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Posted 11/13/2012 11:13 PM (GMT 0)
I was following Stephen Buhner's herbal protocol and within a year I was completely symptom free of Lyme. However, 6 months into that protocol I started developing symptoms of Celiac disease and was eventually diagnosed with that as well.

I have been having horrid malabsorption and malnutrition issues lately. I've only been able to eat white rice, white potatoes and seeds without searing pain in my gut for almost 2 months. Turns out it is because of the herbs from my Lyme protocol. Apparently, it is near impossible to find herbs and supplements that are completely gluten free (most even labeled "Certified Gluten Free" still have trace amounts I react to due to manufacturing processes/cross contamination). I am so highly sensitive to trace amounts that I basically can't have anything processed at all.

I also started to wonder if me following an herbal protocol–whose goal is to put the immune system into overdrive–was what put the wheels into motion for autoimmune diseases I was genetically predisposed to. (mom's entire side everyone has an autoimmune disease)

Anyway, met with a new Lyme doc yesterday. She thinks I absolutely must stop the herbs (which of course I did upon realizing their gluten content and how dangerous it is for me to be putting my immune system into overdrive having several autoimmune conditions) and wants to start me on antibiotics. I feel like turd right now but I'm 100% sure it's mostly the gluten still working its way out of my system. So I'm scared to go into antibiotic hell when all my lyme symptoms have been mostly so quiet (shoulder pain returned after taking abx for suspected SIBO 3 weeks ago, but that's been about it).

I'm struggling a little because I'm scared I'm just going to make things a thousand times worse and never get better on antibiotics, feel like the vast majority of my problems right now are celiac and I need to let that work it's way out, but I'm trying to trust my new doc. She has both Lyme and Celiac disease as well, so that's comforting. But we have completely polar opposite views on nutrition. I've been a vegetarian for 12 someodd years and she is one of those that thinks that EVERYONE absolutely needs meat. I'm having to add it back in my diet anyway because I still can't digest anything else right now (thanks, gluten) but I'm seeing it as a temporary thing. She also rolled her eyes a lot when I mentioned Stephen Buhner's protocol and said that she is a registered herbalist and still thinks that herbal protocols for lyme do not work at all. She also said that andographis (one of the main herbs in the protocol) is HORRIBLE for the stomach on long term use.

I'm thinking in the very least I should delay starting abx for a week or so until my glutening symptoms pass, so when I try to add fruits and veggies back in I can tell for sure if I'm still having malabsorption issues. I'm afraid if I'm on abx I'll be in all kinds of pain and won't be able to differentiate whether I'm reacting to fructose or the abx.

Thoughts? Opinions?
Posted 11/14/2012 1:23 AM (GMT 0)
Sounds like you have a pretty complicated situation and it is good you found someone who understands both Lyme & celiac. I have found that one of the hardest things in dealing with this disease is that it seems that we hardly ever get to deal with just one thing at a time.

My thoughts and experience - herbals are another tool but can also have side effects. On my journey to find a Tx regimen that I could tolerate and would work for me we worked through about 5 combinations of abx plus herbals. Through that process we learned how sensitive my system is so I often start things now at half dose and work up to full dose over a few days to a week before adding anything else in new whether it is new herbal or a new abx so if I start reacting I can figure out what is causing it.

Best wishes to your getting your stomach calmed down and sorting it all out.
Posted 11/14/2012 1:42 AM (GMT 0)
Hi aquaholical,

Glad to hear you had good results with Buhner's protocol but sorry about the Celiac disease.  Were you detoxing while taking the herbs? 

Anyway, before you make a decision on what to do, why not wait until you get the gluten out of your system?  Abx scare me (that's my personal opinion based on my own experience as well as others).  I still never met anyone who became well and stayed well using abx.   Yet I have met people who stayed well using alternative medicine.

Before I went on Dr. Jernigan's protocol I did try Nutramedix Samento and it did nothing for me but that was all I took and at that time I knew nothing about detoxing and diet...

I view herbs like everything else..  There are good herbs and not.  The reason I chose Dr. Jernigan's botanicals years ago was because he grows them himself, harvests them and tests them.  So I knew what I was getting, not some herbs that were sitting on a shelf for a long time.  

Have you read Dr. Jernigan's book "Beating Lyme"?   Even if you don't follow his protocol, the book has so much information in it.   One can really learn so much!

As far as this doctor saying that everyone should eat red meat, duh, I don't agree.  I don't even trust red meat these days (pink slime and all that)...   Anyone could be certified in any career but that doesn't mean they know what they are talking about...  I met hair dressers who ruined my hair!  LOL!  But they had their licenses.  So licenses and certifications don't impress me.  

Razzle said something years ago that still sticks in my brain:  "Even rectal thermometers have degrees"  scool smilewinkgrin scool Trust your own instincts.. 

Wish I could be of more help,

Denise

Posted 11/14/2012 6:52 PM (GMT 0)

Deejavu said...
Hi aquaholical,
Glad to hear you had good results with Buhner's protocol but sorry about the Celiac disease. Were you detoxing while taking the herbs?

Anyway, before you make a decision on what to do, why not wait until you get the gluten out of your system? Abx scare me (that's my personal opinion based on my own experience as well as others). I still never met anyone who became well and stayed well using abx. Yet I have met people who stayed well using alternative medicine.

Before I went on Dr. Jernigan's protocol I did try Nutramedix Samento and it did nothing for me but that was all I took and at that time I knew nothing about detoxing and diet...

I view herbs like everything else.. There are good herbs and not. The reason I chose Dr. Jernigan's botanicals years ago was because he grows them himself, harvests them and tests them. So I knew what I was getting, not some herbs that were sitting on a shelf for a long time.

Have you read Dr. Jernigan's book "Beating Lyme"? Even if you don't follow his protocol, the book has so much information in it. One can really learn so much!

As far as this doctor saying that everyone should eat red meat, duh, I don't agree. I don't even trust red meat these days (pink slime and all that)... Anyone could be certified in any career but that doesn't mean they know what they are talking about... I met hair dressers who ruined my hair! LOL! But they had their licenses. So licenses and certifications don't impress me.

Razzle said something years ago that still sticks in my brain: "Even rectal thermometers have degrees" [img]/community/emoticons/scool.gif[/img] [img]/community/emoticons/smilewinkgrin.gif[/img] [img]/community/emoticons/scool.gif[/img] Trust your own instincts..

Wish I could be of more help,
Denise

Hey Denise. Thanks for the response! Yes, I was detoxing like crazy when I was on the protocol. And no, I haven't read Dr. Jerigan's book, but I will definitely check it out. That's comforting to know that he grows the botanicals himself. I really wanted to stick with the herbs since they worked so well and am tempted to switch to Herb Pharm herbs (they are 100% safe as far as gluten goes), but I'm worried about following any treatment plan that super boosts my immune system when I'm predisposed to autoimmune conditions.

Something in my gut (not gluten ;-P ) has me hesitating big time with everything. I'm glad I was so skeptical though because I called the manufacturer of the abx my doc rx'ed (flagyl) and sure enough, they are manufactured in a facility that also processes gluten. Meaning I CAN NOT have this particular abx (some celiacs can handle those trace amts, I can't). Also reached out to the non-generic version to see if it's the same case with them. If it is, there's a possibility that abx might not even be an option for me. I'm beginning to realize there's trace gluten in almost everything processed.

I'm thinking you're absolutely right--I should wait for the gluten to get out of my system before picking ANY course of action. In the very least I need to do that to know for sure which foods are safe to add back into my diet. If I start the abx and am in a ton of pain, it would be extremely difficult to tell which foods I'm reacting to.

And that's a very good point about licensing. ;) I have a hard time trusting anyone when they have any extreme one-sided views. Even if she was all gung-ho about vegetarians and absolutely thought meat was the worst thing I'd have misgivings. I think everyone's inner ecology is so incredibly varied that it makes no sense to take a stance that any one diet is appropriate for EVERYONE. That alone had me questioning her a bunch on the drive home.

I'll give my tummy some time to heal and see how lyme symptoms come and go. Right now it's only the shoulder pain and joint pains (hands) that's giving me hell, and acupuncture has worked wonders in the past to help that. So back to needles for the time being, methinks.

thank you again for taking the time to respond, Denise. It was extremely helpful!
Posted 11/14/2012 6:59 PM (GMT 0)

Garfield48 said...
Sounds like you have a pretty complicated situation and it is good you found someone who understands both Lyme & celiac. I have found that one of the hardest things in dealing with this disease is that it seems that we hardly ever get to deal with just one thing at a time.

My thoughts and experience - herbals are another tool but can also have side effects. On my journey to find a Tx regimen that I could tolerate and would work for me we worked through about 5 combinations of abx plus herbals. Through that process we learned how sensitive my system is so I often start things now at half dose and work up to full dose over a few days to a week before adding anything else in new whether it is new herbal or a new abx so if I start reacting I can figure out what is causing it.

Best wishes to your getting your stomach calmed down and sorting it all out.

Yeah, I'm glad I at least learned from my doc how bad andographis is long term. Thanks for the reply!
Posted 2/3/2014 5:52 PM (GMT 0)
Hi,

How are you doing now? Stephen buhner protocol helped you clear away the symptoms? How is your chrons disease. Have you tried coffee enema? It may be helpful. Also I think Fecal bacteria therapy will help for this problem.

Thanks
SG...


aquaholical said...
I was following Stephen Buhner's herbal protocol and within a year I was completely symptom free of Lyme. However, 6 months into that protocol I started developing symptoms of Celiac disease and was eventually diagnosed with that as well.

I have been having horrid malabsorption and malnutrition issues lately. I've only been able to eat white rice, white potatoes and seeds without searing pain in my gut for almost 2 months. Turns out it is because of the herbs from my Lyme protocol. Apparently, it is near impossible to find herbs and supplements that are completely gluten free (most even labeled "Certified Gluten Free" still have trace amounts I react to due to manufacturing processes/cross contamination). I am so highly sensitive to trace amounts that I basically can't have anything processed at all.

I also started to wonder if me following an herbal protocol–whose goal is to put the immune system into overdrive–was what put the wheels into motion for autoimmune diseases I was genetically predisposed to. (mom's entire side everyone has an autoimmune disease)

Anyway, met with a new Lyme doc yesterday. She thinks I absolutely must stop the herbs (which of course I did upon realizing their gluten content and how dangerous it is for me to be putting my immune system into overdrive having several autoimmune conditions) and wants to start me on antibiotics. I feel like turd right now but I'm 100% sure it's mostly the gluten still working its way out of my system. So I'm scared to go into antibiotic hell when all my lyme symptoms have been mostly so quiet (shoulder pain returned after taking abx for suspected SIBO 3 weeks ago, but that's been about it).

I'm struggling a little because I'm scared I'm just going to make things a thousand times worse and never get better on antibiotics, feel like the vast majority of my problems right now are celiac and I need to let that work it's way out, but I'm trying to trust my new doc. She has both Lyme and Celiac disease as well, so that's comforting. But we have completely polar opposite views on nutrition. I've been a vegetarian for 12 someodd years and she is one of those that thinks that EVERYONE absolutely needs meat. I'm having to add it back in my diet anyway because I still can't digest anything else right now (thanks, gluten) but I'm seeing it as a temporary thing. She also rolled her eyes a lot when I mentioned Stephen Buhner's protocol and said that she is a registered herbalist and still thinks that herbal protocols for lyme do not work at all. She also said that andographis (one of the main herbs in the protocol) is HORRIBLE for the stomach on long term use.

I'm thinking in the very least I should delay starting abx for a week or so until my glutening symptoms pass, so when I try to add fruits and veggies back in I can tell for sure if I'm still having malabsorption issues. I'm afraid if I'm on abx I'll be in all kinds of pain and won't be able to differentiate whether I'm reacting to fructose or the abx.

Thoughts? Opinions?

Posted 2/3/2014 6:53 PM (GMT 0)
Aquaholical I feel for you, my sister has been battling celiac since last March, she has been deathly ill and still is trying to figure out why she is so sick with it. She can't even breath it when somebody is cooking it or smell it driving by where there are a lot of restaurants.

Glad you found a doctor who has had both Lyme and celiac. Good luck with your healing and keep us posted.
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