And Then, Everything Changed, Part 1

The last 6 weeks or so have seen some massive changes happen in my life, some for the better, some for the (much) worse. I had planned a nice long post detailing the adrenal exhaustion, stage 3, I was diagnosed with, and how that is so common in my fellow ME/CFS patients, but since I’m in serious pain right now and shouldn’t even be using my left hand since my shoulder disintegrated on me (vicious attack of the refrigerator), and am beyond-exhausted from my mother’s moving from Fairfax to Houston (she’s on the way right now), I’m going to cram 3 posts worth into this one post. (Longest run-on sentence ever!)

So, here in as short a detail as I can get it is: Adrenal Stress/Exhaustion, Re-starting Valcyte, Tick-Borne Disease Treatment, & Shoulder Disintegration. My Mom’s Move will be in Part 2..

Adrenal Stress Syndrome & Adrenal Exhaustion:

I was diagnosed with adrenal stress syndrome, stage 2, at least a decade ago. Because of it, I was nocturnal for the longest time, the way Rhiannon is right now. Essentially, when you are in that stage, your adrenal glands don’t release cortisol (which is pretty much the same thing as cortisone) correctly, with the highest levels in the early morning hours to wake you up, slowly falling to lower levels until you get sleepy at night and sleep on a proper schedule.

Instead, your body releases cortisol at the highest levels in the evening, making you widest awake at 10pm or later, and it’s virtually impossible to fall asleep, often until near dawn, depending on how screwed up your body is. Even if you manage to knock yourself out with a sleeping pill, your brain doesn’t reach the proper level of deep sleep because the cortisol is too high.

For Rhiannon, this means her deepest, most essential to health, sleep comes between 6am and 1pm, which is why she is in online school – it was simply impossible for her to get up and function well enough to make it thru the day at public school.

I’ve progressed from stage 2 to stage 3, adrenal exhaustion. My adrenals are not releasing much cortisol at all at any time, but there’s much more than cortisol involved, as the adrenal glands regulate many hormones that control the way the body functions.

I’ve started on cortisone replacement therapy – the same cortisone as is used for so many illnesses, but at a level that is supposed to mimic what the body is supposed to be doing on its own (5mg upon awakening, and 2.5mg in the afternoon). This low a dose should avoid the many pitfalls & side effects of cortisone, although I did have a major candida flare in the beginning.

It does seem to be helping, so I’m glad I’ve started it. One reason we had not been able to re-test me for it was because I was on the Florinef (fludrocortisone) for Neurally Mediated Hypotension (NMH, aka POTS), and taking that interferes with the accuracy of results.

My LLMD also started me on 3 different adrenal support supplements.

As to why I’ve progressed to stage 3, I’m pretty sure we can lay the blame for that squarely on the shoulders of the stimulant meds (Provigil, Nuvigil, Ritalin) that are handed out to us patients so we can function. They enabled me to work several years longer than I should have, and I still take them when I make trips to the doctor or grocery shopping.

But pushing myself to get more accomplished has led to things being much, much worse!

If you have ME/CFS, I strongly recommend you ask your doctor about taking the adrenal stress test, which is a simple saliva test (you soak cotton rolls with salive 4 times a day). The test used to be speciality labs only, but Labcorp did mine, so apparently it’s more widely available. There is a TON of information about adrenal stress online, and just google it & dig in. I found Dr Lam’s site to go very indepth.

Re-started Valcyte:

As you may know, my 14 months on Valcyte came to a screeching stop when my blood cell counts fell drastically, which was detailed in Risky Decisions, or Valcyte: the Very Scary Adventure Ends.

I’m happy to report that over the course of a month, my cell counts recovered. During that month, though, I went thru a terrible EBV flare, and the HSV which lives in my back erupted for the first time in a decade or so.

My doctor gave the okay to re-start the Valcyte at 1 tablet (450mg) a day instead of 2 a day, and after about 2 weeks back on it my cell counts were fine, and the EBV & HSV flares subsided for the most part.

Tick-Borne Disease Treatment:

I had a very long visit with my LLMD’s CNP, and could write an entire post about just that. But let’s keep it short & say because I’m not entirely convinced that Bartonella is my biggest problem right now, and am not confident in IV antibiotics, I’m going to be starting on Ketek, an oral antibiotic which will get some Bart but also the Anaplasma I tested a weak positive to. Anaplasma is notorious for causing headaches, which I have in spades.

For more on the Bartonella issue you can read Shock and Dismay: Re-visiting Tick-Borne Diseases

And Then, My Shoulder Disintegrated:

14 months ago I injured my left shoulder trying to move a bag of dog food. We first thought it was “only” a rotator cuff tear, but as time passed & the pain continued, it became apparent that there was more than that. An MRI showed I had a SLAP tear, which is a tear in the cartlidge that holds your arm bone to your shoulder blade.

As time went on, it became less painful, and because a SLAP tear repair is really difficult & involves a very tricky surgery & intensive physical therapy, I decided to just be careful with it & add it to the list of nagging issues. It was really good at letting me know when it was going to rain, and I got used to sleeping only on my right side.

But in the intervening months, I’ve continued to have muscle wasting along with the weight loss. I’ve watched in alarm as the outlines of my bones & ligaments became more visible. Lately, I’ve really noticed it in my shoulders, where muscle has faded away and body surfaces that should be bulging outward with muscle or, at the very least, flat, have become sunken & hollowed out.

I’ve tried. Everything. Protein shakes. Force feeding myself.

I’ve been so very careful.

Every single interaction with Kodi, our at-least-120 pound 2 year old dog, who we adopted last July (at 70 pounds), has been careful. I’ve played endless games of tug-of-war with him, using both hands so I could retain as much strength as possible in that arm.

But always I was watchful, knowing he could give one wrong jerk and it could make things worse. So always I had both hands involved.

But it wasn’t him that did me in.

It was the refrigerator.

I was looking for something, with my left arm resting on top of the frig door. I leaned down & tried to see the bottom shelf.

And then it happened. There was a movement in the joint, a feeling that was painful & simply wrong. I made a noise, an inhalation of shock.

I had subluxated my shoulder – a partial dislocation.

Looking in the refrigerator!?!?!?!

Luckily, I had an appointment with my PCP the next day (Thursday), and showed up with my arm in the sling.

My shoulder was kind enough to subluxate itself again as she was gently examining me. There were noises from both of us this time, since her hand was on it when it happened.

As she put it, it is likely I made a small tear into a really large tear. There was no muscle there to hold the joint in line properly. I was sent for an xray to be sure I didn’t chip any pieces of bone off but haven’t gotten the results yet.

I am beyond dismayed, frustrated, appalled, overwhelmed, and angry. And in constant pain. Every movement of my neck, hand, arm, etc, affects it.

I am also afraid.

I don’t know how on earth my poor body is going to handle surgery. Can it process the anesthesia correctly at my very low BMI & general state of dysfunction? Will it have the ability to heal? How can I do PT (which will have to be at home)?

I really, really, didn’t need anything like this. It’s hard enough just getting through the day!

And finally, yesterday the movers came, and my mom is in transit from an hour away to Houston, which will be Part 2, when I can get to it.

That alone brought a lot of changes (and furniture) into my life. Stay tuned for more!

Thanks for reading, my friends, and feel free to comment!

This Routine

This Routine is all too familiar.
Afternoon sun hits my shaded eyes
Like a boxer hitting his opponent.
It hurts.
I see it coming.

This Routine is all too familiar.
Dog claws click on floor,
Spoon taps bowl,
My muscles twitch.
I hear its approach.

This Routine is all too familiar.
Waves of nausea
Crash over me.
Wipeout.
I feel it swamp me.

This Routine is all too familiar.
Say, “I’m sorry,
“I’m going to the bad place.”
And close my door.
She knows this so well.

This Routine is all too familiar.
My day is done.
Now it is
Migraine’s day.
Out of my hands.

This Routine is all too familiar.
Swallow meds,
Zofran under my tongue.
Bowl beside my head.
Try to soften the blow.

This Routine is all too familiar.
Tummy Mint tea cools,
Spearmint oil soothes,
Stones ground me.

This Routine is all too familiar.
Curl up, stay still.
Close eyes.
Breathe deep.
Ignore the explosive pain.

This Routine is all too familiar.
Listen to the pounding
Pulse in my ears,
The neverending whine.
Soundtrack of my life.

This Routine is all too familiar.
Door opens softly,
Muscles twitch anyway.
“Is there anything you need?”
Not now, maybe later.

This Routine is all too familiar.
The neighbors’ dogs bicker,
Birds’ evening calls,
So loud I recoil.
Silence is needed.

This Routine is all too familiar.
Breathe deep and slow.
Controlled descent.
Where shall I go?
Far away from here.

This Routine is all too familiar.

Guest Post: Rhiannon Tells It Like It Is – to the SSDI Appeals Council

Today I want to share something very special with you – a letter my daughter, Rhiannon, wrote to the Social Security Disability Appeals Council, about growing up with a sick mom, and the changes over the last couple of years. She has quite the voice, my daughter.

by Rhiannon

To whom it may concern:

I am Rhiannon ******, the daughter of Kelly Collins (edit: otherwise known as Ash). My mother has been chronically ill my entire life. This is not an illness that can be understood unless you are in the midst of it all, unless you’re the one suffering or watching your loved one suffering. I am both. What must be understood is that all of the things that combine to create my mother’s illness are not things that can be recovered from. This is not the flu, one does not feel awful then fully recover. This is a lifelong degenerative illness.

How has your health changed over the last two years? If you’re a healthy person, it likely has not changed much. How has my mother’s health changed? Tremendously. She is not better, despite trying new medications and treatments. Her health has continued to decline, as is typical of this illness.

I have been living full time with my mother for the last six years. I have seen her go through everything. I have seen her almost die. Despite being young, I bear the weight of the household. Keeping up with household duties is solely my job. I am my mother’s sole caregiver. She does not take care of me, I take care of her. My mother is there for me emotionally, she is a great mother and does her best. But since the age of eleven, I have been my own caregiver and hers.

Most parents cook dinner for themselves or their children every night. My mother has not cooked dinner in years. I cook dinner for her. If it wasn’t for my efforts she likely wouldn’t eat. Frequently before I go to bed I cook something, like baked chicken and homemade mashed potatoes. I do this so that she has something to eat when she wakes up. So she has a nutritional lunch to keep her going. I do this because I love her. What if you suddenly lost forty pounds? Would that be alarming? Yes, yes in fact it would be very scary. This is what has happened to my mother. She has had an extreme weight loss recently. She barely eats because she is so nauseated all the time and has no appetite, and I do my best to insure that she has things to eat, to prevent her from starving to death.

Try imagine being in my place. When you were eleven do you think you could have handled everything I have been doing? I didn’t think so. This is not a mental illness. This is a brutal physical condition. There is no miracle cure. There are only pills to treat the physical symptoms. If a loved one of yours was suffering this much, don’t you think you’d want to do everything you could?

Reflect on something for me briefly. Can you remember the worst headache you have ever had in your entire life? The intense pain, the strong instinct to curl up in a ball and rest, sound familiar? Now imagine that intense sharp pain combined with other factors. Perhaps your pet runs gleefully down the hall. It doesn’t seem like the sound of their claws on the floor would be much of a sound at all.

However, if you suffer from migraines, it might as well be an explosion. Sound sensitivity is very common in chronic migraine sufferers like my mom. That, combined with light sensitivity, makes daily life a struggle. Most people like to sit in the sun, watch it filter through the trees. My mother is one of those people, she loves nature. However, when the migraines hit, she can not even enjoy that simple pleasure. She has to hole up in her dark bedroom, away from any light and sound. These are not rare occurrences, they happen daily. Does this sound like a person that has much of a quality of life?

Most people leave their homes on a daily basis. How often do we leave home? Weekly, if I’m lucky. It’s not uncommon for us to be almost entirely out of food before my mother feels up to going to town for a rushed grocery trip and to pick up things from the pharmacy. This isn’t because she’s lazy or doesn’t care, it’s because she is so bedbound that driving twenty minutes into town is a huge endeavor. We can’t go if it’s raining, because the wipers and lights will trigger her migraine to become worse. We have to time our trips so that the sun is not so low that it will be in her face, because of her light sensitivity. Once we are there, she waits in the car while I do the grocery shopping. Right now I have only my learner’s permit, so she has to be the one to drive. As soon I have my driver’s license and at least that will be a little easier on us.

If you were in this position do you think you could have kept going? Do you think you’d be sad and frustrated at your situation? My mother is the most emotionally strong person I have ever known. She keeps going, no matter what. Is she frustrated at our situation? Yes, as am I. It would be unreal to expect that someone with a chronic illness this devastating wouldn’t be.

After all that my mother has been through, I think the very least she deserves is to have at least one weight lifted off her shoulders. Stress only makes any condition worse. I know this all too well first hand. If we didn’t have to worry about money so much, if I didn’t have to count pennies at the grocery store, if she didn’t have to worry that we might not be able to keep our house, it would be the greatest gift. We have enough on our plates, we don’t need the continued worry of having to fight tooth and nail for what she deserves.

Sincerely,

Rhiannon ******

Risky Decisions, or, Valcyte: the Very Scary Adventure Ends

I’ve had the great blessing to meet (online) a lot of ME/CFS and Lyme/TBD (Tick-Borne Disease) patients. Many have become friends. I believe, taken as a whole, that this patient group has got to be the most medically-literate patient group around.

We have to be. There are few doctors who have a clue what these illnesses really are, or how to treat them.

So we patients bond online, from our beds: on Facebook, forums, and blogs.

We share stories, and trade information – about new studies (what few there are), side effects, and tricks & tips for living. We debate causes, deplore the lack of a cure or even a real treatment, and discuss supplements, labs, and how to live with what we call the “living death.”

We mentor & educate the newly diagnosed, mourn members of our community when they pass away, and support each other when the going gets really tough.

Outsiders looking in to our forums may be confused & lost by the medical acronyms we casually throw around, from NMH (Neurally Mediated Hypotension, also called POTS), to MPS (Myofascial Pain Syndrome), to CBC (Complete Blood Count), to GcMAF (an experimental treatment).

We “talk” like doctors, because often our only route to any improvement, or just slowing the painful, downward spiral of our illness, is to become as educated as we can, and to become advocates in our own healthcare & “medical management.”

My PCP calls this the “collaborative approach,” and I’m greatly blessed to have a doctor who is as open to new ideas as she is – many others have docs who “blow them off.”

Because we as patients are so well-versed in our illness, and living in such despair, we often choose to try (doctor willing) any medication that holds any hope of improvement.

As journalist Llewellyn King recently put it:

The horror of this affliction is almost indescribable. I’ve been writing and broadcasting about these patients for several years and never have I seen such extended suffering, lives hollowed out, every tomorrow to be feared, the slightest departure from strict routines of inactivity to be met with punishing suffering. – from CFS: One Disease and Its Costs

When you have no quality of life, you take risks, and you try experimental treatments, or anything that holds any promise.

And so it was that I spent 2 days recently wondering if I had leukemia, before realizing it was a medication side effect.

It was a “perfect storm” of events.

I usually have monthly labwork done at my PCP’s office, but because my LLMD had ordered a huge number of labs just prior to my monthly appointment with my PCP, she didn’t have any labs drawn at my visit.

I received the result of my labwork from the nurse practioner (NP) at my LLMD’s office.

In 20 years of battling this crud, I’ve never before seen a lab come back like this. I’ve had lots of highs & lows, but never one with the test result underlined and the word “ALERT” written by it, like this:

WBC 2.5 ALERT

My WBC (white blood cell count) was 2.5, where range is 4.0 – 10.5. My RBC (red blood cell count) and absolute neutrophils were marked as low, with a number of others in the CBC running borderline low.

The NP says “Hmmm…” several times, shows it to me, and then tells me its either a lab error or “a serious blood disorder.”

Given that I’d just been discussng the severe weight loss, persistant nausea, extreme exhaustion, etc., my mind jumped to the most common “serious blood disorder” – leukemia. It would have made sense.

She told me not to worry about it too much until it was repeated (yeah, right). I had it repeated the next day, a Friday, and then anxiously awaited the results.

While waiting, I unloaded about my anxiety to the members of the mecfsforums, and received many reassuring responses when I explained the circumstances.

I then realized there was a more likely cause than leukemia, because I had made one of those risky decisions I mentioned, and was taking a medication that could cause this type of very serious problem.

14 months ago I wrote about it in a post, Valcyte: the (Slightly) Scary Adventure Begins, about the anti-viral medication, Valcyte, and my decision to give it a trial, based on studies coming out of Stanford.

I knew going in that this drug offered great promise for ME/CFS patients, especially those like myself, with high titers to Herpes family viruses, like EBV.

I also knew that it was “a drug of last resort” and had multiple “black box” warnings – it can cause life threatening side effects.

The most common side effect is a drop in platelets, which help in clotting. But, it can also cause damage to the bone marrow, causing the body to be unable to make enough blood cells, of all types. There have been people who died, or required bone marrow transplants, as a result of the damage done by the Valcyte.

That’s why we have done those monthly labs, watching for those side effects – “sudden onset severe leukopenia” (very low white blood cells), “neutropenia” (very low levels of a type of white cell), etc.

The NP I saw knew I was on Valcyte, but evidently didn’t know its possible side effects, and my PCP didn’t get the results of the labs because she wasn’t the one who ordered them.

Which left me there, copies of alarming labs in hand, mulling the situation, anxiously awaiting the results of the new labs.

Thankfully, I remembered the Valcyte’s possible side effects, and researched it online. I put a call in to my PCP, but she was on vacation (it was by then a Saturday) until Monday.

I spoke with my awesome PCP on Monday, and she agreed the most likely culprit was the Valcyte, and to stop taking it. I already had.

My repeat CBC showed a bit of a rise in my WBC, from 2.5 to 3.7, so it’s still low, but it’s most likely we caught it in time.

The Valcyte helped me, mostly by reducing my PEM, and improved my cognitive function somewhat. It was the only thing to really help at all in the last 5 or more years.

The (more than slightly) scary Valcyte adventure has ended, for now. Once my blood counts come back up, I hope to re-start it, likely at a lower dose.

We make these risky decisions all the time, we patients. Some have said they’ve “donated their body to science” while they’re still using them.

I think that’s a good way to put it.

Earthing: A Simple Healing Experiment Begins

I’ve just come inside after spending an hour or so chained to the ground….

(Do I have your attention?)

Its not quite what I’m sure you’ve just imagined. I was “chained” with a silver chain, wrapped around my ankle, that was itself connected to a electrical ground wire that led to a grounding post in the Earth below the screened in porch. I was rocking in my favorite chair, sanding a moonstone & resting while enjoying the day.

The full reason why can be found here:
The Earthing Institute

The concept is simple:

The surface of the Earth resonates with natural, subtle energies. Ongoing scientific research is discovering the details as to why people feel significantly better when they connect with these omnipresent energy fields. Earthing refers to the process of connecting by walking barefoot outside, as humans have done throughout history… Earthing immediately equalizes your body to the same energy level, or potential, as the Earth. This results in synchronizing your internal biological clocks, hormonal cycles, and physiological rhythms, and suffusing your body with healing, negatively charged free electrons abundantly present on the surface of the Earth. (from Earthing Institute – About Earthing

The website is large, and there’s even a book about this shockingly simple concept – that we evolved within contact of the Earth’s natural charge, and that now that we’re “modernized” with insulated houses & rubber soled shoes, we are no longer in contact with the Earth’s charge, and this is one cause of chronic illness.

As I read through the site yesterday, over & over they mentioned inflammation, and the role that the Earth’s negative ions have in reducing inflammation by neutralizing the positively charged ions of inflammation.

This is not some New Age “grounding” technique – this is backed by hard science & serious research. They’ve documented the changes in the body caused by simply being in contact with the Earth’s ground energy.

We know that Earthing allows a transfer of electrons (the Earth’s natural, subtle energy) into the body. We know that inflammation is caused by free radicals and that free radicals are neutralized with electrons from any source. Electrons are the source of the neutralizing power of antioxidants.
In the Earthing studies, as well as the feedback from thousands of individuals who have grounded themselves, we have consistent evidence of people whose pain was reduced. Such reduction of pain is evidence (but not proof) that inflammation is reduced. However, the studies point clearly in that direction. (from Earthing Research

They also have a companion site where they sell kits for grounding yourself indoors – either using the “ground” that is hopefully incorprated into your home’s wiring or using a ground rod & a cord thru a window, and they have everything from silver-impregnated sheets, grounding mats, bands, etc., that you plug into the connectors the kits come with.

One of the questions asked in one of their FAQ’s was couldn’t you just use your own ground rod & wire & wrap it around your ankle. The answer was yes, but it wouldn’t be very comfortable.

As I sat outside, bare feet planted solidly on moist Earth, I realized I already had a ground rod & wire running just under the porch, that was previously used to electrify a wire running around our dog fence. It didn’t take long to unhook it from the dog fence, curl the wires into a loop, and then attach a silver chain.

Wa-la! My own home grounding system!

Does it work? Will it help those of us with ME/CFS/FMS, etc? I don’t know.

But, reading through their site yesterday, I read account after account of people saying it improved their sleep, eased arthritis pain, increased their energy, normalized their blood pressure, and yes, even one person who had fibromyalgia & was greatly helped.

They even go so far as to warn those of us on medication that we may need adjustments if we begin Earthing. Apparently, it has a documented affect on blood pressure as well as thyroid function, with many taking meds for those needing a reduction in their medication.

The minimum amount of time needed for an effect is recommended as 40 minutes, twice a day. Many people are sleeping on their grounded sheets, so getting an 8 hour grounding.

There is no way you can have too much time spent grounded, since being grounded 24/7 is our natural environment.

I’d love to get their grounding sheet, but for now, I’ll start with my homemade set up, and see what happens.

So did I notice anything during my first grounding session? Yes. And I don’t really have words for it. I felt peaceful. Quiet inside. Less anxious. Centered. The same way I felt as a child when I ran wild, always barefoot, through the Woods. And ya know, I didn’t want to un-hook myself!

I’m very interested in what you might think of this concept – give their site a read through, and leave me a comment, please!

Funny Blender Mishaps, Past and Present

A little change of pace from the seriousness of recent posts…

A Long Time Ago…
Let’s see, must have been about 31 years ago, I was in the midst of a teenage melt-down, and went from being the-child-terrified-of-doing-anything-wrong to a smoking, drinking, partying crazy person. My parents were newly divorced, and my mom & I had moved from my childhood home to a brand new townhouse.

My mother, unsuspecting of the depths of my wildness, made the mistake of leaving me home alone for a few days. While I didn’t have a “Risky Business” style affair, I did have a couple friends over, and we decided to make some frozen grape juice & vodka drinks we’d heard about. While I was only 16 or 17, alcohol was far too easily obtainable.

The recipie was simple: 1 can frozen concentrated grape juice, 1 can full of vodka, and blend & add ice & blend some more for a frozen delight, kind of like a slurpee with a kick.

Things started out smoothly, but the blender jammed on some ice cubes. Like an idiot, I put a spoon in & stirred the concoction, thinking I was only putting it down a little way.

Except I was distracted by the music & laughter.

And I hadn’t turned the blender off.

The inevitable insued. The spoon got caught in the blades, and quite literally exploded the blender. The container shattered, and frozen grape slush was instantly splattered everywhere.

Not only was it all over me, it was also on the cabinets, the walls, counter, floor. You name it, and it was dotted with deep purple.

Panic overcame me. Grape juice stains are some damn hard stains to get out!

We sprang into action, furiously mopping up the mess, trying to erase the evidence.

Floor & counter & cabinet were no problem.

The white wall over the counter was a big problem, as was an orange & white potholder hanging on the wall that a friend had given my mom that said “Over 40 & Feeling Foxy.”

With a little careful bleaching, the potholder came clean.

The wall was another story. The flat white paint had clear purple splotches even after much spraying & scrubbing.

Luckily for me, the builders had left the leftover paint in the basement. Yes, we painted the entire wall between the counter & the cabinets.

Somehow, it worked. I told my mother I’d been making slurpees and that’s how the blender got broken. I was into my 30′s before I told her the whole story.

Which brings us to today’s misadventure…
After only 4 hours of sleep, I had to get up to deal with the installation of our new heat pump. Exhausted. PEM. Talking to Rhiannon. Worrying about Kodi biting someone.

And making my medical shake.

I’ve made literally hundreds of frozen smoothies since my teenage mishap, with nary a problem. But today I lost focus.

The blender didn’t break, thankfully. But with a deafening pop, the thick stainless steel knife I was using to stir the concoction of juices, frozen raspberries, coconut milk, ice, and powders, snapped when it hit the blades.

As I looked in befuddlement at the knife handle left in my hand, my face dripping with frozen shake, the rest of the blade was still in the blender, until it shot out, further splattering cabinets, counters, floor & me with even more shake.

This time, there was a lot of laughter as Rhiannon helped me mop it all up. And we don’t need to re-paint the kitchen.

Lesson learned.

Again.

Shock and Dismay: Re-visting Tick-Borne Diseases

Last week, I saw my LLMD (Lyme Literate MD) again, and left after spending an hour with her, in shock & dismay. Where neither my PCP or neurologist have any ideas really where else to go with my deteriorating health, other than the “band-aid” approach – treating the symptoms as best we can – my LLMD has a very strong opinion of how to get to the root of the problem, the actual cause, and how to treat it.

But I don’t like it much. That’s not to say I think she’s wrong, but rather, that it scares me shitless to go down this path again.

I’ve been seeing her for 12 years, and I’ve been a very frustrating patient for her, by my continuing to stay very ill, slowly spiralling downward. She told me that she’s learned a lot from me & how I’ve reacted to some treatments we’ve tried, and she wished that she had known all that she knows now when she first started treating me.

We will call her Dr Z, and if you’ve seen the amazing Lyme disease documentary, Under Our Skin, then you’ve seen her, sort-of. She appears in outline, in shadow, as at the time of the filming she was being investigated by the state medical board for long term IV antibiotic use in Lyme patients. She was cleared of all charges, btw.

The Past
When I started seeing her all those years ago, she immediately suspected Lyme, along with a host of other things (EBV, HHV’s, Parvo B19, Mycoplasma, etc), and all her intuitive guesses eventually panned out. Getting a positive Lyme test took a loooong time, and after years of oral antibiotics, we finally got one, and I finally agreed to getting a PICC line & undergoing IV Rocephin for a solid year, from 6/06 to 6/07.

It didn’t go well, in some regards. She had told me to expect to be sicker than I’d ever been in my life, sicker than I could even imagine, and I was. I lost my business, then almost 10 years old, as I became completely bedbound except for shaky trips to the bathroom. It eased up in intensity towards the end, but I’ve stayed primarily housebound ever since.

And ultimately, we’re pretty sure we didn’t get all the Lyme. Knocked them down by a lot, but they’re tricky suckers to kill, adept at hiding out in lots of places.

Present
Fast forward to now, and I’m living with chronic daily headaches, migraines, which are increasing in intensity. I’m also constantly nauseated, lack an appetite, increasing pain from reactive arthritis, overwhelming exhaustion, swollen glands, sore throats, gut issues, etc etc etc.

It is the daily migraines with accompanying light & sound sensitivity & nausea that are really my biggest problem, as it is because of those that I: #1 regularily want to blow my brains out just so it will stop hurting, and #2 am simply not eating enough, which has led to a weight loss we can’t stop, and me being 111 pounds with increasing loss of muscle.

As my doctor visit unfolded, we discussed all these symptoms, and Dr Z says to me that I’m describing Bartonellosis, another of the tick-borne diseases. Her theory is that with all the oral antibiotics I took plus the IV rocephin, which is not specific for Bartonella but will knock down some of them, that I’ve had “Bart” all along. Wisdom she’s learned over the last decade is that you have to eliminate the Lyme co-infections & parasites as well as detox prior to tackling the Lyme.

So her plan is, before I lose even more weight & get any weaker than I already am, to get me a PICC line and on IV antibiotics for the Bart. Assuming insurance will approve it.

I asked her, flat out, if she thought I was really strong enough to go through this. She said yes, that she has two patients being treated for Bart right now who weighed 80# when they started, and within 6 -8 weeks their headaches had resolved, and they’ve each gained over 20#.

In the meantime, we’ve already done a trial dose of the Invanz, sent blood to MDL to check for Lyme, Babesia, Bartonella, and other tick-borne diseases, plus had 25 tubes of blood drawn at Labcorp for a host of other tests.

I’ve also started on “medical shakes” – highly nutritious & containing a broad spectrum of vitamins, minerals, amino acids, and herbs, especially geared to healing my leaky gut, detoxing, and stopping any further weight loss.

As I write this, my head is pounding away, and I’m hooked up to a Holter heart monitor, something my PCP set up, along with the echocardiogram I had Friday.

The Fallout
I’m scared. No, I’m repelled by the mere thought of getting another PICC line, and doing more IV antibiotics. That’s all there is to it. Dr Z says the flare to be expected won’t be as bad as that from the Rocephin, and it’s likely I won’t be on it as long, maybe around 4 months, depending on how I do. And she says she has tricks up her sleeve now, things she can do to minimize the flare.

But my previous experience with the IV antibiotics, which very nearly killed me, has me pre-conditioned to want nothing at all to do with more antibiotics.

On the other hand, there’s not really another choice. We’ve been flailing around trying to stop these migraines for years, and they just keep getting worse, and I just keep getting weaker.

Its pretty much a do or die. This is the only hope of any improvement anyone has for me. My neuro shakes her head & gives me a sad look and says she’s not going to lie to me and tell me she thinks there’s some magic pill out there that is going to make the migraines go away. My PCP is terrific, and had suggested the medical shakes at my last visit, but other than treating the symptoms, she has no ideas for what else we can do.

A Dose of Radical Honesty
By now, you likely already know that I’m all about telling it like it is, no holding back, nothing unsaid. Radical honesty, even if it hurts to hear it.

The truth is, I’ve been sick a very long time. Fighting Lyme & its co-infections, the ME/CFS (which my LLMD thinks is caused by the Lyme & its friends), the constant pain. And that really wears you down.

I love this world we live in, love watching nature, the seasons change, and I love my family, very much, and my spirit sisters. But were it not for Rhiannon, my 17-going-on-50 year old daughter, I don’t think I would even be here trying to wrap my head around this. In so many ways, it would be easier to just give up.

But she needs me, for as long as possible. And I owe it to her to do whatever it takes to make that happen.

And as she pointed out to me, when I expressed these thoughts to her, wouldn’t it be nice to be rid of these headaches? Wouldn’t it be nice to be able to go see a movie again? Or even just to watch tv again? Or to talk on the phone without my mother’s voice causing me to flinch with pain? To have the windows open and be able to listen joyfully to the neighbor’s children playing instead of wincing at every high-pitched squeal of delight? Wouldn’t it be nice to go for long drives on the Skyline Drive like we used to, without having to worry about the ever present migraine being made worse by sun flickering through trees?

Yes. Yes, it would indeed.

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If you have experienced a similar situation, I’d love to hear about it, whether good or bad! Please, leave a comment below, or you can message me privately on Facebook – link up top on the right. Thank you for reading, caring, and sharing your thoughts!