Discussions By Condition: Medical Stories

Chronic Peripheral Neuropathy

Posted In: Medical Stories 18 Replies
  • Posted By: Fountain_spray
  • May 13, 2008
  • 07:44 PM

Hello,

Here is a medical condition I have been coping with since the turn of the
millenia.

Feet - numb and stiff, tingling and fiery sensations.

Diagnosed with Peripheral Neuropathy by two neurologists based on EMG studies.

After seeing one of those neurologists for 8 years, he shared with me his opinion of the cause: high arches. I never made another appointment. I lived for 45 years without this problem.

I feel the cause is an infection. In 1999, I experienced the sound of
blood rushing like: kapow! though my arms. A voice said: You will never
be the same again.

Other symptoms: Chronic Fatigue, heart palpitations, food sensitivity
(dairy and bread especially). Degraded vision matched the onset of these
symptoms. Must wear corrective glasses, never had to before. I was
blind at night, then saw a video pattern inside my eye. This went away.

Also: in 1999 experienced inability to speak, as though my larynx was
being invaded.

This whole thing started with a large pimple inside my lower lip in Fall 1998.

My PCP said it looked viral, but declined to do a biopsy. The pimple persisted 4 months, I finally made it go away by putting iodine on it.

Peripheral neuropathy is always present, but it seems to decline about
5%-10% per year. Hands and feet initially were swollen. Now only the
feet are affected. Not swollen, but have gotten arthritis in big toe,
treated using Genuine CMO, and it responded well.

I can walk but I cannot run, except barefoot on sand. Endocrinologist
discourages going barefoot, having found a slight case of hypothyroidism.
Is this cause or effect? I say its an effect.

I have considered Lyme disease (diagnosed/treated in 1996), and also
Cocksackie B virus. Tests for Lyme were reactive until 2003, unreactive
since then.

I think this may have been caused by Mycoplasma pneumoniae. Recently
had an Ab titer of 160/dl. This I am told is not high enough. Still, since
feet are slowly improving, I wonder what that titer would have been like
5 years ago.

Since 2003, have fungal toenails in both big toes. Tried ozone injection
therapy for 7 months, no help. Tried Penlac for 2 years, some improvement. Just began using Lamisil. It is beginning to alter my
bowel into diahhrea mode.

Best help for symptom relief: Eat raw baby spinach. Eat a variety of
fresh peeled fruit. Avoid everything else. Even nuts, they carry fungus.

I have been on several courses of doxycycline, no benefit.

Suggestions?

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18 Replies:

  • More from the original poster...I have experienced some relief by taking foot soaksin a 50-50 mixture of drugstore hydrogen peroxide and water. Also add a pinch of sea salt to the mix.After 30 minutes, numbness and tingling are abated.But bone stiffness remains, perhaps highlighting arthritis.Also: I spent 22 years in the gym until being sticken with this. I had to get off the Stairmaster or my heartfelt like it was ready to explode. Possible mitral valveprolapse from bacteria clinging to the valves?My chest never felt as if I could not breathe, more like my heart could no longer keep up. This is strange asI was "in-shape". I experienced tachychardiaafter my final few workouts. Could not sleep with myheart beating 200 bpm all night.A CT scan and EEG have all been negative. So was theHalter monitor.I have been sedentary since December 1999.Fountain_spray
    Fountain_spray 13 Replies Flag this Response
  • I think it's viral and it gets into your nervous system and the nerves down the legs. That thing in your mouth could have been a virus. Were you checked for syphilis? There are a lot of herpes viruses that inflame the nerves from the glangion. Yes, that doc should have checked out that sore, especially since you have never been the same. It could be lyme since you had it at one time, but you might have two viruses or more. I think we all carry around a couple with us, beginning with the chicken pox.
    Monsterlove 2921 Replies Flag this Response
  • Hi Fountain spray, I have or had many similar symptoms, i.e. tingling, numbness, burning feet, pounding or rushing sound in my ears, chronic fatigue, palpitations/racing heart, sensitivity to dairy foods, swollen ankles and feet and fungal infection in big toe nails. Also, oddly, a pimple inside my lower lip - bizarre coincidence! I had many other symptoms, too, such as chronic sleeplessness, muscle spasm, extreme pallor, irritability, depression. I've had great help, advice and support from the B12 thread - the very long one! - on this site and as a result in February this year started taking B12 as methylcobalamin plus various essential cofactors. Now, three months later, my symptoms are greatly relieved and I'm feeling optimistic that those which are still lingering will eventually clear completely. Of course, I can't say definitely that B12 is the root of your problems - however it is completely safe to take and could be well worth trying. If you do decide to, I'd recommend reading the book by Sally Pacholok called "Could It Be B12?" (available from Amazon I believe) and also reading some of the posts on the B12 thread about symptoms, treatment, which cofactors to take etc. You can also just post your symptoms there and the very helpful people will give you their views. You could also look at these sites/forums:http://neurotalk.psychcentral.com/ http://roseannster.googlepages.com/homehttp://www.paulgolding.id.au/Before you take any supplements, you may wish to get tests for serum B12, urinary Methylmalonic Acid and Intrinsic Factor (see Sally's book for details). This is so that you have a 'baseline' measure on these because once you start taking supplements you alter the baseline. Good luck!jan
    janetah 134 Replies Flag this Response
  • Thank you MonsterLove and Janetah, for the courtesy of your replies. B-12 is one of those things I have tried. I used sublingual timed-releaseB12 for several months, no help. Like other modalities, these are primarilybusinesses. For example, there is something called the Rebuilder thatis a machine that reconstructs nerves damaged thru PN. To me, its just avariation on my Rife machine. Rebuilder uses the Schumann frequency,same as I have used on my Energy Wellness Rife machine. So is ozone therapy, hydrogen peroxide therapy, and chelation therapy. I have used oral EDTA and chlorella. Both are chelators. The EDTA mademe dizzy. Or was that from the ginko biloba that it came mixed with? I have considered whether this could be diabetes. That does not runin my family. Cocksackie-B virus can cause diabetes by destroying the pancreaticislet cells. This results in a loss of GAD-65 enzyme and brings on StiffMan syndrome. Fortunately, my stiffness is not progressing. A test for Cocksackie-B was negative. As for syphilis, I have never had a chancre or the other characteristicrashes. No groin swelling either. Though I have experienced a loss of libido. They attribute everythingto "aging". I respond well to Yohimbe and ginseng. I have seen 3 different neurologists. None of them had any intellectualcuriosity about my condition. None so much as did a single Google search. How do they think I do my research? When confronted, they mumble andsay its normal part of aging, or its all in my head. I disagree. To them, my feet appear normal even with the toenail fungus. And Ioften stumble while walking. Some people have noticed, but neurologistshave judged that my gait is normal. In 2003, a neurologist refused a request for a spinal tap, despite havingperformed one for me 15 years earlier, for syphilis. Nothing was found(1988). That was before HMO medicine. Recently a dermatologist biopsied a red crusty spot on my torso midsection. In describing this as a wart, he said it was viral. Yet, the virus was not named by the lab. Why not? Mycoplasma pneumonia is a small bacteria, not a virus. Okay, I have a virus. I have never had a chancre. It is not syphillis,but I shall have another test. Fitness guru Gary Null says viruses are all around, the strategy is toboost the immune system to cope with them. That is done primarilythru food: fruits and vegetables, and supplements. I would prefer to eradicate this virus. If not yet technically possible, at least identify and characterize it. I have been to rheumatologists, neurologists, endocrinologists, dermatologists, podiatrists, infectious disease specialists, allergistsand immunologists. All have done little. They work like technicians,not scientists. Is there anyone out there that can lead this quest, besides me?I feel it is inappropriate to have to guide my own investigation,but I have no other choice. Fountain_spray
    Fountain_spray 13 Replies Flag this Response
  • Hello, Here is a medical condition I have been coping with since the turn of themillenia. Feet - numb and stiff, tingling and fiery sensations. Diagnosed with Peripheral Neuropathy by two neurologists based on EMG studies. After seeing one of those neurologists for 8 years, he shared with me his opinion of the cause: high arches. I never made another appointment. I lived for 45 years without this problem. I feel the cause is an infection. In 1999, I experienced the sound ofblood rushing like: kapow! though my arms. A voice said: You will neverbe the same again. Other symptoms: Chronic Fatigue, heart palpitations, food sensitivity(dairy and bread especially). Degraded vision matched the onset of thesesymptoms. Must wear corrective glasses, never had to before. I wasblind at night, then saw a video pattern inside my eye. This went away. Also: in 1999 experienced inability to speak, as though my larynx wasbeing invaded. This whole thing started with a large pimple inside my lower lip in Fall 1998. My PCP said it looked viral, but declined to do a biopsy. The pimple persisted 4 months, I finally made it go away by putting iodine on it. Peripheral neuropathy is always present, but it seems to decline about5%-10% per year. Hands and feet initially were swollen. Now only thefeet are affected. Not swollen, but have gotten arthritis in big toe,treated using Genuine CMO, and it responded well. I can walk but I cannot run, except barefoot on sand. Endocrinologistdiscourages going barefoot, having found a slight case of hypothyroidism.Is this cause or effect? I say its an effect. I have considered Lyme disease (diagnosed/treated in 1996), and alsoCocksackie B virus. Tests for Lyme were reactive until 2003, unreactivesince then. I think this may have been caused by Mycoplasma pneumoniae. Recentlyhad an Ab titer of 160/dl. This I am told is not high enough. Still, sincefeet are slowly improving, I wonder what that titer would have been like5 years ago. Since 2003, have fungal toenails in both big toes. Tried ozone injectiontherapy for 7 months, no help. Tried Penlac for 2 years, some improvement. Just began using Lamisil. It is beginning to alter mybowel into diahhrea mode. Best help for symptom relief: Eat raw baby spinach. Eat a variety offresh peeled fruit. Avoid everything else. Even nuts, they carry fungus. I have been on several courses of doxycycline, no benefit. Suggestions?hello, you can get a real lesson on fungus at knowthecause.com, with doug kaughfman, in the meantime try wild oregonol, rub it on the toes, plus the gels for the gut.
    sickinva 87 Replies Flag this Response
  • To the Community:I also was tested by a vascular surgeon, who wrote thathe observed normal wave forms on my micro-circulationassay, but with increased pressures. He made no commentabout the increased pressures, but it seems to me theyare indicative of the sensation of peripheral neuropathy.This plus two EMG studies confirms I have PN.This is an encephalopathy. Neuro-involvement.Giving it some more thought, using my college virologytextbook, I NOW BELIEVE I HAVE A CASE of....Human-to-Human RABIES !!!People would never suspect rabies because everyone thinks you have to be bitten by a wild animal to get it.A bite is unnecessary because it is the saliva thattransmits the virus.In my case, it was not a bite but a suck. Namely,of an unexpectedly wet nipple. She tried to dissuademe, but I thought she was being shy, and I went for it.Now I've got it! Permanent cooties!Fact: rabies is not always fatal.Fact: 15 documented cases of human-to-humantransmission. 8 were from corneal transplants, 7 werefrom transplants of other organs.That is, cornea and organs from dead infected humanshave been tragically transplanted, causing death.This hints that human rabies IS MORE PREVALENT THANcommonly believed.Since old morality has been repealed, humanity is atrisk. Too much aloofness or incompetence by fieldpractitioners.I've had this going on 10 years.In 2000 I was turned away by the Emergency Room.Time to go back?I want a spinal tap with a full work-up !!!Is that possible with HMO medicine?Fountain_spray
    Fountain_spray 13 Replies Flag this Response
  • Folks,It goes like this:15 documented cases of human-to-human rabies transmission.All from transplants.Would those organs have been transplanted if the donorwas known to have had rabies?Of course not.Perhaps each donor suspected something was wrongwith their body, so they donated it to science notexpecting organs would be harvested.So, 15 people died, who had rabies, but their death wasnot attributed to rabies.And their harvested organs caused rabies in theirrecipients.It would appear the human reservoir of rabies is farlarger than ever presumed. Fifteen cases from organdonors! How many cases in the rest of the population?Depending on one's immune system health, such aninfection may not be fatal.This may well account for the epidemic of fibromyalgiaand Chronic Fatigue cases.Fountain_spray
    Fountain_spray 13 Replies Flag this Response
  • I think it's more likely a monkey virus than rabies. Was she foaming at the nipple? I have a theory that all the kids were exposed to one of the many monkey viruses via innoculations in the 50s, 60s with the help of the drug companies, the horrible monkey research at the time and Nixon.
    Monsterlove 2921 Replies Flag this Response
  • Good point, Monsterlove. Yes, I have read about the fact that when vaccinations were prepared,the subject virus got attenuated but other viruses were passed thruwithout attenuation, because those were not being considered. Today, with so many viruses, not all have been identified, fully sequencedand characterized, though someday soon that may be accomplished. Alternatively, there is another rhabdovirus: vasicular stomatitis virus(VSV)bullet-shaped like rabies, that may produce a survivable infection. Given the likelihood that monkey virus got into our population in the1960's, it is now being passed human-to-human. Public health must become informed about this. Lifestyles must changegiven this new awareness. People think Chronic Fatigue is due to Epstein-barr. Wrong. There is another serious viral risk out there besides HIV and herpes,and there is little or no research or teaching of it. Fountain_spray
    Fountain_spray 13 Replies Flag this Response
  • I doubt if your lady was a transplant recipient of a rabied organ. Most likely, one of the many herpes viruses or a mutant herpes on the lurk. Now, this guy has researched the monkey viruses and the government really doesn't want to hear about it; you will be hushed...kind of like finding an alternate green source of fuel/energy...the corporations don't get rich and politicians don't get their wallets padded from truth. You can read two full chapters and it is very interesting:http://drmarysmonkey.com/content/category/4/13/28/
    Monsterlove 2921 Replies Flag this Response
  • MonsterLove, my point is that if rabies got transmitted15 times from unsuspected organ transplants, thissuggests the incidence of a rabies reservoir in thehuman population is much larger than acknowledged.I ask, if 15 deaths occurred from transplants, then howmany more carriers are there that do not become donors?It seems to me the answer is "many".Yet science acknowledges no known case of human-to-human infection. Seems wrong to me.Thanks for the link to Dr. Mary's Monkey by EdwardHaslam.Except for the book cover, the pages are too small to read. What is the technique you use to read it online?What is the "slider". I know what the arrow keys are.Back to me: My major symptoms are: Severe PN inboth feet, including the toes. Heart palpitations, thoughnot detected by ECG or Holter monitor, nor by a Heartstress test. However, in December 1999 an echocardiogram showed some regurgitation -- blood being pumped in reverse! Other symptoms: mentalconfusion (I have that under control), chronic fatigue(just eat fruits and vegetables, preferably green ones),-- I have no fibromyalgia (muscle pain) by the way(that's good!). Final symptom: vision degradation.This retrovirus hacked into my optic nerve! And thatis the only thing that is getting worse, feet are improvingyear to year. Lamisil is making my toenail fungus disappear.That's it. Hope to hear from you and other posters.I just cannot find a doctor capable of characterizingmy exact infection. Yet I know they are out there.Probably have to go to a research hospital.Fountain_spray
    Fountain_spray 13 Replies Flag this Response
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  • MonsterLove,Thanks, I read the Forward, the Prologue, and Chapters 1and 8.An incredible dark look at the intermingling of politics andmedicine.As for me, I know I do not have cancer.I also had no PN until I was infected from anotherperson.So, if there are simian viruses afflicting our population,they can now be transmitted human-to-human.HIV, nee SIV, is not the only one such virus.You have speculated that I have an internal herpesinfection. I have no herpes-like skin problems, though.Back to square one: I need a research doctor toisolate my retrovirus.Fountain_spray.
    Fountain_spray 13 Replies Flag this Response
  • Another question is:If this is a "monkey virus" does that mean Medicine willnot treat it because Medicine is in the business oftreating humans?If a human has a monkey virus, are they out of luck?Fountain_spray
    Fountain_spray 13 Replies Flag this Response
  • My point is: Do I need to see a veterinarian to get help?
    Fountain_spray 13 Replies Flag this Response
  • Hi Fountain_Spray, If you haven't already, you might research the condition called "Guillian-Barre Syndrome" My sister-in-law got this and the doctors think it was from an injection of cortisone for an ear infection. Somehow a virus got in the blood and shut down the nerves in her body starting in the feet and moved to the head. Because of poor diagnonis, all her peripheral nerves shut down and she almost died. Today she is in a wheel chair taking large doses of Neurontin. YOUR SYMPTONS SOUND VERY SIMULAR to her's but not as severe. My research showed that many people got this from a routine flu shot and most only had the nerve damage in their feet and legs where she had it over here entire body. Just a thought. Hope your condition improves. TAP22 By the way, I have been diagnoised with peripheral neuropathy and after many blood tests my neurolist has concluded that the nerves in my feet are just dying from natural causes and old age (65). I'm not happy with this diagnosis but cannot find any other explination.
    Anonymous 42789 Replies Flag this Response
  • Hello TAP22,Thank you for offering your thoughts.I am aware of Guillain-Barre syndromeand I do not believe I have this condition.I do not have low blood pressure. I do not have muscle weakness.My condition took 1.5 years to overpower me, and sincethen I have improved with no drugs and no therapyexcept for massage, about 10% less numbness/stiffness/tingling each year.In other words, I am not getting worse, but better.Still, eight years after the onset of PN, this is not entirely gone. Neurologists have refused to do a spinal tap.Two neurologists have confirmed I have PN thru EMG studies.A vascular surgeon has interpretted elevated pressurein my feet as nothing serious. (not much help, was he?)I have been turned away from two hospitals. OneEmergency room told me I was normal. Another, afterbeing admitted to their Wound Care center, sent mehome without treatment.I believe my condition more closely matches StiffMansyndrome, which is another autoimmune disease.I know when, where, and from whom I got infected.I have found no medical practitioner with sufficientintellectual curiousity to investigate beyond the normalbattery of tests.My CBC blood tests and blood pressure are normal.I have steered my own health investigation. Based onGoogle as a research tool, I requested and had a testfor Cocksackie B virus. This can cause diabetes withconcommittant Peripheral Neuropathy. Gladly, thattest came back negative. Of course, then I wonder if the Lab is providing accurate results or not.One condition that has been detected is borderline hypothyroidism (which itself can account for some ofmy symptoms). Yet because of my history I believethis is an effect not a cause. There is no history ofhypothyroidism or diabetes in my family. Also detected was a slightly elevated antibody titer tomycoplasma pneumoniae (a small bacteria). This wasnot considered high enough to account for my condition,yet I wonder what that result would have been if thattest were done at the height of my PN pain.Again, I have received no treatment and no diagnosisbeyond PN.I agree with MonsterLove: I have an under-the-radarvirus, which Medicine may be keeping quiet aboutbecause of the many people reported to haveFibromyalgia and Chronic Fatigue nowadays. This wouldchange public policy too much, since there is no cure.Face it, policy encourages HIV positive individuals to remain active, albeit with protection. I can function well enough in everyday life, my impairment is recognizable only during competitivesports activity. If my job was as a construction worker,I would probably need to go on disability. Yet sports spectators outnumber sports participantsat my age (53), so a sedentary lifestyle is not consideredunusual. My career behind a desk is suitable, exceptfor my degraded eyesight (which too is under controlby prescription lenses).Fountain_spray
    Fountain_spray 13 Replies Flag this Response
  • Update from fountain_spray: I had a blood test for syphillis test in September, and the results were negative. According to my PCP, this test would have detected such an infection even though it may have occurred 10 years ago. As for my hypothyroidism, this is inferred due to the fact that T3/T4 output levels are normal, but TSH input level is above normal, 3 years running. My endocrinologist is monitoring annually to see if this changes.
    Fountain_spray 13 Replies
    • October 30, 2008
    • 04:26 PM
    • 0
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  • Case solved! After 10 years visiting all kinds of doctors, finally the rheumatologist that refused to see me for 4 years agreed to see me. Based on my PN, arthritis, and dry eyes, He gave me a blood test that showed positive for ANA anti-nuclear antigens. He followed up with a more sensitive blood test that showed positive for SS-B antibody for La antigen, indicating positive for Sjogren's Syndrome. This is classified as a rare disease. The description fits me to a 'T'. No Systemic Lupus Eryth... (SLE). No syphillis (thanks Monsterlove, for suggesting I have that checked). Previously found by endocrinologist: mild hypothyroidism, taking 25 or 50 mcg/daily Synthroid. That fits Sjogren's too. No Hashimoto's in my case. Well, that's it. Bye!
    Fountain_spray 13 Replies
    • August 16, 2010
    • 02:54 PM
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