Pain here too, or still

Discussion in 'Lyme Disease Archives' started by morningsonshine, Jun 19, 2006.

  1. morningsonshine

    morningsonshine New Member

    Do others experience this much pain while treating lymes??
    I see someone else just posted on pain too.

    I've been taking ceftin, on the 9th i quit because of the muscle pain i was having, almost like charlie horse cramps, deep in the muscles, all over, specially hands, and feet.
    Back of legs.
    That weekend i started having bathroom problems, i posted about that, and on monday (last monday) the nurse told me to go off my ABX for a week.

    Well i've still been in pain this whole week, Saturday was excrusiation, i was up all night, even my face muscle hurt, plus my skin was burning, like beening in way too hot water.

    What's up? I've tried calling my dr. office today, but have gotten no answers back yet.

    i do not feel ready to start back on ABX, how long can a person be off??

    Any response would be welcome?
  2. ajp

    ajp New Member

    Morningsonshine,

    Hi, sorry to hear you are feeling bad and are in pain. I was going to post about this myself. I am having so much pain and fatigue. My hands especially have been bothered.

    I talked to my doctor last week about this week. He said this is all normal, I am herxing and he does not want me to cut back on the abx. I see him on Wednesday.

    I am having a very hard time dealing with all of this. I thought I was in pain before, that was nothing compared to this.

    I don't really have any answers for you but just wanted to let you know that I understand. Take care.

    Love Mindy
  3. morningsonshine

    morningsonshine New Member

    Dose he say why he dosen't want you to cut back??
    This much pain can't be good for us.
    I still haven't heard back from the nurse yet.
    Are you on any pain killers?
    I am not.
    Is it like charlie horse pain for you too,? i also have burning pain too.

    I've had pain before i started treatment, but not this much intensity and for so long. It's not just tight muscles, i always have that.

    Thanks for replying, sorry you are having a tuff time too,
  4. minimonkey

    minimonkey New Member

    I'll do my best to answer this -- (gosh, I feel almost like an oldtimer with Lyme here -- compared to the other support board I go to, where I am still very much a newbie!)

    Yes, it is common for pain to get a lot worse before it gets better with Lyme treatment. It is a herx reaction, as the above poster mentioned -- a reaction to the die-off. There are differing schools of thought about whether or not to "pulse" (stop and re-start) antibiotics -- some docs think it is actually better and safer to do that, others say no.... my NP is fine with me stopping if the herx gets unbearable -- I have had to do that twice in my 5 months of treatment so far -- my pain and also my neuro symptoms shot through the roof when I first started treatment. Herxes can be serious sometimes -- people have experienced severe reactions like seizures and paralysis, so PLEASE stay in touch with your doc if the sx get bad.

    My NP is great about handling my pain management, too -- I would have suffered a lot more the first few months without pain relief... now, I don't need it nearly as much or as often.

    My personal rule of thumb for pulsing abx (my NP is fine with this) is --- when the herx gets unbearable, stop the abx until you feel better, then re-start them gradually. I've found that I can tolerate them much better this way.

    ****As for the pain in the hands and feet**** this is very often a symptom of Bartonella, a common co-infection with Lyme. I'd suggest asking your LLMD about that!

    Magnesium helps some folks with the muscle cramping issue -- actually, any of the electrolytes can cause cramping if they are out of balance.

    My NP prescribed a muscle relaxant for me, as well -- it does help some, but not enough to get rid of a really bad spasm.... that has only come with getting better....

  5. ajp

    ajp New Member

    Hi,

    My LLMD didn't want me to cut back on the Ceftin (I am on 1000mg), said that would be going backwards. I do see him tomorrow and am going to talk to him about maybe pulsing the abx. I also am supposed to be starting another one, but can't remember what one.

    I am feeling very discouraged, but I read the other reply...so there is hope. It is just so hard dealing with the fatigue and pain. Somedays I am just too tired to even talk. But I will discuss all this with him tomorrow and let you know what he says.

    I do take pain meds, Vicodin. However my regular MD prescribed them, my LLMD does not prescribe pain meds...don't know why, but will ask him that also. Truthfully the pain meds, only kind of take the edge off. but right now I can't imagine not having them.

    I do have the burning pain, so terrible at times. I have seen a slight improvement on that in the last five weeks that I have been on the abx. Most of my pain now is aching or sharp stabbing pain. I have always had pain in my hands, one of my first symptoms, along with severe hip pain, which has come back when I am herxing.

    Take care..keep in touch.

    Love Mindy
  6. victoria

    victoria New Member

    that my son sees also had no problem with him backing off for a while... in fact, he went off for 4 weeks to give his system a rest, since he seemed to be not responding. A little different situation as he was not in a huge herx, but I think minimonkey's & Mindy's responses are good ones.

    Lyme takes about 28 days to replicate, so that is to our benefit in being able to pulse abx. And actually, the protocol for my son has almost always been 3 weeks on, one week off abx to let the immune system rest.

    Dr. Burrascano also mentions that on the DVD from the Lyme conference in April.

    Did your doctor get back to you?

    all the best,
    Victoria
  7. morningsonshine

    morningsonshine New Member

    Thank you guys so much for being here for me. This morning was tuff, but i'm feeling a little bit better this afternoon.

    My dr. called me yesterday, and he wants me back on the ABX He said i could start at 1000 but wants me to keep trying for the 2000 mg.

    The stronger the better to kill the bugs, oh yeah! He said that in the lab you can kill this stuff in the test tube, but in the body you have to have enough in your system to penitrate into the tissue where the bugs are.

    I told him, "i'm not a test tube!" Test tubes don't hurt, and have families to take care of.

    He said he knows it's tuff, but it's like chemo for cancer.
    and he's in my corner.

    Words are fine, but i'm just dreading going back on.

    Minimonkey, thank you for your input here on this board, i have been over to the lymenet, but find it hard to keep up on different boards, and like being here on prohealth.
    I do take magnesium, but it's not very much, i bought some ZMA from here but haven't tried it yet.

    Mindy, sounds like your really going thur it too, lets keep each other encouraged and compare notes.

    victoria, I sure hope your son shows improvement soon. Thanks for your knowledgabe input.
    My dr. talked about being at the lymes conference, but seems very conserative about treatment, and basically just wants to hit it hard with ABX, but i feel the body needs help and support along with killing the lymes.

    But this is the only Dr. i've even found willing to treat me at all, and i have to drive 3 and 1/2 hours to get to him.


  8. kellyann

    kellyann New Member

    I experience a great deal of pain while treating Lyme. My Dr. says that the increase in pain means the treatment is working. I don't know.

    I'd go slow about going back on your antibiotics. The die-off reaction caused by your antibiotics is what makes you so sore. That is what my Dr. told me anyway.

    I pray it gets easier for you real soon!


    Take Care!
    Kellyann
  9. minimonkey

    minimonkey New Member

    I'm glad to be able to share some of the knowledge I've gained... I spend a lot of my free time reading about Lyme.

    Hip pain is one of the pesky symptoms that I am still having -- it isn't nearly as bad as it used to be ( I was walking with a cane for a while) but it still comes and goes -- I think joint pain is generally one of the last symptoms to resolve.

    I know what you mean about vicodin barely taking the edge off the pain -- that is exactly where I was just a couple of months ago. Now, I can sometimes go without any pain relief at all -- my pain is steadily decreasing, though it really, really flares during a herx, even those aren't nearly as bad as the first few were.
  10. kellyann

    kellyann New Member

    I pray you ladies are feeling better today. Please post and let us know how you are.
    So far I have not had a bad reaction to the Mepron, YAY!!!!!

    Minimonkey,
    I read your bio - how fun it must be to be an abstract painter! We own a graphic business and I have done some mural type paintings before that were a lot of fun. How long have you been sick? I've been sick about 8 years or so now.
    Take Care and I pray you all are having a reprieve from your illness!
    Kellyann
  11. morningsonshine

    morningsonshine New Member

    i have a hang-over today, must have been a heck of a party because i don't even remember it!!

    I do remember having to pee all night, and when i finally got to sleep, mosquitos woke me back up at about 5:00!
    YIPPPEEEEE!

    I thought when i quit partying 13 years ago i was done with the hang overs! boy was i wrong!!

    Actually my pain level has gone done quit abit, it's tolerable, Praise the Lord!

    But still not up to much real functioning, did start ABX back today. I've had two cat naps today.

    Kelly ann how are your sores, we've bumped into each other before haven't we, i recognize your pic.? Finally went out and looked at my horses today, and kissed a nose.

    Mindy how are you doing today??



    [This Message was Edited on 06/21/2006]
  12. kellyann

    kellyann New Member

    I don't think I've met you before. I live in the state of Georgia. About an hour west of Atlanta, in a really rural area. I do own horses too. I have racking horse mare who is 17 hands tall!She is beautiful! And two bay quarter horses mares and one tiny minature paint stallion. I love my horses and do so wish I could do more with them.

    My cysts are feeling better today, I hope they are going down or my husband is going to drag me to the doctor soon.

    I am so glad to hear you are feeling better today! That is a real blessing from the Lord!

    Take Care of yourself!
    Kellyann
  13. pumpkinpatch

    pumpkinpatch New Member

    I hope your doctors theory about increase in pain means treatment is working because I'm hurting bad. Today I went to Health Food Store and asked clerk what she recommends for pain. It so happens her mother has fibro and I bought the three things she recommended.

    Wish I had pain meds to make me a little more comfortable. LLMD doesn't give out any pain prx.

    And yes I'm tolerating the mepron, almost 2 weeks. Maybe the pain from head to toe is herxing.

    Cindy
  14. minimonkey

    minimonkey New Member

    Kelly -- to answer your question, I have been sick at least since 1988, but more likely since birth (I have symptoms dating back to early childhood) -- I insisted my mom get tested, and she was also CDC positive -- she has been sick since before I was born. I think I picked up the babs in 1988 when I had an engorged tick and a rash -- my health took a huge downturn at that point.

    Yes, I love being a painter.

    I'm a horsewoman, too! I've never had my own (live in the city) but have been riding most of my life. I'm sorry that you ladies aren't feeling much up to riding right now -- I hope that changes really soon!

    I've heard of folks having a nasty herx from Mepron!
  15. kellyann

    kellyann New Member

    Do you still go to the FFC in Denver? If so they dang sure should be giving you pain medicine. My doctor says that I need to let my body heal right now and I don't need to worry or feel bad about having to use pain meds. So she has no problem writing my prescriptions. Your body is under so much stress right now with the die off and herxing and so much pain. You really need pain medicine in order to give your body a rest and start to heal. Why doesn't your doctor give you pain medicine? That just makes no sense! I just don't understand why your doctor would just let you suffer like that!

    Kellyann
  16. kellyann

    kellyann New Member

    It is very encouraging to hear that you are feeling better now. It gives me hope that I can get well too! I love hear about how well you are doing!

    Speaking of horses, my silly horses got lose this morning, as someone left the gate open. So we were out looking for them at the crack of dawn this morning. My daughter found them down the street. Thank goodness we live down a gravel road, haha! It does make me sad to look outside and see my horses and not be able to ride. Most days I am too sick to even go out and brush them. Maybe soon, I pray. Just brushing and bathing them is good excercise.

    Kellyann
  17. pumpkinpatch

    pumpkinpatch New Member

    I haven't talked to the FFC doctor since starting with the LLMD. The FFC doctor did give me oxyctin but I half and doesn't really help that much. My muscles and body feels so inflammed. So tight and stiff. Is that how you feel? I had pain before but not this intense.
  18. kellyann

    kellyann New Member

    My muscles are sore over my whole body and my joints ache and burn and are hot to the touch. My knees, hands, ankles,and elbows swell up. So yeah, I guess I feel inflamed too. Sometimes the best thing is plain old asprin. No oxycotin does not take the pain away, but it does take the edge off some.

    Without it I would be bedridden. You have to take it at regularly in order for it to work correctly. Not just when you are in the worst of pain, or wait until you are in dyre straits. Do you know what I mean? I have extended release tablets that maintain the medicine in my system, plus tablets for break through pain.

    I wish you could convince your doctor to give you medicine to get you through until your body goes though the worst of the herxing from your new antibiotics. The mepron is making me herx, so it probably is you too.

    I am getting so sore. And hands and feet are going numb, are yours? Fevers? I have a heck of one right now. Didn't mean to carry on so, but I hope you feel better today, I really do!
    Kellyann
  19. pumpkinpatch

    pumpkinpatch New Member

    Really sore knees and pressure headache behind my head at upper neck. I'm going to try one of those oxy now. Whole body feels like a board and muscles hard as rock. Usually a warm bath helps me.

    Cindy
  20. laddman

    laddman New Member

    I have been treating Lyme for about 2 months. As your body eliminates the bacteria you experience herx. I am being treated by the Fibro and Fatigue center. They have me taking 8 drops of burbur detox 4 times a day. If you are feeling ill, you take it 8 times a day. It helps your body relieve the organisms that are dieing. It really does work.