Getting Worse, Not Better

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Jul 3, 2009.

  1. TeaBisqit

    TeaBisqit Member

    I really don't know what's up with my immune system, but I'm feeling worse instead of better. It's like, the Armor helped the thyroid, but the rest of me is going downhill. The right gland in my neck hurts and it's been hurting for awhile. I can't shake the fever or fatigue at all. And I've been getting the chills pretty bad, even when it's been in the 80's out.

    Prime example of people not understanding how ill I am. My neighbor asked me to help her with her new pc. And I had said I would try for today. But I was too sick and couldn't go. So I told this to my friend Carole. A half hour later, Carole calls me up and says she and her daughter want to take me out to dinner and over to their place afterward. And I'm like so ill, I can barely walk to the bathroom and here she is thinking I'm suddenly okay after I just told her I couldn't even help my neighbor out. I just don't get how people don't understand. If I'm too ill to walk four feet to my neighbor's door, I'm certainly too ill for a restaurant and socializing.

    So I ended up sleeping, but the sleep hasn't helped much and I'll be going back to sleep. I just wish I knew how to make this better. I'm so tired of feeling worse all the time. And my doctor has no real clue on how to help me. And once again, I've missed out on more life experiences because I'm too sick. I really did want to out with my friends and spend time with them. But I'm really just way too sick.
  2. gapsych

    gapsych New Member

    Are these new symptoms or a worsening of your usual symptoms?

    If someone can take you to the emergtency room to check you out maybe they can make a recommendation for an endocrinologist if you are not already seeing one. A fever if you have had it long enough and it is high enough should be looked into.

    Have you had a change in meds. recently? Supplements? Change in diet? Possibly you should call your doctor and see what he/she says.

    The fact that you have a history of thyroid problems concerns me.

    I am not a doctor, and it could be nothing, but sometimes it is better to err on the side of caution.

    Take care.


    [This Message was Edited on 07/03/2009]
  3. TeaBisqit

    TeaBisqit Member

    I had the ultrasound on the thyroid, they told me at that time that it was enlarged, but nothing bad was seen in it.

    I was told my white cell count was a bit off, like my body was fighting an infection. They thought it was due to the Hashimoto's, but I don't think so, not entirely since the thyroid is better, it's the gland that hurts.

    My doc is trying to send me for an open MRI once we get the insurance straightened out on it.

    Also, I'm going to make a dental appointment and see if there's an infection under an old crown that might be doing this. It seems to be bugging me and it's on the same side as that gland that hurts. I'll let them pull it if need be. Sometimes one bad tooth can really mess with your system.

    As far as Lupus goes, I just don't know. The only time I got the Lupus rash was when they put me on Zithromax. Then I had it going across my face. Haven't had it since, though.
  4. DavidJ.

    DavidJ. New Member


    i am sorry to hear that . yes, i also had a tooth removed because it hurt and i thought that it would be the cause for my fatigue. it helped a little bit but not really.
    did your doc check your blood for herpes viruses ( epstein barr etc..) ?
  5. TeaBisqit

    TeaBisqit Member

    I have HHV6 and EBV. I've always thought HHV6 was giving me a problem, but I don't think it's the cause of all this.
  6. DavidJ.

    DavidJ. New Member

    uhm, you dont think that hhv6 can cause this? at first i "only" had hhv6 and this was the most devastating thing i had ever experienced in my life. and by the way, there are a lot of studies which say that hhv 6 could be the cause for ms , so dont underestimate this virus.
  7. TeaBisqit

    TeaBisqit Member

    It's not that I don't think it's doing alot of bad, it's more like, I'm not sure it's the sole cause. Plus, there is no doctor in my area that believes it does anything or will do anything about it. So I'm kind of stuck. They act like it's nothing if you dare to mention it. Just like they act like EBV is nothing. Why they don't think that having high viral titers to both viruses isn't a cause of feeling horrible, I have no clue. They just ignore them.
  8. bigmama2

    bigmama2 New Member

    sorry to hear you are getting worse.

    i would like to second the post of empty2void. if you could get the diagnos tech adrenal saliva test panel. do a search on diagnos tech and read about this test. you can order it thru a dr neville at clymer healing center in quakertown pa (do a search) neville is a naturopath dr. w specialty in cfs which he believes one of the main causes is adrenal fatigue. the test is about $160 and includes a consult w dr neville. all done by phone. you dont have to go to quakertown. if you cant afford the test- tell dr neville - and maybe he will be able to help you just based on your symptoms.

    dr nevilles main supplement is an adrenal glandular supp called miladregen. (do search) you could order on line from various sites. this supp has helped me. and i was very sick (semi beddridden at my worst). but the supp takes time to work. the supps come in various size bottles- the cheapest is - ummm i forget maybe like $20 or so.

    tea- i cant remember- have you tried testing and treatment for adrenal fatigue. (dont bother w a reg endo on this.) (well, one should see an endo to test for addisons and cushings- if results are normal- then it stops there.)

    by the way- you prob already know this- but just in case you dont--- the adrenals make a hormone called aldosterone- which if low can give people symptoms that sound alot like yours- feeling faint when you are vertical- feel better when llying down.

    good luck.
    please write back and tell me if you have in the past looked into adrenal problems, and what happened.

  9. jasminetee

    jasminetee Member

    You know I understand because I'm in the same boat. I keep getting worse too. It's very hard to deal with people not understanding. I don't have the energy for it anymore. Come into Chat sometime. We have a lot of fun in there. That's my social life now. :)

    Hugs and I hope you start seeing better days.

  10. ladybugmandy

    ladybugmandy Member

    also getting worse, tired of fighting now

    for me, i think the HHV 6a is just out of control because too many years went by before treatment

    valcyte has stopped working

    mom says she will sell her condo if i want to try to go somewhere and do foscarnet, but then i won't be able to afford the maintenance treatments so no point in putting her through that

  11. romalaw

    romalaw Member

    Kelly, I would like to second what you said about being on hydrocortisone. I have been on 5 mg on millipred (prednisilone) a day for about seven years. It literally gave me back a life. It is not a cure by any means , but it does allow me to function both cognitively and energy wise. It has helped me more than anything I've taken. It allows me to get out of bed every morning.

    I just returned from a cross country flight to see relatives, something that would have been impossible in the early years of my illness. I was gone for six days, arriving at one airport and leaving from another 4 hours away. Of course, I didn't do it alone, my husband was with me. I'm not saying it wasn't difficult and at times very stressful and I did have to plan it very carefully. I've learned to double up on the millipred during times that will require a lot from me and then I taper back down.

    Sue, now that you're not seeing Lerner, maybe you could try it. It seems to me that for those of us that it helps, it is as close to a "cure" as we can get.
  12. DavidJ.

    DavidJ. New Member

    hhv6 is of yourse not the sole cause for this if you also have ebv. ebv is just as horrible as hhv6 . if you got them both then it makes it even worse.
    dont listen to these doctors they just dont know. but you and i know what it feels like.
    what about antivirals? do you take some?

    and sue: sorry to hear that...
  13. TeaBisqit

    TeaBisqit Member

    Any of the docs I've been to have been afraid of giving those drugs. They seem afraid of not only the side effects, but they seem scared of making it worse. And this seems to be the main theme I've gotten from all of them over the years about our entire illness. They're scared to treat us because they don't know the real cause and they don't want to make us worse.

    I think my fevers, chills, and inflamed nerves are all caused by these viruses. I get shingles like pain in different body parts. I'm always freezing lately, even in 80 degree weather. And it seems it gets reactivated at different times of the year.
  14. bigmama2

    bigmama2 New Member

    if you have a second- please tell me if you have been tested for adrenal problems. and if you tried any treatment - and results. or is this an area of treatment that you are not interested in?

    about the viruses- i have huge ebv titers, and also borderline high hhv6. i was on valtrex and it did help! if you cant get valtrex- maybe try a natural anti viral supp(s) from health food store or online. for ex- l-lysine, or whats the other one called- let me look it up and i will edit this to add name. i think even garlic- raw (but must be crushed)or in supplement for has antiviral properties. EDIT - ok i just looked it up- did a search for natural anti virals-- l-lysine, garlic, vit c, zinc!, and OLIVE LEAF EXTRACT. if you try any of these- prob best to start low, and go slow. with our sensitive systems. and i dont know if these supps produce a "detox/herx/die off" type of crappy feeling.

    what about the simplified methylation protocol?

    i am just trying to help you with possibilities. i know very well the suffering this illness causes. the main things that have helped me are - rest- adrenal supps- antivirals- and methylation.

    gentle hugs to all-
    [This Message was Edited on 07/05/2009]
    [This Message was Edited on 07/05/2009]
  15. TeaBisqit

    TeaBisqit Member

    She did test the adrenals and gave me the usual BS answer that it's "in normal range". Yeah, right. However, my white cell count is showing that I'm fighting something off. We initially thought this was just from Hashi's, but the thyroid has gotten better, the fever, however, has not and I can't shake it. She's now swearing I must have a pituitary tumor because my Prolactin level is high. But Prolactin can be high from Hashi's. So I won't know what's up with that until they let me do the open MRI.

    Right now, my main symptoms are fever, swollen right gland in my neck, dizziness, chills, fatigue. Like there's an infection somewhere and we don't know where. I'll get the one tooth looked into. It's an old, old crown, long since had a root canal in it. There could be an infection with it, it's very old. However, if that's not the cause, then I don't know what is.
  16. DavidJ.

    DavidJ. New Member

    yeah, l-lysine is good. you can get it cheap at ebay, just type in lysine powder. 1 kilo for 16 dollars i think...

    i also take vit.c in high doses, but i read somewhere that zinc "feeds" the viruses? i dont know , i dont take it anymore....
  17. gapsych

    gapsych New Member

    You will have to excuse me but I am throughly confused.

    What kind of doctor are you seeing? When is your next appointment?

    Are you not wanting to try things because they aren't the cure. Right now there is no cure for what we have, only symptom relief.

    In my opinion it sounds like you need a through workup by your PCP and then possible referrals.

    Hope you feel better.

  18. DavidJ.

    DavidJ. New Member

    isnt ebv the cause for hashimoto? i read about a lot of people who first had ebv and then developed hashimoto. however, maybe you could find a doc who prescribes antivirals...
  19. TeaBisqit

    TeaBisqit Member

    I'm not on anything right now except the thyroid med. And fairly regular Prilosec or Pepcid depending on how bad the acid reflux is.

    And that's another interesting thing. I read that acid reflux medication can cause a rise in Prolactin, the hormone the doc is worried about in me.

    EBV and Hasi's, haven't a clue. I think I had a thyroid problem since I was a kid and it wasn't diagnosed. My mother took me to the doc for low body temperature, which could also have been Lyme, but I think thyroid, too. Plus that millions of times I went to the doc in my teens complaining of throat pain over there and no one realized it was thyroid.

    After I had EBV, that's when the right gland in my neck started to bug me. And the doc never knew what to do for it. They gave me tons of antibiotics back then, but it never got rid of it since it's obviously viral.

    Teeth are a hard thing to pin down. But I'll make the appointment and see what's going on. One tooth infection can make you feel rotten all over. It's worth looking into it.
  20. MsE

    MsE New Member

    I, too, feel like I'm getting worse, not better. In fact, I know I am. And at 74, I don't have that many more years to live and I resent, deeply resent, having to spend them as an invalid. After years of being patient, of practicing acceptance of "what is," I am becoming angry. MsE