Bloody Lymey

A Blog About Living with Lyme Disease

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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Meningitis ………..

Sometimes we Lymies get it. So what is it? It’s basically an inflammation of the membranes surrounding the brain and spinal chord. It is said to look like this:

Many bacterial infections cause meningitis – the bacteria gets into the blood stream and makes its way into the cerebrospinal fluid.

Of all the Meningitis, the one caused by Lyme seems to be the least likely to be fatal, and is often the least severe (the least severe …. that’s cold comfort when you have that headache and it feels like every prism of light is a shard of broken glass impaling your brain ….). It can be caused by viruses, too, and more rarely fungi (this is more likely to be a problem for the elderly or people with compromised immune systems such as found with HIV or people taking immunosuppressant drugs). Sometimes cancer may cause it as well as reactions to certain medications.

My jaw dropped when my specialist listed it among my symptoms/side-effects/troubles,etc. It’s a scary word, isn’t it? Meningitis. It sounds like something that will require surgery or a hospital stay … or perhaps a meeting with a lawyer to discuss the will. If you suspect you have it, definitely get treatment! Some symptoms include:

1. Fever
2. Stiff neck
3. Severe headache
4. Sensitivity to light
5. Vomiting
6. Nausea
7. Extreme sleepiness
8. Confusion
9. Seizure

Bacterial Meningitis is treated with antibiotics – and so is Lyme Disease. This may account for why people who contract Meningitis through having Lyme find it less “severe” and less “life-threatening.” (I put it in quotes because that seems to be the consensus in my research – not my idea because I’m not a medical professional and I know NOTHING but what I read).

Diagnosis is confirmed with either an MRI, CT Scan or a Spinal Tap. Often the Spinal Tap is how they confirm if there is any uncertainty; what they look for is an increase in white blood cells and a lower glucose level. This may be necessary, too, to determine a course of treatment (viral Meningitis can not be treated with antibiotics, obviously).

For me? They didn’t do this. My specialist saw that my symptoms were responding to antibiotics – which is what they would have used to treat me for Meningitis – so my “diagnosis” is not carved in stone with absolute certainty. But I will say – whatever has caused it – that was an indescribable headache. Simply epic. It had a cold, steely, twisting, impaling quality. I can’t even describe it. And the neck stiffness was incurable. Sometimes we sleep wrong, but moving around and time eases it. Nothing touched this. No over-the-counter meds, no exercises, no hot baths, no level of relaxation … it really was extraordinary.

Another reason that she thinks I have had Meningitis is that I grew up with ADD (of course I’m kind of OLD so they didn’t have a name for it …. just names like “unmotivated,” “lazy,” “day-dreamer,” “lack of focus ….” ) and since having Lyme my symptoms have dissipated. She thinks the swelling may have “altered” something.

My ADD is not entirely “gone,” I don’t think. I can still be rather disorganized, but nothing to the extent that I was before. Miraculously I work in Human Services now. There is NO way I could have listened to clients the way I can today. There is NO way I could have completed my paperwork so efficiently. There are not too many things I can say about Lyme Disease that are GOOD. But this is one! I do not miss the racing thoughts …. though I miss the insane creativity I once had.

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Tonic & Lyme – Nerve Pain / Neuropathy

The universe has aligned today. This is WEIRD. I was speaking with a coworker today, a lady I like but don’t know too well. She has no clue about my Lyme Disease and symptoms. An offhanded comment went like this,” ________ has nerve pain – just SHOOTS up her legs. But she responds well to Quinine, so sometimes I run and get her tonic water, then she’s like a new person.”

I made a mental note. I have not had nerve pain for the past week or so (which is not long at all, but feels like a blissful eternity), but realized this is a solid cue to stock up. Because I was at work, I didn’t obviously run right out and get it. Then I stopped thinking about it.

As an Employment Coordinator, I help people with disabilities get work and sustain it. Today I had to meet with a client who has a job in the grocery store. As I was leaving, I walked past the end of the soda aisle where there were heaps of tonic water on sale. HEAPS. When does this ever happen? LOL! I don’t remember ever seeing a big push to sell tonic water! Taking it as a SIGN, I grabbed some and have it on hand for my next flareup.

Of course, it’s rainy today so that means my knees, hands, neck and back are creaky. But that’s okay.

Tonic water.

I understand that medicinal Quinine is used to thwart and/or treat Malaria. The prescribed dose is at least 300 mg; my internet research has led to varied results, but this is the minimum I had read about. A single serving of tonic water contains anywhere from 20-40 mg. Obviously this shouldn’t shake me up too much.

People with sensitivities should NOT try it: http://www.peoplespharmacy.com/2009/04/21/how-safe-is-ton/

I read about allergic reactions that could include simply numbness of lips up to rashes, hives and swelling of the throat. It can follow another track, however, and lead to heart palpitations along with anxiety or sleeplessness (and we lymeys do NOT need that!). So …. I give this advice (that was so freely given to me) with that word of caution.

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Lyme’s a Mystery ….

For quite some stretch, my knees have been achy. My gait is best described as a wobble. I look something like a weeble gimping up the street. Today is chilly and rainy. My knees are fi-yi-yine. Not sure why. I was walking today and nearly fainted today with the nerve pain that trickled into the arch of one of my feet. I was in the center of town alone en route to the office. NOT somewhere I want to faint.

But the pain subsided and my energy took off today. I am doing an internship at a residential place in town and they had a Thanksgiving feast today. They didn’t have enough room in the oven for warming everything, so I took pans of stuffing, squash, sweet potatoes and green bean casserole to my house nearby to warm them up. I was so thankful to be able to do that. I was so thankful to feel like I was giving. I was so thankful to be a part of and not a bystander. It felt good, so good.

My insurance is straightened out. I’m currently squeezing in some appointments for my son – his school and pediatrician – so I have to find enough time to make myself an appointment and see what the pressure in my head, the peculiarities with my vision, the change in my neuropathy, et al is all about.

Another reason to be thankful. The insurance thing. I’m thankful to be in Massachusetts where insurance is mandatory and if you cannot afford it, it will be given to you. It would be another spoke on my “I’m the 99%” wheel if I wasn’t.

Feeling good. Wish I knew why.

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As Much As I Can Chew …

Since September, I have been working about 50 hours/week between my day job and my internship. I moved. I MOVED! Am I insane? I don’t know what I would do without my boyfriend and his help.

There is a stress test one can take where you rack up points for each thing you have experienced in one year:

http://www.cliving.org/lifestresstestscore.htm

I had a score of 329 just for the past year. The stress test says to reflect on the past “year or two.” With the exception of Christmas, I think everything I racked up points transpired in the past 6 months – from the hostile work environment and being fired to my recent move and change in job responsibilities, etc.

With these changes have come some changes in my symptoms. I had a 2-week period where it felt like embers were jumping in my feet (the pain was quite stunning – it’s amazing the ways in which my own body can torture me from within). There was an episode of incontinence; I had actually just used the bathroom and was in the parking lot at school when it happened. I felt it start to happen and couldn’t stop it. If you’ve ever had to use the bathroom at a college, you know it can be a mercilessly long walk at times. Thankfully I was headed home and it wasn’t too much. My vision is inconsistent (sometimes I’m terribly near-sighted) and there is pressure in my head. Not a headache. Just pressure. I had a big lapse in health insurance and could not see anyone for it. I had to cancel an appointment with my LD Specialist.

I know …. I KNOW …. if I had kept the appointment, she would quip, “What tipped the apple cart?” She asks this when symptoms increase in severity and, of course, she refers to stress.

Most of the changes I checked off in the “life stress test” were positive changes. The job. Moving. Moving in with my boyfriend. School. But, they are changes nonetheless. I am a newbie in countless arenas.

I have to remember I haven’t bitten off more than I can chew. I have bitten off about as much as I can chew. Thankfully the house is pretty settled and thankfully I have a month and a day to go before the internship ends.

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Tired ………

I haven’t written anything in a while. The reason is that I’m very very TIRED.

I’m working 30 hours per week and doing my internship (which, after paperwork and averaging my commute to school and class time and homework and reading assignments, averages over 24 hours/week). So I’m doing 54 hours per week. And I have chronic lyme disease.

Somedays I’m just a “normal” tired – a regular Joe who’s had a long day. Other days it’s debilitating. I’m taking at least two hot baths each day.

Last week my symptoms changed. My muscle fatigue was always a very distinctive kind. My arms felt like lead and my legs felt not much lighter. Last week, my legs were shakey and weak – like I totally overexerted them, even though I wasn’t on my feet any more than usual. My arms and hands were shaky, too, like I had lifted way too many weights. The shakiness was actually quite embarrassing. I’m sure no one noticed but me, but I felt like the whole world could see. I kept my hands in my pockets a la Napoleon.

A strange sensation started in my feet, something like jumping embers. It burned, burned, BURNED but was unlike the ‘stabbed with a hot poker’ sensation I’ve become accustomed to over the past few years. The jumping embers sensation was quite stunning.

I’m scared.

I don’t have insurance right now except “Mass Health Safety Net” so that if I wind up in a fiery car wreck, I’m not going to wrack up a big debt – and someone might even save me! It doesn’t cover prescriptions (mine amount to about $80/month, which sucks to pay out of pocket but isn’t prohibitively expensive) or checkup’s with the doctor. I had to cancel my appointment with my specialist next week. I can’t afford an office visit out of pocket. And? I could obviously really use a visit with her!

My insurance problem stems from losing my job in the spring, getting on unemployment and now having a new job. Unemployment won’t cover me any more and my new job doesn’t cover people until the 1st day of the month following working for 60 days. Unfortunately I started work on the 5th of the month or something so it’s closer to 90 days without insurance.

Funnnnnnnnnnnnn.

I’ve also been struggling with diarrhea for the past two weeks. My son had it for a day so I’m wondering if it’s some viral thing that I’m having trouble kicking because my immune system is compromised.

I can’t be on the anti-inflammatory diet now because my stomach can’t seem to tolerate much more than a bagel or something bread-like. The fruits and veggies aggravate my symptoms.

I think I’ll try my boss’ advice and go for some fresh ginger.

With my illness I have good days and bad. I’ll try to keep my sanity and weather the bad times until the good ones commence yet again. I know they will. Keeping that faith keeps me going.

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Successful Treatments / Lifestyle Changes So Far

I was thinking about things that have helped me with chronic lyme disease so far and thought I should make a list with a quick summary. It’s important to note that I don’t think any of these things are a “cure” but they are things that make me feel better for longer stretches:

1. Diet – this was the one thing pushed down my throat the most and the one thing I fought tooth and nail to not do. I was happy slugging diet soda all day in stead of water. I was content eating more breads and carbs than vegetables and fruit. I rarely ate meat and was alright with that.

One day my gut seemed very big to me. It bugged the hell out of me. I spent the next few days reflecting on what changes I was willing to make. Here I am on the 17-day diet. It includes vegetables that are renowned for their anti-inflammatory properties. I have more energy. My gut is getting smaller.

2. Reiki – I was astounded by how well this worked. I was astounded by the lasting results. I felt wonderful and calm for days on end. I have only used one practitioner (a friend of mine) so I don’t know how to find a good one. I also firmly believe the secret is to have an open mind and not go there with arms folded and a scowl, expecting it to not work.

3. Vitamin B – this is a good antidote to fatigue if lyme disease has weakened your thyroid and it’s supposed to offer support for the nervous system. Lyme disease seems to have an affinity for my nervous system – from my sometimes buzzing legs to the nerve pain to the vertigo to the numbness in my hands and feet.

4. Antibiotics – Indeed, the treatment didn’t cure me. I am not lyme free. However, I think about where I was before treatment and where I was after, and it made SUCH a difference. If you are prescribed antibiotics, follow the directions verbatim and don’t stop until your doctor agrees to. Take probiotics and eat yogurt to maintain your digestive system’s health and to prevent candida overgrowth. Drink lots of water to help flush out the neurotoxins the bacteria emit when they die off (herx reaction). Get lots of rest.

4. Salt Protocol – I will say that I first started it and hadn’t read the directions completely and didn’t take so seriously what I had read. I herxed worse on that than I did on antibiotics. I am positive there is something to this. I am currently using himalayan salt when I cook instead of just swallowing a nasty spoonful. I’m drinking water. I do feel the motion inside me that the article talks about. (Google Lyme Photos for more information. Some of it sounds extreme and perhaps it is. But it’s worth trying. I recommend trying it to the letter and not trying to adapt the protocol to what you’d prefer).

5. Mental Fitness – and this may be the most important of all. I can’t say that I accept this disease every second of every day. But my sponsor in AA has helped me to see seemingly unlikely gifts in this situation. He has reminded me to just get through today. If I start thinking about how long it’s been or how long it’s going to be, then I could drive myself nuts. I can’t think that this is “the rest of my life” or “it will get worse”. I have to enjoy today. I have to talk and get support. There are plenty of well-adjusted people with chronic illnesses and chronic pain. They’re great to reach out to, even if they don’t have lyme disease. Unfortunately, I don’t always do that.

6. Low Dose Naltrexone – this has helped me tremendously. It is a medication intended to support the immune system and suppress the auto-immune response to lyme disease. I felt so much better initially that I cried. It’s used to treat MS and a slew of auto-immune disorders. I forgot what a help it was until there was a lapse in my insurance and I was unemployed and had gone without it for a while. When I started taking it again, I noticed the difference. It is tied in to dopamine-support.

7. Zoloft – I’m not depressed, but my primary doctor thought it would help the muscle fatige and exhaustion. It did. I feel more alive. They think it’s the serotonin-support.

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17-Day Diet & Lyme – Day 16

It’s been quite a week. Some ups and downs. I will say it rained a LOT yesterday and I didn’t KNOW. I was at work and didn’t look out the window and was surprised to find it raining when I left work. My knees didn’t hurt one iota!

I’m not craving carbs so much anymore. This diet is getting easier for sure.

I had a bad couple of days. I was tired, foggy-headed and suffering from the same caliber of vertigo that taunted me at the onset of lyme. And I had the nerve to attempt grocery shopping. I could NOT find the spaghetti sauce my son loves: Newman’s Own Sockarooni. I couldn’t read the labels and it seemed like every product on the shelves was on its own rocking chair and rocking out of synchronicity.

The worst: one evening I was home and doing stuff in the kitchen. With zero warning, I started to wet my pants. And I couldn’t stop. I didn’t feel it coming on. Didn’t feel like I had to “go.” There was no urgency. I’ve been scared to leave the house. What if it happens in public?

I could accept the pain and the limitations I’ve been presented with and the entire notion that I can’t control my body. THIS however is the ultimate in being out of control and it bothers me in ways I can’t begin to describe.

I talked to others with chronic lyme disease and have found they have endured the same humiliating situation themselves.

The vertigo has subsided as mysteriously as it arrived.

Because I’m so excited about working again, my head races at night and I’m getting less sleep. The departure of the peculiar symptoms seemed to coincide with the night that I fell asleep early. I’m also loosely doing the salt protocol and don’t know if there’s a connection. I haven’t had that vertigo feeling for nearly 4 years.

As for the diet …. I’m continuing to lose weight. I think it’s got to be 7 lbs or so by now. I’m way more energetic. Life is good.

I’m cooking with himalayan salt and having a bit of the stomach upset they promised in the salt protocol. Aside from that and my mysterious 2 days of symptoms, I don’t appear to be experiencing much herx.

Hopefully this continues. On top of working, I’m going to go for my internship this semester. Pretty ballsy of me!

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