Bloody Lymey

A Blog About Living with Lyme Disease

Gluten Free Craze

So I saw a meme on facebook today, a surly supposition about the gluten free craze and how it’s all in people’s head, having a gluten sensitivity.

Why am I writing this in a Lyme Blog?  Ohhhhhhhhhh, because!  Because we Lymies always find something on our own that makes us feel better, and many of us claim going gluten-free as a part of our success.    And sometimes it works for a little while , only a little while.  To that I say, do whatever makes you feel good TODAY.  So what if you don’t really have Celiac?  Can’t you feel better without gluten ?  Maybe, maybe not.

Once I felt SO much better after taking B-vitamins. I was in a month-long remission. It was bliss.  I hadn’t felt that good in YEARS.  I felt GREAT (read that as “GREAT” with infinite exclamation points.   Great is not the word!)  Then the feeling ebbed.  I couldn’t get it back.  I tried to think of what I ate that month, thinking perhaps it was B-vitamins coupled with something.  Maybe I had eaten more fatty acids in my diet, maybe more tomatoes each week gave me a spike in vitamin c?  I couldn’t figure it out.    I tried to figure out what happened.  I was exhausted and weak again.   I lived in a second floor apartment and I cannot begin to tell you how awful it suddenly was to just get down to my car and back up again if I forgot something .

So why do people care if people think gluten free is working for them?  Or B-Vitamins.  Or anything.  No one really scoffed in the ’80’s and ’90’s during the fat free craze — even the people who made no distinction between saturated and unsaturated fats and started to suffer from dry skin and hay-like hair.

I myself feel better when I’m off of “gluten.”  Maybe I feel better when I’ve abstained from something else – yeast?  Sugars?  I don’t know.  Maybe it’s incidental.  Maybe it’s not.

My bowels function better when I’m gluten free.  Do I adhere to a gluten free diet?  F**k no!  Ha, ha.  Not today.  Today I value my right to eat pizza and cake more than my doughy gut, my unpredictable bowels, etc.  But when the pain is great enough, I’ll try again.  I do also feel my BEST when I am 100% carb free, such as cycle 1 on the 17-day diet.  I think this may have to do with chronic candida.  I think antibiotics wreaked havoc on my gut bacteria and there  may be a permanent power struggle between everyone in there.

As an aside, there are people who DO think going gluten free is best for we Lymies, and that Celiac tests are open to debate.  Here’s an interesting article:  http://lymemd.blogspot.com/2008/05/what-does-gluten-have-to-do-with-lyme.html

 

 

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Survivor’s Guilt

A reader contacted me and asked if I was okay, adding “you haven’t posted anything in a while.”

Frankly, I have been feeling beaucoup better since January.  There have been rare days when I have felt a little achy or fatigued — I’m having some big emotional things going on now, and the fatigue has been a problem — but for the most part I’ve been okay .  This is the longest I’ve been okay.  I was more okay. I felt “restored” for nine months.  This is “pretty good” for 11 months.

I don’t know what to write.  The primary purpose of this blog is “living with Lyme disease” and if it’s not an issue then there’s nothing to write about.  Am I a fake if I keep writing?  Or is this remission?  Should I write about living with Lyme Disease in remission?  I don’t know.   Would that inspire hope in people?  Hope that it will happen for them?  Or outrage because I don’t have a magic answer as to how I got here?

I know we sit around and try to pinpoint what went “wrong.”  I’ve been trying to pinpoint what went “right.”  My summation is this:  I saw a gastro guy. I think I wrote about this recently.  I had a BAD flu 1 year ago.  Explosive diarrhea with fever.  I saw my doctor and she said if it happened again then I needed to see a gastroenterologist.  It happened again.

I had seen a Rheumatologist prior to him who dismissed me as “fibromyalgia.”  (*I believe in Fibro!  Oh YES , I do!  But I also believe it’s a catchall phrase. It’s medical speak for “I give up, so let’s name it something that cannot really be proved or disproved.” * )  Fast-forward to the gastro guy. He saw me. He asked a couple of questions and pressed on my stomach. He left the room and I heard him softly murmur a summary of “me.”  He used the word “fibromyalgia.”  Then?  “Irritable Bowel Syndrome.”  He came back with coupons for Metamucil or something.  He said he’d do a colonoscopy but he says “you have IBS.”  I wanted to cry. I asked if IBS causes fevers and he waved his hand dismissively, while escorting me downstairs to schedule the colonoscopy.  That was it.

But you know what?  I felt like a million bucks after the colonoscopy. I told him so. He asked “did a lot come out?”  I said HELL yes.  And he prescribed the prep.  I take it monthly.  I start getting a bit creaky if I skip a month — by month 2 I’m starting to feel achy.

So my problem started with a tick that I don’t remember and it ended with taking a tremendous $#!t.  Repeatedly.

Does this make sense?  No.  And no one can riddle me why this is working.

Can it work for others? I don’t know.  No one can tell me why it’s working and no one wants to ask someone else or confer or experiment or show me anything that indicates that they would like to find out why.

I don’t know.  Maybe this is just a fluke.

 

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Better Days – – When I Have the Guts.

I’ve been doing WONDERFULLY since January, thank you.

 

I never know what to write when things are going well.  I really don’t.  And sometimes I’m afraid to admit I’m doing well, as if Karma or the Heavens or the Universe will smile smugly, thank me for the reminder, and curse me with arthritis and fatigue and neuro stuff all over again.

I have had one such run of good health since contracting Lyme and it lasted for 9-10 months.  Now I’m on month 5.  It’s unbelievable.  Today is unseasonably cold and rainy (it’s Memorial Day weekend – – this week we had temperatures in the 80’s and today it’s in the low 40’s.  I kid you not.  A mountain nearby suffered SNOW today.  TODAY.).  So I feel “jointy.”  My hands hurt.  My hips ache.  My knees are creaky if I sit too long.  But ………. aside from that, I’ve been FINE.

What’s Different?

I don’t know if it’s a coincidence or not.  BUT.  I had stubborn stomach flu symptoms last fall / winter. It was never-ending.  I called my doctor ……. it came with a fever.  My boyfriend had it several times. It wasn’t just me.  She said if my labs didn’t show anything then she’d send me to a gastro guy.  She did.

He mumbled something about IBS, gave me a coupon for some fiber supplement and said he’d give me a colonoscopy to make sure ……….

I wanted to cry.  Fuckin’ IBS.  Nice catchall phrase.  It’s up there with Fibromyalgia.  (*NOTE: I DO believe in Fibromyalgia.  BUT I also think it’s become synonymous with “I don’t know……..and my brain is getting overtaxed thinking about it so I’m  going to throw a diagnosis at you that is hard to prove AND disprove …….”*)

I asked about my fever………. is a fever a hallmark symptom of IBS?  He frowned and said no, ushering me downstairs to schedule the colonoscopy.  I was dismissed again.

But I played the game.  I waited.  I went to the colonoscopy.  The prep sucked ……. just as my  friends in the 50-plus bracket warned.  But? Afterward I felt better than I had in years .  I told him this, too.  He said it looked fine …….. but I have an elongated colon.

I laughed.  He sternly admonished me not to laugh:  “Some people get colectomies due to this!”

The laugh silenced, my smile straightened.  He suggested that the colon does not properly propel my POOP and that I had “paradoxical diarrhea.”   He suggested that I was constipated and that when there was too much, the improperly digested food leaked around and out ……… not really “diarrhea” in the traditional sense (BLECCCH).  He said that he is not surprised I felt better after the prep.  He prescribed it and said we’ll see how I do.

Well?  I’ve been using the prep monthly and largely feeling better.    More energetic.  No real pain issues.  It’s unreal.  It’s the only connection, the only correlation that seems to have anything to do with the onset of my feeling better.

HUH?

I can’t find a lot on the internet as to why one would have anything to do with the other. I know there is a lot to be said about the immune system and the gut ………. but the specifics? I don’t know.  My brain shuts down when I make any attempt to understand this correlation.

But there’s also THIS:  http://dietickdie.com/neuroinflammation-stemming-from-your-gut-is-it-lyme-or-your-abx/

It’s worth a read.

Salt Protocol & Poop ?

I was thinking, too, about the diarrhea I had sporadically during the salt protocol ……… and I wonder if this contributes to the improvements people report.

Anyway ….. if any of you have any feedback on this then please let me know.

I think we should try to unveil some mystique surrounding improvements just as much as the setbacks.

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The Gastro Guy / IBS et al

The background story so far , to get you up to speed:

1.  I have had recurring “stomach bugs” that have involved diarrhea (sometimes explosive!) accompanied by nausea and fever.

2.  After finally seeing my doctor, I was referred to a gastroenterologist

3.  At the conclusion of my appointment, he diagnosed me with IBS (see my blog: https://bloodylymey.wordpress.com/2013/01/01/the-f-word-fibromyalgia-and-why-im-doubting-the-goodness-of-electronic-medical-records/  or copy and paste:  https://bloodylymey.wordpress.com/2013/01/01/the-f-word-fibromyalgia-and-why-im-doubting-the-goodness-of-electronic-medical-records )

4.  Had my colonoscopy – kept waking up during it!!!!!!!  UGH.

5.  Went to my follow-up appointment with the gastro guy.

 

What He Said:

1.  My “IBS” may actually have to do with my having an elongated colon, an extra long colon, otherwise known as a “redundant colon.”

2.  My colon, being extra long, has more curves and bends and whatnot.  This predisposes me to constipation.

3.  The diarrhea is actually “paradoxical diarrhea.”  He explained that while the stool is festering in my colon during constipation, the stool coming along is the texture of “apple sauce” and sprays around the constipation because my colon is already full.

4.  He asked if during my prep for the colonoscopy if “a lot” came out.  I nodded vigorously.  It was never-ending.  Frankly, I wondered how there could be so much  – particularly after having had diarrhea.  I also let him know I felt WAY better after.  He nodded and smiled.  This makes sense.

5.  He prescribed ……….. the colonoscopy prep!  He said I did not have to drink as much as often or for as long. Just to give myself a periodic cleaning.  He recommended I do this after having diarrhea to see if it truly is constipation.

Huh.  No kidding.  He backed off of the IBS stuff.  I chuckled at the “extra long colon” and he stared sharply at me and told me it’s not funny.  “People have colectomies because of this.”

Oh.  I sat up straight, the smile replaced by a somber face.  So we have a plan.  Good.

Elongated Colons / Redundant Colons:

I never heard of this and jumped to the conclusion that it’s rare.   It’s not. It’s fairly common and some people may never know it, may never have a problem due to it.

The constipation has to do with bowel contractions being propulsive.  This form of constipation is called “slow transit constipation” or STC.  With a long colon, the stool has farther to travel.  There are more bends, more twists and turns, and then there’s the additional distance.  Sometimes people become vulnerable to STC after childbirth, a C-section, or even abdominal surgery for other things.  Additionally abnormal generation of nitric oxide in the colon inhibits propulsion of the stool.

The internet articles I have read have all cited high fiber diets as the end-all of STC.  My gastro guy asked about my diet and I told him (adding that I am not perfect and we’re following the holidays).  I already have a fiber-rich diet.  He liked what he heard and gave me the prep.

Last night I bought aloe juice.  It is said to be helpful with bowel movements.  It is pulpy!  I never had it before and was surprised by all the floaters.  BLECCCH.  But after I relaxed, it had the texture of freshly squeezed pulpy citrus juice.  Others have described it as “slimy.”  Mine was not ………. but I do know there is more than one brand.  As for today’s B.M.?  It worked.  No diarrhea either.

So, we shall see.

 

 

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