Could This Really Be The Treatment?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Oct 9, 2010.

  1. greatgran

    greatgran Member

    I have a friend that was dx cfids, later lyme. She has been bed ridden and in a wheelchair on and off for months. She had been on antibiotics orally for good while. Later her LLMD put her on IV antibiotics, now after one treatment she is out dancing and feeling great.

    Don't mean to be negative but I find this hard to believe. Just 2 weeks ago she was so weak she could barely speak. Would one treatment have this great impact?If so would it work for CFIDS?

    I find this hard to believe but happy for her.. Two days after the treatment she was feeling great so she says.. I do question ...could this happen this fast ?? or maybe she is coming out of a crash and will hit bottom again??

  2. TigerLilea

    TigerLilea Active Member

    Would this work for CFIDS? No. She obviously didn't have CFS and was misdiagnosed. Could it work this fast for Lyme? I don't know the answer to that one. You don't say how long she has been sick for. I know that when I had a massive tooth infection (two teeth actually) and had been sick for almost a year, after only three days of oral antibiotics and I felt great. So it is very possible that your friend is feeling much better now that the IV antibiotics are killing off the bacteria from the lyme.
  3. greatgran

    greatgran Member

    Tiger I thing she said she has been sick for about 6 yrs. Was dx with lyme about 2 yrs ago.

    I hope its for real.. I have got to get to a doc because antibiotics help me to feel better at first but about the 4th day I get so sick. Not sure if its med sensitive or reactions. Well, two I know were reactions ..

  4. gapsych

    gapsych New Member

    An antibiotic also has some anti inflammatory properties. So if inflammation is involved with whatever she has, that could be the reason she is feeling better.

    I had a cortisol shot about two years ago for Bursitis of the hip and it literally stopped the pain for three days. Even though I was a bit more energetic without the pain, I wasn't exactly feeling energetic enough to go dancing in the street".

    The rheumatologist I had at the time said she had seen this in a lot of FM patients and thought it might have to do with inflammation. But she had also seen this happen in patients where inflammation does not show up on any tests. I only got a half dosage of cortisol as it really makes me feel jittery and irritable. The half dose did not do this and cleared up the Bursitis. It is not a long term treatment unless absolutely necessary.

    If she does indeed have CFS, unfortunately for her, you are probably correct that she is going to crash again.

    Take care.


    LEFTYGG Member

    i cant remember when i last took an antibiotic. last year i said to my gp that my body feels like i need a big dose of antibiotic. she said they dont treat lyme disease with antibiotics. i was dumbfounded since ive read that here many times.

    i lost respect for her that day. love gail

    ps i was tested for lyme years ago it came back negative. i dont even know what test they used. it was an infectious disease dr.[This Message was Edited on 10/09/2010]
  6. karynwolfe

    karynwolfe New Member

    Speaking on M.E. (or whatever you want to call the actual disease process), it's been shown that the illness changes our gene expression, and genes just don't reverse back to normal expression overnight! Long story short, these genes help perpetuate our body's symptoms because of how it's had to re-adapt for our own survival over the years. It would take several months, at least, for any M.E. treatment to really have an effect. This is one reason why all these "miracle cures" for M.E. can be readily dismissed: Even if a treatment is going to work, it takes TIME, just by the very nature of the disease.

    So I agree that this was a case of regular "CFS," i.e., "we don't know what's wrong with you so here's a CFS misdiagnosis."

    Lyme usually takes a few months of treatment before improvement is seen, because it replicates slowly. The IV antibiotics could have been the extra "oomph" that she needed. If she has Lyme disease, she probably also has co-infections (most do; they're the things that travel WITH the Lyme bacteria) that actually do react VERY quickly to antibiotics because they replicate quicker than Lyme. Thus they're also quicker to be eradicated, and improvement can be seen immediately.

    And gg, you really do need to search out an LLMD and put this water under the bridge already! Instead of constantly having to wonder whether or not Lyme treatment will help you. Just find an LLMD, tell him your symptoms, and try treatment already. You have nothing to lose and everything to gain, and this has been a lot of time when you could have already potentially been on the way to a real treatment instead of beating around the bush. You deserve better than this.
  7. karynwolfe

    karynwolfe New Member

    Couldn't have said it any better than JAM

    xo Karyn
  8. greatgran

    greatgran Member

    I appreciate all your input. I would love to find a LLMD close by as I can't travel hundreds of miles. My doctor of course says no lyme .. The treatment my friend is taking the cost is over twenty thousand, no insurance accepted. No way could I ever afford that.

    I do have an appointment with a regular doc and going to see if we can start with Igenex (sp) lab
    lyme test. I am so allergic to all antibiotics I don't know what course this new doc will take or even take me seriously. For the past 10 yrs have been to so many docs and no answers and no results.

    Yes, its true I feel I am dong nothing for myself but not ready for another disappointment or bad med reaction..

    So many times I have been to sick to get to a doc but hoping this one will at least listen and work with me. I probably have CFIDS and no lyme but the past four years I seem to be getting worse as well as older..

    God Bless and hugs,
  9. greatgran

    greatgran Member

    Wanted to update everyone on my friend and her IV treatments. After the second day of IV treatments she was up going to a wedding and feeling great.. Now this is day 9 and she is shopping, mowing the lawn and packing to move..Get this 2 wks ago she was in a wheelchair.

    She does her IV's at home.. The first week she had to go to the clinic everyday to get the IV tube checked. Now she goes once a week.. The reason for the move is they sold their house and moving near the clinic as when she finishes her treatment she wants to be able to help out there.

    Guess, I am being negative but this all seems to good to be true.. She she says she feels great..

  10. Nanie46

    Nanie46 Moderator


    It is very possible that when your friend was on oral antibiotics for a good while, her bacterial load was gradually reduced, even if she did not have improvement at that time.

    She may have actually felt worse during that time because she was probably herxing from the die off of bacteria.

    Like karyn said, the IV was enough to push her over the edge and create improvement.

    Another possibility...the IV med pushed the Lyme into cyst form, creating improvement.

    She could relapse when the IV med is stopped, because Lyme must be attacked in several ways to kill the different forms.

    But each time you take a med, you can kill more bacteria and in the end it all adds up.

    I have read other accounts on of people having drastic improvement quickly, so I would believe your friend.

    My LLMD was in a wheelchair for 5 years and now is walking just fine and practicing medicine again.

    It is likely that her treatment will not be short even though she had vast improvement on an IV med.

    I became gradually worse as I got older also....just diagnosed with FM then.

    Two very important lessons I can tell you for sure:

    NEVER rely on a Lyme test...mine were negative too...along with a ton of other people on

    Do your own research so that you know more than your Dr does.....99% of Dr's are not Lyme literate, but they think they are.

    As you already know, I think it is likely that you DO have lyme and coinfections, so I hope you will not wait until you are even more sick.

    There must be a LLMD in your state on the list, whom you can get could truely mean the difference between life and death.

  11. greatgran

    greatgran Member

    I have tried to find a LLMD near me ..I have search for a LLMD not far away. For some reason I have no success in locating doctors. I do know you sent me a couple of names and if you have the time would you help me once again. I live near Winston-Salem, NC you would think there would be one at Wake Forest but all I found was an infectious disease doc. Also Roanoke, VA isn't to far. There should be one near Chappell Hill, NC, Charlotte or even Duke..

    I am seeing a new doc, here, and going to see if she what her input is. I probably won't on my first visit but will mention to her a LLMD or at least the Igenex lab test.

  12. greatgran

    greatgran Member

    I think my friend will be on IV's for 52 days.. everyday and has to ck into the clinic once a week to see if any damage is being done etc.
  13. karynwolfe

    karynwolfe New Member


    You don't search Lymenet for a doctor. You go here

    which is the "Seeking a Doctor" forum, and tell the people you are looking for a doctor around Winston/Salem, NY.

    Someone will private message you with more information if they know of an LLMD near you, as just like ProHealth, no doctor names are allowed. Lyme diseaes is ENDEMIC in that area so you're very likley to find someone close-ish. I know there are a bunch of other people from NY looking for an LLMD as well.

    My last infectious disease doctor thought my LLMD was taking advantage of me!! My LLMD is the ONLY doctor who has been able to help me, out of 10 doctors this past year alone, but he's just taking advantage of me??? ((rolls eyes)) Makes me furious!! My family almost believed her and almost refused to take me to my LLMD! I have no other way as I cannot drive, and if they HAD refused, I'd still be slowly dying right now. Unbelieavable!

    Try to avoid giving out the LLMD's names, even to other doctors, if you can. The insurance companies try to go after them and shut them down, because their treatments are "unconventional" even though there is tons and tons and TONS of valid research studies that prove chronic cases of infection (Lyme ad otherwise) that REQUIRE long term antibiotic therapy.
  14. Nanie46

    Nanie46 Moderator


    greatgran is talking about NC. I have the LLMD list for NC and VA. I sent it to her via email recently.

    I will look at it again and see who are the closest LLMD's to her.

  15. karynwolfe

    karynwolfe New Member

    Oh wow, I looked at that four times and could have sworn it said New York! Haha

    That is good.

    For anyone else who reads this forum post, then, that's how you find an LLMD if you need one

  16. Nanie46

    Nanie46 Moderator


    Can we set up a time to meet in a private chat?

    Best time for me is probably Wed 10/13 around 10-11:30 am or sometime Thursday.

    I'll check this site in the morning to see if/when we can chat....privately.

  17. greatgran

    greatgran Member

    Wed. is good.. Now tell me how to do a private chat and any time is good .. 10 maybe as I am anxious to chat. anytime is good for me. You let me know how and when..

    Thanks so much..
  18. Nanie46

    Nanie46 Moderator


    I will be in the fibromyalgia chat room Wed at 10 is the info about how to have a private chat:

    Private Chat Window

    Chatters are able to open a private window to any other chatter in the same channel to talk one on one, unless admin disabled this feature. Private Chat is monitored too and recorded in message log.

    •There is a user list at the right of the chat box.

    •Click any username you like, the background color of the chosen username will change and a mini menu popup with "private" button in it. (Click "All Users" at top to release the status to talk only to particular person.)

    •Click the "private" button, then a private window is activated between you and the recipient.

    •If you choose a user name but no such "private" option comes out, probably you've chosen the ID of yourself. Or you can double click a username to activate a private window with him or her.

    •Click the "minimize" button at the top menu of private window to shrink it to a single bar, or click the "maximize" button to extend it to original size.

    •Click the top bar of private window to activate different private chat window.

    •Click the top bar of private window and drag, you can move it around.

    •Click the right-top "close" button to close this private chat window.
    Even if the one you're private chatting with left the current room, maybe he was in room-list page, maybe he entered another room, as long as he didn't log out the whole chat, you can still private chat with him. When he logged out and got offline, you'll be notified that he logged out, you can't send further message to him since then, but the private window remains and you can still read your conversation.

    User can change setting in the option panel to refuse to accept private window in case he or she want to be left alone.

  19. greatgran

    greatgran Member

    Will be there and have figures out the private chat... tks.
  20. greatgran

    greatgran Member

    Never received your email..Waiting for a call from the office we talked about, also emailed them..
    Will keep you posted and thanks