The internet is a safe haven for people to act nasty, but it is also representative of cultural opinion at large. Based on this knowledge, I am extraordinarily dismayed that with all the PSA’s for Lyme Disease and new info circulating around it, it still doesn’t “count” as a serious illness to many people.
Of course all the details about my late stage neurological Lyme, like how I had fibromyalgia so bad I couldn’t move my limbs for a spell, were cut from Chopped, and the CO poisoning was played up because it made me look insane that a stove tried to kill me. The reactions from people, though, were still shocking: I didn’t have cancer, how could I call myself a survivor? My illnesses didn’t compare to cancer. The other two contestants had cancer, and I need to GET OVER MYSELF. Never mind that my CO poisoning– which I have very real blood work and medical records from, just like my Lyme– involved a diagnosis of Alzheimer’s by a Cedars Sinai neurologist, and the gas killed my ex’s cat, it was considered “trite” compared to cancer.
Lyme disease has a tendency to keep people laid up for years, and many simply never get well. There is no “cure,” only methods of treatment that very thankfully work for some, like me. My family and I did intensive research to find holistic treatments for both my illnesses when they each occurred, and thankfully, I successfully moved past both. My mom had cancer, and was mortified when I told her yesterday about people’s statements of my illnesses being “nothing” compared. Pain and suffering are pain and suffering, and one thing that can kill you is no less bad than another thing that can kill you.
There is simply no need, ever, to compare illnesses and minimize the suffering of others. People used the hashtag “#killerstoves” to mock my experience as minimal compared to cancer. Some even said there is no way it happened, because I’d be dead, which is clearly untrue: the ventilation problem was real, and was fixed by real HVAC people. The exposure was slow and low and not detectable on an alarm designed to only detect life threatening levels. It left me with a huge array of brain damage related troubles, all of which I have recovered from fully via holistic methods. (And most definitely NOT only with avocados, that was some fun editing.)
Our culture is rife with judgment, and social media fuels our ability to depersonalize others. We are all critics from our couches. I write this not to say I feel I was perceived unfairly (that’s a whole different blog!), but to ask people to realize that being laid up for years is a nightmare, whether or not one is sick with cancer. Period.
Note: Acute carbon monoxide poisoning = getting exposed to a high level of CO and passing out or vomiting or whatever quickly, and chronic poisoning indicates a smaller dose of exposure over a prolonged period of time (in our case, six months for sure, and potentially up to eleven more at our old place across the hall).
Also note: this is a very serious issue, and I spend a lot of time on the verge of tears. I’m not making light of anything that has happened, but rather, trying to use humor and sarcasm as a coping mechanism so I don’t go even crazier than I already am.
1. While acute poisoning is totally “normal,” chronic CO poisoning is considered “controversial,” and you have to fight for treatment. That makes not one, but TWO controversial illnesses I’ve had in recent years! Remember: it doesn’t matter what they say. As long as they’re talking about you, that’s what counts. I’ve always loved controversy, even if it is only with my insurance provider right now.
2. My musical tastes have been opened up. While my inner feminist would never have been able to look past Eminem’s grossly offensive lyrics, said inner feminist is in a bit of an intellectual coma these days, and poisoned me has been spending months having a passionate musical relationship with Eminem. I love his voice, his intonations, his lack of caring what others think of him, and his catchy beats.
3. I’m a fucking survivor, yet again. Now, at the tender age of 34, I have survived everything from devirginizing teenage date rape to a disease many people never recover from to six months of freaking chemical POISONING. And those are just the things I’m willing to share publicly!
4. Hyperbaric oxygen chambers. If you thought of Michael Jackson when I said those words, you thought correctly. They are the treatment for CO poisoning (both acute and chronic), and starting Monday, I get to spend 1.5 hours a day, five days a week, for 30-50 sessions being cool like him. Besides him being dead, the King of Pop, and likely a child molester, Michael Jackson and I are pretty much the same. How cool is that?
5. I do not ever say, “Damn you auto-correct!” like everyone else does. As someone who only remembers her name these days because she has to pronounce it so often for people who can’t comprehend ARE-ee-en, my spelling has gone way downhill in recent months, and if it weren’t for auto-correct, I probably just wouldn’t be able to text or write at all. Then where would I be? Stuck actually TALKING to people? Right. Because I’m super talented at THAT, lately, too.
6. As soon as I don’t have a headache anymore, I am going to be SO SO SO SO SO SO SO SO SO SO SO SO SO SO SO SO SO SO excited to not have a headache anymore. I’ve had a nonstop headache for four, maybe five months now. Are YOU excited to not have a headache? I didn’t think so. You just take it for granted. You probably couldn’t even care less that you don’t have a headache. But I, I am going to be REALLY REALLY REALLY REALLY REALLY REALLY REALLY REALLY REALLY REALLY thrilled whenever the big giant who has been squeezing my head all year loosens his grip. And there is little more that one can ask for than to have things to be thrilled about.
7. After the Lyme, I was a very grateful person. I felt full of love and cherished every step I took without pain, every clear thought I had, every time I put on a small-size pair of pants and they fit. Now I will be infinitely more filled with gratitude when I get all that back… again.
8. I am learning how to cope with decisions you can’t reverse. Ever since we found out what happened in here, the issue of Bill dying has been more traumatic than ever. While I don’t tend to say it, the wish that we hadn’t moved across the hall into what seemed like a dream of a three bedroom apartment has been eating away at me. Ace mentions it regularly, and I tell her to not feel guilty, we didn’t know, we can’t change anything. Inside, though, I feel that same guilt, as well as the guilt of saying, “I’m sure everything is fine,” every time Ace said that something smelled funny in here. I can’t go back. I can’t say, “You know what, I can’t really smell it like you can, but we need to figure out how to get this fixed RIGHT NOW before anyone dies.” That is so hard to live with. And I have no choice but to figure out how to live with it, and to forgive myself because the best we can do in life is the best we can do. We were already months into being poisoned, my decision making skills had plummeted, and I never fathomed that we could be getting gassed on the daily in our own home.
9. My suddenly poor math skills are understandable now, so it shouldn’t be a big deal when I say that in my head, I totally had ten good reasons thought out. But I’m all out of them.
10. See number nine. This was the best I could do. I hope I figure out how to stop wishing we never moved here, I hope Ace recovers fully, I hope my headache stops and my joint pain lessens and I stop getting my period every six weeks with PMS for three of those weeks and every other symptom I can’t remember without referencing the paper I wrote them all on goes away too, and I hope that if anyone else is ever in this situation, they speak up, as loudly as they can, as soon as they can, and they DEMAND that no stone be left unturned until their home is returned to the 100% clean habitable environment that EVERYONE deserves.
I guess I failed at staying humorous, and got a little political there. Maybe my inner feminist will make it out of her coma eventually after all.
I’ve done my fair share of activities involving cameras before… I spent a number of years modeling, and have had parts in film ranging from principal character in indie movies to Generic Background Dancing Chick in music videos. But I’ve never really spoken much on camera using words that were MINE, or about anything personal. Today, that changed when I appeared as the guest for a raw food and lifestyle program called Blythe Raw Live.
I was more nervous than I think I’ve ever been for anything filmed, because I always knew before that as long as I stuck to the lines I memorized, all would be fine. But here, there wasn’t anything to memorize, and ever since the Lyme I have a hard time feeling confident in my thinking/speaking abilities. Sometimes I misplace words, sometimes I lose thoughts in the middle of a sentence, and other times I have a thought that I just. can’t. get. out. of. my. mouth. I was such a bundle of nerves that I didn’t even get to try the really delicious looking walnut-apricot boats Blythe made on the show AFTERWARDS, because my little tummy still hadn’t chilled out enough to accept sustenance!
Thankfully, I was able to get out most of what I tried to say, and I don’t think the average person would assume there is anything particularly wrong with me, so that’s a total plus. I do feel like I look really fidgety and am kind of swaying oddly, which is funny because I was worried I’d look too stiff. The crew for the show were all incredibly sweet, and Blythe herself was one of the most shining/vibrant people I’ve encountered before. The energy level she kept through the entire show was beyond impressive; when I watch videos online, I am always drawn to those who seem genuinely excited about what they’re presenting. She has that down pat!
Here is a link to the episode of Blythe Raw Live today- which over 14,000 people watched live!! I’m about 45 minutes in, discussing my brand, Rawk-n-Roll Cuisine, as well as how I beat Chronic Lyme Disease holistically. The segments before mine are great too; the spirulina mask Blythe makes is something we are going to have to try here at home soon.
These are a few stills from the shoot:
Let the kale chip examination begin!
I don’t know why, I just love this one.
Two of our flavors: Notchos and Buffalo Bill Cowboy Kale Chips. Blythe’s expression when she tried the Notchos was priceless! People never expect so much flavor.
After all the lovely responses I received from my blog on natural products I’ve used to help with energy, I decided to write one about what helped me with two of the worst aspects of having Chronic Lyme Disease: fibromyalgia (aka, horrible pain everywhere all the time for no apparent reason), and insomnia. I only have a couple products that worked for each, but they worked very well.
My insomnia began pretty quickly after I started treating Lyme with the Rife machine. I would go to bed on nights I used it, and just not fall asleep. By five am, I’d be in tears, and I would either not fall asleep at all or finally fall asleep in late morning, only to sleep for a couple hours. Since I used the machine 1-2x a week, the insomnia would diminish as the days passed between treatments, then occur again as soon as I used the machine. Within a few weeks, it became nightly, and torturous. My LLMD prescribed me ketamine, which I refused to take. All I could think was, “K-Hole,” and, “Why the hell would I want to be on the most popular date rape drugs of the 90s?” I’d had a disastrous experience with Ambien in my early 20s and didn’t want to go near that, or any other pharmaceutical. I tried an array of supplements until I found a combo that worked:
An Shui Wan by Plum Flower Brand, approximately $15 for 220 pills: I had taken this after the Ambien disaster in my 20s, and it cured the insomnia I had in college. Not only does it put you to sleep, but it also regulates your circadian rhythms. This teaches your body to get tired at the same time every night, which is very helpful. In the past, An Shui Wan alone had knocked me out. They say to take 2-8 tiny tea pills, and I’d have success with a dosage of six or so. With the Lyme, though, I needed much more. I took about 15 An Shui Wan tea pills a night, along with:
Amantilla Extract by NutraMedix, approximately $20 for 1 oz: This alone didn’t put me to sleep, but combined with An Shui Wan, I never needed to use a pharmaceutical sleep aid. The dosage is 15-20 drops, and I generally took 30. Granted, this is twice the recommended dosage for both herbs, but given that they are natural and safe, I think doubling up is far, far less harmful than taking actual drugs. Between the two, I slept full nights the entire time I treated the Lyme. As I got better, sleep came more easily, and I backed off each of these until I slept unaided. There were no side effects at all in coming off of them.
One other thing that helped with sleep also helped with pain, so it makes a good segue. I imagine most people dealing with chronic illness or fibromyalgia are likely already familiar, but just in case you’re not:
Ever since Kramer on Seinfeld referred to taking a bath as, “steeping in a tepid pool of your own filth,” I’ve had an aversion to them. But man, epsom salt baths are sooooo important for Lyme treatment. I took one after every time I used the Rife, and it made the detox process much more effective. It also made me sleepy, and made me feel a bit less like I was made of lead. Be careful, of course, when using these if you have a serious illness, because they say it can knock you out or make you detox too fast. I never had any negative results myself. Espom salts are available for super cheap at any grocery or drug store, and it’s suggested that you work your way up to the full 2 cups slowly.
When I started treatment, my first route was the Cowden Condensed Protocol. The only thing I have to say about that is, f!ck the Cowden Protocol. It did indeed start killing the Lyme, but no matter how much of their detox herbs I took, or anything else I did for detox, I could not get the toxins out. Cowden took me from fully mobile and normal to unable to walk in less than two months. Not only was I in constant, unexplainable agony, my joints wouldn’t bend. Trying to walk, I looked like I was 80 years old. My knees simply refused to bend AT ALL, I couldn’t even sit in a chair. I couldn’t lift my arm high enough over my head to get a glass for water, let alone bear the weight of a full glass in my hands. It was such a nightmare. We went to visit my parents (I got a wheelchair in the airport, which was a new low in life, but for the record, zooms you right on through security!), and my mother nearly died when she looked at me. My sister had just gotten a Rife machine because my initial diagnosis had prompted her and her husband to get tested– both were positive– and while there, I stopped taking the Cowden products and used her machine’s detox settings. When we left a few days later, I was again able to walk. My parents then got me a GB 4000 machine, which is what she had, and I used it for three months to kill the Lyme dead.
I cannot say enough good things about this machine. Yes, it is a high initial investment (nearly $2500), but how much money does the average Lymie spend on antibiotics that have a 66% cure rate with a 35% relapse rate? Lots more, for sure. The machine can be used for everything from candida to hiccups, and I still bust it out on occasion when new health problems arise or return. It has pain settings/programs on it, and you can change the set up so that you put the pads on your hurt parts and actually feel the muscle contractions and relaxing relief. It helped immensely for pain by using the pain programs, and helped a lot indirectly via the detox settings/programs. I ran detox and pain nearly all days in between treatments. While I was pretty laid up and non-functional during these months, I was at least not wanting to die like when I couldn’t move at all.
Thermoderm cream, approximately $15 for a small bottle: slather your body in this, be prepared for about half an hour of horrific heat and burning, then settle into nearly 12 hours of SERIOUS pain relief. I LOVE this cream and it actually made me feel like I could move my limbs and muscles. With it, as I began to get better I was able to slowly start stretching again. I had gone from being someone who could touch her toes/put her hands flat on the ground, to someone who couldn’t even bend to the knee. Thermoderm loosened everything inside up, numbed the pain, warmed my muscles, and gave me a much needed mental break from thinking, “OW!” nonstop.
Ganja, mon: I’d been a TOTAL pothead for about 15 years before Lyme. When I first got sick and didn’t know what was wrong, I stopped enjoying pot and had to stop smoking it. I thought I’d grown up, and gave myself a pat on the back for finally achieving Big Girl status. What had actually happened was that Lyme f-ed up my brain and changed its chemistry dramatically, so I didn’t respond to anything the way I had before. I stayed off the crazy weed for about two years, until eventually after a lot of suggestions I tried it for the fibro pain. At first, I got a sativa from a friend, which is what I had smoked before, made it into butter, ate way too much, and spent about four hours laughing and crying hysterically. Not fun. I went ahead and got a medical marijuana card, then went to a club to ask them what they recommended specifically for pain. I alternated between two strains of indica that made me feel a lot less awful: Blue Moonshine (pictured left) and Iron Maiden (right). I smoked a very, very small amount- eating it just didn’t work for me for some reason- on a daily basis until I got better, then kept it up on occasion when it sounded like fun. Both of these strains made me feel relaxed physically but did not make me feel like I was in a mental state of panicked impending doom, like sativas did.
Last, but just as important as the GB 4000 Rife machine, acupuncture with mobile cupping: I didn’t get two Yelp “review of the day”s on this place for nothing! Acupuncture had helped me with a lot of health problems in the past, but what Antonio Whiteley of Body and Soul Acupuncture did with mobile cupping helped get me out of pain quickly, as well as catapulted me into wellness. As of when I went to him, I didn’t know it but the Lyme was basically all dead already from the Rife; I was just still having symptoms because I couldn’t get all the toxins out. The first visit I went, he did a back shu treatment and then mobile cupping all over my back afterward. Somehow, this jumpstarted my entire body. Within the first week of treatment, I could stretch again (thanks also to the Thermoderm), and within a few weeks, I was seriously doing kickboxing class videos at home. Acupuncture/cupping mobilized the toxins right out of my body, and that is when I got well. The whole recovery process, after years of illness, took less than a month, and I have not had fibro pain or insomnia since. It has been over a year since then, and I still see Antonio regularly. In the same sense that I still take supplements to keep the Lyme under control, I utilize acupuncture as a proven way to keep my body properly detoxifying.
If you are suffering from fibro or insomnia, or any other related health condition, the above options will be much easier on your system, and have far fewer negative effects (if any), than the pharmaceuticals doctors prescribe. Before you begin something that may do you further harm, please consider one of these natural alternatives.
One of the many gifts/life lessons Lyme bestowed upon me is CFS, Chronic Fatigue Syndrome. My playful description for CFS is, “No matter how many times I say ‘Go go Gadget body, it refuses to move.’” I swear, I spent so much time and energy just TRYING TO MOVE, only to remain stuck wherever I’d last planted myself. The term “feeling like lead” is the most perfect definition of CFS for me. When I recovered from Lyme a little over a year ago, the CFS mostly went away, along with the fibromyalgia, brain fog, etc., but it does still reappear when my body gets out of whack, and I do have to manage it regularly.
I don’t have the energy I had pre-Lyme, and might never; for one, I’m a few critical years older now, and for another, I think I had a pretty insane amount before. I worked 45-50 hours a week, minimum, in restaurant management, and was so highly active running around that I used to eat ice cream around midnight almost every night just so I didn’t lose any more weight- I was about 105 lbs, which at 5’6”, is skinny enough that you’ve passed enviable territory into the, “are you ok?” zone. After work, I’d generally go out to a bar with coworkers, and rarely made it home before 2 or 3 am, only to enthusiastically do it all again the next day.
I got my first symptoms of Lyme when I started my business, which took off at lightning speed; the first month, I worked over 16 hours a day trying to keep up with grocery store orders myself. At the end of the month, when I hired a staff and rented a permanent commercial kitchen, my body was shot. I’d gained 15 lbs (without even eating much- my thyroid just went downhill), I was spilling things everywhere, I cried frequently, and all I wanted was white flour and sugar (which, being raw, I didn’t even eat at the time). My body has never returned to the state it was in prior to March 2009, but I am elated with how well I’ve bounced back from the two horrific years that ensued after that month.
The following are what I use for energy, drive, and stamina. I don’t take all these things all the time, but cycle through them as needed, and tend to focus on whatever my current kick is. The sites they link to are where I tend to purchase them, usually because that is the best deal I’ve found.
This is the brand of ribose powder I’ve been using happily for awhile. I add one scoop to my pot of tea in the morning, and take an additional half-scoop prior to exercise. The dosage is higher than many other brands, so you only need one scoop instead of two like with others. You can also get ribose with magnesium malate for pain, but I didn’t find that helpful when I had fibro. If you take too much ribose, you may get edgy and snippy, so start slow.
This supplement is a GODSEND, and I’m not even vaguely religious. Unfortunately, this particular brand has been discontinued, but I still have plenty on hand because my mother buys in bulk, so I can’t specifically recommend another maker since I haven’t tried any. While NADH does not provide any palpable, notable energy, it gives you stamina. Once well, I still crashed by five pm daily, unable to make dinner or clean or anything after a few hours spent working. From the first day of taking 10 mg of NADH onward, I could come home from the kitchen and have a productive evening. I haven’t been taking this lately, as I haven’t been doing terribly much, but I take it regularly when I am active, or when I know I will have a long day. It eliminates my late-afternoon fatigue completely.
Organic, extra virgin coconut oil is something else I add to my daily pot of tea. I have about two tablespoons a day of it, and notice a minor increase in my energy level from it. It’s medium chain fatty acids are good for everything from thyroid function to liver function, and it can aid in weight loss (though it has never helped me with that).
Gaia Adrenal Support
This product made me feel SO good. Happy, vibrant, and alive. Sadly, it made me break out in huge, cystic pimples, so I can’t take it anymore. This isn’t the herb combo’s fault so much as the fault of my shoddy liver, and I still recommend it for those who do not have major issues with acne. I’ve recommended it to others, and it hasn’t made anyone else break out.
Spring Dragon Longevity Tea
I’ve posted about this tea before, but it’s worth mentioning again. It contains many of the ingredients in the Gaia formula, and unlike that, I don’t break out from it. The gynostemma has a mildly euphoric effect on me, and the Chinese herbs give me smooth, clean energy. One tea bag makes three cups of tea, and I drink 1-2 bags a day. In the morning, I combine one tea bag, sometimes a bag of liver detox tea also into a three-cup pot, and add one scoop d-ribose, 1 tbls coconut oil, and about 1/3 tsp stevia powder. It’s delicious and got me off caffeine quickly; the only coffee I drink now is decaf.
iHerb sent me a sample of CocoCeps with an order about six months ago, and it was the most effective marketing tool ever. Figuring it would taste shroomy and gross, I was amazed that this product tasted like nothing more than cocoa powder. Made of three simple ingredients- non-alkalized organic cocoa, reishi, and cordyceps- CocoCeps mixes fairly easily into any hot beverage (water, milk, etc), and tastes like a plain ole nice cup of cocoa. It does need to be sweetened, which the package mentions. It also contains 14 mg caffeine, so it isn’t suitable for those who can’t have caffeine. 14 mg is less than even green or white tea, so it’s a pretty minimal amount. I drink this every morning with decaf and stevia, prior to my pot of Spring Dragon, and it makes for a super healthy, delicious mocha.
I paid about $35 for my rebounder, which I chose based on the fact that it was foldable. I envisioned a product that would be similar to something on the Jetsons, and go from the size of a car to that of a briefcase. Alas, it was way more of a pain than that, and has stayed open the whole time I’ve owned it. As you can see from the clickable link, jumping up and down like a kid on a little trampoline is very good for you, and the fact that you get twice the exercise minute-for-minute on a cellular level is an added bonus. If I don’t feel up for much, I at least try to use it for a couple minutes, and I always feel better afterwards. Generally I use it for 20-30 minutes, with 2 lb weights in each hand for half the time I’m on it.
On the one hand, this stuff is really expensive pond scum. On the other hand, it is one of the most concentrated phytonutrient sources on the planet, and it’s excellent for your health. It also provides a solid boost of energy, and the one with “BrainOn” helps with clarity of thought. I use this occasionally, one ounce a day in the morning after teas and before breakfast. I tend to go through a full bottle in a short time, since it’s only good in the fridge for a week, then pause awhile before the next bottle.
Whether you are so fatigued that you can’t reach for the remote, or you just would like an extra competitive edge on life, I encourage you to try any of these products. I know I wouldn’t be able to have written all this without them!