my son, because of his various problems (mood swings, rages, focus issues, various sensitivities).

We are about 99% gluten free, I usually allow something like soy sauce, or salad dressing, or from time to time breaded chicken nuggets.

When we manage to stay on the diet we get a lot less problems with irritability or inability to focus.  Our symptoms that I attribute to Lyme are mostly neurological.  I think it must be Borrelia garinii (one of the European strains) rather than B.b.sensu stricto.

 

Posted 12/16/2011 1:14 PM (GMT 0)
Yazzer, I checked out the Byron White line. The products are great, but so over-priced it's ridiculous. It seems to me this company is praying on the desperation of those with lyme to charge these prices.

Many of the ingredients in these products are common ingredients you can find in other tinctures as well.
Also, the fact that they have different tinctures for different bacteria is also strange, since it's common in Natural medicine to believe the body heals as a whole and not targeting specific bacteria. Once the immune system is stronger, the immune system attacks all bugs, so yeah. maybe I am totally off the mark, but it seems to me these products are just glorified tinctures.

There are a group of products I use for pre-lyme treatment, lyme treatment and post lyme which target the body as a whole.

Again, probably great products but super overpriced in my opinion.
Posted 12/16/2011 1:36 PM (GMT 0)
Another thing that concerns me is, many LLMD's and people who are sick, are dx lyme without any conclusive testing.

Another conditions such as Celiac (or other food intolerance), etc mimic lyme disease so you can have someone who's never seen a EM rash had a negative lyme test and they or they dr assumes they have lyme, so they take all the abx an LLMD would give or go on line and order these strong herbs and not even have lyme.

In my personal and profession opinion, if anyone is not sure they have Lyme, they need to rule out other things first and in the process, strengthen their immune system with gentler ways.
A herx does not mean Lyme is being killed, it means any other pathogen in the body are being killed.

I found another supplement site claiming their products kill lyme and how they know this is because their clients get a herx and they feel that is a true dx for lyme, It's crazy!
Any company that makes their own products touting they kill lyme, I would investigate it very well.

I sell products (to my local clients, not distant clients), but made from about 20 different manuf. and none claim they kill lyme, but rather I suggest products that work on the body as a whole.
Any good Naturopath or any Natural healer knows the first line therapy to ANY and ALL healing is to clean the gut, strengthen the organs with detox and nourish and then go in and kill the bugs.
Posted 12/16/2011 2:55 PM (GMT 0)
Thanks WWJD.....just a lot of trial and error myself on the path to healing. I heard one speaker at a conference once say "Everything works with common sense"
Posted 12/16/2011 3:57 PM (GMT 0)
I was pretty strict about being gluten free for almost a year. Recently though, I've been cheating here and there. After the holidays though, I'm going back to a very strict gluten free and diary free diet.

I had some gluten the last couple of days and I have twitching and tingling/rippling in my feet, a slight tingle in my face under my left eye...I'm kind of wondering if the gluten has something to do with it....

Also, I've been on ABX for the last year but also gluten free and made a lot of progress. I wonder if having gluten sensitivity (which I do have...not celiacs, but a sensitivity to it) can cause neuro symptoms like I am having...?
Posted 12/16/2011 4:41 PM (GMT 0)
Thanks PS - I appreciate your assessment. The price of the Byron White products run like $94 a bottle - but I only do 2-3 drops a day so they last a LOOOOONG time. I have been feeling remarkably better since starting them about 5 weeks ago BUT I have done other things as well - methylation protocol, meditation and acupuncture - so not sure what is helping and what is not. And, it could be that the abxs I am taking have made some good headway in zapping the critters. Plus, I went back to more regular running...I had been a 35-40 mile/week person before my diagnosis in June and had stopped completely for several months....now ramping back up to 10-15 miles/week. I think the running does several things that help:

1. heats up the body to kill the critters
2. oxygenates the blood to kill the critters
3. drives the blood further into the tissue to get at any critters hiding deeper in the body
4. increased endorphins so you feel well

This is a similar effect you get with an FIR sauna (which I also use). The BW tinctures claim to be immune system modulators as well so maybe that working too...who knows what is working or if it's a combination of it all, but I am really making good strides in a generally positive direction. BTW - there is no question I have Lyme - all tests positive even the ones that frequently show false negative. But, my only question is that, having had Lyme all these years, how have I escaped co-infections? All the 'standard' lLabCorp tests were negative. I have had an Igenex test run to see what it shows - will know in a couple of weeks.

Thanks again for your response.
Posted 12/16/2011 4:55 PM (GMT 0)
Yazzer:

What does the methylation protocol do? What is it for?

Thanks.
Posted 12/16/2011 4:59 PM (GMT 0)
Hi Carrie - I first heard of it from my LLMD - look at the following thread where I spoke of it on here a couple of weeks ago:

https://www.healingwell.com/community/default.aspx?f=30&m=2274320

The big thing it did for me almost IMMEDIATELY was help with sleep. So maybe just the better slepp has helped my body rally and my immune system recover.
Posted 12/17/2011 4:35 AM (GMT 0)

 

 

Peacesoul,

Most of the people in Lyme forums have already visited many various doctors and have already ruled out a lot of other things before coming to the conclusion that they might have Lyme.  Of course this too might prove to be a wrong path, but we have no choice, but to keep trying to find the reason for our  ailments.   I actually lingered in gluten-free forum for a while and had myself tested for celiac antibodies, but the blood test came back negative.

peacesoul said...
Another thing that concerns me is, many LLMD's and people who are sick, are dx lyme without any conclusive testing.

Another conditions such as Celiac (or other food intolerance), etc mimic lyme disease so you can have someone who's never seen a EM rash had a negative lyme test and they or they dr assumes they have lyme, so they take all the abx an LLMD would give or go on line and order these strong herbs and not even have lyme.

In my personal and profession opinion, if anyone is not sure they have Lyme, they need to rule out other things first and in the process, strengthen their immune system with gentler ways.
A herx does not mean Lyme is being killed, it means any other pathogen in the body are being killed.

I found another supplement site claiming their products kill lyme and how they know this is because their clients get a herx and they feel that is a true dx for lyme, It's crazy!
Any company that makes their own products touting they kill lyme, I would investigate it very well.

I sell products (to my local clients, not distant clients), but made from about 20 different manuf. and none claim they kill lyme, but rather I suggest products that work on the body as a whole.
Any good Naturopath or any Natural healer knows the first line therapy to ANY and ALL healing is to clean the gut, strengthen the organs with detox and nourish and then go in and kill the bugs.

Posted 12/17/2011 4:58 AM (GMT 0)
Misdiagnosis can go both ways as far as Lyme is concerned. There are so many of us who bounce from doctor to doctor, year after year, and are misdiagnosed with everything under the sun until we finally arrive at Lyme. Are there people being falsely diagnosed with Lyme? Probably. Ultimately it's up to the patient whether they want to take the risks associated with treating Lyme without 100% certainty - and for many, myself included, the risks of not treating it after so many years of suffering completely outweigh any other risks. Nothing is 100% in medicine, and I like to hope that every doctor who makes a diagnosis means well, even if they turn out to be wrong. Personally I spent 10 years ruling everything else out - even after I was originally diagnosed with Lyme - before putting all the pieces of the puzzle together.

As far as the Byron White line, every product is different. I have no experience with it although I have heard good things. If you really think about what antibiotics cost without insurance, the cost of supplements doesn't seem quite so high. Sometimes I think a lot of things seem overpriced because we're used to paying only a percentage. It would certainly be nice if all of our treatment options were covered by insurance, but we still have a long way to go before that'll ever happen.

Everyone has their own unique approach to healing, and every one of us needs treatment tailed to our own bodies' needs. There's really no right or wrong, or something that simply works or doesn't work - all of health and illness seems to be painted in shades of gray.

A little skepticism can be a good thing, but let's try to stay respectful of each others' choices and approaches to healing.
Posted 12/17/2011 12:11 PM (GMT 0)
I went gluten free when I got diagnosed with Gluten Sensitivity in 2005 (this was before I knew anything about Lyme). My hormone balance improved as a result (no more painful monthly cramps/migraines).

Now, I'm sensitive to airborne gluten, so I have to stay completely away from all sources of gluten exposure.

Gluten sensitivity can cause neurological issues in addition to, or instead of, GI problems. See http://theglutenfile.com/ for more info.

Anyway, being gluten-free did not make any of the Lyme-related stuff better for me... 

And I did get a CDC-positive Lyme test not from IgeneX but from Mayo Clinic's lab (my local hospital sent it there; I had no idea it was getting done at Mayo until I got the printout of the results). 

I also experience relief of "classic Lyme" migratory joint pain when I take abx, and this pain returns with a vengeance when I stop abx or when I am herxing (i.e., first starting abx, or making a dose change)...

It is easier for the whole household to be gluten-free. I'm lucky in that my Husband has been allergic to wheat since he was in high school, so he helped me to learn how to cook things without wheat/gluten.

Methylation is a key detox pathway in the liver. I believe those who herx more severely from even small doses of abx/herbs likely have methylation issues that need to be looked into. At least, this is my personal experience (a week of low dose japanese knotweed put me in the hospital fighting for my life).

Posted 12/17/2011 6:14 PM (GMT 0)
BorderLyme: no one was being disrespectful of anyone's choices? Unless I missed something?

Apple-A-Day: Gluten intolerance has no real conclusive testing. You can be biopsied for Celiac and if it comes back negative, you can still have a serious sensitivity to gluten. The only real test is to eliminate it 100% from the diet for 6-8 weeks, then re-introduce it and see if you have any reaction.
My background on lyme is pretty intense and I've seen people come here or other lyme board, or in our clinic or to my LLMD thinking they have lyme right off the bat even before ruling everything out.
Of course that's not to say many others (including myself) went from MD to MD over and over until they found out about Lyme. And even then with me, my LLMD dx with me with Lyme and I was CDC negative showing only 3-4 bands.
I knew I had something, so treated for lyme. Abx didn't help me, so I went all natural and that was the key to my healing. Everyone's journey is certainly different
Posted 12/17/2011 6:22 PM (GMT 0)
Well, that wasn't me - I assumed I had other things for at least 35 years before the Lyme light bulb finally went off! Ticks were/are a way of life in my neck of the woods so I didn't suspect Lyme in the least. Not that I could have done much more way back then.
Posted 12/17/2011 6:37 PM (GMT 0)
Sorry, peacesoul! I just meant that there are people on here using Byron White products and it might be unsettling to think that they're preying on our desperation. No one knows why things are priced as they are but I like to hope no one's out to manipulate us for a profit.

I'm so sorry if I offended you I definitely didn't mean to. I appreciate your advice and professional opinions so much!
Posted 12/17/2011 9:32 PM (GMT 0)
Oh no, no worries, not offended at all.

You're right though, those using the products could be unsettled by my comments for sure. I guess being around lyme a while, I get this knee-jerk reaction when I see companies touting specific Lyme products. I mean, it's great because I am sure on some level, they work awesome in some people, but for me, the price just seemed really steep.
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