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Posted by mich (Member # 22330) on :
My adult daughter has had all the standard treatment for Lyme such as many years of antibiotics, both oral and I/V, which have not relieved her symptoms.

She recently started on a gluten free diet to see if that would help and it appears she is having a herxheimer reaction. She is having severe headaches which she used to get while on antibiotics.

Has anyone ever had this kind of reaction when starting on a gluten free diet?

Thank you for your help.
Posted by Keebler (Member # 12673) on :
She is so very lucky to have you scout out this matter for her.

And so sorry to hear she's feeling so miserable.

I don't see any way that stopping gluten would cause a herxheimer reaction (absence of gluten won't kill spirochetes and that's the definition of a herx).

A more nuanced "herx" interpretation would be that less of a quick sugar supply (if the gluten had been in simple foods, not whole grains) could be that with less simple sugar the spirochetes are, in fact, irritated and would spew more toxins.

My first thought is that she may be experiencing low blood sugar reactions and that can be really miserable.

First question: GLUCOSE LEVELS? Stability is the issue as much as levels, though. Even levels. Ups and downs can cause havoc.

Does she have a glucose meter . . . can she check her blood sugar levels at the times she feels worse?

How is she going about being gluten free? That can trip up the best of us. Some try too harsh an approach with low calorie and even too strict of a definition of low carb. It really should be HIGH CARB -- but the right kinds, all complex.

What I wonder, though, if she is getting enough other foods in the complex carb category. Where there was wheat, is she now eating good quinoa, wild rice, brown, red or black rices . . . millet . . . amaranth, buckwheat groats . . .

and certified GF oats (they must be in a closed bag / box that is CERTIFIED GF as oats often are cross contaminated.

Maybe 5 or six bites, up to abbout 1/3 cup of a whole grain like food to about 2 cups of veggies, four ounces protein and some good oil.

The biggest mistake I made was cutting out all grain like foods when I first dropped gluten. My blood sugar dropped like a rock and so did I. I passed out a lot and felt so very sick because I was not getting enough longevity in my food.

Vegetables were not enough to carry me through for hours, even with good protein and good fat. I really needed the glucose longevity of grain like foods with vegetables.

2. Not enough food in stomach to help manage antibiotics?

3. Is she getting any new foods / food additives that she is not used to?

4. Other variables? Any new Rx - or even any new textiles in the home, scents, etc.?

[ 04-14-2016, 03:21 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Back to other reasons for the headaches. While I'm sure it's not a herxheimer (as the definition of a herx is due to killing of spirochetes) there could be good reasons while stopping gluten could cause headaches or other issues.

And, indeed, if she feel awful, that's certainly something to take seriously with the detective work.

Also, while avoiding gluten won't kill spirochetes, any disturbance in their world can cause them to be irritated and they could spew out more toxins. So, while not killing (as with a herx), the irritation factor might be in the herx neighborhood, so to speak.

I'm also sure the body goes through withdrawal of sorts when it's used to certain substances and then they are taken away.

You might check out the Celiac websites for more detail about this.

Staying hydrated is also key. I sure hope she finds the key here so that she can feel better soon.

Going gluten free should be a freeing experience. Once I got enough food in me, it sure helped reduce pain. Good luck to her.
Posted by Keebler (Member # 12673) on :
There are several good leads with a search at Google for:

"gluten withdrawal"
Posted by Keebler (Member # 12673) on :
Anytime someone with lyme feels awful, even if perhaps not technically a herxheimer, for any reason that lyme might be flaring,

these supports can still soothe and offer some relief.

When the body is stressed from changes, the liver can be going through some adjustments, too. So be sure it's taken care of.;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
Posted by mich (Member # 22330) on :
Thank you all for your prompt replies. This all makes so much sense especially about her glucose level dropping from eliminating carbs. I am going to have her test her glucose levels as my husband is a diabetic and he has a monitor. This is such a great site for common sense information that you can't always get from the physicians.

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