Feeling like a Dish rag plus many other Miseries!!!!

Discussion in 'Fibromyalgia Main Forum' started by greatgran2, Dec 31, 2012.

  1. greatgran2

    greatgran2 Member

    Hi all haven't been here in awhile..After all these yrs you would think I would be use to this illness but since Thanksgiving I have been feeling like a dish rag plus the pain, sinus, vertigo and on and on.. Thought once upon a time this would end someday but now realize I don't think it ever will at least for me.

    I was dx with Chronic Lyme even with abx treatment only some improvement for awhile now back as bad as ever.

    Just venting , Tks..
  2. Mikie

    Mikie Moderator

    There are peptide injections for Lyme undergoing studies right now. They have identified what causes the immune system to produce the inflammatory response to Lyme. Instead of Oxford Univ., I think this one is being produced by a pharma.

    I got sick at Thanksgiving with, first, a cold; second, sinusitis; and finally, a stomach bug. None of us who has gotten this stomach thing has been able to shake it. I'll be just fine and feel a wave of nausea, dizzyness and diarrhea hitting me out of the blue. It's just the gift which keeps on giving.

    Keep an eye out for this new peptide serum. I hope it can help you and I hope you are feeling better.

    Love, Mikie
  3. greatgran2

    greatgran2 Member

    Thanks, I am not familiar with peptide injec. and I haven't found a doctor that knows much about Lyme , especially Chronic Lyme. Most say abx is not the answer when it becomes chronic.. I did see a LLMD once but out of pocked pay was too much...especially when I was told sometimes treatment helps sometimes it doesn't..

    What doctor would I go to that is familiar with the peptide injec. isn't that what you had??

    I have been sick since Thanksgiving and as you say there was a time I thought I was snapping out of it then within minutes I change from bad to worse.. The Holidays have been miserable as I had all the children, grans and greats here for a week Thanksgiving, just getting over that then Christmas , only a few here but that was to many as the last ones just left.. I an totally sick exhausted and don't think I will ever be able to get out of bed.. This is horrible to say but Thank God and Greyhound they are gone..

    Sure this is TMI but been awhile ... Hope you snap out of this soon.. hugs
  4. greatgran2

    greatgran2 Member

    Tks Jam, no I don't have a mansion, far from it.. They all wanted to come for my 70th bd ... So what could I say.. I only see my oldest daughter and her daughter, my gran, once a yr so when they come they stay.. Just to much and to many and to long.. for me that is.

    I think the Chronic Lyme is really getting to me and no help from meds and no good doc so trying to rest and hope some energy , and all the head / ear stuff will go..

    Great hearing from you... wish I lived near an acupuncturist.. think I would give it a try.. Yep still of grapeseed but not faithful like I should be..
  5. greatgran2

    greatgran2 Member

    Tks for the bd wishes and the research .. I have tried Grapefruit , like the grapeseed better.. I do need to up my dose and be faithful taking it daily but when I was on so many meds it was hard to take everything.

    My treatment began with oral Doxy but due to esphog. problems had to stop and take meds to help my stomach ..Then back on abx and the same problems so went to a LLMD ( out of pocket pay) and she put me on lots of supplements and a gluten, sugar, dairy free diet which I followed the best I could.

    The doc wanted to lower the inflammation and build my immune system before abx was used again.. Saw some slight improvement as I had got to the point of being bedridden .. With this combo I was able to function some then the abx was started again same espogh problems.. At this time I was able to have some good days so decided to stick with the supplements / vitamins and let the abx go..The LLMD told me when lyme becomes chronic it is so hard to put in remission , there is never a cure , which this is debatable .. but for me abx doesn't seem to be the answer.. I no longer see the LLMD as it was too costly if there was a cure I would have found the money but just didn't see the point..

    It was during Thanksgiving that I began having the horrible symptoms that put me back to bed but with all going on maybe that is why.. So going to try to rest and see what happens.. I think in chronic lyme that IV abx are needed and the doc I was seeing doesn't do them .. I am no doc but 5 yrs of heavy duty abx I think would kill me so going to try to rest, get back on my diet and all supplements and pray...Guess this is to much info.. All I know this is a horrible disease and there are times you think you can't live so trying to learn to live with it... Too the anxiety / depression never left still doing that which I did find out from the LLMD this is part of Lyme...

    Tks again and hugs

  6. MicheleK

    MicheleK Member

    Hi Greatgran,

    First of all I want to say that what you have written is NOT too much information! We all write about what we go through and that information helps others understand our particular circumstance more clearly. Without all the information we wouldn't have a clue as to how to comfort one another and compare notes so to speak.

    I do not have Lymes, but I do have a couple of close friends and family that have chronic Lymes. They seem to go through the same kind of symptoms, exhaustion, relapses, and other issues that I do with ME/CFS/FM/POTS. It's brutal!

    Really resting sometimes, deeply, is the best thing we can do. I've been in a deep rest since the last week of September. I miss my grandson, children, and friends/family, but sometimes you get to a deeper level of cellular exhaustion and have to take really restrictive measures to get back to what you thought was a not so great level of health, till you got struck with the deeper level of Hades!

    Thank you for sharing your experience. I hope you will continue to do so. We all learn from one another and in doing so grow more empathy in our hearts.

    Hugs, MicheleK
  7. greatgran2

    greatgran2 Member

    Thank you for your kind words and info.. What are your friends treatment for Chronic Lyme, if you know, would love to hear how others handle this.. I just feel abx has not been the answer for me even though I am still on a low dose..

    Hope you get to feeling better with the rest.. With the holidays and the children, grans and great has really taken its toll and I am to baby sit the 8 and 10 yr olds till school re-opens and then after school.. I honestly don't see how I can do this..

    Tks again and let me know how you are doing..
  8. jole

    jole Member

    I don't have Lyme as far as I know, but definitely understand your total exhaustion from family. Mine were here at Thanksgiving, and my kids can tell when I've reached my limit usually before I can! One DD will take me by the hand and lead me to my bedroom.....lol. I rest approx. 20-30 minutes and come back out to join them. I usually go rest 3 times a day. By the time they leave after 2 days, I spend the next week recouperating going between bed and recliner.

    I'm amazed and impressed that you can babysit, and I don't know how you do it either, bless your heart! I hope you're doing much better once you have a chance to get rested up, which will take awhile. Hugs....