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Refloxed and Return of the Purple Legs (part 2), Sleep

It’s been over a year since my last post on this. So much has happened and I haven’t known where to start.

I’m going to give a quick update and then just focus on sleep in this post. More topics to come on how I healed the various symptoms from taking levaquin (the drug brought to you by Satan himself).

There was an FDA hearing a couple weeks ago to change the warning label on fluoroquinolones, the class of drugs I took that made so I couldn’t walk without severe pain, so at least there’s progress on the political front.

As for me, I CAN walk again. I can even dance sometimes, so there is hope.  My original goal with this blog was to write about my own experience in hopes that it would spare others some of the pain I’ve gone through, so yes, I’m going to list what I’ve been doing to heal. I truly want others to not have to go through unnecessary agony.

Currently, my wrist and Achilles tendon are still stiff with pain and I seem to get every cold and infection under the sun, but I’m hanging in there the best I can.

I retraced my experience with healing from my first floxing back 16 years ago. I did make progress, but made a lot of mistakes along the way.

What I learned the first time around is if my mind isn’t working, I can’t make any healthy decisions for myself. This time I’m using my previous experience to heal much more quickly than the first time around.

I chose to focus on my insomnia and emotional state first.

I just couldn’t sleep no matter how hard I tried. If I did by chance drift off, I had such gruesome nightmares that they’d wake me up in a state of panic. This really messed with my emotions too.

The first time I was unable to sleep for about 2 1/2 years. I tried just about every natural sleep remedy around (meditation, hypnosis, supplements, bodywork, guided imagery, prayer, psychic healing, relaxation techniques, etc…). My gut told me pharmaceuticals weren’t the way to go.

A lot of these treatments claim that if you don’t believe in them, they won’t work. I wanted to heal so badly, I put all my faith into whatever I was trying and gave each of them a good run.

I went from hope to complete despair as I saw my body wasting away in front of me. I got weaker by the day and I still couldn’t sleep after over 2 years of this. I was bed-ridden and could barely lift my head off the pillow because my strength had left me.

I was a serious wreck after all this and felt very disillusioned and let down by a lot of practitioners. At this point I was seriously suicidal.

Eventually, I gave in and was put on psyhotropics and ambien to stabilize. I was on these for about 8 years. While they had the advantage of making me seem somewhat functional, they masked my feelings and pain by causing a disconnect between myself, my emotions, my body, and the world.

I seemed to be more functional simply because I was more compliant with what was around me. However, I made some decisions I wouldn’t have made if I was truly connected to my soul at the time.

I was eventually able to ween off of them, which I’ll save for another post.

This time around with being floxed, I knew I didn’t want drugs again. After MUCH experimentation and suggestions from a health practitioner, I found a supplement protocol that works for me for sleep.

I want to put the disclaimer out there that I have NO IDEA if what I’m doing is safe. Safe is such a relative term anyway. If you want to do what I do, please start slowly and do so at your own risk.

Here’s my sleep protocol:

An hour or two before sleep:

Glycine (3000mg)

l-theanine (200mg)

Kavinace PM (2 pills)

Shui De An (2 pills)

Lavela (1 pill)

Just before bed:

Kavinace PM (2 pills)

Shui De An (2 pills)

At first, I would still wake up about 2 hours after I fell asleep. I would then repeat with:

Wake-up dose:

Kavinace PM (2 pills)

Shui De An (2 pills)

I’d do the “wake up” dose whenever I woke up. This went on a few months, but at least I was getting sleep again. I was able to stop doing the wake-up dose eventually.

I’m now weening down, taking only 1 pill of Kavinace PM before I go to sleep. Kavinace PM is so expensive, but I can’t sleep if I leave it out of my protocol. I discontinued Lavela after about 5 months when anxiety started calming down.

Somehow all these are working together so I can finally get some Zzzzzzzzz.

If you can’t sleep, it makes it virutally impossible to heal.

Further reading:

FDA Committee recommends label changes, warnings for popular antibiotics like Cipro, Levaquin

 

 


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Cranberry Punch Gelatin or Healthier Jello-ied Cranberry Sauce

Just in time for Thanksgiving. Here’s a healthier gelatin that reminds me of jellied cranberry sauce. It’s a super-strong, tangy recipe with more of a “jello” consistency than the canned, jellied sauce, i.e., it’s not spreadable.

(This is my second time making it and as you can see, it’s been enjoyed)

IMG_4055

Cranberry Punch Gelatin

  • 3 cups unsweetened cranberry Juice
  • 1 cup lemon juice** (about 4 or 5 fresh-squeezed lemons)
  • 1/4 cup of gelatin crystals (I used Now brand beef gelatin)
  • 7-8 packs of sweet leaf stevia (or any sweetener to taste)

Combine 1 cup of the cranberry juice and gelatin

Heat til gelatin is dissolved* – You can use a pan on the stove at low heat or the microwave (I do 20 second bursts and then stir after each interval). When I use the microwave, I use a glass container that will be my final serving dish to cut down on washing dishes.

Add the rest of the ingredients. Cool and enjoy. Can be served after about 2 hours.

*I try not to let the juice boil because I don’t like the flavor of boiled fruit.

*The gelatin smells awful to me when it cooks, but will not smell (or taste) like this after it cools.

**I found that lemon juice masks the bitter taste stevia might have and that the powdered stevia is less bitter than the liquid.

Further reading:

Hibiscus Lemon Gelatin Treat


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Refloxed and Return of the Purple Legs (part 1)

I had no idea what the term “floxed” was until 2 months. Basically, it turns out I got poisoned by levafloxin (generic levaquin).

On my 8th pill, it was like a bomb went off in my legs. My legs turned a purple and it felt like burning, broken, shards of glass stabbed through every part of me from the knees down and other places like my wrists.

What I didn’t know at the time was that this would answer a medical mystery that has been plaguing me for years.

I read every account I could find about quinolone-induced, debilitating health problems (both personal and medical). I mean EVERYTHING (I looked up words like fluoroquinolones, cipro, avelox, and levaquin along with words like healing, problems, poison, pain, etc..). I have enough health problems and I was determined to find a solution.

There was so much advice. Much of which was contradictory. Some examples:

-whey protein is good, dairy is bad so avoid whey protein

-avoid glutamic acid because it will cause more anxiety, L-glutamine will heal your gut

-acupuncture helps, acupuncture does nothing

I needed a roadmap to deal with this and I needed one fast. Just about every account I read said the symptoms will get worse.

They did too! Severe insomnia, anxiety, and nightmares came like evil devils to torture me at night. My Achilles tendon swelled up to 3 times its normal size and turned bright red (so many problems, I don’t have the strength to list).

After the shock of not being able to wear socks because my feet hurt so bad the first few weeks, I started to put the pieces together.

What stood out to me were the purple legs. This had HAPPENED to me BEFORE!!!

I dug out my old medical records and it turns out I was given huge amounts of the drugs levaquin and prednisone before. These two drugs should NEVER be given together. I’m positive these are HUGE contributing factors to why I haven’t been able to heal all these years.

I’ve been disabled for years (before Lyme and all the other crap). In fact, levaquin may have contributed to me having MCS, allergies and fatigue because I didn’t have it before taking it (I’ve read several stories about healthy people who got these problems after taking quinolones) .

I was bed-ridden after the first time this “floxing” happened and the symptoms just kept getting worse.

After wallowing in “I don’t know what to do,”  I realized that I’m not totally clueless. There are things that I know WILL NOT work.

For me, these DID NOT work the first time around:

-Changing my diet (I did organic, gluten-free, dairy-free, low-fat protein, filtered water, etc.. for over 2 years) This did NOTHING to help me the first time. I’ve maintained a healthy diet despite the lack of much change.

-I did acupuncture 2-3 times per week (again, no change, I just kept getting worse)

-Energy healing (My biggest regret. Poured my savings into a practitioner who said he could help. After 2 years and running out of money I was worse off. This didn’t even touch the tip of damage. Eventually the practitioner blamed me for not healing, saying it must be emotional. This was the biggest BS and emotional mind-fuck I’ve had on my healing journey).

-Positive Thinking (Another fail. I did this for the 2 years while I worked with energy healing guy. The concept was, “If you think you’re healthy, you will be, you just need to change your brain and your body will follow.” Basically, I was sold hope, devoted myself to the cause, then had to admit to myself two years later when I was too weak to even lift my head and had lost 1/3 of my body weight that this was NOT working. This psychologically crushed me after being convinced 100% that this would work).

-Seeing several MDs, most of which saying they had NEVER seen this before, or chalked it up to my mind causing the problems.

For the 2nd time around this did not help:

-Magnesium (I loaded up on copious amounts of it ahead of time and during taking levafloxicin. This made ZERO difference. I couldn’t find any medical reports that really confirmed either way if it helped. There’s a short reference in Dr. Burrascano’s Lyme paper saying it may help. I stress “may” which means you’re basically tossing a coin.).

-Acupuncture (I started with acupuncture before making the connection to my past floxing. After the 3rd session, I left with more pain which didn’t make sense until I recalled what happened in the past)

I compiled a list of things that DID help the first time and am trying new stuff which I will be writing about in future posts.

My wrists hurt like hell and are swollen (they did this after the 1st floxing too) and it makes it difficult to type, so I need a break.

I’m sure my fellow floxies understand.

FYI –  It turns out there was an FDA warning in 2013 that fluorquinolones can cause permanent peripheral neuropathy. Another article said it’s more likely in Lyme patients. No one warned me of this, not my LLMD or the pharmacist.

Something that I also wish I knew before taking levafloxin, drugs like levaquin and cipro don’t completely get rid of a bartonella infection. Bartonella just builds resistence.

Further Reading:

ABC News Report Experts: Top antibiotic carries hidden side effects not listed on the label (November 3, 2014)

2013 FDA warning: Some Antibiotics Linked to Serious Nerve Damage

2011 FDA warning: Risk of fluoroquinolone-associated Myasthenia Gravis Exacerbation

2008 FDA  adds “black box” warning label to fluoroquinolone antibiotics

Todd R. Plumb MD Letter (This MD was floxed himself! A letter by a doctor for doctors to understand the damage fluoroquinolones can do. My doctor was VERY interested in this and the FDA reports when I brought copies to the office.)

Levafloxin Drug Information

Cipro is Poison! (This poor man is NOT exaggerating. I went through similar stuff the first time. He has good links too)

Ask a Patient – Levaquin

Ask a Patient – Avelox

Ask a Patient – Cipro

Heterogeneity of susceptibility to fluoroquinolones in Bartonella isolates from Australia reveals a natural mutation in gyrA

parC Mutations in Fluoroquinolone-Resistant Borrelia burgdorferi

gyrA Mutations in Ciprofloxacin-Resistant Bartonella bacilliformis Strains Obtained In Vitro


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Trick or Treat or Not-bad Cheat!

I haven’t posted in awhile because of being floxed. Yep, I now have 3 scary medical conditions that are poorly understood by most doctors. I’ll write about that in a later post because…

HALLOWEEN is COMING!!!!!!

It’s by far my favorite holiday. It brings out the creativity in people and if you just aren’t that creative, you have to appreciate the efforts people go to to dress up. If that still doesn’t do it for you, at least enjoy the happy, sugared-up kids as they bop around trick or treating.

If you still can’t get any enjoyment out of Halloween on some level (even just a tiny bit) can I check your pulse or give you a piece of candy?

For all my friend’s who can’t enjoy candy and are on a paleo, gluten-free, sugar-free, and/or dairy-free diet, I created this treat today. It was a beautiful purply-wine red and jiggles just like Jello. It tastes delicious too.

Hibiscus Lemon Gelatin Treat

 Hibiscus Lemon Gelatin
  • 1/2 cup dried hibiscus
  • 3 lemons*, juiced (1/2 – 3/4 cup)
  • 3 packs of sweet leaf stevia (or any sweetener to taste)
  • 1/4 cup gelatin crystals (I used Now brand beef gelatin)
  • 3 cups of water
Note: You could probably make this with 3 cups any strong tea or just water and add lemon juice to taste at the end (I don’t like the flavor of cooked lemons)

Combine water and hibiscus in a pot.

Cover, boil, turn off heat

Let steep for at least an hour to make a strong tea

Strain

Combine 1 cup of the tea, gelatin and stevia.

Gently heat on the stove until melted (it may smell awful, but won’t be after it’s been in the fridge).

Combine gelatin mixture, tea and add lemon juice to taste (I liked a lot).

Freeze for 2 hours and enjoy!

*I found that lemon juice masks the bitter taste stevia might have and that the powdered stevia is less bitter than the liquid.

Just for fun, here’s a picture of a meat pie I made from the Game of Thrones cookbook. Lots of yummy recipes in there.
Meat Pie from Game of Thrones

Cookbook Photo:

Game of Thrones cookbook

Further Reading:

Floxie Hope (Hope to get out of the medical nightmare I’m in right now)

The Detoxinista (Yummy recipes for restricted diets)

Cipro is Poison (Sad site with a lot of info on why EVERYONE should avoid Fluoroquinolones)

Levaquin is NOT a Cure for Bartonella (I just learned this the hard way. Levaquin also causes PERMANENT damage)

Ask a Patient – Levaquin (helpful site that reviews medications, the people here are NOT exaggerating which I unfortunately am experiencing which is why I haven’t blogged in awhile)

Ask a Patient – Cipro

Ask a Patient – Avelox


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The Malarone Mambo

Do you know how to mambo?

It’s:

step forward

step backward

rest

step backward

step forward

This is what it’s like pulsing meds for babesia. you feel like you’re going forward, then it’s like wait! WAIT! I can’t be going backwards!

This time I feel like I totally skipped the rest. I’m definitely just taking a double-step backwards right now in the babesia herx from hell.

I’ve been doing great on malarone and have been pulsing it for one week on and one week off. Some days I felt so much energy I could sing and do jumping jacks at the same time if I wasn’t in so much pain.

The week off was like being a paralyzed, zombie time. Mumbling, shuffling to get places. I’ve played the piano since I was 5 and I couldn’t even remember what the keys were in front of me when I looked at the black and white.

My doc just increased my malarone and added mepron and no more pulsing for now. Yikes, I haven’t felt this bad in ages.  All the dizziness, is like being on a scary carnival-ride gut whirler, but I CAN’T GET OFF. I feel this way when I’m sitting, laying down or whatever.

I think my safest place is on the floor because I can’t get any lower.

I’m suppose to add levaquin for bartonella next. I think I’ll wait til next week. I’ve never had a positive bartonella test, but I had the telltale streaks. Good lord! They really look like red stretch marks, but they were going in the wrong direction for stretch marks. I felt like an striped animal.

I was told once to take pictures of ALL rashes or weird marks on your skin and show them to your doctor (in this case, only a Lyme-knowledgeable doctor).

Be well everyone. I can’t wait til this ride is over! I’m ready for the exit turnstiles.

 


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Hold the BO (part 2)

Well, I tried out the carbon blanket at a hotel room. I stayed in probably one of the nastiest chemical traps ever. I picked this place because they advertise being a “green” hotel. I figured if they weren’t totally green, they might at least be willing to accommodate me since they have a “bettering the earth” philosophy.

Prior to my arrival, I asked the cleaning staff what products they use. Here’s the list:

Laundry soap – Tide

Fabric softener – Snuggles

Surface cleaner – Spic and Span

Air freshener – None, however they said they use Febreze on the sofa

Hmmmmmmm. Not really what I would consider “green.” Green seems to only mean recycle bins and energy-efficient lights at this place. In fact, what is green? Does it really mean anything? I guess it’s like the term “natural” in food products.

There’s a Simpson’s episode where Bart fantasizes about getting a job testing food additives. The testers give him a drink called “Nature’s Goodness.” I wish I could find a clip. Here’s the dialog though:

Lab Testers: We’d like you to try this new diet cola. We call it “Nature’s Goodness.

Bart: What’s in it?

Lab Testers2-4 diethyl-propinmurinol

(Bart drinks the soda and turns into this)

Bart: Sweet.

Lab Testers (observing Bart’s reaction and taking notes): Pleasing taste. Some “monsterism.”

Bart: Cool.

Here’s what “natural” means according to the FDA:

What is the meaning of ‘natural’ on the label of food?

“From a food science perspective, it is difficult to define a food product that is ‘natural’ because the food has probably been processed and is no longer the product of the earth. That said, FDA has not developed a definition for use of the term natural or its derivatives. However, the agency has not objected to the use of the term if the food does not contain added color, artificial flavors, or synthetic substances”

Anyway, I digress….

I did my typical requests for cleaning at the hotel:

Can you clean with vinegar and hot water starting a few days prior to my arrival? Yes

Can you wash the sheets in just vinegar and hot water? Yes, we’ll even pick an unused set of sheets and wash them in a separate machine.

Can you clean mattress pad since they tend to act like a sponge? We’ll remove the pad.

Can you air out the place before I arrive? Yes

Okay, time to test out this carbon (hopefully miracle) blanket. Challenge accepted. I knew that even if housekeeping did my requests, there’d probably still be chemical residue.

When I arrived at the room, none of the windows were open and it had the strong odor of something like Pine Sol everywhere. Ugh…

I was prepared though. I had all my own bedding and requested a quiet room with lots of windows and a nice view away from exhaust vents. (the hotel honored that request nicely)

I opened up all the windows and doors to let the wonderful breeze blow out the stink.

The first test was the sofa. I threw the carbon blanket (which I bought off Amazon by the way at a huge discount) onto the sofa. What do you know? It actually blocked out whatever was on there and made the sofa tolerable.

The bed was a different story. It was obvious that the sheets were washed in something scent free which was great. However, the mattress pad and the whole room just reeked. (yep, they didn’t remove the mattress pad as promised). There was also a comforter between the sheets that acted like a toxic sponge.

I brought my own pillow and sheets just in case. I learned long ago that people may have good intentions, but sometimes do a half-ass job.

I put the carbon blanket on the mattress before I went to sleep, but could still smell the awful Pine Sol. The walls, floor and ceiling must have just soaked up the odor over the years. The chemicals and fragrance had just permeated every inch of the room.

At the end of the trip I smelled the carbon blanket. The part that was facing my skin didn’t have much of an odor. The part that faced the mattress smelled God awful. So it did block out some of the funk, and I believe it did a better job than several layers of sheets.  I’d say it blocked about 80% of the stink.

By the end of my trip, my eyelid had started to split, along with the skin around my ear. I’m back at home now and both are healing nicely.

On the plus side my nose didn’t get horribly stuffed up and I didn’t get rashes which is typically what happens in these situation.

It’s taken several washings to removed the stench on the blanket. I’m on my third washing right now and I hope this does the trick.

To sum up, the carbon blanket blocks out most, but not all odors. Removing the absorbed odors one the blanket can be challenging. I’d say it’s worth it to invest in one of these because it did make my trip more tolerable.

Carbon Blanket Rating: B

Here’s a link to what I bought. I don’t know how long it will be on discount:

Natural Deodorizer Bamboo Charcoal Duvet Insert, QUEEN

Further Reading:

Hold the BO Please…

 

 

 

 

 


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Hold the BO Please…

Actually, I don’t have that much of a problem with body odor. Some people actual smell pretty good. Despite the perfume ads, people can smell pretty sexy when they don’t dump copious amounts of cologne on themselves.

What I do have a problem with is the gallon of perfume some people pour over themselves, the noxious odor from dryer sheets and the nasty chemicals used in cleaning products. Not only is it offensive, but it can cause health issues.

I love to travel, but sometimes mattresses can absorb the nasty odors from others. In this case I DO mind if the mattress reeks of sweaty BO from carnal knowledge or the pillow I’m sleeping on stinks of someone’s hair gel.

So, what do I do???? While looking for a solution, I ran across the Better Marriage Blanket. Apparently it’s suppose to block out “silent, but deadlies” in bed.

Here’s a link to the infomercial.

The commercial boasts that it’s made from military grade technology that’s used to protect against chemical weapons and that it “makes a great wedding gift or anniversary gift” too. Hmmmmmm, I don’t know, but telling your honey, “You have chemical grade farts so as a romantic gift, I got you this because you stink.” may make you have to sleep alone on the couch.

I think I’ll pass on the intended purpose.

I looked at the reviews on amazon and someone made a good point about a similar product:

It doesn’t help very much when the husband’s rear pokes out of the blanket or he decides to shift as the foul wind just escapes. 

Well, I have to say, I am going to try a carbon blanket, but for other reasons.

Further reading:

Hold the BO (part 2)

INDOOR AIR QUALITY: Scented Products Emit a Bouquet of VOCs

Volatile Organic Compounds in Your Home

Nirvana Safe Haven: Carbon Blankets

Natural Comfort: Carbon Duvet Inserts