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.

Click Here to get back to original post and the Bee Venom Therapy Protocol. 

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.

Week 1

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.

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.

One Week In:

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:

Biomats and Lyme Disease

Compare Biomat Prices 

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

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

On Feeling Isolated

I have noticed since getting sick, that I tend to isolate myself. Not online obviously but in real life. I could just stay in my apartment and never leave. When I do go out, because I do like nature, I go find trails or water and sit by myself. I tend to prefer being alone then to be with other people. Or if I go with someone else, it will be my "comfort people" to my "comfort locations." Comfort people are people who are around me a lot and understand my symptom wierdness cuz of Lyme.

Going somewhere new, or meeting new people gives me severe anxiety.

I think that Lyme made me this way because I used to be very social. Now it is hard to shower, to do my hair, forget makeup. Talking and conversation bring about neuro symptoms, like ear ringing, head pressure, neck pressure, and just trying to keep up with a conversation is hard since my attention span is zilch.

I need quiet. Sound annoys me. I used to love music, now I can't handle it. A quiet tv on in the background playing some calm show is ok as it covers up the Tinnitis. But anything loud music or screaming or any loudness, I can't handle it and get panic attacks.

What scares me is I don't mind it. I have learned to like being alone. It is easier for me. No overstimulation, no loud noise, I can control lights and smells. If I feel weird I can lay down quickly. I can be in comfy cloths and wear yoga pants all day with no judgement. It's easier to be sick alone for me. I can shake and tremor and cry and swear, and hide under my blankets. No judgement from anyone else, no putting pressure on anyone else to understand. Just me and my sickness all alone.

Anyone else feel this way? Why would a disease make you want to be isolated?

I have noticed not all lymies are like this. I have noticed a big scale, from " completely liking being alone" to "needy as hell." So I know we are all different. But I just wanted to start this conversation to hear how others feel.

Feeling Doomed and Failed by the Medical Community

I want to vent a little. Sometimes when Im reading other posts in my support group, or talking to someone, they will tell me the things they have been diagnosed with. And then they tell me the tests their doctor ordered to figure it out. I have gone to over 100 doctors in several different states. Not one has ever done anything more then an MRI.. and now with my back problems I cant even get that. Is it because im on Medicaire or Medicaid?

I dont understand why my doctors just keep ignoring me as my issues grow? Its like they just label me with panic attacks and move on. Even when i went for over 15 years for my right arm going numb, noone would do anything other then tell me I was hyperventilating.

Eventually after 15 years a neurologist ordered and EMG test which showed nerve damage from my neck down to my right hand which is stemming from pinched nerves because of three bulging disks in my neck. And still even after that test, no dr even followed up on the bulging disks or on a cyst on my thyroid that was reported on on the MRI. They didnt even tell me, I only know cuz I got copies of the tests. When I asked the dr if I should be worried about the cyst on my thyroid she commented, "it depends." then turned around and started typing on her computer. How are they so cocky? "It depends" is not an answer!!

I have changed doctors again and again but have NEVER found one that will do anything outisde a basic xray or basic blood test. Im getting back to bedbound. What do you all do to get your doctors to perform tests? How do you get them to send you to specialists? It seems like mine just want to get me out of the office and then do nothing further. I feel like Lyme is just going to turn into ALS and that will be the way that I'll die. Because all I can do is lay here. Waiting to die.

So much for Back to Living

So much for Back to Living
    
                             More Like, Dawn of the Dead....

That's how I feel anyways. I feel like the universe laughed at me when I actually thought I might get back to living. I mean, I am alive. There are good things in my days, my beautiful granddaughter, my kids, Paul, my pets, the Lyme and EDS community which I love to pieces.

But damn, everything hurts.

Part of me wonders if it's my punishment for not retiring from activism all the way like I had planned. I have a hard time just dropping out of the community, it's been my family for many years. I have found a good balance. I'm not planning or coordinating protests anymore or anyting like that. Mostly I work on my website everyday and help Lyme friends where I am able on Facebook. I am working with my friend Karen Smith from Australia on International projects. None of this stuff is stressful though. I let go of all the stressful stuff.

I thought that letting go of the negative would allow more positive in.

Instead what I have found is pain, lots and lots of pain and anxiety and I'm not sure why? Is it just nature? Is it just that this is how life is? Am I doing something spiritually wrong to cause this? Was I a serial killer in my last life?

What can I do to change this?

My Issues:
It seems like I can't heal anymore. Last year I was doing pretty damn good. I mean I was still sick of course, but I had come to a baseline feeling of sickness that I could handle and still function with. I was more on an even keel. I could travel a bit and run to Walmart if I wanted.

This year is different. And the timing sucks, because I have a little grand daughter that I want to cuddle and hold and play with. I have a boyfriend and family I want to do things with, travel with. I have friends around the world I want to meet, face to face.

While I have been trying to treat or deal with Lyme for so long, I had let other things go. My dental health, some gynecological issues that I was having. I just concentrated on the Lyme stuff and these other matters were put on hold until I could mentally, emotionally and financially deal with them. So when 2014 rolled around, I made it my goal to fix these issues. I knew I had to deal with them no matter how scared I was to do it.

Enter the "Not Being Able To Heal" Ordeal.

One of the many  stitches pulled out of me.

Biopsies

1. Gyn Issues: Yep, I know...yuck. Right? I was having issues with bleeding and pain and just a bunch of "unpleasant" symptoms.

I had been having pain in my lower abdomen. I kinda chalked it up to, "eh, it's either Lyme inflaming things, an ovarian cyst or divertulitis flaring. I ignored the pain and made the mistake of not going to a doctor.

Well one day while walking home from my daugher's house, I felt a gush of something wet come out of me. I got home and saw blood and mucus and yuck, just grossness. What the heck was this? Paul drove me to the ER. After making me wait an hour in the waiting room, and then another hour in the examining room the doctor finally came in and bombarded me with a bunch of really nasty questions that I won't even repeat. After examining me he apologized and said he was sorry for what I was going through and that I would need emergency surgery. So they moved me to a room in the hospital to wait for the surgeon.

More biopsies

More Stitches

 Paul went home. I sat and waited and waited and no surgeon showed up that night. They put me on IV antibiotics. The next morning a surgeon showed up and did a very painful exam. He just said my body will probably just take care of it from here. He said it's too messy up there to even see where the absess was that broke.  So at least now I know it was an absess that broke. He referred me to someone else for follow up.

That doctor just dismissed me too as did others, I still had pain and discharge and knew something wasn't right so I kept finding doctors. Finally I landed one who took it seriously. She did a full exam of my cervix and said, OMG you have stitches up there!

Turns out, my body had rejected "absorbable" stitches that were put in me five years ago during a hysterectomy. Just like how your body tries to push out a splinter in your finger, my body was trying to push out the stitches through my vaginal cusp.

Now every two or three weeks I get to go to the gynecologist, get the stitches pulled out, get biopsies around the site done and get cauterized with silver nitrate. I have what is called granulomas that they have cut off, and granulation tissue that they use the silver nitrate on. I have had at least 6 appointments now and still have more to go. There is no knowing how many stitches are up there and how many will need to be pulled out.

This is incredible personal and a bit embarrassing but I'm posting about it anyways in case anyone else might have this issue. It may help them realize what's wrong.

2. Dental Issues: I got sick back in 1991. Since then I have lost about a tooth a year to Lyme. They just break in half or cavitate from the inside out and need to be pulled. Unfortunately as time went on, I started having bad reactions to Novacaine with Epi in it. My heart would race, I'd feel like I was jumping out of my skin and my body would start shaking. I would feel like I was going to pass out.

So my new dentist has been trying to use Carbocaine and some other stuff, but nothing seems to numb me all the way or for long enough.

When a pulp cap that I had done failed, I decided I did not want to get a root canal done. I opted for just an extraction. Unfortunately after a half hour of trying to pull the tooth, my dentist realized I was not going to get numb enough. I can tell she was frustrated and blamed me for it, and my anxiety.
Whatever, I don't even care. I'm so used to doctors not believing anything I say I don't think it can even affect me anymore. I am numb to ignorance and judgement by doctors.

 I have about 12 teeth left in my head. I had ten cavities. The first three that I got filled, well let's just say, it hurt. I can't seem to get numb enough and can feel that drill. Sometimes I tell the dentist and she gives me more, and sometimes I just sucked it up.

She referred me to an oral surgeon. I asked that two teeth be pulled since they were both pretty bad. It really sucks because now I have only two molars, on opposite sides. I have to chew with my front teeth. But anways, I was really nervous to go under anethesia as it always makes me sick. But it actually went very smoothly. I wasn't even very sick when I woke up. Usually anethesia makes me throw up for days. But I was ok, thank God it was done.

Now it's been two weeks since that extraction. I now have a bone sticking out. I don't think it's a shard that will come out on it's own, I think its part of shattered root or jawbone because this one won't move. I called the office and they said I should come in but I'm scared because how are they going to remove it? I can't get numb, and it would be silly to give me anethesia to file down a bone. Am I going to have to just suck up the pain again? Grrrr.. why couldn't it have just worked the first time, why do I have to constantly go back for failed procedures? Why can't I just get numb?

I have researched this question again and again. What I have found out is there are some people who can't get numb:
1. Redheads have an issue getting numb.
2. Anxoius patients have a problem getting numb.
3. People with EDS have a problem getting numb.

I struck out 3 times. No wonder.

So anyways, as with the stitches, I still have 5 teeth to go. I am leaning  towards just letting my teeth go. Just letting them get bad enough so that I can just get them all pulled and get dentures and be done with it. I don't want to go through anymore dental torture to save the next 5 teeth, knowing it will cost thousands of dollars and may not work just like the prior ones didn't. It's a waste of money and I certainly don't have money and it's just adding to my anxiety. These monthy dentist appointments were just painful and expensive and in the end, I ended up losing two of the ten teeth already, with 5 more to go.

3. Back Pain- This is the worst most debilitating thing I have gone through besides my stroke. This has me basically immobilized. About once or twice a week I will feel ok enough to go to my daugter's house or to run to Walmart with Paul. But I certainly cannot drive again. I can barely be upright for more then 15 minutes or so and I have to lay in a certain position most of the day.

I have had back issues for years, since I first got Lyme. I would bend and throw out my lower back. I'd be laid up for a couple days to a week and be back on my feet. But this is different. This started with pain in my upper back. It is now around my rib cages and my whole back. I almost feel like there are little pins pricking me around my ribs. I don't know if it's connective tissues, muscles or nerves. I just know it hurts, all the time, 24 hours a day. I wake up crying, and I can't hardly hold Raya, my granddaughter. I can sit her on my lap but Paul has to be near me always otherwise one wrong move and boom, I get that sharp pain and I'm down for days again.

As usual, doctors aren't being much help. So I am trying to figure things out on my own.
1. I bought a TENS machine
2. I am trying Power Strips Patches that are made of  elemental germanium, and the inner layer consists of a proprietary blend of fermented Korean red ginseng, Alpha3 CMP™ marine phytoplankton, and a petroleum-free, water-soluble adhesive for safe, continuous daily use. (All natural stuff since I can't take pain killers or muscle relaxers)
3. I am trying accupuncture.
4. I am doing massage.
5. I want to find someone who does myofascial release but haven't yet.
6. Started an anti inflammatory diet.

Usually when I throw my back out it last a couple days.. this has lingered on now for four months straight with no relief.

Xrays showed that I have mild scoliosis and arthritis due to an injury I had in the past. (I'm not sure what injury that was, but that is what my doctor's nurse told me.)

Nothing suggests why my upper back hurts so badly. No MRIs or Catscans have been ordered. I do have an appointment with and EDS doctor in Madison, Wi in March. Yes the doctors for EDS are rare and there's long waiting lists, just like with Lyme. But I urge all Lymies to look into EDS too. Ehlers–Danlos syndrome has a lot of the same symptoms as Lyme. It is believed to be a gene mutation that causes a connective tissue disorder. The more I research it, the more I believe that EDS and other gene mutations may be the reason some of us with Lyme cannot get better.

The mutation causes us not to be able to produce proper collagen. Without that, it is hard to heal normally from any injury or inflammatory disease. So you put these two together and bam... chronic illness. EDS would explain all three of my conditions above and why I can't seem to heal from them.

Click Here if you want to look more into EDS.

Raya taking care of me when I'm sick. <3

Paul has stepped up to the challenge of being "Grandpa" really graciously. Since I can't hold Raya she plays next to me on the bed and Grampy holds her when she gets tired or wants to be held.

So anyways, that is where life stands right now. I have my curses and I have my blessings. Like all of us. <3 I hope that those reading this, have blessings that still outweigh the curses. I do and so I continue to fight on towards better health. I just hope our community can catch a break soon. Hoping that there are some breakthroughs soon. Seeing the article, Study: New Test For Finding Drugs To Fight Persistent Lyme Disease gave me some hope. Knowing that there are organizations out there donating and generating research is a good thing.

My friend Chris posted this today and I'm trying to hold onto this thought: