Is Lyme The 5th Dimension? Or, The Facets of Fatigue

I woke up just a little bit ago from what has become the usual afternoon nap, feeling heavy, toxic, groggy and doped up. I have that lingering feeling of fatigue that sleep does not seem to reach.

When did I become a napper? Even in the worst of my Lyme I have never been a person who can sleep well in the middle of the day; that constant buzzing brain activity keeping me awake no matter how tired I am….that brain that even keeps me awake during the night when my sleep-deprived body is trying to shut down. I am trying to remember when that changed, sometime within the last several weeks or months I think. I know that the last few weeks at work I spend the day caffeinating myself within an inch of my life and counting the hours until I can go home and crawl into bed.

I guess the good part is that I have also for the first time in my life (without ambien) been sleeping better at night as well. I think it is thanks to an extra dose of this little guy on top of my Zen, prescribed by my ND  

 
Who is a genius by the way. I have had trouble sleeping since my body entered this mortal toil.

In any case the Lyme journey is interesting in that you realize that there are not enough words in the English language for fatigue; I have had deep discussions with fellow Lymies on this subject and we seem to be in agreement. Fatigue is now a catagory with at least half a dozen subcategories, or levels if you will that you can start to identify by their nuances, kind of like the 10 point scale an RN gives you for pain.
*(Please note; all levels given here still fall under the catagory of “but you don’t look sick” and “you must be feeling better because you look well” by the outside world, who do not understand Invisible Illness/Pushing Through/Trying To Function Despite and My Good Day Would Be Your Sick Day.)

1. ūüėź Meh. Getting by, managing, functioning, but underlying malaise and general apathy which can easily be disguised and overcome with a smile. 
2.ūüėē Bleh. Very much like level one but more underlying sleepiness, heavy limbs, still functioning but it is like wading through mud.

3. ūüėíWhahh. Insert all of the above only into limited hours of the day. May possibly spend most of the day resting, sleeping, being “lazy” to then emerge magically into Bleh or Meh for work or other activities.

4.ūüėĎ —–. Malaise, fatigue, walking zombie. Going through the motions, functioning (sort of ) in that you can get your body in motion and move through survival mode, but you promise no one that you will remember any of this….

5. ūüėĶ whonk. No I don’t know what that word means, but it sounds like something hitting the floor. This is a day when you sit on your bed until one in the afternoon willing yourself to stand up, trying to work up enough moxie to just get yourself into the shower. I’m not sure if it’s because of POTS or not but I hit “whonk” fairly often right after a bath when I have drained the tub and have to stand up again. I look forlornly up at my towel and robe and standing back up just seems like too much effort. For Lymies whonk days are the days in between Meh, Bleh, Whahh and —-. These are the days you don’t see us, the days we bail on social plans last minute because our shoes are across the room and mock us with the distance. Remember even though we usually “look fine” and can pretty much overcome some Meh and Bleh days you don’t get to see us when we’re whonked, and we think the greatest invention in the history of the universe is the tv remote because it involves minimal movement and provides maximum entertainment.
So I hope you enjoyed my little off-the-cuff fatigue chart. Please note that any day can contain any of the above or combinations and anything in-between. Also please note that friends and family observing the functioning Lymie may not realize that even through we look fine, strange behavior, inappropriate responses, seemingly anti-social behavior, or just plain quietness or unresponsiveness can more than likely be attributed to the above. I know sometimes I will think back and realize I didn’t answer that person, or realize I spoke inappropriately or just came off dumb or unfriendly. It happens. We still love you, we still care, life is  just getting filtered through Meh-Whonk. 
My nap buddy ‚ėļÔłŹ 

 

A Bad Week To Live In My Body

Image

Last week was a decent week, I had a little more energy and mental clarity and my inflammation was down a bit. Contrast to this week where coming out of a weekend experiencing some of the worst fatigue I have had in 6 months, and almost literally doing nothing but sleep…..was pretty terrible. Beginning Monday with starting a bad…um “girl” time, and leading into Tuesday when my digestive system just pretty much stopped up and shut down, followed by my kidneys (bladder?) deciding to just stop functioning for a day (all the while drinking my normal amount of fluid), my body got completely toxic, water retention was and still is intense, and the body pain that has been a little lower the past few weeks is now burning fire through my joints and muscles. I am not sure why I did such a complete 180 in a matter of days. Such is Lyme, temperamental little scum…

   I am only hoping, praying that I can crawl back out of this to physical and mental sanity.

Oh, and my liver is angry too

A Disection Of A Herx Reaction, And Why Lyme Treatment Makes You Feel Worse

When I began Lyme treatment I was told that I could feel worse for a while, but I was in no way prepared for what was going to happen to my body. Yesterday I shared a very comprehensive article on what to expect mentally and physically when going through Lyme treatment. Today I am sharing an article on Endotoxins and the Herx reaction when being treated for Lyme. I love the science on why I (we) go through a mini hell. I am pasting the complete article below, and also including the link to the original website beneath to give them full credit:

Endo meaning “Internal” or “inside” – Toxin meaning “poison”

The reason the herxheimer reaction exists

You know what a herxheimer reaction is, and how to deal with one through different detox methods, but do you know the actual culprit directly responsible for the symptoms that manifest as a herx? ¬†Introducing the endotoxin. ¬†The toxin we all know the spirochete releases in our bodies once they’ve been killed, or in more scientific terms, lysed (i.e., the destruction of the bacterial cell wall). ¬†To understand what an endotoxin is and how it operates with the spirochete it belongs to, let’s take a vague look at the structural¬†anatomy¬†of a spirochete.

The bacteria¬†responsible¬†for Lyme Disease is a spirochete. ¬†It’s granted this name due to its spiral shape and the “cork screw” type of fashion it moves in. ¬†What powers this movement is the endoflagella; endo meaning “internal” or “inside” and Flagella meaning “whip”.

The endoflagella allows the spirochete to move quite fast on a microscopic level.  In fact, it moves at roughly 0.00011mph or 60 cell length per second.  To put that into perspective, a cheetah moves at around 68mph, or 25 body lengths a second.  If a spirochete was the size of a cheetah, the spirochete would be able to move more than twice as fast as the cheetah.

As we reduce our perspective of the spirochete even more, we can see the different layers it’s composed of and the location of its components. ¬†The endoflagella which powers the spirochete’s movement is located between the outer member and the peptidoglycan layer.

What also comes into view is the lipopolysaccharides, located in the outer member of the spirochete. ¬†This is where our culprit, the endotoxin is found. ¬†Lipopolysaccharides not only help preserve the integrity of the spirochete’s cell wall, which is crucial to prevent death, but even protect the outer membrane from chemical attacks.

Conventional and herbal antibiotics kill the spirochete by inhibiting its ability to synthesize their cell walls and other metabolic processes to sustain itself.  As the spirochete loses its ability to synthesize its cell wall, autolysis (i.e., rupturing or exploding of the cell wall) occurs.  

Fragments of the cell wall that contain the once concealed Lipid A (endotoxin), are then released into circulation of the blood stream.  Their exposed presence causes a massive inflammatory response, also known as a herxheimer reaction.

The lipopolysaccharide consists of 3 main parts:

  • Antigen-O – Is the outer most exposed component of the lipopolysaccharide. ¬†As a result, it is a target for the antibodies of the immune system.
  • The Core – Attaches directly to Lipid A and Antigen-O.
  • Lipid A (Endotoxin) – Is the only non-exposed part of the lipopolysaccharide as it anchors it into the outer member of the spirochete. ¬†Lipid A is the endotoxin.
  • What happens when the endotoxins are in the bloodstream?

    As the endotoxin passes through the blood stream, it binds with¬†lipopolysaccharide-binding proteins that guide it to CD14 cells, an immune system receptor cell. ¬†CD14 receptor cells are designed specifically for the detection of endotoxins, and can only bind with them if the¬†lipopolysaccharide-binding protein¬†has already. ¬†Once CD14 has engaged with the endotoxin in the blood, it then transfers it to another protein known as MD2. ¬†MD2 then associates with another immune receptor known as TLR4. ¬†TLR4’s engagement with the endotoxin then causes the production of cytokines and nitric acid (i.e., inflammation) by signaling macrophage and¬†endothelial cells to release them.

  • What happens next?

    Depending on how massive of a die off a person has (i.e., the quantity of endotoxins flowing through the blood stream) will determine different outcomes. ¬†A reasonable die off reaction will eventually be brought under control by the immune system time and time again. ¬†However, a severe die off reaction can truly cripple the body, and even cause endotoxic shock (i.e., death). ¬†The larger the amount of endotoxins in the blood, the larger and more pronounced the inflammatory response. ¬†As part of the inflammatory¬†response, it’s the job of cytokines and nitric acid to expand the blood vessels in order to allow more blood to reach areas of infection or injury. ¬†If the amount of endotoxins in the blood is too great, the inflammatory¬†response¬†will be as well, and as a result,¬†vasodilation¬†(i.e., widening of blood vessels) will become too pronounced and result in hypotension (i.e., extremely low blood pressure). ¬†Low blood pressure will not allow oxygen rich blood to appropriately circulate through tissue and organs, resulting in hypoxia (i.e., insufficient oxygen supply in the blood) and organ failure.

     

    This is why it’s extremely important to be conscious of how you feel after administering a treatment protocol, or increasing your dosage for Lyme Disease. ¬†Feeling worse is normal, but do so with reason. ¬†If you notice the dosage level you’ve consumed has manifested a herxheimer reaction that is completely unbearable and intolerable, either drop your dosage back to a more tolerable level, or refrain from continuing your treatment protocol for at least 3 days (consult with your doctor). ¬†This will allow your body to catch up in removing endotoxins from the body, and you can help it through detoxification¬†methods¬†and by reducing inflammation. ¬†When you feel your herxheimer reaction has subsided, slowly begin your treatment protocol again, and slowly build back up to the dosage you last knew you could tolerate.

  • http://www.tiredoflyme.com/endotoxins-and-lyme-disease.html#.UZpeIJzeaSo