Neurotransmitters and lyme

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Krimpet 🍔
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   Posted 5/17/2016 4:21 PM (GMT -6)   
So in most instances the HPA axis is effected in Lyme which subsequently effects our neurotransmitters. So here is my question. Do you get your neurotransmitters tested and supplement accordingly while healing from Lyme and co-infections OR do you just treat the Lyme and assume that the neurotransmitters will balance out? I'm interested in knowing how many of us actually do this testing and follow-up with recommendations?

PeteZa
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   Posted 5/17/2016 5:09 PM (GMT -6)   
I just treated and did not test.
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Krimpet 🍔
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   Posted 5/17/2016 5:30 PM (GMT -6)   
How did you know how to treat without testing? For example if Gaba or dopamine was low/high? Or do you mean you just treated the Lyme?

Pirouette
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   Posted 5/17/2016 5:51 PM (GMT -6)   
Hooooboy. This is a loaded question.

Before I knew I had lyme & co I had been seeing a naturopath because of severe GI issues and what turned out to be thyroid issues and exhaustion and other issues that were actually tied to lyme.

We did all kinds of testing for thyroid, adrenals, neurotransmitters, yeast/fungus, gut bacteria. The test results were all bad and her dx was that STRESS destroyed my gut and that created adrenal problems and neurotransmitter imbalances and thyroid issues.......

Well, I now know better. I now know I have lyme & co but I also learned I had pre-existing issues that made me more susceptible to lyme & co, y/f, etc.

I think the testing is very important, if you can spend the money AND if you have the means to do something about the results. I don't think most NDs--certainly not MDs really understand what's going on with the neurotransmitter functions. If you get a really good ND I think they can work through the thyroid and adrenal issues pretty well. And none of this means a whole lot if you don't have good gut health in place, too.

The best neurotransmitter test is a 24 hr saliva test (where you spit saliva into a tiny vial 4 times/day) and also includes a 2nd pee-of-the-day urine sample. The results include about a dozen neurotransmitter levels and your level within a range. My initial test showed that ALL (except 1 I think) were off-the-scale too high or low. My ND had me supplement with all kinds of expensive stuff and the next time we tested most everything had shifted to the opposite end of the scale. Then we adjusted supplementation and it kept happening. Clearly, she wasn't working with all the necessary information to help me balance my neurotransmitter function.

I later found out why--I have DNA mutations that affect neurotransmitter function. How and what and why, etc... I don't know because at this point I got pretty frustrated, not knowing how to do this on my own and not trusting others. I found a specialist near me I'm going to try when my treatment settles down.

But back to your question -
I think the lyme & co can cause imbalances in all of these body systems (HPA, gut, immune, neurotransmitter) and once there is a mechanism malfunctioning, the other connected symptoms are more easily disrupted, since they are all interconnected and interdependent.

I think people have differing opinions on whether or not to solve the lyme & co infection first, then rebuild later... or do both simultaneously. There is also new talk that you should heal the body and the infection will take care of itself (this, I'm not sold on yet). I think if you can determine you have simple neurotransmitter issues, that you can try straightforward supplementation but I wouldn't do it without support (ND). And they likely won't do it without testing.

Hope this helps - let me know i I didn't quite answer your question!

-p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babs, positive for Bart, CDC-pos for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; 11/2014 IV port installed, started Rocephin; added vancomycin 3/2016
DETOX: Pinella/Burbur/Parsley/Milk thistle seed/Burdock root cocktail; japanese knotweed, L-5-MTHFR, LMN-V-II, probiotics

Krimpet 🍔
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   Posted 5/17/2016 6:55 PM (GMT -6)   
Thanks P. Yes that was quite an answer. Just as you, I am hearing different schools of thought on the "how to properly treat" all of these out of whack systems that are most notably affected by Lyme. I recently did a neurotransmitter test that showed as you state, " simple neurotransmitter issues".....so the question becomes leave it alone and heal the Lyme and co-infections and work on gut healing OR also include in a few other supplements to help with the small imbalances. For example, I started herbs last year in August for other issues (which I now know we're tied to Lyme and co's)... and also doing a lot of b vitamins and other supporting vitamins/minerals. Last year and until May of this year, I could barely sleep, however now my sleep has been greatly improved once I started with some herbs that apparently have been helping my Lyme and liver. That's why I ask the question regarding if you heal Lyme and co's do the other things such as neuros, thyroid, and everything else balance out. I guess it's hard to say. Perhaps treating simultaneously may help the healing processes since those functions aren't struggling? Perhaps it depends on how unbalanced those other things are. Who knows.

Pirouette
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   Posted 5/17/2016 6:59 PM (GMT -6)   
One thing I forgot to ask (and I apologize because this was kind of an obvious question I should have asked you) but are you experiencing symptoms that suggest neurotransmitter imbalances, or are you trying to cover all the bases since your test showed some issues?

-p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babs, positive for Bart, CDC-pos for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; 11/2014 IV port installed, started Rocephin; added vancomycin 3/2016
DETOX: Pinella/Burbur/Parsley/Milk thistle seed/Burdock root cocktail; japanese knotweed, L-5-MTHFR, LMN-V-II, probiotics

astroman
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   Posted 5/17/2016 10:01 PM (GMT -6)   
OR...........you go one step further and get your thyroid tested, which can be directly affected by lyme.

Low thyroid hormone has a reflection on everything in the body, including neurotransmitter production.

Krimpet 🍔
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   Posted 5/18/2016 5:53 AM (GMT -6)   
Quite honestly I would not know what the symptoms are for neurotransmitter issues. I always test my thyroid because I have to. I think that it gets complicated because there are symptoms of Lyme and co's, as well as links to thyroid/adrenals which also affects neuros. If you read a lot of posts you can ask the question as to whether the persons symptoms are Lyme, thyroid, or neuro. Such as anxiety, depression, or whatever. However what I do notice for a lot of posts is that the person often says, once I cleared up, "X", then that symptom went away. All I know is that I was fine until Lyme, co's, and EBV came into my life.

cmgnp
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Date Joined May 2016
Total Posts : 3
   Posted 5/18/2016 7:44 AM (GMT -6)   
Hi,
does anyone know of a lymes Dr or clinic on Long Island , my brother was recently diagnosed with ALS but want to have him checked for Lymes ...
Thank You in advance
cmgnp

Post Edited By Moderator (Traveler) : 5/18/2016 9:12:11 AM (GMT-6)


Denikeef
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Date Joined Aug 2015
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   Posted 5/18/2016 8:00 AM (GMT -6)   
Hi cmgnp, I was just observing what was being said here and saw your question! You will want to start a new post with "Need LLMD on Long Island" so everyone will see it! Good luck!
Tested Igenix positive for Lyme March 2016.
Lyme symptoms for possibly 40+ years but severe in the last 5 after traumas to the system.
Currently treating with Buhner's Protocol for Lyme and Bart while waiting for a LLMD visit.

Traveler
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Date Joined May 2007
Total Posts : 36310
   Posted 5/18/2016 9:12 AM (GMT -6)   
Hi Cmgnp,
I posted to you in the other thread you posted in and explained about why I'm editing out your email: www.healingwell.com/community/default.aspx?f=30&m=2654585&g=3637845#m3637845
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)

Pirouette
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Date Joined Mar 2014
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   Posted 5/18/2016 12:26 PM (GMT -6)   
Krimpet -
What kind of saliva test did you do and what were the results?

My saliva test was for neurotransmitters and other levels including at least 12 different hormones/chemicals. The test also included a recommendation for what to supplement for each level that was out of whack (which for me, was very daunting because it was over a dozen remedies and a few affected how the others were treated...plus none of it worked, anyway). So I'm curious what kind of testing you had done and what the results were.

Krimpet said...
Quite honestly I would not know what the symptoms are for neurotransmitter issues.


Symptoms and the result of symptoms can include agitation, "lyme rage", depression, anxiety, nervousness, lack of energy, mood swings, hyperactivity, poor concentration, ADHD, panic, impulsive behavior, obsess-compulsive disorder, neuroses, learning issues, sleeping issues, etc.

Krimpet said...
I think that it gets complicated because there are symptoms of Lyme and co's, as well as links to thyroid/adrenals which also affects neuros. If you read a lot of posts you can ask the question as to whether the persons symptoms are Lyme, thyroid, or neuro. Such as anxiety, depression, or whatever. However what I do notice for a lot of posts is that the person often says, once I cleared up, "X", then that symptom went away. All I know is that I was fine until Lyme, co's, and EBV came into my life.


The lyme & co and other infections or chemical imbalances or gut problems or HPA issues---all can cause neurotransmitter malfunctions and sometimes they cause the same malfunctions. This is an awkward example (sorry) but in other words, lyme won't likely start stirring up cortisol by acting directly on the cortisol. It's more likely that the lyme taxes the immune system, which causes stress in the GI (which can include malabsorption or damage) and stress triggers the adrenals, which respond by jumping into over-drive, which then in turn cause cortisol to be over- or under-produced.

So, by treating lyme, or treating adrenals, or both you can affect the cortisol imbalance. That's why sometimes treating lyme successfully, for instance, can also clear up other issues because the immune system is no longer stressed out and causing other body systems to malfunction. Because these systems are interconnected.

I think if you are not experiencing severe neurotransmitter issues, and you feel your thyroid is functioning well (which I would be sure about - there is a lot of misinformation about thyroid testing so if you're not sure I'd start a new thread) I would not try to do much while you're in lyme & co treatment. I'd wait until new symptoms show up and then target them specifically.

Hope this is not too confusing! Let us know if you still have q's -

-p

1000Daisies
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   Posted 5/21/2016 7:26 AM (GMT -6)   
Good questions! I saw your post earlier and am finally coming back to it (busy week).

This has been on my mind too. Kid#2 is doing very poorly (very sick - serious relapse over winter). I just started seeing a ND for another opinion/help for his issues. Ironically, I just had Kid#2 tested for neurotransmitters (among other things too). It was an urine test. His neurotransmitters were definitely out of wack (most were very low), which could help explain why he feels so miserable.
My ND said a few interesting things. He believes the lymes and company isn't the biggest factor at this point. He believes he has post-lymes issues. In his opinion, he believes that for some people, the neurotransmitters are out of wack and reset automatically when healing. But for some people, they are "stuck" and are unable to reset to balanced. He said that sometimes it's important to look at your grandparent's mental health (depression, anxiety, etc), as that may be a better indicator (sometimes) than looking at your parents (he feels that it can skip a generation). Given my son's grandparent health, the ND feels that my son may be genetically more prone to being off, so thus, he's not able to reset his neurotransmitters as easily as somebody else. In addition, he feels he has some small SIBO (but not yeast), which would be a factor as well in his neurotransmitter imbalance. His food sensitivities test came back too.

So, long story somewhat short - Kid#2 just started taking supplements to "help" his neurotransmitters (but this is really just a Band-Aid approach) and special diet (gluten/dairy/egg-free) to help restore his health in his intestinal track.

It's too early to tell on his supplements specific to balancing the neurotransmitters. The ND said it takes months. It seems rather complex to balance the neurotransmitters. But his sleep seems improved this week so far (except for one bad night).

The diet is extremely difficult in a child. It's so super restrictive.

We tried supplements for my Kid#1 for helping neurotransmitters, but they didn't seem to help at all. However, this ND is new to us, and he seems to know his stuff. But I'm really cautious about whether he still has lymes and company. I think it's something a lot of us struggle with - what is caused by lymes and coinfections versus what is caused from the damage that lymes and company have done.

Sorry for the ramblings. I just find it helpful to share experiences with others so perhaps this may help each other.

Krimpet 🍔
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Date Joined Apr 2016
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   Posted 5/21/2016 8:24 AM (GMT -6)   
Thanks 1000. This is really good info.


P....I will answer your questions as soon as I receive my test results. I have yet to meet with my doctor about these and other test results. I will say this though...my doctor initially said that he felt as though my gaba may be a little low and gave me a natural supplement to take by apex energetic so as needed. My main symptoms are early morning (anxiety). So we aren't talking exceptionally low. I was taking it as needed, perhaps 1/2 capsule once or twice a week, then nothing needed. Now that I've kicked up my protocol it seems as though I need to begin the supplements as needed again. My current test was through Sansco, however I did another test that tests all those amino acids that contribute to neurotransmitter synthesis. Haven't gotten the.se back yet, either.

So i do think these levels change as the infections change (get weaker, stronger).

Pirouette
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Date Joined Mar 2014
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   Posted 5/21/2016 12:50 PM (GMT -6)   
Absolutely - treatment is stressful to our bodies. I wish there was a less stressful way to heal and I do think that some people CAN heal lyme & co by focusing entirely on building up their body systems, rather than targeting the infection. But for many of us I don't think this is a good strategy and the impact of the meds and herbs we're taking and what they're killing is just darn stressful.

Will be very interesting to see what the amino acids tests reveal, too.

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in 2000; Clinically dx Mar'14 w/ Babs, + for Bart, CDC + for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; Nov'14 IV port installed-started Rocephin; added vancomycin Mar'16
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock root; cholestyramine / jap. knotweed L-5-MTHFR LMN-V-II probiotic

Pirouette
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   Posted 5/21/2016 1:00 PM (GMT -6)   
1000Daisies -

I am so sorry you and your little ones are struggling. But I agree with you - your ND does sound enlightened and educated. I love that he's looking into neurotransmitter function and gut health--they are very much in sync.

I did want to share that neurotransmitter function can be genetic (I'm not sure about the "skipping generation" he mentioned as I think it's just more of a DNA mutation situation that can affect MANY different neurotransmitter functions that can be naturally imbalanced.) So my suggestion was going to be to have his DNA analyzed.

It can be done at 23andme.com or other companies - $199 for a kit - you spit into a small vial and mail it back, in return you receive a text file that you then send to online research organizations - most charge a nominal fee, say $35-50 to have it analyzed and provide you a report for what categories of mutations you have and what they might mean. And then your ND can help you supplement to support them.

The reason I suggest the DNA analysis is that it helps pinpoint the issues - rather than experimenting with various supplements. When I tested mine were nearly all VERY off and I spent $10k with my ND over a couple of years trying to balance them---but we didn't know about my mutations at the time. Had we known, I think we would have been more successful and I wouldn't have gone broke and crazy in the meantime with all my symptoms... the imbalances can really exacerbate an already stressed-out body.

Just a suggestion - I 'm sure additional tests and costs are not easy to manage. Please let me know if you'd like more info.

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in 2000; Clinically dx Mar'14 w/ Babs, + for Bart, CDC + for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; Nov'14 IV port installed-started Rocephin; added vancomycin Mar'16
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock root; cholestyramine / jap. knotweed L-5-MTHFR LMN-V-II probiotic

LymeDocSearch
Regular Member


Date Joined Apr 2017
Total Posts : 47
   Posted 1/15/2018 3:23 PM (GMT -6)   
Has anyone used the SOTA Bio-Tuner and does it balance out Neurotransmitters? I found an online test which was created by a doctor and mine are all unbalanced, especially Serotonin, which I figured since I have problems sleeping and my mind races often when trying to sleep.

Girlie
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Date Joined May 2014
Total Posts : 32672
   Posted 1/16/2018 1:37 AM (GMT -6)   
LymeDocSearch - I haven't tried the SOTA Bio-Tuner - is that the same as the binaural beats?


/www.youtube.com/watch?v=fKEzM_o6ed8&list=RDfKEzM_o6ed8


I've thought that maybe I need to retrain my brain...it's been on high alert/panic mode for so long now.
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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