Anyone Tried Lyme-N via Nebulizer or have any feedback?

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FL
New Member


Date Joined Nov 2016
Total Posts : 1
   Posted 11/21/2016 2:35 PM (GMT -6)   
I was recently diagnosed with lyme (have probably had it for 10-12 years prior to diagnosis). My alt doctor wants me to try Lyme-N which is administered by nebulizer for 60 days. According to the literature I received, Lyme-N is a proprietary combination of natural inorganic compounds and organic compounds that are considered antimicrobial and can penetrate the cell wall of microorganisms quickly, producing the desired lethal effects on spriochetes. The cost is $3,800, plus saliva before-and-after testing at $225/test. The doc said that the lyme is contagious so I should treat my entire family of four. According to my doc, the Lyme-N has shown a 100% cure rate in all patients and only one has been reinfected. I can't find out any information on Lyme-N through a Google search....not a website or forum. Anyone have any knowledge to share on this new treatment?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 11/21/2016 3:07 PM (GMT -6)   
Hi FL, welcome to our community!


I'm not familiar with the Lyme-N - but if you're having to pay the $3800 up front...I would advise against it.
If you don't have a good response initially...then it will be a waste of money. Do you know what are the ingredients?

It is thought that lyme can be passed on via sexual contact...maybe via saliva transfer.

But, my opinion it is not something that is 'caught' like the common cold virus.

Is your alternative Dr. a Lyme Literate Dr.?

We encourage all new members to take a look through the thread at the top of the page titled; "New to Lyme?..Start Here!" It's packed full of useful information.

If you're wanting to treat herbally, there are protocols that many people on this forum are using.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

Post Edited (Girlie) : 11/21/2016 2:11:02 PM (GMT-7)


julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3695
   Posted 11/21/2016 3:12 PM (GMT -6)   
I bumped a thread we received about 10 days ago on the same question.
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme positive '92 untreated,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, Cong. Heart Failure, osteoarthritis. Treating PHY. an Internist, LLMD out of the question. Used Doxy, Zithro and Flagyl since June '15, self pulsed.Current treatment with JK, Milk Thistle, beginning Hout. shortly. Will ad new supplements and herbs.

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3695
   Posted 11/21/2016 3:17 PM (GMT -6)   
I'm going to the web for feedback.
This, so far.. www.mdjunction.com/lyme-disease/lymen-nebulizer-treatment-q11637145
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme positive '92 untreated,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, Cong. Heart Failure, osteoarthritis. Treating PHY. an Internist, LLMD out of the question. Used Doxy, Zithro and Flagyl since June '15, self pulsed.Current treatment with JK, Milk Thistle, beginning Hout. shortly. Will ad new supplements and herbs.

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3695
   Posted 11/21/2016 3:26 PM (GMT -6)   
Here is a very interesting entry, with a diary blog from a person who's family (looks like) treated with the Lyme-N nebulizer, and I think they did it at home, not sure, as I haven't read through it all yet.

Very interesting read for all of us!

fightinglyme.weebly.com/lyme-n-blog/different-nebulizer
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme positive '92 untreated,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, Cong. Heart Failure, osteoarthritis. Treating PHY. an Internist, LLMD out of the question. Used Doxy, Zithro and Flagyl since June '15, self pulsed.Current treatment with JK, Milk Thistle, beginning Hout. shortly. Will ad new supplements and herbs.

Karina1000
New Member


Date Joined Nov 2016
Total Posts : 14
   Posted 11/22/2016 11:58 AM (GMT -6)   
Hi FL

I initially started off with an holistic MD that doesn't believe in the antibiotics and she recommended Lyme_N as well, to me and my husband. She took it and felt better and says she has a dozen pts on it that have all seem significant improvement. I do think it is very strange that you cannot find any information on it. I don't think this doctor would prescribe anything to get money out of it, but I just find it so suspicious that if it has curative properties, don't you think this would be a big thing in the news?? I know we are all desperate for a cure, and I want so badly for this to be one. But its just so vague and strange that only alternative doctors know about it and prescribe it and LLMDs know nothing about it. Anyway, my first doctor sent me a FAQ PDF on it-I posted it on another bumped thread about Lyme N that I started a few days ago. I cant cut and paste it right now but maybe you can check it out and see what you think.
I keep asking my LLMD to check it out but she is a quite determined to blow it off. She said she just attended a yearly Lyme conference where docs get together to talk about findings and it was never mentioned.

yancync
Regular Member


Date Joined Nov 2015
Total Posts : 380
   Posted 11/22/2016 12:16 PM (GMT -6)   
They used to have a very basic website but took it down a few months ago. I was approached on a Yahoo board by the woman who said her sons are cured. She is still promoting it but when I asked what was in it I never could get an answer. Also, I was never clear if it claimed to cure co-infections too. Most folks have multiple infections including fungal so I'm skeptical it would be a cure-all.

There is no way I would put my DS who already had tons of breathing issues on a nebulizer full of unknown stuff. Can you imagine if something happened or I had to take him to the ER and tell them, "well he's breathing some sort of stuff in this nebulizer - not sure what it is?!!! To me these business practices are NOT a legitimate way to show you have a Lyme cure! Now this person is saying that a certain number of LL practitioners are using it and are to report back to this private company about how their patients are doing. Not to mention that the whole family should use it?! None of the rest of us show any signs of tick diseases currently and we do not share utensils/food etc. We also don't have an extra $12K to treat 3 non-symptomatic/negative persons in our family

I do have in my email files an email from someone who decided to use it along with her mother. It's been a few months so I will try and find it and see how they are doing. I don't recall what stage this person was. I'll keep you posted.

Post Edited (yancync) : 11/22/2016 11:23:05 AM (GMT-7)


LymeNMom
New Member


Date Joined Feb 2017
Total Posts : 12
   Posted 2/23/2017 11:25 AM (GMT -6)   
I'm actually 1 month into my Lyme N treatment after many months of antibiotic treatment that was not successful. So far, I'm feeling much better.

This is what I can tell you about it. It isn't available to the general public yet. They are allowing specific Lyme literate Dr's offices to provide it to their patients. The makers of Lyme N are using these patients to gather data for a trial. They make you fill out a bunch of forms reporting your symptoms before and after you're done with treatment. A llmd in my office used it herself after being on iv antibiotics for many years and considers herself to be completely better now.

I don't think you're going to see it being touted as a cure just yet bc they're still gathering data on it. My Dr also said they are hesitant to let big pharma and the gov't in on it yet. They don't trust them to do what's best for the patients. They'd like this eventually be available to the masses. The scientists who invented it are a group of old men from MIT who've had a lot of success with cancer treatments before they decided to dive into Lyme. Many of their family members were coming down with it and they wanted to find a treatment for them.

Karina1000
New Member


Date Joined Nov 2016
Total Posts : 14
   Posted 2/23/2017 11:40 AM (GMT -6)   
Thanks for clearing up a lot of the questions we have had! How do you find a doctor that will prescribe it if it's still in trial period? Also since it's in trial, do you have to pay for it? Are you having die off reactions or do you just feel better right away? Does it have to be catered to each person or is it one fits all type of treatement?
If this does work, how long before it is available to the general public?
Many thanks for your help!!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 2/23/2017 12:07 PM (GMT -6)   
LymeNMom said...
I'm actually 1 month into my Lyme N treatment after many months of antibiotic treatment that was not successful. So far, I'm feeling much better.

This is what I can tell you about it. It isn't available to the general public yet. They are allowing specific Lyme literate Dr's offices to provide it to their patients. The makers of Lyme N are using these patients to gather data for a trial. They make you fill out a bunch of forms reporting your symptoms before and after you're done with treatment. A llmd in my office used it herself after being on iv antibiotics for many years and considers herself to be completely better now.

I don't think you're going to see it being touted as a cure just yet bc they're still gathering data on it. My Dr also said they are hesitant to let big pharma and the gov't in on it yet. They don't trust them to do what's best for the patients. They'd like this eventually be available to the masses. The scientists who invented it are a group of old men from MIT who've had a lot of success with cancer treatments before they decided to dive into Lyme. Many of their family members were coming down with it and they wanted to find a treatment for them.


Hi LymeNMom - welcome to our community!

Do you know what the ingredients are in this protocol? That is what is concerning to me.

We encourage all new members to read through the "New to Lyme?..Start Here!" thread.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35211
   Posted 2/23/2017 12:17 PM (GMT -6)   
Hi LymeNMom!
Welcome to our community! I'm so glad you found us.

Thank you for your information on the Lyme N treatment. I too am very curious just what's in it, as I won't use anything that I don't know the ingredients of - not only do I have some odd allergies, but I have just learned to make that my personal policy. I've fought too hard for the little health I have, I don't chance compromising that easily.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

LymeNMom
New Member


Date Joined Feb 2017
Total Posts : 12
   Posted 2/23/2017 12:41 PM (GMT -6)   
I actually just got lucky. I hadn't even heard of Lyme-N when my Dr. offered it to me. I just so happened to be in a Dr's office in NH that offered it. According to my Dr., the next closest Dr's office offering it is in PA. I do still have to pay for it, but we used our health savings account, so that helped. I did have die off reactions but they were not as bad as when I was on antibiotics. I was encouraged to do the treatment twice a day for the first week because I guess it helps with the herxing, but I didn't think it was that awful. It's taken time to feel better..slowly. I'm def not 100% by any means, but the pain is disappearing and my energy level is increasing. I'm not sure when it will be available but I'm sure I'll learn more about it from my Dr in upcoming appointments smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 2/23/2017 12:44 PM (GMT -6)   
LymeNMom said...
I actually just got lucky. I hadn't even heard of Lyme-N when my Dr. offered it to me. I just so happened to be in a Dr's office in NH that offered it. According to my Dr., the next closest Dr's office offering it is in PA. I do still have to pay for it, but we used our health savings account, so that helped. I did have die off reactions but they were not as bad as when I was on antibiotics. I was encouraged to do the treatment twice a day for the first week because I guess it helps with the herxing, but I didn't think it was that awful. It's taken time to feel better..slowly. I'm def not 100% by any means, but the pain is disappearing and my energy level is increasing. I'm not sure when it will be available but I'm sure I'll learn more about it from my Dr in upcoming appointments smile



Are you not a little apprehensive not knowing what you're taking? - what the ingredients are?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LymeNMom
New Member


Date Joined Feb 2017
Total Posts : 12
   Posted 2/23/2017 1:16 PM (GMT -6)   
I was told it was basically minerals and bacteriocides (not sure how to spell it) that are all at levels that are very safe for human use. The fact that they're administered by the nebulizer means the med is broken down into such small particles you're basically crop dusting your body to to get at and kill the Lyme, almost instantly. Antibiotics (depending on which ones you take) do not instantly kill the Lyme...some stop them from reproducing..yada yada yada...this kills it right away. I was satisfied with my Dr's answer for what's in it...and since it isn't patented yet, i'm not surprised they aren't handing out the names of ingredients. I have grown to trust my Dr in the last year and another Dr there gave me her personal testimony. I thought it was worth a shot.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35211
   Posted 2/23/2017 2:31 PM (GMT -6)   
Sorry, I got a giggle out of you putting in there you weren't sure how to spell that - not sure I would either. We sure do have to use a lot of those really big words, don't we?

Well, I'm glad you are seeing good results, maybe this will be the next 'big' thing in Lyme treatments. It would be nice if something came out soon that would help the majority of patients!!

Thank you for being so patient with us and all of our questions. I'm still going to wait until more information comes out though before I consider using it - if I could even get it. Not one LLMD in my state.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Kaylor91
New Member


Date Joined Feb 2017
Total Posts : 7
   Posted 2/26/2017 6:50 PM (GMT -6)   
A family friend has recently been given the Lyme-N after paying A $3,800 donation. We tested the solution with a mass spectrometer and the results ONLY pulled Iodine. Nothing else. Do not be scammed by this company. Iodine does not cost anywhere near that amount of money and that's why they won't tell you the ingredients. I hope this helps those who are tempted to shell out the money for this.

Post Edited (Kaylor91) : 2/26/2017 7:48:53 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 2/26/2017 7:02 PM (GMT -6)   
Hi Kaylor91 - welcome!

I don't know what a mass stenographer is... Can it be relied on for this?


Personally, (I've stated this before ) - I would never take something that I didn't know the ingredients.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Kaylor91
New Member


Date Joined Feb 2017
Total Posts : 7
   Posted 2/26/2017 8:15 PM (GMT -6)   
I apologize, my auto correct must have changed my wording during the last post regarding the method used. The device is a mass spectrometer. https://en.m.wikipedia.org/wiki/Mass_spectrometry

Edit: corrected in post

Post Edited (Kaylor91) : 2/26/2017 7:48:33 PM (GMT-7)


LymeNMom
New Member


Date Joined Feb 2017
Total Posts : 12
   Posted 3/3/2017 9:10 AM (GMT -6)   
Kaylor91, I don't know who you are. If these men were so bold as to put only Iodine in a bottle and market it for $3800.00, that takes some balls. Excuse me if I don't take your analysis seriously. I guess they'll have a nice law suit on their hands?

LymeNMom
New Member


Date Joined Feb 2017
Total Posts : 12
   Posted 3/3/2017 10:31 AM (GMT -6)   
http://fightinglyme.weebly.com/faq.html

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35211
   Posted 3/3/2017 10:56 AM (GMT -6)   
With so very little known about the Lyme-N, we must think carefully about it, as there ARE a lot of scams out there targeting chronic Lyme patients. Please do NOT be upset that we question things, as we must if we ever wish to find what will work for us to get our lives back. Many of us have been ripped off and I'm one of those that simply will not use something that I don't know the ingredients of, not only because I have allergies, but I NEED to know what I'm putting into my body. Otherwise, I surely wouldn't watch my diet as closely as I do. smile
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 3/3/2017 11:12 AM (GMT -6)   
Even if it's more than just iodine...we still need to know whats in it.

As Traveler stated, people have allergies so we can't just blindly take something.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Kaylor91
New Member


Date Joined Feb 2017
Total Posts : 7
   Posted 3/3/2017 2:41 PM (GMT -6)   
The only chemical that showed to be present was Dietary Iodine. The woman from the "blog site" told me that the "scientist" did in fact tell her that the product was Iodine but that he adjusted the "ions". If this isn't a huge crock of BS than I don't know what is.

LymeNMom
New Member


Date Joined Feb 2017
Total Posts : 12
   Posted 3/3/2017 3:14 PM (GMT -6)   
so you spoke to her?

Kaylor91
New Member


Date Joined Feb 2017
Total Posts : 7
   Posted 3/3/2017 3:16 PM (GMT -6)   
Yes, we spoke through email
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