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Jan 28, 2019 · Dual Diagnosis of CLL and Acute Epstein Barr Virus - in Blood Cancers & Disorders

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

Jan 28, 2019 · Treatment for chronic epstein barr in Infectious Diseases

@sherryntn – I think of it more as an allergy shot – so its not like chemo…..My doctor has me on the injections once every 7 weeks – and I can come in earlier if I am really feeling bad with low energy at five weeks. As I have CLL and EBV I have had a oncologist suggest that I get a cortisone shot to give my body and immune system a break. Something he saw while in residency in Portland OR. I have yet to find Alopathic doctor/family physician who will give me one. – I am finding I have better luck getting relief with a Naturalpathic physician.

The other thing we did was bring in an expert to find and treat black mold in our house – which was found is a few places behind the wall board – and we removed all wall to wall carpeting. Both helped. I find I feel the best when I am next to the water with few allergy stressors on my system.

For LDI – Here is a better description that I found @

"Low-dose allergy (LDA) therapy and low-dose immunotherapy (LDI) are safe and effective treatment options for a variety of symptoms caused by food and environmental allergies. In addition, infections can trigger immune dysfunction and autoimmune diseases. Allergies and autoimmune conditions have been on the rise for the past 30 years.
How does LDA and LDI Work

LDA and LDI use extremely low doses of antigens in conjunction with the enzyme beta glucuronidase to down regulate an inappropriate immune response. This is also known as increasing immune “tolerance.” LDA and LDI are better tolerated than conventional allergy therapy, as well as being more convenient and effective. Conventional treatment with escalating doses of allergens often require twice weekly injections for 4 to 6 months, then continued at extended ongoing intervals. Low-dose therapy injections are only given every 7 weeks, and frequency is reduced over time as a patient’s symptoms improve. Contrary to conventional allergy injections, LDA and LDI doses are much lower, and there has never been a reported case of anaphylaxis.
Conditions Treated

LDA and LDI treat a wide range of immune dysfunction including food and inhalant allergies, chemical sensitivity, autoimmune conditions and symptoms triggered by infections such as Lyme disease.

LDA and LDI is effective at treating immune reactions including:

Infection – Lyme disease, bartonella, babesia, erlichia, mycoplasma, Epstein-Barr virus (EBV), cytomegalovirus (CMV), HHV-6, herpes, shingles
Digestive – food, allergies IBS, diarrhea, Crohn’s disease, ulcerative colitis, Celiac disease
Environmental – grasses, pollen, mold, pet dander, dust; multiple chemical sensitivity
Inhalant – asthma, hay fever (seasonal allergies)
Skin – eczema, acne, psoriasis, hives, vitiligo, alopecia
Autoimmune – inflammatory and rheumatoid arthritis, autoimmune thyroiditis, ankylosing spondylitis
Neurological – headaches or migraines related to food
Conditions such as chronic fatigue syndrome, fibromyalgia, symptoms from candida/yeast and inflammatory arthritis

Dr. Maderis trained in LDA and LDI therapy, and uses it to treat a variety of conditions. Call Marin Natural Medicine Clinic if you would like to schedule an appointment for LDA and/or LDI."

Good luck.

Jan 27, 2019 · Treatment for chronic epstein barr in Infectious Diseases

Three years ago I was diagnosed with chronic to acute EBV virus. A week later I was diagnosed with CLL as well. Both around the Christmas holidays which has changed my outlook on December.

What has worked Best for me is getting an LDI injection every 6 to 7 weeks – 5 weeks if I really need it sooner in which case my doc does not charge me for the injection. LDI- Low Dose ImmunoTherapy. I can't tell you whats in it. Only that it works. Perhaps some else here can say what the mix is? IF I go beyond 7 weeks I feel like crap and can hardly get out of bed. This was driven how this past August when I was traveling out of state. I went to long and it took a wheelchair to get me into the airport and onto the plane. I then slept for 5 hours and got a wheelchair to take from the plan to the car. I now never miss a dose.

I think of it as an allergy shot – but have been told that is not quite the right way to think about. For about 12 hours after the injection I need to rest, then it kicks in and I have energy enough that it allows me to work a 40 hr week – but not a straight job. Luckily I consult to NGO's and nonprofits on grants and strategic planning – so I make the work fit around my diseases.

My suggestion is to speak to a good naturopath in your area and add another member to your son's care team.

Wishing you all the best.

Jan 27, 2019 · Dual Diagnosis of CLL and Acute Epstein Barr Virus - in Blood Cancers & Disorders

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 .

Jan 3, 2019 · Dual Diagnosis of CLL and Acute Epstein Barr Virus - in Blood Cancers & Disorders

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.