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.

 

 

3 Comments »

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.

Leave a comment »

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.

Leave a comment »

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)

 

6 Comments »

Remission …. There’s Plenty to Be Said For It!!!

Am I in remission now? Nooooooooo! [Stomping my foot, folding my arms and pouting]

But I was blessed with [I think] ten months of such a thing. It gave me hope. HOPE. You know what seemed a precursor to it? A crush. It sounds silly, but it was the first such crush I had experienced in years. When I say “crush,” I mean the heart-pounding, shaky, giddy, glowy kind.

You know what came next? Something that hadn’t happened in a while: adrenaline. If there was some kind of a confrontation or other cause for fight or flight, I would feel adrenalized like I had years ago. That shaky, charged up response.

There were times at work where my Lyme-induced hypothyroid seemed in overdrive. My face would flush and I couldn’t sit still. Working in a shelter at the time, it was cause for more physical work such as room searches. Desk work was NOT my forte those days.

In a couple of months, the crush that I started dating turned out to be a colossal jack ass. He was gone. Yay.

The energy, the painlessness persisted. I started to speak of it in the past tense. I thought I was OK. Permanently OK. For a weekend, I felt fatigued again. This time, it felt more like my thyroid and I’ll tell you why: I was cold. VERY cold and it was springtime. My son asked when we would get air conditioners. He was six. Out of the clear blue sky and some desperate nights on Google, I found an idea: Vitamin B. I tried a multi B complex and felt the familiar headache of my blood pressure returning to normal. My energy was back. I was back.

Again – no pain. No bed-ridden days. No lost evenings on the couch in a semi-conscious haze. This bliss lasted for months. Again – Lyme was something I spoke of in the past tense.

When the bell curve curved back in favor of fatigue and aches, I was going to Vegas. Mmmm. Full body heating pad. Dry heat. Energy. Painless with the exception of jacked up A/C in a restaurant or casino. Stepping outside resolved this. Feeling good lasted for a couple of months after I got back.

I got into a new relationship and there were weak knees – the good kind! – and heart palpitations (the good kind!!!) and I hoped this would stump my adrenal system into keeping me better and maybe improving me. But I was back in the specialist’s office (after having graduated some months before). I was back on Ceftin. And now the yeast infections were something to write home about again. I kept this under my hat because I feared some “insider trading scandal” with people buying shares of Monistat.

Now she tried Low Dose Naltrexone. False hope was reinstated. Two days after the first dose, I felt so good that I cried when people asked how I was doing. I thought maybe we got it now.

And I’ve been having ups and downs ever since. More downs than ups, but the downs are not nearly as far down as they were in 2008.

Does anyone recall periods of remission and being able to attribute it to something? I’d love to hear from you!!!!

Leave a comment »

Metallic Taste in Mouth

When I was on a particularly heavy course of antibiotics, I remember struggling with my coffee maker. It was a cheap no-name brand purchased God-knows-where. It was luminous with a blue light bulb inside that lit when it was percolating. This baby had a timer; I could wake up to coffee brewed and the silence of my housemate sleeping. Loved it. But it turned on me. My coffee kept tasting bitter/metallic. I cleaned it with vinegar – thrice. I soaked it. I soaped it. I rinsed. I repeated. I bought a new coffee pot. Same issue. Bought new coffee. Same issue. Switched brands. Stopped using my favorite travel mug, lined with metal. Bought Dunkin’ Donuts coffee. Bought Starbucks. Everywhere …. yucky and bitter with that metallic taste.

I noticed food wasn’t tasting so good – I mean, this was a pretty gradual thing. My doctor said it might be the meds. It took months after completing the course of antibiotics before things began to taste normal.

Well? I’m not on antibiotics, and it’s happening again. Coffee has that metallic taste. I made stew that had a bitter taste to it. I thought the tiny splash of Balsamic that I added was perhaps no longer good. Tonight I made roasted potatoes and the olive oil (which has a full year til it expires) smelled bitter and metallic. Yeah. It’s happening again. It’s a condition known as “Dysgeusia.” Reminds me of the word “disguise,” like the tastes of my favorite things are disguised. 😦

I’m not sure what causes it (in OUR case) or what the treatment is. I did read that antibiotics may be a cause. I also read that Lyme itself causes it. Other causes listed included “low calcium.” Lyme disease sometimes prevents the thyroid from properly functioning (even if your T3/T4 tests say otherwise) and when this happens, we have difficulty metabolizing essential vitamins and minerals. I might lose my teeth because it was like I had had ZERO calcium for well over a year. It’s possible that this low calcium condition may have been caused by Lyme itself.

Other articles suggest that copper toxicity may be a cause – drinking tap water regularly when you have copper pipes or consuming food prepared in copper cookware on a regular basis. It could also be a co-occurring infection – many of us lymeys are more susceptible to other infections and a culprit could be additional bacteria and/or fungus.

Having perused some message boards (my favorite place for homeopathic remedies because they’re usually written in firsthand accounts), I noticed some suggestions (and CHECK with your DOCTOR to make sure it’s alright for you!):

1. Baking Soda in the mouth to cleanse the palate
2. Brushing your teeth at least twice a day and maintaining good oral hygiene (duh)
3. Add salt and baking soda to your toothbrush and brush with this mixture once/day (sounds like the salt protocol – that salt antibiotic with the alkalizing baking soda …. hmmmm …… )
4. Vinegar (may produce more saliva and negate the metallic taste)
5. Citrus (same approach as above)
6. Remember to brush your TONGUE when you brush your teeth
7. Eating raw condiments such as cloves and cinnamon
8. Some sites suggest taking Zinc – sometimes a deficiency may be the culprit and if not, it can boost the immune system and fight something that may be going awry.

A good website or two about this: http://byebyedoctor.com/metallic-taste-in-mouth-symptoms-causes-treatment/

http://en.allexperts.com/q/Medical-Research-Internet-1426/METALLIC-TASTE-MOUTH.htm

3 Comments »

Sugar Sweetens the Sourness of Lyme ….

I have NEVER been much of a sweet tooth. I could always eat birthday cake compulsively, but aside from that? I never thought much about chocolate, exceptions being intense bouts of PMS. Hmmm. Hormone-driven, right?

I know that Lyme disease has tinkered greatly with my endocrinology. I mean, it has led to my Hashimoto’s Thyroid – my body fights the thyroid hormones because they are shaped like the bacteria that causes Lyme Disease. I almost never feel adrenaline anymore. Having worked in a homeless shelter where there were dangerous situations I had to take care of (sometimes until the cops came because they were THAT dangerous), I know this to be true; my adrenal glands should have been flooding me with the thundering whitewater of “fight or flight.”

I sometimes have sugar cravings and wind up crashing after, sleeping for hours. Sometimes a big dose of carbs will do it. Interestingly I found this article about chronic fatigue, sugar cravings and cortisol:

http://chronicfatigueandnutrition.com/insulin-resistance/sugar-cravings-2/

I will say that sometimes I take cinnamon capsules and biotin to help metabolize sugar

*Remember I am not a doctor and do not offer medical advice. Sometimes I note things that have worked for me *

Leave a comment »

Raynaud’s – It’s that Time of Year

Do your hands sometimes turn blue and feel so cold they hurt? Mine do. It seems the worst during the change of seasons.

This circulation problem is an autoimmune malfunction called Raynaud’s Syndrome. It’s also called Raynaud’s Disease. Another term is Raynaud’s Phenomenon – though anyone who experiences it probably wouldn’t use the word “phenomenal.”

My specialist said that several things contribute to susceptibility to it:
1. Family History
2. Lyme Disease
3. Hypothyroid

I have all of these and the hypothyroidism was caused by Lyme (I have the autoimmune one).

Yesterday I got in my car and touched the steering wheel. My hands were freezing. I wore my flip-top mittens (when you flip the tops off, you wear fingerless gloves). I find this tool to be invaluable because sometimes if my hands warm up too much or too quickly then they hurt in a different way – a burning sore way.

Once I had this happen in the peak of summer when I was in the produce section of the grocery store selecting a cucumber. I mean, they’re KINDA chilled, but not in a cooler or anything. Another time I went to shake someone’s hand. He laughed and yanked his hand away, staring at my hands in disbelief. “I diagnose you DEAD,” he chuckled.

My symptoms seem to be the worst in the fall when there are huge fluctuations in our New England temperatures. Sometimes it’s in the 70’s by day and hitting the 30’s by night.

Carrying mittens means the world. Also putting my hands against my tummy under my shirt – even though my warm skin HATES that.

Leave a comment »

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.

Leave a comment »

17 Day Diet & Lyme Disease: Day 3

I can’t believe this: my stomach is smaller. I feel like I’m in a movie. The pajama pants I wore last night fit okay last night – not too snug and not too loose. Today they’re kind of loose. They’re elastic waist, so it’s not like they have a kind of snug waistband that starts to loosen up the longer you wear them and move around in them.

What this has to do with lyme disease: I know I have PEED like crazy. I know a lot of the water-retention came about with my 2000 mg/day antibiotic regimen in the fall (that, too, was like a movie …. my stomach seemed to grow a foot in diameter overnight). Usually it takes me a few months after getting off of them and then it seems like I just suddenly start urinating. I haven’t been able to get there. The last time it took a long time, I started urninating a lot at the 5-6 month mark. I am far past that, so I’m taking matters into my own hands.

The 17-day diet author concedes that a lot of the initial weight loss is water (so there’s not so much hocus pocus). Supposedly the diet leads to rapid fat burning. We’ll see.

For now, I just want to “feel better.” Today I woke up feeling wayyyyy better. I’m not craving bread like I was the first day. I’m not dying for a diet pepsi (the caffeine headache on day 2 was pretty unreasonable!).

I am already having daily bowel movements and they are neither violent and runny nor a struggle to pass (TMI? Sorry …. just being honest). Frankly, I was scared that I’d wind up with diarrhea every day and (with the new job this week) wouldn’t be able to see this through.

I can’t believe the changes. I haven’t felt this energized in years.

The other thing! I am SWEATING. I have written in here periodically about sweating and how unaccustomed I am to it. I was elated over a bit of dew on my forehead and in my hairline. Yesterday my hair was wet and so was my shirt. I took a second bath yesterday because I felt “gross.” In not sweating, I didn’t feel like I ought to be necessarily. I was too cool to the touch to feel like I was going to have heat stroke. I don’t know if it’s linked to my thyroid, but what ever it is, it’s being corrected. (I’ll admit that staying dry and clean on hot and muggy days was pretty convenient, but I knew it wasn’t okay).

Yesterday I played TAG with my son. My knees didn’t scold me. My energy level didn’t rebel. His legs got tired and he has asthma so he was panting after not too long, but I outlasted him. That felt good.

I’m supposed to exercise for 17 minutes daily (I think just because it’s easy to remember). The first day, this was impossible. I was caffeine-deprived on a grand scale and the lack of sugar had me feeling rundown. On day 2, I could hardly wake up – though after I tapped the black coffee I felt way better. But now I am bustling with activity.

I start my job today, the first day, and my mental clarity is a blessing. I can’t get over it. There’s no fog or “clutter” – and there has been for weeks. (It seems like my brain has been fluctuating from being in a fog to some kind of sharp-focused clutter where it’s hard to grab my thoughts).

I don’t think the diet is a cure for lyme disease, but I think the specialist was right about going low-glycerine. She tried to explain it to me and I DID buy into it, but I wasn’t ready to make a change. I don’t know why there was a parting of the heavens for me and I was ready to change, but I’ll count my blessings.

I kind of cheated yesterday. There was an ethnic fair in town and I went with my boyfriend. The main thing to do there is eat. I had chicken wings and ribs – NO corn muffin (wow, those were some hard words to say out loud to the lady in the tent!). Ribs aren’t on my menu yet and wings aren’t the part of the chicken I should be eating. AND I imagine there is lots of sugar in the barbecue sauce it was made with …. but I think not succumbing to a dessert or to bread was good for me. I can keep on keeping on.

I also am keeping close to my brain the struggle I endured the first day. I NEED to remember it’s easier to keep doing this than it is to start over again. (Just like in AA they say it’s easier to stay sober than to get sober – and their principle of “one day at a time” helped tremendously…. I had to get off of focusing on having a FREAKIN’ piece of bread and a FREAKIN’ diet pepsi on day 17… ha, ha).

While I’m not meaning to imply that I have found the cure for lyme disease, I’m simply stating I think that diet can play a role in how well or not well I’m doing.

I know in low days I just crave sugar. And it’s funny, I was never a big sweet tooth. It seems there’s some chemical reaction in me , something beyond the nice taste, that gives me a false sense that it’s keeping me going. It might pick me up for a little while, but the subsequent crash probably worsens the fatigue. The ups and downs from sugar just aggravate my symptoms when they’re there.

It’s only day 3, however. This doesn’t make me a diet or nutrition expert suddenly. I’m just documenting the changes – partly so I’ll have something to refer to. Partly so maybe it can help someone else.

Leave a comment »