This past Saturday, while browsing at the next-to-last garage sale (one of my favorite Saturday morning events), my ears perked up like a bunny when I heard a gal chatting with the owner of the house. I heard things like “sick for 5 years…fibromyalgia…a lot of pain all over my body…had to quit my job and live with my parents…in bed for two years…they had to bath me...” and more miserable images of something she was clearly glad to be over.
So, while my husband sat in the car with the patience of a saint, I lingered. When she finished chatting and was heading to her car, I walked towards her and said gingerly “I overheard your conversation. Can I ask you about the fibromyalgia and your experience??” I couldn’t help myself.
As a Thyroid Patient Activist who has stood up to the inane allopathic failure in the diagnosis and treatment of hypothyroidism, I knew that the majority of cases of “fibromyalgia” were due to undiagnosed or poorly treatment hypothyroidism, as well as the accompanying hell of adrenal fatigue, thanks to the garbage can TSH lab test or the stupidity of T4-only treatment like Synthroid. Yet, here was a young woman, Mel, who was now the picture of health. What was her story??
Mel’s story was a tale of sudden onset followed by five years of misery, all over body pain, immense fatigue, utter helplessness, debilitation, and neck lymph nodes SO swollen that they looked like two huge goiters – right and left. It was also a scenario of no firm diagnoses, yet no hesitation by doctors to make stabs– from fibromyalgia to an unknown chronic fatigue disorder.
But I knew right away what she probably had: acute Epstein Barr Virus (EBV) reactivation.
I knew because I had the exact same malady which once took away more than a year of my life (as compared to Mel’s horrific five years). And like her, with the use of meditation (and in my case, intense imagery and homeopathics), I got well as if it never happened.
And we also shared a reason why the EBV virus became activated in our bodies in the first place: STRESS. For Mel, it appeared to have nothing to do with anything thyroid-related, but an extremely stressful helping-vocation that was eating her alive. For me, it was the stress of having to be where I didn’t want to be, feeling overtly powerless…and on top of being on the lousy Synthroid.
And for thyroid patients all over the world, including you, the risk of reactivation of the Epstein Barr Virus is a constant threat. It can result from one or more of the following biological stresses:
- being undiagnosed thanks to the inadequate TSH lab test
- being on a T4 medication like Synthroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine, etc
- falling into low cortisol from adrenal fatigue
- having chronic side issues pulling your body down such as gluten intolerance or celiac, low ferritin, poor digestion, or making mistakes in your treatment
Even worse, add life’s stresses as icing on the cake, and you’re a sitting duck for the risk of reactivated EBV.
What is EBV? Epstein Barr Virus, also called human herpesvirus 4 ( HHV-4) is an opportunistic virus that actually lies dormant in at least 95% of all adults over their 30’s. It’s what causes mononucleosis, aka “mono”, as a teenager, but you don’t have to have had mono to carry the dormant virus. Wikipedia states that it also probably has a primary role in many autoimmune diseases, including ” dermatomyositis, systemic lupus erythematosus, rheumatoid arthritis, Sjogren’s syndrome, and multiple sclerosis.” i.e. this is one nasty virus!
Why do so many thyroid patients find themselves with it? Millions of thyroid patients live their lives compromised due to being on T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, and other T4 med brands. Additionally, patients find themselves with poorly functioning adrenals, poor digestion and other conditions related to a poor treatment – all adding to a lowered immune system, which allows the opportunistic EBV virus to take ahold, especially in the face of extreme or chronic life stress.
What are symptoms of a reactivated EBV? It can vary from patient-to-patient, but can include easy and excess fatigue, achiness, joint pain, all over body pain, swollen lymph nodes, slight fever, ringing in the ears, and a general I-don’t-feel-well. When my EBV antibodies were acute, I would be in bed for 2 – 3 days after pulling weeds for just twenty minutes while seated. I couldn’t grocery shop; I couldn’t do housework. Nothing. Nada. I also had constant ringing in the ears and achiness.
How do I find out if I have it?? Ask your doctor to send you to a lab to be tested for it. Or you can use Healthcheck USA–scroll down on the latter link to find the test. Put STTM10 in the form to get a discount.
How do I treat it?? It’s not easy. I personally benefitted from taking a prescribed anti-virus medication. Though that lessened my symptoms by 50%, it wasn’t enough. I then moved to homeopathic medications and some dedicated mental imagery to finally get rid of it, as well as lots of rest and the immune enhancing support of vitamins, minerals, supplements plus healthy strategies i.e. whatever it takes to nourish your immune system. Nourishing supplements include high dose Vit. C (2000 mg minimum), Vit E as mixed tocopherals, selenium (200 — 400 mcg), mushroom extracts, CoQ10, high dose B-vitamins, minerals plus plenty of healthy and raw foods. And ultimately as a thyroid patient, being on a MUCH better hypothyroid treatment with natural desiccated thyroid is the key, besides treating one’s adrenal fatigue, gluten or digestive issues, low ferritin, and all other related conditions.
Bottom line, once you are adequately treating your thyroid problem (see the current Options for Thyroid Treatment), addressing potential adrenal fatigue, low ferritin, gluten issues, low B12, for example, and using good stress management in the face of pressures within your life, your risk of having a reactivation of the dormant EBV virus is very low.
This entry was posted on Sunday, June 27th, 2010 and is filed under +Audience, epstein barr virus. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
John said:
Jun 28, 10 at 10:21 amGood info on an important topic. However,HealthCheck USA now requires a Doctors order.
(From Janie: most of the tests listed on the Healthcheck USA link in this post do NOT require a doctor’s order)
Janet Wilson said:
Jun 28, 10 at 10:24 amWow. …Makes me wonder if the issues I had prior to natural thyroid treatment were EBV. I had exhaustion that was VERY close to your description here — 15 – 20 minutes of playing outside with a 3 year old wore me out for a couple of days (as if I ran a marathon or something). Thankfully, within 3 days of being on Armour, I started to feel better.
Johann Mitchell said:
Jun 28, 10 at 7:12 pmThank you so much for this post!
I had EBV in 2005 and was VERY sick! It took me well over a year to recover. Worst of all, I was so broke that I HAD to continue working while I had it, although I did lose a part time job because I just COULDN’T do it anymore.
Lately, I’ve been aching all over just from a little walking or other minor exertion. Doctors have been pointing me in the direction of possible bone problems, and telling me I should get a bone scan to see if I have some other bone problem besides Paget’s, which I have in my skull.
Before I jump off the deep end and get lots of expensive x-rays, maybe it would be good to get the test you’re talking about.
Thanks for mentioning this. The other day I was thinking about one joint that’s been hurting a lot, and was even thinking that I hadn’t had a problem with that joint until the EBV. I don’t know why I didn’t think of this as a possibility! The things the doctors are suggesting are more improbable than a recurrence of the virus.
Elizabeth Free said:
Jun 29, 10 at 6:52 amYet another big piece of the puzzle. I have some sort of yet-unidentified auto-immune thing going on, and this looks suspiciously compelling.
I’m a single mom of a 10 year old son who has never seen his mom well. He sees pictures of me before I was pregnant and doesn’t believe they’re me. I’m a different color, different shape, and much different size. I don’t smile anymore. It’s NOT post-partum depression, and it certainly isn’t lack of motivation. I’ve worked full time since his birth, despite 15 surgeries and extended illness. I can see the light at the end of the tunnel, and I’m trudging toward it!! I work because I have no choice.
I get itchy feet and hands, which results in deep blisters that leave scars. It really acts like a herpes! I just discovered my thyroid is ‘missing’, my supraclavicular lymph nodes are gigantic. My gall bladder fell prey to this mystery virus (although I never had gall bladder symptoms), I have a lesion on my colon which has been biopsied and tested negative for colitis of any kind, cancer, and crohn’s. I’m swollen like a tick. I went from athletic and toned to fat and fatigued. 100 pound weight gain… it is my worst nightmare. I don’t know this woman in the mirror. It feels like prison.
I’m going to see a doctor that comes highly-recommended on another thyroid site (prescribes dessicated thyroid) this Saturday, so I’m going to bring info on adrenal fatigue and EB Virus. (I was already diagnosed with hypoadrenal aldosteroid something-or-another by my previous doctor).
My last doctor looked at my swollen lymph nodes and told me they were my thyroid. Next appointment (following neck and chest CT), he asked me when I had my thyroid removed, and scanned my neck for a scar. What an incompetent!! He concedes they are swollen supraclavicular lymph nodes, but thinks they’re nothing to worry about. Allow me to disagree?!?!?!?
WARNING — IF YOU HAVE SWOLLEN LYMPH NODES, every web site I have seen states they indicate a SERIOUS medical condition and need to be investigated. 80 – 90% of the time, they indicate and advanced case of cancer in the trunk. DO NOT IGNORE THESE!!!
Although all cancer scans have come back negative, my OB/GYN has urged me to find a “good” doctor (working on it!!!) and continue testing until we find out the cause. They don’t swell for “no reason”, and are of special concern when the other lymph nodes aren’t swollen.
Thank you for the EB Virus information. Like I said, it’s compelling and I sincerely hope this is the smoking gun.
Best wishes to all you other ladies and gentlemen who have fallen victim to CLUELESS doctors that can’t keep abreast of the latest research because they’re overworked. Keep researching, educate yourselves, and don’t give up. There is an answer.
Tonya B. said:
Jul 04, 10 at 8:13 pmThanks for this post. I had EBV 15 years ago and it was awful. I just gotten married, moved to another city and was putting my husband through school. Talk about stress! I had horrendous bone pain which nothing touched and a chronic sore throat which only happened on one side of my throat. The only thing which seemed to help was getting B6 and B12 shots on a weekly basis. It took almost two years to recover. Thirteen years later, I have the same symptoms and think the EBV is back. This time though it’s my thyroid which had swelled up to the point of cutting off my airway. I had a total thyroidectomy and thanks to you have been on natural thyroid since. I am fortunate in that I have a wonderful compounding pharmacy in town which makes my thyroid now in a time released formula. The pharmacist has also developed a transdermal way of delivering the thyroid medication if for some reason you can’t take the medication orally. I thought we might have to go down that road due to my diabetes medication blocking the thyroid meds. However, now with the time release formulation, I am doing much better. I got caught up in the Armour mess when they reformulated. I will certainly now be on the watch for EBV though after reading your post. It’s scary.
Shannon Oddis said:
Jul 22, 10 at 1:38 pmEBV is actually HSV 6, a strain of herpes. If you look at some of the research out there is shows that some of the lab rats are starting to make the connection. They now think that Fybromialgia and EBV are one in the same.
Sally Annne said:
Jul 25, 10 at 4:08 amI had mono at age 19 which is EBV and sometimes I wonder if it ever left my body. I was diagnosed with Hashi’s years ago but recently was told I no longer have the antibodies but sure am still hypo. I am on Armour now after fighting to get it. I dont feel well on it but off of it I am bedridden with pain, fatigue, brain fog, depression so it does help. Most of my issues I think are sleep apnea, insomnia and circadian rhythm issues. It is hard to tell what the suffering is really from sometimes. I hear that most Americans have had EBV. I have also read of the increased incidence of lymphoma in people who have had EBV. They all seem to meld together and it is hard to separate and understand the role each issue plays in the suffering.
(From Janie: Sally, you need to be chewing up the Armour to release the desiccated thyroid from the excess cellulose. You also need to explore if you have adrenal fatigue, and treat it if you do: http://www.stopthethyroidmadness.com/adrenal-info )
Richard Coers said:
Jul 26, 10 at 11:06 amI could be a poster child for this subject. I had not been feeling well for a long time. I was on synthroid and antidepressants. After working 20 days in a row, plus long hours on a really stressful project, I started getting rolling headaches. Pure misery! Then I woke one morning and my right eye had rotated off center and had limited travel. I was admitted to the hospital and after 5 days of testing, all they could find was elevated EBV titers. I then found a “life saving” holistic doctor that put me on Armour. I was still on disability for 6 months but made a comeback. I was also found to be gluten and dairy intolerant. I am able to work full time now. I had to switch to a custom compounded thyroid when Armour was impossible to get. Within days, I started backsliding. I am now on Erfa and am loosing weight and feeling better. I can still have bad days, but am sooooooo much better. Keep up the good work!!!!!
Christy B. said:
Jul 26, 10 at 9:32 pmHello, has ANYONE out there ever heard of having ACUTE EBV for over a year? I know the old EBV will always be present on lab, but all of my doctors seem to be puzzled why my ACUTE EBV keeps showing positive, it’s over 2.0. So far, my Rheumatologist said my lab for early Rheumatiod Arthritis was double the high limit. (my sed rate & RF are always fine, it was some specialized test that checks for early RA). The Rheumatologist wants to start me on some injection, but says due to my possible compromised immune system, she wants clarification on the ACUTE EBV, and to see an infectious disease Dr. My HIV, and Hepatitis Panels are all negative. I am also found to have Hashimoto’s,(Double the high limit,I think 65). BUT, my TSH, T3, T4 are always normal. Endocrine Dr. wanted to start on Synthroid due to the fatigue, but it made me VERY jittery, and I stopped taking it, my Dr. monitors my thyroid regularly by TSH, which is 1.??, turning toward hyperthyroid without the synthroid. I do have a hx. of Melanoma, Level 2, and I am very anxious ALLL the time, for no apparent reason. Also, VERY NOTICEABLE short term memory problems, that appear to be worsening. Anyway, any good advise would be appreciated. Thank you!
(From Janie: I had “Acute” EBV for a year, but worked hard to improve my immune system and knocked it down after that year. When you have Hashi’s, you canNOT go by the TSH. Read: http://www.stopthethyroidmadness.com/hashimotos And learn why Synthroid is the worst med you take: http://www.stopthethyroidmadness.com/t4-only-meds-dont-work )
Kathy G. said:
Jul 28, 10 at 9:40 amChristy, in the 1970’s, I had Acute Mono for one and a half years. I had positive tests for 6 months, then felt better after that so I had no more testing. After that I was fine for 6 months, so I got pregnant and had no problems then. However, about 6 months after the birth of my child, the virus came back on a recurrent basis. I went all the way through labor, then had to have an emergency c-section. I breast fed my son and he had colic (which I deduced, after the fact, was probably due to the enzymes in the pineapple juice I was drinking which curdled the milk). I even traveled. But looking back, I believe what retriggered the Mono was when I began to exercise again. I went to Nautilus before the birth but could not return immediately afterwards. I feel it was the resistence exercise combined with the stress and exhaustion of caring for my son which allowed this disease to return. To this day, if I have to go to physical therapy, my lymph nodes will swell some times for months on end. Over the years, I’ve learned that when I feel the pain in my left shoulder return (referred pain from the spleen), to take some anti-inflammatory and relax. Now to the thyroid connection. Pregnancy can change your hormones and you can become hypo or hyperthyroid. I didn’t notice any change at that time, but about ten years later I realized I had a problem. (My mother had thyroid disease and so do my siblings.) But as you know its almost impossible to get it properly diagnosed or treated. I had to go to three different endocrinologist over a ten year period before I ever got any helpful treatment. The last doctor even adjusted my dosage three times before I got any real relief. So don’t be afraid to change your doctor if you’re not getting any help. I also experienced all of the problems everyone else has with their medication. The synthetics didn’t work for me, Armour did. However, recently I heard about natural hormone replacement therapy. Apparently, all of your hormones have to be balanced in order for your body to operate in an optimum state. These medications merely replace what your body is missing and are not like the synthetic hormones women took for years which caused so many health problems. These are used by both men and women and are prepared in a compounding pharmacy especially for you so that you’re assured that you receive the same dosage each time, which did not happen with most thyroid pills. I have been taking both compounded Armour thyroid and other hormones for about 18 months and I’m feeling much better now.
Dave said:
Jul 28, 10 at 12:09 pmIts not just EBV that is the problem. I have been on Naturethyroid for a few years, I have tried T3 only and what I have found that most of my problems are from infections.
I would argue that most of the people on this site are harboring infections. These infections probably caused the autoimmune thyroid in the first place. Then having low thyroid leaves a person with a weakened immune system.
I have had to try various supplements, antibiotics, anti-virals, and fungals but I am getting my health back.
One of the reasons you may still have hypo symptoms is infections. As you people will research and (I know you will) many will find out that they have the same problems. EBV, CMV, Chyamidia Pn, Mycoplasma, Lymes, Candida.
For some eating correctly and taking thyroid will be enough but I suspect that as we get more and more toxic as a society more people will have problems getting regulated.
I DO NOT recommend the Fibro and Fatigue centers. They are money hungry. I suggest many of you find a doc willing to treat infections and or another doc that will treat the thyroid.
I believe that these autoimmune conditions can be corrected. I have done countless hours of research. I am glad to see EBV mentioned on this site but know this people that is only ONE of the several infections you have.
For me I have found a few medications to be wonderful drugs for me. I was against antibiotics and prescription drugs but have found they are necessary for my improvement.
I think if someone is not responding to thyroid treatment they need to look into infections and or food allergies. I believe it is a big mistake to add hydrocortisone in many cases. I know you will disagree but hydrocortisone will supress the infection. You will feel better slightly then will get much worse.
There are many people that are on the marshall protocol that have lowered there thryoid antibodies, and got there adrenal functioning back with out steroids.
I have talked with several people that have tried various amounts of thyroid, steroids and only got better when they added anti infectious agents to there regiment.
I do not know everything, I know some of you will disagree with me, but this is what I have found after years of trial and error.
Your thyroid is malfuntioning for a reason. Find that reason.
Hope you all heal well.
(From Janie: Dave, yes, there can definitely be a infection/inflammation issue going on in many. Sensitivities are other issues that can need investigation, too, such as gluten intolerance. But there are several years of success by patients with cortisol that is hard to refute. Cortisol supplement works when the adrenals are proven fatigued. )
Melissa said:
Aug 08, 10 at 5:24 pmWhich anti viral perscription medication did you take Janie? I would like to know so i can ask my doctor for it.
(From Janie: it was amantadine.)