Sunday, April 3, 2016

Bedridden

Friends, I am getting worse.

As some of you know, I was seeing some small progress though January, and was very encouraged.

But then February hit and, like a bolt from the blue, brought with it new symptoms - namely, the neuropathy pain I felt in my hands and feet in the mornings spread to encompass my entire body - trunk, legs, arms, even head.

And worse, the one med I had found that was helping...just...stopped.

I told myself it was just a weird phase. To hold on and hold out, because relief was on the way.

I tried many new meds - many of which, if they worked, only did so for a few days.

In a matter of a few short weeks, I went from being on one med for sleep/pain and one med for my nausea, to taking eight meds regularly, with no relief.

Then, this past week, even more symptoms started piling on. If it wasn't enough to have dry eyes, I now had to have Sahara Desert eyes AND mouth. It's like my body stopped producing any of its juices.

It became hard to eat.

It became impossible to sleep.

And then came the joint and muscle pain, and the back pain... And night and nights of meds with no sleep...

Frantic, I turned to my doctors, including the ones at Mayo, for any indication as to why I would be spiraling downward. They were as perplexed as I was.

But when the joint and muscle pain came on - when the back pain spiked and the water works turned off - I remembered something: The Flox Report.

Written by a citizen journalist for people who suffered antibiotic poisoning, specifically antibiotics in the fluoroquinolone class, The Flox Report details the typical symptoms and progressions of antibiotic poisoning.

I first read it in September, and it scared me to death because I knew I was experiencing adverse reactions to the 7 - YES, 7!!! - antibiotics I was given in August. In addition to these antibiotics, I was given multiple steroids, which are counterindicated with fluoroquinolone antibiotics. Add to that a couple of high radiation tests, and you have my recipe for disaster.

In any event, I returned to The Flox Report and was heartbroken as to what I found: my new symptoms are not random at all. Rather, they are accurately predicted (down to the month of onset) in The Flox Report.

And here's the worst news - my symptoms are indicative of a very severe "floxing" - ie. a very high antibiotic toxicity.

According to the report, this could take me 5 - 8 years to recover, if I recover AT ALL.

I know everyone is different. I know no one has a crystal ball. I know some people have, indeed, gotten better. I also know that some never will.

But friends, please sit with me for a moment and ponder - how would you feel about this news if you had at least 30 (yes, I counted them) symptoms that came and went everyday? 30 things that, any one of which, would have bothered you when you were healthy but, now that you are not, are compounding to make your body feel like a torture chamber? How could you bear the weight of knowing that, not only is it likely to get worse (The Flox Report says new symptoms can come on as late as 4 years after the antibiotic ingestion), but it is likely to get MUCH worse? That many people are bed bound and completely disabled by the end of it?

Aside from one or two obligations, I have not left the house in three days.

I stay in the bed.

While it's not comfortable there, it is the least uncomfortable place to be.

I am more tired than I have ever been in my life, and I cannot sleep.

I have the symptoms of Reynaud's, Sjorgen's, Chronic Fatigues Syndrome and Fibromyalgia, but I do not have any blood test indications that I have any of these.

The thought of eating or brushing my teeth makes me tired.

Most of my meals lately have been liquids.

...

Why am I writing this?

Why am I telling you things that will likely bring you down?

Why am I "putting this all out there"?

I don't know, except to say this is what I have always done.

I have always put my thoughts and feelings out there for others to read.

So I guess it only makes sense that I should do it now...

...

Scott and I are scheduled to go to Mayo Jacksonville next week so I can take a course on chronic pain management.

I hope it is helpful, but I have my doubts as to how much I can give to the program. I haven't even been able to get down a glass of water and a banana today, and it's already noon.

Friends, I am hurting so much - both literally and figuratively.

Meds don't seem to be helping and, in truth, it was the meds that did this to me in the first place.

Not the dysautonomia. My body did that to itself. But the antibiotics. I took them - all of them - even after reading the warnings about ligament tears and neuropathy. That's so unlike me. I used to refuse any meds at all because I was so scared of the consequences.

But then the dysautonomia came on and I was desperate. I took whatever they gave me. And now I am sick beyond my wildest dreams.

I did not know it was possible to be this sick.

I did not know it was possible to feel this bad all of the time.

I did not know there would be a time when I could not walk without pain or could not sleep despite being to-the-bone tired.

I could use prayers I guess... but I could also use some help.

I have discovered positive sites, like FloxieHope.com, which provide some comfort, but unfortunately for me, most of those stories are of folks who had a very severe acute reaction that calmed over time.

My symptoms are increasing - and the ones that are the most dangerous according to The Flox Report - are the ones I am developing.

I will include The Flox Report here. If you want to know what I am babbling on about, the predictive factors are on pages 40 - 60. Note that the development of dry eye and dry mouth are very bad predictive indicators. As is progression of symptoms past month 6. (I am at month 7).

If you're wondering how a drug that I took so long ago can still impact me, The Flox report answers the question, but I'll just go ahead and address it here: basically fluoroquinolones contain fluoride, which, in large doses is toxic to the body. It destroys mitochondria, meaning that, when your cells replicate themselves to form new cells, the cells of a "floxed" person are replicating damaged cells. Or not replicating at all. which has profound consequences down the line. Links have even been shown to diseases like Alzheimer's and Parkinsons.

So yes, I am terrified.

And tired.

And I hurt all over.

And I go back in time everyday and reread that damned warning that I talked to my husband about.

I relive my decision to take the medicine anyway - not once but TWICE in the same month.

I sob repeatedly, because I know that, with that decision, I gave this pain to myself.

If I could go back in time and change just one thing, it would be this - I would never have taken those poisoned pills. If I hadn't, I wouldn't be in this spiral that's robbed me of my life and my plans and my goals.

Anyway, here is The Flox Report: https://docs.google.com/file/d/0B3GuTGU3bpIvWVlMWllPeFB2U2s/edit

I have to go force feed myself this banana.

1 comment:

  1. i took azithromycin just once or twice and my gut took a full month to recover, its an azilyde and not a quinolone, but for sure not as benign as tetracycline !

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