Now another doctor told me I have CMV

[lene54]

Yet another doctor has  told me something different.  He said I have CMV.  He said I didn't have RMSF or I would have died or had major health problems.  He believes my health problems are from CMV.  He said that when your immune system is not working well like mine, it reactives CMV.  It causes all the symptoms that I have been having.  I don't know of anything, at the time, that works well for this.  It usually makes you sick for a few weeks and leaves you with fatigue for 2 to 3 months.  However, I have been sick much longer.  Of course, I still have the titers of 1:28 for RMSF.  I have not idea, at this point, what is wrong with me or what to do to start feeling better.  My worse complaint is the awful pressure headaches every day.  Anyone have any thoughts about this?

[mkh9]

Almost everyone by adulthood has antibodies to CMV and EBV (Epstein Barr virus). Most people have no effect or reactivation of either one of these viruses. If they get reactivation it is really shown to be Human Herpes virus type 6. You can potentially reactivate if you were very immunocompromised with CMV. Do you know why you are immuno compromised?  Yes the symptoms of CMV as an adult are like having Mono. Fatigue, fever and you could develop some more serious symptoms if you really have a very low immunity. But to tell accurately the doctor would have to do paired sera. An acute IgG antibody sera taken when you are ill and one taken about a month later for IgG. He/she would have to see a four fold rise in titer over that time to say you were actively positive for CMV. Otherwise, if they only did one test it would mean nothing since almost all of us have seen the virus and developed immunity to it.

As for having a titer of 1:28 for RMSF usually to be positive it is>1:256. Unless your laboratory is different. Do you know the reference range at your lab where the blood was drawn? 90% of people develop a rash with RMSF and the terrible symptoms that were mentioned above. So, it is not likely.

I agree you should get further testing using an LLMD. See if they can find whether you have Lyme and/or its co-infections of Bartonella and Babesia etc.

Have you been tested to see if your C3 and C4 complement are low and immunoglobulin levels? Also a complete blood count? Perhaps a CD4 count to check you immune status.

mkh9

[mojogal]

I was told I had Lupus, MS and a bunch of other things. It wasn't until I went to an LLMD that I had a proper diagnoses.

[JackieCalifornia]

What kind of doc did you see most recently?  Any particular specialty?

Also, have you seen a Lyme specialist who is an ILADS member?  It's not necessary to be an ILADS member to know how to deal with Lyme, but it's a useful indicator about how the doc thinks.

When there is more than one infection (as often happens with Lyme and its little friends), the whole symptom picture can change.  

Does this doc say you do not have Lyme or anything other than CMV?  For some reason, some docs fixate on one infection and don't consider that there can be more than one.  Not saying that is what your doc is doing, but if I recall correctly, you got a documented diagnosis of RMSF.  Yes/no?

The National Institutes of Health website says this about RMSF, and the NIH is well respected:
===========================================
RMSF:

-- Symptoms usually develop about 2 to 14 days after the tick bite. They may include:

Chills, Confusion, Fever, Headache, Muscle pain, Rash (rash usually starts a few days after the fever; first appears on wrists and ankles as spots that are 1 to 5 mm in diameter, then spreads to most of the body.)

-->> About one-third of infected people do NOT get a rash. <<--

Other symptoms that may occur with this disease:

    Diarrhea, Light sensitivity, Hallucinations, Loss of appetite, Nausea, Thirst, Vomiting

-- Exams and Tests:

Tests that may be done include:

    Antibody titer by complement fixation or immunofluorescence
    Complete blood count (CBC)
    Kidney function tests
    Partial thromboplastin time (PTT)
    Prothrombin time (PT)
    Skin biopsy taken from the rash to check for R. rickettsii
    Urinalysis to check for blood or protein in the urine

-- Treatment

Treatment involves carefully removing the tick from the skin. To get rid of the infection, antibiotics such as doxycycline or tetracycline need to be taken. Pregnant women are usually prescribed chloramphenicol.

-- Outlook (Prognosis)

Treatment usually cures the infection. About 3% of people who get this disease will die.

-- Possible Complications

Brain damage, Clotting problems, Heart failure, Kidney failure, Lung failure, Meningitis, Pneumonitis (lung inflammation), Shock
===========================================

Your reasoning about the situation and your symptoms and history is well stated, and I too would be skeptical about what the doc concluded.  Multiple infections at the same time are common with Lyme, because the ticks are such little sewer-mouths..

Can you find a different doc for another opinion?  It may be the best time, money and energy you ever spent.  I would want to see a doc who also understands Lyme well, so the whole picture is considered.  I've said before that it took me 20 MDs to get a proper diagnosis of Lyme and babesia, and these were all (otherwise) good docs, well-trained and experienced.  A good Lyme doc is more likely, in my experience, to see the whole picture.

Your bio notes don't say where you are ... is Canada correct, or am I misremembering?  Hang on, and keep plowing ahead.