Is it a new disease or its CFS ?

[Sushi]

Sherezade

I don't think we can assume that we are all "infected" with the same thing. Dr. Chia is probably discussing "typical" ME, and it is possible that you have some other condition. Not that this is very helpful! But I don't think the type of "infections" he has been studying are universal in the patient group in this forum.

Sushi

 

[Hip]

It took him 3 years as the last time you mentioned this !

I know Omar, I am bending the truth a little here..... just trying to provide an optimistic outlook for people that may have just caught this Chinese "HIV-like" virus.

In fact with Hanchuchu, it took 2 years with the virus before the he started getting better. He then continued to improve over the next year, and and he said that after 3 years, he was substantially better. We exchanged more than 300 emails over this period of 3 years, so I know his story well.

 

[patient.journey]

I know Omar, I am bending the truth a little here..... just trying to provide an optimistic outlook for people that may have just caught this Chinese "HIV-like" virus.

In fact with Hanchuchu, it took 2 years with the virus before the he started getting better. He then continued to improve over the next year, and and he said that after 3 years, he was substantially better. We exchanged more than 300 emails over this period of 3 years, so I know his story well.

Thanks Hip you are giving us a push

 

[patient.journey]

Thank you sushi, i watched the video and listened very carefully. As i understood Dr Chia thinks that this disease is only infectious in the acute phase and not in the chronic phase. But i respectfully doubt that observation based in my case. The guy that infected me was obviosly in his chronic phase, i think he's been sick since long before. He doesn't drive himself and i think he's got some degree of dementia already. He is a very agressive person.

Anyway, i will consider the words of Dr Chia seriously because he is the experienced doctor, and specially because i can't live with the guilt of being infecting other people. I need some peace to my mind.

Doctor China was talking about specif stuff (entrovisues) and its look like we are not in the same group like typical ME/CFS patients so we need to make our group and start to search for our illness cause

 

[collegeusername]

I wouldn't jump to the conclusion that we're not in the same boat as ME.CFS patients. Many of them are in that category because they suffer "generalized" or "nonspecific" symptoms - like myself, and those are the very same symptoms we're suffering from. the only difference is that our symptoms seem to have more particular symptoms.

 

[Sherezade]

I know Omar, I am bending the truth a little here..... just trying to provide an optimistic outlook for people that may have just caught this Chinese "HIV-like" virus.

In fact with Hanchuchu, it took 2 years with the virus before the he started getting better. He then continued to improve over the next year, and and he said that after 3 years, he was substantially better. We exchanged more than 300 emails over this period of 3 years, so I know his story well.

Hi Hip, do you happen to know what kind of treatment Hanchuchu did? It would be nice if he would share with us what he took to get better. Thanks in advanced.

 

[Hip]

Hi Hip, do you happen to know what kind of treatment Hanchuchu did? It would be nice if he would share with us what he took to get better. Thanks in advanced.

Hi Sherezade

I know that Hanchuchu took anti-inflammatory Tibetan herbs, and these helped eliminate the constant severe chest pain that virtually all the people with the Chinese "HIV-like" virus experience. So try some anti-inflammatory herbs; you might also benefit from them.

But after a while, Hanchuchu stopped all medications, because he saw that his body was healing itself.

Though not all his symptoms disappeared. Some symptoms remain. Hanchuchu said the symptoms that he still has are: sore throat, skin symptoms, joint pain, liver pain and teeth symptoms.

I have also spoken to other people in China that appear to have the same Chinese "HIV-like" virus, and they also seem to get much better after a few years. It seems to be a common experience to have a one or two years of hellish symptoms when you first catch the Chinese virus, but after this time, the body starts to fight off the virus, and to heal itself to an extent.


Another Chinese "HIV-like" virus patient I know from his posts on my blog (his online name is "Victore" on my blog) said he is now much better, and he only has the following symptoms remaining: crepitus (popping sounds in the joints), white tongue coating, reduced half-crescent (lunula) in fingernails, swollen lymph nodes at the back of the neck, low-grade fever (37℃), but only during the day, twitching muscles (benign fasciculation syndrome), and subcutaneous nodules.

 

[Survivor84]

Hip
all these people caught the virus the same way you did? All by saliva?

 

[Hip]

Hip
all these people caught the virus the same way you did? All by saliva?

The people that post on my blog you mean?

Yes, often through kissing on a date, or by normal social contact. During normal social contact, you can pick up someone else's saliva or other respiratory secretions. That is how cold and flu spread.

Though I don't think the virus described on my blog is the same as the Chinese HIV-like virus. My virus produces very similar symptoms to the Chinese virus, including extreme anxiety, chronic sore throat, skin symptoms, but there are some differences.

In particular, nobody with my virus gets the severe chronic chest pain that almost everybody gets with the Chinese virus. And nobody with my virus get the twitching muscle symptoms that are common with the Chinese virus.

 

[Survivor84]

The people that post on my blog you mean?

Yes, often through kissing on a date, or by normal social contact. During normal social contact, you can pick up someone else's saliva or other respiratory secretions. That is how cold and flu spread.

Though I don't think the virus described on my blog is the same as the Chinese HIV-like virus. My virus produces very similar symptoms to the Chinese virus, including extreme anxiety, chronic sore throat, skin symptoms, but there are some differences.

In particular, nobody with my virus gets the severe chronic chest pain that almost everybody gets with the Chinese virus. And nobody with my virus get the twitching muscle symptoms that are common with the Chinese virus.

Hip
How did Hanchuchu get this virus?
By the way I just emailed your website link to prof. Nicolson, that is amazing all those stories, I cant believe all those ppl being affected by that virus. I wonder if there could ever b a cure seeing as thought it is a virus.

 

[Sherezade]

Thank you hip.

Guys, I found this and i thought it was worthed to share with you:

Mercury Poisoning & Heavy Metal Toxicity


Description

Primary heavy metals responsible for toxicity include mercury, lead, aluminum, antimony, arsenic, and cadmium, as well as excessive levels of essential minerals such as copper and manganese.

Chronic heavy metal toxicity (versus acute occupational exposure, which is more traditionally understood to be a problem) is much more common than widely believed and a significant contributor to chronic illness. Conservative estimates suggest that up to twenty-five percent of the U.S. population may suffer from heavy metal poisoning to some degree.

Symptoms can include:

- Difficulty thinking/concentrating/remembering
- Fatigue
- Indigestion, constipation, diarrhea, abdominal pain, etc.
- Muscle pain
- Anemia, pallor
- Low blood sugar (hypoglycemia)
- Poor coordination, dizziness
- Increased susceptibility to infection (fungal, bacterial, viral)
- Loss of sensation (touch, smell, taste, hearing)
- And more...

Since heavy metals disrupt the transport and utilization of essential minerals that are critical to chemical processes throughout the body, the metals often affect several of the body's systems. The signs are often vague and may be attributed incorrectly to other conditions, such as:

- Allergies, asthma
- Autism, ADD/ADHD, OCD
- Chronic Fatigue Syndrome, fibromyalgia
- Alzheimer's disease, Parkinson's disease, ALS
- Anxiety, depression, eating disorders, schizophrenia
- Autoimmune diseases - rheumatoid arthritis, lupus, multiple sclerosis
- Digestive disorders - Crohn's, colitis, irritable bowel syndrome (IBS)
- Heart disease
- Hormonal imbalances - thyroid, adrenal, sex hormones


Causes

Toxicity results from environmental exposures to heavy metals. Potential sources of exposure are numerous, including:

- Dental amalgams
- Seafood
- Drinking water
- Vaccines
- Old paint
- Industrial emissions - e.g., coal and cement plants
- Cigarettes
- Personal care products - e.g., deodorants
- Cosmetics
- Fire retardants - e.g., children's clothing, bedding
- Etc.


Treatment Approach

- Identify and eliminate potential sources of heavy metal exposure in the individual's environment.

- Test for heavy metals and disordered mineral transport - e.g., hair, urine porphyrins, red blood cell elements.

- Supplement to support the body's natural metal detoxification pathways and to restore normal levels of essential nutrients.

- Safely reduce existing heavy metal levels in the body using proper oral chelation.

- Reduce/avoid foods that the body may not be capable of digesting properly and/or may be contributing to poor cognitive and immune function (e.g., allergens, food additives, trans fats, sugar). A diet higher in protein and vegetables, lower in sugar and refined grains, and organic whenever possible, will tend to be helpful.

- Address existing chronic infections (bacterial, viral, fungal).

- Support endocrine function (adrenals, thyroid, sex hormones).

Here is the link: http://www.marcjosephnutrition.com/mercury-poisoning-heavy-metal-toxicity.html

I don't have mercury amalgams in my teeths, but i had many vaccines as a kid and i eat a huge amount of seafood and fish, which i love! also, I'm a heavy cigarrettes smoker. I wonder if maybe i have some heavy metal intoxication that is creating some of my symptoms or damaging my inmune system and that's why i'm having so much trouble fighting the whatever pathogen that i caught.

I'm going to ask if there's a blood test for heavy metals.

 

[Sushi]

Sherezade

Many of us have or have had mercury toxicity, it does making treating other conditions more difficult and getting rid of the mercury is a difficult process itself. And yes, there are tests for mercury--some of them are "provoked" meaning they give you a dose of something that will chelate mercury and then measure how much you excrete in urine.

The provoker (often DMPS) can be tough for some people. So some patients take the test unprovoked. There is some controversy about which method is more advisable.

Sushi

 

[Hip]

Hip
How did Hanchuchu get this virus?
By the way I just emailed your website link to prof. Nicolson, that is amazing all those stories, I cant believe all those ppl being affected by that virus. I wonder if there could ever b a cure seeing as thought it is a virus.

I can't remember how he got it.

Note that I cannot know for sure that all the people on my website have the same virus as me, as there is no way to test for this virus, and the people who post my site come from all over the world. Some of these people may have other infectious pathogens that produce similar symptoms; though I suspect that many on my site do have the same virus. And some of these Chinese people there have the Chinese "HIV-like" virus.

The only people that I know for sure have the same virus as me are the 30+ friends and family members who unfortunately caught it from me. These 30+ people all displayed some very classic symptoms of my virus. All the data on my website comes from observing the symptoms in these 30+ people who have my virus, as well as observing myself.

So my site is reasonably scientific, in that I had a group of 30 infectees to "study", and could therefore provide some statistical information by examining this group of people (statistical information like that fact that only about 10% of people with my virus will experience severe symptoms, like extreme anxiety disorder; 90% will just have mild symptoms).

 

[Sherezade]

Sherezade

Many of us have or have had mercury toxicity, it does making treating other conditions more difficult and getting rid of the mercury is a difficult process itself. And yes, there are tests for mercury--some of them are "provoked" meaning they give you a dose of something that will chelate mercury and then measure how much you excrete in urine.

The provoker (often DMPS) can be tough for some people. So some patients take the test unprovoked. There is some controversy about which method is more advisable.

Sushi

Sushi, according to your experience do people that go under chelation therapy get better? I was reading about the side effects and they are pretty scary.

 

[Hip]

Sushi, according to your experience do people that go under chelation therapy get better? I was reading about the side effects and they are pretty scary.

There has been quite a bit of discussion on this forum about mercury and heavy metal toxicity in ME/CFS, but nobody ever seems to get any better by mercury detoxification, or by removing the mercury dental fillings from their teeth. So it seems like it is not really worth worrying about mercury.

Perhaps you can comment on this, Sushi.

The only thing I do is avoid eating tuna fish, because tuna contains a lot mercury.

 

[taniaaust1]

There has been quite a bit of discussion on this forum about mercury and heavy metal toxicity in ME/CFS, but nobody ever seems to get any better by mercury detoxification, or by removing the mercury dental fillings from their teeth. So it seems like it is not really worth worrying about mercury.

I know Ive read (at least) two cases at the PR forums of where someone here got better or it really helped, from having mercury dental fillings out.

 

[Sushi]

Sushi, according to your experience do people that go under chelation therapy get better? I was reading about the side effects and they are pretty scary.

As hip has said, there has been a lot of discussion of this and no clear answers. However there is evidence that mercury and viruses have some relationship (forget, but mercury can "bind" viruses, maybe?)

Mercury is definitely not good for us but getting rid of it is also difficult and usually brings uncomfortable side-effects. Some doctors do think that we won't get well unless we deal with heavy metal toxicity, but again, no clear answers. Others can share their experience.

Sushi

 

[Hip]

I know Ive read (at least) two cases at the PR forums of where someone here got better or it really helped, from having mercury dental fillings out.

True, there are a few stories of mercury fillings removal helping. Trouble is, because a lot of people report no change after removing their mercury fillings, you don't know if was just a coincidence with these few people that it did help, or whether it really did work for them. Unlike taking a medication, you cannot perform start–stop testing on dental mercury (that is, you cannot really put your mercury fillings all back in again, to see if you then get worse once more). I like to do start–stop tests on the treatment that I think may be helping me, just to have proof that they really are helping.

The only way I can see that you could reliably test for the effects of mercury is to eat a lot of tuna fish for a few months (which contains a lot mercury), and then see if you feel worse. And then stop the tuna, and see if you feel better. Then repeat the test again, just to be sure. But I am not going to volunteer for that experiment!

I think if mercury is causing a problem in ME/CFS, it will not be due to mercury toxicity, as the levels of mercury in our bodies will generally be too low for that, but rather be due to something like mercury's ability to worsen virally-induced autoimmunity, as described in this study.

 

[urraco2012]

As hip has said, there has been a lot of discussion of this and no clear answers. However there is evidence that mercury and viruses have some relationship (forget, but mercury can "bind" viruses, maybe?)

Mercury is definitely not good for us but getting rid of it is also difficult and usually brings uncomfortable side-effects. Some doctors do think that we won't get well unless we deal with heavy metal toxicity, but again, no clear answers. Others can share their experience.

Sushi

I already had problems with my stomach, nose, dry eyes, dry boogers when I caught this. Maybe for some toxicity problem that facilitated the entry of some virus or bacteria? who knows, but this clearly is an infection, considering the acute period, low fever, swollen glands, rash, etc... difficult to made to understand even a health professional but too evident to those who experience it.

 

[patient.journey]

I wouldn't jump to the conclusion that we're not in the same boat as ME.CFS patients. Many of them are in that category because they suffer "generalized" or "nonspecific" symptoms - like myself, and those are the very same symptoms we're suffering from. the only difference is that our symptoms seem to have more particular symptoms.

To make it more symbol CFS/ME is an umbrella people with multiple Viral, bacterial infections are under it ! while those different infections provide similar symptoms with some differences people like to have any diagnose while they don't have it so they all get under this criteria to have some relief without knowing the reality about their illness !!