Saturday, August 27, 2016

Eyes & Floxing

When I'm away from writing for a while  it's either because I'm doing really well or really horrible.  Last time I was doing great, but since my start on Ciprofloxacin all things went downhill.  I began to feel really tired and everyday I was exhausted by noon.  I would push through a workout only to go home and nap. Over the last month, bed is where you would find me if you came looking.  I had gotten really exhausted on another antibiotic in the same family, Levaquin.  The difference is that this time I had a full out toxic reaction to Cipro, that led me to the emergency room.  Both Levaquin and Cipro are in the fluoroquinolone family, the most dangerous of all antibiotics and one you don't want to have a toxic reaction to.  If so, something called "being floxed" can happen and that causes permanent damage to your body.  This article describes things in more detail.

After taking this drug for 6 weeks my body could no longer metabolize it.  It caused a considerable amount of pain in my back, neck, knees, and legs that hit hard last week.  It took 6 days before I woke without severe aching in my knees, shins, back, neck, and head.  It has been almost 2 weeks since the reaction and I believe the medicine is out of my system and did no permanent damage. But only time will tell. I had to get off all medication until I saw my doctor.  Once off the medication my personality came back and my energy level is up.  It feels good to be me again, with little to no naps!

I saw my doctor 2 days ago but prior to seeing her I did something that I've been meaning to do but...
A.  It's not covered by insurance, which means even more money out of pocket and...
B.  I was too deathly scared to know what's going on in my eyes.

I went to an eye doctor literate in Lyme.  My eyes have been my worst symptom thus far and the time came for me to push my fear aside and find out what the hell is going on in there!  I was desperate for help. My appointment was scheduled the day after my toxic reaction, and there was no way I could physically drive 1.5 hours to my appointment in Seattle.  I called to cancel in tears because I hate having to cancel on people but I also hate having to cancel due to the state of my health.  I even woke and went to work at 4:30am in excruciating pain after 2 hours of sleep and a toxic reaction to my medication!

The eye doctor was very understanding and got me in the next day, luckily a friend drove me to and from (Thanks Staci ;).  Dr. B was a seriously compassionate doctor who has had many Lyme patients sit in his chair.  He told me it's always the same story with us;  Brushed off by doctors for years and stuck with irreversible damage due to the lack of knowledge surrounding Lyme disease in the medical community.  He took a look at my eyes and told me my Meibomian glands were not functioning.  He could see some serious build up of oil in the lower and upper lids.  Mgd is caused by several things, we believe mine is from the inflammation in my eyes, caused by the Lyme.  He says once I get the oil moving it should give my eyeballs some relief from the pain, swelling, and irritation.  Who would have thought!   It was so great walking out of a doctors office with an answer, you don't normally get answers from doctors when you have Lyme disease.

Here is a video that explains things really well.  Also, anybody who has "dry eyes"  this is most likely the reason why.  You really want to fix this problem because if left untreated the glands can stop working all together and then it becomes a full fledged gland disease.  Not good people.

I am getting the oil moving by heating and pressing daily on the glands in the eyelids.  He also prescribed me Restasis, which my Lyme doc does not want me to take because it lowers your immune system function. Dr. B also recommended I get back on Doxy, because that particular antibiotic helps to unclog pores.  If none of the above options work there is a procedure called Lipiflow.  

My Lyme doc did put me back on Doxy and she really recommends I do the Lipiflow procedure, it would give us a really good idea of what is actually going on in my eyes and offer immediate relief from the pain, discomfort, and swelling that I have.  It is a natural procedure that applies heat to the glands and light massaging.  The problem with Lipiflow is that it is not covered by insurance and costs about $1500.

Every part of me wants this to be the main problem in my eyes.  If this is the problem with my eyes I have just leaped over the treatment wall I've been stuck behind and I'm running towards home plate.  This last year both myself and my doctor have been stumped as to why my eyes weren't getting better, and I fear we may have been treating a co-infection I might not have.   One thing to remember, treating Lyme and co-infections is truly a guessing game.  Each patient is different and Lyme disease causes so many other conditions which all must be treated first if remission from Lyme disease is going to be possible.

I will tell you, it's only been about a week of applying heat and pressure to the lids, but I can feel a difference in my eyes already. Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I press much harder when I'm not taking a photo ;)

Despite yet another setback I am still having a great summer and have been able to get out and do some fun things.  I actually feel good about treatment, even though this is the 4th Bartonella drug that my body does not metabolize, (and there's only 6 or so) and yet another setback of sorts.  After having gone to the eye doc I feel like it shed a lot of light on my current health status. I now have concrete proof that there is something else going on in my eyes.  This gives me hope that my only remaining symptoms right now are joint pain and sometimes muscle and neck pain.  How great would that be!?  Seriously,  how GREAT would that be?! Could this really fix all the pain and swelling around the eye??!!!  I have to remain Lyme logical though and not get too excited, yet.

Oyster Dome Hike

The plan right now is to work on the Lyme Arthritis and start repairing the damaged tissue in my body.  Both my doctor and myself feel like there might actually be an endpoint to my treatment in the future.  Let's hope so!

My weird update video

My Docs puppy lovins mcsnuggles

Doing what I can when I can.  A few days after the reaction.  Ballet workout and Bungees.

Thank you so much for reading and thank you for the kind messages I receive from readers.