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Old 10-04-2005, 05:09 PM   #1
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chronic epstein barr virus or mono or CFS

Dubois RE. Gamma globulin therapy for chronic mononucleosis syndrome. AIDS Research 1986; 2(1): 191-5.
Abstract: Antibodies against Epstein-Barr virus, associated with antibody dependent cytotoxic cell activity, were found to be present in diminished titer in 20 of 22 patients tested with chronic mononucleosis syndrome (CMS). Gamma globulin was shown to improve symptoms in 53% of the patients treated, compared with 32% of placebo injections. 89.5% of 57 patients treated with a gamma globulin treatment program remained in the treatment program because of relief of symptoms, and only four patients dropped out because there was no relief of symptoms or side effects. Four patients experienced complete relief of symptoms following a variable length treatment program. It would appear that intramuscular gamma globulin treatment is efficacious in the treatment of CMS and that the average interval between treatments is three weeks.

Lloyd A, Hickie I, Wakefield D, Boughton CR. A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome. American Journal of Medicine 1990; 89: 561-68.

Abstract: PURPOSE: The chronic fatigue syndrome (CFS) is characterized by profound fatigue, neuropsychiatric dysfunction, and frequent abnormalities in cell-mediated immunity. No effective therapy is known. PATIENTS AND METHODS: Forty-nine patients (40 with abnormal cell-mediated immunity) participated in a randomized, double-blind, placebo-controlled trial to determine the effectiveness of high-dose intravenously administered immunoglobulin G. The patients received three intravenous infusions of a placebo solution or immunoglobulin at a dose of 2 g/kg/month. Assessment of the severity of symptoms and associated disability, both before and after treatment, was completed at detailed interviews by a physician and psychiatrist, who were unaware of the treatment status. In addition, any change in physical symptoms and functional capacity was recorded using visual analogue scales, while changes in psychologic morbidity were assessed using patient-rated indices of depression. Cell-mediated immunity was evaluated by T-cell subset analysis, delayed-type hypersensitivity skin testing, and lymphocyte transformation with phytohemagglutinin. RESULTS: At the interview conducted by the physician 3 months after the final infusion, 10 of 23 (43%) immunoglobulin recipients and three of the 26 (12%) placebo recipients were assessed as having responded with a substantial reduction in their symptoms and recommencement of work, leisure, and social activities. The patients designated as having responded had improvement in physical, psychologic, and immunologic measures (p less than 0.01 for each). CONCLUSION: Immunomodulatory treatment with immunoglobulin is effective in a significant number of patients with CFS, a finding that supports the concept that an immunologic disturbance may be important in the pathogenesis of this disorder.

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Peterson PK, et al. A controlled trial of intravenous immunoglobulin G in chronic fatigue syndrome. American Journal of Medicine 1990; 89: 554-60.

Abstract: PURPOSE: Currently, there is no established therapy for chronic fatigue syndrome (CFS), a recently defined illness that has been associated with a variety of immunologic abnormalities. Based on the hypothesis that a chronic viral infection or an immunoregulatory defect is involved in the pathogenesis of CFS, the therapeutic benefit of intravenous immunoglobulin G (IV IgG) was evaluated in a group of patients with CFS. Additionally, serum immunoglobulin concentrations and peripheral blood lymphocyte subset numbers were measured at the outset of the study, and the effect of IV IgG therapy on IgG subclass levels was determined. PATIENTS AND METHODS: Thirty patients with CFS were enrolled in a double-blind, placebo-controlled trial of IV IgG. The treatment regimen consisted of IV IgG (1 g/kg) or intravenous placebo (1% albumin solution) administered every 30 days for 6 months. Participants completed a self-assessment form prior to each of the six treatments, which was used to measure severity of symptoms, functional status, and health perceptions. Patients were also asked to report adverse experiences defined as worsening of symptoms occurring within 48 hours of each treatment. RESULTS: Twenty-eight patients completed the trial. At baseline, all 28 patients complained of moderate to severe fatigue, and measures of social functioning and health perceptions showed marked impairment. Low levels of IgG1 were found in 12 (42.9%), and 18 (64.3%) had low levels of IgG3. At the end of the study, no significant therapeutic benefit could be detected in terms of symptom amelioration or improvement in functional status, despite restoration of IgG1 levels to a normal range. Major adverse experiences were observed in 20% of both the IV IgG and placebo groups. CONCLUSION: The results of this study indicate that IV IgG is unlikely to be of clinical benefit in CFS. In addition to the ongoing need for placebo-controlled trials of candidate therapies for CFS, an expanded research effort is needed to define the etiology and pathogenesis of this disorder.

Rowe KS. Double-blind randomized controlled trial to assess the efficacy of intravenous gammaglobulin for the management of chronic fatigue syndrome in adolescents. Journal of Psychiatric Research 1997; 31(1): 133-47.

Abstract: A double blind randomized controlled trial was conducted in 71 adolescents aged 11-18 years. Inclusion in the trial required fulfilment of the diagnostic criteria, (Fukuda et al., 1994). Three infusions of 1 gm/kg (max 1 litre of 6 gm/100 ml in 10% w/v maltose solution) were given one month apart. The dummy solution was a 10% w/v maltose solution with 1% albumin of equivalent volume for weight. Efficacy was assessed by difference in a mean functional score including school attendance, school work, social activity and physical activity, between baseline, three months and six months after the final infusion. There was a significant mean functional improvement at the six month follow-up of 70 adolescents with Chronic Fatigue Syndrome of average duration 18 months. There was also a significant improvement for both groups from the beginning of the trial to the six month post infusion follow-up. Adverse effects were common with both solutions but not predictive of response. Neither solution could be identified by recipients.

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Straus SE. Intravenous immunoglobulin treatment for the chronic fatigue syndrome [Editorial]. American Journal of Medicine 1989; 89: 551-3.

Vollmer-Conna U, Hickie I, Hadzi-Pavlovic D, Tymms K, Wakefield D, Dwyer J, Lloyd A. Intravenous immunoglobulin is ineffective in the treatment of patients with chronic fatigue syndrome. American Journal of Medicine 1997; 103(1): 38-43.

Abstract: PURPOSE: To determine whether the reported therapeutic benefit of intravenous immunoglobulin in patients with chronic fatigue syndrome (CFS) is dose dependent. PATIENTS AND METHODS: Ninety-nine adult patients, who fulfilled diagnostic criteria for CFS, participated in this double-blind, randomized, and placebo-controlled trial. Patients received intravenous infusions with either a placebo solution (1% albumin) or one of three doses of immunoglobulin (0.5, 1, or 2 g/kg) on a monthly basis for 3 months, followed by a treatment-free follow-up period of 3 months. Outcome was assessed by changes in a series of self-reported measures (quality-of-life visual analog scales, standardized diaries of daily activities, the profile of mood states questionnaire) and the Karnofsky performance scale. Cell-mediated immunity was evaluated by T-cell subset analysis and delayed-type hypersensitivity (DTH) skin testing. RESULTS: No dose of intravenous immunoglobulin was associated with a specific therapeutic benefit. Adverse reactions, typically constitutional symptoms, were reported by 70% to 80% of patients, with no relationship to immunoglobulin treatment. CONCLUSIONS: Intravenous immunoglobulin cannot be recommended as a therapy for the treatment of CFS. A better understanding of the pathophysiology of this disorder is needed before effective treatment can be developed.


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Last edited by Winnieie; 10-04-2005 at 05:10 PM.

 
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Old 10-18-2005, 11:21 PM   #2
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Re: chronic epstein barr virus or mono or CFS

winnieie,
I noticed the dates on this post, there is treatment available now for CFS, FMS and CFIDS, there have been great advancements in these areas over the last few years. There is light at the end of the tunnel.
uvm

 
Old 10-19-2005, 03:56 PM   #3
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Re: chronic epstein barr virus or mono or CFS

The only treatment i know about are by some now infamous doctors whom are very few and scattered thruout the country and dont accept new patients,a nd to find a doctor willing to do their protocol is like finding a needle in a hay stack, and most epoeple are too tired to travel such disances. What 'new' treatments are you talking about? cfs and fm are not the same, tho some can have them both. Most doctors know next to ntohting about cfs because they jsut dont get all the info in their medical journals, or find it too complicated to take on. Some even still think it is psychological, tho it is getting better. Anyway the three doctors i am thinking of are not new.

 
Old 10-20-2005, 04:00 AM   #4
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Re: chronic epstein barr virus or mono or CFS

Quote:
Originally Posted by Winnieie
The only treatment i know about are by some now infamous doctors whom are very few and scattered thruout the country and dont accept new patients,a nd to find a doctor willing to do their protocol is like finding a needle in a hay stack, and most epoeple are too tired to travel such disances. What 'new' treatments are you talking about? cfs and fm are not the same, tho some can have them both. Most doctors know next to ntohting about cfs because they jsut dont get all the info in their medical journals, or find it too complicated to take on. Some even still think it is psychological, tho it is getting better. Anyway the three doctors i am thinking of are not new.
I agree - What treatments????

 
Old 10-20-2005, 09:47 AM   #5
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Smile Re: chronic epstein barr virus or mono or CFS

I go to The Fibromyalgia and Fatigue Center, Dr Kent Holtorf went through medical school with CFS, and made it a quest to get himself better. Which led to him choosing to specialize in this field. He has developed a 6-Step Protocol for treatment and maintenance.

He is the most thorough doctor I have ever been to. I have been going there for almost a year. I have talked with many who are now in the maintenance step, and have experienced positive results myself.

One of his patients he treated succesfully is a Developer, who offered to partner with him to build centers across the United States in order to help those who are ill with FMS and CFS. I believe there are close to 10 centers opened with more soon to be. The doctors who have been chosen have experience in treating FMS & CFS, and they collabrate together bringing much to the table.

Personally, I cannot say enough about what Dr. Holtorf has done for me, I am getting my life back. The treatment treats the whole body with natural hormones, supplements, herbals and prescriptions. He treats every area of dysfunction within the body.

PCP's tend not address the CBC and CMC levels, usually saying their okay even when there is obvious (in bold print) out of range levels. At least that is what my pcp did. After my first appt, I had 34 vials of blood drawn at my 2nd appt while reviewing the lab work, he addressed every area that was in the bold print and if they were either at the top or bottom within the range.

He also has been trained in the field of Endocrinology, this is very importnat when it comes to CFS.
uvm

 
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Old 10-21-2005, 05:09 AM   #6
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Re: chronic epstein barr virus or mono or CFS

Quote:
Originally Posted by ukiahvalleymom
I go to The Fibromyalgia and Fatigue Center, Dr Kent Holtorf went through medical school with CFS, and made it a quest to get himself better. Which led to him choosing to specialize in this field. He has developed a 6-Step Protocol for treatment and maintenance.

He is the most thorough doctor I have ever been to. I have been going there for almost a year. I have talked with many who are now in the maintenance step, and have experienced positive results myself.

One of his patients he treated succesfully is a Developer, who offered to partner with him to build centers across the United States in order to help those who are ill with FMS and CFS. I believe there are close to 10 centers opened with more soon to be. The doctors who have been chosen have experience in treating FMS & CFS, and they collabrate together bringing much to the table.

Personally, I cannot say enough about what Dr. Holtorf has done for me, I am getting my life back. The treatment treats the whole body with natural hormones, supplements, herbals and prescriptions. He treats every area of dysfunction within the body.

PCP's tend not address the CBC and CMC levels, usually saying their okay even when there is obvious (in bold print) out of range levels. At least that is what my pcp did. After my first appt, I had 34 vials of blood drawn at my 2nd appt while reviewing the lab work, he addressed every area that was in the bold print and if they were either at the top or bottom within the range.

He also has been trained in the field of Endocrinology, this is very importnat when it comes to CFS.
uvm
Interesting information but I checked out every web site with his name and could not find where he is located.

 
Old 10-22-2005, 11:28 PM   #7
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Re: chronic epstein barr virus or mono or CFS

Hi,

The Fibromyalgia & Fatigue Centers first opened in Torrance, California, since then have opened many across the US of America.

I don't know if I can put their address and phone number on this board, I don't believe so.

However, it is really easy to find, uvm

 
Old 10-23-2005, 05:52 PM   #8
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Question Re: chronic epstein barr virus or mono or CFS

Quote:
Originally Posted by ukiahvalleymom
I go to The Fibromyalgia and Fatigue Center, Dr Kent Holtorf went through medical school with CFS, and made it a quest to get himself better. Which led to him choosing to specialize in this field. He has developed a 6-Step Protocol for treatment and maintenance.

He is the most thorough doctor I have ever been to. I have been going there for almost a year. I have talked with many who are now in the maintenance step, and have experienced positive results myself.

One of his patients he treated succesfully is a Developer, who offered to partner with him to build centers across the United States in order to help those who are ill with FMS and CFS. I believe there are close to 10 centers opened with more soon to be. The doctors who have been chosen have experience in treating FMS & CFS, and they collabrate together bringing much to the table.
Personally, I cannot say enough about what Dr. Holtorf has done for me, I am getting my life back. The treatment treats the whole body with natural hormones, supplements, herbals and prescriptions. He treats every area of dysfunction within the body.

PCP's tend not address the CBC and CMC levels, usually saying their okay even when there is obvious (in bold print) out of range levels. At least that is what my pcp did. After my first appt, I had 34 vials of blood drawn at my 2nd appt while reviewing the lab work, he addressed every area that was in the bold print and if they were either at the top or bottom within the range.

He also has been trained in the field of Endocrinology, this is very importnat when it comes to CFS.
uvm

Hello Ukiah Valley Mom,

I am very interested in getting my life back after FM, Myofacial Pain, CFS, GWI, and whatever else they want to call it. I got FM from abuse so I am not expecting it to go away, but if I can get some relief from some of this illness by riding my body of whatever bug I have picked up. I have served in and traveled in a lot of the European countries, ( I love Europe) and served in Southwest Asia and Iraq. I am about to retire and I want some medical care to restrenghten my body so I can better manage these conditions. I feel so sick and beat down right now and we all know how much of a struggle it is to feel so physically weak, achey, low blood pressure, low body temp, yet I feel feverish most of the time with flu like symptoms.

Right now, I am relying on a low dose of Percet for pain relief now, and I will not continue putting this toxic medicine in my body indefinately just for relief. No worries of addiction here, I am addicted to food, it is my personal pleasure I will not give up, but I do have to practice effective moderation to sucessfully endulge myself. I took elavil in a very stressful time and I gained about 15 extra pounds which makes it harder for our inefficent bodies to function.

Please Ukaih Valley Mom, tell me more about this Fatigue center and where this Great Doctor is....

Did they look for any virus or bug causing your immune system weakness and did you take antibiotics to help your immune system kill the infections?

I would kill for a deep tissue massage, but I am on a fairly tight budget, (still financing Attorneys in my custody battle...long dramatic nightmare for a Mom). Can't the Doctor perscribe this and trigger point minupulations to get the tension out of those hard rock tense muscle spasms? I think our Doctors see it as a "nice to have" and don't realize how agonizing those muscle spasms are. Will they perscribe massages at these centers and recommend them to continue to our Doctors when we come home?

Respectfully,

Carla

 
Old 10-23-2005, 06:45 PM   #9
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Re: chronic epstein barr virus or mono or CFS

Carla,
I am going to post my experience on the Fibromyalgia health issue board here, on the thread titled, The Fibromyalgia & Fatigue Centers...

Makes it a bit easier for me, sorry, I hope that you don't mind, uvm

 
Old 10-23-2005, 06:48 PM   #10
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Re: chronic epstein barr virus or mono or CFS

Not at all,

These Fibromyalgia and Fatigue Centers have caught my interest and since you are experienced with them I have been reading your all of your post for the past few hours or so to educate myself so I will search under your name to find the post. I am still trying to figure out how you guys manage to stay on top of so many post.....

Thanks,

Carla

 
Old 10-23-2005, 11:03 PM   #11
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Re: chronic epstein barr virus or mono or CFS

Quote:
Originally Posted by ceerose67
Not at all,

These Fibromyalgia and Fatigue Centers have caught my interest and since you are experienced with them I have been reading your all of your post for the past few hours or so to educate myself so I will search under your name to find the post. I am still trying to figure out how you guys manage to stay on top of so many post.....

Thanks,

Carla
Sorry, I had started the post on the Fibro thread, however it became time to cook dinner and my son had research for school to do, so I lost what I had written.

I'm going back to the thread to restart the message, you'll see it in the morning, good night uvm

p.s. I can only stay on top of posts when I feeling good. If I'm posting its bc the symptoms have started subsiding usually and there is no more fatigue, brain fog or cognitive thought problems. Then it doesn' take me an hour or longer to write one post! (hee-hee)

Last edited by ukiahvalleymom; 10-23-2005 at 11:08 PM. Reason: fixing a sentence

 
Old 10-24-2005, 04:15 AM   #12
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Re: chronic epstein barr virus or mono or CFS

Ukiah Valley Mom,

I have read with interest your posts about the treatment center where you feel you are healing your CFIDS. I have had this illness for 13 years and have probably tried every cure (sans toxic drugs) known to man. None had lasting effects as the "flares" inevitably returned if I tried to exercise, was stressed out, etc. I think many will bear this out, and it is certainly true in my case, that after about 10 years with this illness, my flares have definitely diminished, both in frequency and severity, but . . . the virus is still alive and well and I have to be careful with what I do. I'm afraid I'm a bit skeptical of miraculous healing practices, as I have tried so many alternative approaches, but I also remain open.

Mainly, I would like to know how long have you been under this protocol and are you symptom free or do you feel you are gradually reducing your symptoms? Have you tried exercising at a normal level? If so, were there repercussions? I have a call into the treatment center as I would like more information about their success rate, etc.

Thank you for sharing this information and I wish you well

 
Old 10-24-2005, 01:15 PM   #13
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Re: chronic epstein barr virus or mono or CFS

Quote:
Originally Posted by peregrine
Ukiah Valley Mom,

I have read with interest your posts about the treatment center where you feel you are healing your CFIDS. I have had this illness for 13 years and have probably tried every cure (sans toxic drugs) known to man. None had lasting effects as the "flares" inevitably returned if I tried to exercise, was stressed out, etc. I think many will bear this out, and it is certainly true in my case, that after about 10 years with this illness, my flares have definitely diminished, both in frequency and severity, but . . . the virus is still alive and well and I have to be careful with what I do. I'm afraid I'm a bit skeptical of miraculous healing practices, as I have tried so many alternative approaches, but I also remain open.

Mainly, I would like to know how long have you been under this protocol and are you symptom free or do you feel you are gradually reducing your symptoms? Have you tried exercising at a normal level? If so, were there repercussions? I have a call into the treatment center as I would like more information about their success rate, etc.

Thank you for sharing this information and I wish you well
Peregrine, please give me an hour or so, and then read the post under Fibromyalgia's The Fibromyalgia & Fatigue Center, there are 2 posts sharing describing the experience.

 
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