Bloody Lymey

A Blog About Living with Lyme Disease

Existing

I’ve been going through a medical thing now that doesn’t have to do with Lyme, that I know of, but the fatigue is equally debilitating and oh, so familiar.

(You can skip this part – just boring details about why I feel the way I do ) My thyroid has been off – and I have labs to support this.  My doctor referred me to an endocrinologist which they don’t seem to bother much with for hypothyroidism.    They did an MRI on my pituitary, too.   I’m 44 and I’ve started having premenopausal symptoms – hot flashes, night sweats, erratic monthlies…..

In the end of February I had my appendix out.  It seemed an ordinary but painful situation, exactly as it has been recounted to me through others before me.  Excruciating pain, lower right abdomen.  In I went.  Out it came.

I saw the surgeon for follow-up, expecting him to inspect my incision, smile, pat me on the head and wish me luck.  He sounded expectedly light, asking how I felt and whatnot.  He looked at the incision and nodded, saying it looked like it was healing nicely.  I nodded, too, tugging my shirt back down over my big belly.

He sat down and frowned.  “Let’s talk pathology now.”

That was a strange word.  Pathology.  I heard the c-word and tuned out.  My mouth opened and I was staring.  Cancer.  His lips were still moving and he was nodding emphatically.

“…They removed the cancer along with your appendix and there is no reason to think it had spread……”

I asked about the appendix being “perforated.”  That’s what the report said.  He smiled and shook his head.  “You’re not at risk,” he smiled reassuringly.  “No need to follow up with anything.”

But follow up I did.  My PCP referred me to an oncologist to be sure, adding “I’m very certain it’s all out, but I’d rather hear it from oncology.”  She said the type of tumor I had, a carcinoid, sometimes disrupt endocrine systems and she wondered  if I might start feeling better.  I read more about it.  “Carcinoid syndrome” is what it’s called.  Fatigue.  Bloating.  Erratic BM’s.  Flushing — flushing?!  My God, my face keeps turning beet red, even when I don’t feel hot or like I’m having a flash. People have commented on it , and during those times I would have been none the wiser.  It all made sense.

It’s been over a month and I’m not feeling better.  The oncologist was optimistic, but is going to conduct scans this fall and follow up with me, then track me.  The place is affiliated with Dana Farber in Boston.  Certainly trustworthy .

OK – Back to the fatigue!

I could sleep 10 hours at night and need a nap in the late afternoon/early evening.   Sleeping does not refresh me for the most part; it simply feels like a respite from being tired.

I read something about Chronic Fatigue where sufferers describe how it feels.  One lady wrote something about how it feels like you’re a cell phone on 0% and you plug yourself in overnight to recharge and you’re surprised to wake up and find you’re only up to 9% and can’t get it charged anymore than that.  You spend the day trying to budget this 9%.

Yes.  That’s exactly it.  And it’s a lot like the “spoon theory” that I refer to a lot . If you’re not familiar then here:  spoon theory

I feel as though I’m trying to constantly budget that 9% charge or those 15 spoons.  Lately going to work feels like it is more than 5 spoons, though.  It feels like 12 and I struggle to budget the last three. So …. I buy us takeout instead of grocery shopping or cooking dinner.  Then I lay down.  Sometimes I sleep.  Sometimes I get another spoon or two out of laying still and watching TV.   A phone call from a friend may go unanswered because even if I enjoy talking to them it feels like a spoon is spent and I may need it to run a load of laundry or help my son with a problem he’s having.

I had someone email me if I could attend her baby shower because I didn’t RSVP. I didn’t RSVP because it’s hard to make plans,  and I rationalized that after more time passed from the surgery maybe I would feel better and be able to answer YES with some semblance of certainty.  Of course I complicated this damned thing , but she was very understanding.  I can go and make an appearance.  I can opt out at the last minute if I’m totally debilitated.  I can go and stay if it’s a magical day and sitting at a table doesn’t cost me too many spoons.  I don’t know why I view these invites as obligations, as duties, that I’m either 100% in or I’m 100% out.  I think I should just be honest with people about what’s going on and say “I’ll try.”

spoon theory 2

But it doesn’t help that I don’t look sick.  Not at all.  The flushing gives me a beautiful, healthy glow. People are commending me on my coloring.  I’m gaining weight with all of this. Partly the thyroid.  Partly my bad eating habits due to the debilitating nature of the fatigue (take out several times /week is not healthy ……. high calorie, high fat, high sodium.  Only so many times one can order salad, right?) The fatigue also poses a barrier to exercise. I used to be a fitness freak.  A high-energy fitness freak.  Exercise felt invigorating. Now it is an expense of spoons and could cost me calling out of work or oversleeping and not getting my son to school on time (I’m not exaggerating).  Truth.  And if I was skinny and telling people I couldn’t help it , they wouldn’t doubt me.  But I try not to talk about it.  I don’t want to see the tight, polite smiles and the slow nods.

Today is Saturday, no work. I spent today resting. I went out to lunch and just the drive took a lot out of me.  I don’t feel like I’m living. I feel like I’m existing.  I want to have fun. I want to go out of town. I want to go for a hike.  I want to do so many things.  Going to the grocery store has to be carefully considered.  My house is a mess.  I’m not a clean freak by anyone’s standards, but I like to not feel embarrassed if someone swings by without calling.   I prioritize the cat litter and the dishes – – the smelly stuff.

I had one 5-day stretch where I felt pretty good. One day I felt OUTSTANDING.  I had a high energy day and did as much cleaning as time allowed.  I took my mom for a ride.  Then the next day I fulfilled a bucket list wish:  the St. Patrick’s Day Parade in Holyoke.  It was great.  Driving there, standing, driving back …. I could do it.

Since that stretch I feel less tolerant of, less patient with this fatigue.  I get teary-eyed sometimes.  I have a lot of living to do.  I love doing day trips to Boston or NYC.  I was promising my son one for months, and finally splurged on an overnight because I knew I couldn’t drive there and back in one day and do what we planned to do.  That was in January.  I want to lose weight and don’t have the energy to do anything to help with that.  I want to spend time with my family, quality time, but seem to fall short.

I should also maybe badger my PCP & endocrinologist. I don’t even know how long it takes for one to feel better after having a carcinoid tumor removed. Should I have felt better by now?  Do I need to give it another few weeks or days or months?  But badgering costs spoons.  Some spoons are worth the sacrifice.

I know there’s a life lesson wrapped in all of this.  I’m just feeling impatient and wish I could learn it and move on to learning more about, ohhhhhh…. winning the lottery and traveling the world.

There. I’m done whining.

 

 

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Magnesium: necessary mineral (and possible treatment protocol ? )

I have heard numerous times that we Lymies suffer from low magnesium and there is great debate over whether it is authentically lower magnesium levels or whether our symptoms mimic those of someone with depleted magnesium levels. I have also read that the bacteria itself siphons magnesium from all of us for its own benefit.

There is also a Magnesium Treatment (and because I’m posting it does not mean I am in any way endorsing it. I never tried it.  Likewise, by having stated that does not mean I am against it):

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

(Source:  http://www.lymeinfo.net/magnesium.html)

I have tried many supplements and many I have swore by only to find they seemed less necessary when I ran out of them. The one supplement I swear by, and have for many years, is Magnesium.  When I run out of it, my body tells me I need to get thee to the store by making me constipated and causing me to grind my teeth at night.

Here are some benefits to having par levels of magnesium:  http://www.lovelivehealth.com/10-amazing-ways-magnesium-heals-your-body-and-mind/?utm_source=facebookads&utm_medium=cpc&utm_campaign=fb_magheal_b_us

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Beauty, Self Worth, Changing Bodies

Hi .  I haven’t written anything in eons, but thought I would share a link to an incredible article:  http://hypothyroidmom.com/its-a-beautiful-thing/

It is written for women with hypothyroid – Hashimoto’s , but I know one of my #1 search engine terms that gets people to my blog is “why does Lyme Disease cause weight gain?” It impacts all of us, I think.  My specialist attributed my Hashimoto’s thyroid to my Lyme Disease.  Maybe that’s what happened to you? I think my gut took a hit from all the antibiotics and that hurts my weight, too.

Please read this article, though. It seems shallow at first, but it gains momentum and has a happy ending.  Very worth the time.

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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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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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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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The Mystery of Flareups

Each and every damp and rainy day for the past month has tortured me from within. The achy bones from the tips of my toes to the top of my neck. And? It’s untouchable. The best I could hope for is for Naproxen or Ibuprofen (or both) to ease it a little. A bath with epsom salts would make my joints more forgiving.

After a dry weekend, I woke up to rain today. Looking out the window, I rubbed my eyes. I stared in disbelief at my painless hands, bending and flexing my fingers in wonder. Why today? Not that I’m complaining. Just …. what did I do right? Is it really this random?

And what did I do some three years ago when I had a remission of 10 months? What was so special – just so I can do it again?

So thankful for this day. It was a pinch balmy and I wandered out into the misty drizzle and enjoyed its refreshing spray in my face and the dampness settling into my hair. It seems like eons since I’ve enjoyed rain – from its feeling to its smell and the way it perfumes the pavement, grass and lilacs. What a beautiful day indeed.

There. Short and sweet. That’s all.

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I’d Rather Show Smiles than Sjogren’s

Of course today was my doctor’s appointment and I was FINE. A topic came up: Sjogren’s Syndrome (Pronounced: “Show-grins”).

“Why?” You ask?

Well. I mentioned my sweating – or lack thereof. I haven’t mentioned it before because …. it’s natural to go to doctors with COMPLAINTS. Feeling confident, confident, dry and secure on a hot and muggy August day when my friends have damp curly hair and wet underarms isn’t such a bad thing. Is it? But …. I brought it up. She asked me some other questions. Yes, the heat does bother me sometimes – even sans sweat. Headache? Why yes! For two days with neck pain. Dryness? Well….. I’ve been a thirsty person since I was born. That’s my baseline. I wake up sometimes with dry eyes – like anyone! – and blink a few times and it passes. But my eyes …. pressure and sometimes blurry. [I told her during my last visit when my complaints were neurological]. Neurological. That sounds more like Sjogren’s than RA – and she’s going to test me for that, too, since my last test was four years ago.

I read about it and a website mentioned the metallic taste. Hmmmmmm. I’ve rassled with this one for years. Sometimes my coffee tastes horrible. Sometimes I’m bitterly disappointed in Dunkin’ Donuts. And my coffee maker at home. And Starbucks. How can they ALL suck? Well. It’s not them. It’s me.

Reading more about it, it might explain better the horrible progression of my teeth. Two dainty lil’ cavities and my teeth are rising far above my gum line and the dentist has used the term “bone recession” with regard to my jaw. He said it doesn’t flush with the condition of my teeth. The lady who did the “deep cleaning” told me to expect it to take a long time. It didn’t. She was amazed by how “clean” they were below the gum line, adding it didn’t match my x-rays. Two puzzled dentists. Two.

So the plan: I’ll be tested for a rash of things – but not a rash itself – in the next fiscal year (starting July 1st) so I’ll pay one deductible for alllllll these services. Why pay one thou’ when I can shell out a mere $500? A mere $500. Har har har. Yeah, I’m miss money bags [not at all]. But it sounds better than $1,000. No commas. No commas are GOOD.

And I’m going to be referred to a Rheumatologist. And that sounds good to me, just to have a second opinion (and my brilliant and aggressive Dr. C. used that term).

I’m glad I felt good. I don’t think this doctor has seen my everyday non-sick self like …. EVER. I could also articulate my symptoms better than I might have last week when I had that massive brain fog.

So, I’m back to wondering what’s going on.

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