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Does Diet Help Lyme? Also Recommendation for Books on Lyme


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Hi, I am new here. We were treating my dd for PANDAS, but her IGENEX test came back positive for co-infections and Western Blot had band 41+ and band 39 IND, so we are scheduled to see an LLMD next Wed. Last night when I was on Amazon, I saw a book that recommended a specific diet for Lyme disease. Has anyone tried it? Are there dietary recommendations for children with Lyme? We are already on a gluten/dairy (casein) free diet due to Aspergers. We avoid food coloring/artificial colorings/flavoring/preservatives etc. I am considering trying to go sugar free (with stevia or natural replacements).

 

Also, I have been reading the posts on this board (which are so helpful), and researching the web as well, but I was wondering if anyone could recommend a good book on Lyme for a newbie?

 

Thank you!

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Most kids with Lyme have some type of food sensitivities.... common is dairy/gluten so diet restriction can be helpful. Sorry, I have not read the book you mentioned.

 

I am wondering if you have seen the following website: www.lymeinducedautism.com My girlfriend's son was on the cusp of being diagnosed with Asperger and almost all his symptoms have resolved with Lyme treatment. He is almost 8 and he was treated for PANDAS originally and regressed at the 8 week mark post hdIVIG each time. Just prior to his third hdIVIG they checked for Lyme and found Bartonella and Ehrlichiosis. He has been treated for Bartonella since last June. It has been nothing short of a miracle for my girlfriend's son. He has been treated for PANDAS/Lyme since Oct. 2009. Its been very rocky treatment process but he continues to make advances with predominately short term memory and learning issues that are associated with Lyme as his remaining symptoms and are also anticipated resolve.

 

Who will be your LLMD, are they ILADS trained? Where are you located? I think having an LLMD with specific experience with ASD/Lyme would be tremendously helpful for your daughters recovery.

 

-Wendy

Edited by SF Mom
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In the book, "The Lyme Disease Solution," it is recommended that people with LYme Disease follow an inflammation diet, or one that omits foods that are knows to cause inflammation and to include foods that tend to help with inflammation.

 

There were a lot of recommendations but the main thing was to avoid sugar, simple carbohydrates, and milk products and well as to include things like almonds, and flax seed, and organic meats, etc.. It had a lot of suggestions as to food choices. I downloaded the book from Amazon on my laptop's free version of Kindle. I like it because I can search with keywords, etc.

 

My dd (and I) has cut down on sugar a lot but she is not eating a strict diet. She has enough issues in her life and to try to make her stick to a diet like that would feel like adding insult to injury. She struggles enough already. I do try to add things in a way that she won't really notice, like I make her favorite homemade granola and add flax seed, almonds, sunflower seeds, to it and she loves it on yogurt.

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I loved the book "Cure Unknown" by Pamela Winetraub. Its not a "how to cure" book or even specifically about kids, but I've found it tremendously helpful to have an overall perspective on Lyme and the history of the controversy over it.

 

It sounds like you are on a great diet for Lyme treatment already, but I think sugar-free can also be tremendously helpful, especially for these kids who are on antibiotics. I use Xylosweet for baking (natural sugar substitute you can find at Wwhole Foods).

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Most kids with Lyme have some type of food sensitivities.... common is dairy/gluten so diet restriction can be helpful. Sorry, I have not read the book you mentioned.

 

I am wondering if you have seen the following website: www.lymeinducedautism.com My girlfriend's son was on the cusp of being diagnosed with Asperger and almost all his symptoms have resolved with Lyme treatment. He is almost 8 and he was treated for PANDAS originally and regressed at the 8 week mark post hdIVIG each time. Just prior to his third hdIVIG they checked for Lyme and found Bartonella and Ehrlichiosis. He has been treated for Bartonella since last June. It has been nothing short of a miracle for my girlfriend's son. He has been treated for PANDAS/Lyme since Oct. 2009. Its been very rocky treatment process but he continues to make advances with predominately short term memory and learning issues that are associated with Lyme as his remaining symptoms and are also anticipated resolve.

 

Who will be your LLMD, are they ILADS trained? Where are you located? I think having an LLMD with specific experience with ASD/Lyme would be tremendously helpful for your daughters recovery.

 

-Wendy

 

Hi Wendy, I have been on the lymeinducedautism website (another member of this board had mentioned a possible connection and I googled it). I need to go back and read more, but it is very interesting! My daughter also tested positive for Bartonella and Ehrlichosis like your friend's son. I am so happy to hear about the progress he is making.

 

We are in MA. The LLMD we will be meeting with is Dr. M. in CT. When I e-mailed ILADS for recommendations, they gave me 2, Dr. J in CT (who I've heard is wonderful, but unfortunately not an option due to our budget) and Dr. M. I also received 2 other recommendations for Dr. M as well. If you don't mind me asking, where are you located? Do you know who your friend is using for her LLMD?

Edited by momoflivy
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We are in Northern CA and we have two fantastic LLMD in our area. My girlfriends son is being treated by a Dr. S in San Francisco... He has done a ton of writing on chronic Lyme and made the association with the CD57. Test is often referred to as the the Stricker CD57 test.

 

-Wendy

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We do a food blog too, not a book, and we started it for PANDAS when we thought that was the "be all, end all" dx for us. I've noticed a lot of improvements though. The link is in my signature if you want to check it out. We're a mix of various things- GAPS/SCD, Feingold, Body Ecology, Nourishing Traditions, and low glycemic. We don't do refined sugar, gluten, anything artificial... etc.

 

I don't really explain too much there (yet, I'm so behind on what I want it to be, versus what it actually IS) but there are some recipes that might work for you.

 

Manda

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Yes, diet can be important. Food allergies/sensitivities need to be addressed in some form or fashion, and avoidance can be important, although taking steps to eliminate the allergies is powerful as well.

 

I have heard very low fat can help, the bugs use the fats. I have heard high protein can help. With lyme almost always (or maybe just always?) there will be severe fungal infection, and no sugar no sweets no fruits etc can really help with that situation. Restriction of carbs may even be necessary for a while, I ate very low carbs in the beginning stage of treatment, for a few months. As a vegan, this was extremely difficult, but I think worthwhile. Really depends on how bad the fungus infection is.

 

It really is individual what will work best. I am moving along nicely in treatment and am eating plenty of fats. About 1-2 months ago, my body started demanding much more protein, in form of foods and supplements, so I am giving it that. I am a vegan and so high protein pretty much goes hand in hand with high fat, and lately I have even added the fake meat junk foods for their protein content.

 

Not aware of any books on lyme diet, but Cure Unknown is excellent for background on the disease and political/insurance/medical situation surrounding diagnosis and treatment.

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I've only read two books so far on lyme, "Cure Unknown" and "Healing Lyme..." by Stephen Buhner. This book is great for information on natural herbal healing treatments for lyme but does not go into diet. It does sound like you are on a very good diet for lyme patients. I've basically heard what the others have already said. Plus with the addition of antibiotics, low sugar and carb is always best to help prevent candida. We do a VERY POOR job at this at our house. I hope to do better.

 

Welcome and I am sorry you find yourself here but I KNOW you will find help.

 

Susan

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