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Old 11-27-2010, 07:38 AM   #16
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Re: EBV, Mono, Cfids, and more

Quote:
Originally Posted by sporque View Post
Yes, if in fact there is a genetic component to the disease.
Family predisposition and factors are indicative of this, however, since I am a layperson, how can I assert my concerns within and to medical care professionals without seeming to be presumptuous?
Thus far, my questions have not been received very well, and the journey of ruling out has been very long.

Last edited by moderator2; 11-27-2010 at 06:14 PM.

 
Old 11-27-2010, 07:52 AM   #17
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Re: EBV, Mono, Cfids, and more

Do you mind if I ask what your symptoms are at this very moment?

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Old 11-27-2010, 08:15 AM   #18
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Re: EBV, Mono, Cfids, and more

Quote:
Originally Posted by sporque View Post
It says "administrator has turned off Private Messaging"..Hmm

Do you mind if I ask what your symptoms are at this very moment?
IBS-when eat certain foods stomach blows up as if 3 months pregnant.
Lack of appetite for approx 2 years.

Psoriasis, athritis, low energy, periodic cognitive malfunction, vertigo with aura, nautiousness causing need to lay down/sleep, interference with speech (stuttering or wrong words come out), periodic lymph gland swelling, difficulty swallowing, taste of blood in back of throat. periodic neuro body tics during panic attacks, sensitivity to light, sound and weather. Recent bout of shingles, gait problems, and overall tiredness. The list goes on.

 
Old 11-27-2010, 08:20 AM   #19
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Re: EBV, Mono, Cfids, and more

Quote:
Originally Posted by yalwayssick View Post
IBS-when eat certain foods stomach blows up as if 3 months pregnant.
Lack of appetite for approx 2 years.

Psoriasis, athritis, low energy, periodic cognitive malfunction, vertigo with aura, nautiousness causing need to lay down/sleep, interference with speech (stuttering or wrong words come out), periodic lymph gland swelling, difficulty swallowing, taste of blood in back of throat. periodic neuro body tics during panic attacks, sensitivity to light, sound and weather. Recent bout of shingles, gait problems, and overall tiredness. The list goes on.
Have you been tested for all the major autoimmune diseases? Lupus, MS etc..

 
Old 11-27-2010, 08:37 AM   #20
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Re: EBV, Mono, Cfids, and more

Quote:
Originally Posted by sporque View Post
Have you been tested for all the major autoimmune diseases? Lupus, MS etc..
Lyme, negative.
Lupus not tested.
MS not ruled out, yet the brain lesions that exist are not in the locations that are usually represented in MS patients.
Therefore, I would need a second opinion or retesting to see if any changes have ocurred.

I was told to not worry about the hypogammaglobulinemia
I was told that body tics were stress related.
I was told that since I know I have EBV there is no reason to test my Tcells

I am disheartened by these answers that seem to minimize my health concerns, for the mind, body, immune system and or related diseases are pertinent to my quality of life. Underlying causes and or non identified diseases do not help one maintain ones health, but instead could hinder it.
Being positive and proactive in attempting to get well and stay well, depends on obtaining more tests, just not sure what sort of physician to go to next.

 
Old 11-27-2010, 09:00 AM   #21
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Re: EBV, Mono, Cfids, and more

Quote:
Originally Posted by sporque View Post
Have you been tested for all the major autoimmune diseases? Lupus, MS etc..
I asked for a Lumbar Puncture but was denied because it is too invasive.

according to research, journals and reliable sources such as PubMed, NCBI, and Natl institute of Health library...the most updated information is extremely important, Yet Ive even been told not to rely on these sources, which indicates to me that if you dont ask, you dont know, and thereby take for granted or with a grain of salt that what your body is telling you is not considered enough for delving into.

 
Old 11-30-2010, 02:55 PM   #22
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Re: EBV, Mono, Cfids, and more

I guess I'm confused...It seems as though you've done A LOT of research..
So, when you posted your quiz, was that just a quiz, or did you seriously not know the answers to those questions? Based on what you've said since it would seem you've researched those subjects extensively..
Is it that you don't agree with the conclusions science has on those topics, or are you looking for some alternative explanation?
I guess I'm more confused now about your situation then I was before.

Example
"Can fatigue cause Ebv?"

Really?

 
Old 11-30-2010, 03:38 PM   #23
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Re: EBV, Mono, Cfids, and more

Quote:
Originally Posted by sporque View Post
I guess I'm confused...It seems as though you've done A LOT of research..
So, when you posted your quiz, was that just a quiz, or did you seriously not know the answers to those questions? Based on what you've said since it would seem you've researched those subjects extensively..
Is it that you don't agree with the conclusions science has on those topics, or are you looking for some alternative explanation?
I guess I'm more confused now about your situation then I was before.

Example
"Can fatigue cause Ebv?"

Really?
My questions were not meant to be quizzical, although my experiences with my own health related to those questions most certainly have been I seriously do not know the answers, but I do know the systems of how the body works...my body that is. I do indeed agree with science and many conclusions of research study, however, based on my history combined with that research simply does not negate the multitude of concern surrounding my inquiry.

If I ask a question and it is not answered I seek the answer through further questions or analytical methods of finding out the who, what, where, when, why and how of things...that would mean more questions, more data, more research, more comparison and gaining insights or comparisons from others either in the field, on message boards, forums, and reliable health resources of information. Just because I research, doesn't mean I have the answers per se, but it does mean I am taking an active measure in educating myself in order to better master my own healthcare in the preventative, and or pursuit of obtaining the maintainable goal of healing.

Therefore I am not looking for an alternative explanation, but I am looking for answers to pertinent questions that have yet to be answered. Your confused...imagine how I feel!

The first two questions are sort of like a scientifically posed question or a thinking outside of the box while connecting the dots along the side of that box.

Example Q1- So does Mono activate Epstein Barr Virus (EBV)? Or does EBV leave one prone to get Mono?
Q2-Does Chronic fatigue Immune Deficiency syndrome (CFIDS) cause EBV?
Both of these questions are just that...questions of that which may be connected or in other words, what came first the chicken or the egg?

That is what fuels science and research...the questions of how things work together or not, and gathering data to either prove or disprove what is collected, thus being provided the ability to gain accurate results and or conclusions.

Not knowing is (to me) the exact opposite of the old adage "ignorance is bliss"...for it truly is not that way. To learn, is to question, and to question is to learn, to not do so would seem to be a non active participant in my own life. REALLY

 
Old 11-30-2010, 09:22 PM   #24
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EBV, CFIDS, Mono and more

Q1- So does Mono activate Epstein Barr Virus (EBV)? Or does EBV leave one prone to get Mono?

Q2-Does Chronic fatigue Immune Deficiency syndrome (CFIDS) cause EBV?

Q3- What is the relation of Chronic Fatigue Immune Dysfunction, Epstein Barr Virus, Mononucleosis (infectious or non) and Hypogammaglobulinemia?

Q-4- How do any of or all of these combined effect the Central nervous system?

Q-5 What is the indication when EBV is positive, Low IGG Serum present, Low RBC, Low B-cell production evident and Low Natural Killer Cells present?

Q6- with all of the above immune system or compromised immune related diseases, is Common Variable Immune Deficiency (CVID) next in line?

If so, what are the specific tests required to obtain treatment for those who get constant infections and illnesses?

What is the effects on the Central Nervous System with all of the above present?

what is the prognosis or classical decline of complement systems?

 
Old 12-02-2010, 07:43 AM   #25
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Re: EBV, CFIDS, Mono and more

Q1 So does Mono activate Epstein Barr Virus (EBV)? Or does EBV leave one prone to get Mono?

Mononucleosis is a syndrome characterized by fatigue, enlarged lymph glands in the body (especially the spleen) and can sometimes also result in hepatitis. It is often caused by EBV, but can be caused by other things like CMV, Toxoplasmosis and even HIV.


Q2-Does Chronic fatigue Immune Deficiency syndrome (CFIDS) cause EBV?

No....I know this may not be what you want to hear, but CFIDS as it is is a dubious diagnosis. The diagnostic criteria are not well characterized and we're not really sure what causes it. To be SURE, this is NOT (I repeat NOT) in patients' heads, but the thing is, chronic fatigue can be seen post infection with many other things other than EBV.

Q3- What is the relation of Chronic Fatigue Immune Dysfunction, Epstein Barr Virus, Mononucleosis (infectious or non) and Hypogammaglobulinemia?
EBV can cause mono (among other things that I mentioned) and chronic fatigue can be seen after mono, but it can be seen after infection with many other things as well (e.g. Giardia). Hypogammaglobulinemia is a specific finding suggesting B-cell dysfunction in the bone marrow....you can see this in any viral infection, but you can see it in certain immune deficiencies. It's not directly related to mono.


Q-4- How do any of or all of these combined effect the Central nervous system?
Other than non-specific feelings of tiredness and mental fogginess etc. etc., not much. EBV infection can rarely be associated with central nervous system lymphoma, but again, this is rare.


Q-5 What is the indication when EBV is positive, Low IGG Serum present, Low RBC, Low B-cell production evident and Low Natural Killer Cells present?
There may be some anchoring bias here. It seems like there may be evidence of bone marrow suppression is going on here, but this may have nothing at all to do with EBV. If it hasn't been investigated by a hematologist it should be....if it persists, a bone marrow biopsy should be done. Certain drugs and malignancies can do this as well. These need to be ruled out.


Q6- with all of the above immune system or compromised immune related diseases, is Common Variable Immune Deficiency (CVID) next in line?
CVID is possible, yes, but the diagnosis needs to be confirmed with objective testing. Patients with CVID don't just have low immunoglobulin production in all lines...they have VERY low to almost no production.

If so, what are the specific tests required to obtain treatment for those who get constant infections and illnesses?
***It depends. This is a loaded question because things need to be ruled out first. It also depends what you mean by "infection" Many people get constant "flu like' illnesses and that doesn't constitute an immune deficiency. But if you told me you were getting repeated infections with encapsulated bacteria (e.g. pneumococcus or meningococcus) or were having chronic sinus and/or pulmonary bacterial infections, THEN it would suggest an underlying, serious immune deficiency. In this case, an immunologist's help should be sought.


What is the effects on the Central Nervous System with all of the above present?
****Again, it depends on WHY those things are present. This question can't be answered very simply.


what is the prognosis or classical decline of complement systems?
*****Complement deficiency diseases are very rare. I'm not sure to the actual prognosis because I haven't seen many of these. The ones I've seen are patients who have terminal complement deficiency are tend to get chronic neisserial infections. This is best answered by an immunologist.

 
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Old 12-02-2010, 09:17 AM   #26
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Re: EBV, CFIDS, Mono and more

Quote:
Originally Posted by harka View Post
Q1 So does Mono activate Epstein Barr Virus (EBV)? Or does EBV leave one prone to get Mono?

Mononucleosis is a syndrome characterized by fatigue, enlarged lymph glands in the body (especially the spleen) and can sometimes also result in hepatitis. It is often caused by EBV, but can be caused by other things like CMV, Toxoplasmosis and even HIV.


Q2-Does Chronic fatigue Immune Deficiency syndrome (CFIDS) cause EBV?

No....I know this may not be what you want to hear, but CFIDS as it is is a dubious diagnosis. The diagnostic criteria are not well characterized and we're not really sure what causes it. To be SURE, this is NOT (I repeat NOT) in patients' heads, but the thing is, chronic fatigue can be seen post infection with many other things other than EBV.

Q3- What is the relation of Chronic Fatigue Immune Dysfunction, Epstein Barr Virus, Mononucleosis (infectious or non) and Hypogammaglobulinemia?
EBV can cause mono (among other things that I mentioned) and chronic fatigue can be seen after mono, but it can be seen after infection with many other things as well (e.g. Giardia). Hypogammaglobulinemia is a specific finding suggesting B-cell dysfunction in the bone marrow....you can see this in any viral infection, but you can see it in certain immune deficiencies. It's not directly related to mono.


Q-4- How do any of or all of these combined effect the Central nervous system?
Other than non-specific feelings of tiredness and mental fogginess etc. etc., not much. EBV infection can rarely be associated with central nervous system lymphoma, but again, this is rare.


Q-5 What is the indication when EBV is positive, Low IGG Serum present, Low RBC, Low B-cell production evident and Low Natural Killer Cells present?
There may be some anchoring bias here. It seems like there may be evidence of bone marrow suppression is going on here, but this may have nothing at all to do with EBV. If it hasn't been investigated by a hematologist it should be....if it persists, a bone marrow biopsy should be done. Certain drugs and malignancies can do this as well. These need to be ruled out.


Q6- with all of the above immune system or compromised immune related diseases, is Common Variable Immune Deficiency (CVID) next in line?
CVID is possible, yes, but the diagnosis needs to be confirmed with objective testing. Patients with CVID don't just have low immunoglobulin production in all lines...they have VERY low to almost no production.

If so, what are the specific tests required to obtain treatment for those who get constant infections and illnesses?
***It depends. This is a loaded question because things need to be ruled out first. It also depends what you mean by "infection" Many people get constant "flu like' illnesses and that doesn't constitute an immune deficiency. But if you told me you were getting repeated infections with encapsulated bacteria (e.g. pneumococcus or meningococcus) or were having chronic sinus and/or pulmonary bacterial infections, THEN it would suggest an underlying, serious immune deficiency. In this case, an immunologist's help should be sought.


What is the effects on the Central Nervous System with all of the above present?
****Again, it depends on WHY those things are present. This question can't be answered very simply.


what is the prognosis or classical decline of complement systems?
*****Complement deficiency diseases are very rare. I'm not sure to the actual prognosis because I haven't seen many of these. The ones I've seen are patients who have terminal complement deficiency are tend to get chronic neisserial infections. This is best answered by an immunologist.

 
Old 12-02-2010, 10:02 AM   #27
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Re: EBV, CFIDS, Mono and more

Quote:
Originally Posted by harka View Post
Q1 So does Mono activate Epstein Barr Virus (EBV)? Or does EBV leave one prone to get Mono?

Mononucleosis is a syndrome characterized by fatigue, enlarged lymph glands in the body (especially the spleen) and can sometimes also result in hepatitis. It is often caused by EBV, but can be caused by other things like CMV, Toxoplasmosis and even HIV.


Q2-Does Chronic fatigue Immune Deficiency syndrome (CFIDS) cause EBV?

No....I know this may not be what you want to hear, but CFIDS as it is is a dubious diagnosis. The diagnostic criteria are not well characterized and we're not really sure what causes it. To be SURE, this is NOT (I repeat NOT) in patients' heads, but the thing is, chronic fatigue can be seen post infection with many other things other than EBV.

Q3- What is the relation of Chronic Fatigue Immune Dysfunction, Epstein Barr Virus, Mononucleosis (infectious or non) and Hypogammaglobulinemia?
EBV can cause mono (among other things that I mentioned) and chronic fatigue can be seen after mono, but it can be seen after infection with many other things as well (e.g. Giardia). Hypogammaglobulinemia is a specific finding suggesting B-cell dysfunction in the bone marrow....you can see this in any viral infection, but you can see it in certain immune deficiencies. It's not directly related to mono.


Q-4- How do any of or all of these combined effect the Central nervous system?
Other than non-specific feelings of tiredness and mental fogginess etc. etc., not much. EBV infection can rarely be associated with central nervous system lymphoma, but again, this is rare.


Q-5 What is the indication when EBV is positive, Low IGG Serum present, Low RBC, Low B-cell production evident and Low Natural Killer Cells present?
There may be some anchoring bias here. It seems like there may be evidence of bone marrow suppression is going on here, but this may have nothing at all to do with EBV. If it hasn't been investigated by a hematologist it should be....if it persists, a bone marrow biopsy should be done. Certain drugs and malignancies can do this as well. These need to be ruled out.


Q6- with all of the above immune system or compromised immune related diseases, is Common Variable Immune Deficiency (CVID) next in line?
CVID is possible, yes, but the diagnosis needs to be confirmed with objective testing. Patients with CVID don't just have low immunoglobulin production in all lines...they have VERY low to almost no production.

If so, what are the specific tests required to obtain treatment for those who get constant infections and illnesses?
***It depends. This is a loaded question because things need to be ruled out first. It also depends what you mean by "infection" Many people get constant "flu like' illnesses and that doesn't constitute an immune deficiency. But if you told me you were getting repeated infections with encapsulated bacteria (e.g. pneumococcus or meningococcus) or were having chronic sinus and/or pulmonary bacterial infections, THEN it would suggest an underlying, serious immune deficiency. In this case, an immunologist's help should be sought.


What is the effects on the Central Nervous System with all of the above present?
****Again, it depends on WHY those things are present. This question can't be answered very simply.


what is the prognosis or classical decline of complement systems?
*****Complement deficiency diseases are very rare. I'm not sure to the actual prognosis because I haven't seen many of these. The ones I've seen are patients who have terminal complement deficiency are tend to get chronic neisserial infections. This is best answered by an immunologist.
Dear Harka, Thank you so much for your response! Yes, indeed the dubiousness of the disorder/s in itself, and unknown causes do complicate things. Of course getting answers to these questions (even if they are in nature not what is wanted to hear), is more important than not having any answers at all. Unfortunately, the elusiveness of CFIDS is harrowing for both medical practitioners, and patients, and even more so for those who research these conditions. Fortunately, progress has and continues to be made in all arenas, especially for rare diseases etc.

As an individual whose symptoms and or conditions have been a lifelong continuum of measure, testing or the ruling out of things simply put, has been necessary. At this point in time a clinical immunologist and or infectious disease specialist is being sought out, since the progression of health concerns for myself and or family members is a priority. hematologist was seen but for my child who is the one question#5 refers to. since genetic factors or inherited conditions of unknown duplicity may exist, it is all relevant.

Once again your response is very much appreciated , and dont be surprised if I elaborate on asking more....of the why's considering the who, what, where, when, and how's of the here and now!

 
Old 08-16-2011, 01:24 PM   #28
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

hello- I was just diagnosed with Hypogammaglobulinemia in 2011. None whatsoever of any Immunoglobulins. This appears to have been a slow decline going back to the 80's. This is based on some old blood results that had my globulins higher in the 90's (1.7) and going down hill since. Currently 1.2 g/dl. In my head I have narrowed it down to two possibilities, that it was hereditary or from EBV that I had in 1982. My EBV lasted quite a long time when I relapsed. I had gotten rid of it quickly at first but it came back a couple months later and last well over a year. I have had the following:
EBV 1982-1984
Shingles 1985
years of sinus infections 1989- present
Pneumonia 2003
multiple years of odd aches/pains
odd infections/ yeast etc
Also had 12 silver filling in my mouth that I have removed over last couple yrs. I got them out as a precaution- don't really think that its likely as the other possibilities that mercury could have caused this but didnt want them in my mouth either.
I was not a sickly child, and when I had the EBV, my titer came back very high so i had an immune system then. No one ever believes iam sick since I still try to workout/run and is in great shape for my age/condition . It was such a relief to finally find a Dr who ran the right tests. Currently, I was tested for various titers normally found and none exist in me. I just started on IGIV but Iam going to bring up to my Dr (great immunologist) the question about EBV being the cause and whether it might be reversible. If its hereditary I think there would not be any hope of recovery as far as the body producing them again. If EBV, who knows. I found it interesting that the first item on your list is EBV as well. I'll let you know what he says in Oct 2011. I'll have had a couple months of IGIV my then. It took at least a couple decades of decline so its going to be a long road back if it can be restored. Ask an Immunologist lots of questions and give them your history. good luck to you

 
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