Can somebody please give me a quick rundown on EBV and how long it's reasonable to expect the fatigue to last? My teenage daughter currently has elevated EBV numbers, and I suspect that the "flu" she had last January was mono. But it's now September, and she's still trying to sleep 14 hours a day, and is always exhausted. Is this normal?
The other possibility is that she didn't really get mono until this summer, when I know a close friend of hers got it. But if so, she never showed any obvious signs of it (other than this durn fatigue!)
Lots of symptoms (see journal), but none that I'd specifically apply to EBV or CFS. I just wondered if we could attribute at least the fatigue to EBV, instead of trying to lump it in with everything else and finding one catch-all diagnosis.
But you're saying EBV symptoms shouldn't really last more than 6 months?
Just so you don't panic...I have had several doctors tell me that EBV can last a couple of years and sometimes longer to recover from. Each person is different. It seems the average time frame is about two years. It just takes a long time and I think if she needs to sleep, I would let her. Her body needs it to repair itself. They can tell by the EBV test if it is an early infection (meaning recent) or a reactivated infection. I would find another doctor who can intepret the test and will take this seriously. You don't want her pushing herself now , it will make her stay sick much longer. I have had this for almost 2 years and pushed myself when I should have been resting because no one knew what I had. I think that is why I have been so sick. I also developed hepatitis from it. Make sure they check her liver numbers. Be careful with it.
Wow... I just read your journal and all of your daughter's symptoms. Bless your hearts !
Here is the information on EBV from the CDC below. From what I've read from the CFS experts, the sooner you treat EBV, the better. I strongly believe this and I honestly wish I could go back to the day when I had mono. I know now what I would have done to help prevent CFS and/or lingering fatigue.
So what are your daughter's physicians saying ? Do they believe that your daughter's additional symptoms are due to EBV ? Have you seen a physician who specializes in CFS ?
I can PM you some helpful links if you would like and what has helped me and something that may help. (Dr. Jernigan's formula for EBV)
There are things you can do to help clear the Epstein Barr Virus from your system.... at least that is what the experts are saying. I remember CFS expert & physican --- Dr. Ken Friedman had made comments in an interview with Phoenix Rising. He was furious that the student health care center where his daughter attended missed her EBV diagnosis. He said that by the time he found out that she had EBV, it was too late... "the damage had been done". She now has CFS and 10% of people who have mono... end up with CFS (According to the CFIDS Association of America) My friend's son had mono last year. His physician prescribed an anti-viral for him. I thought this was great... perhaps this is what Dr. Friedman referred to... that they could to ward off CFS.
Many people may have a high EBV titer and perhaps symptoms of EBV for years.... I honestly think these people should see a CFS physician and get it addressed ASAP. Of course CFS symptoms are :
A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:
cognitive dysfunction, including impaired memory or concentration
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
Other Common Symptoms
In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:
irritable bowel, abdominal pain, nausea, diarrhea or bloating
chills and night sweats
shortness of breath
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
weight loss or gain
The majority of people do not recover from CFS. Many people can continue working with it, but 25% of people with CFS end up on disability... sometimes right away and other times after dealing with it for years.
You said your friends son's physicain prescribed an anti viral for his mono. What exactly is that? I've always been told by physicians you just have to wait out a virus. In my case though it hasn't gone away.
What are your symptoms ? If your symptoms are listed above (the CDC's criteria for CFS), you should consider getting CFS ruled out.
My friend's son was put on Valcyte when he first was diagnosed with mono. I'm assuming his physician prescribed it to prevent him from getting CFS/ Some physicians are prescribing Valcyte to CFS patients. There is another drug that I believe is still a research anti-viral.... it is called ampligen and it is also being used on some CFS patients. For patients who are very ill with CFS.... there is hope now. Dr. Jose Montoya at Stanford University has had successful results with another anti-viral... valganciclovir in CFS patients. The co-founder of PetsMart was on the original study and from what I understood... he went from being disabled to jogging again. There are, however, risks with that drug and I'm sure side-effects with the other anti-virals.
To confuse you even more... there are antibiotic protocols for CFS patients that are having success. I was put on one of these and recently switched to a homeopathic sort of treatment that does the same thing. You know when the medications are working because you feel worse. It is the same thing that lyme patients go through when they are being treated with antibiotics, because the bacteria that is making them ill is dying.
There are also other ways in dealing with CFS or EBV.... some of them use just supplements and few meds. The information is on my website (listed in my profile) and I am planning on today moving the info over to the CFS forum (I'm the Community Leader for the forum)
If you need to find a physician who knows how to deal with EBV and CFS... consider googling "Co-Cure's Good Doctor List"
http://www.articlecity.com/articles/health/article_5855.shtml -- What Causes CFS --- by Dr. Mark Shaw
Yes, my doctor actually called Stanford for me to see if I could be included in their study. That was last year when she called and they could not fit me in until sometime in 2009! So at the time it was about a year and a half away. We declined, which is a good thing now because I have a surrogate that is pregnant with twins and they are due in Feb of 2009. I have been thinking about trying the valcyte. The only problem with me and valcyte is that I have chronic low white blood cell counts. Mine are always in the 3.2-4.5 range. I have had a bone marrow biopsy and some other tests to rule out any kind of blood cancer.
My CFS symptoms include-severe exhaustion in general and especially following any sort of mental or physical excercise, sore joints, brain fog, unrefreshing sleep for sure, night sweats for several years, tender lymph nodes, balance problems, virtigo, and food intolerances.
My doctor has pretty much ruled in CFS. I may still try and get into Stanford, but now I need to wait until after the twins are here and maybe a bit older than the newborn stage. The thing with me is that my symptoms will be here for months, this last round was about 11 months of pretty constant symptoms, and then it will lighten up a lot for months or even a year or so. My EBV numbers seem to be always elevated and very very high. Right now my symptoms are pretty light, unless I over extend myself. If I do that then I am exhausted for a good few days. I'm just worried about doing the Stanford valcyte thing because if I were to feel worse when the babies come, I don't know how I would be able to take care of them. I wonder how long that stage takes before you turn around and are feeling better?
Would you like me to PM you the same information I sent to dazedmom ? There are some antibiotic protocols (believe it or not) that are targeting the mycoplasmas and other pathogens that are probably responsible for the immune dysfunction seen in CFS patients. In fact, many people with autoimmune illnesses are having success on antibiotics as well (google "The Roadback Organization" and read testimonials). The treatment that I recently switched over to doesn't use antibiotics, but is successfully targeting these pathogens. Dr. David Jernigan is also successfully treating many lyme patients and his natural formulas are killing the Borrelia infections in these patients.
"Recent reports and publications indicate that in addition to mycoplasmal infections, CFS/ME and FMS patients have other chronic infections caused by other intracellular bacteria and viruses."
"Patients with CFS/ME and FMS can also have viral infections that complicate their conditions and cause morbidity."
~ Dr. Garth Nicholson - The Institute of Molcular Medicine
As far as the anti-viral treatments, my concern is how much they suppress your immune system. My Endocrinolgist also called Dr. Montoya at Stanford and said that Dr. Montoya's results from his second study (over 1,000 CFS patients) should be released shortly. He told me that he had success with the second study and so CFS physicians are anxiously awaiting. He may want to put me on Valcycte and I'm going to have to think about it. The protocol I'm on now takes longer..... but it isn't as risky as Valcyte. The only concern about this protocol is the herxing symptoms.... you feel worse on this treatment because it is killing the pathogens in your body and as the pathogens are dying.. it makes you feel like you are detoxing. It adds some stress on your organs and so you have to adjust your dosage accordingly.
With your low, but normal, WBC.... that is definitely a concern. I was reading about Valcyte on Dr. Podell's website and this drug does have some concerns. If I remember right, Dr. Podell had suggested using it on people who are disabled only. That may be why your physician is reluctant to prescribe it for you.
Hi ! I haven't gotten up to the Microbojen yet, but another member posting here has. I should send him a link to this discussion.
I think you'll be surprised at what Jernigan's formulas offer. I swear that I have as nearly as much herxing symptoms as I did on the antibiotic protocol. And I know it is the herxing... because I feel better when I take breaks.
I would definitely recommend talking to your physician about this and/or doing a phone consultation with Dr. Jernigan first. My mom did (she has Sjogren's) --- she said she was impressed that he seemed to know more about her condition than her own rheumatologist did.
I noticed that CFS patients seem to have to start out with fewer drops recommended on the bottle.
This is a long treatment... there is no quick fix from what I've learned. Since I started these pathogen killing treatments, I've noticed improvements along the way. And what is interesting is that I've even noticed skin changes... such as a mole that I've had since I was a child disappearing and then skin tags (never had them before in my life). The skin tags are now gone. I think this is actually healing. We grown so accustomed to treating our symptoms and not treating the disease.
Hi Carisa. I have been taking the Microbojen formula for about 4 weeks now, thanks to PlateletGal's numerous sources of information. I studied the Marshall Protocol a little bit but it seemed a little too extreme for me and no one has stated yet that I have CFS.
I do have high titers of the EBV virus and that's the only significant test that has been positive so far. I have had numerous tests (MRI, CT scans, ultrasounds, x-rays, cardiac tests, GI scope, and plenty of blood work) and have had little else result in a positive hit of some condition I may have. Probably the only other significant finding as of late is a slightly enlarged spleen that my PCP doesn't want to check again for a few months yet (EBV can enlarge the spleen).
So, as mentioned, my EBV titers are high. Up there with what I've seen a lot of other people post for high values (500, 1000, 2000). The first real symptoms of note for me started in late February and those were cardiac symptoms and just feeling plain crummy. For the last seven months, I have gone through a wide range of various symptoms that migrate. I might have joint and muscle pains one week and then the following week is some more cardiac symptoms and then maybe the next week is abdominal pain. Doesn't make a lot of sense other than a virus can course through your body and affect different parts.
I contacted the Jernigans by e-mail and asked for their recommendation of treating the EBV virus. They recommended starting with Microbojen. I was already taking some natural remedies through a holistic doctor I was seeing, but Dr. Sara J told me to have my holistic doctor test me out on the Microbojen. My holistic doc sells his own stuff, so he could easily been greedy and told me not to use Microbojen. However, he tested my body (kind of a muscle test) and my body told him it did need the Microbojen formula.
I started using the Microbojen during a period of a few days that I was actually feeling good for a change. Then about 3 days later, I hit of spell of feeling horrible. My main symptoms were chest pain, shortness of breath, palpitations, and just feeling out of it. I had already gone through the whole cardiac workup, so I had to keep telling myself that the heart was not the issue (I wimped out and went to the ER and they confirmed everything looked okay).
The thought was I was experiencing the herxing symptoms of viruses/mycoplasmas/bacteria being killed off in my body. I was taking 30 drops of Microbojen 3 times a day. PlateletGal thought that might be too much because of the low drop dosage that she could only handle for the Jernigans' formula she was taking. It seemed like a good idea to back off the amount of drops a little, so I am now at 20 drops 3 times day. If it is the Microbojen that was making me feel crummy from herxing, then it has lessened since backing off to 20 drops.
For myself, I also have to consider the remedies my holistic doc was providing. While I am taking a lot of natural mixtures, you can still overload your body easily by taking too much. And if your immune system is suppressed already, then it's not going to take much to get your symptoms flaring.
I feel I still have a long ways to go, but I am happy to report (cautiously) that my symptoms have seemed to have lessened in the last week. I had a CBC drawn last week as well as another EBV test. My EBV is still positive (I didn't get titer values this time around) but my CBC was probably the first normal one I have had in seven months. All values were actually in range for a change (previously, my lymphocytes were always down and occasionally some other value slightly out of range). I would like to think that my normal CBC is a result of things starting to turn for the better.
I was also able to see a doctor from the co-cure doctor's list on the web. He thinks I might have a two-pronged situation going on where I am having a thyroid/hormonal imbalance as well as the virus infection. I had some blood drawn for some in-depth thyroid tests and should hear about those results towards the end of the month.
So long story short, I would recommend Jernigan's formulas as a possible solution to helping your body start working like God intended. Microbojen isn't going to cure me, but it is meant to help kill off the nasties inside and get the body working to provide a good immune support system so that it can cure. With all of the crud in the air and in food and water and the chemicals we apply to our body, it's no wonder some of us get stricken with some type of mystery crud that doctors have a hard time figuring out.
I'm not as faithful as I should be sometimes, but I should because my holistic doctor and the doctors Jernigan are God-believing people who feel the human body is the best defense against ailments. While there's no promise of a cure using a Jernigan's formula, do you ever get a promise of a cure from a convential source, such as your primary doc? Probably not, at least I don't whenever I see mine. I would much rather pump natural components into my body versus the 15 prescriptions I could be taking by now to mask my symptoms.
Maybe Microbojen won't work for you. For the $50 it costs, it's probably worth trying. I'm still on my first bottle and it's probably going to last me 6-8 weeks based on how much I have left. So the Jernigans are not sticking it to us by providing a small bottle that runs out in a week's time. I have not done the phone consultation with Dr. Jernigan, but that's probably not a bad idea either.
The Herxheimer reaction (also known as Jarisch-Herxheimer or herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. Duration in syphilis is normally only a few hours but can be much longer in other diseases. The intensity of the reaction reflects the intensity of inflammation present.
The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.
That could have been a little too bold of a statement or maybe declared incorrectly. If I remember from Dr. Jernigan's website, they don't claim to offer a cure. Of course, they have to do this or someone is probably going to try and sue them. I think what I meant is the Microbojen will get my body healing the right way and then my body will take care of the rest at some point -- or at least it's supposed to.
Maybe the Microbojen formula does cure. It definitely does something and I can sincerely hope that it does provide some type of cure.
Sidenote, the wife just had on an episode of House and the doctor and his students started talking about viruses, how there are a thousand of them and it's very difficult to test for them and no cure can be offered. She made me stop watching.
Otto70-Wow, you sound ALOT like myself! I do have Hashimoto's Thyroiditis, which causes me to be hypothyroid, and I also have chronic EBV. My EBV titers have been as high as 2400-3200. They are almost always pretty high. My sypmtoms include night sweats, extreme fatigue, heavy arms and legs, stomach problems, dizziness, brain fog, caridiac symptoms, etc. I usually don't have them all at the same time, thank God, but I do have them all at different times. Right now I am going through a period where I am feeling a little better. It has been a few months, but I know it will come back again. It always does. I have also had all kinds of testing-MRI, several x-rays, colonoscopy, upper endoscopy, bone marrow biopsy, several CBCs, etc. My WBC is almost always low. It usually ranges inbetween 3.0-4.5. It has been 2.7, but that was only once.
PLATELETGAL & Otto70- I'm very scared of the herxing symptoms. I'm scared that I will die from it. Does anyone know if that could happen? I'm wanting to try this formula, I just need to prepare myself for these symptoms to come back even stronger than before. Any ideas?
"I'm very scared of the herxing symptoms. I'm scared that I will die from it. Does anyone know if that could happen?"
It is possible of course but I think that is for very ill people who have been sick a very long time and / or people who use too many antibiotics or in Jernigan's case... drops.
I learned that I needed to start out SLOW with the drops (I started out with 3 drops 3 X daily at first... just in case) and then keep raising the amount... as long as your symptoms are tolerable. Your symptoms will probably be the same symptoms you already have.. just a little worse.
I agree with PlateletGal, start slow with the drops. I went gung-ho and was using 30 drops 3 x a day. That's when my herxing seemed real bad. Did I think I was going to die? Kind of, just because I was having cardiac symptoms. Was it any worse then when I was feeling like crud without it? Not really.
I'm now at 20 drops 3 x a day. That seems to work fine and the herxing is not as severe. Whatever the doctors Jernigan have formulated into their bottles, I would say it works. Get a bottle and then just take it easy with the amount of drops. The herxing symptoms are probably not going to feel any worse than your real crummy days you have had with your illness.
Who knows, maybe after using Jernigans for a few months your WBC could improve. It's natural, so you won't be pumping toxins into your body.
I see it this way : if I don't address the pathogens that are making me so ill, then they will continue to be there and multiply. If I wait to do this treatment, then it may be too late.
This is why it is important to work with a physician when you are on this treatment. If you talk to Dr. Jernigan and have a phone consultation with him, he may be able to recommend what kind of physician would be best to see.
Oops --- I forgot to add something. There are physicians who believe that a weaknened immune system & pathogens can cause cancer. I know they've been doing a lot of research on this and I know they've also been finding links between mycoplasmas and cancer. CFS patients apparently have a much higher risk for thyroid cancer.
Well that's just great-I already have thyroid problems. I've heard the link between these issues and cancer and that scares me too! Well, I definitely think i'm going to try out these formulas. I guess it can't hurt. I'll just start out slow like you guys said. It is my cardiac symptoms that make me a little nervous of the herxing, but if I start out slow I could most likely control that. Do you two know how long someone is supposed to be on these drops before they start to turn around and actually get better? I know it probably depends on the person and how long they have been sick, etc.
I also had cardiac problems when I first started these pathogen killing treatments. I would strongly recommend talking to Dr. Jernigan first before you start this.... he does phone consultations and I think you will be impressed at how much he knows about these chronic illnesses, including CFS.
I think the treatment depends on how long the person has been ill and other factors.
Unfortunately, I haven't seen PlateletGal on here for over a year (And she was a wealth of information, too!); I really hope all is well for her. There's certainly nothing wrong with browsing older posts for any answers you may need, but don't be afraid to start a new post/topic for any questions you might have!
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