Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Holy crap, I'm so sick right now.

Discussion in 'General ME/CFS Discussion' started by bspg, Jan 19, 2018.

  1. bspg

    bspg Plant Queen

    Messages:
    514
    Likes:
    1,856
    USA
    I'm one of the (lucky? unlucky?) people w/ME who still get sick. And whatever I caught recently is really kicking my ass! :cry:

    It started on Monday with a mild sore throat and increased body aches. By Tuesday I had white stuff on my tonsils and throat, ear pain, post nasal drip, increased salivation, and severe body aches.

    I went to urgent care on Wednesday and they figured it was strep so they did a rapid strep test, throat culture, and sent me home with antibiotics. Not wanting to take antibiotics I don't need (would be my 4th course in 12 months), I waited 48 hours for the throat culture to come back before starting abx.

    The rapid test and the throat culture both came back negative so I assume this is viral and thus have just been suffering through this hell with saline gargles, tea, soup, ibuprofen + acetaminophen, elderberry tincture, and cough drops.

    My throat has now developed 3 well-defined ulcers (on my soft palate) that are extremely painful. I have to be loaded up on acetaminophen and ibuprofen at all times or I can't swallow and am constantly wincing in pain. My ears are hurting more now too and this morning I coughed up the nastiest crap I've ever seen (though it seems it was only this morning as I'm no longer coughing).

    Has anyone experienced this before? Anyone have tips/recommendations for self-care? It looks to me like it may be Coxsackie virus (due to the ulcers) but I don't know for sure. All I know is I'm absolutely miserable and desperate for this to pass! :aghhh:
     
    Last edited: Jan 19, 2018
  2. bspg

    bspg Plant Queen

    Messages:
    514
    Likes:
    1,856
    USA
    After catching up on @Hip's thread here, I sort of wonder if this could be an effect of the Acyclovir I've been taking for 2 months. Maybe there's a connection?
     
  3. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,981
    Likes:
    32,228
    USA
    I'm so sorry you are so sick @bspg and hope you feel better soon. There are other bacteria besides strep and was curious if you were tested for anything else? Or does it feel more like a reactivation of mono/EBV?
     
    bspg likes this.
  4. bspg

    bspg Plant Queen

    Messages:
    514
    Likes:
    1,856
    USA
    Thanks @Gingergrrl. I was not tested for anything else although I did get my EBV antibodies retested 2 weeks ago and they are all still elevated. This marks at least 3 years now that they have all been positive and elevated but I've never had mouth ulcers or anything like I'm experiencing now, so I don't think it's from the EBV.

    Stupidly, I have been drinking lots of tea and honey and using cough drops, not realizing that these are not regular foods for me (and could be MCAS triggers), so now I wonder if the mouth ulcers are from MCAS! :bang-head:

    I haven't been having any of my typical reaction symptoms though (just itchy throat and ulcers) so I'm really not sure what to think. In the meantime I've stopped all the tea, honey, and cough drops just in case but now I don't have anything to soothe my throat and I'm super miserable :cry:
     
    Gingergrrl likes this.
  5. JeanneD

    JeanneD Senior Member

    Messages:
    130
    Likes:
    371
    @bspg
    Yes, I had those symptoms many times, on and off over 8 years or so. You have my utmost sympathy! It is truly miserable.

    My GP dismissed my symptoms as imaginary once the strep test came back negative. All I could do was OTC analgesics, which as you probably already know, only do a little to relieve the pain. I usually got to the point of avoiding most solid foods and living on broths, juices, and other liquids for a day or two at the very worse of it. Straws helped because I could mostly get the liquids past the ulcers on my soft palate and my sore throat didn't mind liquids as much as solids.

    Cold liquids were easier than warm ones. The cold (ice cold) may have numbed my throat for a brief period. I'm betting you agree with me that relief even for <15 mins becomes very welcome. Saline gargles multiple times a day (with the hottest water I could stand, per a previous GP) didn't make it better, but I learned over multiple rounds, it kept the sore throat stuff from getting worse. Heat pads over the area just under my ears helped with the ear pain

    The condition seemed to be self-limiting, if that's any comfort.

    I have never had whatever it is again after I had been on Valcyte for several months. My ME-knowledgeable ID doc thought it might be a worse-than-normal case of HSV (think cold sores in the mild case) that was reactivated by the HHV6 and/or EBV. Herpesviruses are known to reactivate each other relatively easily. He suggested that my immune system couldn't handle multiple herpesviruses (or that my immune system is crap for that kind of virus) so that may explain the much worse than normal HSV symptoms.

    It's all speculation based on training and experience, so take if for what it's worth. All I can say is that it fit my experience.

    It could be coxsackii too. I did have recurrent coxsackii, but it continued after the Valcyte and Valtrex, so I figured it wasn't what was causing those symptoms. But who knows?

    If (big if) your situation is similar to mine, your acyclovir might help. If you've never been tested for HSV, HV6, or CMV, you might want to look into that. Acyclovir does very little for HHV6 and CMV.

    If the doc who prescribed your acyclovir is any good, make sure you tell him/her about these symptoms ASAP. He/she might have some insights or concerns. If he/she is inclined to dismiss you, it's probably not worth bothering unless you want to collect some of the nasty sputum in a bottle and carry it in as evidence. ;)

    Best of luck! That is a seriously shitty experience, as bad as shingles if not worse. I'd take the shingles over that any day. I'm wishing you the very best for as fast as possible recovery! :hug:

    ETA: I forgot to mention that Epsom salt baths (1-2 cups in the bathtub) can sometimes take the edge off the muscle aches.
     
    Countrygirl likes this.
  6. JeanneD

    JeanneD Senior Member

    Messages:
    130
    Likes:
    371
    FWIW, here's a link to info on herpes esophagitis. It's more common in people who are immune compromised or who have autoimmune disease, than it is in the healthy population. There's also something called herpes labialis that refers to sores in the mouth, if you're interested in researching that.
     
    Countrygirl and bspg like this.
  7. bspg

    bspg Plant Queen

    Messages:
    514
    Likes:
    1,856
    USA
    Oh my goodness, thank you so much for your reply @JeanneD! It is SO miserable and I'm so happy to know I'm not alone!! :hug:

    Yes, I 100% agree and will take any relief I can get. The saline gargles are about all I have left at this point (besides analgesics) and they definitely soothe things for a bit. I will have to try a warm compress and see if I can get longer lasting results.

    Yes, this is comforting! How long did it last for you? I've been dealing with this since Monday :cry:

    This is VERY interesting to hear, as my ME doctor mentioned the other day that if my EBV antibodies are still elevated in 2-4 weeks, we might switch to Valcyte. Have you had any bad side effects from it? It's a little intimidating. :nervous:


    I have HSV and tested positive for both IgG and IgM antibodies in July. :( I know I have HHV6 IgG antibodies but for some reason the IgM never got tested? I'd bet it's positive too though! Thankfully I had no IgG or IgM antibodies to CMV (in July, anyway).

    I've been on 3.2g of Acyclovir daily since early November. I've definitely noticed a difference but I think it'd be good to get my HHV6 redone and see about switching to Valcyte.

    :rofl::rofl::rofl: is that all we need to do to get doctors to listen to us? Bring them gross samples? :D

    I went ahead and emailed my doctor pictures of my throat before and after the ulcers. I haven't heard back from him yet but hopefully he will respond soon.


    Thank you and I've only had a small patch of shingles but yes, I would definitely take it over mouth ulcers!!!

    I did this a couple if nights ago and it was great. I need to do it again!
     
    Countrygirl likes this.
  8. bspg

    bspg Plant Queen

    Messages:
    514
    Likes:
    1,856
    USA
    Thank you and I will read this. It sounds like we have similar issues--were you ever diagnosed with an immune deficiency or autoimmune disease (if you don't mind me asking?)

    Feel free to PM if you want to answer but don't want to do it publicly.
     
    Countrygirl likes this.
  9. JeanneD

    JeanneD Senior Member

    Messages:
    130
    Likes:
    371
    I have very low CD8+ cell number, low IgM, low NK cell function, and for the past 2-3 yrs, low IgG. Once that developed I finally got an official immune dysfunction my GP (and more importantly, my insurance company) takes seriously -- CVID.
     
    Last edited: Jan 20, 2018
    Countrygirl, pattismith and bspg like this.
  10. JeanneD

    JeanneD Senior Member

    Messages:
    130
    Likes:
    371
    Not sure I want to tell you this because your situation may be different from mine.... mine lasted 2-3 weeks. Horrible, I know. Feels like you'll never survive until the end, but the good news is - you do. It ends. Hopefully your AV protocol will help you avoid getting it ever again.

    Let me start by saying my daughter had not one single side effect from Valcyte. Nothing. Like taking sugar pills. I, on the other hand, felt like I had a really bad flu for.... I don't remember, but at least a month, maybe two. My ME specialist/ID doc thought it was likely a strong immune response when my immune system started to fight again. Since my symptoms were flu-like, he encouraged me to push through because they would likely clear, which they did and at that point I was noticeably better than baseline, so I was glad I did. If I had had other symptoms that looked more like a medication rxn -- GI stuff, rashes, cognitive issues, etc --- he would have taken me off it.

    That said, many people take Valcyte without side effects, so you can't assume my experience is the norm. And even if it were, I'd do it again in a flash to get the amount of improvement I got from Valcyte.

    I remember one doc (sorry, long time ago so I don't remember who) saying it might be true that if you take another AV before the Valcyte you many be less likely to have a rough time. Maybe because you've already fought down some of the infections so your immune system doesn't react so strongly so quickly...? So you might be in luck there.

    Valcyte is not particularly dangerous if you have a responsible doc who does standard liver tests frequently (every 4-6 weeks) and takes you off or reduces your dose. Some of the horror stories are from people who took a very high "induction dose", which ME specialists don't do anymore, afaik, or whose doctors were not watching to make sure your liver can process it well. If you have a good ME specialist who has experience with Valcyte in ME and he/she thinks you should try Valcyte, I wouldn't worry much. I'm not sure I'd take Valcyte under a GP's supervision.

    Valcyte followed by Valtrex was by far the most effective treatment for me and my daughter. She is ~90%, leads a normal life on a few meds. She can't do competitive sports, or anything that requires a long, hard expenditure of energy. She does athletic activities in which she can control when she rests, though. If I needed to take Valcyte again, I would without hesitation, even if I knew I'd have it rough for a couple of months.
    IgM antibodies show up in the initial infection to handle things while the IgG's are getting "trained" to focus on the particular infection. You're unlikely to have any at this point. I'm guessing that's why they didn't test it.
    Gosh girl! You sound almost exactly like me, at least as far as infections go. Maybe AVs are the right path for you, too. I'll warn you, you don't get completely better overnight, typically.
     
    Last edited: Jan 20, 2018
    Countrygirl and bspg like this.
  11. bspg

    bspg Plant Queen

    Messages:
    514
    Likes:
    1,856
    USA
    Ugh, how awful! I hope this isn't the case for me but if it is, I guess I'll just have to live through it.

    It's so strange how we react so differently to the same drugs. I haven't had a single side effect with acyclovir which I wasn't expecting at all. I'm glad you were able to push through and gain improvements from the Valcyte. Your doctor sounds pretty awesome!

    This is wonderful! I'm so glad it worked so well for both of you. How long were you on AV's? And how long do you think you had the side effects?

    Yeah, I seem to have a real problem with herpes viruses. :( I don't know why.
     
    Countrygirl likes this.
  12. JeanneD

    JeanneD Senior Member

    Messages:
    130
    Likes:
    371
    He was. :D THE top guy in using AVs for ME. Had been at it for many years by the time we saw him. The first day we saw him (after all the testing was in) he said to my daughter, "You, I think we can get back to normal, or nearly so", then he turned to me and said, "You probably won't get back to near normal, but we can make a big improvement." He was bang on the money. Amazing guy.

    Hard to remember now. 2-3 years on Valcyte, I think, with Valtrex added in the last 6 months or so as we decreased the Valcyte. Then Valtrex alone for a while. Then we were off for 2 years, then back on for 2 years, then another cycle the same -- we could be off about 2 years. I haven't needed it since I started IVIG. My daughter still does rounds with the EBV, on and off Valtrex.

    The flu-like side effects lasted a month or two, iirc. They started about a month into Valcyte treatment. After that, I had no side effects from Valcyte, or Valtrex for that matter.

    Us, too. My uninformed theory is that it's a genetic immune abnormality that makes us less able to handle viruses, and herpes-type most of all. Part of my thinking is based on the fact that we have viral group ME in three generations, and Hodgkin's Lymphoma (an EBV-related cancer) in three generations. Herpesviruses seem to kick our butts.
     
    Last edited: Jan 20, 2018
    bspg and Countrygirl like this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,981
    Likes:
    32,228
    USA
    @bspg I wanted to reply to you earlier tonight but did not get a chance. From an MCAS perspective, can you test some of these items in isolation, vs. eliminating all of them completely, in case one or more are okay, and they were bringing you some relief? Once I got past being allergic to all food in mid 2015, I began to very slowly test food items. I found that honey was 100% safe for me at that time (which does not mean it will be for you, but it might be).

    Can you test plain hot water (without any tea in it) with just honey? If this is a safe food, you can at least drink hot water w/honey to get some relief. Back at that time, the three teas that ended up safe for me (which were all decaf) were peppermint, ginger, and rooibos. I followed the SIGHI diet and these were all listed as okay (but again they might not be for you so I would test each item separately).

    Lastly, I suspect the cough drops could be the trigger for you (if it is indeed an MCAS reaction) b/c they probably have dyes and preservatives in them plus additives you could be reacting to. And I don't mean whatsoever that you are not horribly sick w/flu, cold, EBV, etc, vs. just that you could be triggering an MCAS reaction on top of it.
     
    melo and bspg like this.

See more popular forum discussions.

Share This Page