Anyone Tried Lyme-N via Nebulizer or have any feedback? - Part 2

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Girlie
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Date Joined May 2014
Total Posts : 33798
   Posted 6/19/2017 1:26 PM (GMT -6)   
Link to Part 1: www.healingwell.com/community/default.aspx?f=30&m=3746101


Please post in this thread - Part 1 has reached 4 pages.
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

Post Edited (Girlie) : 6/19/2017 12:30:03 PM (GMT-6)


Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 13
   Posted 6/19/2017 2:01 PM (GMT -6)   
oh, sorry. I realize that I had a typo in my previous post. That should read "I should know by Fall". Not "I should know by wall." In other words, I understand that it can take months before signs of recovery are apparent. Pardon.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 6/19/2017 2:06 PM (GMT -6)   
Kraavdran said...
oh, sorry. I realize that I had a typo in my previous post. That should read "I should know by Fall". Not "I should know by wall." In other words, I understand that it can take months before signs of recovery are apparent. Pardon.


You can go back and edit your post if you want.


We just don't want anymore new posts...we try to keep our threads from going on too long.
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 : 13
   Posted 8/17/2017 5:41 PM (GMT -6)   
For those that are interested... here's my experience since finishing Lyme-N (Around the beginning of June) so far:

I finally got the test results back from my follow-up Lyme test by the Lyme-N people. It did not detect any spirochetes. So, if everything is legit, the Lyme is gone. If everything is not legit, there's no surprise that I'd test negative after they know I was treated.

In terms of symptoms, I'm still feeling the fatigue (et al.) pretty strongly. I have noticed that I am able to rest a bit easier and *maybe* have a speck more stamina... but nothing solidly significant or life-altering. Which, I know, is not uncommon. I'll post again with any new information/updates.

oh, also, I remember somebody asked about why nobody else uses the saliva test for Lyme to find spirochetes. I asked my doctor and my doctor said that it was a new method. And it is a bit tedious since they visually look for the spirochetes. I wish I knew more of the specifics (research studies suggesting effectiveness, etc).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 8/18/2017 1:33 AM (GMT -6)   
Thanks for the update.

Question regarding the spirochetes in the saliva.

So you're talking about lyme spirochetes? (not dental spirochetes in the saliva)

Other than fatigue - what are/were your other symptoms? Did they resolve with this treatment?
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 : 13
   Posted 8/18/2017 8:37 AM (GMT -6)   
According to the test, "No observed Wild Type spirochetes, Round Body, Cyst, or Variation forms." It is my understanding that these are related to Lyme disease, so I think that is what it is looking for. The test also notes other types of bacteria ("Streptococcus, Staphylococcus, Fusobacterium nucleatum, Candida or Vibrio")... but I don't think that those are related to Lyme.

So, it's hard for me to discern what is a symptom of Lyme and what is just general health issues (if there is a differentiation... I've had most of my symptoms since '01). But, that said, the primary symptoms I have noted are just physical fatigue (likely related to adrenal fatigue, can be felt in heart) and mental fatigue (mental, and associated brain fog, forgetfulness, and depression). Those are the symptoms that ultimately forced me to drop out of college and prevent me from working. I also experience dizziness (probably related to adrenal fatigue). While I do have a generalized muscle ache and some mild discomfort around my joints, I don't have the pain that most people describe with Lyme disease. Some other things, mostly associated with auto-immune issues: Asthma, allergies (seasonal, indoor, food), insomnia, digestive issues, heat intolerance, and chemical sensitivity.

I haven't felt noticeably better with any of these symptoms since treatment (with the possible exception of it being a bit easier to rest and *maybe* some increased stamina... but nothing big or clearly connected).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 8/18/2017 10:49 AM (GMT -6)   
It does sound to me that you've still got symptoms that need addressing.
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 : 13
   Posted 8/18/2017 12:10 PM (GMT -6)   
Mhm, for certain. I am being treated for these symptoms as well, mostly through supplements (which do seem to help noticeably). I've got an appointment with my doctor later this month, so I'm going to check in to see why I'm not beginning to see much (significant) relief. I know that it has only been a few months since completing treatment, but I thought I should notice something significant by now.

HLymer
New Member


Date Joined Sep 2017
Total Posts : 1
   Posted 9/2/2017 7:24 AM (GMT -6)   
I used Lyme-N for around 75 days.

I believe I've had Lyme for around 3 years. My symptoms have been primarily joint pain, muscle pain, insomnia and fatigue. I kept getting worse and worse and around February I was no longer able to work. I could barely get around by limping and it hurt do anything. I finally figured out that I had Lyme (after being told repeatedly that this just happens sometimes as you get older) at the end of March.

I took Doxy for 30 days. I started to improve, but everything still hurt (neck, back, shoulders, knees, muscles everywhere) and I still couldn't work or do much at all.

Based on Dr. recommendations, I cut out many foods from my diet and ate mostly meat and veggies and still am careful with my diet today, but hope to introduce foods as time goes on.

Around May 1st, I started Lyme-N. My throat felt raw the first couple of days and the Lyme N in my lungs caused me to cough a little. Other than that and some herxing, the Lyme-N was pretty easy to handle. Much better than the Doxy.

I gradually improved on the Lyme-N, with ups and downs. Towards the end of the treatment period (60 days, I think), I suddenly started to feel a bit worse, so my Dr. suggested I stay on it for another couple of weeks. There was enough left over to do that.

Right around the time I finished Lyme-N, I had improved enough that I was able to start working full time again. I had started part time around a month previously and worked my way back to full time.

Throughout this time I took Epsom Salt baths daily and took Methyl Folate. These helped me tremendously with herxing.

After a couple of days of being off Lyme-N, my eye became infected. I believe this was the Lyme as well. I also started feeling a little worse in other ways.

I started taking the Vital Plan herb protocol after a few days off of Lyme-N. I believe this has helped me quite a lot. Although my eye infection has stayed with me for the past month and half or so, it has gotten a lot better and some days it seems gone. I feel like I've continued to improve in all areas.

Today, I still have pain in my shoulder and in my knee. I still have a long way to go, but overall, I'm dramatically better than when I started Lyme-N and I'm continuing to improve. I feel like I can lead an almost normal life now.

Did the Lyme-N do what it's supposed to? I don't know. I know that I improved quite a lot while on Lyme-N. My Dr. told me that the Lyme-N did it's job and now I may continue cycle through symptoms for a while. I wasn't feeling like I was doing as well as my Dr. described so I started the Vital Plan Restore Kit. I think that Vital Plan might take me the rest of the way to full health.

I submitted my follow up saliva sample but I haven't gotten the results back yet. I'm not placing very much weight on this test. I think it's probably great for letting you know if you have spirochetes, but it can only tell you if they are in your saliva. They hide throughout your body so to me, a negative result is not conclusive. That would be better than a positive test, but that about it.

My insomnia is gone. My fatigue is gone. Many of my pains are gone. I feel that I'm healing. My mood is dramatically better and I can live my life again!

My own discovery of Lyme allowed me to realize that my mother has had Lyme for possibly over 20 years and that my son has had Lyme for 5 years. My mother is going right to Vital Plan because Lyme-N is too expensive. She is just starting now so I have no results to share. My son is on antibiotics because his Dr. think this is best for him.

I've read several books and searched the web quite a lot during this time. I found "Unlocking Lyme" by Dr. Rawls at Vital Plan to be probably the best information that I've read. I'm in no way affiliated with Vital Plan. I'm only sharing this information because it was helpful to me and I hope that my experiences might help others.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 9/2/2017 12:20 PM (GMT -6)   
Thanks for the update.

You did 30 days of doxy end of March and started the Lyme-N May 1st.
it's possible that your improvements from the doxy were still happening for a month or two.
it's difficult (as you seem to be saying) - what your improvements are from - doxy, lyme-N, Rawls, or a combination of all three. (probably all three?)

The problem with Dr. Rawl's - is the co-infections - I haven't seen anything that totally covers Bartonella and Babesia - unless I'm missing something?

And...we do know that lyme rarely travels alone (if ever)

HLymer - I hope you continue to improve and are fully healed soon!
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 : 13
   Posted 11/18/2017 10:26 AM (GMT -6)   
Hey all,

It's been a while since my last update. It is now the 5-6 month mark after having completed the Lyme-N treatment. And I have some great news. Most of my symptoms have improved.

Most noticeably, my physical fatigue and general malaise has improved to the point where I was able to pick up a few side jobs (light stuff like petsitting and helping organize/sort). I would not have been able to do that stuff before Lyme-N. It's not all great, I've pushed myself a bit too hard and crashed a bit... but recovered after a few days. I imagine it will take time to build up my stamina (as well as continue to improve from adrenal fatigue etc.). On good days, I feel up to doing a part time job... but crashing from doing too much gives me pause for now.

Mental fatigue and brain fog seem to be improving slower, but noticeably. I read my first book in 5 years this past month. Life is a bit easier to enjoy and less overwhelming as well.

So, that has been my experience so far. I am beginning to think that Lyme-N might be helping out after all... although a bit more time will tell for sure. My doctor said that it would probably take around 1 year to recover but I'd probably start feeling noticeably better by fall (halfway). So that estimate seems to be on track.

Lwnsmld13
New Member


Date Joined Oct 2017
Total Posts : 15
   Posted 4/12/2018 3:32 PM (GMT -6)   
Kraavdran said...
Hey all,

It's been a while since my last update. It is now the 5-6 month mark after having completed the Lyme-N treatment. And I have some great news. Most of my symptoms have improved.

Most noticeably, my physical fatigue and general malaise has improved to the point where I was able to pick up a few side jobs (light stuff like petsitting and helping organize/sort). I would not have been able to do that stuff before Lyme-N. It's not all great, I've pushed myself a bit too hard and crashed a bit... but recovered after a few days. I imagine it will take time to build up my stamina (as well as continue to improve from adrenal fatigue etc.). On good days, I feel up to doing a part time job... but crashing from doing too much gives me pause for now.

Mental fatigue and brain fog seem to be improving slower, but noticeably. I read my first book in 5 years this past month. Life is a bit easier to enjoy and less overwhelming as well.

So, that has been my experience so far. I am beginning to think that Lyme-N might be helping out after all... although a bit more time will tell for sure. My doctor said that it would probably take around 1 year to recover but I'd probably start feeling noticeably better by fall (halfway). So that estimate seems to be on track.



Kraavdran,

How are you doing now?

I'm intrigued by Lyme N but because of the expense need to research. smile

Kraavdran
New Member


Date Joined Apr 2017
Total Posts : 13
   Posted 4/12/2018 5:02 PM (GMT -6)   
Hey,

Long story: It has certainly been a while since my last update. Not much is new right now. I tend to look at my progress in terms of my fatigue levels. The past month or two, I've felt like I've been on the decline. This could be due to several factors (season change, pollen/allergies, and being overly zealous in ramping up my exercise for a week or so). But I acknowledge that it could very well be that Lyme-N did not "cure" me. I understand that recovery from the later stages of adrenal fatigue (caused by Lyme) takes a while, but being near the 1 year mark without being able to work (or even do the stuff I want to do) is quite discouraging. At the same time, I am not sure what to make of the time I was feeling noticeably better. [edit: I should note that I am still able to do more prior to Lyme-N... just not as much as I was or as much as I want]

Short story: I am not feeling better enough to recommend Lyme-N. Especially because of the expense and lack of dramatic improvement after 10ish months. However, I am still (trying to remain) hopeful and will surely update with any news.

Post Edited (Kraavdran) : 4/12/2018 4:39:03 PM (GMT-6)


Cosmo245
New Member


Date Joined Jul 2018
Total Posts : 1
   Posted 7/5/2018 5:40 PM (GMT -6)   
I am new here. My teenage son was diagnosed with Lyme early this spring. Started with doxy and got a bad herx reaction. We decided to stop it after 10 days. Switched to Lyme-N. He has been on it for about 45 days. He had tremendous ankle, knee and hip pain when he started and missed most of his 4th quarter of school. He still has some rough days but after 30 days on Lyme-N he had tremendous improvement. Still in the process but tremendously encouraged!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 7/5/2018 5:53 PM (GMT -6)   
Hi Cosmo245 - welcome to our community.

Well, I do hope that the Lyme-N is what's helping your son.

I don't think there have been many successes using it....it's not one of the more popular non-pharma treatments.


Let us know how he progresses...an update would be helpful.
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
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