Bloody Lymey

A Blog About Living with Lyme Disease

Candida Post Antibiotics

I have long suspected I have candida problems, the kind in the intestines.  Months of antibiotics, I think, did a number on my gut.

 

This site is awesome:  http://www.thecandidadiet.com/candida-changes-gut-flora-after-antibiotics/

 

When I get off of sugars – carbs and all – I do SO much better.

 

My stomach is something like Pillsbury Dough.  I unzip my pants and it POPS like the dough does when you peel that label a bit much from the can.  THUMP! And the dimply pasty dough pokes out from the seams.

 

But it disa-freakin-pears when I get off of carbs.  And my intestinal function improves.  And more.

 

I also think there is a correlation between my remission since seeing a gastroenterologist and getting a prescription for the colonoscopy prep.

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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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Lyme Disease and Magnesium……….

Oh NO.  Another supplement article.  How many times do we read about a supplement and then add it to our collection?

Well?

First:  read the whole thing and totally inform yourself.  And read other articles on the web.

This might help someone, so I feel obliged to pass it along – all of it, even the contradictions.

I remember someone recommending Magnesium to me to help with my “nerve pain.”  The bottle promised, “supports healthy nerve, muscle and heart function.”  Sold.

It did help enormously .

Well, I happened upon this article:  http://www.lymeinfo.net/magnesium.html  (and if the link fails, copy and paste: http://www.lymeinfo.net/magnesium.html)

It reports that many of us have magnesium deficiency and that symptoms include:

  1. Muscle Cramps
  2. Weakness
  3. Fatigue
  4. Insomnia
  5. Stress intolerance
  6. Heart irregularities
  7. Confusion

Sound familiar?

Magnesium deficiency can also lead to constipation – – this is why Milk of Magnesia contains Magnesium!  That’s partly why epsom salts as a saline laxative work.  So it’s a good digestive aid as well.

What the website I mentioned earlier recommends is (and ASK your doctor first!):

“After an extensive review of the literature, Marnie at online forums has proposed the following treatment for chronic Lyme patients:

MAGNESIUM PROTOCOL:
– Magnesium Malate, approximately 200mg 6 times a day (every 2 hours).
– Sublingual B6, approximately 12mg with each magnesium dose.
– Selenium, approximately 12mcg with each magnesium dose.ADDITIONAL SUGGESTIONS:
– An immune booster such as “Host Defense” or beta glucans.
– Multiple vitamin and mineral supplementation
– A good alkalizing diet”

A good alkalizing diet ……. a good alkalizer is actually none other than Alkaseltzer Gold. It’s hard to find the Gold variety in stores, but it’s none too hard to order it online.

But WAIT: 

Some believe that the Borrelia feed off of magnesium and that is why we become so deficient.  Sooooo……. if you’re someone who opts for the “more is better” ideal, then please remember you may be also feeding what is taking it away.  (Yeah, so I’m contradicting what is written above, but I’m from the camp where I like to supply all information and let YOU decide what to do with it).   This theory that the bacteria feed on the magnesium and therefore steals it from us would explain why my heart was beating so terrifyingly irregularly at the height of my illness.  It explains the muscle twitches, the confusion , the exhaustion …….. all of it.

Some LLMD’s recommend starving yourself of Magnesium when you’re on antibiotics to deprive them of their food as well as killing them with the medications.  So that’s another thing to bear in mind:  where are you in treatment?

Not All Magnesiums are Created Equally: 

Many sources recommend Magnesium Chloride as it is the “most easily absorbed.”

The one in my cupboard now simply says MAGNESIUM.  Looking at the ingredients, however, it says “Magnesium Oxide.”

In terms of dosing, all sources seem to agree to take a little throughout the day; taking too much at once can lead to diarrhea and that appears to be the one side effect everyone agrees on.   Some mention sweating (epsom baths do this to me and that contains a lot of magnesium….. but NOT sweating is my beef with Lyme Disease, so I embrace this side effect with open arms).  Some mention nausea and even vomiting.  If your stools are loose as a general rule then please show special caution.

All seem to concur that keeping an even dose of it in the bloodstream throughout the day can help with your symptoms – – be it nerve pain, fatigue, heart irregularities, etc. – AND squash side effects.

The book, “The Top 10 Lyme Disease Treatments,” states that too much Magnesium can cause us to Herx’.  (*I never read the book , just the free excerpts from the internet…….. here’s some now:  http://books.google.com/books?id=J4TFtQeHkQAC&pg=PA287&lpg=PA287&dq=lyme+disease+and+magnesium+deficiency&source=bl&ots=-sLTa333dq&sig=w-nUwJaM8cjvS5phKJwx1_Rqv3U&hl=en&sa=X&ei=8orSUKbXMc630AH3k4GABQ&ved=0CIoBEOgBMAk#v=onepage&q=lyme%20disease%20and%20magnesium%20deficiency&f=false    Oh, and the book alleges that starving the bacteria of magnesium is “erroneous.”

More:

There are things that magnesium deficiency is alleged to cause or contribute to — Fibromyalgia, Osteoporosis ….. Read more here:  http://www.umm.edu/altmed/articles/magnesium-000313.htm  (or if link fails:  http://www.umm.edu/altmed/articles/magnesium-000313.htm)   It makes me almost wonder if that is why some of us with Lyme had some “spinoff shows” such as Fibromyalgia afterward and other issues they have listed.

If I were to draw my own conclusions, I’d draw the conclusion that it may be best for ME to take Magnesium and help with the symptoms (For goodness sakes!  Especially with matters of the HEART!), and not cut off my nose to spite my face.  But I’m not a doctor.

Anyway, best wishes and good luck with your Magnesium.

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Planning a Trip with Chronic Lyme (or Chronic Pain/Chronic Fatigue)

It’s been a couple of years since I’ve gone on a full-fledged vacation.  In less than one week I am taking a 4-day long weekend.  How does one define a vacation?  Must it be 1 week or more?

Partly out of financial necessity, I have avoided a full vacation.  Partly out of not knowing if I will be up to it when the time comes, I have avoided a full fledged vacation.  My last vacation felt like a risk.  But I organized it at the last minute and thankfully had a great boss that did not bind me to a lot of advanced notice.  I got a very low rate since it was close to the departure time, but what really fueled this was being more optimistic about my health and a more educated guess as to how it would be once I got out of town.  As a single mom, I was terrified my son and I would spend more time in our room due to my being exhausted or weak or in pain.  But I got there and it worked out great.  In fact, Las Vegas was a great choice with its dry heat.

Fast-forward 2 years and 4 months.  For the past week I have felt exhausted and weak.  Thankfully my joint pain has ebbed, but honestly I feel more alive with pain and more dead with fatigue.  I can’t help but want to choose life even if my mobility is hindered.  I’m dying to get away and here I am scared about what the weekend will be like.

I know that the secret to success is having an open mind and not projecting what our weekend getaway will be like.  If I envision walking for hours through quaint New England towns and through color-drenched wooded paths then I may be doomed to bitter disappointment if I cannot live up to it.

What I’m TRYING to do – for the sake of my sanity and self-preservation – is to envision the worst-case scenario:  I sleep late,  get up and spend a lot of time sitting in the car as we drive through cool back roads – occasionally stopping to get out and snap a picture – and then going to bed early.   I can be Bernie in Weekend at Bernie’s ……. sitting stiffly with my shades on while life happens around me.  That’s okay.   At least I’ll be out in the hub of things and not laying on my couch wishing …….. wishing.

I need to renew my commitment to being gluten-free.  I have skimped on my gluten-freedom this week and how I’m feeling now may have to do with the occasional cheese & crackers, the three pieces of homemade garlic bread I could not resist yesterday, and the homemade cinnamon apple cake someone brought to our house the other night (though I will say the latter was well worth any fallout).

I’ve started eating tons of yogurt.  Not sure why, but I seem to be at my best when I’m consuming lots of probiotics.

I’ve also taken some Claritin since a great friend with similar problems and a nursing background  has mentioned seasonal allergies kicking up autoimmune stuff.

Yesterday I realized that our trip was coming UP and we had not yet solidified where we were going or where we were staying.  Not a good approach for a holiday weekend.  It seemed like nearly everything I attempted was met with obstacles and difficulties.  We were vying for a night on Martha’s Vineyard ……. but we could not get a room for just one night that synced with the ferry.  Then other places required a 2-night minimum.  I had booked one place finally and then went to book the ferry, but the ferry filled up for that day in the mere 1/2 hour-45 minutes I had spent finding and arranging this place.  Then this place tried to refuse our money back since it was within a week of our stay (and within 10 minutes of our arranging the f**king stay!!!!)  I fought on the phone and our lady through the website got him to back off.  Siiiigh.  I stopped for the rest of the day but the hamster-wheel in my head kept beseeching me to continue and get this worked OUT.

We’ve given up on Martha’s Vineyard.  Maybe it wasn’t meant to be.  We looked at the foliage forecast on Yankee’s website and it looks like foliage peaking will take place further north than that — the Vineyard and Cape were markedly green on this map.  We don’t want that, do we?

So the lesson I learned is that pushing for the outcome I want isn’t necessarily in the best interest of everyone.  I PUSHED for us to get a night on Martha’s Vineyard and there were roadblocks every step of the way and I was frustrated, but I wouldn’t back off.  After I calmed down and thought things through some more, did some more research,  I could finally see that more colors – and perhaps a better time – could be had NORTH.

I’m going to try not to push my agenda for perfect health next weekend – and I saw how badly things can go awry with my sanity and spiritual well-being when I push too hard.  I don’t want a weekend full of fighting with the universe and not getting my way.  I’ll take what comes.  I’m very lucky, too, to have a very understanding boyfriend who is genuinely alright with all of this so the only pressure I have comes from within.

I’m going to take a vacation from that pressure.

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How Do I Do This Again?

I haven’t written anything in a while because, frankly, I’ve been feeling great — and living a life proportionate to feeling great.

Just three days ago I was in Boston walking the Freedom Trail.  There were steep hills and steps and I walked and walked.  The sun beat down on me, I took pictures, and I cherished every minute of it.

On the drive home,  my hands ached.  I thought maybe I was gripping the wheel too hard in the thick traffic on the Mass Pike.  I mindfully loosened my grip.  The aching continued.  It increased.  As we climbed the highest point on I-90 East of the Dakotas, my hands were killing me.  I did my trick:  extended my arms to brace myself with my elbows and palm the steering wheel.  This is great for long-distance, straightaways.  Not so great for city driving or lots of turns.

Climbing out of the car, my knees were creaky.  My hands were killing me.  The temperature in Boston was well into the 70’s with no breeze – just the warm sun.  At home?  It was nighttime and it was settling into the 40’s and smelling of frost.  I thought it was as simple as an extreme weather change in a very short time.

Now in three days, it feels like gravity is oppressing my limbs. It feels like my arms and legs weigh hundreds of pounds and I can’t sleep enough.  My joints are killing me.  The sore throat I woke up with after the day in Boston gave me hope that perhaps it is an arrival of the flu or something …….. something blissfully temporary.  But the sore throat has receded and here I am feeling lymey.

I had been abstinent from wheat and thriving.  I know in Boston we went out to eat.  I wanted a HOT meal and that ruled out salad, the only thing I could eat that was wheatless.  Everything else was a sandwich, pizza, or some other verboten thing.   I had pizza.  Could it be as simple as that?

I had pizza on my son’s birthday party without much incident.  Could it be that this pizza had more wheat or more gluten or more something?  It was very very thin …… less dough than what I had two weeks ago.

But Friday we went to a concert and underestimated how long it would take to get there.  For dinner I munched Dorito’s and a dark chocolate bar sold in the concession stand.  Thought I was playing it safe, avoiding pretzels and other gluten-gimmes.

My doctor hasn’t called yet about whether or not I have Celiac — – and I haven’t called. I keep forgetting.  I think deep inside I don’t want to know.  If I don’t have it, then there’s Lyme Disease.  Period.  Nearly everything else has been ruled out [again].  If I DO have Celiac Disease then……. no more “social eating.”  No more birthday cake.  No more cheese & crackers at a party.  No more pizza.  No more lasagna with curly layers of noodles.  No more fettuccine Alfredo.  And frankly?  Scrutinizing ingredients for hidden sources of gluten is not as easy as I had once thought.  Flour is a thickening agent in soups, gravies, salad dressings …… it serves as an anti-caking source in spices.  It prevents ice cream from crystallizing.  It’s everywhere.   Sometimes all there is to eat in a restaurant or when out of town is f**king SALAD.  And then you probably better ask for oil & vinegar with it because …… who the hell knows?

So here I am.  Somehow when this is my everyday life, I get acclimated to it.  I intuitively back down the stairs to spare my knees the agony, and the threat of falling on my face.  I get used to feeling like I’m constantly grinding gears in a stick-shift — ’cause that’s how my knees feel when I walk.  Crrrrrrrrch.  I get used to being tired and don’t feel like thinking is such a struggle.  The pain is always there and I sort of forget about it.  With this newness I’m acutely aware of all of this shit again.

Remind me:  How do I do this again?

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The Diagnostic World Continues — Celiac Disease

I spoke with my doctor about the results of my CAT scan and they were normal.  No blood clot.  Yay.

I reiterated — as I sometimes HAVE to do — about the magnificent bloating, remedied by the 17-Day Diet.  I pointed out that my “IBS” symptoms are under control now.  I told her again that it is an elimination diet, but that I had buckled and eaten pizza this weekend with bad results.

Humorous story:  my boyfriend’s grandson’s birthday party was last weekend and they had pizza.  I had two pieces.  The kind that are cut in squares.  Small.  After the second piece, I had that derailed locomotive feeling barrel-assing through my intestines.  They had an outdoor party, but everyone came inside due to rain.  The apartment was teeming with family members, friends and their kids.  The bathroom is central.  Very central.  I clenched my butt,  trying so hard not to succumb to my digestive system’s awful impulse.  The sun came out and it was almost time for cake.  I wanted to yell, “Wow!!! Look how NICE it is OUTSIDE!!!”

Due to the outdoor stuff being wet, they had the singing and candle-blowing on the porch.  I went into the bathroom.  I couldn’t do it.  Not enough time.  I briskly walked out.   I finally made it to the bathroom during the presents-opening which came blessedly soon.  Armed with air freshener, I had a hit and run with my diarrhea.  Don’t ask me how I made it .  I don’t know.  But rest assured, my friends!  It was a pressing issue!

I told the doctor about the instantaneous diarrhea and the subsequent bloating and fatigue.  I asked her if food sensitivities can cause nerve pain and joint pain and fatigue……. she admits it does.  She discussed elimination diets and how the key is to implement things eliminated ONE at a time to discover what I’m sensitive to, and suggested a “food diary.”  She asked if Celiac runs in my family. I told her no.

After getting off the phone, I realized I should have mentioned how my mother is on this same diet and doing fabulously and my father is on a gluten-free diet and has lost tons of weight and has more energy than I recall his having in years.  More strangely:  they’ve been divorced for 32 years and do not talk.  The fact that BOTH are doing this sort of thing is peculiar.  Maybe there’s something undiagnosed?  Even just one of them.

She asked if I wanted a Celiac test, cautioning me that there aren’t really other reliable blood tests for allergies.

So I had my blood drawn on Tuesday.  Arriving at work with another lab bandage – the white square of gauze with medical tape-, a coworker asked me what they had done now. I told her Celiac and she cringed.  I told her I sort of hoped it was positive.

“NO WHEAT?  Never?!”  She asked incredulously.

I told her how abstinence from a certain food would be easy.  These ups and downs with “Lyme” are not.  I told her Celiac would be more “treatable” and that cycles of not feeling well would be at least somewhat  easier to predict, avoid, etc.  She nodded sympathetically, but I really don’t think anyone could understand that if they don’t feel it.

I think you have to feel the disappointment in waking up tired and in pain after weeks or even days of feeling well.  The longer you feel better, the more bitter the disappointment.  Likewise, the shorter the duration, the more cheated one can feel.  I think you have to feel the balloon in your soul quickly deflate when you’ve finished a course of treatment and think you’re “fine now” only to become crippled and exhausted again.  I think you have to walk a mile enthusiastically in my shoes because you couldn’t walk that mile last week ——- with that wonder in the back of your head, wondering if you should actually enjoy this because it won’t last. I think you have to sleep on the couch for a night because you couldn’t get upstairs to your bed.  I think you have to fall asleep exhausted and wake up in the same state, wondering why you even bother trying to take a nap when it brings no relief.  I think you have to feel like your body is being impaled from within, impaled with scorching iron fireplace pokers with an electrical charge to fully understand the magnificence of the pain — an acute pain that would make you faint were it not so sporadic. I think you have to have your cupboard filled with supplements and buy JUST one more because you think “this might work this time.  This might help.”    I think you have to lumber down the aisles of the pharmacy looking for a new over the counter pain med because the last one stopped working; you have to decide whether or not to replace Motrin with Aleve or Tylenol, wondering if enough time has spanned since the last time that one stopped working.

So do I hope I have Celiac?  Yeah.  Yeah I do.  And I don’t want to be disrespectful to people with Celiac.  If you’re reading this and you have it, then wasn’t it easier to contend with once it had a name and a protocol?  I don’t necessarily WANT to forego birthday cake, pizza, cereal, and other favorites.  I don’t necessarily WANT to go to a party and find there’s nothing at all that I can eat.  I don’t WANT to go to a party to find that all I can eat is the celery and carrots on the veggie tray.  I don’t want to be invited to dinner at someone’s house and find that they are serving lasagna and nothing more.  That must be terribly awkward — and is it polite to ask someone what they’re having if you’re invited to dinner at their house?  Sure if it’s a friend or family member, then that’s cool.  What if it’s your spouse’s boss?  What if you’re going to meet your boyfriend or girlfriend’s parents for the first time and they invited you to dinner?  So I respect how hard it must be.  I imagine I would respect it a lot more if I had to avoid gluten and I would respect it a lot more if I had years of experience doing just that.

I just don’t want to feel like this anymore.  And I’m continuing to hope against hope that perhaps there is something I can do about this.  I think I’m also hoping for some validation from the medical community that I may never get.

I mean, “Chronic Lyme” does not exist, right?

I am slowly becoming prepared for how hard it must be to have Celiac Disease.  The other night was my boyfriend’s and my anniversary and we went out to dinner.  I ordered one of the few dinners there that did not involve pasta — and I don’t like fish, so that narrowed the choices as well.  There were three things I could pick from.

The waitress brought us a basket of bread – warm bread – and it smelled nice and tempting but I remembered what had happened after I ate pizza – whether it was gluten intolerance or a coincidence.  That squashed the lamentations about not being able to have bread.  Next, came my salad.  Covered in croutons. I picked them off and put them on a plate, brushed their crumbs off of the top as best I could.  After finishing the salad came a BIG stomach cramp.  Trying to maintain my composure, I pressed my stomach under the napkin on my lap and tried to keep a poker face.  My eyes kept bulging and my boyfriend asked what was wrong. I told him it was a magnificent cramp.  Gas maybe?

Please no diarrhea here!

I hoped it wasn’t the croutons.  Could I be THAT sensitive?  Or is this something else? If it’s not the croutons/wheat then what now?

My dinner was Chicken Marsala with potatoes and “fresh vegetables in season.”  I was now fearing that maybe they would thicken the sauce with flour like I usually always did with my gravies and things.  Dinner was good.  No aftermath.  The fleeting cramp was threatening, but nothing came of it.

Last night we went out for ice cream.  After my wheat-free week, this seemed like a reward.  Looking at the list of  flavors, “Cookies and Cream” sprang to mind.  Nope.  Nope.  Can’t do that.

Uhh…….. Can’t have a cone.  Have to have it in Styrofoam .

The ice cream joint, ever progressive, offered “gluten free” cones.  Jim pointed this out to me, but I had read a little about Celiac and a great site suggested steering clear of substitutes at first.  The rationale is that the digestive system has some healing to do and it’s best treated with “fresh foods.”  I have chosen to adhere to that.

Whether or not I actually have Celiac, there is something wrong that appears to be tied in to food.  I so want to know what it is.

Prior to my test, I asked friends with it about what I need to do for the test.  One (a nurse) said that they measure enzymes and that the enzymes are present when someone eats gluten.  She told me that I should not abstain from it.   So? I ordered a BIG calzone from our local pizza place.   Having worked there years ago, I recalled their enormous bags of wholesale flour that read “High Gluten Flour.”  I hoped they still used it.  The calzone was delicious.  My stomach violently rumbled before I was finished, and after swallowing the last bite I had diarrhea.  It wasn’t worth it.  But, if I test positive, then this was a good last hurrah.

As someone who is in A.A., they tell me  to remember “my last drink.”  [To people who can drink socially, “drink” does not mean the last drink in literal terms — not our last martini, our last beer, or our last sip of aftershave because we had no booze in the house …… it’s to remember the last stretch of drinking, our last binge, our last evening drinking, whatever the case may be.  The intent is not to remember what it tasted like or to tempt us; it’s to remember the consequences.  In the end of an alcoholic’s drinking, the consequences are generally BAD].  At any rate, if I have Celiac then I need to remember my last “gluten.”  I need to remember the consequences.

Strangely, after living it up this weekend with gluten, my joint pain has arrived within a couple of days.  Brain fog was fairly immediate.    I was also rather pissy for a few days — and that’s not like me.  It was very hard to overcome.

I’ve been experimenting with meds.  I have been off of Zoloft [an antidepressant my primary gave me for muscle weakness/fatigue] for two months.  I have been off of low dose naltrexone for a couple of weeks.  Due to the nerve pain returning last night, I am going to make haste to get a refill on my prescription today.  Strangely, I have read that LDN is used to help manage Celiac Disease [which is an autoimmune condition and not a “food allergy.”]  Is the nerve pain tied into the diet I enjoyed a few days ago or is it a result of the lack of LDN?  I don’t know.  I’m not playing with it, though.

At any rate, the past few days have given me a new appreciation for people who have Celiac Disease — even just selecting things to eat in a restaurant.   I thought it would be easier than this.  I thought it would simply be “don’t eat bread” and “don’t eat pasta.”  Period.  It’s trickier than that. I’ve also read about people who are incredibly sensitive and have been “cross contaminated.”  Maybe a little flour sprinkled  on someone’s chicken breast because it was next to the order that was being breaded or battered?  Then there is the knee-jerk reaction to order ice cream with cookies in it.  Then there’s the croutons on salads.  Then there’s the fear that if you ask for them without croutons that they’ll put them on by mistake and try to pick them off.   Then after a couple of bad experiences — and the bad experiences can bring symptoms for days or weeks – then who can trust dining out again?

So while I said I sort of hope this is Celiac, please know that I’m not intentionally impugning the difficult lifestyle of someone with the condition.  But I am trying to think “positive.”

 

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17 Day Diet Take Two / One Month Later

I have lost 18 lbs.   The first 12 were QUICK, but now it’s slowed down considerably.  And that’s okay.

I actually urinate regularly.  No more camel-hump/potbelly growing and distending throughout the day as I consume liquids.  My bowels are ……. normal!  I have had a couple of IBS incidents in the past month, but I mean that:  just a couple.   Both leaned toward diarrhea.  There’s been zero constipation.

My body retaliated with an acne breakout (but contrasted with Lyme Disease symptoms, that is NOT a big deal), so I started oil pulling again.  My skin cleared up rapidly.  Rapidly.  I’m suspecting there may have been internal candida, too – something I have thought myself to struggle with since all of the antibiotics.  While I did not “herx” with a candida die-off (aside from, perhaps, the acne and initial headaches), my tongue is now a healthy pink color.  Before it had some whitish thing going on …… a telltale sign.

While I have not followed the diet to a T — I had corn on the cob during the first 17 days. I have had pizza (from a place that makes sourdough crust sans yeast).  I have had pasta.  All in moderation.    I had a tiny slice of cake last night, one of exactly two servings of sugar in the past month.  That tiny slice of cake was bliss, but I almost couldn’t finish it.   I could feel my body chemically reacting to it ……. and I can’t articulate that much better.   I have been drinking diet soda, though more moderately.

What I have stuck to:  

1. Two servings of fruit a day

2.  8 Glasses of water

3.  Two servings of probiotics (Greek yogurt [higher in protein] with some polaner all-fruit – no sugar added/sweetened with fruit juice and a hint of lemon extract to make that Greek yogurt sour taste more palatable)

4.  Protein daily — perhaps not as much as I should

5.  Lots of “cleansing veggies.”

6.  BLACK coffee with some ice coffee exceptions that included cream but no sweetener — I can count those exceptions on one hand.

So this is, as they say in A.A., “Progress not perfection.”

My joints have been faintly creaky on occasion, but for the most part ….. nil.

NO nerve pain except that jab in the groin a few weeks back and a couple of pings in my ears.   Had the jab in the crotch not been so epic on the pain scale, I might have forgotten that isolated incident and the ears.

Headaches are gone.

Brain fog?  Gone.

Lyme Disease?: 

My doctor, before referring me to the Rheumatologist, said very clearly “I do not think you have an active infection [Lyme Disease].”  In the ER, when I was brought in with heart attack symptoms last week, the doctor asked about my medical history.  He was surprised that after I was “cleared” of Lyme, no one did another test to prove it.  However?  My first two tests were negative, so I don’t know if I could be convinced.  I would like to just believe my labs and put it to rest, but I don’t know if I could.  How many tests could convince me?  Ten?  I don’t know.

The Rheumatologist did NOT like my Lyme treatment.  My specialist was rather a one hit wonder:  Ceftin.  She tinkered with the dosage and tinkered with the duration of treatment ….. but overall, once I finished my first course which was Doxycycline, it was just Ceftin, Ceftin, Ceftin.  I lost count after 18 months (3 months here, 6 months there ……).   He asked me if I was treated with other medications and listed some, including one I can’t recall that contains Quinine.

So it sounds like some people in the medical community have quietly alleged that I might still be infected — whether through maltreatment or through not being properly ruled out again.  But this is what I despise.  There is NO protocol at a higher level for doctors to follow.   Hence?   No one is on the same page.  It also seems like one line of treatment might be effective for one person but not for another.  I think this should be studied, too, so that there can be a Plan A, Plan B and so forth.

I googled “Lyme Research Grants” and came up with multitudes of monies offered to people who have a good game plan and proper qualifications.  While I think we’ve come a way since my diagnosis in terms of education, I think there’s a lonnnnnnnnnng way to go.    And with all these research grants out there, why are we still ‘here?’

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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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17 Day Diet Take Two – Day 15

I have probably been making too many little concessions for myself.

Today I made curried chicken with green peppers and onions, summer squash and zucchini. Yay. GOOD.

But ……. I felt compelled to have a tiny helping of jasmine rice. Technically I am supposed to do this sort of thing on day 18, but I did not go all out and count today as day 18. That was the only faux pas.

Looking through the back of the book, I noticed “Cultural Considerations.” There is a new list of veggies for Asians. There are different foods for Indians. It permits “fresh cheese” under Hispanic. Fresh cheese. Hmmm……..

So I had eggplant parmigiana with FRESH mozzarella (the wet kind …. not the freshly-purchased “normal” stringy kind from a pizza joint). Oh and it was lovely. Homemade marinara from chunky red tomatoes, caramelized onions, garden fresh basil ……. and eggplant. I recommend baking eggplant rounds at 425 F for 15-20 minutes so it gets crispy and even a little charred looking around the edges. THEN put the sauce and cheese on and turn down the over to 350 F until the cheese is melted. This way it does not get too mushy.

Mmmmmmm

Another concession. I’ve been forgetting the green tea. I adjusted last time. It’s not THAT. I just forgot to bring it to work once. I forgot to have it at night once. Poof. Habit broken.

I’ve been drinking diet soda. I have two diet pepsis at work [harm reduction! It’s down from like 6!] and an A&W diet root beer at home at the end of the day. That gives me a whole lotta ahhhh. I’m a recovering alcoholic – 9 years at this time, God willing I’ll keep at it – and it gives me that reward thing at the end of the day. The ahhhh that I thought I was getting with beers and boozes – but sans the amnesia, headache, nausea and bad decisions. BUT. I do make it up with extra water. One diet soda is a negative water. Two waters become one. Six waters become five. So? I go crazy with the water to make it up.

One night I had a SMALL piece of steak and one ear of corn. My Achilles Heel is bread, pasta, cake. I have abstained. I also have abstained from Dunkin’ Donuts’ large ice coffees with cream and sugar. THAT has been tough. I have had two medium ice coffees with cream , no sugar. That’s something, too. It was more like “social drinking” in terms of coffee, though. 🙂

So here I am. Thirteen pounds lighter, more energized, very nearly pain free, and in good spirits. I see a rheumatologist in a couple more days.

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17 Day Diet Take Two: Day 10 – and Info about Leaky Gut Syndrome

I have not update my progress in a while. So here I am!

I have lost 12 lbs. Six pounds were in the first two days, so I’m trying not to think of timelines and feeling discouraged by the daily ounces I’ve been losing.

The other day at work, the elevator was broken. I work on the 5th floor. Miracle of miracles: I could do the stairs!!! Toward the end of the day, I had to back down some of the stairs because my knees were rebelling, but for the most part I was up to it. I probably did the 5 flights of stairs FOUR or FIVE times.

I mowed the lawn the other day, and if you’re a regular reader you may be aware that I have done this before. Well? This time it didn’t feel so much like work and I did not have to uncurl my hands afterward.

At the end of a day I sometimes feel very sleepy, but it is the kind of sleepy one feels after having worked and not the Lyme-caliber fatigue. My headaches are gone. My tongue is now PINK and not white (an indicator of internal candida). On occasion I have had a little jab of nerve pain. Another improvement is my menstrual cycle. It is less heavy and clotty [TMI? Sorry!] I have cramps again, which is bad news in its own right, but a spin of normalcy on anything I do is GOOD.

In six days I am scheduled to see the rheumatologist and I do not have much to report. My singular symptom – that’s worsening – is floaters. The computer screen looks like it’s pulsating and moving with “molecules” and squiggly lines. I don’t know if this is some sort of herx reaction? [PS. Forgive me if there are typos in here or little grammatical hiccups — I am relying on the red squiggly underlines to tip me off because it’s difficult to read lately ]

What I’m wondering is if I have a food sensitivity as well. I have read a lot of about Leaky Gut Syndrome, happening upon the condition by accident during my research. If you’re wondering what “leaky gut syndrome” is, it’s damage to the intestinal lining. How does this tie into Lyme Disease?

Some Leading Causes of Leaky Gut:
1. Lots of antibiotics
2. Lots of NSAID medications such as Naproxen or Ibuprofen
3. Caffeine

Lots of us lymies are “guilty” of that. Don’t we sometimes get carried away with the caffeine when we’re in a big bout of fatigue? Don’t we take pain medications for our joint pain and other malaise? Antibiotics go without saying. I, myself, lost count after 18 months (3 months here, 6 months there).

When the lining of the intestines are in good working order, they have little gaps in the cells that permit vitamins and nutrition to seep through into our blood stream. When they are damaged, the cellular gaps expand and other things can get through such as food particles and gut bacteria – both good and bad.

Symptoms are often confused with food allergies, MS, Rheumatoid Arthritis, and skin conditions.

Leaky Gut Symptoms:

1. Bloating
2. Gas & cramps
3. Abdominal pain
4. Joint pain
5. Neurological symptoms
6. Food sensitivities
7. Acne
8. Fatigue
9. Brain Fog
10. Constipation
11. Heartburn
12. Gum Disease
13. Depression
14. Autoimmune Deficiency
15. ADD
16. Dermatitis such as Eczema and Psoriasis
17. Headaches and migraines
18. Systemic Candida (nail fungus, etc.)
19. Colitis
20. Celiac Disease
21. Thyroid conditions
22. Crohn’s Disease
23. Arthritis

Here’s one article about it: [if link fails, try to copy and paste this: http://www.leakygutsymptoms.com/%5D

Notice that the symptoms increase in severity?

I have read many articles about it and the consensus seems to be:

1. The symptoms – and that they increase in severity
2. Treatment – Addresses the CAUSE of the intestinal permeability. Often it has to do with nutrition. This is like an elimination diet so that the intestines may heal. This is a good resource: [links sometimes fail me! If this doesn’t work, copy and paste: http://www.liverdoctor.com/liver-problems/leaky-gut ]
3. The medical community seems divided over the authenticity of the existence of Leaky Gut, so treatment usually falls on the patient or the Holistic / Natural Medicine community

I am mentioning this because if you are new to Lyme Disease and are on antibiotics then you may want to consider going on a cleansing diet to prevent this happening to you. If you take lots of antibiotics and eat lots of refined foods, sugars, yeast, wheat, et al, you are feeding the bacteria you are trying to kill and also making a happier home for yeast inside your gut. Make sure you consume plenty of probiotics, and try to consume ones with MANY different cultures not limiting yourself to the typical acidophilus.

What Made Me Happen Upon Leaky Gut?

Well? I was at work with a client the other day and my mouth became very dry. I could not get something to drink that very moment so I grabbed a couple of mints on my desk. The mints came from our Health Insurance company in a package with their logo so there was no list of ingredients and such. I suspected they may have sugar, but they’re the size of baby aspirin and I was THIRSTY. It brought me relief but I almost promptly became bloated. My stomach, by the end of the day, was rather distended. The mint was certainly the trigger.

I googled “mints and bloating” and came to find Sorbitol is a common ingredient that many are sensitive to and that it causes bloating. Here is an article if it interests you: And here’s a copy and paste option for you: http://www.foodintolerances.com.au/food-intolerances-sorbitol.aspx

Reading about it over and over, I came to find the term “leaky gut syndrome” attached. That led me on another tangent.

So here I am. Perhaps it is leaky gut. Perhaps it is not. But I am DEFINITELY doing better physically on this diet. Mentally too. Emotionally too. I highly recommend it!

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