nonna05
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posted
I'm usually in pain ,but this is crazy.
I've hardly been able to move for 2 days...
It's usually pain, fatigue,weakness etc,
BUT this is joints .large muscles,small muscles, joints, ankles, fingers, shoulder even breast.
Knee pain and low back are beyond words...
I was doing a little better , have made a few changes in protocol.
I woke up and could barely move.
Throat is cloggy/gunky and I have swollen ankles baybe more.
Is this usual or herx ??Can medicine do this?
Even some skin hurts.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Kudzuslipper
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posted
That is how I felt in May. It was my 4th month on ceftin, cipro and a flagyl pulse. I was great until then. Stopped cipro and felt better in a few days. So yes I do think, it can be drugs... Just my opinion, but I think in my case I was on it for too long. Hope you feel better.
Posts: 1728 | From USA | Registered: May 2011
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nonna05
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posted
Did it start when you started the cyst pulse., or did you start cipro and buster different times
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
It can be a herx. I had rapid-onset of body-wide pain a few weeks after starting Alinia. I was actually asking my doc for morphine. Could barely get out of a chair or walk up stairs.
I stopped all drugs for a week. Pain subsided. Then I resumed Alinia. Pain came back but not as bad. Then it subsided over a couple months.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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TF
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posted
Did you start any new meds or up any doses?
Posts: 9931 | From Maryland | Registered: Dec 2007
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nonna05
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posted
cipro a while ago, changed to leviquin, but was generic . Have used both before over the years, cipro seems to make me aggitated. upped Artiminison .Kow dose Zoloft.
Sorry about spelling and jumbled thoughts..
Had start of allergy with, generic Lev, that we re=ordered brand name and cut dose to get it.
I have a lot of trouble with generics Also put on Ketek .off Zith\
Tried to restart Tidamaz at half dose in last few days.
The only food was change of flour replacement to make not so great treat.
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
forgot Pau D'arco
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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posted
Paulie,that sounds so like how bad this is. I can almost not get to bathroom .... Getting up from sitting anywhere is excruciating.
Did they give you the morphine? I wouldn't even know who to ask, but either way I can't stay like this. Stronger Pain med. might help me move ,but something is going on. The meds I have for pain aren't even touching this.
I asked husband if any of my previous "bad" pain days seemed like this...said seems a lot worse this time.
I think my cheeks are about the only thing that aren't screeching.
Can't even think right, all day in bed couldn't even walk one stair in evening..
Really need Ideas
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I'm still not clear what specific protocol changes you've made.
If pau d'arco is in newly in the mix now, my doctor said it can treat Lyme and cause a herx.
My suggestion would be to stop all meds and then add them back in one at a time to see if you can pinpoint what might be causing the flare, then to perhaps take a reduced dose of it or hold off on something if it's too much for you to handle.
Posts: 13116 | From San Francisco | Registered: May 2006
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nonna05
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posted
Sorry about confusion ,beside the brain fog, pain is raw.
we upped Mepron to 1 1/2 , changed zith to ketek. started cipro for month then changed to lev. Generic bid, had issues so reduced to 1 a day brand name 750.
have tride for over a month to add the tidamx ., but different , difficult issues happen each time.
Bacopa and Pau D' Arco are new. starting a change over of almost all supplements to new protocol.
Not sure how electrolites are doing , not on top of it.
Tried a deep muscle lidocaine shot in left shouler. Didn't do a thing,,,, Worked for me a while ago, pain was gone for a long time.
I think I fill pressure to do what I can ,now, to feel or be coherent and moving.
People /family are coming for the Holiday's and i'd like to do more than say hi from bed.
They are staying here.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I answered you on the ketek thread... but I do think this could be a ketek herx .... it wratcheted my pain up quite a bit when I first started it. It wasn't as bad as some herxes I've had (doxy and rifampin were the worst for me), but it did send my pain levels through the roof for a couple of weeks.
I did really well overall on Ketek, though ... taken with mepron it finally cleared up most of my babs symptoms, and it also helped with joint problems a great, great deal. I took it twice -- for several months each time. Once was with bicillin and diflucan, and once with mepron for the babs.
It took me three tries before I could tolerate tindimax, but I finally was able to tolerate it the third time.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Tell your LLMD what is going on. Any change in meds can cause a big herx. I would go through cycles of what you are describing then all of a sudden see hours where there were less symptoms.
I can tell you that even now when my husband and I take our cyst buster, we hurt for the two weeks we are on it.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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nonna05
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posted
could this be a herx? would CSM CLEAR IT OUT?
I wasn't great, but I was much better 2 weeks ago.
This has had me flat 3 days,,, pains not as bad, but I haven't taken anything for 20 hours
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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posted
faithful ..hurt wasn't even the word for it, was yours extreme?
I can't even eat ,,, tried 1 smoothie and just felt yuk. I should get my meds in. at least ABX's.....I just don't think they'll stay in long
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
You have upped too many things at once. Call your LLMD and ask if you can back off the meds.
If it were ME.. I would say to myself.. what a horrible herx and back off!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nonna05
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posted
how does that affect muscles ,skin, joints, bone etc. What is best to do??///besides back off.. I just took the basics a little lower and no supps,. drop. etc. Now what's best??
Little trouble breathing . comes and goes
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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TerryK
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Member # 8552
posted
Levaquin always increases my overall body pain. My LLMD told me that is a typical side effect. Cipro is similar for me but not as bad.
Hope you feel better soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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nonna05
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posted
TuTu not meaning I won't back off,,,but what to do to move,get pain down etc..
It sounds like some stick to it and feel better Terry did they have you back down?
I haven't had trouble with Lev. before.
Could this be why DR.B say's to do weights as soon as you can??? Could it be cecause I actually did a couple outing's?
Took Adrenal and pain med yesterday and made one trip for a new sleep med to try,,,,,would have gone no where without that push....
Sleeping and rolling around in pain all day
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I have no idea what you can take or what works for you. I take Curcumin for pain. I would take ibuprofen but it eats my stomach.
So do what you can.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momlyme
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Member # 27775
posted
nonna - why do you have CSM? Do you have a mold diagnosis? My son was in similar high amounts of pain and I see this kind of pain often with mold illness.
Not saying it couldn't be a herx or something... but this is worth a try if possible:
Could you try going to a known clean hotel/motel room for a week or more. Bring nothing with you. Have someone bring you clean clothes that did not come from your house... or wash clothes at a laundromat with 1-2 cups of ammonia. Any clothes you wear into the motel room, put in plastic bags and don't fluff them around.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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nonna05
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posted
The doctor's office that orderd ultra sound of lower legs at first said nothing was going on,, in x-ray or ultra sound..then she calls me today and says mu lung doesn't fill all the way and that the knee pain is because I have cycts and so see an ortho.
Do does that mean meds weren't issue or doctor is shooting in the dark? Not LLMD .the PC..
LLMD said Mepron ,Bicillin Ketek were like the great mix, changed to Lev. the next month . Don't know why and I pushed myself to hard on my B-day so I expected some soarness .
LLMD had me on LEV about4-5ish day's by then.
Said to stop and start clyndamyiacin. Only name bramd was 75mg .so I ordered enough to do 300mg bid.
Third or 4th day working up and all you know what just blew. Literally. When I look back I was asking for help the 15th... I thought this had been a 9 day crazy period.
Just not sure what to do
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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posted
momlyme; I thought we were supposed to take binddersa
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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posted
momlyme; I thought Gail and others said you have to take binders..I'm the only sick one here.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
nonna, now that you have a good lyme doctor, take only what the doctor tells you to take.
Don't try things that people on this board are doing. Let your doctor decide what you need to take. Otherwise, you are confusing the picture.
If you are taking things the doctor did NOT tell you to take, you must inform the doctor. Otherwise, the doctor cannot properly help you. The doctor cannot figure out what is going on with you if you have added CSM or other products to your regimen on your own.
Don't try to be your own doctor.
Posts: 9931 | From Maryland | Registered: Dec 2007
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momlyme
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Member # 27775
posted
CSM is a binder specific to mold. That's why I asked.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
If you hurt that badly, you need to tell your LLMD. Let your doctor decide what to do about it. Remember that herxing isn't always bad unless you fell like you are going to die. Your doctor will want to know about this.
This needs to be addressed by your LLMD.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
A tool that can take down pain: 660 red light gadgets, like Light Energy's or Soto Works. I wave mine over hurting areas and the pain drops by several points on a 1-10 scale, I'd say.
Posts: 13116 | From San Francisco | Registered: May 2006
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nonna05
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posted
Basically passed out for 23 hours....no med etc 1 pain pill 1 potty and sunday and monday are a blur
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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