Dual Diagnosis of CLL and Acute Epstein Barr Virus -

Posted by oceantroll @oceantroll, Thu, Jan 3 3:31am

I am three years into a dual diagnosis of acute Epstein Barr Virus and CLL and I am reaching my wit’s end. Looking for help, advice, and support on dealing with pain management, widely fluctuating energy levels, a desire to exercise – but little energy to do so, diet, homeopathic help etc. The good news is that my numbers for both have changed little over the last 12 months. The bad news is I still feel like sh_t. I am self-employed and struggling to keep my business going.

Hello @oceantroll, welcome to Connect. I would like to invite @travelgirl to this discussion as she has talked about being on the wait & watch approach with CLL, but specifically about dealing with fatigue as an active person. Being diagnosed with two different diseases that both cause fatigue must be difficult. I see that you also found a chronic epstein barr virus discussion, but here is another one you may find interesting as well, https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/.

@oceantroll, while we wait for other members to join in, would you mind sharing what things you have tried to do to combat your fatigue?

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@JustinMcClanahan

Hello @oceantroll, welcome to Connect. I would like to invite @travelgirl to this discussion as she has talked about being on the wait & watch approach with CLL, but specifically about dealing with fatigue as an active person. Being diagnosed with two different diseases that both cause fatigue must be difficult. I see that you also found a chronic epstein barr virus discussion, but here is another one you may find interesting as well, https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/.

@oceantroll, while we wait for other members to join in, would you mind sharing what things you have tried to do to combat your fatigue?

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Sleep – as a result, I have gained 30 lbs which is why I am desperate to find help. I have also really scaled back on my own expectations of what I will achieve so I don't drive myself crazy. As a result – my work as a consultant to nonprofits is moving more towards grant writing. So I write when I feel "well" and do self-care when I don't. Too afraid to go back to 9-5 as I don't think my body can take it.

I also find that I am taking ibuprofen every day to address chronic to acute body aches – it feels like every day I have the flu. Sometimes it's so bad my brain kind of hazes out until I take more pain made – then the brain refocuses and I can get back to trying to do some work.

Thanks for the suggestions. I hope others will chime in soon including @travelgirl .

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@oceantroll Sorry I missed the first tag. I been out of town twice since then. Thank you for tagging me again.
I was diagnosed with the dual cancers follicular Lymphoma and Cecum cancer. I had surgery to remove part of my colon 3 yrs ago. I am on a watch and wait approach for Lymphoma.

I don't have the same symptoms as you do. But I can totally understand there are days where I don't feel like doing a thing.
I have to force myself to go do things. Including working when I feel like that. I work from home, so when I get over tired I hate to say, I been drinking a red bull. I know they are bad for us but once a week it gives me the boost I need.

Have you spoke with dr about trying different vitamins? I know I was told to take B12. As far as exercise this year I been bad. I have not been in the mood for the gym. But I have been walking and bike riding instead. But not as much as I would like too.

I saw a nutritionist too, who helped me come up with healthy menus to eat that would be best for me based on my illnesses. Foods that would help my try and heal. People with Lymphoma need Vitamin A, so she recommended sweet potatoes.

A lot of how we feel has to do with our state of mind. You have to force yourself to move. When I was first diagnosed I was obsessed with reading about both diseases. That i will say made my situation worse.

Might also suggest you contact the livestrong program they offer a fitness class through the local YMCA's that you sign up for. The first 12 weeks are free and give you numerous exercising options to get you motivated.
https://www.livestrong.org/

Hang in there. You can get through this.
Wish you the best.
Jackie

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@travelgirl

@oceantroll Sorry I missed the first tag. I been out of town twice since then. Thank you for tagging me again.
I was diagnosed with the dual cancers follicular Lymphoma and Cecum cancer. I had surgery to remove part of my colon 3 yrs ago. I am on a watch and wait approach for Lymphoma.

I don't have the same symptoms as you do. But I can totally understand there are days where I don't feel like doing a thing.
I have to force myself to go do things. Including working when I feel like that. I work from home, so when I get over tired I hate to say, I been drinking a red bull. I know they are bad for us but once a week it gives me the boost I need.

Have you spoke with dr about trying different vitamins? I know I was told to take B12. As far as exercise this year I been bad. I have not been in the mood for the gym. But I have been walking and bike riding instead. But not as much as I would like too.

I saw a nutritionist too, who helped me come up with healthy menus to eat that would be best for me based on my illnesses. Foods that would help my try and heal. People with Lymphoma need Vitamin A, so she recommended sweet potatoes.

A lot of how we feel has to do with our state of mind. You have to force yourself to move. When I was first diagnosed I was obsessed with reading about both diseases. That i will say made my situation worse.

Might also suggest you contact the livestrong program they offer a fitness class through the local YMCA's that you sign up for. The first 12 weeks are free and give you numerous exercising options to get you motivated.
https://www.livestrong.org/

Hang in there. You can get through this.
Wish you the best.
Jackie

Jump to this post

Thanks for your note. I am working with my naturopath on nutrition. I look into upping my B and A intake. My wife has been pushing sweet potatoes – so I am learning to like them was not a fan as a kid). Totally get the exercise thing. I once skied an average of 26 hours/week and I am down to 0. So the lack of exercise and ambition is killing me. Thanks for the lead on Livestrong. I take a look.

All the best
SAM

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@oceantroll I just read an article in a magazine about Epstein -Barr Virus and being tired. It talks about combating the disease with olive-leaf extract supplements of high doses of zinc and vitamin c. plus lysine.. Ask your Dr about those supplements, and can he recommend a dosage, or offer these in the form of shots? I see Drs advertising high doses of vitamin C locally by me. So assume the vitamin C is possible? If not google those vitamins with Epstein -barr and see what you can find. The article was in First for Woman January 28 issue.. Just picked it up at the grocery store. The story is titled "Tiredness Cured!"
Are you taking anything at all to help?
And remember I'm no expert on this, I just happen to read way too much. Let's say enough to make me dangerous with knowledge.. LOL..
Keep us posted how you feel?
Jackie

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@oceantroll Hi there! I'm new to this forum but saw your post and thought that I may have some helpful information for you that I just recently stumbled upon. If you have not yet heard of the Medical Medium, Anthony William, I recommend giving his info a read. He's a bestselling author of a few health-related books. In one of his books, Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal, he discusses (in detail) the Epstein Barr Virus. And he suggests juicing celery. Just celery. Nothing else mixed in. 16 ounces every morning on an empty stomach and allow the healing to begin. It's really quite amazing. Juicing celery alone has so many health benefits, come to find out. I sure never knew lol! But after stumbling upon his info I was intrigued. I've had many "mystery" health issues for the past 3-4 years. I can't get a proper diagnosis because my test results are conflicting for every diagnosis that some of my results point to. So the title of that book really caught my attention. I will be ordering it and reading the entire thing.

But my point here (sorry, I get long-winded at times lol) is the celery juice. Check out his website here (minus the space after the http) http ://www.medicalmedium.com/.

More specifically, check out his blog on celery juice here (again, minus the space after the http) https ://www.medicalmedium.com/blog/celery-juice-101. I started the celery juice last Friday. It's absolutely tolerable. It tastes like water with a hint of celery flavor. After juicing, pour over ice. Nice and cold. It's so refreshing.

And here is a link about a compound in celery found to destroy 86% of lung cancer cells…(minus the space after the http) http ://naturalsociety.com/celery-apigenin-kills-86-percent-lung-cancer-cells/#ixzz5euV9RdEB

I wish you all the best. God Bless!

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Also for supplements, CoQ10, Vitamin K2, Vitamin D3 and Cholestene.

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