Bloody Lymey

A Blog About Living with Lyme Disease

Gut Bacteria & Joint Pain

I found this interesting article:  http://www.theatlantic.com/health/archive/2015/01/joint-pain-from-the-gut/383772/

To tell you why:

I was diagnosed with Lyme in 2008.  The specialist I was referred to thought I had it for 2-3 years by then.  Since then I had been in mortal agony or suffering debilitating exhaustion except for a 9-month remission, until now.  I have been without symptoms for about a year and a half at this time, and the corner-turning seemed to accompany an unrelated visit to a gastroenterologist.  I went to the gastro guy due to incurable diarrhea with fever (not an IBS thing, another fun thing that Lyme Disease seems to have spurred).  He did a colonoscopy and I felt like a new person after it.  During my follow-up appointment, he said he found that I have an elongated colon and he would like to follow me since it may create problems later.  I told him how I felt way more energetic and rather pain free after drinking the prep. He laughed and shrugged and said he sometimes prescribes it for people.  I have been prescribed this. I took it monthly for a while.  Now monthly isn’t entirely necessary.

I would start to feel symptoms settling back in …… gradually ………. if I skipped a month.  This reminded me that it wasn’t a fluke.

So my layperson speculation is that I DID have Lyme Disease. I was treated for it — maybe even overtreated.  I lost count after 18 months of antibiotics.  I’m wondering if this so horribly imbalanced my gut flora to the extent that I continued to have Lyme symptoms even if it was no longer Lyme Disease.  Maybe my gut was overrun with bad bacteria and maybe that is why I “herxed” when I was on antibiotics ?  This is allllllll speculation.

The facts here are this:  I took colonoscopy prep and felt better.  I continued to feel better taking this peculiar treatment.  I still feel better and it’s going on 2 years.  The above article is interesting.

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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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Poppin’ Fresh Dough

I have been feeling fine.  Really.  REALLY fine since January.  Yes.  8 months now.

This is the 2nd longest stretch of feeling well.  The 3rd longest would probably be a distant third and measured merely in days.

Buuuuuuuuuut.  The nagging thing is my gut.  Unzipping my pants is like pulling the label off a can of Poppin’ Fresh dough.  You know how the dough pops and busts out of the crevice you created?  Yeah.  That’s what an unzip does.    And my abdomen is mushy and doughy.

I could stand to eat less, yes.  And I quit smoking in January, so this has been an uphill battle.  But when I lay off the gluten I tend to be okay.  And I’m even more okay if I lay off the sugar. In fact? If I do the 17-Day diet with its abstinence of carbs altogether I lose 10 lbs almost instantly.

But I can’t seem to adhere to that right now, and that’s okay. I went into Macy’s waving my white flag, looking for a size up.  I cried Uncle.

I’m not alone.

A LLMD claims all his/her patients have “Celiac Disease.”  http://lymemd.blogspot.com/2008/05/what-does-gluten-have-to-do-with-lyme.html

If you consult Mr. Google, surely you will see that all lymies have “gluten intolerance.”

My doughiness disappears when I lay off the gluten.  My bowel habits become more predictable.    I enjoy heightened levels of energy (imagine!).  I don’t have those glycemic crashes where I eat some pasta and then nap dreamlessly for two hours.

Oh, I know what I have to do.   But I’m not doing it.  Freakin’ pizza is more important.

Well…………… that’s the truth.  But you know what I tell myself?  It’s EASIER to get gluten on the run.  Drive-ups offer salads, yes, but you cannot eat and drive with that. You can feel your way around a wrapper and bite into a greasy cheeseburg while you drive in good conscience.  They say when you rationalize, you tell yourself rational lies.  And here I am telling myself that a lot of my lunch breaks are on the fly and it’s unavoidable.

This is a good article about why it may be helpful to lay off the gluten – whether you’re a believer or not. It gets into the incidentals and the allegations and the what-have-yous.  http://gluten.lovetoknow.com/about-gluten/gluten-free-diet-lyme-disease

Feel well, my friends.

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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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Googling, “Why Do I Feel WELL?”

We labor over the internet, googling symptoms and scrutinizing the results.  We tirelessly [snicker, snort…. tirelessly………]  okay, we READ all kinds of articles and see if there’s a pattern or some sort of consensus.  Then we find out what’s wrong (or maybe not, maybe we’re still suspish’ but test results or negative or doctor insists treatment was a success).  So we google some more, trying to exhaust all possible solutions to the same extent that we ourselves are exhausted.

So here I am.  I randomly felt better in January.  It emboldened me to quit smoking (smoking increased my blood pressure, made me feel more alive).  I feel even better still.  My complexion is pink again.  I take the stairs.  When I wake up in the morning, I feel like I’m done sleeping.  I can’t believe it. I haven’t ever felt like I was done sleeping in a couple of years.  I have felt, at best, like it was “time to get up.”  Not like I had slept enough – – like I had eaten enough, that satiated feeling!  That “time to stop” feeling.  Hmmm.  I’m still amazed.  My thinking has more clarity than it has in eons.  I feel my adrenaline occasionally – – when a car cuts me off or something normal like that.  I haven’t felt that since 2010.  Really.  I have energy now. I have stamina!  A long day is not only bearable, but sometimes invigorating.  🙂

So it occurred to me today to google this!  To find out what I was doing …. right.  Of course nothing came up.  Of course!  I’m not even sure how to phrase that in the search engine.  What are the key words?

I know that my uptick in good fortune with my health seemed to coincide with my colonoscopy.  In my follow-up with the gastro guy, I told him this (no JOINT PAIN even – – the Rheumatologist graduated me, telling me I don’t “look like a patient.”)  He asked if a LOT came out with the prep and I said it did.  I mentioned this to my Primary and she shrugged and said there is some buzz in the medical community about what toxins can do, but didn’t seem committal to any reason.  He suggested I use the prep occasionally and I did.  It was $50 copay and worth it.  I think?    Of course this could all be a coincidence.

So I googled my “symptoms.”  No joint pain.  Energy.  Stamina. Improved mood.  No nerve pain.  Improved bowel function.  Mental clarity (is that the opposite of brain fog?).  I didn’t find anything terribly conclusive and certainly no advice on how to change it.  😉

They say sickies should keep off the internet when they’re feeling poorly.  Don’t we have ourselves dead and buried?  Should we “wellies” stay off the internet when we’re feeling well?  We have ourselves living for eternity?

Nah.  At best, we enjoy it while it lasts.

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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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The F-Word: Fibromyalgia and Why I’m Doubting the Goodness of Electronic Medical Records

Let me preface this by saying that I BELIEVE Fibromyalgia exists.  However, I do NOT think I have it.  I also think the medical community sometimes uses it as a catchall phrase and that it fits more nicely than “I don’t know.”   I think sometimes, too, it is an accusation instead of a diagnosis and I think I’m being wrongly accused.

My first circuit with the diagnostic world involved terms being tossed at me:  R.A.    M.S.   Chronic Fatigue Syndrome.  One by one, I would go home with the term du jour and google it.  More often than not I would think, “Yeah, but…….”  And I’m doing the same with Fibromyalgia.  Except without as much of the “yeah” part.

Fatigue?  Oh, yeah.  Weakness?  Heck yeah.

I know “Myalgia” means muscle pain.  I do not have muscle pain.  Joint pain, yes.  Nerve pain, yes.  Muscles and tendons?  No.

So I went to the Rheumatologist and he threw that word at me.  I squinted, waiting for an explanation.  He conceded that he pressed my pressure points and that I didn’t have the Fibro’ response.  Just as every doctor before him had done.  Same results.   Didn’t hurt.  Didn’t feel sensitive.  He explained that sometimes people have it and pass the test.  Hmmmmmmm………. I didn’t think it hurt anything for him to think that.  He also said what’s bothering my knees are my tendons.  When I asked if that’s what the “grinding” sensation was, he said “You have grinding?”  He squeezed my knees again, maintained it was my tendons.  I asked about my hands.  He looked at them again and offered no explanation.

I went to the Gastroenterologist yesterday due to a recurring stomach bug.  I filled out the initial questionnaire.  Yes to diarrhea.  Yes to nausea.  Yes to fever.  Yes, yes, yes.  Constipation?  I politely wrote “no,” thinking “I wish” was a more apt answer.  I wrote details in the margins.  He read it and seemed receptive. He showed me a flashcard with numbered stools on it, asking me which ones I identified with. I showed him my baseline as well as my current state.  He asked if I submitted a stool sample before and I told him yes.  He said he would go look it up.  He did.  I heard him murmuring in the other room.  He listed some of my “priors” and current problems followed by the word, “period.”  He was dictating his notes.  I heard the words, “Fibromyalgia Period.”

WHAT?

Yeah. It’s in there now.  In my medical records, evidently.

He was gone a while and returned with pamphlets and a coupon for Citrucel.  “You have IBS.”  He explained that for a clear diagnosis, one must have the symptoms for 6 months but he said that its interference with my life and missed work is an indicator.  I asked him if fever is a part of it and he said no. “You have fever?”  He asked.  I nodded, adding that it was 102 last week so he didn’t think it was just 99.0 and I’m calling it a “fever.”

He waved his hand dismissively.  “That’s something else.”  He went on about how he’s arranging a colonoscopy to rule out other things and showed me to the receptionist before I knew what hit me.  It’s arranged next Monday.

I drove away.  It was all so whirlwind.  I wasn’t prepared to be given a quick diagnosis and shown the door.  Boom. It was over.  (Please remember I did NOT feel good so I was more vulnerable to this outcome).

I got to work and stared at my computer.  My eyes scanned my office, not seeing anything.

I.B.S.

I called my mother and found myself so angry I was crying.  I never do that.  I felt like it was all over once he uttered that word, “Fibromyalgia.”  He never saw the other F word:  “Fever.”

The plan, Stan, is for me to go along with the colonoscopy and ask some tougher questions at my follow-up.  The mistake I make – continuously – is going to these people and assuming they will hear me and my concerns.  I’m just naïve.  Just completely f**king naïve.

Electronic records:  I think they can be used for good or for evil. I think a doctor can scan them with his or her eyes and take what is typed there as an Absolute.  Don’t we all do that?  We see things on the computer that seem SO compelling and legit just because they are typed and in displayed on an all-knowing computer?  How many times do we see things on FACEBOOK and have to type the information into Snopes or something to let a friend who by all appearances is intelligent and educated know that it just isn’t true?  Are doctors this susceptible to the computer and what is revealed in one?  Sure. And why shouldn’t they be?  Medical “records” are just so much more official and authoritative than Facebook memes.

I think it’s possible.  Particularly if they know and otherwise respect the other doctor.

I can’t BEGIN to tell you how sick I am of doctors.  No wonder a lot of us sit in our houses swallowing supplements and eating exotic honeys and rinsing our mouths with oil and other home remedies.  Our families might think we’re strange, but have they ever been to the damned doctors with us and seen with their own two eyes how quick they are to dismiss us sometimes?

In this world  with its insurance obstacles and stuff, we just can’t have one doctor for life.  This ain’t the ’50’s where doctors came to our houses and knew our families and trusted us when we said we were sick.  Now we change insurance and sometimes we have to choose a new doctor.  Doctors take up roots in other communities or change their specialty or get promoted.   They just don’t remember us prior to being sick.  They don’t remember us being physically active and coming in for little more than an annual physical and being given a clean bill of health.  Throw specialists into this equation and it’s worse.  They know us by reputation.  By electronic reputation.

Insurance companies want outcomes.  They want a prognosis and a course of treatment – and they should; they’re paying for this.  So by giving us a vague diagnosis they get themselves off the hook with the insurance company.

I love my primary.  I believe she believes me.  I believe she’s doing the best she can.  But these freaking specialists aren’t very special.

The more I read about Fibromyalgia the less I believe I have it.  When I first read about Lyme Disease I felt like there was a parting of the heavens and I felt like “Yes.”  No but’s.

Reading about IBS, I feel like I’ve had it ever since Lyme and being on antibiotics. I was always either constipated or the Other.

With THIS whatever that brought me to the specialist?  No.  I think it’s laziness.

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