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Tue, Jun 25 8:19am · Can Mayo help with undiagnosed fatigue and brain fog? in Just Want to Talk

Hi @karina77 I'm curious if Mayo diagnosed you with chronic fatigue or Chronic Fatigue Syndrome. They are two different things. And how did they treat it? How are you doing now? Sorry so many questions! I have chronic fatigue syndrome and I am a healthcare professional. So I have a passion for educating others in the healthcare field. I have done a lot of research in the past year in hopes of publishing some articles in professional nursing journals to dismiss some of the misconceptions…. wishing you the best in wellness!

Fri, May 10 8:49am · Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Doctors in Just Want to Talk

Hi @karina77 Thanks for trying to help someone with CFS. It is often misunderstood by many. I chose not to go the Mayo route since their website isn't even up to date on CFS — continue to recommend cognitive behavior therapy and graded exercise therapy which in 2017 were proven inneffective or can even worsen the disease. According to the CDC it is a physical, multisystem illness. I have been on a lot of online support groups and have not come across anyone who said that Mayo was helpful with CFS. Some sufferers were even declined an appointment. I really dont want to sound all negative! Many have found improvement by working with functional or naturopathic doctors. If this person has other ongoing issues, maybe Mayo can help. We are all unique. I wish this person healing soon!

Wed, Apr 10 4:36pm · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

@diggydo27 Wups! My blog address above is wrong. It should be BackToLifeWellness.blogspot.com
Wishing you well!

Tue, Apr 9 1:40pm · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

Hi @diggydo27. I'm sorry you are feeling so poorly. I have dealt with recurring EBV and chronic fatigue. I'm glad your doctor recognized recurrent EBV. Some doctors don't. I cannot diagnose or treat, but I'd be happy to answer some of your questions and share some information I have learned. For more information on interpreting EBV lab results, I recommend https://ebvhelp.com/labs-diagnosis/ . Your ADHD symptoms are common in those with chronic fatigue syndrome and fibromyalgia. Sometimes it is referred to as "brain fog." There is also a theory that EBV can affect the vagus nerve which can cause some GI symptoms. There is a high percentage of people with EBV, CFS, or fibromyalgia that have GI complaints, leaky guy, SIBO. Most of our immune systems are in our gut, hence the connection. As far as your question about other doctors you should see — I would definitely keep your primary care doc informed on your condition and see GI as already recommended. I have found that most people dealing with this type of illness have better luck with an Integrated Medicine doctor, functional medicine doctor, or a naturopath. If you'd like to understand more about EBV, please feel free to check out the March post on my wellness blog at http://www.BackToLifeWellness.com. I share info on EBV from the unique perspective of the virus itself and intertwine part of my story. At the end of the post are several links that may be helpful. (I do not make money off my blog. There are no ads. It's there simply to educate the public on wellness topics :)) Oh, one more thing. You mentioned you have migrating pain. Have you been checked for Lyme disease? A good resource on that is Dr. Bill Rawls, MD (RawlsMD.com). I wish you answers and healing soon!! ……. ~Marianne~

Wed, Mar 27 7:29pm · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

@suesm. Hi Sue. I'm not a doctor so I can't diagnose. I can only provide information I have learned from my own experience and research. Given your symptoms of fever, left side pain, and neck pain, I'd highly recommend calling your physician and getting an appointment as soon as possible. Maybe you have already done that. CAEBV and reactivated EBV are used interchangeable many times which makes it all more confusing. From what I have read from the National Institutes of Health (NIH), CAEBV will show markedly elevated levels of EBV DNA in the blood (usually a PCR test). This test is different than IgG, IgM, and early antigen antibody tests. According to the NIH, CAEBV is a rare, severe form. https://rarediseases.info.nih.gov/diseases/9534/chronic-active-epstein-barr-virus-infection ….The classes you mentioned are expensive. I totally get that! Her book contains a lot of helpful info though. And if your doctors say every thing is fine and there is nothing you can do but rest, you can look into an integrative medicine physician. They are typical MDs who specialize in integrative medicine and are often a part of insurance plans. You could check with your plan and see if one is available. Continue to read all you can. Don't give up! I wish you well soon!!!

Tue, Mar 26 11:50am · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

Hi @luannkelly. I'm sorry you are going through this. I pushed myself for a year continuing to work full time and then had a relapse on a relapse and couldn't even sit up long enough to work so I had to quit my job in 2017. It has been a roller coaster ride since, but am working with a doctor now who had specialized in CFS/Fibromyalgia for 20 years. I am seeing improvements. You are right — stress makes it worse (good or bad stress) and you are NOT alone. You can read more about EBV and some of my story in the March post of my wellness blog. http://www.BackToLifeWellness.blogspot.com
I list several helpful links at the bottom of the article. I try to stay positive. Even though this illness has taken so much, it has also brought many of my blessings to light. I look at life differently. I wish you the best on this healing journey!……..Marianne

Tue, Mar 26 11:44am · Functional vs Integerative Medicine in Digestive Health

Hi @suemer . I am currently working with a functional medicine doctor. He works on getting to the root cause of my illness. For example, I was having obvious low cortisol symptoms — debilitating fatigue, salt cravings, increased thirst, hypoglycemia and more. The endocrinologist however simply looked at my blood work and since my cortisol was in the "normal" lab reference range, he dismissed me. A functional medicine doctor will look at the entire picture and take in to consideration optimal levels. My cortisol and other labs were NOT at optimal levels. Anyway, those issues are now being addressed and I am seeing improvements. I think there is a Functional Medicine Clinic that is part of the Cleveland Clinic. I am not sure about the Mayo Clinic though. I have been dealing with recurrent Epstein-Barr and Chronic Fatigue Syndrome. From what I understand, Mayo does not deal with those things. In fact, their website info is not even up to date with the CDC when it comes to CFS. I'm not sure if this is helpful. Hopefully others will chime in. I wish you the best in your healing journey.

Tue, Mar 26 11:36am · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

@mariajoyce I agree with @cnoto on The Epstein-Barr Virus Solution book by Kasia Kines, PhD. There is also a lot of info on her website at http://www.ebvhelp.com. So you had a stem cell infusion? Wow! I haven't heard from anyone who had that done. From what I've read it is usually for those with the severe chronic form with markedly elevated PCR (EBV DNA in the blood). Your doctors should give you some sort of direction on where to go from here. However, if not, read all you can and don't give up. You mentioned hair loss. That can be from a number of things. You may want to have a ferritin level checked. That checks for iron storage. Optimally it should be at least above 50. Hair loss can also be due to low thyroid as well Unfortunately typical doctors only order a TSH and maybe a T4. Ideally, they should also look at Free and Total T4 & T3, Reverse T3, and specific thyroid antibodies. I have learned this from reading info from different functional medicine doctors. The adrenals can also be running low due to the chronic infection. That has been my problem. An endocrinologist totally dismissed my symptoms, but thankfully I am working with a functional medicine doctor who is treating me and I am seeing results. I realize there is a lot of info out there. I spent a lot of time researching and reading over the past year as energy allowed. The March post on my wellness blog is about EBV with several links listed at the bottom of the article. Check it out if you'd like. I wish you well soon!
BackToLifeWellness.blogspot.com