The 12th Invest in ME Research Conference June, 2017, Part 2
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What tests should I request/8 wk sore throat

Discussion in 'General ME/CFS Discussion' started by Cshell, Nov 9, 2015.

  1. Cshell

    Cshell

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    For 8 weeks I have been in one of my worst flares ever and could use some advice. My CFS started 19 years ago with EBV and CMV at the same time after a very stressful and physically demanding time during pregnancy. I have had shingles twice and constantly have a sore throat. For 8 weeks, I have had a pimple like blister on my throat that comes and goes. I've been hoarse. My nose and chest have been congested. I have had a squeezing in my chest that has led the Dr to order a chest CT and echo. I don't know if this is all related or several different things because I've been around several different sick people in the family. The throat pain has been constant though for 8 weeks.

    I have had 2 rounds of amoxicillin and a z pack. After the first round of Amoxicillin I felt much better for a few days, the second round didn't do much. With the z pack I also had 40 mg of steroids for 5 days so I felt like a new person and I was up and moving a lot. A few days after that 5 day course, I wound up at the ER with horrible squeezing in my chest. I'm pretty sure it was coming off of steroids quickly because they just gave me one pill of a long acting steroid and it relieved the intense chest squeezing but I suppose it could have been lung inflammation of some kind. I feel like the antibiotics have helped, but they have never swabbed my throat and the sore throat is back. He already gave me an RX for acyclovir 800 mg that I have been taking sporadically. It upsets my stomach quite a bit.

    Also, I know I am overdoing it, but I have several things that I have needed to take care of when I should be in bed. Last night I felt hideous again (emotional, cry easily, feel irritated like everything hurts and muscle tension, even my face feels tight and frozen).

    I have an appointment with my GP for next Wed and I was thinking about asking the Dr to order some extra labs. Am I out of line to ask for them to run some tests to figure out this throat? Like maybe at least swab for strep? And if not, what should I ask for? I have good insurance so I don't know why they haven't done anything like that after all this time.

    I also saw an ENT last week but my throat was the best it had been. The day I saw him the blister was gone. He said all he saw were lichen planus (autoimmune) so my GP is referring me away from here to a Rheumatologist. I went to a local one years ago and all I got was bloodwork that said speckled pattern ANA and more specific lupus test was negative so he considered it a dead end.

    The only labs were done at the ER. Do they make sense with the constant illness for 8 weeks? I never have fevers and usually my temp is 97. I also have Von Willebrand's (clotting problem) so they ran coagulation too. Does anyone have any idea where to go from here? 8 weeks of constant acute illness on top of the relentless fatigue that I deal with daily. I don't know if there is an undiagnosed Addison's disease or immune problem or if this is just a worn down CFS flare with catching everything that goes around. Does anyone have any suggestions?


    Bloodwork:
    WBC 8.0
    RBC 4.49
    hgb 13.2
    HCT 40.5
    Platelet 342
    MCV 90.2
    MCH 29.4
    MCHC 32.6
    RDW 13.7
    MPV 9.3
    Segmented Neutrophils 60.1
    Lymphocytes 29.4
    Monocyte 8.9
    Eosinophil 1.1
    Lymph absolute 2.4
    Mono absolute 0.7
    Eos absolute 0.1
    Basophil absolute 0.0
    Basophil 0.5
    Total neutrophil absolute 4.808
    Coagulation PT 10.2
    Coagulation. INR 0.96 * (only one with a star so I assume this was the only value out of normal range)
    TSH 1.967
    Monospot negative
     
    Last edited: Nov 9, 2015
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    You might want to break up that HUGE 1st paragraph, lots of us have trouble reading online, never mind such a big block of text.

    GG
     
    minkeygirl likes this.
  3. Cshell

    Cshell

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    Sorry, and thanks. I'll fix it. I'm having trouble even making sense right now.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    When I get a sore throat its viral. I up my Famvir and within days I was better. I have EBV cmv and hhv6. I always felt it was my EBV.
     
    merylg, Cshell, Tammy and 2 others like this.
  5. Cshell

    Cshell

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  6. minkeygirl

    minkeygirl But I Look So Good.

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    I take 1000 mgs but I also take 450 mgs Valcyte. I may ask my doc if I can go up to 1500
     
    Cshell likes this.
  7. Clerner

    Clerner Senior Member

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    @minkeygirl Are you able to tolerate valcyte? Side effects? What dose are you up to now? Thanks!
     
  8. LornaRaindrops

    LornaRaindrops

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    I don't have any advice other than support for you, I understand how horrible it is to have a sore throat regularly. Mines really sore at the moment and the glands around my neck are swollen and tender. It flares up like this for me when I've done too much and my body isn't doing too well with managing itself, so perhaps as you mentioned you have had a lot to do when you should be in bed, it might be a reaction? My M.E came on from EBV too, I used to get sore throats permanently in the beginning with that. Sending you well wishes xx.
     
  9. Cshell

    Cshell

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    @LornaRaindrops I got it to go away by taking 2 Tagamets 4 times a day. It came back a few weeks later and the Tagamet worked again. I took a chance with it out of desperation when I remembered that I used it to get rid of shingles several years ago.
     

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