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: