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Avatar universal

How on earth do you get a diagnosis?

I had mono in 2003, a very acute attack in that I was on bedrest for about 4 months.  I slowly started to get better after that (which means I could get out of bed to shower without crawling to the bathroom) but I've NEVER felt 100% since.  I went back to the doc in 2004 to figure it out, but she didn't test me for EBV or anything, just hypothyroidism and iron levels, the normal stuff.  Everything was normal, and the doc said it was in my head, eat better, etc.

So I've been thinking I'm crazy or lazy every since.  I've been able to (barely) keep my job--but had to go part time last year because I just can't wake up, even after 10-12 hours of sleep!  I just went back to the doctor recently, and they tested for everything under the sun, including for EBV and CMV.  Everything is normal, except:  I may be borderline hypothyroid, and my CMV IgG antibodies are over 100 ug/l but the normal range is 0-14!!  They didn't test my EBV levels, but it did show that I was positive for that (duh).  The doctor still isn't going to do any more tests to explore my high CMV level or test my EBV titer--she says that the levels don't mean anything.  

Ok, so either I'm crazy/lazy, or I have something similar to chronic EBV, CMV, or CFS.  My question is a two parter:  do my symptoms (described below) sound similar to those of you have been diagnosed with chronic EBV/CMV, AND, how on earth do I get the doctor to give the appropriate tests for diagnosis?  What would I even ask for??

Also, can anyone explain why high titers of antibodies correlates to feeling like ****?

Symptoms:

--I always, always have phlegm/soreness in my throat.  It gets worse during and after any sort of physical activity or stress.  As EBV lives in the throat/nose, I find this suspect.  Does anyone else get this?  It only started after contracting mono.

--Very, incredibly, tired.  Esp. in the morning, and even after a 'normal' 8 hours of sleep--I require 10-12, at least, to function.  I describe it to my boyfriend that it's as if I'm always coming down with a cold--that tired, worn down feeling.

--i'm moody and achy.  

--any sort of physical activity leaves me sore and it takes me a few days to recover.  I call it my 'workout hangover.'  As I used to do Tae Kwon Do 3 days a week for 3 hours/day, this is very disheartening.  I have had to cut my workouts to just walking briskly every day, otherwise I'm in bed for the next two days.  Even brisk walks trigger my throat symptom.

--mental function/concentration has gone way, way down.  I can't remember anything anymore.  I used to be able to quip quickly back and forth with people, but now it takes a minute for what they said to even sink in.  I can feel myself slipping...

--i feel dizzy, alot.  I can't really stand up quickly, and after any physical activity, I feel like I'm going to pass out.  nausea usually accompanies this feeling.  
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Avatar universal

CMV could have been the trigger.... but you could also have an underlying bacterial infection as well.  This is just something that I'm reading more about and has happened with me and my condition.

Helpful - 0
Avatar universal

Thanks again PlateletGal,

I just came from an appt with an Infectious Disease Doc who more or less told me that I nuts to think that my neurological problems could be cause by my CMV infection.  I think I just may have to find a qualified specialist in the US as it seems that specialists in Canada are behind the curve on this.

Many Thanks again and God Bless.
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Avatar universal

Antivirals help many CFS patients. There is one antiviral in particular, ampligen, that has helped CFS patients have a better quality of life. However, ampligen has not been FDA approved yet and the cost of this research drug is $20,000 a year ! In addition to this.... these antivirals are immunosuppressants and the fact is an estimated two-thirds of patients with Chronic Fatigue Syndrome have bacterial infections and high frequencies of viral titers. So if we have a bacterial infection and are taking immunosuppressants, I would think that that could cause us problems down the road.

Prof. Garth Nicolson has been posting in the autoimmune diseases (expert) forum. He is an expert on the role infections play in chronic illnesses and the treatments for these infections. Most physicians are an estimated 10-15 years behind in research and may not be familiar with mycoplasma infections. In fact.. at this time, the standard laboratories do not test for such infections. Here is a link to the expert forum and also to his website:


http://www.medhelp.org/forums/Autoimmune-Disorders/show/358

http://www.immed.org/illness/treatment_considerations.html




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Avatar universal

Thanks PlateletGal,

I find your comments very insightful.  I have been sick for over a year (with neurological problems) after a CMV infection that kept me in bed for 3 months.  All the Doc's I talk to say that there has never been a link established that shows a relationship between CMV/EBV and disorders such as MS.  Curious - didn't they say that about smoking and lung cancer?

What about antivirals - does that provide any hope for folks who suffer from EBV/CMV infections?  Anyone have any experience?

Dad of 3
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Avatar universal

I think you're right... that the EBV was your trigger, just like it was the trigger in my case that led me to get a CFS diagnosis and have a positive ANA titer. I'm finding out now about these stealth pathogens and I'm currently on a treatment that targets these pathogens that are found in CFS, fibromyalgia, sarcoidosis and autoimmune diseases.

I was just reading today in Dr. David A. Jernigan's new book, Beating Lyme Disease - pg. 18, that "many case of MS and ALS are misdiagnosed and are actually what some call "neuro-borreliosis". This was research that was recently done by Dr. Lida Mattman, Ph.D. and the results are going to be published soon. Apparently they have identified another strain of Borrlia spirochete that has been found in every case of MS.

You may want to google bacteriality.com and also "The Institute for Molecular Medicine" --- there is some really fascinating information on there about these stealth pathogens that have been identified in patients with CFS, GWS, FM and various autoimmune diseases.
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627388 tn?1222198212
Yes, it is funny about the connection between EBV and MS.  From what I was told by my neurologist and from my own reading it appears that approximately 90% of the world population has EBV antibodies in there blood serum.  For roughtly 80% of those EBV positive people, they have no symptoms at all and the remaining 20% of people may develop complications like chronic fatigue syndrome-mainly in the US, Burkette's Lymphoma in peoples of African decent, and nasopharageal cancers in asian populations.  For some reason, it is known that people with MS almost 90-95% of the time have very high EBV antibody titers and they remain very high throughout most of there lifetime.  I just find it ironic that my health was never the same after I contracted the EBV virus and since that time I've developed these MS symptoms unfortunately.  My belief is that based on my genetics I was more suspectable to developing MS and when I contracted the EBV virus my immune system couldn't fight off this infection and it eventually went haywire and those EBV antibodies started attacking my myelin sheath instead triggering my MS.  That's my strong belief but its an unproven hypothesis.
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627388 tn?1222198212
Yes, I did speak with my neruologist about doing a muscle biopsy.  When the CPK results were abnormal in March the neurologist discussed doing a muscle biopsy and having the results be examined by a neuropathologist.  But, then my CPK values went back to normal and I had no pain/muscle, soreness and my severe muscle weakness went away he felt that it would not be necessary at that time.  He did not want to put me through an expensive and also invasive procedure when the test result may not contribute to a meaningful diagnosis.  Also, the EMG result were normal indicating that I had no evidence of a primary myopathy disease.  There is an inherent sampling problem with doing the muscle biopsy i.e. you many have a muscle problem but the biopsy will frequently come back normal because you have to choose the correct muscle group to take the sample from. Also some muscle fibers within the same muscle group(s) many appear normal and if you take a sampling in that spot the results will be normal but if you take the sampling a few centimeters over within the same muscle group the test may be abnormal.  So usually doctors like to see an abnormal EMG result to help them identify the best location to take a sampling from the muscle.

Yes, my mono/EBV infection preceded (2003) my major neurological symptoms.  I had never been sick in my life till I developed this infection and suffered from severe fatigue, periods of excessive daytime sleepness and lithargy and depression.  In December of 2007 I developed severe balance impairment, difficulty walking, altered senstion, low muscle tone followed by muscle spasms etc.  Below you will see a post I wrote on the MS forum that discusses the link between EBV and MS.    

Dawn
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Avatar universal

I'm sorry to hear what you are going through. You may want to ask about the Holter Heart testing and also ask your neurologist about doing that muscle biopsy. I can tell you though that normally CFS patients have very low blood pressure. We often have POTS (postural orthostatic tachycardia syndrome), and our blood pressure will suddenly drop when we stand up and our heart rate will be over 100 bpm.

I hope that whatever you have, that you will continue to post here and keep in touch. Out of curiousity, did you have mono symptoms before you had this chronic illness ?
Helpful - 0
627388 tn?1222198212
Thanks for reading my post I really appreciate it.  I've only been tested once using western blot analysis for Lyme disease and the results were negative.  I wil probably ask the neurologist to test me again for Lyme.  As far as the CPK test the normal range of a women is usually between 70-140U for total CPK.  In march my first total CPK test was around 800. Then about a week later and isoenzyme CPK test was done to determine if this enzyme was being liberated into the blood plasma due to break down from the skeletal muscle usually from a physical trauma type injury, cardiac muscle usually seen in heart attack, or from nervous tissue due to stroke.  At that time the CPK was 1975 U and it was all coming from skeletal muscle not from cardiac muscle.  This second measurment was taken right after I had attempted to start exercising again after a long bout of inactivity and during my 2nd episode of severe MS symptoms.  When I had my 3rd episode of major neurological impairment which begain in August and is still on going the neurologist repeated the CPK test again and it was around 70 U and also another liver function test was done and it was also normal.  Honestly, during these 3 episodes of severe muscle weakness, fatigue, balance impairment, dizziness, altered muscle tone/spasticity fluxuating with low muscle tone I have questioned if I had some underlying cardiac problem because I just feel so dame weak.  I have thought about the idea of having a stress EKG done.  Do you think 24 hr EKG holter testing would be better than a stress EKG?  The last time I went to the neurologist all I did was walk maybe 20 feet from the waiting room to the exam room and my heart rate was 140 bpm and my blood pressure was 160/100.  However, I'm doubting that I have CFS because I dont believe that someone with CFS would have such severe fluxations in their muscle tone to the point where they walk so abnormally.  
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Avatar universal

I just read your post (most of it.. my allergies are bad today and with the CFS, I'm quite brain-fogged right now). I'm wondering how many times you've been tested for lyme disease and I ask only because I know that often people with lyme will test negative. If you've only been tested once, I would suggest getting tested again. I'm also wondering if you've had your CPK tested again ? I can tell you patients with CFS have cardiac issues... however, I'm told that their CPK levels have been normal (I haven't had mine checked). Apparently pathologists have found cardiac damage in the hearts of CFS patients who have expired.

You may want to consider getting heart testing done. The Holter Testing is one of the tests that apparently all CFS are failing. The results of one study found that all 60 patients with CFS showed repetitively flat to inverted T waves alternating with normal T waves.

http://www.treatmentcenterforcfs.com/cfs_publications/index.html
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Avatar universal
thanks for all of your comments, it makes me feel much less alone.  No one seems to understand why I can't just nap a little bit and be raring to go out later, I'm only 29!  My next step was to see a counselor to see if maybe there was an emotional component contributing/causing my fatigue, but as I'm generally happy go lucky (ie not depressed), I think I'll try to find another doctor to explore this a little further.  
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627388 tn?1222198212
Hi plateletGal!  

Thanks for responding I'm glad I joined the CFS board.  I am also a member of the MS and EBV boards as well.  I have read and researched some about EBV and CFS because  one point I thought I had CFS.  Take a look at my post titled "Do I have MS, CFS or both?" on the MS forum.  Now my neurological symptoms have gotten so severe since December I now believe I may have MS........Unfortunately! So I just found and joined this website yesterday and so far everyone has been nice and supportive so I'm glad I joined.

Dawn
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Avatar universal

Hi watson ! I'm glad you found this board and the fibro / CFS board.

I agree... Dr. Teitelbaum is yet another physician who has successfully been treating many CFS patients. Two other physicians who I've read have CFS are Dr. Mark Shaw and Dr. Garth Nicholson. Both of these physicians have suggested treatment protocols online and have committed themselves to helping other people diagnosed with this frustrating and sometimes disabling condition. And I also like Dr. David Jernigan's treatment protocol.... he's successfully been treating lyme patients with natural formulas and other chronically ill patients. He was diagnosed with lyme disease and knows how all about these autoimmune diseases and "syndromes" out there.


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627388 tn?1222198212
Check out the website http://www.endfatigue.com/.  Dr Jacob Teitelbaum, M.D. he is a leading expert in CFS and he also suffered from CFS himself.  His website discusses many treatments for CFS those include the typical allopathic medications used to treatment the symptoms of CFS as well as alternative treatments for those patients who cannot tollerate taking perscription drugs.

Good luck to you.

Dawn
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627388 tn?1222198212
It sounds like you have a severe case of chronic fatigue syndrome that was triggered by the EBV/CMV infections.  In some ways you are a lucky in that many people who have chronic fatigue syndrome never know the cause of it however you know that in your case your chronic fatigue syndrome was triggered by these viruses.  Unfortunately, many people with chronic fatigue syndrome do to doctor after doctor and all the tests come back normal so the patient is left feeling like they are crazy when they are not and just told they have depression and given antidepressant medication which tends to cause more problems from sideeffects.  The other big problem when you go to many allopathic doctors complaining of CFS from EBV/CMV virus is that they tell you that it is virual and nothing can be done which is not at all true.  I suggest that you read the following "America Exhausted:Breakthrough treatments of fatigue and fibromyalgia" by Dr. Edward J. Conley, O.D. he is the founder/medical director of the fatigue and fibromyalgia clinic of Michigan.  I found his website and he sent me this book for free.  There phone number is 810-230-8677 and there email is ***@****. Unfortunately, I have not gone to his clinic because althought I thought at one point that I had CFS I believe now that I have multiple sclerosis.  Since your CFS is vitally triggered you may benefit from Kutapression injection, zovirax, ampligen or some other antiviral drug.

Good Luck to you.

Dawn
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Avatar universal

Hi ! I'm glad you are here. I strongly suggest finding a physician who knows about viruses & immune dysfunction. You might want to consider googling "Co-Cure's Good Doctor List" and you will find a link to their website and be able to search for a physican in your area who frequently diagnoses and treats patients with Chronic Fatigue Syndrome.

I hope that you will also check out MedHelp's fibromyalgia / CFS board. I am the Community Leader in the forum and post there regularly. In early October, we will have a physician posting on our board and answering questions for all of our members.
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472714 tn?1207524648
Find another doctor. I mean that. It sounds like you are going through what all of us here are going through. There are two viruses that cause Mono, Epstein- barr and Cytomegalovirus. These are both part of the herpes family and stay in your body for life once you have come in contact with them. I don't know much about CMV, but I have had EBV for two years. I had a bout of mono and it made me very sick. I was told it is now in it's chronic phase which can last for years. You need to find a doctor who actually recognizes that this is a possibility and that you are suffering real symptoms. Some doctors do not believe that EBV or CMV can make you that sick. My doctor tried to pass me off with the old "you are depressed and anxious and here is a pill" routine. Find a doctor who is knowledgable about this virus and what it can do to your body. I have the brain fog, cognitive problems, allot of dizziness and the terrible fatigue as well. It has gotten better. But the cognitive problems are still with me. I can't listen to more than one person talk at a time or my brain feels like it will explode. I talk funny and write backwards, and I have many other symptoms. My doctor can't offer any treatment except for the symptoms themselves and I won't take the anti-depressants because they make me more faitgued. But what you are experiencing is a real illness and if you didn't get enough rest and care during the acute phase, that may be why you are still sick. There is a woman on the these boards called "plateletgal" who is more knowledgable about these viruses and has her own website. Do a search and see if you can find her. I have read many of her posts and she is a wealth of information. good luck!
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Avatar universal
Sorry, that word is c.r.a.p., not any of the other four letter word(s)...!
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