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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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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Needle in a Haystack

It’s really WEIRD that my last blog involved walking in the woods and walking off the trails.  Tonight I went for a hike in the woods.  There’s a beautiful sanctuary in the next town and it has a mountain you can climb, two beaver ponds, enough trails to warrant a map ……… just an incredible place.

I went and I rounded a corner and approached the farthest beaver pond.  In the middle of the trail was a beaver munching on brush.  I hopped off the trail and hid behind a tree. I watched him for quite some time.  Then I slowly crept up toward him .  He swam slowly away and I walked onto the bridge over the water where he was.  It was magical.  He was THIS close.  See why I cannot resist walking in the woods?  It’s my spirit home.  He was so close to me for a while that I could not photograph his entire body (or hers?)  at once.  I got a close-up of his or her tail!!   .  The beaver swam under the bridge and circled around gently like a tourist on a lazy river in a water park.  Just lazed there.  Then he or she dove and slapped the water HARD with the flat tail!  I never saw anything like it.  It was just mesmerizing.

I have felt mysteriously “normal” since January. I’ve quit smoking even!  I’m gaining weight, but it’s different than the Lyme weight.  It’s less poppin’ fresh dough and more solid (but still doughy).   AND it’s because I’m eating tons of jelly beans.  It’s less mysterious (and unfair) than the Lyme weight gain.

So in this trip to the woods ………. I RAN.  Yes. I ran over trails.  LOL. I can’t believe it either.  I leapt over tree roots and charged up hills and started to sweat.  This trip fed my body and soul.

Feeling euphoric, I returned to my car and took a big swig of my well-earned diet pepsi.

I drove slowly down the dirt road and away, gravel grumbling below my tires.  I drove through forests and marsh.  I half expected to see more animals – and hoped to.  As I made the ascent up the hill toward civilization, my hand perched atop my steering wheel, I noticed a black speck moving on my hand.

I grabbed the speck and took a glance:  a tick.  The archetypal, ain’t no mistakin’ deer tick.  Brown back, black appendages.  I pinched it between my nails and clumsily rolled down my window.  I glanced at my fingertips as I went to throw it out the window and …… GONE.

all4

 

How the HELL am I supposed to REST tonight????

What the F**K!!!!!!!!!?

That bastard ………. I have NO clue if she got on ME or fell to my car floor or ………. if she clung to my pant leg and fell of harmlessly when I exited my car.  NO freaking CLUE.

I’m furious, too.  This happened in my …… remission?  I don’t know what this is, but I’ve felt “normal” since January.  My energy is back to what I remember of my baseline.  No pains – just an occasional headache or what-have-you.  NORMAL pains.

I can’t allow myself to speculate that I have been cured.  Or even to dare think of that as a “maybe.” I was discharged from my specialist in 2009 when I was “cured” and I spoke of it in the past tense for ………. 9 or 10 months.

I took my son on a vacation to Las Vegas when the symptoms started creeping back.  I didn’t know how much “time” I had and I had the money and an understanding boss who let me take ten days off with five days’ notice.  I didn’t dare plan too far ahead.  I didn’t know if it was getting worse – – and it did.  But as it turned out, I had about three months before it became anything near debilitating again.

So here I am.  Four months-ish of normalcy.  Every day I thank GOD for this stretch of feeling good.  I’m trying to live it up.  I “take the stairs” at work – – yeah.  NO elevator.  🙂  I’ve needed that elevator and because I don’t today, I take the stairs.  And even if I’m tired and would prefer not to, I smile when I get to the top of the stairs.  I smile very big.  A triumph.  Tonight I kicked it up a notch and walked for a good two hours, ran through some of it.

And that tick.   I laid down in the tub and scrubbed my hair and my back and my legs and butt and every thing at all.  I drained the tub and showered off and slathered my towel-dried hair with conditioner to make it less hospitable if he headed north.

I still have some Ceftin left.  My specialist told me it’s good for up to 5 years and if I get bit then “take a couple.”  I’m wondering if this warrants “taking a couple” – – even just so I’ll be able to sleep at night and not panic if I wake up tired some morning or if one of my joints hurts or something.  I should call.  The very thought of taking a high dosage of antibiotics again makes me cringe.

That tick.  Small as a speck and it stole my serenity.  He’s a needle in a haystack and every little occasional  itch I feel on my body is unbearable.

I’m trying to keep this in perspective.  I’m not a hostage anymore.  Or am I?

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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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Navigating the Diagnoses World ……. Yet Again.

Today I saw a Rheumatologist. Some things I liked, and some I did not.

I did NOT like his readily wanting to diagnose me with Fibromyalgia. I believe it exists, yes, yes. But I think it’s become a catchall for doctors who have given up on trying to diagnose someone. My BIG issue with it is this: Myalgia means MUSCLE PAIN. I do NOT have muscle pain. It seems to be the one tissue in my body that does NOT hurt. Nerves? YES. Joints? YES!!! He did the press test that I’ve had so many times before. I do not meet the criteria and he shrugged that off, mentioning that not everyone feels that pain during the test.

He did talk about Drug-Induced Lupus. Have you heard of this? There are three drugs that have higher instances of causing this:
1. Quinidine
2. Hydralazine
3. Procainamide

However, there are “at least 100” that can cause this. Among them are long-term use of antibiotics. The Rheumatologist was floored when he heard I was on them for as long as I was and he dropped his clipboard when I told him the milligrams.

“More than EIGHTEEN MONTHS?” He blinked in disbelief. “That’s common in India! But in a First World Country?” [He is from India].

My problem with the Lupus talk is the fact that I don’t get rashes. That was part of my f**kin’ problem in the FIRST place! NO RASH. Therefore NO LYME TEST.

But? I like that he is thorough and thinking of everything – everything inside and outside the box.

I’ve read more about Drug-Induced Lupus and it seems the symptoms are a pinch different (?) than Systemic Lupus. Here’s info from the Lupus Foundation of America:  http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroom.aspx?articleid=377&zoneid=8

They took 15 vials of blood from me today. I stared at the lab orders and tried to take it all in and memorize it. Nahhh. I just know there are tests for indicating Sjogren’s and RA, then Lupus. I LOVE that he is thorough.

He asked for my medical history, focusing me on when the joint issues started. I tried to take him through the Lyme issues beginning with hypothyroidism and progressing to neurological. He rushed me through that a bit. I got to the joint stuff and he asked me what my diagnosis looked like and why I was referred to a specialist. He seemed to be stuck on my initial tests being negative. He ultimately said something about “belief systems” and how “chronic lyme is a part of your beliefs system…. is it not? And your doctor’s?” I shook my head and told him I am keeping an open mind.

Yeah. I B.S.’ed him a little. I am done with being dismissed just because I don’t believe my Lyme Disease has been entirely eradicated. Yeah. I was on Ceftin for months and months and months. If it was to work, wouldn’t it have worked in the first place? Maybe it did SOMETHING. Maybe it simply kept pace with their freakin’ replication. And now I’m off of it.

I told him about my Herx reaction when I took antibiotics for strep last year. He nodded and stared at me. Then he asked if I was ever given ____________ for Lyme. I forget the name. Black something? Blackin-something? I said no. He asked if I was sure. I told him very firmly that I had Doxy to start and all that came after that was Ceftin. He said, “Hmmmm. No? It has quinine in it.” I said no, but did tell him I use tonic water for nerve pain – and that it WORKS.

He kept asking if I have an opiate addiction and was perplexed by Low Dose Naltrexone. I explained it is LOW DOSE. I explained I needed it for my nerve pain. That it WORKS.

He seemed to possess one of those airs of the doctor who does NOT like lay people knowing more than he does. I did not explain the Low Dose Naltrexone or its function. Now that I think of it, I don’t know how well I conducted myself in there. I felt like I had to be a bit loose the first time. Have to get to know him.

So 15 vials of blood. I felt very woozy after! He said to call in 7-10 days about the labs and my next appointment is in November. I told him about the 17-day diet and how well I’m doing – except my HANDS and I had to work in south county today so the driving/steering was painful and I had to pry my hands open after [typing isn’t bothering me but handwriting is intolerable]. He said for now we will not treat me with anything. If I’m doing alright then we won’t rock the boat. Agreed.

An interesting aside with the 17-Day diet. Last night I had the tiniest bit of spaghetti – my first carbohydrate in 20 days. I was exhausted. The fatigue hit me and I fell stone-cold asleep on the couch. Felt a bit foggy today: gradually the fog lifted in layers. Maybe I do have a food allergy/sensitivity of some kind.

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Oil Pull Update #7

I’ve done more than 7 Oil Pulls, but it seems to be getting tedious to write about every time I do it since sometimes there are no changes.  An interesting change — and it might be a coincidence — is I’ve had a hideous wart on my index finger for well over a year and a half.  It’s stubborn.  I’ve filed it, put things on it, tried the duct tape remedy (but I admit all the time how inconsistent I am with keeping up with things like that). Things shrank it, but it stubbornly stayed affixed to me!!! 

Since starting oil pulling, it’s been shrinking.  Today is Day 7 and it’s nearly gone.  This I did not expect.  Maybe it would have gone away this week regardless of what I was doing, but I think it’s peculiar that after all this time and after all this effort it’s diminishing.  It’s now flat and its coloring is the same as the rest of my hand.  

I feel better.  WAY better.  

With the coconut oil, I had been describing it as thick and something akin to the texture of butter.  For some mysterious reason the entire jar has melted.  YES it’s hot and humid here, but it has been all week long.  It’s far easier to contend with and I don’t feel as repulsed as I had.  Ha ha.  The Tablespoon of oil feels like a smaller amount now that the oil is OIL and not some thick butter glob.  

That’s my 2-cents for the day.  I think I’m attached to oil pulling now.  At first I didn’t feel like doing it — but encouragement from some of my readers helped!  Now I feel like something’s missing if I don’t do it.  I must admit I don’t follow it to the T. I don’t do it on a 4-hours’s empty stomach and I don’t abstain from drinking liquids for an hour. But I’m definitely seeing positive changes.  

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Oil Pull #6

I’m still doing the oil pulling. I skipped a night doing it and felt a difference in the morning – a not so positive one.

Smoking is becoming less desirable to me – how crazy. I just feel so clean after I pull and then when I smoke I feel increasingly like I am polluting myself . If you’re a nonsmoker then you might be saying “duhhhhhhh.” But if you’re a smoker …… you know what I mean. 🙂

I am still bounding with energy and my fleeting joint pain seems to be right after I do an O.P. My skin is VERY much clearing up. My bowel movements are more normal than they have been in eons (TMI?) but I can tell there is an increase in bile (evidence of liver detoxing). For years I have fluctuated between constipation and diarrhea. Every day this week I have “gone” in the morning and it seems to be a happy medium. This I did not expect.

No matter how much I read about oil pulling and how it works or why it works, I still can’t wrap my head around how swishing with oil for 20 minutes can have this much of an impact on all of my health.

Food and drinks taste way better and gone is that metallic taste that I have been struggling with.

I have my “Aunt Flo” visiting this month …. and my symptoms seem to be what they were years ago – I mentioned this a couple of blogs ago, but think it’s worth mentioning that it’s continuing.

I have had some mysterious water retention for a few months that makes my abdomen and thighs mushy and dimpled. Now my water retention seems to be the more solid variety that accompanies PMS. My gut feels kind of firm now (not like “bounce a quarter off it/six pack abs” …. just tighter). THIS I’m VERY pleased with. And there’s no more dimples on my belly.

I had a horrible and sudden urge to cough when I was doing O.P. #6 and I was in our basement, which is carpeted. That would have SUCKED spewing oil all over the rug. So it may be something to be mindful of. The urge passed and somehow I had summoned some control to keep it in, doing a couple of gentle throat clearings helped when the worst of it ebbed.

I guess that’s all I have for today. I want to keep on keeping on.

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Thank GOD For Today …….

I can’t believe it.  I’m feeling WONDERFUL today.

The old me:

– Walked FAST.  People would get winded if they tried to keep pace and keep conversation with me.

– My mind raced with sharp clarity

– I wanted to be out and about exercising and doing things

– I got things DONE

The “new” me (or for the past 6 years “me”):

– Slow and creaky

– Brain fog

– Wanting to lay on the couch and watch TV at the most …. sleep preferred

– I did as much as I could and felt like I was always coming up short

TODAY:

-I folded the laundry that has been laying neglected in the basement for the past two weeks (our basement is carpeted and like a regular room …. not musty and gross)

– I raced my son to the front door when the doorbell rang

– I watered the gardens …. and my son

– I went to the grocery store and quickly whisked the bags from the car and in far fewer trips

– I got out in the sun with my boyfriend in the convertible and we laughed a lot. I didn’t sit there like Bernie in Weekend at Bernie’s

– Making dinner for myself wasn’t a chore

– I felt restless laying on the couch watching Family Guy instead of nodding off

– I smiled a lot today

– I did lots of laundry, taking them from the second floor to the basement and back – that’s a lot of stairs and I didn’t have to climb them with my hands or back down to shift the strain from my arthritic knees to my calf muscles.  😀

– My heart was filled with gratitude

I have NO idea what changed.  But for the record, my doctor changed my thyroid meds from Levothyroxine to Armour.  (Levothyroxine only has I think my 10 months of remission included Armour (and completion of a lonnnnnnng antibiotic regiment).  Hopefully this is the start of something good.

To make the distinction (and this is relevant since Lyme CAUSED my hypothyroidism): 

Armour – naturally derived thyroid hormones (from pigs …. not Kosher if you’re faithful in Judaism or Islam), and have BOTH T3 and T4 hormones

Levothyroxine/Synthroid – manufactured thyroid hormones — only used T4 with the expectation that the body use it to produce T3 hormones

Today is day 2 on Armour. I had been on it before, but then it was backordered and rumor had it that they were done producing it.  I was begrudgingly back on Levothyroxine.

Now:

Man, my mind is racing.  I’ve been filled with this kind of hope before.  I have to slow down. It’s devastating when it ends. But I am enjoying today to the max.  I hope I don’t have trouble sleeping today.  When I get like this, I’m like a little kid on Christmas Eve, not wanting to sleep .  🙂

Oil Pulling?:

I bought coconut oil yesterday and plan to begin oil pulling – hopefully tomorrow.  I’m wondering if I ought to “rock the boat,” though.

When and if I begin, I’ll post something each day and note any changes/improvements.  And if you’ve been following my blog at all, you may note I have problems with following through on these experiments.

Unfinished treatments included :

the Vitamin C & Himalayan Salt Protocol – stopped due to BAD herx and starting new job after brief period of unemployment

Manuka Honey – Had labs coming up and didn’t want to reduce my inflammation and have the doctor get an unfair view of my health.

Still doing: 

Apple Cider Vinegar – 2 TB in 8 oz of water , 2X/day (stopped briefly during stomach virus)

Magnesium

Nattokinesse

Glucosamine

Vitamin C

Calcium

Flax Seed Oil

Biotin

Kelp Supplements/Iodine

Multi Vitamins

Vitamin D

Vitamin E

B Vitamins – all inclusive

Low Dose Naltrexone (Prescribed)

Sertraline (Prescribed)

 

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