How do I know if EBV has reactivated or is the same infection?
In December after feeling horrible since Oct '07 my doc finally agreed to run an EBV test on me and here were my results:
EBV Early Antigen Ab, IgG: 140 High (range 0-99)
EBV Ab VCA, IgG: 2880 High (range 0-99)
EBV Nuclear Antigen Ab, IgG: 402 High (range 0-99)
I'm a little confused by the results but my doc thinks I either am still getting over the initial infection or had a relapse and am getting over that now. The thing is I was diagnosed with mono back in Sept 2001. Is it possible to still have that high of antibodies 7 1/2 years later? I have hypothyroidism that came a few months after being diagnosed with mono back in 2001. I always felt there was a connection but didn't know how. It unfortunately took between 2001 and 2004 to finally get diagnosed with hypothyroidism but once I got on meds I felt fantastic (lost all 45 lbs I had put on in a mere 3 months, no more IBS, no more GERD, no more depression, periods stablized, skin problems gone etc). I felt wonderful until the end of 2007. At that time I had been under tremendous stress and all of a sudden I felt the same as I had back in Sept 2001 when I got mono. I didn't realize it could relapse but kept telling my doctors that I felt the same as I had before. All 5 of them that I went to between then and now ignored my comment until December when I finally got my doc to test it. The thing is that all my hypothyroidism symptoms reappeared including gaining 50 lbs in just 3 months! I went on disability but they labeled it "self reported symptoms" as the cause because they quote the CDC as saying that "even when antibody tests such as EBV EA suggest reactivation may be present this test result does not necessarily indicate a patient's medical condition is caused by an EBV infection because healthy people with no symptoms have antibodies to EBV EA many years after their initial EBV infection". They told me that my assertion of a link between my thyroid status and EBV infection is outside of the realm of legitimate pathophysiology and basically told me that I am depressed and my depression is making me seek medical explanations for physical symptoms that I am producing due to my emotional experiences. I am so mad I could scream!! Everyone who knows me knows that I am not a depressed person but that the depression came after I became ill with all my symptoms. Of course the docs don't want to hear that and ignore anything I say. I know I don't have CFS because I don't have the dibilitating pain and fatigue... just tired but not to that extent. My main problems are associated with the thyroid but my body seems to be rejecting all thryoid meds since Oct 2007. I really feel that the EBV being active is what is making it difficult for my body to use the thyroid meds and my one doctor agrees (actually he suggested it). I'm just confused at this point and wondering if anyone else has had issues using thyroid meds while their EBV was active? I'm convinced that is the problem but since nobody tested me for EBV antibodies between 2001 and 2008 (especially during the years I was healthy 2004-2007) I don't know if they were active at that time either and if this isn't the cause at all. I just don't know enough about it but from some of the things I've seen I didn't know you could have that high of antibodies while not having any symptoms or that long after an initial illness. Sorry to go on and on but right now I'm really upset and just seeking any answers... this has taken too much of my life away.
I just wanted to comment about your doctors saying you are just depressed. I went through (and still am to an extent) some of the same thing - I think I wrote about it in a journal on my profile. Anyway, my primary doctor prescribed prozac but in a way that I didn't know that was what it was (a different generic name). I was so upset when I found out. I told him that I wasn't depressed unless you considered the fact the doctors couldn't find out what was wrong with me. Turned out, I had 2 major operations and just found out I have active EBV and CFS. I didn't go back to that doctor (who I had been seeing for 10 years) but wrote him a letter telling him what ended up being wrong with me and unprofessional it was for him to write me off as some depressed woman. I don't think doctors listen to women. We know our bodies better than anyone could and we know when something is wrong. Sorry this is so long. I just wanted you to know that I have been through something similar and you fight those doctors!!!
Hypothyroidism is common in many CFS & fibro patients. The bizarre thing is that often the standard thyroid tests (TSH & T3) won't pick this abnormality up !
You say you don't have symptoms of CFS... which is good. I thought I would share with you what a CFS physician is saying about treating CFS patients, who have thyroid problems. Perhaps you should disucss this with your Endocrinologist ?
T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."
Doctors don't listen to guys also. Maybe women more so, but I have been told about being depressed by at least 2-3 of the doctors I have seen. In fact, I think that was one of my early prescriptions when I started having a bunch of symptoms last year. Never took it, whatever it was. I have also been told to go see a pyschologist.
Doctors should have a motto of "crank 'em in and crank 'em out" based on some of their meager evaluations.
I told my endocrinologist about the Reverse T3 and she told me that she did not know what the test was??????? She did test for TSI and the #s were abnormal for Grave's Disease. I too suffer with depression and most doctors I have seen write off EBV just like they do CFIDS/Fibro. I am going to a specialist in the next couple of weeks that you referred me to. I can't wait to see him and I hope to get some good results regarding the visit. I hate doctors who blame everything on depression and anxiety!
I'm sending you a link on the test, so check your inbox when you get a chance. I am happy that you are going to get tested for lyme disease.
And yes, these physicians are something... aren't they ? I was one of the lucky ones... they never mentioned depression to me. I think it was because my allergies were so severe, that I actually looked sick. But they made assumptions that my symptoms were due to allergies... despite the fact that I repeatedly told them that I had health issues after having a severe case of mono. I wish they would listen to their patients for once !
I can relate to what you are going through. I have Hashimotot's Thyroiditis and am taking 75mcg Synthroid. It does help me with my thyroid problems, so that in not the issue for me at this time. However, I do have extremely high EBV titers like you have. I'll give you mine: EBV VCA-3,536 EBV Early Antigen-163 EBV Nuclear Antigen-572. I got my original infection about 7 or 8 years ago. Since then I have gotten it again about 4 or 5 times. I will have months when I feel awful, and then I will have months when I feel pretty good. It's all so unpredictable. I'm sorry I cannot help you with your thyroid meds not working currently. I don't know what that could be about. I feel your pain when it comes to doctors being unable to help.
I can't tell you enough how this helps me feel better about the whole thing! I was about ready to scream when I got the letter from the disability. I've been through the whole run around before when I first got mono back in 2001 and then proceeded to develop thyroid issues so I know I'm not crazy and this isn't caused by depression (after all I got better when the EBV settled down and I got on thyroid meds) but it's just frustrating when you keep getting these people to say these things to you. I did want to say that I am very educated on thyroid disease at this point and am on Armour for it. I did perfect on it for 3 years when my EBV was under control so I think it's more the EBV and not thyroid causing the problems it's just that the symptoms are thyroid since the EBV makes my body not use the thyroid drugs. I tried synthetic t4 and was getting fibro or CFS symptoms (pain with anyone touching me, horrible fatigue to the point I couldn't lift my arms, depression 10x's worse, gained more weight etc) so I got off that stuff and will never go back. I also added synthetic t3 this last year and have had breathing problems from it and ended up having skipped heart beats and my resting heart rate doubled. It is taking me a while but I am backing off of the t3 and trying to get back to my regular dose of Armour. The last year not knowing that my EBV had reactivated we thought it was my thyroid and we drastically overstimulated my body while trying to get a dose that would work. In the end I think that may have been why I still am sick a year and a half later... I couldn't rest which is key to healing this thing. I'm just upset at the whole thing and when doctors tell you it is all in your head it just starts to get under your skin and make you angry. I wish sometimes that doctors could get a taste of what it feels like and maybe they could empathize better with their patients and actually help them instead of making them feel like they are just crazy.
carisa- since you posted your EBV numbers are those numbers what you have all the time or was that during an active infection? How could you tell (besides the way you felt) if the infection was active or not? Was there a difference in your EBV numbers during those times? I'm thinking I'll have my doctor run all my EBV tests again every few months to see where I stand. I wish I'd had the tests run a few years ago once I felt great but if I do get better I'll make sure I do so I can compare the way I'm feeling to how my labs look and so if this ever happens again I can show them the difference if there is any that is...
Thank you for posting the link there is a lot of great information there. I read the Q & A section with Dr Garth Nicholson and was very interested in a few things he had to say but confused. Not sure if you might be able to give some insight on to what he is referring to. I know that I have EBV now and maybe I just need time for my body to heal (I got better before after a few years after originally diagnosed) but maybe it is because of an underlying infection or Mycoplasmas as he refers to? He said that when thyroid problems exist with EBV it is common that there is a chronic bacterial infection or Mycoplasmas that could be the underlying reason why you can't get better. I would like to explore this more but don't know what tests my doctor should run to find out if I this is the case. I went to his website but everything I find just seems like a foreign language to me and I don't understand what he recommends to have tested specifically and then once I know how to treat it. Could you lead me in the right direction on this or perhaps I should contact him directly via the webpage?
I don't know how I could tell the difference if it's active or not. I actually have a call into my doctor to discuss some concerns I have with my high numbers, so I'll ask her. It really scares me that they are so high. I'm really sick of feeling tired and I want it to end. I was in on the conversation with Dr. Nicholson and I too felt like it was a foreign language. So I understand where you are coming from. I think it may be time that i start looking into his remedies as well. We are in the middle of paying thousands of dollars for other things right now, i.e. surrogacy, etc. That is one of the reasons I didn't do anything right away. I'm always worried about shelling out thousands of dollars for something that may or may not work. Ugh, sorry I'm rambeling on......
As PlateletGal and I will attest to, I would recommend trying the Jernigan's formulas for a natural solution. $50 for a bottle or even cheaper if you can convince your physician to setup an account with them and order for you. A bottle should last you 1-2 months depending on how much you use. You would definitely want to start out slow, 10 drops a day or 20 drops a day, and just see what type of effect it has on you. For me, if I take too much, it actually gives me cardiac symptoms. Unfortunately, it is my belief that some of the pathogens (viruses, bacteria, mycoplasmas) are hiding out in my heart tissue so I suffer cardiac symptoms if I take too large of a dose. I recommend Microbojen because that really seems to do something for me.
What have you got to lose? It's natural, so it's not really going to give you any side effects other than possibly herxing from too much pathogen kill-off. The way I look at it is $50 is not a bad deal when I have doctors that can't tell me what's wrong and prescriptions I don't want to take because of side effects and the fact they are not natural.
I should add that I'm not promoting Microbojen as a "cure". I haven't got far enough in the program to attest that it cures. I believe that it could be a cure, but natural solutions take time and I'm not far enough along to make an overall judgment. I think it's a worthwhile treatment to check out and one that may be less of a hit on your finances versus pharmaceutical choices.
It is confusing at first and especially when you see your physician and they don't talk about this stuff. I was fortunate to have found a physician who has spent numerous years treating CFS patients... long before CFS even had a name.
What they are finding in many of these diseases like autism, MS, rheumatoid arthritis, CFS and fibromyalgia... is that we have a high rate of infections. This may include viral, but also intracellular bacterial infections, such as mycoplasma, Chlamydia pneumonia and Borrelia burgdorferi (Lyme disease). I have at least both (bacterial and high EBV titers... possibly others). So obviously if we have a low-grade, chronic infection and pathogens are involved... that is something that I feel is very important to address. The success stories from people who have been on antibiotics for these bacterial infections are amazing ! Not only CFS patients are getting better... but people with autoimmune diseases as well !
I highly recommend checking out and reading information on this. The fibro/CFS experts are aware of these infections (and other problems we've discussed... including thyroid) in CFS patients. You may want to print out this information and discuss with your physician. The good news is.... treatments are available. And like ott, I'm also on Jernigan's. Dr. Jernigan's formulas are natural, but they are working for me and not only do they address viral infections, but bacterial infections as well. He also has formulas for yeast and parasites... two things that are frequently seen in chronically ill patients.
"Treating chronic fatigue syndrome and fibromyalgia requires addressing the underlying problems."
Dr. Nicolson's website. It is easy to read and understand... click on "fatigue illness research" for information on bacterial (mycoplasma, etc) infections found in CFS and fibromyalgia patients:
One thing that I've learned is that if you have CFS.. you have to keep up to date on the latest research. There was a physician in my city on the local news claiming that there were no treatments for CFS ! Ignorance is still out there.... but there are treatments available recommended by the experts. Many of the experts have had CFS or fibromyalgia themselves.
Hi girls, I go to Dr. Podell, and the other day after going over my number from past test and recent test, plus a full exam in his office he diagnosed me not only with my long standing FM/CFS but with CREBV.
Yes, you can have reactivation of EBV. Mine was due to having my daughter's wedding and months of running, plus my son moving back heart broken because his fiance' and he broke up. Emotional stress is my trigger. I made it through the wedding Oct. 18th and in the end of October my body started to release the stress and the FM started to kick in.The fatigue had started and sore throat with low grade fever, swollen glands and a headache that was reminiscent of my original EBV infection back in the late 90's. My GP took blood tests. My mycoplasmas, Ebv, igg agg EBNA and the results left her with her mouth open. She said the numbers look like a recent infection, hmmm.
I brought these numbers to the FM specialist, Podell. He confirmed that it is reactivation of the EBV.
This has happened to me to different degrees during the past decade at differing degrees.
I can identify it by the heat and the headache with the slight sore throat. The headache lasts for over a month and the symptoms all over the body about 3 months.
I hope I have helped.
Oh, the mycoplasmas, I had M.pneumonaie. Test yourselves, it is not fun having both. Mine did not die with antibiotic therapy. I left it up to my immune system after weeks of meds. It took 3 years for the illness to show up with antibodies formed in blood tests.
Dr. Podell is going to do (Plateletegirl can help with the wording here) microbiological blood tests to see if the mycoplasma molecules have attached themselves to my blood cells.
If so it would explain further repeated weaknesses between EBV flare-ups and we can do something about it.
Thought I would share that I visited a Fibro and Fatigue Center and the doctor said my EBV is not reactivated, it is chronic. My EBV Early Antigen test is 160 and my EBV IGG VCA is 5,120 ! No one has heard of an EBV titer being as high as mine. No wonder there is so much confusion about reactivation and chronic EBV. I guess that is why you have to focus on your symptoms and not concentrate too much on the numbers.
I am in possession of my Lab Report. Will someone tell me why??? the Lab doesn't speak in understandable language in the "Interpretation"?
EBV 'antibodies' VCA, IgM............. less than 0.2
EBV Early Antigen antibodies (Ab)...
....................................IgG........... less than 0.2
EBV..., IgG................................... over 8.0 .............. High
EBV Nuclear Antigne Ab, IgG..........over 8.0............... High
Susceptible......... Antibodies Absent
Acute Infection...... Antibodies Present but Absent in NA-ABS
Convalescent......... possible Antibodies Present
Chronic or React.... Absent IgM, but poss. EAIgG, VCA IgG, NA-ABS
Old Infection.......... Absent Ab but poss in VCA-IgG, and NA-ABS
Why can't they say if I have the EBV infection or not in terms I can understand???? Or if the two High counts mean something else... maybe, just an infection from flu or something?
I have laryngitis and can't talk for over 3 weeks now and Tammy Flu, Steroids, and Antibiotics have not help me get my voice back.
Saw two Doctors and the last one said it just has to take its course but told me to have this EBV LAB test just in case????? Rest and don't talk.
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