Wednesday, November 16, 2016

Accepting That I am Sick



As I lay here, with my body shaking, feeling weak, feeling internal tremors racing through me and kinda feeling like I might throw up, I realize I am sick. I realize I have to acknowledge my limitations and really not feel bad about them.

I am tired of feeling guilty for being sick.

I am tired of feeling guilty that I haven't gotten better.

It's just time to acknowledge what is and live as comfortable and as giving as I can in the last part of my life.

A little while ago my little granddaughter asked me to go to the park. So I drove separately so that I know I can leave if I should have to and not ruin their time. We played, I watched her play, laugh and run around. We walked the trails and sat by a pond. It was so pretty. My body lasted fifteen minutes. Then I excused myself and drove home all shaky.

It makes me sad. I want to stay longer. I am gracious for those lovely fifteen minutes of my granddaughter playing. Of watching my son in law play with her like the good daddy he is. Of feeling the sun on my face. Of hearing the Fall leaves blow in the breeze. Of feeling the pine needles crunch under my shoes. 

I noticed every detail of today. The air, the sounds, the smells, the feelings my lovely playful little granddaughter was experiencing as she run through the trails and grass and went down the slide holding her daddy's and my hands. If there is anything that life is about, it is that right there. Love, unconditional love. Nature. God.



I feel like today might of been my last day out. I came back so weak. I wish I could have a million more of these days, or moments. But I feel so weak. Each outing has become harder and harder. I am sad I won't have these days with my other younger granddaughter. I want to see and feel her joy as she races through the park too.

People tell me to hold on, one coach I worked with lately made me feel guilty as they view my acceptance as "giving up." Actually even accusing me of "sabotaging my health." Few of the doctors that I have gone to will even acknowledge I'm sick. But here I lay all shaky and weak, feeling like my time on this planet is limited, very limited.

And I am sad. I want to watch my grand kids grow up. I pray that I can from wherever it is that we go.


Children and grandchildren, please know that I love you. Please know you are my world. I have left a letter for you on my computer. I love you so very much and if possible I will be watching over you everyday. I promise not to scare you. Haha

Lyme friends, please know that I love you too and hope that you do find your answers. I will be up wherever it is that we go, standing with our fellow warriors that have gone before me.  We will all still be with you. 

Sorry I'm getting very emotional writing this, but I just feel this needs to be said to all of you.

Don't feel guilty for being sick.

Don't feel guilty for not getting better.

Don't feel guilty that you can't do what you want to do. The point is you want to, it's the universe that sucks for not letting you.

Don't blame yourself.

You are trying hard.

Don't let other make you feel guilty for being sick. You did not "negative" think your way into being sick.

Find those that lift you up, not bring you down, talk down to you, are condescending to you, even if they do it in the name of love, light or some other spiritual message.

Know in your heart that if you could play with your grandkids or children that you would. You would drive them to school if you could. You would be more a part of their sports and school shows if you could. You would be a better partner, wife, husband, boyfriend or girlfriend if you could. If you could so those damn dishes or take out the garbage you would. If you could go shopping for yourself or family you would.

It is not your fault that doctors, friends and family judge you and don't understand your illness. 

Just let go of these negative things and realize that you are in the position you are in. Do what you can from that position and make the best of it without feeling guilty for what you couldn't do. Sometimes breathing is all you can do. Sometimes you can watch a movie with your kids, sometimes cook a meal. Each day, each moment will always be different. Don't expect too much of yourself.

Now feel this (((((( HUG )))))))) and anytime you need a hug come back here and feel it again. 


Monday, October 3, 2016

C. Diff and Clindamycin: My Toughest Battle Yet



Ok I thought Lyme sucked, and I thought my TIA sucked. But this C. Diff battle is taking things to new heights.

And how ironic is it that I am one of the few Lymies that don't think long term antibiotics is the solution, at least not for myself. So after the first six years of going on them then going off again I took a more natural route and only did homeopathic or alternative treatments.

So skip ahead to my C. Diff experience...

Well about a month ago I went to my cousin's wedding. While I was there I experienced what I call one of my "Lyme episodes." I bent over to kiss my little granddaughter on the head and then the I got a shock like feeling in my head. Everything went gray and then when my vision came back my vision wouldn't "hold still." I can't say vertigo as it wasn't necessarily spinning. You know how when you watch CNN and the news scrolls by really fast at the bottom of the screen and if you try to look away you can still see it? Well it's kinda like that. It's like whatever I am trying to look at is moving, even thought it's not.

So my dad brought me back to the hotel room I was staying at. I sat in one position all night trying not to move, trying to hold my vision still. It makes you really dizzy.

Usually these episodes will affect me for about a day. After a week of not getting better, I asked my son if he would drive me to the ER where they said I probably have an inner ear infection, even though  my ear looked clear. They put me on four meds, steroids, Clindamycin, Metclizine and Zofran.

If only I had known then what I know now.

Up to 30% of people who take Clindamycin get C. Diff from it. The doctor had given me a script for seven days. After five days on it I felt "toxic." I just stopped it on my own thinking it was just too strong for me. Please read: Clindamycin Can Cause Disastrous Diarrhea

About two weeks later it started. I started having diarrhea a couple times a day. At the time my little two year old granddaughter that I live with was also having diarrhea and I just thought I had caught a bug from her.  A couple days went by and she got better, I got worse.

It got so bad I could not leave the bathroom. There were two nights I literally sat in the bathroom pretty much the whole time from 10pm to 6am. Not easy when sharing a bathroom with three other people. The diarrhea turned from normal diarreha to blood and mucus. The cramps were unrelenting. It honestly reminded me of labor, when you get that pain and urge to push, only there was nothing left of push out. My whole abdomen just endlessly burned and cramped and had a "full swollen" feeling.

I got so shaky and weak that I asked my son to take me back to the ER again. They told me I must have a bug, but my heart rate was high and I was dehydrated so they gave me one iv of fluids, then sent me home. The next morning I called my doctor and asked if she could give me a stool sample test. I thought maybe I had giardia. I didn't' even think about C. Diff at this time as I hadn't taken long term antibiotics or had any long term stays at a nursing home or hospital where I had heard of others getting it.

But the next day my doctor emailed me and told me I had tested positive for  C. diff and there was a script of Flagyl sitting at the pharmacy for me. I took the Flagyl and on the third day started to feel some relief. I felt so much better that I was able to go with when my new granddaughter was born. I felt good for about three days after that and though it was all behind me.

But then it hit again. I woke up in the morning and had a stomach ache. I think I was in denial and kept thinking it couldn't be coming back. But by nighttime I knew. I tried calling my doctor but she was gone out of town and had no back up doctor so I headed to the ER once again. They put me on two more weeks of Flagyl.

I am about a week into it and soooo sick. I feel weak, and shaky and foggy and not normal at all. I feel toxic or poisoned.

I am looking into all natural treatments too. I read a bunch of patient forums that have helped teach me about some alternative treatments that doctors would never recommend and I am going to try it. I will post updates here as I go. I know there are a lot of others out there suffering from this too.

The things I'm trying are: Oil of Oregano, vit C, probiotics, kefir, protein drinks with enzymes, charcoal, clay, turmeric, essential oils and barley water.

We are wiping and sterilizing everything with bleach and hospital grade Clorox bleach. For those of you that don't know, alcohol and other disinfectants do NOT kill C. Diff.

C Diff is actually a lot like Lyme. It forms biofilms and spores when faced with antibiotics and waits til it's safe to rear it's ugly head and turn into infecting bacteria again. It can live on surfaces for months, some articles say years. ONLY BLEACH KILLS IT. And even bleach has to be on it for at least three minutes to be affective, some articles I read said six.

If you have been through this and have any suggestions please post them below. Not just to help me but to help anyone reading this. This is one scary disease. Lyme was bad enough,  this is making me feel like I'm going to die. I can't eat, I'm so weak, I have horrible anxiety, I can't sleep and I live in fear of giving this to someone else now.

Here is a collection of C. Diff Forums, and alternative treatments that I have collected.

Friday, April 15, 2016

New Treatment Protocol Overhaul

Ok so the Bee Venom Therapy didn't work out for me.. I hope it does for others and it seems to be.

So moving on to new healing aides and lifestyle changes. 

I realize a big part of what I need to do is get my pain under control. As it is right now I have to be in bed nearly all the time. I can barely walk, play with my grand daughter or shower. Everything is just painful because of my back and shoulder.

So here's what I am doing in the moment.


Chiropractor



Getting adjustements:  I started out weekly and now going to every other week. Just doing my upper back right now because I'm scared of  my lower back as a prior chiro experience messed my lower back up badly. So just starting with upper back for now.

Results so far: So far my chiropractor has fixed my upper back rib pain that I woke up with and lasted two weeks. I believe it was a sublexed rib.

Laser Light Therapy: I started going to get this done at my chiropractor 3x weekly. I did that for two weeks then moved down to once every other week. I would do it more but finances only allow for every other week. I did buy an at home machine too that I use a couple times a day. I bought a Light Relief System and I'll let you guys know if it works after I have been doing it for awhile. You can get one of these on Amazon for pretty cheap. Check it out here: Light Relief Infrared Pain Relief Device.

Update: I have been doing this for about a year now. I LOVE it and still use it daily. Love the heat setting!





Accupunture


I am getting acupuncture for back pain. It seems to work great the day of.. but then the next day back to the usual pain. My chiropractor works with a lot of Lyme patients and he says its not uncommon for accu to not control pain in Lyme patients. He suggested electrically charged water.

Electrically charged water: I have no idea what this really means. It is water toned to the frequencies of certain diseases and what heals them, so that is what I am trying. Sounds woo woo I know, but i met some people (including health care workers) and they told me he helped them, so that is what I am doing too.




Biomat


I use my Biomat daily. I lay on it mostly at night for several hours, hoping the infared heat is healing my damaged tissues/muscles inside my back. It feels great when I'm on it but hoping if I do it enough I will get more lasting results. Right now it helps relieve my muscle spasms in my back when I lay down, but as soon as I stand up my back hurts again.


Hemp Oil

Rubbing this on my back and shoulder throughout the day.

Supplements


I am one of those people who reacts negatively to most meds. Especially anything sedating like allergy pills, pain pills, anti anxiety meds... I just can't take them. So I am taking some supplements that are supposed to help reduce inflammation and just aid in healing. Also some that were recommended by my gene testing results.

Turmeric, Fish Oil, B 12, and  Calcium Ascorbate (Vitamin C) Powder & Fibro Cream.
Since C. Diff I also added in Oil or Oregano, Aloe Vera Capsules, Garlic Capsules, two forms of probiotics, Bentonite Clay, and CBD oil along with Prodovite.

Everyone asks me what kind of Cannabis or hemp oil I use.. so this is the two I have tried.
1. Green Garden Hemp Salve


Leave me a comment below what you are  doing to try to get better, and what results you are getting. I would love to hear it!

Update

June 2016: It's been a couple months now since I started this routine with hemp oil, the Biomat, the light machine and Im doing about 75% better. Seriously out of all the ridiculously expesnive Lyme treatments I have tried that didn't work, this is the cheapest route I have gone, the easiest and most painfree and it's totally helping me with pain.

I am still dealing with awful fatigue and depression feelings though. Still need to find something to help that. 


Thursday, January 28, 2016

Week 1: Bee Venom Therapy for Lyme Disease, EDS and back pain.


Suzy Q watching the bees.
The First Week of Bee Venom Therapy

Ok, so the first week was harder then I thought it was going to be. I knew it would be hard, painful and I'd have some flare up, but man, I feel really sick.

The stings themselves are different each time. The first sting hurt but only for like five seconds then it numbed itself. The second sting, I barely felt while she was stinging me but then afterwards I could feel the stinger pumping out venom burning the nerves for like fifteen minutes. After the stinger was removed I had a sensation that it was traveling through the nerves in my back. The third sting really shocked me at how bad it hurt. It felt like someone put a cigarette out on my back. It lasted much longer then the others.

I woke up feeling very sick and toxic, herxy feeling. I almost had the feeling I should wait to do another sting but I felt if I couldn't make it through this first week even, what were my chances of any success? So I pushed through and my daughter Britt helped sting me.
My daughter keeping track of bee stings.
Throughout the day I just felt so sick. My lymph nodes in my groin and armpits swelled up. I developed a low fever and I just could barely stand. I got sharp pains in my heart which alarmed me. The stings are itching so badly I can almost not take it. Icing my back relieves it to some extent. Holding onto the hope that that goes away after the first month like everyone in the Bee Venom groups say.

So tough first week for me. I feel like a big baby saying this as others are stinging themselves ten times, three times a week and I'm having troubles with one sting. 

One thing that I think is  helpful to point out, is that my daughter Brittany went and got me a calendar to keep track of stings and reactions. This will be helpful in so many ways. You know how us Lymie's brains don't always work just quite right, so now I'll be able to look back and remember what happened at certain times.




This first week I:

  •  Did Test Sting
  • Stung 3x after test sting. 
  • Educated myself on Serum Sickness.
  • Brittany made a wonderful chart to help keep track of stings and symptoms.
  • Dranks lots of lemon water and alka seltzer gold to detox.

I have to say the hardest part of this for me, is still killing the bees. I have not made peace with thinking my life is more important then theirs yet.


Update

Sadly after the first week of BVT, I had to stop. With each sting my reactions were getting worse and worse. After the third sting I had a feeling I should stop but I pushed myself to do one more. That night was one of the scariest nights of my life.  

As usual right after the sting I barely had any reaction. But a couple hours after I started getting really bad pain around my lungs. My sister was over visiting from out of state and I had to go lay down. I couldn't even sit and talk to her. 

The bite started burning and becoming bigger and bigger. It didn't feel right. I started getting a feeling like it was swelling inward as well as outward. The redness started spreading across my back to my side and to the front of my stomach. All my lymph nodes swelled and I had red welts in random places that looked like stings but were not where I had stung myself. 

I developed a fever and bart like rashes all over my back and butt. I had pimple like things spread all around the bee stings. It was one long night. One of the BVT leaders told me my reaction was totally normal and that it was the venom killing pathogens, but my body told me that it was just too hard on my body. I was sick for about two weeks after this. It must of swelled the lining around my lungs which I am still having trouble with now a month later.

I do think BVT  helps others. I don't want to dissuade anyone from trying it. I have many many friends who are benefiting from it. I am a tough case and am very sensitive to many things so it doesn't shock me this happened.

But I am sad. I studied this for almost a whole year before doing it. I was so ready to get better. I really thought this would be the answer for  me. But what m y body is telling me is I need to be gentle with it. I do wish everyone else who is doing it good luck and I sure hope it helps you!

This was the start of the bad reaction six hours later. It only grew from here around my side onto my stomach. I only took pictures of the beginning of the reaction about six hours in then again at about eight hours, I wish I had gotten pictures throughout the night but I was too sick to move.


This picture is of some of the welts I was getting on my side.


As it started spreading around to my side.


It was the size of a cucumber sticking out of my back.





Thursday, January 21, 2016

And the Journey into Bee Venom Therapy (BVT) Begins...



Starting Bee Venom Therapy

Today my bees arrived! I am nervous and excited and sad. Nervous for the stings, ouch! Excited that I might actually start to feel better. Sad that I have to kill bees in the process.

From my research it shows that bees only live about six weeks and are shipped to us in the end of their life. So it seems like it is their last gift back to nature (not that they have not done enough) to help heal those who are sick and in pain.

This is how my bees came. There are many places to get bees.  You can order them online or you can visit a local apiary center. You can also order the bee home here. 



Ok, so Why am I doing Bee Venom Therapy (BVT)?

Because I have exhausted all other treatments that are in reach for me financially and emotionally.


Western medicine has not helped me. (Not that it won't help others) and supplements, herbs and diet have only taken me so far. I am in incredible pain daily. I have Lyme Disease, possibly EDS, for sure hypermobility issues, severe back pain and have become mostly home bound again. Most of my day is spent in bed. 

I want to be able to play with my granddaughter. I want to go on walks with  my dog. I want to live, not just lay here in bed watching everyone else live. I want to travel to the ocean again. I want to shower daily. I want to not feel extreme pain every time I move. I want to know that I tried everything I can try that is within reach.

I also have friends in the Lyme community that are swearing by BVT and some are even getting back to living, to working, to experiencing life outside the home.  

What I needed to get Started

 Besides the Bee Buddy to keep the bees in, I also have an Epi pen, a bottle of children's dye free Benadryl, 3 pairs of long  handled Tweezers, Alka Seltzer Gold, and am taking 3000 MG of Vit C daily to help my body detox. 

I videotaped letting the bees out of the container they came in. 


Learn More About Bee Venom Therapy Here

1/22/2016
My First Sting

The Test Sting: This is the first sting you do to make sure you are not allergic to bees. You sting yourself and remove the stinger pretty quickly to make sure you won't have an  Anaphylactic  reaction.  I didn't.

I did my first sting today. At first I woke up all gung ho and got one of the bees onto the tweezers. Got the water ready to put the bee out of it's misery quickly ready and bam.. panic attack. I put the bee back in it's home. I felt so bad for the bee and was scared to sting me once I saw it buzzing.

I tried again and bam.. panic attack again.

When my daughter woke up I called her down to help me. At first we couldn't keep the bees on the tweezers.  They kept getting out of the tweezers. It was pretty chaotic for about fifteen minutes while we tried to capture escaped bees and then keep them on the tweezers. But eventually we got one. He woulnd't sting me at first. He even fell off onto my arm and I let him crawl over my arm for awhile hoping he would just sting me on his own. But he didn't. This is by far the hardest part of this for me. That a bee has to die.

My daughter said this in response to someone mentioning we don't have a right to take someone's life,
"That definitely makes it much harder, but if it's about saving a family member, be it your child, mother, or significant other, you would do just about anything. Bees are kind of creatures of servitude. They serve the queen and the hive their whole lives, so I think if anyone can appreciate their life serving another's, it's a bee. I'm a vegetarian and avoid ants on the sidewalk, but I will happily sacrifice some bees on their last limb of life to help my mom. And we will be thankful and appreciative of their sacrifice. We may need to get a hive of our own if we buy a house, right Mom? It might be a good way to give back to the bees!"
Also I had to remind myself that bees only live about six weeks and by the time they send them to us, they are already at the end of their little lives.  But yes, I do feel terrible about it.

So anyways, we finally got one that didn't get away and it stung me. We stung me on the back.


How Did it Feel?

Not as bad as I thought it would. There was about a five second period where I was like, "Ouch, Ouch, Ouch, then it faded and I was numb. I don't know if it naturally numbs you but I couldn't even feel it when my daughter pulled out the stinger. If you look closely you can see part of the stinger next to the bite.


This is the protocol that I am using. I am not endorsing any treatment, giving out medical advice, or saying that any treatment will work or not work for anyone. I am just blogging about my journey trying to heal from Lyme disease.  We must all remember to educate  ourselves, talk to our physicians or naturopaths before trying anything. 

The Next Day

Swollen and itchy which is the normal immune response.





Recommended Bee Venom Protocol for Lyme Patients

(Posted with permission from Nancy Dolan Creek from Healing Lyme with Bee Venom)
Bee Venom Therapy (BVT) is used for many conditions including Lyme Disease. Bee venom has been found to kill the Lyme spirochete in labs (ref: Rocky Mountain Laboratories Microscopy Branch).
Our protocol includes BVT three times a week (every other day, with a 2 day break; an example could be: Monday, Wednesday, and Friday, taking the weekend off to detox, rest, and relax). Along with BVT it is important to follow a regimen of detoxing which includes Epsom salt baths, drinking plenty of water and apple cider vinegar.
People with Lyme Disease undergoing BVT experience side effects due to the toxins given off by the pathogens as they die. This phenomenon is known as the Jarisch-Herxheimer Reaction and is also known as herx or herxing. Herxing is believed to occur when pathogens are destroyed and release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a a cascade of sudden and exaggerated inflammatory responses.
The most common symptoms of herxing reported include increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia, dizziness, sleep disturbances, muscle cramps, night sweats, hypertension, hypotension, headaches and swollen glands. Some experience heavy perspiration, metallic taste in mouth, chills, nausea, bloating, constipation or diarrhea, low grade fever, heart palpitations, tachycardia, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritus, bone pain, flu-like syndrome, and conjunctivitis.
Recommendations:
Minimize exposure to toxins, including airborne chemicals and pollutants, food containing additives or other chemicals, unnecessary medications, poor water, etc. Maximize the quality of food, water, and air. Rest as needed. Remember that symptoms, though unpleasant, are rarely life threatening and will diminish with time.
CAUTION: A beta blocker will prevent an Epi-Pen from working if you have a true allergic reaction (anaphylaxis). Therefore, you will not be able to start BVT until you are no longer on a beta blocker. Also please note: Do NOT use alcohol to clean your skin before stings and DO NOT DRINK ALCOHOL within 24 hours before or after stinging. Also, DO NOT STING yourself ON an EMPTY STOMACH.
Note: BVT is contraindicated during pregnancy and while breastfeeding.
During the first month or two of BVT, some people experience itching. This can be controlled with an anti-itch cream, ice, or Benadryl (alcohol and dye-free). Do not use hydrocortisone creams, this can react with the venom and cause burns and additional swelling. The itching is normal and will subside.
Absolutely Necessary
You MUST obtain an Epi-Pen before starting BVT. Make sure you read the instructions and practice with your epi-trainer. It is also recommended to keep a bottle of Liquid Benadryl (without alcohol and preferably no dye) on hand.
Vitamin C: minimum of 3000 mg per day. It is very important to keep up your vitamin C intake while utilizing BVT. Every day even on non-sting days, take time-release or take 3x a day to give your body a steady supply. If you're not accustomed to taking Vit C you may need to build up before beginning BVT. Magnesium: minimum 300mg a day. A good multi bio align vitamin may be beneficial as well as a very good Probiotic.
Detoxing
1. Organic Apple Cider Vinegar, two tablespoons in large glass of water (add 1 TB raw honey if desired). Apple cider vinegar is very helpful in maintaining alkalinity in the body.
2. Alka Seltzer GOLD, six tabs at once in a glass of water 1 - 3 xs / week. Always listen to your body and do not push it. You will know what you need. Better to go easy than to push. This is not a race. Detox Bath One large bottle of Hydrogen Peroxide with Epsom’s Salts. Sit in the hot bath for at least ten minutes. (Do not take a DETOX BATH on your sting day! It will draw out the bee venom from your system and would be counter-productive.)
Note: if you are unable to bathe get but can get in a sauna or steam room to sweat, place sheets in the freezer, sweat for at least ten minutes, then immediately wrap yourself up in the cold sheets.
Saunas, especially infrared, can be beneficial.
The first couple of months may be challenging. After that it does get easier. It is important to note that BVT encourages the body to heal itself and jump-start your immune system. Some people notice that they end up retracing or rewinding symptoms that they had in childhood or the past. For example, if you have had cold sores, you might develop one while doing BVT. This is normal.
LYME DISEASE PROTOCOL
It is necessary to start slowly and listen to your body. If you try to hurry the process you may cause damage to the liver and kidneys. Lyme spirochetes often infiltrate the kidneys, plus bee venom processes through the kidneys so be kind to your inner organs; you will be thankful you did.
It is best to start one inch to the right and left of the center of the spine. Stay with the spine for a minimum of one month, preferably two, before venturing out to the limbs. The first month or two is not about treating symptoms, but is more about allowing the body to get used to the venom.
If you choose to sting the extremities, do not go straight from stinging the back and jump to the knees or elbows. Instead, slowly make your way down the upper leg or arm, perhaps using mini-stings before
going to the knees or elbows. This is in addition to, not instead of stinging the spine area. Remember that the spine stings will take care of most of your issues,
If the herx becomes too severe, it's ok to stop stinging for a day, detox, then resume stings on your next scheduled session. If however, there is a break between stings of 10 days or more, you will need to do a test sting again and wait, then start again slowing and ramp no more quickly than 2 stings every other session.
Where do you start and how to begin?
We always start one inch to the left and right of the center of the spine, as this is where all the nerve stems come out. The bee venom travels down the nerve and reaches the extremities. The goal is to sting one inch to the right and left of the spine, keeping stings even. You will want to alternate between the upper and lower back, and will eventually sting the entire length of the spine.
Note: Early in BVT it's best to avoid stinging above T3 as this may produce an intense herx.
Always begin with a test sting on your back one inch to the side of the center of the spine. If you are right-handed, do the test sting one inch out from the left side of your spine. If you are left-handed go to the right side of the spine. Remove the stinger immediately, sliding it to the side, along the skin, not pulling it straight up into the air. Wait at least 30 mins to see how you’re feeling.
Pay attention to the throat and tongue. If you’re going to have an allergic reaction you will feel your tongue and throat start to swell shut. If this happens, drink half a bottle of Liquid Benadryl. If you have no relief within 30-45 seconds use the Epi-Pen and get medical attention immediately.
Provided there is no adverse reaction, you can do a second sting. Remember to do this on the other side of the spine for balance. You can leave that stinger in 20 minutes. It is best to place stingers in a tissue when removed to prevent a secondary sting.
Ramping up stings
Skip a day and do 2 more stings. On your next session stay with 2 stings, so you will then have done 2 stings in three consecutive sessions. If you're tolerating the venom well, and herx isn't too intense, stings may then be ramped by 2 every three sessions (2 additional stings per week) till 10 stings per session is reached. This is as quickly as you should ramp and depending on the individual, reaching 10 stings will take one to three months.
40 stings per week is the maximum number you should do.
Again, you want to be on a 3 day a week schedule, every other day and then 2 days off. One example might be: Mon, Wed, and Fri, giving yourself the weekend to relax, detox, and recover.
NOTE: For women, you may want to avoid the area around the bra, if you wear one. In general areas that might rub the sting site, like the belt line or waist could also be avoided.
If a herx becomes extreme it's ok to skip a day to detox. Stings may also be be reduced, but never reduce by more than 2 per session.
BE AWARE: If you have the MTHFR gene mutation, you must ramp up much more slowly.
Remember this is not a race and if you push too fast you may hurt your organs.
You may start to itch, swell, or get red right away or around weeks 2-4. Some people find it helpful to use anti-itch cream, ice, or Benadryl. These reactions are normal and will subside within a month or two.
Things to be aware of while stinging regularly
Over time bee venom returns your body to balance. Some people find it beneficial to include other honeybee products in their diet: honey, pollen, royal jelly and propolis. You may no longer need your meds. If you have gained some weight, you may find yourself dropping that weight. Women may notice that their menses returning to normal.
As you become more comfortable with stinging and feel adventurous, you can sting joints and/or acupuncture points if you choose. Acupuncture charts may be found online and in our files. Also keep in mind that scars block energy. Therefore, it is important to sting any scars you have. You will be amazed that scars disappear when stung by bees. You can sting directly on the scar.
As each person is different, experiences will vary. With so many different strains of Lyme and all its numerous co-infections, you may experience things not listed here. On the other hand, you may not experience things that are listed here. For example, some people experience emotional mood swings or a need to cry about 3-5 months after beginning BVT. It’s a healing effect of the bee venom balancing out your emotions along with your hormones.
Please remember, treating Lyme disease with BVT is a 2-3 year process. After the first year you may experience a return of symptoms. They will be short-lived.
Please feel free to share your knowledge and experiences with us. Feel free to pass this protocol on to your BVT practitioner or anyone you think it may help.
Nothing contained in this document is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.

Saturday, January 9, 2016

Using a Biomat for Lyme Disease, Connective TIssue DIsorder and Back Pain


Hey everyone, in case you haven't read my blog before, I have been diagnosed with Lyme Disease, connective tissue issues, hypermobility issues and have chronic back pain. 
Pain meds make me just feel sick or like a zombie and give me high anxiety. So I have been looking at alternative treatment to try to help ease the back pain I have. I have also tried acupuncture, chiropractors and massage. All without much luck. Acupuncture helped but very temporarily and I think it is great for those who can afford it or are able to drive and get to weekly sessions but for me that was unrealistic. So i have looking for "at home" solutions.
This week I got a Biomat.
Biomats are said to put out infrared light which help ease inflammation, and said to help you detox. They are also lined with amethyst which has it's own healing properties. They are expensive so I'm praying this helps me. I will blog about it as time goes by so others can see watch my journey to possibly help their own.
To learn more about Lyme and Biomats VIsit: Biomats and Lyme Disease
My dog, Oliver cuddling with me while I use the Biomat.
I am sometimes impatient and really read the instruction as I was using it for the first time. Make sure you read them first. :)

Make sure you  drink a glass or water before and after. I  didn’t do that and stayed on it for a couple hours as it felt so good on my back, instead of starting with the half hour they suggest to see how you react. When I woke up the next morning I had some swelling in my face and felt really dizzy. 
After the first night I followed the instructions and did much better. By the fourth day I woke up and pain was decreased by I’d say 50%. Not sure if its a coincidence yet of if it was due to the Biomat. But it is definitely comforting and helps you relax. It is definitively relaxing and I love using it right before I go to bed and now that I'm getting used to it will increase the time I use it.
 I'll update as time goes by. 
For more Info on Biomats:

Thursday, September 17, 2015

Trying to Get Answers for my Back Pain

For the last year I have had chronic back pain. Really for the last two years. For the last twenty years since getting Lyme, I have thrown out my back and neck about once a year. Something changed the last two years. It was always my lower back I threw out but this time, it was my upper back.

About two years ago, I bent down to pick up my dog Oliver. I felt a sharp tear like feeling in my upper right back. I stood up quickly and thought for a second it would fade. But as the minutes went on it grew worse and sharper. I had to lay down. I took ibuprofen right away and tried to just lay still.

I really hate pain meds and I knew going to the ER, would bring them giving me pain meds.  I don't like how they make me feel. I can't stand that feeling of being so out of it and not being in control of your own body. The more they give me the more anxiety I get.

After three days of laying in bed it got really bad. I mean I couldn't barely move. I was in my bedroom upstairs and tried to get up to go to the bathroom. It felt like someone stabbed me in the upper back with a knife, like right under my shoulder blade. I made it to the stairs and collapsed. My boyfriend, Paul had to call 911. I couldn't move without  horrible spasms.

As soon as I got there they gave me ativan and some other type of non narcotic pain med. Maybe Toridal, I dont remember. But it helped a lot. I was actually able to walk out of there on my own a couple hours later. No xrays or MRI was done.

I never could completely recover though. Each day as soon as I got up, to be able to function I'd have to take ibuprofen, every four hours on a the dot. I did this for several months.

Then in August we planned on taking our annual "out east" trip so Paul could visit his family and I could visit my Lyme friends. We divided the trip up into two days but that still meant being in the car for at least 8 or 9 hour each day. My sciatic was screaming but it seemed like my upper back was going to be ok.

On our trip we took several trips to the beaches and other site seeing and family meeting ventures, including meeting up with a bunch of Lyme friends for a picnic at a waterfall. I was in pain but as long as I took my ibuprofen I could fight through it.

Then while at my friends house, I fell down cement steps leading to a pool. Ouch I had bruises on my back, side of my leg and even on the bottom of both feet.Weird right? But it didn't seem like anything "new" happened. I still went on to have my normal daily pain that ibuprofen would take of.

But on the drive home... even though I was laying down in the back of the car the whole way trying to nurse my sciatic nerve something happened. I felt ok when we stopped at the hotel to rest for the night. But the next morning  I woke up and knew I was in trouble. I had this pinching sharp pain in the same spot as when I picked up my dog months earlier and something pulled in my back. It was the same pain in the same place, only nothing had happened. I didnt bend over or anything new. We packed up, got in the car and I made about three hours from home and we had to stop an ER in Chicago. It was spasming so badly. Right before we stopped at the ER I had taken a Flexorol that the ER had prescribed me the last time I had thrown out my back but it made me have a bad reaction. My face started getting a weird hot flushing feeling like all the blood was running to my head. I couldn't stop shaking, it was so scary. I hate pain meds, they never make me feel right.

So at the ER the dr prescribed me valium but I didnt take any. I just sucked it up, and finally made it home. I thought maybe a couple days of rest would help. It just kept getting worse. At the time I was babysitting daily for my granddaughter, a couple hours a day and my boyfriend had to do all the lifting. If I tried to hold my granddaughter, who is my life by the way.. I would get instant spasms. Id don't know if my back pain is caused by Lyme or not, but man, everything just gets taken away that you love. It's like you are alive but you can't live. You can be a grandma but you can't be a grandma.

I started calling the dr and making appointments. But each time the suggestions are either steroid shots. which I have learned are unsafe with Lyme disease. So she requested I go to massage and chiropractor.

Massage did nothing for me, but it hurt. The chiropractor was so nice and sure that using a Sigma instrument would help. It's supposed to be the gentlest way to adjust your back. But man, the first time I went, I had severe nerve pain shoot down my leg into  my foot. Each time I stood on up the pain would shoot down. He wanted me to go back the next day too for three days in a row. It was all too much. I ended up doing the Sigma for three months, I think but I always just would end up in more pain then when I went in,. It would feel ok for about an hour but then inflammation or something sets in and I would have horrible pain up and down my spine, from top to bottom. Nerve pain going down my spine and branching out to my shoulders, back, down my butt, down my legs, it was terrible. 

Two news problems developed. Chronic lower back pain and this electrical shooting sensation that goes from my neck through my chest. Now everyday was my upper back still hurting but now my lower back and leg pain started. And I would get this random feeling like someone took hot oil and splattered it on me. It's like pins and needles.. with a hot or cold sensation that goes through out my neck, top of my back and through to my chest. Six months later I still get it a couple times a week. So I stopped going to the Chiropractor.

I had heard about a gene mutation that leads to a condition called, EDS or Ehlers Danlos Syndrome. Part of the symptoms were inability to heal from injuries, not being able to get numb from novacaine, chronic pain and dislocations. I asked my dr to refer  me to a specialist and she did. But he wasn't so sure... what I had. He wrote a letter to my doctor asking her to treat me as if I have EDS Type 2, but he did not firmly diagnose me with it. He said I had some signs of it but not all. He said I was not hyper mobile enough. And of course there are not blood tests to confirm either way.Another unanswered question. Do I have EDS too?

Shortly after the EDS dr visit, I was sitting at home playing with my granddaughter. I already was very careful of how I lifted her if at all. I found if I could slide her up onto my lap when I'm sitting in a chair it is usually ok. I was outside and did this and felt a pop in my shoulder. I had sublexed my shoulder.  I went to the ER and that dr told me I was just having muscle spasms.. no xrays, no catscan, no MRIs. Just told me Im having muscle spasms and gave me steroids.. yelled at me for moaning when my shoulder "spasmed" and was confused to why I would think I still have Lyme disease when  have already treated for it.

After my shoulder didn't get better I was sent by my regular dr to physical therapy where I went for a couple months working on my shoulder. The PT was very nice and said she had other EDS patients and knew that Lyme was not easy to treat and caused lingering problems. She said EDS and Lyme actually cause the same kind of damage to joints and ligaments. What I gathered from her as we talked is that the reason the chiro adjustments won't hold is because my ligaments are messed up. The chiro can put my joints back in place but without strong  ligaments to hold them they will keep sublexing or coming out of socket or place. It's been months now and my shoulder is still not back in the right place.

Sleeping is a nightmare. My back, neck, legs, shoulder all hurt. It's impossible to get comfortable. So the EDS Dr had referred me to a Rheumatologist. He told me to "Look at him, I don't have Lyme disease, so get it out of  my mind." He said even people who have Post Lyme Syndrome don't have symptoms after a year. He diagnosed me with fibromyalgia, hypermobility and spinal degeneration. So he DID think I was hyper mobile. How can every doctor have a different opinion and diagnosis? Either way he said he would call me in a week and we would come up with a plan to deal with my "Fibromyalgia." He never called. He just sent me a letter saying all xrays he ordered and all blood tests were normal. That was the last I heard from him.

A couple months ago I got up early in the morning.. and sneezed. I couldn't move. I was frozen in pain. I finally made it to my bed and took a valium, as much as I hate pain pills. I laid in bed for three days taking valium to deal with the pain. Just as I was getting able to start to walk again, something popped in my back as I lay there. Like this horrible spasming sharp pain. Again I could not move and Paul had to call 911 to come get me.

After a year of me asking my dr to order and MRI.. the ER doctor finally did. He told me he was probably going to send me to Madison to a back specialist but we'd wait on the results of my MRI. But after the MRI came back he came in and told me everything was normal, it was just back spasms and he gave me some ativan and sent me home.

Later when I got online this was my report. Is this normal?

Lower Back MRI

Comments from the Doctor's Office Mild multilevel spondylosis mild sliding forward of vertabra . Scattered regions of small disc herniation. Lots of arthritis. No significant central canal (spinal stenosis) or neural foraminal narrowing (pinched nerves).
Narrative MRI LUMBAR WO CONTRAST, 8/31/2015 12:11 PM, Southwest Health Center
INDICATION: 724.2: Lumbago
ADDITIONAL CLINICAL INFORMATION: Ordering Provider Reason for Exam: Technologist Note: concern for acute herniated disc vs epidural hematoma (history of Ehlers Danlos syndrome). Mid to low back pain. Bilateral leg numbness and weakness. Difficulty ambulating. No prev back surgery Additional: None
COMPARISON: None available at the time of dictation.
TECHNIQUE: MRI of the lumbar spine was performed utilizing multiple pulse sequences in multiple planes without contrast.
FINDINGS: There is normal lumbar lordosis. There is trace retrolisthesis of L4 on L5. Vertebral bodies are normal in height and morphology. No suspicious marrow signal changes are seen.
There is disc desiccation throughout the lumbar spine.
The conus medullaris is at the T12-L1 level and is normal in signal and morphology. There is no evidence for epidural hematoma or fluid collection.
Level by level assessment: At L1-2 there is mild disc bulge and facet hypertrophy. There is no central canal or neural foraminal narrowing.
At L2-3 there is no significant disc bulge. There is mild facet hypertrophy. There is no central canal or neural foraminal narrowing.
At L3-4 there is disc bulge and small central disc herniation protrusion type. There is small annular tear. There is mild facet hypertrophy. There is no central canal or neural foraminal narrowing.
L4-5 there is disc bulge with superimposed central disc herniation with small extrusion component. There is bilateral facet hypertrophy and infolding of ligamentum flavum. There is mild lateral recess narrowing. There is no central canal or neural foraminal narrowing.
At L5-S1 there is disc bulge with superimposed small central disc herniation with small extrusion component. Disc minimally impinges on traversing S1 nerves bilaterally right side greater than left. There is no central canal or neural foraminal narrowing.
Impression IMPRESSION: No evidence for epidural hemorrhage or fluid collection.
Mild multilevel spondylosis. Scattered regions of disc herniation. No significant central canal or neural foraminal narrowing.
Mild lateral recess narrowing at L4-5 at L5-S1.
Reading Radiologist - Dolin, Ronald Releasing Radiologist - Dolin, Ronald Dictation Date Time - 08/31/2015 13:09 Transcriptionist - NA
Component Results

Later my doctor ordered an upper back MRI which was pretty normal which shocked me as this is where most of my pain had been over the last year.

Upper Back MRI


MRI upper spine negative, did put in referral to neurology.

Narrative

MRI THORACIC SPINE WO CONTRAST, 9/9/2015 12:29 PM, Southwest Health Center

INDICATION:
724.1: Pain in thoracic spine
729.89: Other musculoskeletal symptoms referable to limbs(729.89)

ADDITIONAL CLINICAL INFORMATION:
Ordering Provider Reason for Exam:
Technologist Note: Chronic mid back pain
Additional: None

COMPARISON:
None available at the time of dictation.

TECHNIQUE:
MRI of the thoracic spine was performed utilizing multiple pulse sequences in
multiple planes without gadolinium.

IV CONTRAST:
None

FINDINGS:
The spine is normal in alignment without antero or retrolisthesis. No loss of
vertebral body height. Multilevel disc desiccation with minor disc space
narrowing is seen especially through the midthoracic spine.

Segmental analysis shows no evidence of disc bulge, protrusion, spinal canal
or neural foramen stenosis with the exception of T7-8 where there is minimal
osteophyte ridge seen. Still no spinal canal or neural foramen stenosis.
Thoracic cord signal is normal. The marrow signal is normal on STIR images
showing no evidence of marrow edema. No fluid signal within the disc spaces.
Pre and paravertebral soft tissues appear unremarkable.

Impression

IMPRESSION:
Minor multilevel degenerative disc changes of the thoracic spine, otherwise
normal exam.

She referred me to a neurologist now. I can't believe in over a year in back pain noone has referred me to a back specialist but what can I do? So I am going to try Bee Venom Therapy.

Treatments I am Trying

Biomat

Bee Venom Therapy