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Not sure if the web address will post as listed above, so I'm also trying it this way: curezone . com / blogs / fm / asp ? i = 968622 There are no spaces in the address of course, just trying to beat the system. LOL It may get ***** out anyway. But I found it interesting information. I just know that I don't have lyme disease because it was one of the MANY things my dr tested me for when I went to him complaining that I couldn't tell him how much nyquil I had taken over the prior 3 months trying to ward of the flu I thought I was coming down with and nothing helped me gain energy during the day.
Well, the simplest thing like Sea salt/Victamin C worked wonders(I also did coiling/Rifing but thats another story). I read your profile and I would recommend you starting it asap. Its simple, inexpensive and will change you right away and it won't interfere with any drugs your taking because it is natural and water soluable. If you ask your docotor your doctor will tell you 1) You don't have lyme 2) the sea salt /vitamin C treatment will not work. I am telling you it worked for me and I suffered for years(it will work for everyone because all bodies are the same as far as the sea salt and vitamin c is concered). Your not getting any better so why are you still listening to your doctor? If you want your life to turn around let me know and I will tell you what changed me. Thats why I am on here because I am sick and tired of our health industry in this country. Its all about money and not the patient.
Ok, I understand you are passionate about it and I have heard that only Igenex labs should test for Lyme. What worked for you???
I just threw that number out there. My opinion is that 100% of all CFS/CM are lyme. The CDC has written the protocol for the testing of lyme and they wrote it so that almost everyone is negative. Well, a lab called Igenex has written their own protocol and are more accurate. The thing is if you have one positive band in your IGG or IGM test you have Lyme. Anti-biotics don't work and are not the cure. I was on them and everything I read and all the people I know have never been cured from them. 99% of the docotrs out there don't know enough about Lyme to even comment on it. I know more then most Dr's. This has consumed me since I was diagnosed.
Where is the proof that 99% of all cases of Fibromyalgia are caused by Lyme disease? I am not ruling it out since I haven't been tested and I actually wrote it down to discuss at my next doctor visit. I am just questioning the validity of the 99%. I have read about the connection with Lyme disease and Fibro. My neurologist has told me that my active Epstein Barr Virus is causing my Chronic Fatigue and Fibro. I am currently on a medication for my peripheral neuropathy (which is real) that should help with the Fibro. I also have read up on supplements to help and am taking those as well. I see my primary in about 2 weeks and plan to ask her about Lyme disease and also insulin resistance. I would like to feel much better so I don't rule out anything.
Just reading your earlier comments sounds like you have lyme. Have you ever been tested for lyme? If so, have you ever been tested by Igenex lab?
Well, if 99% of all cases are lyme I wouldn't consider it a mistake. What is your's caused by if I may ask? Is there a cure? What are you doing for it?
I am sorry, I think you are mistaken in that CFS and FM are both misdiagnoses of Lyme. Yes, sometimes, people are given those diagnoses and they actually have Lyme, but that does not apply to everyone in the world who has CFS and FM. Mine is caused by something else completely. I am glad you are pain and symptom free, that is a good thing and yes, you have to rule out all other underlying conditions, but sometimes, there isn't one.
I was diagnosed with CFS 12 years ago and as far as I know not one docotr knows what it is or where it came from. 6 months ago a person suggested Lyme. I got tested by 1 of only two labs in the country that are qualified to test for Lyme(Igenex labs) and I tested positive(so for all you who say you've been tested for Lyme..you haven't...you've been taken for a ride thats it). I am now almost completely pain and symptom free. CFS and FM are both misdiagnoses of Lyme(along with other neurological disease's out there). We know where Lyme came from(and its not a tick) and there is a cure but there is no cure for CFS or FM(and they don't even know what it is). If there is no cure you have to ask yourself it has to be somethig else. Becasue there is a cure for almost everything.
I would definitely use that book, Beat the Sugar Habit. I was diagnosed with fibromyalgia and got of sugar and it helped a great deal. My endocrinologist has figured out that I have insulin resistance and she believes that is the cause of my fibromyalgia. Insulin resistance is what I believe is what most fibromyalgia is caused from. Insulin resistance is an inability to use your insulin that your body produces. You can't break down glucose, which gives your body energy. Having this condition causes a sugar imbalance and will make you crave sugar and carbs. The lack of glucose broken down into our cells will cause muscle pain, brain fog, fatigue and many more problems. I suffered from so many different things. I kept getting bladder spasms and bladder infections all caused by the blood sugar imbalance. Go to an endocrinologist and asked to be tested for insulin resistance.
First, relate to your nickname! I agree, CFS, from what I understand, typically isn't accompanied by so much pain. Fibromyalgia sounds more likely. However, while I know what a tremendous relief it can be to discover what seems to be a name for the mysterious symptoms people get, at the same time, let me throw out a caution. CFS/Fibro/PN/ME etc, etc, all have cross-over symptoms with each other AND other conditions. It's extremely important that you find a Board Certified Rheumatologist who actively treats and studies CFS/Fibro. He/she should actually touch your body in the exam to identify specific clinically observed markers for the various conditions AND at the same time, run the appropriated tests (like an extensive blood panel) to eliminate some of those other diseases which come with similar symptoms. One example of such a disease which might fit is Lupus. The treatment for Lupus and the long-term effects you can expect and look for are different than CFS/Fibro. It is all too common for doctors to chunk a patient into the CFS/Fibro categories rather than undertake an all out search for other causes. These conditions have often been referred to as "wastebasket" diagnosises. You don't want to find yourself down the road failing to get the proper treatment due to an improper diagnosis. That being said, I'd like to remind you how important you are. I know, we don't know each other. But I'm serious. If you don't know that, you won't advocate for your own health with doctors and people in your life nor will you adopt personal behaviors that will help you cope with any of these conditions. The sooner you ACT to properly identify your condition, build a team and build a plan of action, the easier it will be for you over the remainder of your life. I really know this to be true. So, the very best of luck to you. I hope soon your nickname changes to "Defender" of your health!
I won't go into my whole story, but I have been diagnosed with Chronic Fatigue Syndrome and am currently going through a battery of tests, blood work, nuclear bone scan. Two of my symptoms, are chronic pain in my shoulder/neck area where I can hardly put a shirt on (just like you) and my ankles/feet hurt so much all the time. (sounds like you). You might want to see your primary and go to a rheumatologist for a checkup. I also am seeing a nuerologist that just diagnosed me with peripheral neuropathy. So please get checked out too. I don't know yet what else might turn up, maybe nothing, but it is good to be thorough so that you can be treated. CFS is hard enough and then adding something else to it. I will be thinking of you. Let me know and I will post on here after I see my doctor next week.
I dont mean to be rude, but if you've had chemo and happen to be over weight. how do you know you have CFS? you could have fatigue from both of these things that doesnt mean you have CFS. If you're in that much pain it could be fibromyalia but it could be many things, and fibromyalia doesnt mean you have CFS. I hate to say it but the pain that you're having by putting on your shirt and putting on your shoes isnt normal for CFS...though everyone is different....I think something other then CFS is causing your pain. (I dont mean to be rude but I have CFS and only can go based on what I go through and the med. groups I'm apart of and doctors Ive talked to)
Thanks - I found out that Dr. Teitelbaum has another book on CFS/Fibro called "From Fatigued to Fantastic" - going to get that one too. Does anyone have any other resources? Specifically books written by doctors? (Oh, and the link was blocked out, it's "endfatigue *******")
This is very interesting! Thank you for posting this information and the link!
Hope you find relief soon!