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Old 10-12-2010, 01:37 PM   #1
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EBV, CFIDS, CVID and Hypogammaglobulinemia

Does anyone have any of the following diagnoses either combined or seperately? If so what is the best doctor to see for further treatment?

Epstein Barr Virus/Chronic Fatigue Immune Dysfunction-DX 1992
Herpes -DX 1993
Several Bouts of Shingles-1998-2010
Irritable Bowel Syndrome-DX 2003
Psoriasis-DX 2005
Vestibular Migraines-DX 2009
Hypogammaglobulinemia-DX 2010

Chronic Fatigue is an Immune Deficiency, herpes/shingles related to the immune system, psorisis connected to the CNS, Vestibular Migraines related to CNS and or Neurology, now diagnosed with an Immune Disease Hypogammaglobulinemia.With an immune system that has been dysfunctioning with Epstein Barr Virus/CFIDS, for decades, and now hypogammaglobulinemia has been identified...what are the connections? What is the outlook for boosting the immune system as it has been fighting against itself for so long? Is that even possible? Can CVID be related to the above diagnoses, as a secondary cause or effect? Am I dying without being told that my immune system is failing slowly but surely? What kind of doctor treats all that I have? Someone please share your experiences for at this moment I feel lost and alone in the medical alphabet of don't ask, don't know, take it as it is and "you must eliminate stress" from your life! That is pretty darn hysterical don't ya think???

 
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Old 10-27-2010, 04:43 AM   #2
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

Virtually ALL of your conditions are probably related & due to immunological/auto-immunological issues. Assuming these diagnoses were NOT made by an Immunologist, you need to get yourself and to a GOOD one. And as you probably know, even Immunologists tend to specialize among themselves so don't bother with one that, say, specializes in diabetes ;-) Having come down to Florida two years ago to live I'm unable to recommend one up in NY, but I *can* say that the best tend to be either in NYC, or affiliated with a major university hospital.

I doubt VERY much that you're "dying," especially if you are not HIV+. Get yourself to a good Immunologist and you will then be able to get yourself on one or more of the latest meds that are known to help either boost one's immune system and/or inhibit undesirable auto-immune responses.

I'm sure you're feeling VERY badly; wish I could be of more help dear.

Last edited by SteveHC; 10-27-2010 at 04:47 AM.

 
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Old 10-27-2010, 07:37 AM   #3
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

Thank you so much Steve. I am aware of the immune connections and have been looking for a specialist, meanwhile taking immune boosting supplements under a health care provider. Unfortunately having an extensive health history with many various flare ups with no rhyme or reason is just maddening. So I have learned to know my body, know what effects it negatively, and live within my limitations without over extending myself physically or what not. Being sick and tired of being sick and tired has compelled me to get well and stay well, finding the right doctors is just a frustration that adds to the illnesses by way of stress. Funny that the first thing doctors have told me is to eliminate stress from my life! Give me a new body and maybe that is a real possibility! otherwise I do what I can to heal myself mind, body & spirit. When I find an immunologist or genetic counselor perhaps autoimmune dysfunction can be repaired.

 
Old 10-27-2010, 10:28 AM   #4
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

Although stress can aggravate just about ANY medical condition, any doctor whose primary "treatment prescription" for you is to tell you to "eliminate stress" is a doctor to be avoided, as I'm sure you already know.

I WILL tell you though - the IBS is probably the EASIEST of your issues to manage, as it's not generally considered to be a true auto-immune disorder but it can nevertheless make your life a living hell and thus worsen everything else. Very good treatment and management of it is achievable, and if you get THAT under control you'll probably find yourself feeling much better in general. If your IBS is still active and not under full control and you'd like some advice on how to deal with it effectively, just let me know - there's a regimen that almost guarantees full control if not virtual cure (that is, if it's genuinely IBS and not something like Crohn's).

 
Old 10-27-2010, 10:51 AM   #5
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

Steve, the IBS is somewhat under control. I have added acidopholus to my diet to help. Unfortunately, no doctor has taken further steps to rule out chrons or celiac. I have symptoms that wax and wane depending on what I eat...when I eat. I have had no hunger for 2 years....medications aided in that lovely reality, and Im sure colon polyp removal had some relevence. Elimination of all medications, and prior limitation of hunger, hence, food intake, led me to be better able to identify what does not agree with my digestive system once foods were re-introduced. Cheese brings on the pain in the stomach, lower intestinal tract, meat irritates my arthritis and my stomach blows up like I am a few months pregnant with both instances. I can not tolerate spicy food, and have decreased pasta, carbohydrates,intake and slowly am switching to gluten or wheat free products. Since I am not a fond sugar person, I am careful with that as well. My body tells me all I need to know...and as it responds to what food or drink causing IBS symptoms...I listen. Oh yeah I only drink coffee in the morning otherwise I won't eat, can't sleep and become very hypersentive.
Whatever advice you have to offer, I would be willing to hear what you know that I don't! The more insight, the more help, the better off we are. Thanks!!!

 
Old 10-28-2010, 06:48 AM   #6
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

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Originally Posted by yalwayssick View Post
Steve, the IBS is somewhat under control. I have added acidopholus to my diet to help. Unfortunately, no doctor has taken further steps to rule out chrons or celiac. I have symptoms that wax and wane depending on what I eat...when I eat. I have had no hunger for 2 years....medications aided in that lovely reality, and Im sure colon polyp removal had some relevence. Elimination of all medications, and prior limitation of hunger, hence, food intake, led me to be better able to identify what does not agree with my digestive system once foods were re-introduced. Cheese brings on the pain in the stomach, lower intestinal tract, meat irritates my arthritis and my stomach blows up like I am a few months pregnant with both instances. I can not tolerate spicy food, and have decreased pasta, carbohydrates,intake and slowly am switching to gluten or wheat free products. Since I am not a fond sugar person, I am careful with that as well. My body tells me all I need to know...and as it responds to what food or drink causing IBS symptoms...I listen. Oh yeah I only drink coffee in the morning otherwise I won't eat, can't sleep and become very hypersentive.
Whatever advice you have to offer, I would be willing to hear what you know that I don't! The more insight, the more help, the better off we are. Thanks!!!
Did you doc recommend IVIG? If you have hypogammabloulanemia isn't that low IgG? Sorry not up completely on my big words. I have cvid and get SCIG weekly. I never get sick. Although IgG will not help AUTO immune, only primary immune. Good luck.

 
Old 10-28-2010, 07:12 AM   #7
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

Hi Keli, no the doctor/s have not. In fact I was told to not worry about the results of hypogammaglobulenima which is indeed low IgG, and had to fight to get my testing done in the first place. Apparently I need to find new doctors who specialize in immune or autoimmune conditions...and the medical maze continues on whether I have primary or secondary.

 
Old 10-28-2010, 07:37 AM   #8
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

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Originally Posted by yalwayssick View Post
Hi Keli, no the doctor/s have not. In fact I was told to not worry about the results of hypogammaglobulenima which is indeed low IgG, and had to fight to get my testing done in the first place. Apparently I need to find new doctors who specialize in immune or autoimmune conditions...and the medical maze continues on whether I have primary or secondary.
Yes I would find a new doc...true immunologists are kind of hard to find. Usually allergy treats immunology as well. If you have low IgG, probably need to do the pneumo vacc test and see if you make antibodies, that is usually the final step in CVID testing.

 
Old 10-28-2010, 10:00 AM   #9
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Re: EBV, CFIDS, CVID and Hypogammaglobulinemia

Thank you for your advice Kelli, since having such an extensive medical history and speaking up or questioning, I have been concerned about the possibility of CVID, yet didn't even ask my physician about it...knowing that it is time for specialist and or specific care for the conditions that I suffer from. will keep on it

 
Old 11-24-2010, 07:22 AM   #10
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EBV, Mono, Cfids, 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?

Last edited by yalwayssick; 11-24-2010 at 07:25 AM. Reason: mispelling

 
Old 11-26-2010, 03:07 PM   #11
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Re: EBV, Mono, Cfids, and more

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Originally Posted by yalwayssick View Post
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?
Is this like a school quiz? Just Curious..Anyway I'll take a stab at it.

1. No. EBV is a virus that can cause Mononucleosis in some people, usually adolescents. Most people have been infected with EBV, but few will get Mononucleosis from it.
2.No. EBV is a virus..A fatigue disorder cannot cause a virus.
3. No relation whatsoever.
4. CNS involvement from Mononucleosis is rare.
5. Possible infection from EBV...
6. No..I'm pretty sure the cause of CVID is unknown..They think possibly genetics.

Now that I answered your questions, please answer mine.
1. Why are you asking
2. You are aware the answers to these questions are easily found by a quick google search right?

 
Old 11-26-2010, 03:46 PM   #12
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Re: EBV, Mono, Cfids, and more

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Is this like a school quiz? Just Curious..Anyway I'll take a stab at it.

1. No. EBV is a virus that can cause Mononucleosis in some people, usually adolescents. Most people have been infected with EBV, but few will get Mononucleosis from it.
2.No. EBV is a virus..A fatigue disorder cannot cause a virus.
3. No relation whatsoever.
4. CNS involvement from Mononucleosis is rare.
5. Possible infection from EBV...
6. No..I'm pretty sure the cause of CVID is unknown..They think possibly genetics.

Now that I answered your questions, please answer mine.
1. Why are you asking
2. You are aware the answers to these questions are easily found by a quick google search right?
Thanks for your insight, its appreciated! To answer your questions:
1. Because I can and it is in my nature.
2. Yes I am aware of that
~ angel:

 
Old 11-26-2010, 08:50 PM   #13
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Re: EBV, Mono, Cfids, and more

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Originally Posted by yalwayssick View Post
Thanks for your insight, its appreciated! To answer your questions:
1. Because I can and it is in my nature.
2. Yes I am aware of that
~ angel:
Nice, thanks for the quiz!

 
Old 11-27-2010, 08:02 AM   #14
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Re: EBV, Mono, Cfids, and more

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Nice, thanks for the quiz!
@Sporque...In consideration of the questions, insightful answers, and the unknown origins of CVID~

Would you agree then that "genetic" testing be sought after for possible CVID? In both preventative health measures and or for furthering research of the "connections" that may be somehow inter-related?

 
Old 11-27-2010, 08:28 AM   #15
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Re: EBV, Mono, Cfids, and more

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Originally Posted by yalwayssick View Post
@Sporque...In consideration of the questions, insightful answers, and the unknown origins of CVID~

Would you agree then that "genetic" testing be sought after for possible CVID? In both preventative health measures and or for furthering research of the "connections" that may be somehow inter-related?
Yes, if in fact there is a genetic component to the disease.

 
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