Help with an overactive nervous system

[soxfan]

I really believe I have successfully treated Lyme and co-infections but am now left with a totally out of whack nervous system. My sympathetic nervous system is always turned way up and I simply can't calm down ever. I have lost the ability to relax. I always feel like my insides are going 100 mph even when I am sitting...laying down...etc. I try to keep going so I don't feel so terrible.
I never feel sleepy tired but just a deep fatigue which really has an huge impact on my daily life. Also when I am really feeling over stimulated the neuropathy and twitching in my calves also increases tremendously.

I am moving to NC in 10 days and of course that has had a huge impact on all this as well. I have tried so many supplements etc..to try and help with the over stimulation feeling but nothing really helps.

I finally have my sleep under control for the past year so I can't blame anything on lack of sleep because I now sleep quite well. If I could only find a solution to help with this it would make a huge difference. My doctor did try several things like seraphos...which made me feel drained and exhausted along with some menopause supplements which did the same.

Anyone else here have this as a huge problem? It causes so much tiredness all the time.

 

[Marco]

Hi there

That sounds very much like me. I don't have constant 'fatigue' ad such but I just can't relax at all (which gets worse as the day goes on) and keep going until I end up in a state of general collapse.

Sympathetic (as opposed to parasympathetic) over-activation is a consistent finding in a number of recent studies and one large study was able to objectively identify at least a sub-group of childhood CFS patients whose nervous system appeared over-activated. I blogged about the study here :

Type II - The ‘Wired and Tired’ Group

“their nervous system has an abnormal, hypersensitive reaction: a nervous state”.

http://www.cortjohnson.org/blog/201...deficits-present-in-chronic-fatigue-syndrome/

As to what to do I had a one-off success with Celebrex which completely abolished the wired and anxious feeling for a few hours but I couldn't repeat this effect (it was a very old box of Celebrex) so it could be a red herring.

I think @Hip has had some success in dealing with similar symptoms.

 

[maryb]

@soxfan
what about Be-Calm by holistic health, this is one I've been prescribed for excitotoxicity.

 

[Hip]

I think @Hip has had some success in dealing with similar symptoms.

Yes, my main problem was severe generalized anxiety disorder. But I found that my anxiety symptoms and the "wired" state of hyper-arousal and were interlinked, in that the drugs and supplements I successfully used to eliminate my anxiety also seemed to work for my "wired but tired" mental state.

The number one supplement that often has miraculous effects in people is N-acetyl-glucosamine (NAG), but I found many other supplements also very helpful. Full details of these in these threads:

Completely eliminated my severe anxiety symptoms with three supplements!

Non-Standard Anti-Anxiety Treatment

 

[vamah]

I have found tt GABA helps with those wired feelings.

 

[xrunner]

I never feel sleepy tired but just a deep fatigue which really has an huge impact on my daily life. Also when I am really feeling over stimulated the neuropathy and twitching in my calves also increases tremendously.

Anyone else here have this as a huge problem? It causes so much tiredness all the time.

I used to have that wired and tired feeling. It also affected my peripheral nerves which seemed to vibrate and that was very uncomfortable. But my sleep was also disturbed.
My symptoms went away completely after treatment for Bartonella and Borrelia. I think Bartonella was the main driver of those symptoms as it got significantly better after.

If you still suffer from neuropathy and muscles twitching your may want to double check your assumptions about Lyme especially with regard to Bartonella but other parasites often unindentified (which accompany Lyme) can also be a trigger of such symptoms, in fact antiparasitic treatment with Ivermectin also helped me quite a bit.
You may also want to check Dr Burrascano's document on Lyme where he describes typical of Bartonella when symptoms of the central nervous system are out of proportion to the others of Lyme disease. http://www.lymenet.org/BurrGuide200810.pdf

ps: you did not specify whether you're taking any supplements or meds which may contribute to overstimulation (a few made my symptoms worse).

 

[Ema]

I have found tt GABA helps with those wired feelings.

I was just reading in Dr Datis Kharrazian's brain book that GABA as taken in supplement form is too big of a molecule to cross the BBB. So if it does cross (i.e. you can feel it working), that is evidence of an impaired BBB right there. I thought that was an interesting way to test the integrity of the BBB.

 

[maryb]

I have found tt GABA helps with those wired feelings.

Gaba is in the Be-Calm, I haven't tried it yet though, just came in the post.

 

[maryb]

I was just reading in Dr Datis Kharrazian's brain book that GABA as taken in supplement form is too big of a molecule to cross the BBB. So if it does cross, that is evidence of an impaired BBB right there. I thought that was an interesting way to test the integrity of the BBB.

Yikes if it works???????????

 

[soxfan]

Yes Hip...that is what I meant! I will edit my post so It won't be confusing.

I was treated for Bartonella for a long time..just finished up in November again. I have taken Levaquin....plus another time combos of Rifampin/Minocycline...Rifampin/ Zithromax. I just am not sure to continue on with abx would be helpful. My doctor doesn't think so at this point so I am off everything.

I don't take any supplements except calcium and magnesium as well as Levoxyl for hypothyroid.

In the past I have taken Kavinace for years but not sure it was really helpful with the stimulation. I have also tried Klonopin at 1/2 mg. which helps me sleep but does not help the internal overstimulation.

I am going to try some of the supplements suggested as those are some I haven't tried yet. Thanks for the suggestions and the links to the information.

I really feel if I can somewhat control this problem I will be able to function so much better. The fatigue I feel is most likely from the 24/7 ramped up sympathetic (thanks hip) system which just won't shut down....Its one of the worse feelings ever....

The fatigue does get worse as the day goes on...I normally don't wake up with fatigue like I use to but I do wake up with my insides already racing...

Wanted to add then when I was first sick 9 years ago I DID NOT have this problem. I would say this probably developed slowly 3-4 years ago and continues to get worse. At first it wasn't all the time but now it is...

 

[xrunner]

@soxfan
Neither did I have a problem with my nervous system at the beginning of my illness. It started after doing another unrelated treatment but it got out of hand after a few months of starting the treatment for Lyme and I also developed MCS more or less at the same time.
My thoughts based on my personal journey is that, unless your Bartonella diagnosis was wrong, if you treat it successfully your nervous system should calm down. Without removing Bartonella, success against Borrelia/Lyme is more difficult. The fact that neuropathy is still an issue could be a clue in that respect.
The antibiotics you mentioned are quite effective against Bart. I could not do fluoroquinolones because they gave me tendonitis but I did the trio Minocycline-Zithro-Rifampin. The first round, for about three months did not seem to work but later when I added antibiofilm remedies it only took four weeks to significantly improve.
You may also want to research the effect of certain minerals, as some researchers reckon they may make it harder to resolve biofilm-forming pathogens. I did a lot of magnesium injections in prior years and that seemed to be true in my case.
The article in this link helped me quite a bit when I got to a point improvements were not coming through any longer.
http://www.townsendletter.com/July2009/ed_lyme0709.html
I think you're right in taking a pause after a prolonged treatment with abx. I used to take plenty of breaks in btw rounds which were never very long and that did not seem to negatively affect on the contrary they might have worked because they gave an opportunity to the microbes to come out from hiding before hitting them again. That's a theory anyhow. I wish you all the best.

 

[Hanna]

As to what to do I had a one-off success with Celebrex which completely abolished the wired and anxious feeling for a few hours but I couldn't repeat this effect (it was a very old box of Celebrex) so it could be a red herring.

@ Marco: Celebrex has been found in France to be a very dangerous product (cardiac side effects) - source : pharmacologic department of Toulouse University / Professor Jean-louis Montastruc.

 

[SickOfSickness]

I was just reading in Dr Datis Kharrazian's brain book that GABA as taken in supplement form is too big of a molecule to cross the BBB. So if it does cross (i.e. you can feel it working), that is evidence of an impaired BBB right there. I thought that was an interesting way to test the integrity of the BBB.

GABA has a strong effect on me and acts quickly. That's a bad thing?

 

[Ema]

Yikes if it works???????????

This is kind of old but summarizes what I heard:

The effect of Hashimoto’s on the blood-brain barrier
The microglia cells not only make up more than half of the total mass of the brain, but they also make up the blood-brain barrier, a thin barrier that lines the brain and allows necessary, nano-sized substances to pass through. The blood-brain barrier is important for keeping antigens (foreign invaders, such as viruses or bacteria) and environmental toxins out of the brain.

Unfortunately, the blood-brain barrier can develop “leaks” for a variety of reasons, including poor blood-sugar stability (particularly insulin resistance),(10) chronic stress,(11) chronic inflammation,(12) poor gut health, poor diet with unhealthy fats,(13) and unchecked autoimmune activity, such as Hashimoto’s disease (alcohol and high homocysteine are other recognized factors(14-16)). If you are familiar with leaky gut, as discussed in the book, then you’ll understand leaky brain, as both the gut and the brain are immune barriers vulnerable to the same problems.

When the blood-brain barrier develops leaks, bad guys get in, the microglial cells go nuts, and a whole lot of brain tissue gets chewed up. This creates inflammation, which in felt in some as “brain fog,” and leads to accelerated brain degeneration.

The Leaky Brain Challenge
How do you know if your blood-brain barrier is leaky? A simple and easy way to find out is to do Blood-Brain Barrier Challenge. To do this, simply take 1000 mg of straight GABA (not GABA precursors such as theanine).

GABA is a neurotransmitter synthesized in the brain and is responsible for calming or inhibiting over activity. Although some companies sell GABA supplements, the reality is the GABA molecule is too large to pass through an intact blood-brain barrier. The fact that this supplement sells so well is a testament to the integrity of the average American’s blood-brain barrier.

So, if several hours after taking 1000 mg of GABA, you feel calm, relaxed or sleepy, you know that GABA, a molecule too large to pass through the blood-brain barrier, has nevertheless made it into your brain and is performing its calming duties. This means your blood-brain barrier has become compromised and your brain is highly susceptible to the immune rampages I discussed above.

Some people, instead of feeling relaxed, will find GABA makes them feel more anxious or jittery. There are other reasons for this that will be discussed in my next book, however any reaction at all indicates a leaky brain barrier.

If you felt no change after taking GABA, that is a good sign that your blood-brain barrier is intact and functioning well. (For accurate results, be sure to take this test during the day and not at bedtime.)

What to do about a leaky brain barrier
Addressing the areas that helped cause a permeable blood-brain barrier is the best place to start if you want to restore integrity. First make sure your diet is strictly void of gluten. Then do an Elimination/Provocation diet, as explained in my book, to determine whether other foods, such as dairy or eggs, are also provoking the immune system.

Continue on with the other strategies explained in the book: Balancing blood sugar, addressing gut health and gut infections, and supporting adrenal health so your adrenal hormones are neither too high or too low. All of these will help quench inflammation, a notorious saboteur of brain health. Also, ask your practitioner about the supplements I have created specifically for blood-brain barrier integrity, brain inflammation and increased blood flow to the brain (which will be discussed in my next book). Other strategies include enhancing the liver’s methylation pathway (Chapter Eight of the thyroid book) and supplementing with alpha-lipoic acid.

http://thyroidbook.com/blog/tag/kharrazian/

 

[maryb]

@Ema
Thanks - very interesting....I've just put it on my favourites to read when I feel a little better.

 

[soxfan]

xrunner- I think the whole nervous system whack out started when my dad become ill and subsequently passed away a few months later. I was so stressed and anxious because he was in such pain and it was a horrible thing to watch. I am not sure why it has become much worse since he died in 2009.
I am beginning to think that I just have permanent damage now from the Lyme and or Bartonella. I was treated extensively for Lyme which included Bicillin injections and 6 months of Rocephin. I do think at least think the Lyme is resolved since I really don't seem to have any of the major Lyme symptoms..

I am moving from NH to NC so if I feel like I still need Bartonella treatment I will have to find another doctor. I have been tested many times and it is always negative although I know the testing is junk. My Lyme doctor here feels that abx would have no more impact on my symptoms and I need to try other methods which I do agree with.

I really can't do much about it now since I am in the middle of a move so will have to explore options once I get settled. I really appreciate all your thoughts about this symptom which seems to be the only one I have had for a few years now along with the calf twitching/neuropathy pain.

Did you use to run? I did back in 2004 when I became ill....I miss it...

 

[xrunner]

soxfan, I'm sorry to hear about what happened to your dad. It's not uncommon for similar traumas to make us more vulnerable to illness but at the same time our body is an incredible machine and given a chance it can repair itself in the most extraordinary ways. Also consider that doctors are different, I have had three Lyme doctors and all had different ideas about treatment. So I hope you'll find a way to resolve your symptoms.
As for running I used to until about ten years ago, now I prefer long walks and only run very short distances from time to time and at a pretty low pace...

 

[soxfan]

I have had two Lyme doctors and one of them being Dr. Horowitz in NY. Once I am settled in our new home I will begin the search for a new doctor...who might just have a whole different opinion on what is still causing my symptoms.

I just did a 8 k but at a slow pace. It was the first race I had done in years. Took me about 1:13 but I finished! I don't really do any running now either..I walk about 4 miles a day . I will be sure to come and give updates on what I do.

The other thing that really has a negative effect is riding in the car long distances. Meaning 6 or more hours..not sure why but it totally exhausts me and gets my brain overstimulated. All these symptoms are so bizarre to me I am not sure anyone will ever be able to figure it out...