In the last 24 hours I have started having severe pain that is out of nowhere. I feel like a raw nerve...literally.
I am sore to the touch. Someone hugged me and it left me in tears because of the pain.
The tears literally felt as though someone took a razor blade down my cheeks...even the wind blowing against me HURT. Sitting down hurts, lying down hurts worse.
Every joint and muscle hurts. I feel like I can feel my blood moving in my veins because it feels like boiling water coursing through my veins.
I am miserable.
I have a call in to my doc, but doubt he will call back...he's not real swift in that dept.
He pulled me off abx because my liver enzymers were 6x the normal rate. he put me on lasix and potassium because I was having "level 3 pitting edema"...but I am still swelling and pitting...so I asked if I could increase the dosage.
I also asked about getting put on heparin for the hypercoagulation...but he said no in the past because that was a "band aid" treatment and that we just needed to attack the infection which causes the hypercoagulationn....but now that I am off abx, I am asking again.
I am getting very edgy because of the pain and dont want to bite the head off an innocent bystander...what do I do?
I am NOT suicidal at all (too much to live for!! 3 kids and prince charming as a husband!) --but the pain sure makes me wish I were dead! UGH! OUCH!
Whats a lymie to do??
JazzyGal Posted by ladylyme (Member # 9115) on :
Well Jazzygirl~
I know just how you feel, if that helps at all.... My skin hurts to touch my muscles ache and twitch so bad I can't stand to do ANYTHING! I also have 2 daughters and a hubby. They are how I make it through pain like this. How long were you on the abx? Have you tryed herbs instead of abx. Also do heat and sleep.
God bless ya I know what you are going through.
Posted by humanbeing (Member # 8572) on :
Hey Girl,
I am so sad to know you are suffering like this. Nerve pain is the most excruciating pain I have experienced with lyme without a doubt.
First please tell us the history of your illness and treatments.
I was desperately ill for the first three months of treatment. (and the two months prior).
One thing that exacerbated the nerve attacks was using ice on my neck...(I didn't know that this reves up the little buggers) Use heat instead for neck pain.
Get some pain meds if advil and tylenol arent working. Some threads on here list pain meds that work for people...I just used neurontin and ketoprophen (religiously).
Your pain is cause by the nerve inflammation in response to infection...calming your immune system takes time and patience.
Of course, the most important thing is making sure you have a good llmd, and a treatment plan that includes abx when your liver is back on track.
I have kids too and a great hubby. Make sure everybody knows that the fastest way to get the healthy mommy back is to give her love, encouragement, quiet for resting, and pleny of stress free days in which to fight this battle.
I am convinced we can not do this alone, the pain and frustration of dealing with an ignorant medical system and culture is too much.
Get hubby to swing into action with the doctor to get you some relief and fight for a good plan of action or help you find a better llmd (see on this site).
Know that it does get better. I was in your shoes a month ago and now entering my fifth month of treatment I have my life back. Not perfect, but functioning as mommy and wife again.
Best...PM me anytime if you are sad Posted by Lymetoo (Member # 743) on :
Maybe a new dr is in order? Heparin is needed if you have hypercoagulation. Although you may get relief by taking Bulouke. It is lumbrokinase, which works on the fibrinogen.
The pain of lyme has been found to be worse than post-operative pain. I agree!!!!!
Are you on any pain meds?
Posted by jazzygal (Member # 9145) on :
I was on abx for 3 months.
Doc stopped abx when liver enzymes were shoing 6x elevation...said we needed to detox.
I am doing the Nature's Sunshine 90 day challenge for detox--docs suggestion...have added Milk Thistle...and some green powder stuff to help alkalanize the body.
I guess I need some more aggressive detoxing ideas.
So this is probably lyme related?
I cant even take anything for the pain due to the liver enzymes...so I am in a real pickle here.
Doc still has not returned call...guess "severe pain" is a relative term to a doc since HE is not the one FEELING it.
I'd personally like to take a pair of pliars to his testicals and see if I can improve his level of understanding about what "severe pain" means.
I know, I know...the PAIN is clouding my judgment...but they really should call me back...this hurts.
JazzyGal
Posted by jazzygal (Member # 9145) on :
My treatment history:
Diagnosed Nov 2005
after 4-5 years of symptoms, positive Lyme titer, neg western blot, bounced from doc to doc, dx's probable MS and a whole slew of other things...
found and LLMD...he is really good, but horrible at returning calls!
Since DX in Nov I have been on 3 months of biaxin 1000mg day, 100 mg diflucan day, thyroid med.
Last monthly visit doc was suprised by the level 3 pitting edema and my liver enzymes so he stopped abx and put me on potassium and lasiz 60 mg 2 xday....I am still swelling and pitting so I asked for a increase in dosage...waiting for a call back .
I dont know why he wont presecribe heparin for us...BTW DH has it too. He told us we both had hypercoagulation issues but said we needed to treat the root cause...the infection. Yes several other of his patients in my support group say he has them on heparin...so I dont know what the deal is with that.
I have a call into my PCP to ask him to run the tests for hypercoagulation and see if he will prescribe the heparin.
The hard part in knowing I have a case of heparin in my closet from the last time I was pregnant! It is so tempting to just start taking it--but I dont want to do that without medical supervision...so hopefully my PCP will respond soon.
DH is on the upswing through prayer, the grace of God and 2+ months on abx...but doc did not run his liver enzymes last time, so I am going to request he do so this visit!!
Our LLMD has come HIGHLY reccommended and for the most part we are grateful because he does do the abx and alternative stuff too...but sometimes I get discouraged with the lack of response of phone calls when I feel like there is an urgent need.
This pain is way beyond NORMAL for me... not coping well.
JazzyGal
Posted by minimonkey (Member # 8693) on :
Oh, Jazzy -- my prayers are with you and your DH!!!
Ask your LLMD about Lyrica --- it is a great drug for nerve pain, and a CNS depressant so it calms things down. I'd also beg for serious pain relief if I were you -- no shame in that.
Hope you feel better soon!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by jazzygal: 1.So this is probably lyme related?
2.I'd personally like to take a pair of pliars to his testicals and see if I can improve his level of understanding about what "severe pain" means.
[/QB]
1. Absolutely! 2. Sounds like a plan!! Posted by AZURE WISH (Member # 804) on :
I'm sorry you are going through hell right now.
I have been there -every inch of my body was in pain...
that is how I learned where all my joints and bones and muscles was.... alll I had to do was look for the pain .. well there is another one.
Because your liver enzymes are out of control I would ask the dr. before starting anything - even natural herbs minerals etc. ...
I hope your dr calls back soon! Posted by Michelle M (Member # 7200) on :
Hi JazzyGal. Welcome. I'm so sorry you are feeling so rotten. I'm especially sorry your LLMD is non-responsive. Not the first time I've read such complaints.
Do you have a good rapport with the secretary or front office person in your LLMD's office? Is she sympathetic/friendly?
Maybe you could fax a brief note to her, i.e., 'Dear Jane, I know Dr. X is extremely busy and may not have had time to return my call, but as you know, I'm in severe pain. Could you check with him and find out what he wants me to do and give me a call back?"
Most of the girls at LLMD's offices are super and very tuned in to their docs and patients. I can count on MINE to find out what I need and convey it perfectly back and forth, usually in the same day. Also, a faxed note makes its way into your file, which is a good thing.
Don't give up. Keep persisting. With detox, your liver enzymes can level out in a week (sometimes longer). You're in the worst time of your treatment as 3 months is still pretty "new" in treatment.
Hugs to you and I'll be hoping you get some relief soon..not to mention, a call back!
Michelle
Posted by jazzygal (Member # 9145) on :
I called my docs office when I got no response and finally got to talk to him. he did prescribe me a pain med, for which I am very thankful and it took the edge off within an hour...aaaaaahhhhh RELIEF....so this will hold me over until I have my appt with him later this week.
I asked about the heparin again, and he was not even open for discussion on that issue. It would sure be a lot easier on me if he would explain his reasons...I just want to understand...if I knew there was a good medical reason I could accept that...so I am going to ask if he will explain that to me so that I can understand better...and hope I dont tick him off! I really just want to UNDERSTAND the reasons why he thinks heparin is not a good choice for our hypercoagulation issues.
Do you know if there is some kind of test that can be done to see if there is nerve damage going on?
What is a spect scan? I was briefly reading something about that yesterday?
Thanks to all for your responses...I am tolerating life much more better today not that I am able to take the edge off the pain with the meds. But I would prefer to find a solution rather than stay on pain meds for any length of time.
Thanks, JazzyGal
Posted by Laurie (Member # 159) on :
Neurontin, perhaps boosted by a bit of amitryptiline (Elavil). See if he can put you on the brand name Neurontin.
In other words, I've been there.
Posted by BostonLyme2005 (Member # 7680) on :
Hi,
I hope you feel better soon! All this talk about all these meds/herbs, etc, scares the shi* out of me
Posted by jazzygal (Member # 9145) on :
My main concern with neurontin right now is that my friend, who sees another LLMD than mine, her doc told her that neurontin will actually drive the borrelia deeper into the brain...so I am trying to find something of supporting evidence for this claim.
JazzyGal
Posted by Aniek (Member # 5374) on :
I worked with a pain management specialist to control my pain. I was working with him pre-Lyme diagnosis. He wouldn't believe the Lyme diagnosis, but he did continue to treat my pain.
I personally think it was worth sitting through his little speech on why I don't have Lyme to get the pain under control. Once we had a good pain treatment plan that worked, my LLMD took over the prescriptions.
It's just that pain specialists know more about the new medicines for treating pains than most LLMDs. I use Flexeril primarily. My pain is muscular, but it feels like bone and tendon because of referred pain.
Posted by bettyg (Member # 6147) on :
Jazzygirl, welcome to this wonderful 24/7 educational/support board.
I feel for you with the extreme pain. I called my 1 LLMD on Feb. 10; to date, he's never called me back nor emailed me w/my specific MAJOR HERX I had feb. 9.
In Ames, we have FIRST NURSE, for incidents like this. They're located at the hospital; will pull up files, and advise accordingly.
SPECT SCANS - go to TREEPATROL'S NEWBIE LINKS at the top of medical. Print his entire list of sights off; it will come in handy. Check things off as you read as there are months of reading and Tree updates this regularly too!
He has a section there on spect scans, mri, catscans, etc.
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