Discussion in 'Other Health News and Research' started by hanchuchu, Nov 3, 2009.
Sorry if this has been up earlier but how is the ESR (erythrocyte sedimentation rate)?
Ok, I have all the stuff you mentioned too, except for the snake and worm sensation. I have the Hair loss, weight loss, red spots, breathing problems, etc....
I have been diagnosed by Dr Jose Montoya at Stanford University. I don't know exactyl what my diagnosis was, but I think it was something like CFS (I think after doing his Antiviral studies of CFS patients, he was going to write a new paper and call it something different from CFS) But for all practical purposes it sounds like what most people consider CFS here.
Albeit, CFS is different for many. i think it is safe to say, that "CFS" is kind of an immune disorder/nervous system disorder the way I understand it. Kind of why many people here are understandably upset due to the lousy name this inllness has been given. CFS doens't really give what we described real justice.
It will be interesting to figure out how you test for XMRV and what the coming research can do about all of sick folks, as we may all just be in the same boat. It may, in fact, move research along faster across the world with all the people you have contacted, and the recent awareness of XMRV. Hopefully we can all get some relief now that governments may have no choice but to finally deal with this, instead of kicking it under the rug.
I can say this though; I have lived with this horrible illness for 25+ years and don't plan on dying soon. I have a tough time getting out of bed out of bed some days, but it is not life threatening.
Hang in there, it may be a long road from here.
reply to your guys
Yes, the syptoms are almost identical. However, I still want to remind you the way of spreading. I don't know how you illness started. I don't want to argue what it is now. Since you have the contact in standford university, why not direct your doctor to this forum and let him to take a look. If he is interested, I will leave my email to you and coordinate the cooperation as well. Can you do me a favor?
I have sent emails to the one your recommended, no response yet. I send two emails to Judy in WPI. But she told me that she already has the blood sample from China. I don't know it is true or not. But since then, I won't bother her anymore. I think Charles is our hope. He can certainly find out the truth and I put my faith in him.
I don't think we have taken the test of your mentioned. I will check this out. I think the CD4 and CD8 indicates everything...
Sara, don't worry. Anyway, thank you.
I think we should share how to deal with this disease instead of speculation on what it is. Right? Mark is right. Different people show different levels of the syptoms, because the immune systems are different. all the infected experience worm sensation in China. But it will disappear for a period of time and then come back. I also want to mention many infected cough a lot. The sight will become weak and they claimed they cannot even open their eyes. But I don't have the cough and eye syptoms. Anyone of you experience the same? I think it could be something different from your illness. I just hope it can be cured, or else, I would rather die instead of living the rest of my life so hard.
I just lost a long response to your post. Hate it when that happens...Where is that "autosave" when I need it?
Here is a summary of my comments:
Us CFS'rs or XAND'ers or whatever we are, are just statistics on a spreadsheet at this point. Until there is enough business/political interest to move research foward. I am hoping that the WPI XMRV news is the catalyst to move this whole thing ahead after the 25+ years I (and many others) have suffered at the expense of the government who chose to ignore us way back when.
It comes down to politics/business now. HEre in the U.S., we are not a "demoracy" as the news would lead some to believe on TV or in newspapers. Businesses here in the U.S. heavily influence government, and businesses basically run the show. PLease watch the video I posted as another thread below about "genetically" engineered food and you will see what I mean about business controlling what happens in the world. How businesses will even discredit researchers, have them removed, if the news s not favorable to their cause.
It will take well organized large groups of people to move "CFS" research foward if the WPI news doesn't get the attention of the appropraite powers. So lets hang on for 6 months or so and see what happens with the WPI study findings and duplicate studies. If nothing is done then, we can all organize and try force governents to do something and get our message through then!
Mark, I cannot imagine how you survived 25 years...it could be a long nightmare, which I cannot accept. But individual's immune system is different, which means some people still can live a normal life. But some cannot.
I just hope the government can accept Charles' assistance.
John Chia replied my email, saying that it may be a new entervirus. Maybe i should take more tests now.
we are still waiting for the response from the CDC, whether they want to accept Charles' assistance or not.
Thanks for being with us for such a long time.
hanchuchu, Dr. Chia uses a product called Oxymatrine/Equilibrant and Cort posted a message that forum members can get free shipping for a limited time. You should be able to get the individual herbs in China. Here is the label:
Thanks, Kim. I think I am taking some of the herbs you posted.
Hanchuchu....great news about Dr. Chia! He is a BRILLIANT researcher and well respected in his field.
I have been his patient for over four years and his protocol for me is long-term/high-dose Anti-virals. My diagnosis is ME/CFS from multiple Enteroviruses.
He prefers that one add Immune-Modulators to the Anti-virals such as Oxymatrine, Matrine or Equilibrant (new supplement version in the U.S.)
He warns us to be VERY careful of the source of Oxymatrine as it can be dangerous if used incorrectly or from a "bad" source.
I have a Dr's. prescription for mine...but I hope Dr. Chia can "advise" you. Remember though - he is a U.S. Medical dr. (you are not his patient) - and we have strict laws here. The Equilibrant is available without a prescription - BUT, should be taken under a doctor's supervision.
Dr. Chia uses stomach biopsies to identify the specific Enteroviruses involved as there are many of them and only blood tests for a few (and it is difficult to detect in the blood)
Regardless of whether or not ME/CFS is caused by Enteroviruses....it's obvious that many of us have them, and they can be quite deadly - and cause terrible suffering and misery (as you have described).
Also, as I said before, they can be contracted/spread by contaminated water/food (as well as in other ways).
If you are able - go to Dr. Chia's website (EV MED RESEARCH LLC) and once there you can read patient info describing infection (timelines/vectors etc.) with Enteroviruses. (if you can't access this site let me know..I can print info out and mail to you so you can read).
There aren't any "quick fixes" if you have Ent's.....I may be on a dosage of anti-virals to suppress mine for the rest of my life (although not at the mega dose I use now)...but I have improved by this protocol, so there is hope!
Please do not discount this as a possibility - Dr. Chia has been researching this for well over ten years and has made many strides forward in research/treatments - he is the EXPERT!
I would be interested to know if he is able to follow up on this in any way.
By the way, do you regularly see any doctor for your disease? You can try researching Enteroviruses and Chinese researchers/studies to see if there are any Teams working on these viruses in your country.
thanks for the advice
Jackie, I understand what you are saying. The drug is available in China, but it is not safe actually. I will consult some doctor and see whether to take it or not. We don't have regular doctors, because it is still unknown. The hospital cannot help at all. Only traditional doctor will give us TCM to reactivate our spleen. I think I need to take more tests.
Kim, I checked the list of the herb. In fact, I am taking them, except the mushroom thing. many infected share their measures to tackle the problem and most of us are aware of the TCM.
I am still waiting for the response from the CDC. Sometimes, life is too hard...
In fact, John sent me the website thing. No need to mail.
I just heard Pasteur Shanghai will initiate the investigation the next week. I hope they can find something in the near future.
Christmas is coming. I hope everyone can have a happy time for family reunion.
Thank you all.
Thymopentin for Injection
Anyone use this drug?
Pasteur Shanghai just selected five people for test purpose. Obviously, it is only a trial prior to making the final decision to do research.
Everyone is waiting for the postponed CDC's test...
It seems like I have to use injections now to relieve the chest pain, which relieved just for less than one week and then come back again...
hanchuchu, I was starting to get worried about you - your safety and your health. I'm relieved that you are okay.
I pray that Pasteur Shanghai is able to help.
What medicine is in your injections?
Keep the hope,
Kim, I sent you an email.
Don't worry. I cannot update too often here, because no progress has been made. We are waiting...
I have not injected the above medicine yet, because I am afraid it has side effect. But if I get sicker, I have to resort to injections.
Thank you all.
I have learned to be in peace with fate and destiny.
So beautifully said, hanchuchu. The best we can do is accept whatever is to come.
No worries about being missing in action from here. I just got alerted because it hasn't been your pattern in posting here.
Sending prayers your way.
In the early days of AIDS, very few lived to see research and treatment options.
However, those who did survive used antibiotics to combat the secondary infections/symptoms caused by immune system destruction.
Specifically they used wide spectrum antibiotics, or antibiotics that will kill a wide variety of infectious diseases. Bactrim was top of the list. Based on the white furry tongue symptom, I would add a good antifungal like Nystatin or Ketaconazole. Also, if suffering from diahrhea and wasting (losing weight), find something for that. Do a search on AIDS by symptom and look for treatment options that you can get access to in China.
If you cannot get antibiotics in China without a doctor prescription you have two options:
1) Have a chinese doctor diagnose you with thrush (white tongue) and maybe bronchitis (lungs) and request a broad spectrum antibiotic for bronchitis if you can. Maybe you can find a compassionate doctor who is willing to work the system to help you. This would be the best option, if possible. Someone with an afflicted friend or family member maybe.
2) Order on your own over the internet. India offers cheap (by U.S. standards, probably expensive by Chinese standards) antibiotics over the internet - but do research on the companies to make sure they are reliable as there are also many companies who will take your money and never get you antibiotics.
So best help is the same as we in the U.S. have - mainly self-help to survive another day. Keep doing AIDS secondary infections and symptom relief research when you can and encourage others to do the same and share on the boards you are posting on. Translate what I have said here and put on the chinese boards and ask others to spread and share means and sources as discreetly as possible on where/how to get antibiotics, antifungals, and other effective treatments.
I would maybe consider antivirals as a last resort if nothing else is working. There are three or four problems with antivirals: costly, many are very toxic and dangerous to use, they only target one virus and usually not 100% and they are probably hard to find on your own.
But if you're facing death, what's a little liver or kidney damage from trying and anti-viral? Personal judgement call there.
One last note: Getting a doctor or doctors who will at least monitor blood levels for you would be very helpful to know you're not damaging your liver or kidneys and what impact if any the treatment is having on immune system markers. So even if you can't get doctors to treat you for AIDS like symptoms, tell them you have other diseases based on your symptoms that they will treat with antibiotics. You and others like you need to research most likely diseases you will be treated for and go for it!
I've got bad news: No one is coming to the rescue anytime soon that will make a difference here or in China. If you want to live, you're going to have to fight for it. Everyday little by little, things will change with persistence and then help will come, but you've got to figure out on your own as a community of the afflicted how to survive until that day comes.
Good luck to all those afflicted and God bless. And may help come sooner in your case than it has for CFS, Fibro, Lyme and AIDS. But don't count on it and take action accordingly. Reaching out on boards like this for suggestions is a great start.
Get on AIDS message boards and ask about treatments for specific symptoms that are antibiotic related or things you can get access to. Ask them for strategies - they're way smarter than us, as they have billions in funding and a "real" disease status and we don't...after 25+ years!
The only good thing CFS has going for it is it (usually) kills you real slowly, but what you have does not sound like you have that kind of time and nor do you want to use CFS as a model for how to get help. Clearly, we as a community suck at it so far.
On Thymopentin: Anything listed as an immune system modulator is EXACTLY what should help keep you alive if it works building back up your immune system faster than the disease tears it down. In U.S., it's very easy to find out information about medications by googling their name. Here's a link on thymopentin if it isn't blocked:
Hanchuchu, if you're really fighting for your life, you need to be less afraid of potential side effects from medications and take them. Simply monitor side effects with your doctor. Remember, doctors who kill patients tend to be unpopular, so they're going to try to stick to things that are reasonably safe. Make sure they monitor you if there are potential serious side effects as mentioned above. But if you have this already, what are you waiting for? Take it already or read up, decide it's safer than dying and then take it! And count that as a major success that you've gotten access to a really solid treatment option.
One symptom that is very dangerous if it goes unnoticed is anxiety and excessive fear or paranoia even. Things that normally wouldn't scare you totally freak you out when you're really sick and fatigued. A famous American Football coach made the observation that "fatigue makes cowards of us all". Remember that, and share that with others afflicted. Seek outside counsel from others as you are here and if you can, get antidepressants and/or anti-anxiety medications if at all possible. They can help alot.
thanks for the treatment advice
Hi, thanks for the advice. very helpful.
Yes, I am considering to take the anti-bioctics. I have no choice. The lung must be co-infected with some bacteria, which causes breath difficulty and chest pain. But As told by many TCM doctor--our spleen does not function well now and this explains the tongue syptoms.
We do share the way to tackle this disease, especialy the TCM taken. Finding the way to survive is the most urgent thing.
Pasteur shanghai has taken the blood samples from the infected. Hopefully, they can find something. I believe our blood definitely contains something horrible.
Thanks guys. I will hang there... hope and faith will help me get it through.
Is your tongue coated with a thick white/yellow carpet-like covering? It may be thrush (candida albicans) if it appears as creamy-white or bluish-white patches on the tongue - which is inflamed and sometimes beefy red - and on the lining of the mouth, or in the throat. If it's thrush, I know of a remedy: Kefir. Can I send you dehydrated kefir grains by mail?
Here's a story that I told about kefir and thrush when I first joined the forums.
Kim, I will check whether this is available or not in China. If not, you can mail me. I will pay you in advance, of course.
You can also try a Google Site Search
Separate names with a comma.