Has anyone ever died that you know of while doing BVT gang I was thinking that...

%d comments
  • I was dying when I started

  • Me too. That's why my doctor fully supported it. I had absolutely nothing to lose.

  • Xxxxxxx Yzzzzzz Sure. I get it. Me too. I would rather die fighting. I was nearly ready to let go

  • <3

  • F

  • I have seen this reply on several posts. What does F mean KimandMike Thomas?

  • Following the post.

  • Following. the posts Lorraine so u can receive notifications to follow.

  • Xxxxxxx YzzzzzzLattanzi ok thanks

  • Comparing ourselves to others is a recepie for angst.

  • SO TRUE

  • Xxxxxxx Yzzzzzz, do you still sting? As I recall, you are near 2 years of doing BVT? Really like to hear your latest status update. Thanks

  • Why is that a subject ?

  • I hate to ask, but is ALS killed by bee venom ?

  • The gentleman with ALS had only just started bvt and was at 3 weeks. It was too late for him. People die from Lyme and its many complications thats just how it is. We have lost many just since xmas and non were doing bvt. Its a horrid disease. Thankfully many are surviving as well. We do not get a vote on what anyone choses to do to treat themselves. All we can do is share the information and hope for the best for everyone. We are here to share and support eachother.

  • Alternatively, you can turn on notifications for the post without commenting with an F in the comments section

  • No one can answer that question. As no one knows what all causes ALS.

  • Too many gray areas

  • Is it a bacteria Ellie ?

  • I began BVT 2.5 years ago, and still sting. I took a 6 week break recently and after about 4 weeks experienced mild MS symptoms. I have no doubt this is due to destroyed myelin which has not been completely restored (yet) Symptoms resolved once stinging resumed. As to how long it will take before previous damage is repaired; time will tell.

  • Elena Butyleva wow this goes over my understanding

  • And apamin (another component of bee venom) has been proven to have neuroprotective properties.

  • We dont always know. I have seen Lyme induced ALS and not Lyme induced ALS.

  • ok in a person without Lyme ?

  • There are numerous variables, and toxicity such as from metals is often a factor when ALS is present.

  • Lorraine, BVT to treat Lyme specifically is fairly new, and thanks to Ellie, we now know BVT is effective for Lyme, but BVT has been around for thousands of years, and used to treat numerous conditions.

  • Xxxxxxx Yzzzzzz yes that is good to remember. What I am thinking is that I have ALS. My muscles are wasting away. I cant seem to get a diagnosis for anything

  • Personally, I wouldn't worry with a label. I would work to restore balance, address pathogen and/or toxicity if these are present.

  • Xxxxxxx Yzzzzzz its disability. I need money. Cannot work more than 15 hrs week. Had a collapse after full time for two months. Don't know where to get $ for supplements to continue. So far I do have the essentials, I am thankful to no end for that. Things will work out I know

  • I totally get it. I was one of the few 'awarded' disability due to neuroborreliosis. Others with Lyme sometimes are approved due to symptoms rather than a definitive diagnosis. Do you have a doctor willing to write a strong letter on your behalf? This may be helpful.

  • Xxxxxxx Yzzzzzz NO

  • I'm sorry.

  • I have quacks unfortunately

  • Ya really

  • I probably need to get on the stick more.

  • Just one doctor who will vouch for your condition, and why the condition/symptoms prevent you from working (at this time)

  • Xxxxxxx Yzzzzzz You are not alone. I meanl live withut a diagnosis. Me too. The ALS doctor told me once it could take up to 7 years to diagnose with ALS. So, until you don't have it this is definitely Lyme. I have no doubt as I went through it. And Nancy is absolutely right it's better not to label. Lyme can mimic any medical condition muscle atrophies including. I guess the best labs to test for Lyme are Arminlabs in germany and Igenex. If you are interested more here are some very good ALS groups. very positive. they do a lot of staff to treat ALS and Lyme.https://www.facebook.com/groups/ALSNaturally/?ref= bookmarks https://www.facebook.com/groups/healingforals/?ref =bookmarks

  • Xxxxxxx Yzzzzzz if you are a praying woman, I could use it about this

  • I have a Lyme diagnosis. I cant see why a dr wont support me. But they are not LL. And I only read a 40 after doing nothing more for it for 4 or 5 yrs. So it wasnt stirred up

  • Elena Butyleva may I phone you ?

  • Xxxxxxx Yzzzzzz I live in Russia..Is it Ok? And it's almost night here)))))))

  • Xxxxxxx Yzzzzzz someone else does better then I ......whats wrong with me? If someone with the same illness as I pass away from it.........when will I pass away ? Now I project fear and I create stress hormones............this IS REALLY BAD FOR A PERSON WITH LYME...........our attitude is a huge part of our success or failure. On many other Lyme sites people bitch, whine, insult and hate........on this site we want to be as successful as Ellie and Nancy........so we share compassion, we joke, share info and endevor to keep others out of the gutter.

  • There is an ALS patient in Rhode Island. He is coming up on his 2nd anniversary. He had to be carried up 2 flights of stairs 2 years ago. Now he is walking up 2 flightsof stairs without a cane. PM me

  • Lorraine, I am, and I will.

  • Wow!!!!

  • Xxxxxxx Yzzzzzz good, ya'll keep me out. I love ya

  • Lorraine, Social Security won't give disability for chronic Lyme because the CDC officially denies chronic Lyme. You can however, qualify with another diagnosis such as chronic fatigue. Do you have a Dr who will give you a diagnosis that Soc Sec will recognize & accept?

  • Xxxxxxx Yzzzzzz on !

  • Do tell!!!

  • Sounds like a possible ALS misdiagnosis. There are many great articles out "When ALS is Lyme "

  • Lari Manz I don't have a symptom I can name, other than a floored immune system.I mean, I have energy! BUT when I work full time, I have a physical collapse.A dr would ask, why, how did you collapse? Not sure I could answer her? Also standing on my feet on a shift makes me feel faint. Always feel like I should lie down. Wish I could name enough of my symptoms. My dead sea mineral spray ereases the FM

  • Xxxxxxx Yzzzzzz Don't mean to pry but could you say what mild MS showed up? I don't have money for doctors but if I don't sting my limbs turn numb in the middle of the night. Wondered if that was an MS symptom.

  • There are numerous reasons for numbness (circulation, toxins, etc... either way, I wouldn't get hung up on a label) The symptoms I experienced with this last flare were mild and nowhere near the full blown MS symptoms I experienced previously. This flare involved tingling, numbness, some difficulty with movement/coordination, dropping things, some trouble with my legs, spasticity, vision issue, bladder dysfunction, the sensation of walking through cobwebs, and a bout or two with what is known as 'MS hug' which is a tight banding sensation. Ah, good times! lol

  • Xxxxxxx Yzzzzzz what if this means the pathogens are still there and the stinging keeps them under control and when you stop stinging they begin to rear their ugly heads again? How does a person know?

  • No, the pathogen load is very low to non-existent now. (little to no herx) The symptoms I experienced are due to previous damage. Damaged myelin, etc....

  • BV does restore myelin, and I think acts as a sort of 'patch' while myelin is under construction.

  • Elena Butyleva. Arminlabs may only test for European strand of lyme. I sent my blood there and was tested negative while regular lab in the US showed 4 bands

  • My mom died from "ALS" 6 months before I was diagnosed- if only I knew then what I know now :(

  • Understandable Kristina Solara Litzenberger. Sad to hear about your mom. We only know what we know when we are supposed to know it. Big hugs <3

  • Xxxxxxx Yzzzzzz this is marvelous. I wish I could stay off my cell phone too, while healing. That bothers my nerves

  • Lorraine, never keep a cell phone on your body (pocket, etc...) never sleep in the same room with a cellphone, and always use speaker phone when talking on a cell phone.

  • I'm so sorry. That's so sad.

  • Fredo Viola thank you.

  • Ellie Lobel I know friend. You will be happy to know I'm starting BVT on 1 March ;)

  • Xxxxxxx Yzzzzzz ME/CFS? I agree with Nancy that getting hung up on labels is not helpful for healing...but I would look into ME/CFS for disability coverage...

  • I'm reading The Bible of Bee Venom Therapy and he lists several deaths from random Ben stings. Those stings were neck or Throat OR Above THE lip OR After A Large meal. Keep your Epi-pen and liquid Benadryl nearby.