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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Treat ME now!

View attachment 11595
To the left you can see my wife Claudia when we were going to a dinner last summer. To the right is the day after.

My name is Mats, and I am from Sweden. My wife Claudia got sick in meningitis autumn 2008. She became really bad and was in intensive care for eight days. Claudia didn´t recover. She’s basically in bed 22 hours a day and she describes her feeling like she has the flue – every day.

Three years ago she was diagnosed with ME/CFS. She has visit several doctors. No one can help her. She got antidepressant medication, she was referred to a psychologist. She has completed a program where they want her to try to do a little more every day. She doesn´t get better- only worse. Standard tests at hospital doesn´t show any abnormal. Like many others ME/CFS sufferers.

The last year I have spent a lot of time to read studies about ME/CFS
Any attempt to take a holistic approach and work together doesn´t seem to exist. I have tried to find successful studies and I have actually found some.

Dr. John Chia discovered that 82% of all ME/CFS-sufferers have an active infection with enterovirus, a virus that can´t be easily identified in the blood, but in the cellular level. Over 50% of his patients, included his son, have been much better by his own developed antiviral medication – Equlibrant.

There are more studies showing that many ME/CFS-sufferers have active infections of Epstein Barr virus, herpes virus etc. There are studies that show that they feel much better with antiviral therapy. Several studies show that a subgroup of ME/CFS suffer from Lyme disease and its co-infections.

It makes me confused, why don´t health care do more? At the same time many psychologists etc continue to argue that you can be better by gradually increasing exercise (GET)? I don´t understand?

I am convinced that many more actually can be cured, and in any case feel better. It’s all about knowledge and ambition. I am very disappointed at the health care system!

Many cases of ME/CFS follow after a viral infection of some kind, it´s as if the body either cannot get rid of the infection, or that the immune response to the infection does not shut down when it should.

Except treating virus or bacteria, there are other important things to focus on

Leaking gut and toxinsOther evidence suggests that the combination of a chronic viral infection and gut bacteria produces a whole host of toxins that damage the immune system, hormonal system and nervous system on an ongoing basis. A dysfunctional immune system is a major part of ME/CFS. Heavy metal, chemical and mycotoxin has a huge negative impact on the immune system. Toxins released from gut can leak through the gut wall into the blood when the gut is damaged. It affect the immune system and the brain with free radicals and inflammations.

Candida
Candida is very common in people with chronic fatigue. The toxins they produce are also a problem for people in general, and ME/CFS sufferers in particular. These toxins can produce many neurological symptoms.

Autoimmune disease

Virus, bacterias and toxins weakening the immune system and making it more likely to attack the body cells.

Methylation cykle, gene mutation, histamine level… There are a lot of things to do!

I think more patients can be treated and recovered. There are of course a lot of sub groups and everyone needs individual care. The most important thing is that everyone who suffers of ME/CFS should be offered every test health care can offer. Doesn´t it make sense? What´s the alternative?

And here is a small video about ME/CFS for dummies:

Thank you!

Mats

Comments

Hi...I have been told I have candida. I am having trouble sticking to the candida diet but I guess getting rid of the candida is very important?
 
Please watch this video, if it feels right for you.
https://www.youtube.com/watch?v=6OdP8Jndnyk&list=PLaG8577BPQuvpCBYFWoyctez4T3MbEenv&index=1
The doctor I am currently seeing was trained under Dr Horowitz and everyday I thank the universe that I have him in my life. I'm taking only 1 pharmaceutical medication (low dose naltrexone) and the rest are very powerful herbal remedies by Pekana and Byron White.
Herxheimer Reactions, cytokines and food insensitivities is VERY important to understand in dealing with chronic conditions like cvs/lyme/fibro.

My best to you & your wife. It's beautiful you are such an advocate for her.
 
Your wife & I share a lot in common. I was a patient of Dr. Chia's for a short period of time & waited 8 months (in misery) to get an appointment with him. If asked to compare the doctors that I have seen throughout the years to him, I would rank him near the bottom. He has a very political platform and I received nothing from his medical expertise. I'm sure he has helped some of his patients, due to his popularity with the CFS crowd, but I wasn't one of them. He prescribed me a medicine for Alzheimer's. I am 44 and not a doctor, but I KNOW I do NOT have Alzheimer's. My appointments with him were filled with tears of pain, exhaustion and frustration. I foolishly took the Alzheimer's medication he prescribed and an anti depressant along with his Equlibrant and got worse. 2 weeks after seeing Dr. Chia, I sought out another doctor. I was desperate & searching for answers & listening to intuition. The new doctor reached over, grabbed my hand and said "Please do not take the Alzheimer's medication (Namenda) anymore. It's completely unnecessary and a very bad guess on Dr. Chia's behalf." A few weeks after seeing my new doctor, we received the new lab tests and I learned that I have Lyme and several co infections. I then found a specialist in Lyme & my health is slowly starting to come back together. My symptoms also started in fall of 08 (first diagnosis was chronic EBV, then CFS, Fibro, Lupus....) and are very similar to what you are describing. Conventional medical labs have a difficult time finding the Lyme bacteria and there is a lot of conspiracy around the subject but I URGE you to find a respected Lyme Literate MD in your area and at least rule this out.
 

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