Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Symmetrical Nerve Loss

Discussion in 'Neurological/Neuro-sensory' started by SDSue, Nov 8, 2014.

  1. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,017
    Florida
    My neurologist found bilateral, symmetrical, large fiber nerve conduction loss in my legs, in addition to my small fiber neuropathy, so I'll be having a spinal cord scan and nerve/muscle biopsies. Needless to say, I'm less than thrilled about the symmetrical nature of the problem.

    Combined with bilateral kidney scarring, dysautonomia, and everything else, I'm a bit unnerved. Is this "normal" in ME/CFS? Does our brain inflammation carry into our spinal cords?

    Anyone have experience with these things? Thanks!
     
  2. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,454
    That is unnerving. :( I don't think that's known to be "normal" in ME, but there's more we don't know than we do know.

    I'm sorry to hear you're dealing with this on top of everything else. :hug:
     
    Little Bluestem, Gingergrrl and SDSue like this.
  3. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,177
    Ventura, CA
    Did you ever get tested for lyme disease or other long standing infectious diseases?
     
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,934
    Likes:
    22,100
    USA
    @SDSue I don't know the answers to your questions but am so sorry that you are dealing with this new issue on top of everything else! As you once said, this disease is unrelenting. Please keep us posted.
     
    SDSue likes this.
  5. zzz

    zzz Senior Member

    Messages:
    563
    Likes:
    2,427
    Oregon
    So sorry to hear this, SDSue! :( Sometimes it seems like the list of problems from this disease is never ending.

    There is an explanation that is consistent with some lesser-known findings in ME/CFS. This is referred to in the PR article A Neurological Channelopathy in Chronic Fatigue Syndrome (ME/CFS)? Specifically, the sodium channel has been found to be malfunctioning in PWME. If the sodium channel malfunctions, one of the results you can get is nerve conduction problems. Many anesthetics work by blocking the sodium channel, which then blocks nerve conduction completely.

    The original Japanese work on sodium channel malfunction in CFS was done over a decade ago.
     
    Gingergrrl, SOC and SDSue like this.
  6. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,017
    Florida
    I've had some work-ups for Lyme, but I don't think anything beyond Quest Labs type stuff. I take it this can be a sign of Lyme?

    I've read a lot about Lyme, but I'm quite confused and overwhelmed by the amount of information. I guess it's beyond time to get "real" labs? Where on earth does one begin that process? I can get one of my docs to order labs, but which labs do I request? Thanks!
     
  7. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,017
    Florida
    Thanks so much for this info. I'm glad to know it's probably nothing more sinister than "just" ME - (as if there are many things more sinister than ME lol :nervous: ) The real question is: What doesn't ME affect?
     
    Gingergrrl, zzz and SOC like this.
  8. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,177
    Ventura, CA
    Get tested through Igenex lab for a better answer.You can order the test yourself or through a doctor but its important they have an education on it, that or get a copy of the result from the doctor to post to someone else on your own. It is pretty easy to decipher the test with the positive/negative and specific band strain activity.

    Even if the top portion of the test doesn't have enough strands to hit positive, if there are subsequent positive strands in the other portions it shows activity of the bacteria and slight antigen response. This would mean at some point you would have been exposed to the bacteria in one way or the other.

    The best help you would get would be with a lyme literate medical doctor, the nerve conduction issues are definitely a sign of something that happens to some with lyme, usually left untreated for too long or in severe neurological presentation. If the nerve conduction result wasn't the result of an untreated b12 deficiency ,M.S., or a diabetes then its important to find what kind of possible infectious causes could be taking place. M.S. is also being shown to possibly be attributed to infectious cause itself rather then hyper immune response, at least in a large portions of cases as is also ALS.
     
    Last edited: Nov 9, 2014
    Valentijn and zzz like this.
  9. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,017
    Florida
    Thanks so much @Martial, for the good information. I guess this nerve conduction loss is good to know, as it points me in a more specific direction. As I learned in school, "The patient can have as many diseases as they pleases (sic)". ME is all-encompassing, but it sure doesn't rule out the possibility of other diseases such as you mention.

    Considering my hiking and camping background, it's time for me to crawl out of my Lyme denial hole and take some action. :nervous:

    I appreciate the guidance!
     
    zzz likes this.
  10. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,177
    Ventura, CA
    Sure no problem Sue, I hope in the case that Lyme or another co infection/infectious disease issue is the root of your problems then the M.E. will subside after treating it everything fully!
     
    SDSue likes this.
  11. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,454
    What!? And leave me in this hole all by myself? :eek::(

    Sigh, it never ends, does it? You get one little corner under control (after a fashion) and a whole new area opens up that needs exploring.

    I, too, have had the Lyme question on the back burner because I haven't the energy, time, or money to pursue it yet. So far I have tested negative (or insufficiently positive) on the standard tests, but with my history of hiking and camping (and tick bites) in several different areas of the US, further investigation is probably warranted. Seems like you are in the same boat (or should I say tent)?

    If you decide to pursue the Lyme question, let me know. Perhaps we can at least pool our cognitive resources (such as they are) and try to figure out how to follow up on Lyme testing and treatment.

    I am wondering about trying to see KDM someday when he is in Reno. I believe he tests for not only multiple borrelia species, but also other tick-borne illnesses.

    What caused you to look into nerve conduction problems? I don't have the pain I hear about with small fiber neuropathy, but I'm having increasing trouble with tingling in my hands and arms which is making it difficult to do fine motor activities. It was (rather sloppily) diagnosed as carpal tunnel a number of years ago but I'm no longer convinced. I don't think that would affect my upper arms and shoulders.
     
    Valentijn and NK17 like this.
  12. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,177
    Ventura, CA

    You guys can try a natural approach using something like the Buhner or Cowden protocol, if it is lyme then its a very slow and up and down process to recover though. These protocols also work for a multitude of co infections and viruses, parasites, fungus, etc too. Its essentially a way to really clear out your system of any pathogens that could be aggravating your condition. On top of all of this a CFS doctor could easily get the test ordered through them using IgeneX and then interpret results with you.

    I would be weary with extended antibiotic use like IV though, a big part of healing also takes place in the gut and pharm grade antibiotics do not have a great success rate in chronic lyme. Most the people I talk to mention either relapsing as soon as they get off, not getting any better, or developing issues like C diff after a while. Of course a large portion do respond and get better with it and that's why we don't hear from them as much, it just seems not as worth while with its poor success rate and risk of side effects as it is. At least until some better treatments come along in the future and more effectively wipe out the bacteria's.


    There is a possible vaccination and cure in the works though, one using a protein from western fence lizards which provides immunity from the bacteria and would clear it out of the system. Another using an enzyme to stop the production of mangenese in the cells of the bacteria, virtually starving all of it to death. The last one I heard about was the creation of a new antibiotic that more effectively targets the specific infections head on to make treatment more effective, and less chance or relapse. On top of all of that though you need to focus on de tox and getting it out of the system too. If the dead bacteria remains you will still have symptoms but possibly no active infection left. This is also a probable cause of some people staying so ill after years of antibiotics.
     
  13. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,017
    Florida
    It's interesting that vaccines are being developed for a disease (Lyme) that doesn't even exist! (sarcasm):D

    I like that the protocols you mention don't use long term antibiotics, as I'm quite leery of them after seeing what they do to the biome. I suspect I was also floxed, as I suffered achilles tears after a course of Levaquin. Are you on one of these protocols, and if so, how long have you been working it? Would starting a protocol throw off results if I wait on the Lyme labs but go ahead with protocol?

    @SOC, looks like we'd better get ourselves tested and look into these protocols.
    Right? The Lymies have been kind while they wait for us to poke our heads our of our tents and do something! (shootout to @Sushi)
    While we are getting adequate ME treatment, there is definitely a "next level". I have finally covered my bases for disability, so can branch out a bit. (Affordability is the issue, tho. Even if I can swing his initial visit, I'm not so sure I can continue the necessary treatments long term. Then again, can I really afford not to go?)

    The good thing is that flights to Reno can be gotten quite cheap. When you show me your plane ticket, I'll show you mine lol. We'll have a PR party in his office.
    I have small fiber neuropathy, which I think is also called run-of-the-mill "peripheral neuropathy". If I'm not mistaken, that's where the tingling and pain come from. Like yours, mine started as tingling. It progressed from there after a couple of years, and now the pain can keep me up at night.

    In my case, my neurologist and nephrologist are working together to see if the cause of my kidney scarring and malfunction is treatable. The nerve conduction studies, which revealed the symmetrical issues, are a part of that process. I don't even want to know what they're trying to rule out - I'm so burned out on all the tests and "what-ifs".

    I'm going to throw caution to the wind and hit "post reply" - too tired to proof!
     
    Valentijn, NK17 and SOC like this.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    13,980
    Likes:
    21,292
    Albuquerque
    Hate to mention it, but this is also a symptom of Borreliosis. :(

    Sushi
     
    Valentijn and zzz like this.
  15. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,177
    Ventura, CA

    Yes, I had the same issues as well. I even developed oral thrush after only a very short term using ceftin. I had to take diflucan and nystatin for a bit of time to clear it up as a result. I am sorry to hear about your experiences with levaquin. It is such a toxic antibiotic I am shocked to see its still given in anything less then an absolute last case emergency.

    I am using a few things from Cowdens protocol and am on the core protocol that Buhner uses, Cowden has a protocol that covers multiple infections, Buhner however has different herbs based on symptoms and co infections or other issues going on. It would only affect a test looking for the bacteria like a PCR smear, the normal testing wouldn't be affected, if anything you would start showing more positive activity after the immune system starts getting stronger from the protocol.


    @Sushi Well at least for the most part of cases its reversible with treatment, but it could be a lot worse. I have talked to several people recently who declined into an ALS motor neuron disease style presentation. Now keep in mind that is very, very, rare happening after years and with no effective treatment in place. It is not something to worry about if you already pursue treatment or in the majority of cases as is. Having an ALS like presentation is indeed is pretty tricky to deal with. At that point some interventions might not even work if the process is already too far deep or unresponsive to medicine.
     
    Last edited: Nov 9, 2014
    SDSue likes this.
  16. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,454
    Sigh.... I was afraid of something like that. Clearly I need to look into tick-borne illnesses, but I'm so overwhelmed with everything else right now, I can't face the prospect of looking into something new, although like @SDSue, I have to ask myself, "Can I afford not to?"
     
    Valentijn, SDSue and Sushi like this.
  17. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,934
    Likes:
    22,100
    USA
    @SDSue, I have no idea if you have been exposed to Lyme and think it is definitely worth it to get proper testing. However, I just want to give an alternate possible explanation that small fiber neuropathy and all kinds of nerve conduction problems have been caused by Levaquin. Some people suffer the damage days, months or even years after the fact. There is now an FDA Black Box warning for the FQ antibiotics for peripheral neuropathy and many medical journal articles on this topic.

    Although I never got any neuropathy, the tendon in my right arm almost tore in 2010 after only seven pills of Levaquin and it took a year and a half to re-gain full function of that arm. Levaquin is proven to cause mitochondrial damage and I wonder if my system had not been weakened and poisoned by this antibiotic, if I would have even gotten mono in 2012 or if I would have been able to properly recover and not go on to get CFS. Obviously I will never know but I suspect I will remain bitter about the entire Levaquin experience until the day I die.

    Having said that, I know your experience may be very different than mine, but if you actually had Fluoroquinone Toxicity Syndrome like I did (and you said you had several tears in your achilles) I would at least consider this as a cause of your neuropathy. I am only mentioning this b/c I care about you and NOT trying to scare you or diagnose anything!
     
    SDSue, AndyPandy and zzz like this.
  18. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    3,017
    Florida
    I had no idea that Levaquin could cause mito damage in addition to everything else! I took Levaquin in 2007, and within months I was beginning a slow downward course. Because of the delayed course of damage in most cases, no cause-effect can be proven in a court of law, so they keep peddling the poison to more unsuspecting innocents. Shameful!

    My mito function was measured using citrate synthase which showed extremely poor functioning. I hear you on the bitter thing - if indeed one drug is to blame that's incomprehensible.
    Am I correct in that Buhner protocol has only 3 main herbs? Is that enough to kill off the beasts or do you add more as time goes on? On his site he says that you should know within a couple of months whether or not the treatment is working. Has that been your experience?

    I assumed any Lyme protocol would be dozens of supplements and herbs. Wouldn't be the first time I was wrong when it comes to ME and Lyme!
     
    zzz and Gingergrrl like this.
  19. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,177
    Ventura, CA
    Well with Buhner there are a few main herbs but for co infections and for general use there can be a bit more added, I used stuff to treat Bartonella, Babesia, and parasites on top of the lyme. The core protocol on the site does work well but most people mix in other things on top of it based on personal symptoms, and possible co infections. Cowdens protocol will cover everything as a stand alone if you follow his guidelines as well. Buhner has much more info on his books with lyme and co infections, upon his other writings then the website alone. Sadly its all just not accessible from the site directly.

    I have been using the protocol on top of some cowden and other things I use for around 7 months. I definitely noticed help but I am still in a very up and down process, a lot of symptoms have faded but it just takes a while to really clear everything out. I wasn't using the full doses from Buhners protocols either, rather mixing some of the main herbs with stuff from the other protocol and methylation support I use. When I run out of my Cowden Herbs I am going back and going to hit full doses and pulse the herbs through out the day using Buhners protocol.

    Edited* thanks for heads up Sushi!
     
    Last edited: Nov 10, 2014
    SDSue likes this.
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    13,980
    Likes:
    21,292
    Albuquerque
    @Martial

    Somehow the quote in the above post was attributed to me--it was from SDSue.

    Sushi
     

See more popular forum discussions.

Share This Page