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I am a female age 57. In June 2014 I developed fairly sudden

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intense fatigue and painful swollen...
I am a female age 57. In June 2014 I developed fairly sudden intense fatigue and painful swollen red knuckles- all of them on hands and toes even hurt. I have been diagnosed prior to this with fibromyalgia with many aches and tiredness before this but nothing like this. I had had large sting bite or something that caused 3 in diameter red raised place on lower leg in May that was still there in June. No tick or bulls eye seen but do live in woods and did find tick in bed 1 day. My Lyme test came back positive per MD. was given antibiotic for 1 month with no improvement in way I felt and had to be on leave of absence from job. Aug 14 2014 I had EBV test ordered: EBV early AG IGG 75.8. EBV nuclear antigen AB IGG >600, EBV AB VCA,IGM 600. Rheumatologist confired with an ID specialist and said those were the highest numbers they've seem of Epstein Barr. Another Infectious Dis MD said it was just a past infection. I continued to get worse with the fatigue and couldn't get house work or meals made or work. Developed worse pain in multiple joints, deep aching, depression. tendonitis in several places. Developed high heart rate and easy shortness of breath and had to have multiple tests including heart cath and put on metoprolol. Have had several UTI's and sepsis and pyelonephritis with one. Nothing is helping. Depression is worse, I cry about daily over something. I'm not even a very nice person anymore esp to my spouse. I have anxiety that I never had before, sleep apnea, low sats at rest 88-92 and on c pap and still always tired and have to make myself work even part time. We are about broke. I have been on vit d 5000 units daily due to low level, good multivitamin, vit b complex, lyrica, Cymbalta, clonipin to sleep, nuvigil 250 and now addarill 15mg 2 x day. increased bp meds prob due to meds to keep awake. I'm eating much more nutritious foods. Still tired continuous. It's been over 2 years. Any ideas? Sorry for the book. KA
Submitted: 1 year ago.Category: Eye
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Answered in 9 minutes by:
9/26/2016
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago
Dr. Phil, MD
Dr. Phil, MD, Medical Doctor
Category: Eye
Satisfied Customers: 56,992
Experience: Medical Doctor Trained at a Top Academic Institution
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Hi, this is Dr Phil, here to assist you. I am Board Certified with over 10 years of experience. I will respond with my answer shortly. Thank you.

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Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

did they rule out RA and lupus?

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Customer reply replied 1 year ago
Corp was 6.8. RA neg
Customer reply replied 1 year ago
I meant CRP 6.8
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

that is high.

Did they do an ANA or CCP?

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Customer reply replied 1 year ago
ANA neg 7/2/14, ESR 22 7/14, Lyme western blot igm p41 AB, it p 39 Ab and igm p23 Ab all present on 7/14 rest were neg. interpretation positive. HSV-1 HSV-2 Neg. ASO<35. RA qual neg 8/14. Para virus neg. lead neg, methemoglobin neg. iron and ferritin low but still barely in range. New thyroid nodules CCP must have been done 5/2015 and probably never but can't find results. Ordered at Cleveland.
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

are you a doctor or nurse?

your knowlege is amazing!!!

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Customer reply replied 1 year ago
RN x 37 yrs. thanks
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

what about fibro?

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Customer reply replied 1 year ago
I have been told I have fibro and chronic fatigue syndrome. Also many stomach issues. Are you an Eye MD?
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

no I'm an internist

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Customer reply replied 1 year ago
Ok I thought so but the thing said Dr Phil Eye Doctor for some reason.
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

Okay. Do you want to continue?

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Customer reply replied 1 year ago
Sure
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

what questions do you still have?

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Customer reply replied 1 year ago
I just don't know how to get feeling better. I'm soo extremely fatigued all the time. I can't keep my house work done and have had to decrease my level of work and cut hours to 10-15hrs week. Can't shop. Grouchy and anxious. Want to sleep 10-11 hrs per night and still tired and hurting.
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

what meds are you on?

can you list them all plus supplements?

do you exercise?

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Customer reply replied 1 year ago
Lyrica 150mg bid, cymbalta 90mg dly, lisinopril/ hctz 40/25 dly, norvasc mg dly (new) metoprolol 50mg bid, nuvigil 250mg dly, addaril 15mg bid- new, omeprazole 40 mg dly, clonazepam 0.75mg HS, B complex w vit c, multivitamin, tramadol 50mg PRN, ibuprofen, Tylenol. Spiralina, wheat grass, cacao powder in smoothies with fruit and greens. I do not regularly exercise like I should. I did more last year.
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

This is a lot of medicine

couldn't the meds be causing some issues?

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Customer reply replied 1 year ago
I've wondered but PCP doesn't think so. I backed down on lyrica and just hurt more. Less cymbalta didn't help. Clonazapam ordered 1 mg I decreased down some. I have a terrible time getting up but I did before starting it also I'll take it down to 1/2 mg. other suggestions
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

What about getting off clonazepam?

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Customer reply replied 1 year ago
I can try. But I had the fatigue like this before I was put on it. It was to help me sleep deeper.
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

have you been checked for sleep apnea or other disorders of sleep?

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Customer reply replied 1 year ago
I do have osa and am on cl pap . Machine has been checked, recent overnight at home pulse ox done w average sat of 92 w c pap on. MD said no change needed.
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

that is a bit low. when was the last sleep study?

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Customer reply replied 1 year ago
At home sat and heart rate 2-3 wks ago. In hosp study 2011.
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

I wonder if perhaps you have developed PLMD?

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Customer reply replied 1 year ago
I had never heard of it. I do get leg cramps sometimes. Have low iron. Spouse has never said anything about my movement? What do you think about the chronic Epstein Bar virus?
Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

Low iron is the biggest risk factor for PLMD there is!

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Eye Doctor: Dr. Phil, MD, Medical Doctor replied 1 year ago

Thanks for this question

Please don't forget a positive rating. I appreciate it.

If you have more questions just reply :)

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Eye Doctor: Dr. D. Love, Doctor replied 1 year ago
Dr. D. Love
Dr. D. Love, Doctor
Category: Eye
Satisfied Customers: 18,900
Experience: Family Physician for 10 years; Hospital Medical Director for 10 years.
Verified

The system says that you have asked for a response from a new expert, and while there was no statement of any specific remaining question, I notice that your last post included a question about chronic EBV that was not addressed.

While EBV infection is very common, and there is evidence of a life-long infection in most people, a chronic active EBV infection is very rare. The diagnosis of chronic EBV infection can be very difficult. Certainly, high antibody levels are part of the work-up, but there is other evidence that is needed. A chronic active EBV infection may be suspected in someone with chronic fatigue that also has certain symptoms, such as fever, swollen lymph nodes, enlarged spleen, or liver dysfunction.

Diagnostic criteria for a chronic active EBV infection usually involves the antibody titers plus evidence of active disease, either by biopsy of affected tissue (such as of affected lymph nodes) showing typical inflammation or the ability to find evidence of active EBV growth in the affected tissue. If the only positive finding is a high antibody titer, then that is considered to be evidence of a previous infection.

The evaluation for chronic active EBV infection would usually require consultation with an Infectious Disease specialist (as you have apparently done), and even may require consultation with an Infectious Disease specialist at a teaching hospital.

If I can provide any clarification, please let me know. However, if I have answered your questions, please remember to provide a positive rating (hopefully excellent), so that I am cre3dited for assisting you.

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Customer reply replied 1 year ago
What is treatment? I still can't tolerate working over a few hours a day and always feel exhausted and achy. I have trouble concentrating- can't seem to complete anything. I can't make decisions I have trouble thinking of words when I talk and totally forget things. Husband kids and family have noticed. I am definitely weaker also especially in my legs. I have been eating more fruits and vegetables and greens. What should I do or go?
Eye Doctor: Dr. D. Love, Doctor replied 1 year ago

There is no easy answer for treatment. If there is an underlying cause of the symptoms identified, then treatment would be oriented towards that condition. But without identification of the cause, treatment would be oriented towards relief of symptoms, and the most commonly used medicines are antidepressants or anticonvulsants, such as you are taking. If the current medicines are not effective, then it would be appropriate to try different antidepressants or anticonvulsants.

As for where to go, If your doctors are not able to make a diagnosis or adequately control symptoms, it would be appropriate to be seen at the regional teaching hospital, which is typically associated with a medical school.

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Customer reply replied 1 year ago
Thank you for your advice.
Eye Doctor: Dr. D. Love, Doctor replied 1 year ago

You are very welcome.

Please remember to provide a positive rating so that I am credited for assisting you.

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Dr. D. Love
Dr. D. Love
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Category: Eye
Satisfied Customers: 18,900
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Experience: Family Physician for 10 years; Hospital Medical Director for 10 years.

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