Author Topic: Why So Tired? From HepC Cured into Mono! Epstein Barr Virus is Closely Connected (Read 19592 times)

kimharvest · « **on:** April 24, 2016, 12:32:10 am »

Stopped the cure almost a year ago; couldn't figure out why I seemed to remain the 'living dead'. Got more blood test and after seeing something on the internet, asked to be tested for Epstein Barr Virus. They seem to tie EBV to thyroid problems, liver problems, granulomas and brain fog... why wouldn't they test for it as a general rule? How could the EBV survive after 4 months of Riba and Solvaldi? Clearing the hepc seemed to allow the EBV to thrive. Again; I am infectious without knowing it? Like I am at the tail end of mono without having a clue. And EBV can be chronic? How many of us with hepc have EBV? Anyone else? If this is the possible catalyst why isn't it dealt with? Big pharma; is your cure just a bandaid?

Luna7 · « **Reply #1 on:** April 24, 2016, 11:30:35 am »

Hi Kim...

I'm so glad you posted about this. I thought my problems were so strange that it would be useless to even mention it. I've googled it though and there are 2 medical studies that say there is some evidence that Epstein-Barr and HCV 'help' each other in some way.

When I was a teenager I got Epstein-Barr (mono) and was so ill I was hospitialized for 10 days because my liver became so inflamed.
Likewise with the virus that causes lip blisters (think that is herpes simplex)...was horribly ill.
I get recurrances of both (or at least I think I do)...easy to tell with the blisters on the lip when that virus is reactived, but not so easy to tell with Epstein-Barr (have a bunch of symptoms, and did get tested where it showed the virus had been active in more recent years, and has been hard to tell what symptoms come from HCV vs Epstein-Barr).

Anyway, today I will take my third dose of Sov/Dak but am worried I'll have the reaction I had yesterday -- it seemed to be an allergic reaction where, about 30 minutes after taking Sof/Dak, the symptoms of what I think is Epstein-Barr came out in full force to a degree never felt before!
My lungs became filled with fluid and I kept coughing, had a headache, neck ache, throat sore, mouth sore...I might go to the emergency room for my dose today to be safe as I don't want to go into anaphylactic shock! At the very least I will go to my neighbors after taking my third dose of Sov/Dak.

I had grapes the night before, and noticed some apricot juice I drank a couple hours before taking the Sov/Dak had grapes in it. Some think grapes increase the amount of Daklinza to a possible toxic level. So, maybe this is the main problem.
Then I did read here that some have reported increased allergies after treatment, and they theorized it was due to the inflamation lessening and so immune resposes would be less too.

Pfft...all a mystery. I just want to get this virus out of me, and I guess if the Epstein-Barr is still an issue I'll work on that, though they don't really seem to know what to do with that virus.
I did read a report on a forum where someone said they could go out in the sun again without getting a fever blister outbreak, so who knows, maybe lessening one virus (HCV) could make others affect us less.

What are your Epstein-Barr symptoms, and did the remain present during treatment, but increase after treatment?

KimInTheForest · « **Reply #2 on:** April 24, 2016, 12:27:07 pm »

I too had mono as a teenager when I was 14, about 1-2 years prior to when I think I contracted Hep C. (I always felt the reason I wasn't one of the 20% who can spontaneously clear Hep C is because my body was still so weakened from my bout with mono, which even after recovery leaves one fatigued for a very long time.)

When my mysterious post-tx malaise developed last August, my doctor checked me for mono using the "monospot" test, and it came back negative. She checked because I told her this malaise feels like a recurrence of my childhood mono - high fever, drenching sweats whenever I fall asleep, extreme fatigue, unable to get out of bed, lasting for weeks but never developing into a full-blown flu or any other recognizable ailment. (Also very swollen lymph nodes throughout body.)

Is there a separate test for Epstein-Barr virus? Or is the monospot the only test? I recall that Epstein-Barr is present for the rest of your life once you contract it. So perhaps a test for that would always yield positive? But perhaps a test for E-B can indicate quantity, which could show if it is active or dormant...?

Anybody know?

kim

kimharvest · « **Reply #3 on:** April 24, 2016, 01:10:50 pm »

Thanks for sharing ladies! You can show up negative for the mono test but still be active with EBV. There are four tests for EBV, one shows the past and three show currant infection rates. [EBV Viral Capsid Ag, IgG, EBV Viral Capsid Ag, IgM, EBV Nuclear Ag, IgG and EBV Early D Ag, IgG.] They should test everyone with hepc for EBV!! I saw an ad for the Medical Medium on facebook and thought it explained my problems, so I asked my clinic to test for EBV among others. My tests read 3 high infection numbers and the past one read it was 3 months to a year I was sick. My alkaline phosphatase was elevating and we were trying to figure out why. Seems to be the liver, not bones; so what is happening? Is the EBV rising my liver numbers and stressing the liver just like I still had hepc? And my blood pressure is stuck high, making life very hard. For months now I am pulsing at too high a level. All I am getting is double up your meds and see you in six months! Yikes! Someone gave me this: Thyme tea contains potent anti-viral properties and is essential for Epstein Barr, Shingles, Hepatitis, Influenza, Herpes, Cytomegalovirus, HPV, etc. If taken on a regular basis it can significantly help to reduce the viral load in the body which makes it highly beneficial for those suffering with Chronic Fatigue Syndrome, Fibromyalgia, Hashimoto's Thyroiditis, Rheumatoid Arthritis, Lupus, Vertigo, Tinnitus, and Multiple Sclerosis...

KimInTheForest · « **Reply #4 on:** April 24, 2016, 01:19:30 pm »

Thanks for the info, kimharvest! How do you make thyme tea? Just steep dried or fresh thyme leaves in boiling water like other teas?

kim

kimharvest · « **Reply #5 on:** April 24, 2016, 01:23:37 pm »

Luna7 - I didn't know I had it until now! The only clear time I have had has been during the cure, clearing mind fog and functioning, though sick from the meds. Since the cure I have felt horrid, tired, non-productive, not creative, fumbling. I feel the EBV has flourished since the hepc cure, I have since broken out with granuloma annalare, red bumpy spreading rings under my skin; high blood pressure, trouble breathing, mind fog, weight gain and extreme tiredness. Diet will be the answer. Check out the Medical Medium. He seems to know. All my best.

kimharvest · « **Reply #6 on:** April 24, 2016, 01:25:03 pm »

Here is the rest! Thyme tea also helps stimulate memory, ease headaches and muscle tension, soothe coughs, relieve fevers, and fight colds and infections. It also contains a compound called carvacrol which is an excellent natural tranquilizer and has a tonic effect on the entire nervous system. Thyme is a good source of pyridoxine which is known to play an important role in manufacturing GABA levels in the brain, aid in regulating sleep patterns, and benefit neurotransmitter function in the brain. GABA is also one of the best natural defenses against stress damage.
Thyme tea is a great purifying herb for the digestive tract and has been found to destroy certain intestinal hookworms and roundworms and aid in the digestion of rich or fatty foods. Thyme is also essential for urinary tract health and can help prevent infections and keep healthy bacteria in balance. Thyme has some of the highest antioxidant levels among herbs. It is packed with bioflavonoids such as lutein, zeaxanthin, and naringenin which have powerful effects on eliminating free-radicals and other disease producing substances from the body.
Fresh thyme can be found in the produce section of your local supermarket or health food store. Thyme is also an exceptionally easy herb to grow and can produce abundantly in both containers &/or home gardens.
Thyme tea is a powerful healing drink and can be made by infusing fresh thyme leaves in hot water and allowing to steep for 15-20 minutes.
 Thyme Tea
Ingredients 2 springs of fresh thyme 10-16 oz hot water optional: fresh lemon &/or raw honey
Preparation Place fresh thyme in a mug and pour hot water over, allow to steep for 15 min or more. Remove thyme springs or strain. Sweeten with raw honey &/or lemon. Sip and enjoy! smile emoticon
 Alternatively, a thyme infused water can be made by soaking fresh thyme springs overnight in a pitcher of room temperature water and sipped the next day for hydration & healing benefits.
 Thyme Water
Ingredients 2 whole bunches fresh thyme springs 32-64 oz filtered or spring water optional: fresh lemon, raw honey, berries, cucumber slices, mint etc
Preparation: Fill jug or pitcher with room temperature water and add thyme springs. Allow to soak on the kitchen counter overnight. In the morning remove/strain thyme sprigs and add lemon or raw honey or any optional ingredients you like. Sip water throughout the day for the ultimate hydration and healing benefits.
To learn more about which herbs and foods can heal and restore your body check out my new book Medical Medium: Secrets Behind Chronic & Mystery Illness and How to Finally Heal http://amzn.to/1VsZ4Qr

KimInTheForest · « **Reply #7 on:** April 24, 2016, 01:33:19 pm »

Thanks kimharvest!

Luna7 · « **Reply #8 on:** April 26, 2016, 10:08:47 am »

Thanks Kimharvest, I will definitely try some thyme tea after treatment.

It must be so frustrating to finally get rid of this virus and then feel worse!
So many questions...did the Harvoni do something bad or do other viruses go rampant once a competing virus is gone..

And Epstein-Barr....is that the reason for Chronic Fatigue Syndrome?
I read a medical report that said they suspect it contributes to the progression of Alzheimer's.

Kimintheforest, I don't understand those tests for Epstien-Barr at all, and wish I had asked for better explanation when the doctor said it had been active in more recent years.
They do seem to be studying all these viruses more now, so there is hope..

kimharvest · « **Reply #9 on:** April 28, 2016, 02:37:14 pm »

Luna: how is it going with your meds? Still feeling toxic? Maybe yogurt to coat your stomach before taking your pills? Sounds pretty scary! Do you live alone? I had to endure the cure all alone and basically failed! I was cut early. It is very hard. Just do your best, try not to fuss because you are going through a systemic poisoning and it is very jarring to the system. Stress doesn't help and neither does guilt. Be kind to yourself, try to find a supportive friend; and ride this wild stallion! Best of luck to you!

Luna7 · « **Reply #10 on:** April 28, 2016, 10:31:16 pm »

Quote from: kimharvest on April 28, 2016, 02:37:14 pm

Luna: how is it going with your meds? Still feeling toxic? Maybe yogurt to coat your stomach before taking your pills? Sounds pretty scary!......Stress doesn't help and neither does guilt. Be kind to yourself, try to find a supportive friend; and ride this wild stallion! Best of luck to you!

The meds are going ok now, thanks. That's a wise idea regarding taking the meds with food as this reaction did happen on an empty stomach.
It actually seems to be a good way to isolate what one is allergic to...eat a food in isolation...and is how I discovered I'm allergic to some sea salt.

I imagine I should call that bossy nurse and tell her about my histamine reactions. I was actually afraid she would say to stop taking it. I can only assume that some people are actually allergic to these medications, as it says in the spec sheet not to take it if you have an allergy to it.
I'm pretty sure you understand how I feel, being so sick yourself...I was willing to risk a severe histamine reaction over living life with such illness.

These medications we take affect a protein specifically in the HCV, and I do wonder if they will ever try doing something like this with whatever is specific to Epstein-Barr that causes it to replicate.
I can't say I've felt any Epstein-Barr symptoms this past week, but I know I might have to face that like you and Kim are (if that's what the forest Kim's symptoms were).

KimInTheForest · « **Reply #11 on:** May 09, 2016, 08:21:56 pm »

Quote from: kimharvest on April 24, 2016, 12:32:10 am

Stopped the cure almost a year ago; couldn't figure out why I seemed to remain the 'living dead'. Got more blood test and after seeing something on the internet, asked to be tested for Epstein Barr Virus. They seem to tie EBV to thyroid problems, liver problems, granulomas and brain fog... why wouldn't they test for it as a general rule? How could the EBV survive after 4 months of Riba and Solvaldi? Clearing the hepc seemed to allow the EBV to thrive. Again; I am infectious without knowing it? Like I am at the tail end of mono without having a clue. And EBV can be chronic? How many of us with hepc have EBV? Anyone else? If this is the possible catalyst why isn't it dealt with? Big pharma; is your cure just a bandaid?

Hi Kim. Are you treating your EBV in any way (besides thyme tea?). Is there anything that can be done to treat it? I am going to ask my doctor to run those 4 EBV tests in my ongoing quest to figure out why my health is still so wrecked 9+ months post-treatment. I only had the monospot test, which was negative.

If I don't have mono (and apparently I don't) then what would the symptoms be of active EBV infection without mono? When I look online for EBV symptoms, I just find symptoms for mono.

My primary symptoms these past 9 months are fever, drenching night sweats, swollen lymph nodes, extreme fatigue, iron-deficient anemia, low hemoglobin, red blood cells, neutrophils, platelets. I realize that could be any number of things. But specific infections that can be ruled out by a simple and painless blood test are something I would want to do before getting into bigger diagnostic procedures for other possibilities.

kim

sapphire101 · « **Reply #12 on:** May 15, 2016, 12:19:43 pm »

It has been a while since I checked in on the forum and as usual, I am amazed by the information found here.

EBV takeover makes sense and I do feel that after our HCV is cleared, some of the other lurking bad guys surface. Or at least attempt to be the new king of the hill.
I had some crazy joint aches and weird knuckle nodules that appeared right after treatment ended. No longer a threat now, but did get me worried about the next chronic disease club.

I like the idea of thyme tea and will give it a go. Thank you for the knowledge.

Luna7 · « **Reply #13 on:** May 16, 2016, 11:51:01 am »

Quote

EBV takeover makes sense and I do feel that after our HCV is cleared, some of the other lurking bad guys surface. Or at least attempt to be the new king of the hill.

I read that Epstein-Barr 'helps' HCV, and that HCV can also 'help' Epstein-Barr. I've about had it with all this helping and hoping getting rid of HCV will make the Epstein-Barr manifest less... and so far I'm just feeling better and better (over 3 weeks into treatment now).

FutureThinker · « **Reply #14 on:** May 16, 2016, 12:06:27 pm »

Luna, just keep thinking positive, healing thoughts -- I'm sending some your way right now! FT

kimharvest · « **Reply #15 on:** July 03, 2016, 11:34:57 pm »

Well I just got my results from one year after cure and it came in 'not detected!'! Even though my Epstein Barr tests came in no different than 2 1/2 months ago. I am remaining at high levels for at least six months now, maybe ever since the cure a year ago. I never felt better after my cure. That clarity I experienced the first month of treatment long faded. I am far more depleted with EBV than dying of hepc. My blood pressure continues to be too high, constant headaches with ear ringing, exhaustion and malaise, mind fog and confusion, uneven temperature with added joint inflammation. I wonder if they should routinely test EBV along with hepc. Either hepc kept the EBV in check or was masked by the hepc or even the cure threw off my immune system, and I now have diminished immune response. My test also showed a lowered immune efficiency. Chronic EBV seems to wear out the organs and lead to cancers. Whether I already had the EBV and it bloomed since the cure or I recently became exposed and with a weakened immune system, I caught it and it took hold. Either way, I feel they should screen for it, admit the two work together, and check for it after the cure. I hope the levels drop sometime because I can't function at all. I am so glad the hepc is erraticated, Yeah!, but nothing much has changed. I switched virus's! Of course I will do my best to fight this now, but after so many years of a faded life all the way to almost the end, to endure the horrid cure with a hint of health, just to see it was only one battle in a war I have little energy for. Anyone still tired post cure, it is worth it to check EBV off your list. My love to all dragon slayers!

KimInTheForest · « **Reply #16 on:** July 04, 2016, 02:02:50 am »

So sorry to hear about your ongoing struggle with this, kim! I know exactly how you feel when you are still not able to know what it feels like to be rid of Hep C so long after being cured. I felt "robbed" in some way.

I have been in a similar situation, and have been very seriously ill ever since finishing treatment, even though I went in with no known health problems or medical conditions. I have been pretty much housebound and disabled for most of the last 11 months since finishing treatment in July 2015. Virtually all of my signs and symptoms of my post-treatment sickness began DURING treatment (enlarged lymph nodes, anemia, teardrop cells, high lymphocytes, night sweats, and much more). So there is no doubt in my mind that the treatment is in some way responsible.

I was tested for many things post-tx including EBV, and everything came back negative.

At end of this month I will be 1 year post-treatment. However, I have FINALLY begun to see improvement in the last 3-4 weeks. And at present I am doing pretty well - and feeling elated about that!!! However my blood work shows continuing problems. And these are problems that did NOT exist in any of my labs pre-treatment. Everything in my case points to a problem with bone marrow and/or lymphatic system that developed during treatment and then never resolved. But my body says I am getting better even though doctors are gloom and doom. So I am just going to hang in there, and keep on with my daily regimen of vitamins, exercise, healthy food, healthy thoughts, practicing gratitude, etc. My own health improvement of recent weeks happened when I really doubled down on all of that and vowed to make my health recovery my full-time job. Prior to that I had been putting other people's needs and expectations ahead of my health recovery.

FWIW, I have been reading up on cannabis oil and I am convinced it holds a great deal of medicinal value for many ailments. If I were getting worse instead of better right now, I would be using it. Perhaps something you might want to investigate? It seems to have powerful anti-inflammatory properties, and inflammatory reaction is at the root of so many serious ailments.

Good luck. Us kims have to stick together!

I'm rooting for you (and for me too!).

kim

Determined · « **Reply #17 on:** July 04, 2016, 02:55:04 am »

Uh, wait a minute. It sounds like thyme tea will cure everything. Why haven't we seen this on the news? Why didn't my doctor tell me? Really? I think I'll go with the positive thoughts.

Seriously Kim in the Forest - I am thrilled you are feeling better. You really deserve the break, the cure, and new vitality. Keep up the good recovery. You really have earned it.

KimInTheForest · « **Reply #18 on:** July 04, 2016, 01:00:23 pm »

Quote from: Determined on July 04, 2016, 02:55:04 am

Uh, wait a minute. It sounds like thyme tea will cure everything. Why haven't we seen this on the news? Why didn't my doctor tell me? Really? I think I'll go with the positive thoughts.

Seriously Kim in the Forest - I am thrilled you are feeling better. You really deserve the break, the cure, and new vitality. Keep up the good recovery. You really have earned it.

I can't recall EVER seeing the mainstream news media cover non-pharmaceutical health remedies, although there are many such legitimate remedies out there for all sorts of ailments - and often with centuries of usage and success behind them. And most of our Western medicine doctors will follow suit in that regard - no mention (or knowledge) of alternatives to pharmaceuticals. It's not taught in medical school. So no surprise that non-toxic, plant-based remedies are not know to so many of us in our culture.

Thanks for the your words of support for my health improvement. I am pretty thrilled about it myself but don't want to count unhatched chickens and all that.

It's interesting... I have heard more than one person here say it took them a full year to recover from Interferon/ribavirin therapy from years past. I do very much suspect the ribavirin has been the culprit in my case, since my problems according to my labs involve low blood cell counts and bone marrow distress. And I have read that ribavirin will cause bone marrow suppression if the dose is high enough, which I think mine was. I felt very saturated. And it certainly cause reduction in red blood cells and hemoglobin (anemia), which I still have 1 year post-treatment, but did not have going in to treatment. So perhaps even when combined with the DAAs and not IFN, the riba can still be a loooooong recovery for some of us.

kim in the forest

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Author Topic: Why So Tired? From HepC Cured into Mono! Epstein Barr Virus is Closely Connected (Read 19592 times)