Difficulty Breathing - CNS dysfunction - Very Concerned

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Justin01
New Member


Date Joined Jan 2018
Total Posts : 8
   Posted 2/13/2018 6:31 PM (GMT -7)   
Does anyone have CNS symptoms where the Vagus nerve is most likely the specific part of the body that was/is affected? My heart races at times, I have difficulty breathing, I developed acid reflux, and my throat feels like it's closing up at times, even when I don't have acid reflux. I also get lightheartedness, head pressure at times, and my blood pressure elevates at times too, among other things.

The most concerning thing is the difficulty breathing. I realized that over the last 2 months, the Lyme/coinfection(s) caused me to have an internal shakiness and anxiety. I had to go on anti-anxiety medication. It helps somewhat with the breathing issue and the acid reflux, but I pray that I can heal from this without needing to stay on this medication. My issue has been that I have been sensitive to some of the antibiotics that I have been put on and needed to stop them. I even became sensitive to some of the natural herbs/etc. Still haven't found an antibiotic that I can take consistently. I'm never sure if I am reacting in an allergic way to the medication, or if it's just a Herx reaction, especially when it involves my breathing issue. No doctor seems to be able to definitively tell me. I am very concerned, scared, and I pray to God everyday to help me. Any helping words, ideas, and shared similar experiences with a happy ending is much appreciated. Thank you.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 819
   Posted 2/13/2018 6:55 PM (GMT -7)   
Hi, Justin!

Glad you're here. I'm so sorry you're experiencing these worrisome symptoms. I've had those symptoms before, too. At times, they were pretty scary. The worst bout I had with trouble breathing made me feel like I had asthma, but I was tested and checked out by a pulmonologist and it wasn't asthma. It took another year and a half before I finally was tested and found to have Lyme.

I am very sensitive, too, and could not tolerate antibiotics. It made my symptoms so much worse. After learning more and researching my options, I decided to try to treat myself using Stephen Buhner's herbal protocols. I started in June. I feel I've made some progress, but it's been very up and down for me. I'm very sensitive to the herbs, too, so I'm still at tiny doses of the herbs that kill. I'm sticking with it, though.

I'll be praying for you. There is hope and help. You're not in this alone. There is no one right way to treat these infections, so don't think there's no way out if you can't tolerate antibiotics.

Here are some encouraging sites that helped me a lot when I first started looking for answers.

realfoodrebel.com/success-with-buhners-protocol-for-lyme/

/rawlsmd.com/health-articles/my-chronic-lyme-disease-journey

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 716
   Posted 2/13/2018 7:42 PM (GMT -7)   
Hello, Justin01:

Welcome to the forum. I'm sorry you had to find us, but we're glad you did.

If you haven't already done so, you may wish to read the following article:

New To Lyme? Start Here
/www.healingwell.com/community/default.aspx?f=30&m=1606610

This article is also posted on the main page of the forum. It's pinned just above all the various posts.

Anyway, I've also had the symptoms you mentioned, as well as many more. about five years before I was even bitten by a tick, I saw a Naturopath in Seattle for various issues I was having, such as fatigue, dizziness, pressure in my head, etc. After scanning my intake forms, asking me questions, and reviewing a stack of old lab results and Doctors' reports, she concluded that my Vagus Nerve was inflamed.

Years later, after being bitten by a tick that I could actually confirm, the aforementioned symptoms returned/worsened and I started experiencing a long list of other weird things that would come-and-go, such as air hunger, breathlessness, rapid heartbeat, feeling faint, tremors, blurry vision, anxiety, weak pulse, hypersensitivity to stimuli such as bright lights and loud noise, nervousness, and on and on.

I still have a few things that I'm dealing with, but many things have improved. It's taken time, and, in my case, many Doctor visits (ER, Primary Care, and Specialists) and tests, to settle my mind that nothing structural (e.g. my heart) is wrong.

Some people have reported success in using a limbic system retraining program called "Dynamic Neural Retraining System" (DNRS), if you wish to learn more about it.

/RetrainingTheBrain.com

Also be sure to click the tab for "Success Stories" on their site.

Best Wishes,

The Dude

jackinthebox
Regular Member


Date Joined Oct 2017
Total Posts : 63
   Posted 2/14/2018 9:20 AM (GMT -7)   
Hi Justin,

I didn't really have trouble breathing, but my vagus nerve did go haywire when I was at my sickest a few months. That's how I knew I was really sick and not imagining phantom pains; lightheadedness, shakiness, dizziness. Heart racing occasionally and chest pain; I definitley thought I was having heart problems for a while, but a few Urgent Care and PCP visits reassured me it wasn't. Sometimes I would get all sorts of weird sensations in my chest and throat area. I also developed some heartburn after being on antibiotics for a while. So you're definitely not alone.

I don't really know what could help other than treatment, and time. Know that with Lyme, things often (at least in my experience, everybody is different) go away with time, then flare up and come back but less severe, and then go away again.

What kind of reaction do you have to the antibiotics?

I was terrified of allergies too (I hate putting drugs in my body - besides caffeine, I love caffeine) but most of it was just typical herx type reactions.

Justin01
New Member


Date Joined Jan 2018
Total Posts : 8
   Posted 2/14/2018 5:34 PM (GMT -7)   
WalkingbyFaith said...
Hi, Justin!

Glad you're here. I'm so sorry you're experiencing these worrisome symptoms. I've had those symptoms before, too. At times, they were pretty scary. The worst bout I had with trouble breathing made me feel like I had asthma, but I was tested and checked out by a pulmonologist and it wasn't asthma. It took another year and a half before I finally was tested and found to have Lyme.

I am very sensitive, too, and could not tolerate antibiotics. It made my symptoms so much worse. After learning more and researching my options, I decided to try to treat myself using Stephen Buhner's herbal protocols. I started in June. I feel I've made some progress, but it's been very up and down for me. I'm very sensitive to the herbs, too, so I'm still at tiny doses of the herbs that kill. I'm sticking with it, though.

I'll be praying for you. There is hope and help. You're not in this alone. There is no one right way to treat these infections, so don't think there's no way out if you can't tolerate antibiotics.

Here are some encouraging sites that helped me a lot when I first started looking for answers.

realfoodrebel.com/success-with-buhners-protocol-for-lyme/

/rawlsmd.com/health-articles/my-chronic-lyme-disease-journey



Thank you so much for the response and information.

Justin01
New Member


Date Joined Jan 2018
Total Posts : 8
   Posted 2/14/2018 5:40 PM (GMT -7)   
Thank you all so much for the response and information.

Also, has anyone done the IGeneX tests?

It seems that I tested just positive for basically every test. For example, if the cutoff b/t a negative or positive test is <40 or <20, I always seem to be right at 40 or 20 respectively. Is this possible? I don't remember having any of the symptoms that most of these infections list, with exception to Lyme disease and some Bartenolla. All my conventional testing from Quest are negative of course, with exception to Lyme disease.

Anyone have any thoughts or experience with these test from this lab?

Thank you.

BabsBunny
Regular Member


Date Joined Mar 2017
Total Posts : 461
   Posted 2/14/2018 7:51 PM (GMT -7)   
Justin01 said...
Does anyone have CNS symptoms where the Vagus nerve is most likely the specific part of the body that was/is affected? My heart races at times, I have difficulty breathing, I developed acid reflux, and my throat feels like it's closing up at times, even when I don't have acid reflux. I also get lightheartedness, head pressure at times, and my blood pressure elevates at times too, among other things.

The most concerning thing is the difficulty breathing. I realized that over the last 2 months, the Lyme/coinfection(s) caused me to have an internal shakiness and anxiety. I had to go on anti-anxiety medication. It helps somewhat with the breathing issue and the acid reflux, but I pray that I can heal from this without needing to stay on this medication. My issue has been that I have been sensitive to some of the antibiotics that I have been put on and needed to stop them. I even became sensitive to some of the natural herbs/etc. Still haven't found an antibiotic that I can take consistently. I'm never sure if I am reacting in an allergic way to the medication, or if it's just a Herx reaction, especially when it involves my breathing issue. No doctor seems to be able to definitively tell me. I am very concerned, scared, and I pray to God everyday to help me. Any helping words, ideas, and shared similar experiences with a happy ending is much appreciated. Thank you.


You just described my week, word for word.

It’s my Babesia acting up. I have refused psychiatric drugs but finally had to give into lorazepam (.25 mg) because the anxiety was killing me. I’m still getting vibrations and heart palps but at least it’s not freaking me out so much and I can actually sleep. It’s Babesia. Dr not concerned with my heart, last year’s EKG was normal.

My problems with meds involved their use of corn-derived substances. Starch, xanthan gum, dextrose, etc. they can be compounded, but that gets so expensive. I’m just switching thru abx to see what I can stay on the longest.

I didn’t get iGenex other than WB but I have noticed many lab tests say “<20” is normal and my results are “<20”. Anyone normal is given a “<20” result. (Yours might be different, just telling you what I’ve noticed)
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

BabsBunny
Regular Member


Date Joined Mar 2017
Total Posts : 461
   Posted 2/14/2018 7:59 PM (GMT -7)   
As far as allergies and reflux- we are looking at a mast cell activation disorder. My histamine tests did not come back high, and I don’t have the skin writing phenomenon, but my reactions seems to be reflux, stomach and brain related. I went on a low-histamine diet, and started Quercetin and bromelain as mast cell stabilizers (my MD would have me on H1 and H2 blockers - Claritin, Pepcid, singulair- high doses all at once, so I went a naturopathic route). It has helped my reflux and swallowing problem, and the insane itch in my heel has finally gone away. I ran out of Quercetin a few days and they came back! I’m back on it and cleared. It’s crazy!
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Justin01
New Member


Date Joined Jan 2018
Total Posts : 8
   Posted 2/15/2018 10:46 AM (GMT -7)   
BabsBunny said...
As far as allergies and reflux- we are looking at a mast cell activation disorder. My histamine tests did not come back high, and I don’t have the skin writing phenomenon, but my reactions seems to be reflux, stomach and brain related. I went on a low-histamine diet, and started Quercetin and bromelain as mast cell stabilizers (my MD would have me on H1 and H2 blockers - Claritin, Pepcid, singulair- high doses all at once, so I went a naturopathic route). It has helped my reflux and swallowing problem, and the insane itch in my heel has finally gone away. I ran out of Quercetin a few days and they came back! I’m back on it and cleared. It’s crazy!


Thanks for your response BAbsBunny. So, you didn't take the antihistamines? Just the natural supplements, such as Quercetin? My issue is that some of the supplements can make the acid reflux worse. Although, the Klonopin helps with that I believe because it is cause by the parasympathetic system (rest and digest) being dysfunctional. The anxiety meds calm down the sympathetic system, hence slowing the heart, reducing the blood pressure, allowing the digestive system to work properly, and reducing the anxiety.

My biggest concern right now is the breathing difficulty, as well as being able to tolerate the antibiotics. Separate note: I believe fish oil will help with reducing inflammation as well, but it's important not to take too much because it can also shut down the healthy immune response again Lyme and the coinfections.

As for me, I'm not sure that my breathing issue is related to Babesiosis, due to my red blood cells being normal (actually high normal). I believe I read Bartonella can cause breathing issues, and so can Lyme disease if they affect the central nervous system. I did test positive for the F.I.S.H. test for bartonella. I'm hoping that I can tolerate doxycycline this time around due to its ability to fight against it, as well as all the other pathogens. My issue with doxy is that when I took it in the past, it caused extreme pressure in my head, eyes, and sometimes ears. I was concerned about intracranial pressure, which can be very dangerous, but this feeling started after only taking 1 capsule. My LLMD and my neurologist both said they never heard that happen from taking only 1 capsule. It usually takes a while being on it for this to happen. Things like this drive me nuts because them 'thinking' that it doesn't fit in textbook information doesn't mean that it can't happen. Then, if you react to a few other different antibiotics, these doctors start to blame you and insinuate that it's in your head. That also is annoying. I've never had these issues before, and I'm not manifesting it due to something that I'm doing 'in my head.'

You pay these doctors big money, and then when you don't fit in their perfect box of treatments, it seems like they give up and don't have answers for you. It's very frustrating.

I learned that you have to find the additional help on your own, such as finding a good allergist, and even a facility that specializes in allergy and medications desensitizing procedures if you really need certain antibiotics to treat your specific diseased condition. The facility should have an ENT available as well. Most of these places are based in hospitals, especially if they do desensitizing procedures, which is usually done in the ICU. Wish there were health facilities that had all these doctors available to help with allergy/sensitivity issues to meds in every state. It would make things so much easier.

BabsBunny
Regular Member


Date Joined Mar 2017
Total Posts : 461
   Posted 2/15/2018 3:00 PM (GMT -7)   
Interesting note, Klonopin is also used in mast cell disorder:
http://www.mastattack.org/2014/10/mcas-treatment/

“Benzodiazepines are often helpful in MCAS, due both to its action on mast cells and also directly on organs, particularly GI organs. Lorazepam, clonazepam and alprazolam are preferred due to their shorter window of action. All can be dosed beginning at 0.25mg every 12 hours, increasing by 0.25mg twice daily every week.”
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 275
   Posted 2/15/2018 6:54 PM (GMT -7)   
Justin01 said...
My issue with doxy is that when I took it in the past, it caused extreme pressure in my head, eyes, and sometimes ears. I was concerned about intracranial pressure, which can be very dangerous, but this feeling started after only taking 1 capsule. My LLMD and my neurologist both said they never heard that happen from taking only 1 capsule. It usually takes a while being on it for this to happen.


I felt head pressure right away from doxy too. It was scary, but it went away quickly and I was able to take doxy without any problems for months. Maybe try a few more days? I hate trying new medicines too.

Justin01
New Member


Date Joined Jan 2018
Total Posts : 8
   Posted 2/16/2018 11:14 AM (GMT -7)   
BabsBunny said...
Interesting note, Klonopin is also used in mast cell disorder:
http://www.mastattack.org/2014/10/mcas-treatment/

“Benzodiazepines are often helpful in MCAS, due both to its action on mast cells and also directly on organs, particularly GI organs. Lorazepam, clonazepam and alprazolam are preferred due to their shorter window of action. All can be dosed beginning at 0.25mg every 12 hours, increasing by 0.25mg twice daily every week.”



That's exactly correct, but the longer acting ones, such as Clonzepam (klonopin) and Lorazepam, from what I was informed are preferred due to less ups and downs as they act longer. They basically down-regulate the sympathetic system, which is malfunctioning in some people due to Lyme disease and Bartonella, among others. It's a bit different than what happens I believe in Babesiosis infections (different type of air hunger). If you have high anxiety, then it most likely is Bartonella combined with Lyme disease, although Babesiosis can produce it too, but there would be other signs of that infection, such as night sweats, among others.

Separate note: the longer acting benzos, such as Clonzepam and Lorazepam usually are prescribed at a higher dose then say Alprazolam. It's usually double the dose due to them being slightly weaker as I believe because they are longer acting (gets diluted as it is stretched out over a longer time period). Need to speak with the prescribing doctor about this topic for more information.

It really does stink needing these meds since they are addicting, but if you need them to survive will you treat, and to tolerate the treatment antibiotics, then so be it. Have to weigh out the good with the bad. Just have to keep the faith and pray (if that's what you believe).

Justin01
New Member


Date Joined Jan 2018
Total Posts : 8
   Posted 2/16/2018 11:20 AM (GMT -7)   
I agree Dahlias,

I noticed that the pressure went away the last two times that I took it, but it may be due to me taking Klonopin this time around, though I'm not sure. I decided to not take it for a few days because my neurologist had me due a spinal tap (don't ask me why I allowed this) and I want to make sure that the puncture wound has at least three days to heal before taking the doxycycline again, just in case. I'll try starting off slow with half the dose, and build up over a week or two to the full dose. I pray to God that this works. Thank you all for your information and encouraging words. You all are Heaven sent.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 29505
   Posted 2/16/2018 11:40 AM (GMT -7)   
I'd be careful using the benzos on a daily basis....and in particular Ativan (lorazepam) - my father got dependent on them within a few weeks of daily use.

From what I've read, valium is safer. In fact valium can be used to taper off the ativan because it has a longer half-life.
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

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 268
   Posted 2/16/2018 12:16 PM (GMT -7)   
I have these issues, too and recently learned that it's a major histamine sensitivity. I was tested for MCAS and don't have it, but my doc said bartonella, lyme, babesia etc. can activate your mast cells without having MCAS per se. I'm not sure there's much we can do for it besides reducing histamine foods and treating the infections

Justin01
New Member


Date Joined Jan 2018
Total Posts : 8
   Posted 2/19/2018 6:59 PM (GMT -7)   
Girlie said...
I'd be careful using the benzos on a daily basis....and in particular Ativan (lorazepam) - my father got dependent on them within a few weeks of daily use.

From what I've read, valium is safer. In fact valium can be used to taper off the ativan because it has a longer half-life.


I hear you Girlie, but they are the only things that have allowed me to breathe properly. They also helped stop the acid reflux. My goal is to use them to be able to start on the antibiotic and pray that the antibiotic clears out enough of the pathogens to help return my breathing and digestive system back to normal. My doctor mentioned that the longer acting benzos are less addicting than say xanax, but who knows. I can't believe I'm even needing these things right now. Though, if it comes between breathing and not feeling like I can breathe, as well as not being able to eat due to acid reflux, well I don't know if I have much of a choice. Any suggestions? I'm not sure Valium is going to help much either.
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