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Help with an overactive nervous system

Discussion in 'Neurological/Neuro-sensory' started by soxfan, Dec 18, 2013.

  1. soxfan

    soxfan Senior Member

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    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.
    Last edited: Dec 18, 2013
    Hanna and WoolPippi like this.
  2. Marco

    Marco Old blackguard

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    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 :

    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.
    soxfan likes this.
  3. maryb

    maryb iherb code TAK122

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

    Hip Senior Member

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    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
    WoolPippi likes this.
  5. vamah

    vamah Senior Member

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    I have found tt GABA helps with those wired feelings.
    maryb likes this.
  6. xrunner

    xrunner Senior Member

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    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).
  7. Ema

    Ema Senior Member

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    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.
    Last edited: Dec 18, 2013
    helios likes this.
  8. maryb

    maryb iherb code TAK122

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

    maryb iherb code TAK122

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    Yikes if it works???????????
  10. soxfan

    soxfan Senior Member

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    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...
    Last edited: Dec 18, 2013
  11. xrunner

    xrunner Senior Member

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    @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.
    soxfan likes this.
  12. Hanna

    Hanna Senior Member

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    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.
    Marco likes this.
  13. SickOfSickness

    SickOfSickness Senior Member

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

    Ema Senior Member

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    This is kind of old but summarizes what I heard:

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

    maryb iherb code TAK122

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

    soxfan Senior Member

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    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...
  17. xrunner

    xrunner Senior Member

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    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...:sluggish:
    soxfan likes this.
  18. soxfan

    soxfan Senior Member

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    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...
    xrunner and Little Bluestem like this.

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