posted
I have a long and convoluted history as do many of you. The short story is that my original infection/bite was probably in Missouri in 1994. My severe health problems began in 2003. I was finally diagnosed in February 2009 this year with Lyme via IgeneX testing after having had diagnoses of CFS, MCS, and FM for the past 6 years. I only tested positive for ehrlichia with regards to co-infections, though I understand that may not be accurate.
Currently I am on 400mg oral doxy once a day and have been for five months. I am extremely chemically sensitive and very reactive to many medications, but I am doing well on compounded doxycycline. It caused an initial miserable die off and then I have been having subsequent die offs that occur every 3-5 weeks (averaging around every 4 weeks) which range from mild to debilitating depending on the month. The pain I experience is usually in my joints (especially hips) and muscles and is similar to a fibro flare up.
Two weeks ago, we started adding in Omnicef (Cefdinir). I started at 300 mg once daily which created horrid bone pain to the point I needed Vicodin to cope. I increased to a twice daily 300 mg dose when the pain had dropped, and of course the pain increased again. The pain is primarily in my tibia but occurs elsewhere, too. It feels like my bone marrow is trying to expand while my bone remains rigid. This isn't like the fibro pain or other die off pain I've experienced before. I have backed down to 300 mg once daily again, but the pain is just awful.
So the question after all that necessary background info is that I am trying to figure out if I am reacting to the Cefdinir or if this is die off pain. Have others of you experienced deep bone pain like this with Omnicef or other drugs?
Thanks so much.
Elizabeth
Posts: 6 | From Texas | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'd guess die-off pain. I have this too when pumping up dosing. Also, get your Vit D levels checked and make sure you've had an extensive hematological work-up. Good luck.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My Vit D levels are clinically low (and I'm not trying to do a Marshall Protocol); I am supplementing. I'm having periodic cbc and liver panels drawn, too. Thanks for sharing that you have this kind of pain, too.
Posts: 6 | From Texas | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree. It sucks but I think it may be getting to the heart of the problem which is in the marrow. I believe marrow is in the top 3 for finding in autopsies.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
i have that kind of pain in my left knee/leg too. no dr has fully understood what i mean.
i feel like the pressure in my bones makes it expand with weather changes and hurts SO bad.
my pain meds have progressed way past vicoden, that is what i started with though.
the abt. i am and have been on are diff from yours except i was on doxy for while and now on rocephin, cipro, plaquinel.
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
Thanks for the responses. I have read a lot on Lyme, but I don't remember reading anything about bone marrow-- more about cellular infiltration and affected organs (which for me is my liver that has taken the hardest hit). I'm going to have to do more reading today.
Last night after I posted, I went to bed and the pain became unbearable since I didn't have any distractions. However, the pain was 90% on the left side of my body. When something odd happens like that, it's almost certain that it's die off and not a reaction. I am going to stick with the Cefdinir but I'm going to split the capsules so I'm getting only ~150mg per dose. If my liver were functioning better, I would just work my way through the pain with Vicodin to help, but that's not the best option for me medically. My doctors prefer I drop the dose and slowly work up rather than need the painkillers. I am already on liver support herbs, too.
posted
Bone pain was one of my first symptoms - also a positive MRI for some bone marrow abnormalities..but no work up showed anything.
I am convinced it was/is related to Lyme or one of the coinfections. I'll see if I can find the link someone posted about bone marrow and co's.
I still get this and it varies in terms of intensity. I am not as scared as I used to be (thought it was cancer) and none of the zillions of docs I've seen have been even slightly concerned!
Sorry you're going thru this, it may only be consolation that others like me suffered and continue to suffer the same scary symptom. I hear it does get better over time when Lyme and cos are treated. Good luck!
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bettyg
Unregistered
posted
welcome
please have shorter paragraphs for us extremely neuro lyme folks who can not comprehend or read LONGER paragraphs like you; use my guideliens below. huge thanks
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You will find more in animal studies. Search borrelia found on autopsy.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I get this every 28-30 days. It's the only thing I can attach to the "Lyme Cycle" theory. And that's exactly what it is, deep bone pain. It was so bad one night while I was on i.v. Rocephin, that I went the ER. But it never ever like that before. I have no idea why it was so bad that night but it was so bad that I compared it to the contractions of being in labor. (sorry men, if that's too graphic)
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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posted
Pinelady-- I did find some though Googling yesterday including medical papers that found borrelia in the bone marrow through biopsies when other methods of testing were negative.
Beautiful Disaster-- Yes, labor thoughts have gone through my head. I was wanting a labor support person (a doula) to get me through the pain the other night. I have done natural childbirth, but this is pain that makes me go running for the Vicodin bottle.
I reduced the Cefdinir dose to 150mg last night but the pain was still unbearable. The pain and the amount of Vicodin I'm needing keeps going up despite the decrease in the antibiotics. I'm still concerned part of this is a reaction to the Cefdinir and am considering having the pharmacist get me a different generic. I'm going to stick it out for a few more days and see what happens.
Posts: 6 | From Texas | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Elizabeth2 I know but it is invasive and dangerous so it it not done.
I did hot tub soaks sometimes twice a
day to control the pain. Great relief. I would
get it as hot as it would go and that was not hot
enough. Finally in treatment I cannot take the
heat like I could then so I know I am better. But
it was a miserable time. And times I felt like
afterwards I could hardly get out and feared
several times I may pass out. Had my daughter
hang out with me just in case. Have to hit the
bed afterwards. Made me a real wall hugger.
But I would try to drink as much
electrolytes as I could while doing it. I do not
recommend this while taking pain meds or without someone there with you.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Good luck.
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