Tonsil Removal for EBV-related CFS?

Discussion in 'Fibromyalgia Main Forum' started by aryiella, May 28, 2009.

  1. aryiella

    aryiella New Member

    Hello all,

    I haven't posted for a long time...unfortunately I can't say I've improved, but have gotten worse. I had to stop working in Jan 09. Please see my profile for my full history. Anyways, I couldn't find anything in the archives relating to this topic so I'm throwing it out there...

    My CFS is caused (I believe) by chronic EBV based on blood tests. I think there are other factors too (low adrenal function) and maybe some other things, but I think the EBV is a major one. As a quick background, besides the EBV (I got Mono when I was 18, now 34), when I was a kid I had chronic ear infections. I had tubes in my ears and was on antibiotics a lot. As I got older I had chronic sinus/throat infections which I still do get however less frequently. About a month ago my tonsils got infected with an odd bugger - enterobacteria, something normally found in the gut. Went to see an ENT and was put on a course of Cipro which seemed to get rid of it. Well, a couple weeks later and it seems to have flared up again. I had a follow up with my ENT today and he said if that bacteria is down in the tonsils deep, the antibiotic won't get to it. I inquired about getting my tonsils removed because I had seen a study article about EBV and tonsils:

    I am now trying to decide if at age 34, could removing my tonsils possibly help me feel better. Even if it's only a 25% chance, I'd be willing to try at this point. My Mom's concern is that the tonsils are "there for a reason" and could taking them out allow the EBV to become worse somehow? I got the impression from that study that the EBV "liked" the tonsils and it helped them sustain chronic infection (correct me if I am misinterpreting).

    So, I guess which is it...are the tonsils controlling the EBV because the virus congregates there, or are they making it worse by giving it a breeding ground it likes? My ENT doesn't know about this, I already asked.

    Any input/experiences are greatly appreciated especially if you've had EBV-related CFS then had your tonsils removed as an adult and how you felt afterwards, good or bad.

    Thank you!

    [This Message was Edited on 05/28/2009]
  2. aryiella

    aryiella New Member

    Bumping hoping someone will see this who has had this done. I really want to hear from someone in the same situation before I make a final decision about this.

    By the way, I spoke to my ENT over the phone again today. He told me tonsils serve no purpose after the age of 5. I don't know if that is true or not. Now my regular MD told me that the tonsils still do "filter" bacteria/etc from what we breathe in, eat, and from sinus discharge but still if all they do is collect this junk and never get rid of it and it continues to cause infection, how is that helping anything?!?! Needless to say she thought that possible benefits would outweigh risks for me.

    Thanks for reading!
  3. aryiella

    aryiella New Member

    Thank you Glen for sharing your input.

    I have definitely not made my mind up yet. I deliberately watched a tonsillectomy video so I knew exactly how rough it really is. However, if it could help somehow, I am willing to go for it. I still need to gather more info before making a final decision. If I get it done, I will definitely share the experience with the group.

  4. thecatswhiskers

    thecatswhiskers New Member

    Hi Holly,

    I've been in exactly the position you describe and had mine out. I'll post a lengthier reply soon giving my experience, but give me a few days-week as I've had so much going on this week I wouldn't know where to begin!!! Just need some recouperation time, but I'll come back to you on it :eek:)

    In the meantime, have you heard of laser tonsillectomy? I had mine done in a few treatments under local anaesthetic, but you can also have a laser tonsillectomy under general. Within the laser approach though there's even different methods, some harsher than others.

    BTW. I live in the UK, and had mine done at age 34 (5 yrs ago).

    Be back .........

  5. aryiella

    aryiella New Member

    Thanks so much catwhiskers...

    I look forward to hearing your experience.

    My Dr said he would use a laser to remove them under general. He would remove the entire thing not just "resurface" them, which I've heard of too.

    I can't make up my mind and this dang enterobacteria is making me even sicker-feeling than I am normally. I can't live like this.

  6. thecatswhiskers

    thecatswhiskers New Member

    Hi Holly!

    Yep, as I said before I had my tonsils removed in 3 treatments under local anesthetic. hard to explain the procedure, but it isn't just resurfacing, it is actual removal. Here's a link to where I had the op, which sort of exlains the procedure;

    I chose this method as a. Less bleeding risk and pain (post op) and also the fact I could have it under local, and not have a general (react badly to drugs).

    There is also a laser operation whereby the surgeon uses a laser in stead of a knife, but although that cuts down the bleeding risk slightly, it does mothing for the pain. My type of op was different to that op. It's the post op pain and bleeding that is MUCH worse when you have a tonsillectomy as an adult.

    I had it done as at the time I was suffering CONSTANT low-grade tonsillitis after EBV some 10+ years previously. I could never pick up, as the least episode of 'overdoing' it created not only a worsening of my M.E., but also a much worsening of my throat and tonsil problems. Was being dragged down constantly by it. I used to get earache and always had a horse, husky voice and coughing fits that eminated in my throat too. I was approved for a normal knife-type tonsillectomy via the NHS (I live in England), but for m at that time, the risks and the inmpact they would have on my M.E. were too great for me to take. That's why I looked into a laser type one. I was mainly bedbound with my M.E at the time, and definitely housebound apart from a trip out (to a hospital appointment!) once every 6 months.

    Anyway ........ I spaced the treatments out, to give myself time to recover between each, and did the 3 about 6-8 mths apart, depending how my M.E. was at the time. Healing was remarkably good, and I managed the pain just on Difflam gargle and paracetamol, so it really wasn't bad.

    It took a while after (wasn't instant), but having them removed has definitely given my body less infectious 'load' which has impacted positively on my overall health as a result. My throat is still a weak point for me, and probably always will be, as the tonsils only make up a proportion of the lymphoid tissue in your throat. I still have low grade pharyngitis most of the time, but to me it's a MAJOR relief my tonsills are gone and I don't regret the ops for a millisecond. I do still get gland pain, but it's not constant, like it was previous.

    Would I say the same if I'd have the 'traditional' style op, either by laser or knife ....... well then I'm not sure the outcome I've had, and the help it's given me would have been worth it, as I know I was just too ill to deal with that degree of trauma (post op pain and healing) at that time. If I was healthier with the M.E., and say at a level where I was somewhat functional I would have had it done by whatever method as my tonsils were that troublesome for me.

    It's a nasty operation for adults to have, post op painwise, so it definitely needs careful consideration prior. Another aspect that influenced my decision was the fact the only painkiller I can tolerate os paracetamol, so I needed a method whereby I knew the pain could be controlled by just that. It was easily in my case.

    Hope that helps!

    Take care, and 'good luck' in whatever decision you make :eek:)
    [This Message was Edited on 06/02/2009]
  7. aryiella

    aryiella New Member

    Hi thecatswhiskers,

    Thank you for taking the time to share with me your experience. I don't think I could do the 3 procedures spaced out like you did...I'd prob go with the 1 shot deal, but I still haven't decided, although I really don't want to have it done UNLESS I knew it was going to help, which is anyone's guess. I am trying to use a waterpik with some olive leaf extract and hydrogen peroxide in it to irrigate my tonsils with (very gently). This is in addition to my regular supplement regimen. I'm not bedridden but very low energy, frequent feelings of inflammation (immune system response), and constant fibro pain. I'm in the process of applying for disability.

    How is your CFS/ME condition now in general?

    Thanks again.

  8. thecatswhiskers

    thecatswhiskers New Member

    I'd say I was 10% better than I was before the op. I do have other infections etc going on, not just EBV tho, so if EBV/ chronic tonsillitis was your only problem, then the result might be far more dramatic.

    So hard to tell, we're all so different! All I'd suggest is try and find the lowest trauma method you can, then the gains you have will be a bonus.

    BTW. My opinion is that in adulthood tonsils hold infection in, rather than repel it so do more harm than good in quite a few cases.

    [This Message was Edited on 06/03/2009]
  9. aryiella

    aryiella New Member

    Wow, only 10% improvement, I'm sorry to hear that.

    I'm actually trying some natural methods first. Surgery is going to be a last ditch effort for me I think.

    Thanks again,
  10. thecatswhiskers

    thecatswhiskers New Member

    Yep, but I was very sick to start with, and as I say I do have quite a bit of other stuff going on that needs curing .... like a jigsaw!

    I must say I tried every natural under the sun, and every method of applying and taking it, but the bacteria were so deeply embedded in mine. You're right tho, I think surgery should be the last ditch ....... try everything else 1st.

    Grapefruit seed extract is a good gargle solution (few drops in water) .... hold over the area of your tonsils a bit longer whilst gargling. Olive leaf extract good to take internally. Echinacea I found useless personally!

    [This Message was Edited on 06/03/2009]
  11. aryiella

    aryiella New Member

    Yes, I know I have other stuff going on too, which is why I'm thinking this would not be the "cure-all" of my condition. Thanks for the gargle suggestions. I'm going to attack those buggers directly for now!

    Take care,
  12. thecatswhiskers

    thecatswhiskers New Member

    Great minds think alike Holly, that's what I used to call them too.

    Good luck with the direct action on the buggers, make them fearful of you! Don't forget warm salt water in the mix too, not to be underestimated for it's healing, soothing and inflammatory action.

  13. lpc

    lpc New Member

    Hi Holly!
    Did you have your tonsils out? I am 34 and dealing with the same problem and was curious.
    I hope you're feeling better.
  14. aryiella

    aryiella New Member

    No, I never did Laura. I chickened out. I was afraid the recovery would be too brutal considering my state of health and age.

  15. happycfs

    happycfs Member

    Anytime that we "invisible disease" survivors have a surgery, we are risking sooooo much more than the average person. I once had the exact same impression that you have, that taking your tonsils out might possibly help. I went ahead with the surgery, and my recovery time was not a week or two as the Drs all said -- it was more like six months! But then, I could say that it was several years, because it ended up sending me into a worse physical state than I was in before. It did nothing for my sore throat either.

    Having my tonsils out (I had it in my twenties, I am in my early thirties now too) was the worst thing I could have done. Everything is worse now. Stay far far FFAAARRRR away from any surgery that you possibly can. Please, please, please!

    I am so sorry that you are feeling so terribly bad by the way. I have been housebound for many years now. I sincerely do understand your journey. Thank goodness you are not alone. Stay strong my friend. We are with you.

    PS: My EBV was very high before the surgery, and it is still very high now, years later. Have you looked into Valtrex? Some people say that it has helped them after six months or so, to lower their EBV. [This Message was Edited on 06/21/2012]
  16. aryiella

    aryiella New Member

    jaminhealth - could you tell me how much you take daily of those two supplements? I'm glad you've had so much success. What percent would you say you are of "normal" today?

    happycfs - thanks for the warning, I had made my mind up I wasn't going to do it, because I suspected something like what you went through would happen. That's just too traumatic of a procedure for people like us.

    I personally did a 6 month course of Valtrex years ago and my numbers came down some, but I felt no better so I said forget it. Obviously that isn't the only thing contributing to my fatigue.
  17. aryiella

    aryiella New Member

    Even though I'm definitely not getting them out, I still wonder if having tonsils is good or bad. It sounds like the answer can be both. So they make T-cells. Not sure what function they perform. I remember from that rituximab(sp?) study that EBV hides in B cells. I wonder if EBV does hang out in tonsils, but then maybe if you remove them they just find other places to hide.

    I was one of those kids that had lots of ear infections as a youngster too (had tubes in my ears, etc). Have had allergies from as long as I can remember, mainly hay fever but others as well. My immune system was always on hyper-alert.

    Sometimes my tonsils will get those stones in them. Luckily not too often anymore.

    Oh well, not touching my tonsils that's for sure. Maybe will try the OLE and Grapeseed.
  18. lpc

    lpc New Member

    Thank you for getting back to me. How much Olive Leaf Extract/Grape Seed Ex do you take daily? Is it sold in a pill form? I can't wait to try.

    Thanks a million!!