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  #1  
Old May 5th, 2009, 04:37 AM
Jimbo Jimbo is offline
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Default CMV Colitis - Alternative Treatments?

I'm looking for any help/advice on my recently diagnosed cetamegalovirus (CMV) colitis. I've had it for a few months now after testing "HIV positive" last November. Online I can only find mainstream articles discussing ganglovir and other pharmaceutical options. Has anyone recovered from this condition or even heard of anyone recovering from it, or will my only option be the pharma one?
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Old May 5th, 2009, 04:31 PM
lightanddarkbalance lightanddarkbalance is offline
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Default Re: CMV Colitis - Alternative Treatments?

Jimbo,

Colitis is incurable with Pharma treatments - why then would anyone choose this system ? Worse then being incurable the treatments used always damage the overall health and lead to progressive health deterioration.

You question asks if there are any other choices than pharma is upside down - there are many choices and pharma is not one them - phama is only to be used as a last choice in emergencies or acute conditions where it can be useful, but always on a short term basis.

To learn what causes the inflammation that creates colitis you can get a quick education on youtube - search under Dr Dahlman, then watch his IBS videos.

You can get well with alternative medicine - there is no chance of getting well with pharma.

You also need to realize that this arguement of effective healing medicine verus inefective dangerous medicine holds true for all things including CMV - Be very very careful of what type of medical system you use - pharma is always the last choice !
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Old May 10th, 2009, 05:42 PM
Jimbo Jimbo is offline
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Default Re: CMV Colitis - Alternative Treatments?

Light and Dark: thanks for your reply. From having spent the last week researching alternative treatments (mainly diet and supplements) for both AIDS and colitis, I'm much more reassured that the alternative approach is the way to go. However, the GI doc's assistent who called me with the diagnostic very stridently urged me to see my GP, to whom my results were reported, so he could refer me to an "infectious disease specialist". I know pretty well what will happen if I do that - from the many stories I've read on this forum.

The AIDS angle to this is freakiing me out. Between the stress and the diarrhea, I've lost 5 pounds in the last 7 days. Prior to being told that CMV was the type I had, I was researching colitis treatments using an all-diet andsupplement approach, mainly Elaine Gottscall's Special Carbohydrate Diet (SCD) described in the book "Breaking the Vicious Cycle". Her book is very convincing and well written, but only mentions the traditional GI diseases. But will this approach work with a colitis that is allegedly caused by CMV?

I've also looked into Dr Dahlman's equally convincing material. He is a holistic doctor who claims a lot of success in curing IBS/colitis/Crohns. In an email response he assured me the program would work for CMV colitis. The price for his program is a bit steep ($1500 over three months including phone consultations and probiotic and enzyme supplements). He also requests his patients to discontinue all supplement taking, which might be a problem for me.

I've just started on Jonathan Campbell's protocol for AIDS, which includes about 30 supplements taken in mostly megadoses. For the past week I've also been trying to follow (with about 95% success), the SCD diet from the Gottschall book. I'm having some difficulty resolving the contradictions in the different approaches, such as to use whey protein or not. For wasting in particular, and AIDS in general, Robert Giraldo and others strongly recommend whey protein as the only way to turn around wasting, but the colitis folk (both Dahlman and Gottschall) are equally adamant about no whey or any other dairy product in their diets.
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Old May 11th, 2009, 03:55 AM
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Expansive Mind Expansive Mind is offline
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Default Re: CMV Colitis - Alternative Treatments?

Jimbo,

I am curious about your CMV colitis diagnosis. Let me say that I know very little about this, so I have been poking around on the ‘net and looking for information. CB points out that CMV colitis is extremely rare in people without severe immune suppression, but it is also quite rare even in those with “aids” (3-5%). While it is possible that is the correct diagnosis, I wonder if it would help to review how that diagnosis was made.

You stated that you had chronic diarrhea for some unspecified time frame. According to the symptoms as listed at emedicine, the symptoms are not merely diarrhea, but rather:

When the colon becomes affected, ulcerative changes can be seen. As the body mounts an inflammatory response, watery diarrhea may begin to develop. As ulcers increase in depth, erosion into blood vessels can cause profuse bloody diarrhea. Over time, inflammatory polyps may develop, which, rarely, may obstruct the colon. Severe inflammation and vasculitis may lead to ischemia and transmural necrosis of the bowel, resulting in perforation and peritonitis.” [emphasis added]

And that is quite severe.

However, the CMV itself is ubiquitous. Emedicine states,
“Studies have shown that 50-80% of the world's population is seropositive for CMV”

The New York state health department website states,
“Anyone can become infected with CMV. Almost all people have been exposed to CMV by the time they reach adulthood.” [emphasis added]

Chronic diarrhea with sero-positive CMV may not be CMV colitis.

Did you receive a colonoscopy and did they discover ulcerations of your colon? Did they perform biopsies on samples from your colon? What was the procedure that led to the diagnosis?

Also are you being treated for CMV colitis? If so how?

EDIT: I see you are looking into treatments for your situation. I don't know what to say to you about different approaches other than I have had to come to a point where I choose based on what is simplest and doesn't add to my stress. Spending large sums just stresses me, so I don't do it. Changing my diet, well that I can handle. Good luck. And hang in there man, you will figure it out.

Last edited by Expansive Mind; May 11th, 2009 at 04:03 AM.
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Old May 11th, 2009, 05:20 AM
Jimbo Jimbo is offline
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Default Re: CMV Colitis - Alternative Treatments?

Expansive:

After my own internet searches of CMV Colitis, I never read the particular eMedicine article you referenced. From the description of ulcers and bloody diarrhea, etc, it sounds like my case is much milder. But then again, from some other on-line sources I've read, desriptions of the possible CMV symptoms are broader and include the wording "symptoms such as..." These symptoms include the very common colitis symptom of abdominal cramping, which I have intermittently.

One of the things both my GP and GI docs asked was if my stools were bloody - they haven't been at all. I had a colonoscopy done almost two weeks ago. The GI barely talked to me afterwards - he told me the only thing they found was that my upper colon was inflammed, with white polyps that they would biopsy and that he'd get back to me. He didn't say anything about ulcers. Polyps are mentioned in the eMed article, but the described UC colitis symptoms of bloody stools and ulcers I don't have.

Then this past monday, his assistant (not a doctor) called me at work telling me that the polyps could only be a sign of CMV Colitis and that their working diagnosis is "Probable CMV Infection", which would then be confirmed soon with the results of the lab tests. I asked her if it could be any other type of colitis, but she was insistent that it was CMV and that I should immediately see an infectious disease specialist. I'm not sure yet I want to do that, and haven't gone on any meds. I haven't heard anything from the GIs since.

Expansive, why do you say that colitis with confirmed CMV is not necessarily CMV colitis? Do you have a reference?

In the shocked state of mind I've been in since, I haven't allowed myself to get my hopes up that it isn't CMV (not that any colitis isn't serious).

Last edited by Jimbo; May 11th, 2009 at 05:25 AM. Reason: Forgot to answer all of Exansive's questions.
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Old May 11th, 2009, 07:55 PM
lightanddarkbalance lightanddarkbalance is offline
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Default Re: CMV Colitis - Alternative Treatments?

Jimbo,

Listen - let me try to simplify this because you are getting caught in the shopping mall marketplace where there are many choices but unless you realize that there are some catergories that are absolutely out of bounds and should not be listed in your choice options you will be in danger of having a very bad outcome.

In a nutshell, the most important thing for you is to stay away from any and all conventional medical treatments. The only exception would be if there was an emergency health condition.

Whatever you choose as a health modality it must not include something that can damage or kill you. It is confusing enough for a person to try to select a health approach when there are multiple choices. It is even harder if someone hasn't got prior experience which would enable more informed choice. But one thing stands out and must be respected as the single greatest priority and that is there is one path which will lead to certain health damage and a possible destroyed life -and that is conventional medicine.

Stay away from conventional medicine PERIOD - that includes at this point their diagnostic procedures, which are at best often highly speculative and frequently wrong. There are many treatments conventional medicine can offer you and none of them are curative, all are damaging and many are profoundly so. Things like CMV are no different even in the unlikely event that you have it.

The most important factor now is you - what you believe - why you believe it - the creditability of your sources - your clarity - your ability to set bounderies.

Stay away from conventional medicine !!
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Old May 19th, 2009, 10:35 AM
Jimbo Jimbo is offline
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Unhappy Re: CMV Colitis - Alternative Treatments?

Guys:

I thank you all for the thoughtful responses to this thread, as well as on the "Question about why so many HIV+ people die" thread on the Main Forum.

An update on my condition since last week: in addition to the CMV colitis and associated diarrea, and wasting (30 lbs since Feb when the diarrea started), I now seem to have many of the symptoms of PCP (unproductive cough, night sweats, extreme fatigue (worsining by the day). The only one I don't have that's listed is fever. (I haven't been to a doctor for diagnoses).

I started on Jonathan Campbell's agressive megadose supplement protocol about ten days ago. I understand alot of these recommendations are inspired by the work of Heinrich Kremer, whose book I haven't gotten yet. My one big gripe is that when taking the cereal-bowl sized pile of supplements around each meal, I have little room in my belly for anything else. I'm seriously rethinking a significant cutback on the amounts I'm taking - mainly the 6-12 gm each of Lysine, Proline, Arginine and Glutamine. Do I really need all those aminos?

I'm reading Paul Yeager's Immune book (ImmuneTheBook.com :: A Real, Whole Foods Diet is the Way towards a Healthy Immune System), which is excellent, and which focuses on diet rather than supplements. One of Paul's staples is raw liver smoothies, which I tried on saturday morning - followed by 2 days of non-stop watery diarrea.

Everyone including Yeager, Campbell and Kremer, seem to recommend IV infusions of either gluthathione and/or Vit c for people with CMV or PCP. To do that legally in my state I have to go through a GP or infections disease specialist, which I've been reluctant to do. But I may have to bite that bullet soon. Fortunately I'm (barely) able to continue working, but it's getting more difficult by the week.

There have been reports (protein diet guru Robert Atkins in one of his books) that indicate that NAC supplements don't work, due to inadequate absorption. At Yeager's recommendation, I've ordered Super OxiCell, which is a form of NAC that is applied via a cream to the skin for direct absorption into the bloodstream. For PCP, Yeager also recommends a nebulizer-inhalable glutathione treatment, but I haven't been able to find one yet.

Starting last night, the things I'm doing for the PCP (assuming that's what I have) include alkalinising mainly through baking soda and fresh-squeezed lemon juice; colloidal silver (MesoSilver) inhaled through a nebulizer, and ozone therapy using my portable ozone generator. My game plan is to see things through with this through this week - If I'm worse I'm going to the GP.
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Old May 21st, 2009, 04:36 AM
lightanddarkbalance lightanddarkbalance is offline
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Default Re: CMV Colitis - Alternative Treatments?

A few things stand out in my opinion from what your reporting -

One is that you are doing much to many things - huge amounts of supplements and a wide variety of them - this is an overload even to a strong system - Many people know conventional medicine is very bad and stay away from it as sign of intelligence -However the unskilled use of alternative treatments especially a shopping mall poly treatment approach is often not the right thing to do - poly therapies, and especially large amounts of many things all at once is an overload which the body can't handle.

Less is better when in a weakened and delicate state. What to choose from is the main question and right now it seems that you are self treating based on what seems to make sense to you. This is not ideal and unless there is no alternative practioneer who has some abilities ( not an easy criteria to fulfill ) you should not be self treating in these ways where you are taking such large and stressful amounts of supplements.

There also is a issue of misdiagnosis by placing medical terminology on things were it doesn't belong. PCP can only be diagnosed with a lung biopsy - there is no way around that - but nevertheless in the presense of a western blot positive test, thousands of HIV negative people who didn't have PCP were told they did, none had biopsies and all were damaged or worse by aggressive treatments - the same can be said for CMV colitis which is a very speculative and unnessary label to add onto to irritable bowel/colitis - more than a bad label it invites all types of medical treatment dangers especially within the construct of an HIV misdiagnosis.- it is bad enough to be sick and wonder how to get better - adding on misdiagnosis to illness, especially these highly charged false labels is not at all correct.

Hopefully you can juggle the situation to make choices that could end both the stress of excessive self treatment, protect yourself from what would happen if you went to an orthodox MD with these symptoms along with an HIV label and with some luck and *most importantly, could locate a reasonably capable alternative practioneer* ( who didn't malpractice you because of the HIV element - which should be kept out of the discussion least the case be ruined )

One thing that you can do to help yourself right away is to get high quality simple nutrition to counteract the progressive weakness of the long standing diahrea and weight loss. High quality protein in the form of a drink, (perhaps the easy to digest rice protein powder) a good electrolyte mineral to replace lost minerals, and a good carb like oranges for some energy- all would be quite helpful.

Keep posting on how things are going with you - Best wishes
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Old May 21st, 2009, 07:19 PM
lightanddarkbalance lightanddarkbalance is offline
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Default Re: CMV Colitis - Alternative Treatments?

Jimbo -

I regret not sharing the most important aspect of all - which is a well proven plan to get well.

Russell Mariani is a health practioneer who specializes in digestive illness - he works with people over the phone - I know of some of his clients and he has an extremely good record - he himself suffered from very serious ulcerative colitis - he has worked with thousands of clients with conditions ranging from colitis to IBS to chrons diseases

He is author of the book - Healing digestive illness.
The website is Healing Digestive Illness Russell Mariani Home

He can be contacted by phone to discuss a persons illness and give his ideas as how to recover. I'm told that these intial contact calls, which are free of charge, can last a good period of time and have been in depth discussions concerning the persons illness and the program.

The idea situation for treatment is one in which there is a proven tract record of success with a practioneer who has a lot of experience - These standards of competency are in meet with this program. I regret having failed to mention this in the very beginning of my posts.

Please take a careful look at what the web page has to say and then what you find out from you phone call discussion.

You are welcome to contact me anytime at my personal email address and or by phone to share more information.
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Old June 26th, 2009, 11:58 PM
cdm cdm is offline
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Default Re: CMV Colitis - Alternative Treatments?

I agree with several of the posts, that it is not wise to make a therapy based on a speculative and "probable" diagnosis. Believing in the capability of the diagnostic procedures to trace a CMV virus in the gut of a patient and attribute to it the cause of its disease, is equal to believe that HIV causes AIDS. To me is funny to believe such theories. Even if you find some peculiar bacterium in the stools it is never absolutely sure that this is definitively the cause of a discomfort. It is even more absurd to believe the same thing if you find an even smaller microorganism, like a virus. There is no common experience with the recognition of any virus in clinical samples. Only reference labs do it and this creates much suspicion.
Viral diseases last only for a while. It is crazy to say that a virus causes a chronic disease, like the polyps. There is no proof for it.
So my brother Jimbo you have a non- stopping diarrhea and you must do something about it. First thing is to calm yourself. Nobody could do it better than you. A diary where you collect your thoughts might help you find what is the cause of this situation. There is something in your behavior that created this reaction of your bowel. We can not say what it is. Finding this you may change something that provokes the reaction of the bowel and you may experience an alleviation of this state.
But later you will need also a means to cure your bowel from the sequellae of that particular behavior.
About this second phase, I would recommend you simple things to stop the diarrhea. My grandma gave me, in the village where I lived, a teaspoonful of raw coffee and the diarrhea stopped immediately. Also a soup with very slim macaroni, I do not know how you call it in USA, is beneficial.
Stopping the diarrhea is a prerequisite for the bowel to absorb food. This is an aggressive traditional way.
But we live in a scientific era and perhaps the traditional ways do not suit you.
All the aforementioned nutritive approaches are good.
My own recommendation is to use the nutritive approach of the alliance of Dr Rath. So if you find any representative in your area he could find you a solution rather easily. No need to be a physician.
About the amino-acids. Your organism needs them!!!

A lot of solutions exist, if you are calm to see them. This is a precious advice I give not only to you but to myself also.
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