Seeking Feedback on BFS Symptoms

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so are you suggesting that parasites could be gobbling up our nutrients and therefore our bodies are out of whack? I'm not mocking you, it's a serious question. Wouldn't blood work pick up on that? Vitamin deficencies and stuff?
 
As to suffering - everyone has a choice to ignore what is obviously not what they grew up with. Ignoring it will not make it resolve. Sure can calm those who can potentially become OCD or just plain anxious. Not only from the worrying but from the result of parasitic infection. If one wishes to live with it.....that is of course their freedom of choice. Just not mine. If I wasn't born with it as a genetic abnormality it doesn't belong to me and I don't want it. Not owning it and not giving it power does not mean ignoring it. ************As to parasites gobbling up nutrients. Absolutely yes. But they do much more damage than that. P)arasite's liquid elimination is amonia. Just think about the havoc that causes in one's body. Blood tests AND stool tests are how labs can try to pick identify parasites. It can be somewhat of a needle in the proverbial haystack since there are so many different kinds. A proper intake by an Infectious Disease doctor should narrow down what to look for. For example......does one have a cat and scoop/clean liter every day? Or possibly did that person go on a trip to a third world country? Or did that person go to a restaurant that has kitchen workers from third world countries? Such people are used to and grow up living with such parasites and they do not bothere them........but we are not used to them and they DO bother us greatly.When I was struck with my first exposure to parasites twenty+ years ago the cause was multiple. I allowed an MD to do chelation therapy on me as preventative to keep my vascular system clear. He did too much as they were still investigating how much to do.....and it weakened my immune system. At the same time I was also exposed to lettuce from South America which contained the liver fluke which invaded my body and because my immune system was weakened the parasite migrated to my liver and was eating me for sushi. I HAD to self diagnose because the general MDs are just not equipped to understand this process. With the help of my Chinese mentor in 4 days he killed off and expelled every parasite+ from my body via the old fashioned way of simmer boiling disgusting tasting Chinese herbs which purposefully gave me diarrhea for four days to expel the dead parasites after killing them. What I suffered with for three years which the MD diagnosed as "a shot nervous system", taking Xanax to try to calm the symptoms but had not gotten rid of them was totally resolved in just 4 days.
 
Something is Definetly causing the twitching but it is 100% not parasites. As a infectious disease doctor myself I can promise you that it's not. Parasites don't work like that. If a parasite was taking nutrients from you the first big sign would be extreme weight loss not twitching. However certain viruses can effect the nervous system and cause twitching.
 
Correct....and if I wasn't clear let me be so. I never said that 100% was caused by parasites. What I said over several different posts in different areas was that in MY particular case it WAS parasites which more than likley was coupled with a viral component. With that being said - parasites can definitely cause twitching due to what TCM considers an attack on the liver and/or stress on the liver sytem which has a lot to do with cleansing the blood and the smooth flow of blood and energy to all parts of the body. AND....in my own case 21 years ago with fasciolopis buskii the CDC pointed to lettuce from south America and some other adverse common day ways of infestation. The Chief MD of Paracitology told me that it is more frequent than not for Americans to have recalcitrant digestive disorders caused by parasites than not. Soooo...it is not unreasonable to rule out such a potential pathogenic irritant which might be the carrier of multiple viruses.As an Infectious Disease doc you might appreciate one case of mine with the patient blacking out in addition to other similar symptoms. The CDC (Atlanta) had the MD do a second draw because they found Cysticercosis loaded in her blood and as you know this parasite can and does adversely affects muscles. She was a native of Mexico and visited there every year eating food and drinking water and potentially getting reinfected. Between the first and second blood draw the Chinese herbs in FACT killed the parasite and no more was found in her blood. But Chinese herbs do have their limitation. They cannot pass certain blood barriers and western medications were needed. She was cured of all her symptoms. The MD asked me if I used garlic. I chuckled and said no....Chinese herbs are much more sophisticated than garlic...not saying that garlic is bad.
 
Doc....I've said it but maybe not clearly enough. MDs need to look more towards liver/gall bladder function/dysfunction for the causes and resolution of BFS. Parasites and viruses are one distrubance. And BTW you know that the liver has over 500 daily functions from a western medical standpoint. Also...I don't believe that three liver enzyme tests and a lipid panel are indicative of ALL the imbalances that can happen in liver function.
 
It is most unlikely to be parasites, for a variety of reasons. We know about parasites; they're generally pretty big and easy to find; a "body load" of parasites enough to cause widespread muscle twitching would probably cause you to be critically unwell; parasitic infections are largely limited to third world countries...... yada yada yada. But that doesn't take us very much further. The aetiology, IMHO, could be viral (or an exaggerated autoimmune response to a virus) or psychiatric. Other things (vitamin deficiencies, environmental toxins etc.) are further down the list.The point is, we just don't know. This is why I resent the throwaway title "benign". It seems presumptuous to give the condition this label when we don't know the cause, and there are only a handful of largely epidemiological studies on the condition itself. Let's have some decent scientific studies, find the cause and THEN label the condition benign - if appropriate. I'm a 45 year old man who is funtioning physically at about 80% of what I was previously. Calling this "benign" without having a clue why we have what we have, serves only to trivialise our plight.That said, I am thankful to, and encouraged by, the people who posted on this forum with a "let it go" message. In the absence of anything else, this seems like a positive way forward and is the route I'm going to take. I'll come back here for those periods when I'm twitching all over, physically and mentally exhausted yet "wired" at the same time. Hopefully, they'll become few and far between.Happy New Year :D)
 
Expenses per capita in US $ China $216, Cuba $675, USA $7,410. Thats NUMERO UNO in COST worldwideRanking in QUALITY of healthcare China 61, Cuba 36, USA 72 Life expectancy 2009 China 74, Cuba 78, USA 78Number of obese as a percentage of population China 2.4%, Cuba 8%, USA 31.1%WHO statistics and BTW the WHO states that prior to 1980 China has much better overall healthcare than the USA.No reliable statistics from 1000 years ago but if I had to guess.....China with its thousands of years of historical experience was better than the USA.As to parasites....it's amazing what some will say when they haven't the faintest idea what they are talking about.
 
Hello gerrard... I posted the below on a different board... Have a read and if you can / want to see if there are any similarities.There is some really interesting debate going on on your thread... its great to here different peoples approach / attitude to this.... Heres my post.Hello. thanks for looking at my post. I have recently posted on an ALS forum, and received quite a few negative, if not abusive replies. I debated posting here for.fear of the same. But hey, ive got thickish skin.I am a 41 year old, previously extremely fit / healthy male from the UK.At the beginning of August this year, i became ill with flu like symptoms, tiredness, general malaise, low grade fever etc. I also had recurring perfectly round mouth cankers. I couldn't shake this off and visited my GP who took loads of blood tests. Shortly after i began getting really intense pains in my lower right rib area. It felt like my liver was twice the size it should be. What really stood out to me though was a tremor in both of my index fingers. The tremor was an evoked response, caused by use of a mouse or similar everyday function.My liver was scanned along with spleen and kidneys. All normal. My bloods all came back fine, with the exception of raised Epstein Barr titres. My GP told me this was probably a flair of an old infection. Although i got the impression he didn't really know what was going on.September came and went, as did the illness, some days didn't feel too bad, but most times i felt at best "wrong". October was the same, no improvements / changes.in November i started to take olive leaf extract, L Lysine and milk thistle in an attempt to support my failing body. I revisited my GP, who did more blood, all still fine.In mid November i began to feel incredibly dizzy / lightheaded and noticed a ringing in my ears (tinnitus) along with some minor cognitive issues like seeing letters the wrong way round and having a few memory issues. i was also getting really odd and and random muscle twitches / spasms in various parts of my body. I also had a really spaced out, wooly head feeling, really difficult to describe.I ended up in the emergency dept. Of my local hospital on three consecutive evenings. I was assessed by three different Drs, more blood and head CT scan. All normal.i then went on to see 2 further drs on a ward. They could find nothing. The next day i went to see a neurologist who gave me the most thourough work up ive ever known... He could find no abnormalities.Since then i have had more really odd symptons / sensations. Ive had some strange feelings on my tongue, almost like numbness or tiny spasms, or as if there are hairs on the tongue or throat. the twitching / spasms come and go absolutely everywhere. Ive had some crampy feelings in various parts of my legs and feet and a feeling that my ligaments are shortening. i sometimes get a feeling that something is crawling on my skin. I also sometimes get a feeling that someone has flicked water at me. The tinitus has been a permanent fixture. The most bazaar thing though is above my left eyebrow... When i raise it, it feels odd and then feels like momentarily it doesnt drop down when i stop raising... Like i said, bazaar. that has now thankfully stoppedI have been back to my GP. He has listened, examined and says he can find nothing wrong. I have seen SEVEN doctors and a neurologist Doctor since November. I havent seemed these doctors out in an anxiety frenzy, i was passed from 1 to another as no one really had any idea what was going onMore recently, in the last three to four weeks, my arms have felt different, sometimes heavy, weak or cramped. If i make a fist and use power my entire arm tremors. this doesnt happen all of the time. This has been predominantly the right arm.The twitches \ spasms have latterly grown much worse. They appear all over the body, in particular my arms, but i get them in my lips, cheeks, and even in my ear drums i think!My doctor here in England is a fab chap, but is insistant that i am suffering from anxiety. Its like he cant see past that to see anything else.yes i am anxious, but i would doubt anybody who has felt ill for a long time wouldnt be.I have arrived on this site by internet recommendation. I am awaiting results of an mri ordered by a neurologist back in november... I could tell he ordered this in an attempt to plicate me. Thank you for your patience in reading this. Any advice or thoughts are most welcome. Happy christmas.
 
Hi EnglishdaveMy initial presentation was similar to yours. I remember waking at night feel a bit hot (not too bad) slight sore throat and thinking "I'm getting a cold" - but didn't. I did, however, get mouth ulcers just like you did, and a variety of "mouth issues" (white coated tongue, burning mouth) over the next few months. It seemed very much like Epstein Barr - I even had an EBV viral load test - which was negative. I also tested negative for just about every other testable virus out there (which is not to proves this didn't have a viral "trigger" - we can only test for a small fraction of all the viruses out there that are capable of causing disease to some extent).My fasciculations didn't start until 3-4 months had passed - and at that time, they were far less of an irritation than the burning skin, lethargy, fogged brain etc.I''ve also had the right sided "liver" pain which has persisted on and off to this day.I don't know, of course - but from what you've described, you have exactly what everyone else on this forum has. Although I'm a year further on than you, I still feel like a bit of a "newby" to this. That said, I've discovered a few recurring themes which may help.- most of the 'sensible" advice on this forum is along the lines of this illness has a mixture of physical and psychiatric causes. No, you're not crazy - but dealing with the anxiety side of things has helped many of us.- many people seem to get improvement around the two year mark. I'm 18 months in now, and while I still have bad days, things are definitely brighter than they were 18 months ago. There's no reson to suspect things won't continue to improve (albeit imperceptibly slowly!)- get on with your life. Come back here for support in those moments you need it.Cheers
 
Thank you for that. my twitching began about 3 months after my initial com plaint. I tried to divorce the two issues... but it wasn't until i looked at this site that i began to think they may be related?Thank you for taking the time to reply. kind regards and a peaceful new year.
 
Parasites come in all sizes many of which might I say most are microscopic. So we don't know for sure if we have them or not. I've listened to many symptoms posted and I am not diagnosing but what I hear certainly sounds like IMO some liver and/or gall bladder inflammation. I've had those also and for me I used Chinese herbs to clear any potential stones, sludge or inflammation.As to the parasite that invaded my body 21+ years ago, after confirmation with the Center for Disease Control in Atlanta, it finds its route into the American food chain from lettuce from South America. Often stays in the digestive tract causing havoc there but sometimes can migrate to the liver/gall bladder. And as commented before parasites carry viruses and bacteria. So one can get the whole unwanted package. Furthermore as we might know most viruses don't ever leave the body. For example....when people's immune system is weakened sometimes in upper years they break out with herpes zoster (shingles). This is nothing more (although not very pleasant - at all) the chicken pox virus we had as kids.
 
If you'all wouldn't object and would be open to taking part...I would like to design a somehwhat expanded BFS Survey similar to PBohan's. Actually we can work together. This survey would be a little more specific to narrowing down for example twitching to specific parts of the body. No one knows for sure whether some other symptoms are coincidental to BFS or part of it. There is no question that what is called BFS for the time being is a WHOLISTIC event which includes physical, mental & emotional causes. Some of which is primary and some of which is secondary. And it can vary from person to person as to which comes first. This suggestion is to place the facts as submitted for all to see so that 1) visitors know they are not alone and 2) maybe some conclusions can be drawn and 3) just maybe some additional relief can be found.My specialty for the past 18 years has been in synergizing two old traditional modalities used by many cultures around the world. I use them in relieving soft tissue compression pain syndromes - myofascial and musculo-skeletal pain syndromes...and they are highly effective in quickly relieving pain and instantly improving range of motion. Patients often ask --- will the pain come back? And the answer is....that all depends on what created the nerve compression. Was it one time blunt trauma? Is it from repititive stress sysndromes like a baseball pitcher? Is it from an endocrine disorder like type 1 diabetes? One thing for sure.....these type of pain syndromes CAN be quickly relieved.
 
let me say one more thing...if it is in fact anxiety, this searching will *beep* you over....the idea is to think less not more about it....i promise that as long as you go on these fact finding missions ur symptoms will continue to get WORSE! YOU HAVE BEEN WARNED.
 
MarioI don't really have a problem naming it an ything......just that western designations of many disorders are often nonsense and incorrect. Like carpal tunnel syndrome CTS. This is only partially correct. All the surgeons want to do is cut at the wrist but in FACT the disorder is more correctly and exactly called "multiple crush syndrome" because the radial nerve compression can also exists at the elbow and more frequently at or near the nerve root in the neck more correctly called radiculopathy. Then there is the INCORRECT naming of osteoporosis of say the left hip. IMPOSSIBLE! One can have bone loss of one hip but not osteoporosis since that disorder is sytemic. If one has it - they have it all over their body. Then we have CFS which is just another umbrella for what the medical community has no idea. One of the most rediculous is essential hypertension. 95% of everyone who has hypertension HAS essential hypertension. And what does that mean? The medical community has NO idea - so they call it "essential".43RichyThe43rd
 
There are ALWAYS more choices than just you and Mario mention. Lets not get stuck just because it might be comfortable or all you have found so far. Just because many have been through the ringer does not mean that they have thought of or tried everything. Amarcra is one such example of what is possible primarily through what can be called "awareness". It is certainly NOT the accepting and living with it and get on with your life that changes or corrects it. It is what is called "transcending". I thank her very much for reminding me. It is possible for all but quite a discipline. 17 years prior to 1981 I smoked cigarettes. I stopped for two years by what is called willpower which just created more tension and I was miserable and went back to smoking. Then I met my first acupuncture teacher in 1981 and with his instruction....... after just four months...... over one night..... my being-body "transcended" smoking. I know what withdrawal and addiction to nicotine was like and the next morning it was ALL gone. I never touched or desired a cigarette again. never had the urge. The instruction was simple.......which can be applied here. Just watch all your symptoms. DO NOT judge them, do not try to change them and certainly do not accept them as your own. Watch them 24/7 as if you were a third disinterested party....as a witness. That's it. No time constraints or predictions. Everyone is different.
 
Sounds like some sarcasm or turf attack. I would suggest that people who are medically uneducated how the body works should not be passing judgment on others who have background. Parasites from 21 years ago was my previous experience. I NEVER said that I had BFS then. Please read the posts carefully. What I said was that the ease of ingesting parasites through the food chain is one reason to mention parasites PLUS it is so EASY for parasites to pass through the digestive system, enter the blood and then exit the blood and infiltrate between muscles and screw with the muscles and nerves ANYWHERE in the body. You can wish them gone all you want.It would take a rare person to accomplish such a feat but it is possible that way.
 
It is not really that some ways are more effective than others.....just in and of themselves. It is that people are so different in their make-up that certain ways are just NOT for them. Certain people are over-thinkers and over-worriers and they need different help.
 
BTW for those who think they know anything about parasites...I thank you for the challenge for more information so I went back and looked up some current statistics.......over 60 million Americans as part of over 2.3 BILLION people WORLDWIDE currently have toxoplasmosis (parasites from cats *beep*) and don't even know it. And this parasite besides being MICROSCOPIC certainly can cause anxiety AND muscle problems. How many of us own or have owned cats or have been in contact with them?I had two for 17 years....the last one died not too long ago. Sure the stress of our baby was a lot but I can't discount the fact that I cleaned his liter every single day and I had to remove ALL of the liter from two large boxes just before I started twitching. Keep in mind I am NOT saying that this is what BFS sufferers have.....maybe just me.43RichyThe43rd
 

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