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

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Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35211
   Posted 3/10/2017 12:15 PM (GMT -6)   
While I do certainly understand all the questions (I have them too!), but let's be really careful to not attack other members. I'm am NOT saying that anyone is attacking another member at this point, this is just one of those "friendly reminders".
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 4/9/2017 9:21 PM (GMT -6)   
Hey, haven't seen these other replies in a while. I'm not impersonating anyone. If you'd like to know my real identity, I'll give you links to my social media accounts. I don't have all the answers. All of the information that was given to me came from a long sit-down conversation with my doctor about Lyme-N. The MIT story is from her. You don't have to believe it..skepticism is good. I'm a SAHM who has been fighting Lyme for the last year after diagnosis (no idea how long I've actually had it). I just hope it works. If you'd like more information, I have 2 contacts for Dr's who are involved in the study..and it is a study..they're collecting information from all of the patients who've taken it. I just know I've been so sick for so long and I have 2 kids to take care of who need a mom. I want my life back, so I tried it.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 4/9/2017 9:33 PM (GMT -6)   
Hi LymeNMom -

So have you experienced any improvements since you've been taking it for the last 3+ months? Or is it too early?
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 4/10/2017 8:38 AM (GMT -6)   
That was what I was going to ask - I'd like to know your personal story with the Lyme-N! When you have the time, would you please consider telling us?
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 4/17/2017 9:40 AM (GMT -6)   
I would say I'm about 75% better. I was very bad when I started Lyme-N. I had done antibiotics and herbs for about 8 months and it just wasn't cutting it. I still had tremendous joint pain, muscle spasms and inflammation.

The problem is, when I first started Lyme-N I was in the 3 month process of trying to kick bronchitis that had turned into pneumonia (not exactly the best time to start a nebulizer treatment). I was already on Breo and albuterol bc my asthma was acting up and I needed oral prednisone on top of it..the pneumonia made it impossible to breathe. I had to stop Lyme-N after 6 days because of this and wait until my lungs were under control. It was a rough winter. I started back up with the Lyme-N too soon, I'm almost sure of it. I was so impatient bc I wanted to start feeling better.

I finished my 60 days but still had at least 1/3 of it left in the bottle. I don't think the first 2 weeks of Lyme-N was absorbed very well due to my lung function, so I decided to finish the bottle. Once I started back up I had a huge herx for 3 days and now I'm feeling much better.

I was supposed to follow up with my LLMD 2 days ago but my kids got me sick so I'm going to go back next week and see what she says. Residual symptoms are swelling/numbness in my hands and moderate pain from time to time that migrates around my joints. I'm still holding out hope that this is killing the lyme and my body just needs time to heal. I'll continue nebulizing until it's gone though.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35211
   Posted 4/17/2017 10:16 AM (GMT -6)   
Thank you for posting your story!! I'm so happy to hear that it seems to be working for you too!

Please do let us know what your doc has to say! I would say that we are all interested in new treatments and curious to see if they really work. So often, they may not.
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)

Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/22/2017 3:55 PM (GMT -6)   
Hey all,

I recently stumbled upon this thread when trying to find information about Lyme-N. I must admit, it has been hard to find any solid information and I have several reservations about it. The cost, especially, prevented me from trying Lyme-N for a while.

That said, my doctor had several patients who seem to have made significant progress from Lyme-N. My doctor actually tried the treatment as well and had positive things to say (my doctor also has/had Lyme).

Since nothing we had tried so far and we trust our doctor, my sister and I both decided to try the Lyme-N protocol (we both have Lyme and coinfections). We are about one month in to it. I haven't noticed too much of a difference, maybe a bit better at first... but I have felt a bit more fatigue recently (perhaps all the detox and such). My sister says she might be starting to feel a bit better, but it is too soon to tell.

I expect that we won't know much until we check in with our doctor after treatment (early June). I've had Lyme for a while (uncertain exact timeline, but I've had progressively decreasing health since 2002... only a recent Lyme diagnosis), so all the adrenal fatigue stuff might slow symptom relief in terms of fatigue.

So, I just wanted to say that I'll update you all on our progress. In the meantime, I'm going to check out the resources on this thread in case this doesn't work out. The "New To Lyme?.......Start here!" thread looks like a good place to start. I am really impressed with all the information here, especially concerning herbal treatments.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 4/22/2017 5:25 PM (GMT -6)   
Hi Kraavdran - welcome to our community!

Please do update us after you've seen your Dr. in June.

There certainly is a ton of information here on this forum...keep reading...ask questions..or just come here for support if you have a bad day.
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 4/23/2017 11:21 AM (GMT -6)   
Hi Kraavdran!!
Welcome to our community! I'm so glad you found us.

As Girlie said, please do update us and let us know if you have any questions!! We are here to help as best as we can!

If you do get the opportunity to find out the ingredients of the Lyme-N, please do be sure to share that as well! That's the question of the day for that treatment - just what's in it? Many of us have sensitivities and allergies, and we just don't want to find out the hard way what's in it.
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)

Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/25/2017 7:50 AM (GMT -6)   
Thanks for the warm welcome! I'm really impressed with the community here.

I'll be sure to give an update, definitely.

In terms of Lyme-N ingredients, my doctor hasn't been told what is exactly in it (I guess the creator is keeping it a secret). Based on the color and taste, my doctor said it probably contains iodine (which can be an allergen). I've read a couple rumors that Lyme-N is just iodine, which is concerning.

That said, I understand the hesitance to try something without knowing the ingredients. I (and my sister both) tend not to react well to chemicals (MCS) or drugs and have allergies (environmental, dietary, etc). I wish that I knew more to tell you.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35211
   Posted 4/25/2017 8:10 AM (GMT -6)   
We do appreciate that you would share that information if you had it!! Thank you! I also have other concerns, such as I'm very allergic to soy, and knowing how sensitive others can be chemically (like you & your sister), it's not a product that I feel I can recommend/encourage without knowing that. I just wonder if the makers understand that about Lyme patients, since they aren't releasing the ingredients? (not a question intended for you though! LOL!)

But, we are always wanting to know how a person is doing on their treatments!! So thank you! We look forward to getting to know you and your experiences better!
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)

Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/26/2017 4:48 PM (GMT -6)   
I can relate to that for sure. I'd have to agree, even if this does work, I don't know if I'd be able to recommend it to anyone for the same reasons you listed. I really hope that the company releases the ingredients list. Although, if it happens to just be nascent iodine, they might have a vested interest in not doing so.

LilJadedBunny
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/27/2017 6:37 AM (GMT -6)   
In response to Kaylor, the scientist who's traveling to China because he's found a way for pandas to ovulate more often, and who happens to be one who created this nebulizer treatment, did the person who was blogging about it and talking to you give you a name of this scientist? If not I can potentially find out who he is. My grandfather Dr. Donald Lindburg, successfully bred the pandas while running their conservation program at the San Diego Zoo. If this scientist is truly involved with the pandas, he'd likely know who he is. Zoo's are trying to implement his own breeding research and protocols all over the globe. He was traveling to china yearly to negotiate contracts for each panda they borrowed. He's been on the cover of National Geographic for conservation efforts on Cheetahs. Since he retired he's done some work at the UN level and wrote a few books. He knows many scientist involved in zoology and conservation of endangered species, especially, PANDAS. I'm really curious suddenly about this scientist who's claiming the nebulizer treatment and efforts to help pandas ovulate more. From my understanding, their ovulation has nothing to do with the decline in species, but more so about deforestation. If you have anymore information about this nebulizer scientist to offer up, please let me know. I'd like to get to the bottom of this for my own reasons and for the sake of others. I'm truly tired of us Lyme sufferers having to deal with and sort through a lot of snake oil and scammers who are trying to cash in on our suffering, and I'd like to figure out this person's credentials and reputation amongst the zoological societies here , if he has any. Thank you.

LilJadedBunny
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/27/2017 6:45 AM (GMT -6)   
By the way, hello folks. Pardon me, I don't mean to be rude. I'm not new to this site but I've never registered or anything. I just quietly read as much info as I can. I was just reading the Lyme forum tonight in hopes of learning about other treatments since my 10 months on 4 antibiotics have failed. I'm 1 month off and already relapsing. I was first infected with Lyme when I was 12, I'm now 33. Born and raised in California. LLMD'a are pretty scarce out here. I just ran across the comment about the scientist and pandas and iodine, and got a little disturbed. I'll be having a talk with my grandfather tonight. Good day, everyone!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 4/27/2017 9:43 AM (GMT -6)   
Hi LilJadedBunny - welcome!

Kaylor hasn't been back to post since her last post on this thread....and her email isn't enabled.
You can subscribe to this thread - so that if anyone posts on it..you will get an email.

(Not sure if you know that)

Sorry that you relapsed. Before you stopped the antibiotics were you symptom free?

Do you have a LLMD? If you are searching for a new one...you can start a new thread titled: "Looking for LLMD in/near______" and fill in the blank.


You can also shoot me an email and I will check my list and send you any names I have for your area. There are quite a few on my list for California...

We encourage all new members to read through the thread at the top of the page title: "New to Lyme?..Start Here!" It's packed full of useful information.
Even though you aren't 'new' - you may find something in there you haven't seen before.
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

blimeylimeymaggie
New Member


Date Joined May 2017
Total Posts : 1
   Posted 5/25/2017 6:03 PM (GMT -6)   
I tested positive for Lyme via Igenex in 5/2016, Bartonella in 3/2016 and likely Babesia. (In retrospect likely had for a decade or more.) I had severe symptoms starting in 7/15. I did abx for 12 weeks targeting Bartonella 5/16-8/16. .

For the 4 weeks post abx for Bart I was better but still only about 60% me. Had been on herbal treatments but was only minorly functioning as me. (example-- couldn't raise arms to get plates/cups from cabinets, couldn't stand through shower, couldnt put my hair in a ponytail, INCREDIBLE pain standing/sitting/climbing stairs, lots of anxiety and 'world coming to an end' level of fears.)

My Lyme-N experience: NOTE: I used the loading dose regimen and loading huffing method of nebulization.

After about 48-72 hours I felt immensely better: energy, clarity, joint pain all were so much better. I continued on as prescribed but sort of down shifted. My LLMD in consult with Largo Science team had me extend treatment into mid Feb. My clarity and mojo as me were largely back but I still had great pain in my large muscles and some cycling of previous symptoms.

It was suggested I could continue then with Lyme N. I chose (not due to any unhappiness with Lyme-N results) to d/c Lyme-N and focus on detoxification.

Ninety days out +/- I remain so much better than I was! I do have cycling of symptoms-- very strange-- I have chills (likely Bart) and every symptom I've had over the past two years rapidly cycles through me lasting maybe 2-4 minutes each (some joint pain is quite severe but brief) and usually finishing with panic/anxiety/fear attack. I finally get very hot and sweaty, sleep it off and am back to where I was. This appears to be aligning with a pattern in my menstrual cycle.

I believe the Lyme N is still supporting my recovery and think that I will continue to see an overall upward trajectory in my health. (Note I'm GF, largely paleo and I got a tabletop Berkey water filtration cauldron for Christmas (really check it out-- I'm quite sold on its benefits!)

Most of my pain seems related to detox-- though I still have some pretty bad knee joint pain. Most of my pain feels almost like inflamed muscles-- so I'm chasing inflammation at the moment.

Would I do Lyme-N initially again?? Absolutely! It was well worth the money-- and less than my lab bill from igenex!

Will I do it again?? There seemed to be a sense within the community that this was an immediate cure-all....and some people, particularly kids do seem to have had that response. There's also plenty of indication that this is a formula that works with your body to allow your own body to takeover 'maintenance' and that some people are needing a little support months out. If that seems to be the best course for me, I will do it.

Yes-- it looks like iodine and tastes like iodine-- but I believe that is merely the carrier ion. (In unrelated experimental nebulizer trials for other illnesses in EU, iodine is the carrier of choice.)

I completely concur with anyone gnashing their teeth that GRAS is really not a substitute for knowing the ingredients and I dont buy their story that it's like the secret seasoning recipe for KFC. But if you will let yourself get past that and the crazy disclaimers you must sign, you really may find the relief for which you've searched. My story (as well as all the ones out there) is anecdotal.But I personally know of twenty people who have been helped by Lyme-N. Hope this helps in your information gathering.

Post Edited (blimeylimeymaggie) : 5/25/2017 6:11:54 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 5/25/2017 11:18 PM (GMT -6)   
Hi, blimeylimeymaggie, welcome to our community!

Thank you for sharing your story with the Lyme-N.

I hope you continue to improve - please keep us posted!
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 5/26/2017 8:50 AM (GMT -6)   
Hi BlimeyLymeymaggie!
Welcome to our community! I'm so glad you found us.

And, as Girlie said, thank you for sharing your story with us! But, as someone with some serious allergies, I am one that would not take it without knowing what's in it - so until they choose to release the 'secret ingredient list', I'm sure I'm not the only one with allergies that needs to remain vigilant in protecting what little health I have left.

I do hope that you continue to post and let us know your progress though! It could be an option for others.
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)

Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 6/18/2017 7:48 PM (GMT -6)   
Hey all, sorry for my delay in giving my (brief) update. So, I haven't been feeling well the past several weeks (mental/physical fatigue, body ache, etc... you know the drill). Honestly, possibly worse than I started, especially in relation to my memory. My doctor said that that was expected. (Assuming that the Lyme-N protocol works... this is, apparently, when Lyme coninfections start cycling through and such). And, of course, the damage Lyme caused to the brain, nervous system, adrenals, etc doesn't heal quickly.

My doctor put me on some supplementation that will help with detox and lymph-drainage... as well as helping with some genetic things that were found in a previous test I took (most relating to detox/etc). I'm also on an herbal tincture from a family friend who works with herbs. Once I work up the mental energy, I'll have to check out the forum to see what people here recommend for all that stuff.

My sister is having fatigue and pain symptoms as well, but said that her head was noticeably clearer and she has been able to do a little bit more physical work. I am hopeful, although it seems that I might not know until fall whether I am actually doing better than I was... which is a bit frustrating.

I think that we will be getting retested for Lyme spirochetes in... 16 days or so. So, whenever I get the results back, I'll let you guys know how the results end up (this is the testing recommended by the Lyme-N people). Should be back in 1.5-2 months, if I remember correctly.

Also, BlimeyLymeymaggie, thanks for sharing your experience! I'm glad that it has been, for the most part, positive!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 6/18/2017 8:12 PM (GMT -6)   
Kraavdran - thank you for posting an update.


With most treatments, we often do feel worse for awhile before we see improvements. I hope this is what is happening with you.

Please keep us posted.

- How are you getting retested for lyme spirochetes? The testing won't tell you if you do have active lyme disease.
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

Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 6/19/2017 7:51 AM (GMT -6)   
Girlie - Thanks, I appreciate the reminder that others feel worse before seeing improvements too. Here's hoping.

The test that Lyme-N recommends is one that tests the saliva for spirochetes (it is my understanding that they look for them visually, so it is a somewhat slow process). We have to get our teeth cleaned and then wait 2 weeks before we take the test again... I guess to see if new spirochetes are present? It is my understanding that, after successful Lyme-N treatment, the spirochetes should be gone...

... but I have to admit, I don't know much about the testing process. I'll see if I can post the original test results, in case that helps.

Edit: I don't think that I can post a picture here from my computer. But if you are interested, I can email you the .jpg. I couldn't find any reports from other people online except for a blog specifically talking about Lyme-N... but it only shows the "after treatment" pictures.
(http://fightinglyme.weebly.com/uploads/2/6/8/3/26837190/mac-tech-2_orig.jpg)

Post Edited (Kraavdran) : 6/19/2017 7:58:53 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 6/19/2017 9:55 AM (GMT -6)   
Testing the saliva - not sure if that's reliable.

1) There are dental spirochetes - Can they distinguish? (hope so)

2) The saliva sample may not have any in that particular sample....but you could still have the lyme spirochetes...just not in that sample.
...or do they test many saliva samples?


I know the PCR blood test for lyme (which looks for dna of the bacteria in the blood) - if you get a positive - you can take it to the bank (positive is positive)

but a negative means nothing.

Maybe the saliva testing - several samples is taken and higher accuracy?

You're right - you can't post photos on here.
You can post a link to a photo...but you need to use a third party site - such as Photo bucket or tinypic.
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

Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 6/19/2017 11:05 AM (GMT -6)   
Oh, those are good questions. To answer them (to the best of my limited knowledge)...

1) My test results identified a few "wild type" spirochetes. When I first got those results, I did a google search about what wild type spirochetes were. It seemed to mostly talk them in reference to Lyme Disease.

2) A good amount of spit is tested, and the directions instruct you to not brush your teeth or floss for some number of hours (36, I think) before the test. I think the theory is that spirochetes like to hang out in plaque and stuff.

I hope that helps. To be honest, I am uncertain what to think about the accuracy/validity of the test.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 22797
   Posted 6/19/2017 11:17 AM (GMT -6)   
Kraavdran said...
Oh, those are good questions. To answer them (to the best of my limited knowledge)...

1) My test results identified a few "wild type" spirochetes. When I first got those results, I did a google search about what wild type spirochetes were. It seemed to mostly talk them in reference to Lyme Disease.

2) A good amount of spit is tested, and the directions instruct you to not brush your teeth or floss for some number of hours (36, I think) before the test. I think the theory is that spirochetes like to hang out in plaque and stuff.

I hope that helps. To be honest, I am uncertain what to think about the accuracy/validity of the test.


Well, I'm thinking if it was a reliable test to use - it would be something the other Lyme testing labs would be using?

They are still using blood and/or urine for testing....
What's more important - how you are feeling. Are the symptoms diminishing...leaving...that's how we truly know if we are defeating it.
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

Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 6/19/2017 11:32 AM (GMT -6)   
That is a fair point. If it was (more) accurate, other labs would probably do it more. My doctor had originally wanted me to do a urine test. But then she found out about this saliva test and told me to do it instead.

Mhm, how I'm feeling is more important. Like I mentioned a while back, I feel a bit worse now... but I should know by wall whether I'm improving or not. And, of course, I'll keep you all updated.
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