One thing I've really been struggling with lately is POTS. That stands for postural orthostatic tachycardia syndrome. If you're wondering what in the crap that is, here is some info.

Postural orthostatic tachycardia synrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position.

POTS is also sometimes called Dysautonomia and here is the explanation for that. 

Dysautonomia is a general term used to describe a breakdown, or failure of the autonomic nervous system. The autonomic nervous system controls much of your involuntary functions. Symtpoms are wide rangind and can inclue problems with the regulation of heart rate, blood pressure, body temperature, and perspiration.

POTS is definitely not fun and can really affect mobility. It's also extremely unpredictable because sometimes it gets pretty severe and I am unable to stand in one position for more 10 or 15 minutes without getting a racing heart, extreme weakness in limbs, flushed face, and seeing black spots. Just this week I've nearly fainted twice. Yet sometimes I feel okayish and can walk around for awhile. I think that as the Lyme and coinfections improve, the POTS will also improve. Luckily my fainting isn't an everyday thing. I have passed out a couple of times but I usually can tell when it is about to happen and quickly find a seat. Here are some of the symptoms of POTS.

"Approxiamtely 50% of POTS patients have a small fiber neuropathy that impacts their sudomotor nerves. Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath. Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position."

Note the purple leg thing; that one has to be one of my favorites. haha. Here's an example of the blood pooling. Today I did laundry which is one of my least favorite chores these days because our washing machine is broken and it has to be sat on or it shakes the entire house. My legs hang off of the edge and there isn't any way for me to keep my feet elevated so hello blood pooling!


So here are my normal happy feet free from any blood pooling. (Please forgive me for my chipping nail polish. It needs to be redone badly.)

Now here are my feet after they been dangling for only about 5 or 10 minutes.

Isn't it beautiful? It's not very comfortable either with all of the swelling and stiffness. The last couple weeks have been a little rough in regards to Lyme and POTS both. At my doctors request I have started some new medications and supplements and have been eating entirely raw. I think it's causing me to Herx quite a bit and is also just hard on a weak body. In case you've never heard of Herxing or the Jarisch-Herxheimer reaction, here is a little info!

The Jarisch-Herxheimer reaction is a reaction to endotoxin-like products released by the death of harmful microorganisms within the body during antibiotic treatment. 

History of the Herxheimer reaction
The reatment of many bacterial infections provokes a Herxheimer reaction. Herxing was originally observed in patients with acute infections such as syphilis who received mercury treatment (a weak antibiotic). The immune system response to acute infection is sometimes referred to as the immune cascade. For example, in the infamous anthrax attacks people died because by the time they got to the hospital the anthrax organisms had multiplied to the point where killing them also killed the patient.

It has been reported that patients with chronic conditions or infections such as rheumatoid arthritis, Lyme, tuberculosis, and louse-borns relapsing fever have also experienced herxing when treated with the appropriate antibiotcs.

POTS actually isn't all that rare, it's just rarely diagnosed due to lack of awareness. It's 5 times more common in women and is found a lot in women between the ages of 15-50. It's another one of those syndromes that baffle doctors because they don't know the cause, (or they just don't feel a need to research it) and is associated with many different diseases. I lot of other Lymie's I've talked to also have some form of Dysautonomia. 

Anyway, I'll keep doing my best and fighting through it! Nothing can stop me with the help of my good ol' cane and sometimes wheelchair.

So here’s what I deal with on a daily basis. Some (if not all) of these are caused by Lyme disease

Intersitial Cystitis: this is a painful bladder condition where the lining of the bladder erodes away. If I avoid acidic and spice foods I do pretty well.

Hyperthyroidism: For years my levels went up and down and now they’re permanently low. I get hair loss and severe tingling in my limbs without medication.

Hyperprolictinemia: My pituitary produces high levels of prolactin. Prolactin is a suppressing hormone so when your levels go high it you don’t produce the hormones you need. When this problem was discovered I was not even producing estrogen, progesterone, androgens, testosterone, DHEA, etc. I take a medication to lower prolactin and I am on hormone therapy.

I recently found out (through a 4hr fasting blood glucose test) I am insulin resistant and was experiencing episodes of hypoglycemia and hyperglycemia. I’ve nearly gone unconscious many times and now know why!! Apparently constant inflammation of the body can cause a person’s cells to become resistant to insulin. I also just learned that if you are genetically predisposed for something, Lyme disease can activate illnesses that were previously dormant. Thanks a lot Borrelia. I appreciate it. –seething sarcasm-

I have a double mutation of the MTHFR gene.

I have SO many symptoms of Lyme disease. Bear with me.

Extreme fatigue (not sleepiness. And no matter how much I sleep it is ALWAYS THERE)

Joint pain/body pain/muscle pain (especially on my left side)

Muscle weakness/convulsions

Burning/stabbing sensation

Tingling, twitching, and pinprick sensations

No stamina

Lightheadedness/fainting

Minor swelling in joints

Insomnia

Double vision/blurry vision

Swelling around eyes

Weight gain

Anxiety

Disorientation

Nausea

Diarrhea

Very poor memory

Poor concentration

Word recall problems

Sometimes trouble forming sentences

Migraines

Rapid heartbeat

Heart palpitations

Stomach cramps/pain

Pain in gallbladder area

Pain in chest

Mouth sores

Facial flushing

Sore throat/swollen and painful glands

Also! I have a plethora of food allergies also caused by Lyme disease. I am allergic to wheat, gluten, spelt, amaranth, eggs, (even duck eggs) all dairy, broccoli, bananas, and pineapple. I can still eat nuts without a problem so I am pretty happy about that!

Yay! I did it. I probably forgot things but that's my Lyme brain for you. 

Another day, another lesson. (I guess)

Today I helped carry a heavy package over to FedEx. For a healthy person that wouldn't be even remotely difficult but that is not the case for this Lymie. After taking the package my whole body trembled from the effort of straining my muscles and my left arm felt (and still feels) like fire or crushed glass is running through my veins. The muscles feel like their being crushed. They are weak and painful and feel as though a body builder decided to their entire weight on that arm. I know I won't have much use of it for the rest of the day. I also had a POTS (postural orthostatic tachycardia syndrome) flare up. My heart raced, my body got even weaker, and my face flushed.

I feel so disappointed in myself and like such a failure for not being able to do a simple task. I cried a bit afterword. I keep thinking of the jobs I can't get and the fun things I cannot do. I am trying to be patient and endure this valiantly but I am honestly getting really fed up with it all. I just want my old life back. I have learned a lot of great lessons since getting ill and feel like I have gained a bit of wisdom, but how much more do I have to take? I guess I'll find out. I do think I can come out victorious but I stubbornly want that day to come quickly. This stupid disease needs to know that I definitely will not easily give up. Go suck a lemon Lyme disease.

No more

I did my first intense Lyme detox bath and almost went unconscious in the bathtub. I didn't even get a full 20 mins; I got about 13 minutes. Thank goodness for William though. My heart rate was really high, I was incredibly exhausted, dizzy, and only saw black and white spots. I am out now but still recovering. My limbs feel like they are burning, they're tingling, and I have a creepy crawly sensation on my skin. I really hope they get easier from here because I don't know if I can bear another. Here's to a valiant effort. (?)