I was diagnosed with CFS 12 years ago. I FINALLY found my answer and am feeling better then ever. Anyone who has been diagnosed with CFS or Fibro have to STOP looking in this direction. There is no cure and nobody knows where it comes from so why do Dr's keep going down this road. Because they don't know anymore then you do. I was diagnosed with Lyme Disease and started my own simple treatment and feel GREAT!!! I have more energy and little to no pain. Please, I have been there with CFS and am sick and tired of all the B.S. This disease along with Fibro do not exist. These are made up names because Dr's didn't know what to do. Lyme disease is the answer but you need to find a good LLMD(Lyme Literate Medical Dr) to get diagnosed. There is a cure for Lyme and I know where it came from. There is a cure for every disease. If someone tells you this its time to move on.
If there was a cure for all diseases as you say, then there would not be millions of people dying of cancer, aids, etc.
Just because there are no tests that will specifically show that a person has CFS or Fibro does not, by any means, mean that those illnesses do not exist - it simply means that medical science has not discovered "the" test to show them.
Think about it - hundreds of years ago, diabetes was thought to be a disease of the mind so to speak - not a "real" illness - something that was made up. UNTIL medical science discovered the link between the role of the pancreas and blood sugar.
Unfortunately, there are still way too many doctors that feel the same way you do - that fibro and CFS are not real illnesses - which only makes it that much harder for those of us that suffer from one or both of these illnesses to find appropriate medical care.
While I'm sure that some CFS/Fibro patients may have Lyme either in addition to Fibro/CFS, I don't feel it's correct in saying that Lyme is "the answer".
I'm sorry if I have offended anyone - I simply had to speak my mind on this matter.
I am sure we are all genuinely pleased that you have found your answer and feel so much better.
however, there are some of us who have had every test for every disease known to humans, animals and vegtables and who have come out with squeaky clean A-student passes. We really should be the healthiest people on the planet - except that we are just too exhausted to be pleased about it.
there may well be some people who have been misdiagnosed and I do agree that one more test wouldn't hurt.
but do spare a thought for CFS sufferers. Hopefuly it won't be too long before everyone has "the Answer"
All bodies are the same and if you find a simple natual treatment that works it will work for everyone. Do you know anyone who was diagnosed with CFS that is doing great or who has been cured? Probably not. If there are people out there who have been cured why would they be on here? This web site is for people who are still searching. Well, I am one of those persons who has found a cure and I am trying to tell people to change the way they think and try something that works not just something a dr is telling you to try because he/she has never had CFS/LYME/CF. Dr's have never been through it and they don't know the answers. I would rather listen to someone who's been through the ordeal then a smart dr who has spent 10 years in school.
99.9% of all testing for Lyme in the USA comes back negative so you have to find the specific labs to be tested because they wrote their own ptrotocol. It seems that you have been through everything so why wouldn't you try something that worked for
I understand your frustration. I've been looking for an answer for 20 years. I am only suggesting this to help because it works.
Not all bodies are the same. We come in all shapes and colours. Whose to say my blue eye genes and your green eye genes doesn't mean we will respond different to the same treatment.
I've heard claims like this before. When I was first diagnosed it was Guaifensin as the cure all for everyone with FMS.
If treatment for lyme disease helped you - then you were cured of lyme disease not FMS. You were misdiagnosed not cured of FMS. Just because the symptoms of the two conditions are similar does not make them the same illness.
Count yourself as fortunate for having an illness that could be cured. If you had come on here and said "I was misdiagnosed, being cured of lyme disease cured my FMS symptoms and it would be wise to get checked out" Then I'd be fine with you. To say there is a cure and it will work for everyone goes against logic and the experiences of centuries of medical documentation.
Over 2 years ago I was being told I had chronic fatigue syndrome which I didnt believe for a minute but as I live in a country with a public health system a second opinio can only be got by paying for it.And that I did, had no choice in the end but it cost me my savings and I'm now practically broke, unable to work although i'm hoping that will change with real treatment. Eventually I was diagnosed with psoriatic arthritis when it was determined that the mild rash I'v had for years was actually psoriasis and with THOROUGH history taking it was concluded that this is what I had. I'm replying to this post so that people will realize that doctors are not the gods that some of us stupidly thought they were especially in socialized health care systems where you have no say in the outcome of your care and are viewed as a troublemaker if you ? a diagnosis. I live in Ireland and sorry to say our health system is a disgrace at the moment and is being ran by people who all have the luxury of private health insurance.
Even though many people react to many different things and bodies are in their own way different. Fundamentally bodies are the same. We all need food, air, sleep. We all have the same parts & organs. I am referring to Sea salt/ vit c. If we all took the same according to our weight we may have different reactions and that is based on the kind of bacteria are in our body and where they are but in the end we will end up with the same result ... cured.
I think if everybody with CFS/FM or Lyme did the sea salt /vit c treat ment even though we may have differnt reactions we will all end up the same as cured. It worked for me and I know it would for you . You could start slow and if you have a reaction thats good. You have to go through a lot of pain before you can be healed.
Not all CFS is Lyme, not all fibromyalgia is Lyme, and while plenty of anecdotal reports of the efficacy of the salt/C regimen exist, it is not a standard treatment for the (very non-standard) disease of chronic Lyme.
As a person with long-standing Lyme that was late to be diagnosed, I'm thrilled to read any success stories, but agree with above remarks that some of the claims and statements here are over-reaching.
I am not sure I understand what you mean by over reacting? Anti-biotics are the (norm) for lyme but it is not a cure and never will be as long as long as we listen to the CDC or most dotors. Doctors will never give you a cure for anything , if they did they would be out of a job.. I have heard of a few people who have been "cured" from both coiling/rolfing and also sea salt/treatments. Including myself. I have been diagnosed with CFS and I have been diagnosed with Lyme and because I am using those non-standard as you call them.Its all about what works and not what Western medicine thinks. They are the really problem It seems you know of people too and have studied these treatments or have personel experiences to make those claims.
Of what use would my claim of knowing someone cured of Lyme, CFS, or fibro, be, other anecdotal support of my argument? This is a total stand-off; there is not enough reliable information to "prove" your point of view or mine.
When I say that I think your statements are over-reaching, I'm expressing my opinion that you are making broad generalizations. I don't believe that salt/C is as broad a cure as you, and I don't share your opinion that doctors have no interest in curing disease.
This is a patient forum open to discussion. I felt compelled to post an alternative point of view from a Lyme patient who also went un/misdiagnosed. If being sick taught me anything, it was a difficult lesson in compassion. Therefore, I try to be careful in what and how I post, and mean no disrespect to this forum or to you.
Your salt/C treatment is working for you, and I appreciate how much that means. I'm not totally cured, but greatly improved, from my treatment of (yet ongoing) long-term antibiotics. As you note, this is also non-standard and outside of widely accepted guidelines. So yes, I agree that it is a real problem to find good treatment, and it all comes down to what works and what does not.
The thing is I have heard many success stories people being cured from Lyme using sea salt and I have never heard one with anti-biotics. So, what I don't understand is why people use them. The dr.s that are prescribing these drugs have never ever cured anybody from them, again why use them. Plus they damage your body. Sea salt and vit c is water soluable and can't hurt you unless you overdose with them but so can antibiotics. again, it doesn't make any sense why someone would use them. I don't care what any dr. says. they don't have any answer either.
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