Diarrhea/C.Dif/Antibiotics

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Hope65
Regular Member


Date Joined Oct 2008
Total Posts : 59
   Posted 7/11/2012 11:19 PM (GMT -6)   
Hoping to get some opinions from you smart cookies! (sort of a gross topic though! Sorry!!):
 
My ILADS trained naturopath diagnosed me with Lyme (and also thinks that I have coninfections as well based on symptoms) in April.  She has been "prepping" me for antibiotics since then (detoxing routines, probiotics, etc.).  I asked her last week when I would get to start antibiotics and she said not until I no longer have diarrhea.  I have had it 4-10 X's everyday for the past 6 years and it is as thin as water.  Since beginning the probiotics it is down to 2-4 X's per day but still pure liquid. I'm scared it will never be normal and she won't want to treat me.  She says that with the way things are now, that she would not be able to tell if the antibiotics were to cause C-Dif.  She seems very knowledgable and I trust her, but I am getting frustrated!  What would you all do in this situation?
 
Thanks!!
 
 

PennyPru
Regular Member


Date Joined Jul 2012
Total Posts : 149
   Posted 7/11/2012 11:35 PM (GMT -6)   
Dear Hope, Wow! You've had diarrhea for 6 years? Poor Love! That's really tough.

Have you been properly tested for Celiac Disease? CD can cause a lot of similar bizarro symptoms to Lyme. I know way too much about CD from personal experience in my family and my younger daughter. Just like LD the blood tests are not 100% accurate. To get properly tested you'd need to have an endoscopy and have your small intestine biopsied. It's a same day procedure covered by insurance, esp in light of the fact you've had diarrhea for such a long time. You have to be eating gluten for the test to be accurate.

The good news is that if you do have CD it's completely corrected and healed by following a strict Gluten free diet. It's challenging but possible. My family lived gluten free for 3 years.

Additionally, based on all I know about immune system function, someone could develop a strong gluten sensitivity (and not full blown Celiac) due to Lyme disease, because LD decreases immune function and can trigger other auto immune diseases. If you do have LD I can't help but wonder if you also have Celiac or compromised gluten tolerance due to Lyme?!

I hope this helps. Good luck figuring this out. I could be totally wrong, but if I were in your position and given your past digestive history, I'd want to rule out Celiac.
Penny

Never give up, for that is just the place and time that the tide will turn.
Harriet Beecher Stowe

PennyPru
Regular Member


Date Joined Jul 2012
Total Posts : 149
   Posted 7/12/2012 12:11 AM (GMT -6)   
OMG, Honey! So sorry. I just looked at a post you wrote in June about your IgA level. I didn't realize you DO have CD. Ok, the thing I'd want to know for sure .... is the probiotics you are taking completely without a shadow of a doubt GF? many still have hidden sources of gluten in them. Jarrow brand was the only one we found to be easily available locally AND GF. They make some that are totally GF.

Can you do dairy? If so, could you make your own yogurt? I bet that would help restore your gut flora and get you to a plce where your diarrhea may stop (as long as you don't have dairy issues AND you truly are 100% gf). Let me know if you're interested and I can share how I make mine and my machine type etc.

We used to go out to a few places that followed what we thought were strict GF policies, but we always had issues after eating out.

Are you sure your diet is completely GF?

Gosh, I'm sending you a BIG HUG as I can only imagine all that you've gone through with the CD diagnosis and the dietary changes ... and now Lyme? Bless your heart!

Email me privately if you want to talk about more GF stuff. I'm on an amazing board for CD and they may be able to help you with your June question, if you haven't found an answer.
Penny

Never give up, for that is just the place and time that the tide will turn.
Harriet Beecher Stowe

Hope65
Regular Member


Date Joined Oct 2008
Total Posts : 59
   Posted 7/12/2012 12:37 AM (GMT -6)   
Thanks so much for your reply Penny! You get an A+! I do have celiac but have been gluten free for 6 years (sorry - should have mentioned that!) My doctor and the specialist ( I think she's a gastroenterologist?) believe that I have refractive celiac - symptoms persist regardless of a gluten-free diet. What is quite coincidental is the bite I remember (that I assumed was a spider bite), was approximately 6 years ago as well. Interestingly, this all happened when I was emotionally (and physically) drained as my 12 year old son passed away 6 1/2 years ago. It's crazy what effects stress can have!

Not sure if this is true, but my naturopath (Dr. T) said that there are people with Lyme who are free of symptoms (or minimal) because their immune systems are in good shape! Do you think their is any truth to that?

Anyway, I just don't know what to do about the Lyme if I can't get rid of the diarrhea. I'm thinking that at some point I might have to chance it......although I don't know if Dr. T will give in. Hard to weigh the risks vs the possible gains. Thanks for letting me vent......Noel

Hope65
Regular Member


Date Joined Oct 2008
Total Posts : 59
   Posted 7/12/2012 12:58 AM (GMT -6)   
Too funny - we were writing at the same time! My anti-transglutaminase levels are still very slightly elevated. I am not sure if that is from the occassional gluten accident in restaurants or if I'm missing something at home. I'm very careful. I might have to go to purely whole foods to make sure, the diarrhea is not related to gluten.

I do know that my probiotics are gluten free - it's right on the label. Would home made be better?

Thanks for all of your time Penny. I appreciate your input.

Carrie48
Veteran Member


Date Joined Mar 2010
Total Posts : 638
   Posted 7/13/2012 8:14 PM (GMT -6)   
Hope:

It is true that there are people with Lyme that don't know it. I'm sure that I've had it for MANY years but it wasn't until I had my gallbladder removed that my symptoms started in full force. Because of the stress/trauma of the surgery, the lyme flourished and there came my symptoms. It was very scary.

I hope you get better better soon. It sure sounds like you have already made a ton or progress though. I would personally go to a whole food diet just to be sure though. Make all your own foods. I still don't trust restaurants even if they say it's "gluten free". I don't have CD but I did go a year GF.

Good luck to you!
DX with Lyme and Erlichosis in January 2010. January-August: Biaxin and Amoxicillian. September 2011 - ? on Rifampin and Zithromax. Symtpoms mostly neuro and have 20 small lesions on brain.

PennyPru
Regular Member


Date Joined Jul 2012
Total Posts : 149
   Posted 7/13/2012 11:50 PM (GMT -6)   
Hi Hope, I'm so terribly sorry for your loss of your son, and now for all that you are dealing with your health. Yes, stress and emotion plays an enormous role in our health. I do totally believe some people recover from Lyme without treatment. I don't think that it's that they have exceptional immune systems though, I think it's possible for anyone.

I have had LD for at least 6 years and until this recent reinfection my body was able to create a new normal for myself without treatment. The only quirky thing remaining is my high blood pressure issues.

I was very sick 6 years ago. Bedridden with fibromyalgia, severe panic attacks, carpal tunnel in both wrists, migraines and a terrible dark depression. I also lost my twin pregnancy. I was never tested for LD despite having a bizarre round rash on my side.

The point of me sharing that with you is that I believe our body's have a remarkable wisdom. to take us in a direction for the good of our existence, to help us heal and create a new normal. I believe if we have pain or disease, it is there for a purpose, not just due to an infection. In my case, my pain awakened me to how misaligned my actions were from my heart and the intentions of my life. Without prying, have you done healing and grieving work? With my own loss, this was the hardest part of my own healing, but also proved to be the key to my getting better.

When I think about your GI problems, I wonder if perhaps you would (like Carrie suggests too) benefit from doing complete whole foods diet and then slowly adding the things back in to see if you have a Gluten reaction?!

As for making your own stuff, that may be a helpful idea too, but i know it's a ton of hard work and time consuming, especially when you aren't feeling well.

The yogurt I make is really simple. I use a YoGourmet maker, but I leave the machine on for 24 hours instead of the recipe suggestion of 8. It's supposed to increase the amt of beneficial bacteria, and I can attest to that, as I had no adverse reaction on my last course of abx. I wasn't even taking pill pro-bs. It's like greek yogurt. You can strain it in a coffee filter and a sieve if it's too runny for you, and then use the whey (the thin white liquid that separates from it) in other recipes. Some folks soak their rice in it before they cook it. Whey is high protein high pro-b super food! You can add honey and pureed fruit to the yogurt and it's really so delish! Always use organic pasterized (not ULTRA pasteruized) milk. The hormone levels are healthier this way.

I hope this helps. Let me know if I can do anything to help you or if you have any questions or want to venture into the yogurt. It may help your body, as long as you don't have issues with dairy of course.

Take care of yourself and I'm sending you positive thoughts for your healing journey.
Penny

Never give up, for that is just the place and time that the tide will turn.
Harriet Beecher Stowe

achievinggrace
Veteran Member


Date Joined Nov 2009
Total Posts : 2326
   Posted 7/14/2012 1:25 AM (GMT -6)   
Hello Hope,

Have you considered treating the Lyme disease with herbal treatments? There are many members here that have gone that route because of the problems they have with their GI tract.

My concern is that the Lyme itself is causing your digestion problems and that by not treating it you will end up in a bigger boat load of problems.
Co-Moderator Lyme Disease Forum

Hope65
Regular Member


Date Joined Oct 2008
Total Posts : 59
   Posted 7/27/2012 2:04 PM (GMT -6)   
It was brought to my attention that I missed some of these responses.....so sorry! Thank you Penny and Achievinggrace for your input. I will try whole foods only and I have made an appointment for a phone consult with my NP for next week to discuss non antibiotic treatment options.

Penny - thanks for your positive input. I have not grieved properly about the loss of my son. The grieving should have begun when he was a baby as my husband at that time shook him when he was crying and left him with severe multiple disabilities. I left my husband and looked after my children on my own and there was no time or strength to grieve. Jordie had so many medical problems to deal with and I had to work to support my kids.....in fact I didn't even get child support because God dealt his own judgement and my ex died from leukemia a few years later. I think I developed adrenal fatigue during this time. Amazingly, my health did not go down hill until after Jord passed away......don't know how I would have done it, had I been sick through those years. For that, I am truly thankful!

Well, I apologize for going on about my personal stuff, you really don't need to be bothered with my problems, but maybe I'm trying to grieve but don't quite know how to do it. Sometimes I wonder if God is handing me a judgement too (crying now).....do any of you question WHY??!!

tickssuk
Regular Member


Date Joined Jul 2012
Total Posts : 64
   Posted 7/27/2012 2:34 PM (GMT -6)   
Hope 65, I'm so sorry to hear of your loss. I hear there is no greater pain than losing a child. My mother & father in law lost a 5 yr. old son 35 yrs ago,then they lost their only daughter, age 30, to suicide 7 yrs ago. I wonder all the time how they get through life! Now my father in law is in a nursing home & doesn't know his own family.
My husband, who has been very ill with Lyme & co-infections for 6+ yrs. occasionally asks "WHY"??  Why is he so sick with this disease, why did his only sister take her own life,, why wont the Lord take his dad as he is really no longer with us,...and now why did his wife have to have Lyme/co-infections??
I think that's just human nature to ask "why". It surely doesn't seem fair.  It gets to a point sometimes where the hubby actually resents "healthy" people!!  He gets over it quickly though.
I feel for you with all that you went through & are still going through. It's cheesy but I always remeber that saying--"If God brings you to it, He will bring you through it"
Hugs & take careā™„
Instruction does much, but encouragement everything.

Hope65
Regular Member


Date Joined Oct 2008
Total Posts : 59
   Posted 7/27/2012 4:09 PM (GMT -6)   
Oh tickssuk, I'm sorry that you, your husband and his family have had to endure so much! Life isn't fair sometimes, but I guess all we can do is try to keep going and try to keep positive - easier said than done some days!  I try not to ask the WHY, but sometimes, I just can't help myself.  Please know, and tell your husband too, that my thoughts are with you and wish you both a speedy recovery (as speedy as it can be anyhow). Hugs.....Noel

Hope65
Regular Member


Date Joined Oct 2008
Total Posts : 59
   Posted 7/27/2012 9:20 PM (GMT -6)   
WWJD: Thanks for the support and I totally agree that we can all be so thankful for sites like this one and the opportunity to share like we do. Today has been a difficult day for me - thanks to those of you that helped pick me up!

WisconsinGardener
Regular Member


Date Joined Jun 2012
Total Posts : 102
   Posted 7/28/2012 9:27 AM (GMT -6)   
Have you ever heard of the Specific Carbohydrate Diet?

http://www.breakingtheviciouscycle.info/

The gist is that "gluten free" is still not the appropriate diet for many with Celiac Disease and other digestive issues. Also, the commercial "gluten free" have many ingredients that some people just can't tolerate. I take care of a woman with extreme Celiac Disease. Her poor digestive system can't handle most commercial gluten free products, so I bake for her - usually with almond flour.

Hope65
Regular Member


Date Joined Oct 2008
Total Posts : 59
   Posted 7/28/2012 11:25 AM (GMT -6)   
Thank you WisconsinGardener......I will have to check this out when I have a little more time. Thanks for your assistance!
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