Mono again??

Discussion in 'Fibromyalgia Main Forum' started by SICKim514, Dec 1, 2008.

  1. SICKim514

    SICKim514 New Member

    It's been a while since I last posted here, and I don't even remember what my screen name was back then. I was diagnosed with CFS back in 2004, after persistent low-grade fevers and no other possible explanation. After struggling for a couple years, I went into "remission" and felt "better." My CFS began, I believe, as a result of having mono when I was 14. I never felt the same afterwards.

    Fast-forward to now. I'm 26 and just had my 2nd child on 9/17. During my pregnancy I felt great, despite some pregnancy-related complications. Now it's a different story, and I'm not sure what to make of it. I went to my doctor because I still had swelling in my legs, and that set off a spiral of events. They determined my blood pressure is high and attempted to put me on medication for it. My BP had been running in the 150's-160's/90's. Well, the medication dropped my systolic BP down to the high 80's/low 90's, and I became extremely lightheaded and nearly fainted. I spent 2 days in the hospital getting IV fluids and getting my BP monitored. Before my hospital stay, I had bloodwork done that showed I had elevated liver enzymes. My doctor said it could either be fatty liver or mono. So prior to leaving the hospital yesterday, they ran repeat liver function tests, along with hepatitis panel, monospot, CMV, and EBV.

    I'm still feel extremely lightheaded and have this buzzing/vibrating sensation in my head. Someone mentioned it could be a viral inner ear infection, which lead me to a website about inner ear infections. On there, I read that sometimes a systemic infection such as mono can travel to the inner ear.

    So my question is this...I thought it wasn't possible to have mono more than once? However, I'm not entirely convinced I really DID have mono when I was 14. I believe they did a monospot which was positive. However, in 2004 before being diagnosed with CFS, my doctor ran bloodwork to check for EBV. Well, that was sign of active OR past infection. Isn't EBV the virus that causes mono? And isn't it true that once you've had EBV, you will always test positive for a past infection? So is it possible that maybe I had another mono-like virus when I was 14 and diagnosed with mono? I'm just so confused about all of this. I feel terrible. I've been sick with what I thought was a cold for over a week now. My throat has been so sore (strep test was negative) and I feel so run down. I'm so lightheaded and I can't stand feeling like this. I'm sorry to ask so many questions, but I'm just searching for someone who can help me.
  2. wendysj

    wendysj New Member


    I had mono too. Then about a year later, I started having lots of issues. Low grade fevers everyday, severe fatigue, swollen lymph nodes, sore throats and sinus issues, etc. The doctors ran my blood work and saw the mono virus. The Mayo Clinic told me that once you get Mono, it shows up in your blood forever... You just are symptomatic anymore. EBV doesn't cause mono... mono is a virus on it's own.

    I was diagnosed with CFS by the Mayo Clinic in 2005. The fever and other symptoms lasted for a solid year before they went away. Now they only come back when I have a flare.

    Good luck and Congratulations on your new baby!

  3. Timaca

    Timaca New Member

    I never remember having mono at all, but apparently I have reactivated mono now (based on very high IgG antibody titers). I also apparently have reactivated HHV-6 and Cpn (chlamydia pneumonia).

    Get tested for mono and if the IgG titers are quite high (in the hundreds) then try to get treated. Also test for other possible reactivated pathogens.

    Best, Timaca
  4. ChuckNBerkeley

    ChuckNBerkeley New Member

    "EBV doesn't cause mono... mono is a virus on it's own."

    From Wikipedia

    Mononucleosis has a set of common symptoms that are usually presented in the individual with the disease.

    Infectious mononucleosis occurs with infection by the Epstein-Barr virus.[7] (A similar condition can be caused by cytomegalovirus. Because of this, some sources say that infectious mononucleosis is "usually caused by the Epstein-Barr virus",[8]. Other sources reserve a different term, "cytomegalovirus mononucleosis", for mononucleosis caused by cytomegalovirus.[9]. Some sources state that infectious mononucleosis can also be caused by toxoplasmosis or viral hepatitis.[10])

  5. Lichu3

    Lichu3 New Member

    Mononucleosis refers to symptoms and not a specific virus. The most common virus FOUND in people with mononucleosis is EBV so many people and healthcare workers call EBV-associated mononucleosis "mono" shorthand although it is not entirely accurate. Another cause of mononucleosis is HHV-6, discussed on this board often -- documented in non-CFS mononucleosis cases and in some CFS cases that researchers are seeing.

    The most common CAUSE of mononuclosis overall........suprisingly, unknown. i.e. many people with mononucleosis symptoms but tests showing no known cause. However, most people get well within weeks/months so not much research focused on it recently. Many studies from 1960s, 1970s,1980s.

    BUT.....recent interest again percolating with regard to treating acute EBV mononucleosis again given the length of time people sick. Hopefully it will shed light for those of us sick for YEARS and not just months. Current trial underway sponsored by NIH as well.

  6. tkearn5000

    tkearn5000 Member

    I also have elevated ebv levels, along with lyme and hhv6. The doc says that the ebv is a reactivated infection. This means that I was infected at one time, and the latent infection has reactivated due to my weakend immunuty.

    As stated in one of the other posts, once you have EBV, the antibodies are always present in your blood. If the infection reactivates, a rise in those antibodies can result.

    I also wanted to point out that one can be infected with EBV without getting mono. Oftemtimes it causes only cold-like symptoms. Apperently over 80% of the population is infected by EBV by the time they are in their twenties. A much lower percentage, however, gets full blown mono. This explains why people who never had mono can have high EBV levels. And as stated above, EBV is not the only infection to cause mono symptoms.
    [This Message was Edited on 12/02/2008]
  7. SICKim514

    SICKim514 New Member

    I wanted to thank you all for your insight on this. I made an appt with my doctor for tomorrow, because I don't think I can wait until my original appt next tuesday. I feel absolutely terrible. The worst part about it is this buzzing/vibrating sensation in my head that will not go away. I hope he has some answers for me.
  8. wendysj

    wendysj New Member

    Wow... I was absolutely wrong on that. I thought I remember my doctor telling me something different. I hate messing things up! Thanks to everyone who set me straight.

  9. mindblower

    mindblower New Member

    Lichu3 said, "...The most common CAUSE of mononuclosis known cause."

    Interesting insight. In light of ME/CFS, even more interesting and considering:

    "Mononucleosis does not make monocytes proliferate, but it causes widespread activation of B and T cells. We have previously shown (Cashman et al, Cell 1990) that activation of mononuclear cells is accompanied by ~4-fold increase in surface PrPC, potentially making these cells better hosts for prion infection."

    "Baraniuk JN, Casado B, Maibach H, Clauw DJ, Pannell LK, Hess S S
    A Chronic Fatigue Syndrome - related proteome in human cerebrospinal fluid.
    BMC Neurol. 2005; detected an identical set of central nervous system, innate immune and amyloidogenic proteins[prion] in cerebrospinal fluids from two independent cohorts of subjects with overlapping CFS, PGI and fibromyalgia."

    And I've read Dr Baraniuk has come to dismiss the viral cause theory for ME/CFS yet prions like nervous tissue like those usual suspects and are like viruses though they are not.

    Is ME/CFS some sort of chronic prion disease process, as opposed to virus caused?

    [This Message was Edited on 12/03/2008]
  10. ChuckNBerkeley

    ChuckNBerkeley New Member

    "Is ME/CFS some sort of chronic prion disease process, as opposed to virus caused? "

    Is there any evidence for Lymphadenopathy in prion disease(s)?
  11. ChuckNBerkeley

    ChuckNBerkeley New Member

    Decided to do a "quick and dirty" further search. This article is wonderful!
    Infectious Mononucleosis
    Article Last Updated: Oct 17, 2008

    Lymphadenopathy is always bilateral and symmetrical in all patients, including those presenting with generalized adenopathy."

    My Lymphadenopathy (which waxes and wanes more-or-less with my energy level) is almost exclusively on the left side! Started on February 8, 1991 in the evening, following a 7 day head cold.

    Which PROBABLY means my CFS wasn't reactivated EBV.
  12. ladybugmandy

    ladybugmandy Member

    my CFS started with EBV and i also have very slight lymph adenopathy and aching - but almost always on my left side. i just figured that the virus is more present in my right lymph nodes for some reason.
  13. Lichu3

    Lichu3 New Member

    1. Never say never and never say always.

    2. Diseases don't read textbooks.

    (i.e. yes, presenting symptoms should be taken into account in diagnosis but anything that says "never" or "always" are usually wrong; few things are pathognomonic - you see it = 100% that disease all the time - need to consider whole picture)

    Prion diseases (mad cow, the cannibal disease "kuru", Creutzfeldt-Jacob) as far as known present as raidly progressive neurological disease -- tremors, seizures, dementia, etc. -- leading to death. Not much mention of lymph node enlargement.
  14. mindblower

    mindblower New Member

    "Prion diseases (mad cow, the cannibal disease "kuru", Creutzfeldt-Jacob) as far as known present as rapidly progressive neurological disease -- tremors, seizures, dementia, etc. -- leading to death. Not much mention of lymph node enlargement."

    Yes and not to overstate the issue, I meant wiki's general science or inclusive use of "prion", which there are these fast progressing grim reapers of course and the potential their examples evoke for a wider variety of exogenous types, perhaps some not fast or lethal yet a problem like some viruses can be. But I was thinking endogenous disease too as I've seen Ph.Ds using prion and misfolded(toxic) protein diseases interchangeably.

    "Proteopathy" is probably the more suitable term and this captures both prion as well as other diseases with misfolded proteins where a few are known to have lymph node enlargement occur.

    "Something" seems to have our ME/CFS brain's sympathetic/hypervigilance/stress response system upregulated and stuck there. Whatever gives, this can tweak immune response, activate viruses, etc., confuse the matters of simplicity and probability--especially what comes first, second and on down the line.

    What's the "something" to ME/CFS?

    MB[This Message was Edited on 12/05/2008]