Emergency Room AKA Lyme Ignorance Room

Well, as this week progressed, so did SCARY symptoms. I am extremely resilient, I don't think I complain as much as I could or probably should, my symptom tolerance seems to be high, and I seem to be in tune with what's wrong with me. Yesterday was not like that. I still have a hard time explaining how I was feeling other than I felt like I was dying. I started to worry about my organs. My liver, gallbladder, spleen, kidneys, etc, etc. So, I went to the ER and told them as best as I could what I was feeling. Heart flipping around in my chest, breathing issues, shaking, sweating, and pressure. So, they got me back and hooked me up to everything. I literally told myself I am NOT going to say I have Lyme disease because I could pretty much foresee how that would go. Then, Dr. Condescending came in. I have read countless things about doctors telling us Lymies that we are ANXIOUS. That's what this doctor did. I looked at him dead in the eyes, with probably Lyme green hellfire burning in my pupils, and said through clenched teeth, "My symptoms are MAKING me anxious, but anxiety is NOT causing my symptoms". He asked me question after question after question and finally got it out of me that I have Lyme. He literally said with a smile, "Lyme disease. Who diagnosed you with that? Where'd you get that? South America?" I have never been so infuriated in my whole life. I tried so hard to be respectful but I am pretty sure I was not. I danced around the topic as best I could, and tried to just tell him I want my organs scanned to make sure they're okay. He rolled his eyes and said, "Well, if it makes you feel better". When he left the room, I started shaking out of rage. My husband was even mad, and he is generally an easy going guy. So, the doctor came back in, did an ultrasound on all my organs, and told me they were all perfect. He said he'd send me home with a halter monitor or whatever they're called, but I declined and started unhooking myself. Was I glad to know my heart and spleen weren't inflamed from Lyme? Yeah. However, I know that can happen with Lyme and people die from it! They have surgery for it. I wanted to make sure that was not happening. So, we went back home, and I got on the internet and researched Babesia flare. That is what is happening to me. It's been so long that I've had one that felt life threatening, and I guess I forgot what it felt like. Why am I flaring? We are having monster snow storms here, there is a full moon, it's that time of the month, I've been lax on detox, there has been lots of extra activity and stress in my life lately, and to be honest I thought I was winning this fight here for a minute. This is SO rough! I wake up shaking and sweating with a rapid heart beat before my body even has a chance to go through the last normal sleep cycle. I have AIR HUNGER like you wouldn't believe. If it weren't for watching my heart on the EKG, and seeing my oxygen levels, I would think I was suffocating to death. I have enough oxygen, but it feels like when I used to wrestle with my brothers in pillows when we were little and I would have to start screaming for them to let me up. But I'm just sitting here with burning lungs, completely calm, with enough oxygen, but with the feeling of actual suffocation. My heart beat feels like it's in my stomach, then my throat, then skips some beats, then beats to hard, then flips, then I don't even know. My Postural Orthostatic Tachycardia is back. I walk up the stairs and don't even know why I walked up the stairs, then walk into a room and don't even know how I got there. I was on hold on the phone earlier this week and forgot I was on hold like 5 seconds in. I'm also having weakness that I can't describe. Like my body is empty. Like my spirit is trying to escape. Like floating or something. There are not even words to describe Lyme symptoms. New words need to be invented.

I took my own blood pressure, and I've been monitoring my blood sugar and am in the middle of taking new saliva tests for adrenals and hormones. It's so hard to feel like this over the Christmas season, but I have experienced joy. I have CHOSEN to experience joy in the midst of absolute suffering. It IS possible, and my thoughts are with all my other Lymies having a hard time right now. I'm relapsing, or flaring, or herxing. I don't really know. My legs are burning with seering pain, and a lot of symptoms that left are back with a vengeance.

Also, for the record, I just want to say I admire doctors who work graveyard shifts in the ER over the holidays. They are absolutely incredible human beings who do what I could NEVER do. They are some of the most important people on the planet. My rage was not necessarily or personally directed toward this specific doctor. It was toward the complete and utter LACK of Lyme disease education in the medical community. The complete disregard is just so sickening I can't stand it. The crappy tests and the lack of technology. It's not the doctor's fault. It's not. I'm actually not even sure whose fault it is, but placing blame would accomplish nothing anyway. It's just the strangest most helpless feeling in the world to feel as sick as you do, and have zero help in seemingly emergent situations. My sweet family doctor tried to help with blood tests a couple days ago, but of course, nothing came up. All my test came out "normal". I am a VERY sick person, but at least I'm a "healthy" sick person?

Sensory Overload

A year ago, I hoped I would be well enough to go to a movie theater and see the new Star Wars movie with my husband. As the release date got closer, I realized that I would not be better in time. However, I decided I was going to go anyway. So, I took an anti-nausea pill, drank a lot of magnesium, put on my sunglasses, put in my earplugs, got under my blanket, and sat in the very back row with my husband. I looked at everyone with popcorn and candy and hoped that nobody would find out I had my gluten free, vegan, non-gmo, paleo, corn, soy, and dairy free snack in my pocket. I looked at everyone with soda and then looked down at my bottled water. I sat by the stairs in case I couldn't handle it, and had to leave. I knew at any moment, I could experience sensory overload. I could start shaking. I could start hyperventilating.

When the movie started, my brain couldn't adjust to the words on the screen for a long time. However, the sunglasses and earplugs helped keep my nervous system calm. I was pleasantly surprised that I was about 60% safe from everything that was going on. How strange it is to basically induce temporary mild blindness and deafness in order to even have a shot at experiencing something so normal to most.

My stomach acted up really bad during the movie, and was pressing on my lungs a lot. I hoped the lady next to me could not hear my constant belching as a result of Lyme completely wreaking havoc on my digestive system. I worried about not being able to put my legs up. They just had to hang off the chair, affecting my blood pressure. I worried about the seat affecting my joints. When the movie was over, my knees were all locked up and I had to hobble down the stairs. My brain had to adjust from the theater screen back to real life, which was a little unsettling.

I used to be someone who loved big crowds, loved loud music, loved crazy movies, etc. I actually still am that person. It's just so weird to be in this altered body with this altered brain that doesn't allow me to be who I really am. Today I watched a football game but had to sit behind the couch most of the time so as not to be totally overloaded. I love football, and actually couldn't even process it last year. The fact that I'm able to this year (barely) does say something.

The fact that I was able to accomplish any of this is a big deal to me. Measly to other normal, healthy people, but big to me. I get glimpses of normalcy here and there. Here's hoping for more of those glimpses more often.

P.S. After almost dying from disease, I decided I don't like ANY movies where people die. Don't worry, I won't say who dies in the movie, I just take it a little more seriously than most people do I guess. Seeing death and suffering, fake or not, I guess flares up some PTS a little.

Never Too Sick To Try

I forced myself out of the house to go experience life this past weekend with my little family. I refuse to withhold making memories with them, no matter how I feel. I very slowly did a lot of activities these past few days and despite horrendous car sickness, seriously low blood pressure, confusion and memory loss, weakness, and horrendous stomach issues, I smiled for the camera. We must never decide that we are too sick to smile, and I will never let myself be too sick to "try" to not be sick. I definitely have windows of wellness. I do. Lyme gives you bad days and okay days. I take advantage of my okay days full force. People don't usually regret the things they've done. They regret the things they haven't done. I don't want to have any regrets as I go through this illness. I just plow forward, even knowing I'm going to pay for it flat on the couch for hours the next day, like I did today. Today has been awful. My stomach, I think, must be swollen or something. I have every symptom of H-Pylori, but my test was negative. So, it's just Lyme bacteria doing exactly what H-Pylori bacteria does. Except maybe worse. I'm getting disautonomia from an irritated vagus nerve I think, which makes me feel like my body is going to shut down, and I must have gastritis. I need to figure out how to calm my stomach down. If it's not calm, I can't get any of my supplements down. And if I can't get any vitamins, minerals, and herbs down, then I'M down. Many horrible symptoms have been returning these past few days. I need to get back on top of this ASAP. 

My Detox Remedies

I always hear that if you're going to HELP your body kill Lyme bacteria, then you have to HELP your body detox the mess it leaves behind. Here is what I am currently doing to detox.

 ACTIVATED CHARCOAL CAPSULES

Charcoal is said to adhere to the nasty endotoxins that the Lyme bacteria releases when it dies. These toxins are what makes a herx so miserable. People also use this when detoxing from heavy drug use.

BETONITE CLAY CAPSULES

This acts as a binder in the intestines, and helps carry out any toxins trying to pass through them. 

 IONIC FOOT DETOX SPA

These are said to be controversial but I unexpectedly feel better after using them. They supposedly draw out toxins from the feet. I use pink himalayan sea salt in the water with it. I do this twice a week. I notice I feel worse when I DON'T do them after Lyme-killing treatments, too.

GREEN JUICES 

Ginger, Lemon, Kale, Spinach, Celery, Cucumber, Green Apples, Etc

 INFRARED SAUNA

Not only are saunas good for pain, mood, and circulation, but they help you sweat out toxins. Be sure to drink plenty of water before, during, and after a session. I also like to do a hot/cold shower after, and replace lost electrolytes. I try to do this every other day.

DRY SKIN BRUSHING

This helps stimulate your lymphatic system, and is great to do before epsom salt baths or before getting into the sauna.

LEMON

Whether you're using fresh lemons or lemon essential oils, they are a great for your liver and stomach. It's best to drink it with a straw so it doesn't affect your teeth. 

ZEOLITE

This negatively charged mineral acts like a magnet. It attracts harmful, positively charged metals to itself, traps them, and carries them out of the body. Great for heavy metals. What I take is powder in a capsule, but there are also sprays and liquids.

As always, we are all so different. Lyme and treatments for Lyme affect all of us so differently. I'm not a doctor, so please check with yours if you're interested in trying any of these remedies. 

My Lyme Pain Remedies

Since I've been herxing so badly this week, I've been having to use a lot of things to help with my pain. Usually it's tolerable, but lately I've been doing and taking any and all natural remedies I can get my hands on. Here's a list of what I personally* use. 

                                     

Minagin is probably my favorite remedy. Back when I injured my SI joint two years ago (which still hasn't healed), this was the only thing that would help with the pain! I've been putting it on my neck, and lower back. It also REALLY takes away swelling. You can order it at www.herballodge.com. It seems to help with the pains that nothing else would help with. This is a pretty special salve, and I'm so grateful to the beautiful people who created it. 

                                                   

I have found that over the counter "pain relievers" and prescription drugs really didn't do anything for me. My current doctor has me on this supplement, which I have just started to take. So far, so good. 

I'm sure a lot of people know about Deep Blue. I have a lot of doTERRA oils, and I'm thankful for this one.

This stuff just seems to calm my whole body down in general. It's great for anxiety, pain, etc. It has some side effects if you take too much, though. 

I have an infrared belt that came with my foot detox machine. I put it around my shoulders when my upper back hurts, and around my hips when my SI joints hurts. 

I heat my rice bag up a lot. This is a cute one I found on Etsy. Moist heat is good, so these things are perfect for pain. They have brought me a lot of comfort, too. 

I know not everyone with Lyme has SI Joint Dysfunction, but for those that do, this SI Belt is a must.

Infrared Saunas are magic for widespread pain. The first few times I sat in one, I literally walked out confused. I was not expecting such a reduction in pain. I have a portable one I bought for a couple hundred bucks, which gets me by, but the big expensive cedar ones seem to work much better.

                                       

I have a good memory foam mattress that I really think helps my pain. My ligaments are so infested with bugs that they do a really crummy job of holding my joints together. Memory foam makes me feel secure and supported so I don't wake up feeling tangled in my own bones.

                                       

I know good chiropractors are few and far between, especially those who believe in Lyme. But if you can find yourself a good one, it could be really beneficial. I honestly believe I would not be walking if it weren't for mine. I go to her maybe 4 times a month. It used to be more, but I've made progress. 

*Because we are all so different, and this disease affects us all so differently, check with your doc if you want to try any of the above. 

Voodoo Doll

I'm actually very weak and, quite frankly, not very with it. Here's to hoping I am making some sense.

So, this new treatment I am on is making me Herx in ways I never have before. I've been treating this disease for nearly an entire year now, but have never felt the way I am feeling now.

So, the protocol I did earlier this year was basically IV's of hydrogen peroxide, hydrochloric acid, Myers cocktail, and megadoses of Vitamin C twice a week for seven months. I had to stop due to financial and travel reasons, and actually had a fairly okay two months off.

Now I am with a new doc, at a new place, with a new protocol and ermergersh.

It's not pretty.

Hence referring to myself as a human Voodoo doll.

So, this Herx has made me think the following thoughts today:

"Hm, that's weird. I have all the symptoms of a heart attack, yet I'm not having a heart attack?"

"I think an ovarian cyst may have just ruptured"

"I should probably have my appendix taken out or something"

"I think something is burning holes in my stomach"

"I think my gallbladder and liver are clogged, but I can't feel them"

"I'm not sure if that was a power nap, or if I briefly passed out"

"I've had kidney stones AND a child so, I know pain. Those were the good 'ol days"

"I should probably go see a doctor but I know what the result will be, so I'll just stay here"

Excuse the brutal honesty and complete and utter transparency (I'll spare you the description of the intestinal issues), but it's the only way to paint a realistic picture that so many need for peace of mind, answers, and ideas.

So, I did a couple chelation IVs the first couple weeks, and then last week was my first PK protocol IV. I'm taking several supplements, too, which I will list later.

I'm fatigued like I've never been before, my muscles are twitching, my neck is completely seized, my ligaments are struggling to hold things together (ankles, wrists, knees, elbows, SI joints, and shoulder blade/ribs), I don't feel present (out of it), my heart is slowly pounding, my stomach hurts, I have random stabbing pains everywhere, my circulation is very poor, my body temperature regulator is busted, and my "fall asleep" is busted, too.

However, as unpleasant as this is, this only means my treatment is working. Lyme bugs are perishing. Yeah, they're releasing endotoxins and practically poisoning me, but they're dying nonetheless.

So, I have to keep telling myself this.....

and this.....

and this.....

Also, please remember, I'm not complaining. I'm merely explaining. I'm very accepting of the things I'm going through, and I hope I can help others come to terms with it, too.

P.S. I will mention one thing, though. I woke up at 5am sobbing because my neck hurt so bad. I rarely cry compared to all the reasons I have to cry. Anyway, luckily, my favorite chiropractor was there for me, as always, and helped my pain go from intolerable to tolerable without passing any judgement whatsoever. Thanks doc!

Breakfast

Generated this MEME today. All my Lymies can relate:

Breakfast looks like this for me every morning. It takes a full two hours of concentration to get this all in my body. 

Food is medicine, except for this case, in which medicine is food. 

Then, about 8hrs later, I have to do it all again after dinner

Bon Appetit!

It's Never JUST Lyme

When I say, "It's never just Lyme", it's because Lyme disease does numerous amounts of damage to countless parts of the body. To me, it causes or contributes to other ailments. Yeah, you could probably kill some Lyme bacteria with antibiotics and other treatments, but what about all the damage it's left behind?

Here is a list of all the things I have besides Lyme. Did I have these before Lyme and my tanked immune system made them worse? Or did Lyme cause them? It's really the chicken or the egg. I just have a lot of fighting and repairing to do BESIDES Lyme. Maybe some of these are even Lyme masquerading as these conditions:

Babesiosis
Bartonella
Benign Positional Vertigo
Borrelia Burgdorferi (The Lyme itself)  
Dysautonomia
Epstein Barr Virus
Fibromyalgia (I'm seriously wondering if this is even a thing)
Gastritis
Hashimotos Thyroiditis
Heavy Metal Toxicity (Cesium, Mercury, Tin, & Tungsten)
Hiatal Hernia
IBS
Iron Deficiency Anemia
Klebsiella Pneumonia
Leaky Gut
MTHFR Genetic Mutation
Mycoplasma Pneumonia
Ovarian Cysts
Peripheral Neuropathy
Postural Orthostatic Tachycardia (POTS)
Postural Orthostatic Hypotension
Piriformis Syndrome
PMDD
Restless Leg Syndrome
Raynauds Syndrome
Sacroiliac Joint Dysfunction

Silent Migraines
Tinnitus
Trochanteric Bursitis
Vitamin & Mineral Deficiencies

Anybody else notice I have a condition for literally over half of all the letters in the alphabet??

So, with about 30 different conditions comes about 30 different supplements, medications, remedies, you name it. I'll get into those a little more later.

But as I said before, it's never JUST Lyme Disease.

The PK Protocol

Yesterday, my doctor muscle tested me for several different oral supplements, as well as nutrients to put in my IV Bag. Phosphatidylcholine came up with Glutathione, which led us to put me on the PK Protocol, developed by Dr. Patricia Kane. Originally my doctor put me on a heavy metal chelation IV protocol, but the herx was so awful and lasted me all week. While I know all too well that herxing just comes with the Lyme fighting territory, plain and simple, it was a LOT. It felt like when the chelation fluid pulled heavy metals (I have mercury, tin, tungsten, and cesium), it broke through bio-films in my tissues and activated the bacteria in my bloodstream. We may do some Ozone soon, which I have done in the past, and probably come back to chelation at a later date.

The glutathione in my IV HURTS MY ARM! It makes all the pain in my body worse, and it makes me SO nauseated. I'm going to tough it out, though, 'cause I have read SO many things about it, and all of it is good. I've been thinking about glutathione and wanting it the past few months and I'm finally getting it. 

Here's a great article with more info on the PK Protocol below:

http://www.nourishbalancethrive.com/blog/2014/11/25/pk-protocol-chronic-lyme-disease/

Lyme Disease

LYME DISEASE

From Wikipedia, the free encyclopedia

Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by bacteria of the Borrelia type.^[1]The most common sign of infection is an expanding area of redness, known as erythema migrans, that begins at the site of a tick bite about a week after it has occurred. The rash is typically neither itchy nor painful. About 25% of people do not develop a rash. Other early symptoms may include fever, headache, and feeling tired. If untreated, symptoms may include loss of the ability to move one or both sides of the face, joint pains, severe headaches with neck stiffness, or heart palpitations, among others. Months to years later, repeated episodes of joint pain and swelling may occur. Occasionally, people develop shooting pains or tingling in their arms and legs. Despite appropriate treatment, about 10 to 20% of people also develop joint pains, have memory problems, and feel tired much of the time.^[2]

Lyme disease is transmitted to humans by the bite of infected ticks of the Ixodes genus.^[3] Usually, the tick must be attached for 36 to 48 hours before the bacteria can spread.^[4] In North America, the only bacterium involved is Borrelia burgdorferi sensu stricto, while in Europe and Asia, the bacteria Borrelia afzelii and Borrelia garinii are also causes of the disease.^[1] The disease does not appear to be transmissible between people, by other animals, or through food.^[4] Diagnosis is based upon a combination of symptoms, history of tick exposure, and possibly testing for specific antibodies in the blood.^[5][6] Blood tests are often negative in the early stages of the disease.^[1] Testing of individual ticks is not typically useful.^[7]

Prevention includes efforts to prevent tick bites such as by wearing long pants and using DEET.^[1] Using pesticidesto reduce tick numbers may also be effective.^[1] Ticks can be removed using tweezers.^[8] If the removed tick was full of blood, a single dose of doxycycline may be used to prevent development of infection, but is not generally recommended since development of infection is rare.^[1] If an infection develops, a number of antibiotics are effective, including doxycycline, amoxicillin, and cefuroxime.^[1] Treatment is usually for two or three weeks.^[1] Some people develop a fever and muscle and joint pains from treatment which may last for one or two days.^[1] In those who develop persistent symptoms, long-term antibiotic therapy has not been found to be useful.^[1][2]

Lyme disease is the most common disease spread by ticks in the Northern Hemisphere.^[9] It is estimated to affect 300,000 people a year in the United States and 65,000 people a year in Europe.^[1][10] Infections are most common in the spring and early summer.^[1] Lyme disease was diagnosed as a separate condition for the first time in 1975 in Old Lyme, Connecticut (it was originally mistaken for juvenile rheumatoid arthritis).^[11] The bacterium involved was first described in 1981 by Willy Burgdorfer.^[12] Chronic symptoms are well described and are known as post-treatment Lyme disease syndrome, although it is often called chronic Lyme disease.^[13] Some healthcare providers claim that it is due to ongoing infection; however, this is not believed to be true.^[14] A previous vaccine is no longer available. Research is ongoing to develop new vaccines.^[1]