Deadly Venom or Saving Grace- Is Bee Venom Therapy the Answer to Lyme Prayers?

 

20160714_131829I worked for kids. I was a vibrant Kindergarten teacher for 16 years. I loved creating my own puppets and lessons, and I had a loyal following every year! My students and colleagues loved a puppet that I created out of a wooden fork from the dollar store. I used him daily to teach sight words, and on Fridays, I’d invite the whole Kindergarten and special education classes to my classroom for a “show”. It was funny and silly and sometimes off the cuff, but none-the-less, it was a great way for my little scholars to learn abstract words like ‘here’ and ‘will’. They loved these lessons, and I would try to improve on my lessons each week with various props, songs, and little stickers to give to the children. Even the adults would get into the act. One of the paraprofessionals gave me different seasonal-themed bow ties to put on my puppet friend, which I still have and use each year. My principal wanted to create a theme song for him. And I loved every minute of it.

Now, I work for Lyme. I took a leave of absence from my teaching job this past January, becoming my own Lyme doctor, working towards better health. I read books and articles written about Lyme by doctors, researchers, and victims. I search blogs and websites, trying to find any new information that can assist me. I cross-check any healing therapy that seems to be too easy or too good to be true with a friend who has been a Lyme warrior for many, many years. I create my own recipes because my system is so fragile and can’t digest even the smallest amount of carbohydrates without feeling like I’ve gotten stung by bees. I limit going out to eat since I don’t have access to the foods I can eat or the 40 oz. or more of liquid I need to drink. I record and track my food, water and supplement intake each day, as well as check my blood sugar to ward off diabetes. I listen to advice from all sorts of people who are either suffering themselves or know of Lyme victims and have information to share.

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I have numerous appointments with my primary doctor, naturopaths, and up until recently, my dietician. I am always on the look out for other avenues to help me, obscure or ‘out there’ as they may be. Lyme is a smart body terrorist, so I need to be smarter to beat it. It morphs and changes and knows when you are on antibiotics, hiding in your joints and muscles, waiting for you to show your weakness so it can attack with pain, fatigue, and loss of concentration and focus. It causes multiple levels of damage to your body and brain. Everyone’s chemistry is different, so everyone’s reaction to Lyme also differs. I have to work to be sure that I keep my stamina up and reactions under control while fighting Lyme every day.

20160606_111639_resizedI write about my experiences as a therapy but also as a way to help others. I ‘post’ and ‘follow’ on Twitter, Facebook, and WordPress. I seek out ways to help the Lyme community by sharing my own experiences to educate and inform those who are misinformed, misdiagnosed, or both.

Working for Lyme has led me down very different paths to wellness. My most recent experience has informed me about Ellie Lobel and Bee Venom therapy (BVT), which is pretty ironic, considering that is how I describe how I feel when anyone asks what my inflammation feels like! She was a scientist before being bit by a tick when she was 27. A chronic Lyme sufferer for 15 years, she was in complete organ failure and was on the road to her death. She had moved out to California, and had unexpectedly been stung repeatedly by a swarm of bees, which turned her whole immune system around. You can read more about her story here:

http://mosaicscience.com/story/how-bee-sting-saved-my-life-poison-medicine

She now travels around the country, educating people on using bee venom from live bees to combat Lyme disease.

This seems like a ‘too good to be true’ type of solution, and yet, if it worked for Ellie after 15 years of living with the ravages of Lyme disease, could it work for me? And what would my results be after having only been dealing with Lyme for almost a year versus her 15 years? Would my results be quicker, or would I have an adverse reaction to the venom?

According to Ellie, you need to start a detox process prior to starting actual stinging, which outlines on her Facebook page. Additionally, you need to have an EPI pen and Benadryl available at each stinging session, just in case. Her method is very controlled and specific, which is in an effort to both kill the Lyme as well as limit the herxing reaction that will come afterwards as the venom works its way into your system. If you are unsure how you will react to the bee stings, you do a test sting first. After the initial test sting, you add one more, and then you increase the stinging by two’s, slowly adding two additional bee stings over time, so you are up to ten stings in one sitting. OUCH! Depending on your herx, you may stay at only two stings for several weeks. You only add more stings as you feel you are ready. And you continue to use your detox protocol in addition to the stinging routine. Since this is a controlled method for killing bacteria, you sting 3x a week, which allows you the weekend to also detox and recoup. Stinging is also very specific on your body: one inch on each side of your spinal column, spaced out up and down, to allow the venom to travel through the nerves to your extremities.

Many people across the country and the globe have experienced success with BVT for centuries, and for a variety of illnesses. And yet, I am torn with trying this method, because I know that with every plus, there is a minus. On the one wing, if I can contract an illness by an insect, why can’t I utilize another insect’s natural body chemistry to combat it? Makes sense, right? But then I on the other wing: what if BVT doesn’t work for me? I want to know about any anomalies in BVT and Lyme disease before I get involved with the whole process. With my luck, I’d be the one person who doesn’t take well to BVT and have an adverse reaction that won’t let me live to tell about it.

I am still working for Lyme, and I have found that my work with my diet and whole food supplements have started to change my immune system. I have more energy, my brain fog is slowly lifting, and my nails are no longer thin and brittle. Perhaps a little more work with the bee venom will set my immune system completely straight. Or perhaps it’ll set me back another six months! I still want to research it a bit more before I buzz into the BVT hive.

Have you utilized BVT to treat a chronic illness? What have you experienced?

Yours in Lyme Adventures,

TWL

 

 

 

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Unconventional Treatments Challenge Your Medical Care And Thought Processes

 

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I grew the second eldest of five children in a middle class home. I wasn’t a sickly child, and my parents made sure I ate right and went to the doctor’s when I needed to for appointments, or if I became ill.

As a teenager, I got a job working in a health food store. I wasn’t really a big health food nut, but I liked the atmosphere of the store, my boss and the people that worked there were wonderful to me, and I did purchase some of the products. I loved the Martinelli’s apple juice, it’s golden nectar housed in glass apple-shaped bottles. I’d purchase Xylitol gum, carob coated goodies, or nuts to chomp on. Some of the product names like Kiss My face and Nature’s Way enticed me , but I never really purchased personal products. There were many regular costumers who would buy all sorts of vitamins and organic food products at that store, and the owner and many of the employees had specific expertise well beyond my sixteen years.

The worst medical issue I ran into as an adult was developing gestational diabetes with the pregnancy of my daughter, and even that was managed with insulin and then pills afterwards.

This past December, however, my life and health took a spiral downward when I developed severe joint and muscle pain and was treated for Lyme for one month with Doxycycline.

I initiated numerous doctors’ visits with specialized doctors–a rheumatologist, a neurologist, and two infectious disease doctors–because I wasn’t happy with the minimal level of my improvement with each passing week. Each doctor gave me a different diagnosis ranging from “It’s Fibromyalgia. Take this Lyrica.” to “You just have to wait and see.” to “We don’t know what is causing your symptoms. Just eat right and exercise.” My insurance was paying for these vague or totally off-base diagnoses. Frustrated, I’d basically hit a plateau, and I wasn’t back to normal. I was out of work, tired, and in pain. And yet no one in the mainstream medical community seemed to really want to help me. If their hands were tied, they weren’t telling me. I was left scratching my head and searching for answers elsewhere.images

In March, I’d found a naturopath and a dietician who really assisted me more than the prescribed antibiotic treatment, and yet, I was still experiencing fatigue and pain that was directly influenced by what I consumed. It wasn’t enough for me to just have some good days and some bad days. Prior to this happening, I had a strong teaching career with an active family life. All that changed with Lyme, and I was merely a shell of who I used to be within a matter of weeks. I wanted to get back to my normal, active self. And yet, even with the supportive help of my naturopath and dietician,it seemed like such a far reach to get there.

In my graduate school days, we learned about synchronicities in life. The idea that ‘things happen for a reason’ and the experiences you have that seem like coincidence all lead you down a path that you may never have expected or planned. Call it fate, God Winks, signs, whatever. I’ve experienced many of these synchronicities since my Lyme adventure began in December, leading me to new ways of thinking about my health and medical care.

My most recent new learning has come from a place called Holistic Wellness Alternatives in Yorktown Heights, New York.

I was led to this place by my husband and a chance conversation with a recent acquaintance.  He was speaking this man about my recent issues with Lyme. This man in turn shared about his friend’s success as a client of Holistic Wellness. This particular cancer survivor experienced wonderful results from Dan Court, the owner and practitioner, so I called and made an appointment.

After speaking with the client liaison who had been misdiagnosed Lyme for four years and now WORKS at the place, I figured with yet another coincidence, it’d be worth a try.  But it wasn’t without its glitches; they rescheduled 3 times!  Dan had injured his ankle and his orthopedic had very limited hours.  By the third phone call, I was feeling a little desperate to get there and experience some of his all natural magic. At least the last call was just to make the time later on my scheduled day.

The office is an hour and a half away from my home in Connecticut. I drove down the Merritt Parkway all the way and almost had a panic attack when I saw the sign for the Tappan Zee bridge!  I hate going over bridges if I am driving. Thankfully, my faithful companion, my GPS, directed me to get off the exit before the bridge.  While my appointment was scheduled for 1 1/2 hours, Dan spent 2 1/2 hours with me. It was a pretty unique and eye-opening experience.

I had completed several forms for the appointment that were analyzed by a computer, and we spoke for at least an hour about my issues, the practice, and Western Medicine versus Indian and Chinese medicine. Based on my paperwork, I was having issues with my sugar handling (no surprise there!), my endocrine system and my liver. After discussing my test results, he performed a muscle test, which is based on Chinese medicine. It is designed to test the energy levels in the body to see the strength and weaknesses of the organs.  Dan also uses muscle testing to determine what compounds are useful or not useful to the body. It was  very unconventional in comparison to what I am used to experiencing at the doctors who practice “Western Medicine”.  I wouldn’t have believed what was happening if I hadn’t experienced it myself!

To start the test, I lay down on a table and lifted my right arm, pressing it gently against his left arm. He was pressing and tapping against the muscle of my extended arm, and with his right hand, he was pressing against my organs.  If my arm went down, it meant the organ was weak, if it stayed up, the organ was strong.  When he got to my stomach, he said, “OH!!” as my arm went down.  It was so freaky! ( I had told him earlier that my stomach seemed to be the only organ I wasn’t having trouble with…I guess I was wrong!)

He then put little vials of different compounds, minerals, and toxins on my stomach to test my body’s reaction.  Again, with different bottles, my body reacted and my arm would either stay stiff or fall down. With a particular one, Actonex, I could actually feel my stomach muscles getting tighter with the vial resting there on my stomach.  It was so wild! And my stomach still remained tight several minutes afterwards.

So, after 2 1/2 hours, I walked out of there with three additional supplements to try for my issues with sugar, endocrine system, and liver, and another appointment scheduled for June.

It will be very interesting to see what happens at the next appointment. And I’m looking forward to it.

Maybe I’ll learn something new that continues to challenge my thoughts about medicine and holistic care.

And maybe I’ll be closer to healing.

Yours in Lyme Adventures,

TWL

 

 

 

 

 

 

Smooth

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They slip down my throat,

One by one,

A chaser of water or tea.

 

Following the esophageal path to my system,

My brain and body

hopelessly await big changes

with each oblong or circular

dose of professed natural magic.

 

But that one pill that isn’t smooth,

Is cut into two.

It chokes me

Gags me

Brings tears to my eyes

And makes my heart skip a beat or two until

3 swigs of water get it down.

 

 

Why can’t they just coat the damn thing?

 

 

Research

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Dedicated to Michelle Armstrong, Shelton, CT

When I was in college, I became enthralled with a computer game called Tetris, thanks to my roommate Michelle. The object of the game is to create rows of lines using geometric square and rectangular shapes. A four-line group is called a Tetris, and the computer would start slowly dropping pieces from the top of the screen and increase speed until the pieces were flying down, the player frantically trying to place them correctly to make lines. I recently found another version online, and I am once again obsessed with the game. Only in this version, you are playing against another person, and each time you complete a line, it sends another line to your opponent. You still need to clear lines and try to beat the other player in a 2-minute time frame, but it moves more quickly since your opponent can easily send over more lines than you are ready to handle if they are really good at placing their pieces before you.

This game requires you to be able use what you have as well as think ahead, much like addressing a pressing problem. Right now, my problem is Lyme disease, and it’s a tougher puzzle to figure out than a Tetris game.

In my research about Lyme, I’ve come across different books. My go-to book right now is The Top 10 Lyme Disease Treatments by Bryan Rosner. The 11-chapter book is clearly written and has sections about antibiotics, detoxification, and detailed information about supportive supplements. What I really love about this book is that it gives a holistic approach to treating this disease. Rosner has a detailed portion as well about how there are two very different views in the medical community about how to treat Lyme. He advocates for being knowledgeable about Lyme and to use all available resources, both traditional and non-traditional. Relying on one particular therapy will not help treat or cure your condition, since Lyme is a multi-faceted disease that mutates and has co-infections attached as well. He does state that it is crucial to find the right combination of therapies and also realize that time plays an important role in healing.

I’m also reading Terry Wahls book, The Wahls Protocol. She reversed her debilitating MS symptoms through diet, after researching cellular growth and health. And what a diet she has! It’s all healthy fruits and vegetables, and you need to eat 9 cups a day each of sulfur rich vegetables, leafy greens, and colorful fruits. Not an easy task! The most of the leafy greens I can do a day is 4 cups. My body can’t handle any fruits right now, as much as I’d love some grapes or pineapple, or even an apple, which is not my favorite fruit!  She does advise building up to the 9 cups, however slowly you need to do it, but she urges to just start eating the right foods now to rebuild your sickly cells.

One of my favorite mantras that I gleaned from my graduate work is, “Work smarter, not harder”. And I’ve tried to put this into practice whenever I can, especially with my Lyme issues. A few months back on a more healthy day, I had visited the bookstore and was astounded at all of the gluten-free, vegan, and paleo cookbooks out there! But I refused to buy even one cookbook as my food sensitivities made it hard to actually use any of the books I’d seen. I’d made that mistake early on, buying a smoothie cookbook, only to find out after a big swing of a healthy yogurt and strawberry smoothie, my body couldn’t tolerate the fruit or the dairy. Live and learn.

So, I hit my library instead. After first searching the internet for book titles, I’d then go and peruse the stacks, leaving with about 10 or so cookbooks, thinking that maybe one of the books would be helpful in finding some recipes that my body could tolerate. Many cookbooks later, I was able to photocopy 10 or so recipes. There are just so many foods that my system is sensitive to right now. Sugar free recipes include sweeteners like honey or maple syrup. Gluten free ones include flours made out of almonds or rice, which I can’t tolerate. But I haven’t given up yet. I’ve got two more books on hold at two different libraries–one called Recipes for Repair and another Breaking the Vicious Cycle–that I am hoping will be returned soon. It seems like I’m not the only one with food struggles!20160413_103853

My Lyme adventure is just like a Tetris game: some of the pieces fit, and some don’t. There are gaps in my healing that need to be filled. I keep hitting a wall, but someday, I’m hopeful be able to clear out the lines with the right combination of building blocks.

I’ve already had some success when I started with my naturopath and my dietician back in March, and I just recently went to another holistic practice. The owner who runs it has given me some extra supplements to try. He has helped other people with Lyme, as well as a particular client with very similar issues to mine, so that gives me confidence that I am on the right track.

I am anticipating even more positive results with the start of this new regime of mine. And with the inclusion of more books, of course! I just have to keep finding the right ones to help with my personal Tetris puzzle!

Yours in Lyme Adventures,

TWL

 

 

 

Sugar

imgres-1This is not an article about being overweight or even trying to eat healthier. This is a true story, about a true love affair, one that is dissolving away slowly, due to a nasty little disease that is attacking my body any time I eat anything that resembles sugar.

I wasn’t a fruit eater growing up. Instead, I developed a sweet tooth for all things sugar-related that you don’t find in nature. I preferred the white, powdery kind sprinkled on donuts or the more granular kind poured lovingly into the chocolate chip cookie batter. Cinnamon and sugar sprinkled on my toast in the morning was perfection. Or better yet, strawberry jam slathered all over the warm, buttered bread! Waffles and pancakes with Aunt Jemina’s syrup were just heavenly to me. My favorite part was dipping my bacon or sausage into the left over syrup on my plate.

I’d drink soda when we’d get hotdogs from Rawley’s, a local greasy spoon joint, or the occasional trip to McDonald’s or Luigi’s Pizza. When we’d go visiting at my Grandmother’s house, us kids would get to pass out the hors d’oeuvres- cheese and crackers, or potato chips in a brown basket, or Goldfish in a pewter bowl with fluted edges. My parents would have drinks with my Grandmother, and we kids would have soda with our carb-laden snack. I remember drinking Fresca at her house.

And foods that broke down into sugar, like bread, pasta, potatoes, corn…. I loved these, too! Milk, oh I loved milk! I could drink a gallon of milk in just a few days! One of my favorite treats was milk and cookies. Even as an adult, I’d love to buy different types of cookies, or bake, so I’d have my treat at night.

And don’t get me wrong: my parents weren’t the kind to keep tons of junk food in the house. Generally speaking, we ate pretty healthily for the time when I was growing up in the 70’s. The worst food we ate was probably Chef Boyardee’s spaghetti and meatballs or ravioli from the can. And that wasn’t a weekly or even daily thing! My mother was a good cook, and she always made home cooked meals every night, complete with meat, potatoes, bread or rolls, salad, and green vegetables. I just really liked sweet things to eat!

My body never seemed to have a problem with all this sugar growing up. I was active as a kid, always riding my bike, zooming around outside on roller skates, playing on the swings or running after one, if not all, of my four other siblings. It seemed that it didn’t matter what I ate, I’d never gain any weight. People would make comments about how skinny I was throughout my life. Even after I had married, I’d still get envious looks and comments from family and friends about my petite size. But inside my body, things were happening.

When I married and became pregnant with my daughter, I developed gestational diabetes. imgres-2My initial glucose tolerance test was so high that I was sent to an endocrinologist and started on insulin right away. My body was struggling so much that I needed to check my sugar before and after each meal. I also need two types of insulin—one for the day, and a slow acting one for at night. It was terrible learning how to eat with this new body of mine. I had to be sure I was getting enough carbs for the baby, but not so much as to spike my blood sugar. And when I was pregnant, all wanted to do was eat. I can remember feeling so hungry and only being able to eat ¾ of a cup of pasta for dinner. It seemed horrible to me then, but hindsight is 20-20.

Once my daughter was born, I was considered borderline diabetic, and was monitored for several years, taking various drugs to help with my sugar levels. At one point, my primary doctor told me I didn’t need to take any meds anymore. Hallelujah! I ate and drank all the taboo foods to my heart’s content! (I wasn’t a big soda drinker, but I still enjoyed a glass or can now and then…)

Well…it was a false hallelujah. My new primary doctor informed me this past winter that I am pre-diabetic. I began testing my sugar faithfully again, and also taking another popular pharmaceutical drug used to treat my condition.

Fast forward to January 2016. I am being treated for Lyme, and I am taking antibiotics and other supplements as well as my pharmaceutical drug for my blood sugar. I speak with my cousin, who is a pharmacist. She tells me, get off that drug and take either Grape seed pills or Mangostene. Each of these is a natural supplement that breaks down sugar! So, I stopped the pharmaceutical drug, one which could possibly cause more damage to my already tick infected bloodstream and organs, and began taking the Grape seed pills with each meal. And what do you know? It worked! My levels have been so good that a recent trip to an endocrinologist ended in, “You don’t need to come back for another appointment. Your A1C is normal.” Oh, Happy Day!

Sadly though, I haven’t enjoyed happy sugar days here in the dawn of my great blood sugar levels. I have such food issues with the Lyme in my system that I can’t eat anything that has sugar or breaks down into sugar-no carbohydrates, no fruit, no dairy, no nightshade vegetables (potato, tomato, peppers, eggplant), no nuts. If I do, I feel stinging and burning in my muscles and joints. And the sensations seem to be directly linked to sugar or carb content of the food: the higher the number, the more intense and lingering of the pain.

I’ve never had any allergies to food my whole life. And outside of my gestational diabetes/ pre-diabetic state, I’ve been very healthy. I can only surmise that my pre-diabetic state has added this sugary layer to my Lyme issues. And if I get an urge to eat a cookie, or a tomato, or cheese, my body quickly reminds me that sugar is really bad for me. Nothing like aversion therapy to add a little spice to life! It gets tricky when you are in the store and just happen to walk down the cracker aisle. Or the commercials on TV all highlight chocolate covered strawberries as a wonderful, delicious gift for Mother’s Day. Or a family member takes  a bite out of crunchy, warm garlic bread, and you are eating your kale and romaine salad with olive oil dressing.

All in all, it could be worse, I tell myself. Just don’t eat that cookie in front of me, please.

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Yours in Lyme Adventures,

TWL

 

 

 

 

 

 

Magic Little Pill

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Science, to me, is an amazing entity. There are all these wonderful people on the planet who think about and develop and test ways to improve our lives. Scientists, to me, have so much more power than even the President of the United States. From medical cures to animal preservation and environmental conservation, to space exploration and weather predictions and technology, we are always benefitting from the advances of Science.

When I was pregnant with my daughter, I can remember women talking about their labor stories. Who did it naturally and was proud of it, who had planned C-sections, and who took the Epidural. Every woman’s labor story was different because of her needs and experiences. Sometimes Mother Nature helped along to make those decisions, and sometimes, it was Science. For me, I knew from the minute I became pregnant that I wanted the drugs. I wasn’t one to use medications on a daily basis for even the minutest of pains, but I knew that labor was a whole different beast, and if Science had a way of easing that pain, I was going to reap the benefits of it!

The epidural was like a miracle to me…one minute I was in excruciating pain, the next, no pain at all! I humbly thank the Scientist(s) who developed that drug to help me. And I respect all women who go through their labors in whatever manner they choose-with or without Science.

Now with the Lyme adventure front and center in my life, Science again has both left me adrift and come to my rescue in different ways. Several different doctors have tried to help me, but through no fault of their own, I have had to find a different route to find that “magic little pill” that I have come to know as a cure for any illness.  Sadly, Lyme isn’t just any illness, and much like a cancer, there isn’t one foolproof way to ‘cure’ it. It morphs and changes in your body. Lyme is like a terrorist in your body; it hides from antibiotics and attacks full force when you least expect it. For me, I can always feel it hanging out, like questionable characters on a street corner, staring you down as you pass by.  A slight stinging in my arm and leg muscles and joints is always with me from the moment I wake up. Whenever I put any kind of  Lyme-loving compound in my system, it attacks full force.  And the reactions that I happen to have are quite intense and painful.

Even though I have Lyme in my blood stream as well as some other germs, all the medical doctors I have seen: my primary doctor, infectious disease doctors, and even a neurologist, all say that I am just suffering from a virus, and it has to run its course. Now, I respect these doctors and their expertise, but up until this point in my life, I have never had any sensitivities or allergies to anything I eat. Now,  I can’t eat any carbohydrates, including fruits, nightshade vegetables, peanuts, or dairy, without having an allergic reaction that sometimes requires taking a Benadryl, a drug created by Scientists.  Doctors, please tell me….what virus is it, so that I can treat myself properly?

I have come to terms thinking that my medical team is working on the knowledge that they have from their own Science backgrounds, and because Science evolves every day, it may or may not be helpful to me.  My body chemistry is highly sensitive now to foods that I have never, ever had a problem with over my entire 46 years of life. I can only conclude that just because I have been treated for Lyme with antibiotics, it doesn’t mean that I have even begun to be ‘cured’ from it.

There is no magic little pill that is going to help me with this awful tick blood I have. It’s going to take my own kind of Science that I discover, and the Science of any one else that I can learn from, to reap any benefits to help me feel better. So far, my naturopath and dietician have started to steer me in the right direction.  I can only hope that I will continue to find new ways to help manage the pain and uncertainly that Lyme brings.  It will require me to continue to reach out to people, read books and essays on all kinds of therapies and topics, and try strategies and ideas unknown to me to regain some sense of normalcy. That’s what we do to fight terrorists, right?

I wonder if Scientists are working on ways to eradicate the tick population completely? That would be a positive step in getting rid of this disease. And I would glad celebrate in that discovery!

Yours in Lyme Adventures,

TWL