Thanks for your post. I will check out your website for sure. Thanks again.
I know your physicians are saying they can't do anything for you, but fortunately the CFS/FIBRO experts have all posted their treatment plans online. These physicians are very outspoken and are the voice for many CFS patients. You may want to check out my website, listed on my profile, or check out ImmuneSupport.com . I'm also aware of two research treatments that are set out to cure CFS --- one of them is Dr. Montoya's research protocol at Stanford University. The other one I'm currently on but any physician can prescribe the meds and in fact, two physicians had recommended it for me. There is also a research center that will open in Nevada in a couple of years. It is called the Whittemore Peterson Institute and the Whittemore's started this center because their daughter was diagnosed with CFS.
Check it out:
http://www.krnv.com/Global/category.asp?C=65026
All the best... I know how horrible this illness is, but I do have hope that there will be cure soon. In fact, their already may be.
I had mono back in 1984. A couple days after being diagnosed, my throat got so swollen that I could not swallow solid food. For two days, I ate soft yogurt, baked potato and other soft foods. The third day it was getting harder to breathe. My primary sent me to the ER, where they said that the sides of my throat were touching my uvula (that weird thing that you can see if you open wide and look in a mirror). IV prednisone took care of that and was discharged after two or three days in the hospital. However, I had to go to my primary every week for like three months for blood work, until I finally "recovered". EBV lies dormant and gets reactivated as a result of other infections, stress, etc. Two years ago, I felt like hell, so they tested me for everything. The only thing they found was high IgM (current EBV infection) and high IgG (past EBV infection). The docs told me it was reactivated, but they couldn't do anything for me. Since then, I feel either bad or worse on most days. I've tried diet modifications, supplements, pain medicine, wellbutrin, (insurance co. denied me lyrica). I've been to neuros, rheumatologists, infectious disease specialists, and others. the last neuro i went to said it's in my head (what a smuck!). If we were one of their kids or a senator or something, then they would do something. I pray for all of you that suffer from this horrible virus.
I agree with you that if yeast is just in the intestine or perhaps a vaginal infection, it would not cause immune dysfunction, but when in fact it goes systemic, I do believe it can cause immune dysfunction. I had said this to my doctor and the reason I gave him is because yeast is a fungi and fungi I believe will lower the immune system. What made me think of this is because the drug Prednisone is made from fungi and Prednisone as you know lowers the immune system. I was told by a doctor that I consulted with that when I attain Sustained Viralogical Response, I will remain in "remission" as long as I do not ever have to take Prednisone or any other drug that supresses the immune system. So for that reason, I told my doc, that as far as I am concerned, if I have systemic yeast, that to me is like my body is a Prednisone producing factory.
Interesting you said "gulf war syndrome." My dhea is through the roof - none of my doctors can give me any reason why it is high. Dhea - still not a whole lot known about it it seems. But I did tell my doc that the shock of hearing that I had HCV I believe gave me sort of a PTSD. I started studying that and I found a doc that said that alot of soldiers come home from War with PTSD and a High DHEA. I found that interesting.
Here is something that mentions Immune Dysfunction with systemic yeast.
Take care - I wish you the best. I will be laying low I think and not around much, this double dose of Interferon is knocking me down a bit - I guess it will take time for my body to adjust.
Thanks again for the info you gave me.
MO
http://www.lightparty.com/Health/HealingRegeneration/html/Candidiasis.html
Excerpt:(systemic -immune dysfunction)
"When the critical balance of Candida to bacteria in the body is disturbed, with Candida gaining the upper hand, we can develop symptoms anywhere in the body as a result of what progressive doctors call systemic candidiasis. This condition develops when the balance between yeast and bacteria is upset as a result of:
Immune dysfunction or disease
Upset in ratio of good to bad bacteria in the GI tract
Change in intestinal pH A number of factors can cause immune dysfunction:
Drugs, anti-inflammatories, cortisone, birth control pills, antibiotics, non- steroidal anti-inflamatory drugs."
Ps. I have alot of mercury and lead in my system that also could have contributed to the problem.
I think that yeast is certainly a problem, but I don't necessarily think it is the cause of immune dysfunction. I know in my case, it wasn't. I'm being treated for a chronic bacterial infection which has overrun my immune system and its ability to cope. I have a sub strain of mycoplasma and/or other stealth pathogens. Garth Nicholson, Ph.D. has done research on this in Gulf War Syndrome, CFIDS and I believe.. fibromyalgia patients. I'm guessing that is why recently a hospital in Phoenix, AZ started the first fibro tissue bank.
So you have heard of Dr. Cheney, that's great! He's on the mark, I wish all doctors would check out what he has to say. I looked at the video you posted and actually looked at the one that followed also. I want to look at the rest of them when I get time - maybe later. I am glad to hear that things are working out for you! I have HCV and the treatment didn't work though I am what they consider an easy geno type to treat - 2b. I was RVR (rapid viral responder) and stayed undetected through out (tx) treatment and looked like I would be 'cured' or lets say be put into remission. 4 weeks post tx I was still undetected of the virus, and then 8 weeks it came back - BUT NOT with a vengence which led me to believe that it was actually gone except for the few strays that are probably always left behind, but suppressed by the immune system(but my immune system didn't suppress them).......so I did NOT except the reasoning from my doctors that I fell into the 10% of someone that was an unlucky g2. Alot of g2's fail tx because they are A) underdosed b) stop too early C) fatty liver D) insulin resistant and a few other things (IMO) but I did NOT fall into ANY of those categories mentioned. This sent me on a mission. I was/am determined to see what is wrong with my immune system - so I started studying the immune system a bit and when I started to learn about TH1/ TH2, a light bulb lit up in my head and I started googling and to see if there was such a thing as being kept or stuck in one position. When I found out it does happen, I then made sense of what my Rheumy had said to me - "you have a humoral response." At the time, I was upset a test he had given me was not done correctly and so I didn't really bat an eye when he said that - well not too much at least but as I started piecing things together, and THEN found that this doc Cheney speaks of this - man I jumped 10 feet high off the ground knowing I was on to something.
FYI some people 'spontaneously clear' HCV on their own, without any drugs at all....That to me is the biggest clue to this disease hcv. I believe treatment of HCV is gone about totally wrong.....IMO in order to treat a disease - the "how," you must know the "why."
The doctors must be able to see (?) that the ones who spontaneously clear are the ones whose Th1 and Th2 can switch back and forth without a problem,,,,why is it that all people that have hcv don't have immune systems that switch back and forth? My answer is - this is just my opinion though - nothing factual.....IF you have other things going on in your body,such as Chronic Fatigue or as Cheney says some that have HAD at one time CFID can be stuck in a mode and not switch back and forth.....I first looked at it as the immune system was distracted from clearing the hcv cause it was fighting the candida or para's or something else, and I really do believe that is the case, but not being from a medical backround, I couldn't use the right terminology etc, but I would have hoped that the doctors would be able to piece it all together,,,,BUT If they think candida is not real science (as far as its effects on the immune system) - how can they "put it all together?"
Many of us that have hcv have candida unaware. Most women and even some doctors think that if you don't have a vaginal yeast infection or real bad oral thrush - well then you don't have candida.....IMO nothing could be farther from the truth! I def have candida in my small intestine but not vaginal and only because I have take literally a handful of probiotics AND a minimun of 4 tablespoons of inulin - several times a day, (I know it sounds like too much to take, but I am having to do that to prove to my doctors that I have intestional candida and yes the digital photos - 8 by 10 have had an impact on the doctors,,, I will do anything to get them to listen to me..including pics of what I have seen in my stool after taking tons of probiotics,, It was either me overdosing on probiotics or slitting my stomach and handing them my small intestines j/k... so I chose the mega dosing of probiotics. If you go to curezonedot com you will see what can come out of a person that does a flush. I didn't post any pics but I do have things like that happening. This "IMO" is why some of folks that have hep c relapse - the candida/parasites etc. Some people whose immune system is compromised cannot keep the candida in their body at a normal level....But heres the sad part. Alot of conventional doctors do not believe that candida can have such a impact on the immune system! Talk about being frustrated! yes I am....but I think I am making headway - pics don't lie.....If all conventional doctors would only believe that 80% of your immune system is in your intestines - then we would see more progress being made in medicine. Leaky gut from overgrowth of candida causes the food particles and even candida to travel thru out the body. This is how we develope allergies, autoimmune disease etc. Your body thinks that the food particle is an antigen and attacks it and then everytime you eat that particular food you will have a reaction or another way of looking at it is you are draining your immune system.... I probably am preaching to the choir - cause you probably know all this already "and more". Anyone with an open mind will look for the "why," before attempting the "how."
I just started my second tx. I am now double dosing interferon along with taking the antivirals.... I would love to have an appointment with a doc like doc Cheney. I am in the NYC area. Do you know of any doctors like the one that you are going to in my area?. I want to find out from a doc with that type of belief system if he thinks the interferon and ribaviron and Alinia (another antiviral - was used exclusively for parasites but now they are studying its effects on HCV) is capable of getting me out of the 'humoral response" (Th2) mode. My doc says yes, but he also thinks that candida doesn't have all this type of impact on the immune system.. So that is why I would like another opinion. I do love my doc, not planning on leaving him, but just want another opinion of a doc like the one you are seeing.
(I don't know how a doctor can say that candida doesn't impact the immune system the way I am saying,,,, when they are even linking MS, autism and other diseases to candida.)
I feel that the hep forums are good to a certain point,learned alot, but there is so much more to HCV....This hcv affects the entire body. Many with hcv suffer from autoimmune, CFID, FM, thyroid, diabetes and to continually just look at the disease from one angle, its time to move on for me. So in order to learn more about candida and things like that, I have to visit other forums where people are like minded and do believe that candida can cause problems etc. I might not be around much. I feel very fluey today from the interferon, but nothing that a little rest won't help. Any info you have or opinion on anything I said, I am open to suggestions - also if you think I am off or not correct in any of my opinions, and have a different angle or way of looking at it, please let me know.
You seem to know alot and I am curious how you found your doctor and was it because you figured this stuff out your self, like I am doing or were you fortunate enough to just find an open minded doctor who looks into the "mystery illnesses."
Talk to you again.
And thanks for posting that video. I want to look at the rest of them on there.
Take care,
MO
This is the research protocol that I'm currently on that treats Th1 inflammatory diseases. It is treating patients with sarcoidosis, rheumatoid arthritis, Sjogren's Syndrome, CFIDS and fibromyalgia. I'm happy with the progress that I've made so far, but still have at least another year or two to go:
http://www.youtube.com/watch?v=-FzYARFQ9ZE
Dr. Paul Cheney rocks. I've read his articles about cardiac problems in CFIDS patients. I have nothing but the utmost respect for Dr. Cheney and many of these other physicians who are educating so many others about CFIDS.
You may want to read what Dr. Paul Cheney says about CFID. He is very good - very knowledgeable.
http://www.immunesupport.com/library/showarticle.cfm/ID/4207/e/1/T/CFIDS_FM/
MO
I like to check out the latest research on CFIDS by checking out various websites. There are two, in particular, that are committed to finding answers for CFIDS patients. Immune Support and Co-Cure (org) are two of them.
EBV is re-activated by any kind of trauma to your system...for me, it's stress...as soon as I start to feel a little stress, immediately, my glands swell, I get a headache, and I become extremely fatigued. My doc says a lot of people have chronic EBV, but the reason there is little clinical data is because no one knows really when they have it, because there is so little known about it from regular docs. They say it's fibro or depression or whatever. For me they dx'd me with fibro. I had to search out on my own, because my rheumatologist knew NOTHING. He never even really ran any tests, I had to ask him to run bloodwork to see if my Lyme's or EBV was re-activated. He didn't know how to run the correct EBV test, so I had been told it was positive from an old infx. In actuality, my EBV was in a re-active state,but he had no knowledge, so I was misdiagnosed for a year.
You are correct you only get acute mono once but EBV can be reactivated under the right conditions usually some underlying condition. The CDC says chronic EBV for a period of more then 6 months should be investigated for CFIDS or other immune dysfunctions rarely does anyone really have chronic EBV It is often also reactivated with conditions like HIV and this can cause hight titers of EBV. I have been dealing with this for 3 years now and have found little if any relevant info on EBV. HIV on the other hand I have learned enough to fill a couple of text books so that should show you how little is known about EBV and there is no hurry for any cure either. I have talked to people who have it so bad it is like end stage AIDS (I fit in that category myself very scary stuff)
So really...for some people, they have mono once and that is it, but for others it can affect them much longer?
From what my primary doctor had told me, once you have had mono, you never get it back. However, I had also been told that you can have relapses for the rest of your life and it really can be a pain.
For me, this happens a few times a year...around the season changes, it seems, or when I have been under a lot of pressure or stress. I've been tested for everything from lupus to thyroid problems, and many other conditions, only to have the EBV test the only one coming back positive. I don't want to be sick, but I would like to have a diagnosis, if that makes sense? At least then, I'm not searching all the time for what the heck is wrong with me and why I feel like this so often. In between these flare ups, I often am tired and get fatigued easily, have trouble losing weight (despite eating healthy and really watching what I eat), have chronic aches and pains, etc. From what I have heard about EBV, it can cause all that. I guess next step is to figure out how to deal with it without medications.
Any thoughts on special diets for this to help with symptoms?
EBV is when Mono comes back, it's sort of like a subset of mono..I see a Neurologist/Immunologist for my Chronic Reactive EBV. It stinks, you never know how you will feel one day to the next. Definitely a life changing diagnosis.