posted
Ok, I have been having a lot of weird symptoms lately. about a month ago i got pains in my legs that the dr said was claudication
had a cardio work-up (needed one anyway) w/ stress test and arterial blood flow
had a neck injury and had bad neck pain. leg pains worse, cant even walk if up for more than a couple hours. then woke up last thursday morning with severe vertigo and nausea
LLMD said its not the lyme, that I am on plenty of abx and would not get a flare-up now. neurologist was stumped, went to my reg dr and he said its vestibular neuritis. gave me meclizine for the dizziness and a round of prednisone (6 days)
I called LLMD about the prednisone and he wasn't in today, and I know steroids are bad for lyme, but i really needed it because i was so severe.
well, the steroids worked. i felt like a fog was lifted off my brain. my neck pain is gone, the dizziness is gone, and the headache i had in the back of my head is gone.
i know steroids are just a bandaid and can cause more problems than they help, but in this case i needed to stop the inflammation before I got any more brian damage.
I am very concerned this was an attack of inflammation of the spinal cord and brainstem, possibly cerebellum, with motor defects causing the not being able to walk, etc. if its not the lyme, what else could it be? i know the dr's will say "its just a virus"
oh, and I also have a herniated disc in my neck, but that should not be causing brainstem issues
Posts: 615 | From maryland | Registered: Oct 2007
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Sorry about your condition. It's really sad when even the docs can't help you with something that is so severe!
I've researched the spine-bugs condition and it's an obvious one to me. Several times, I've search this discussion board with various spinal terms. It's astounding how many Lyme patients have spine problems!
Thirty-five years ago, in Lyme Connecticut, concerned parents figured out the bug-arthritis connection (with a little help from the CDC). It's sad how little progress has been made since then!
Any number of cell-wall deficient bacteria could be causing your spine problems. Or even viruses too (I am betting on the CWD bacteria, AKA mycoplasmas or L forms). Perhaps some kind of visual microscopy test might be able to find some tiny parasitic bacteria; Fry Labs would be a good company for that diagnostic test.
Steroids are dangerous for anyone with a compromised immune system. Please read up on weaning from steroids - it's not a pleasant process.
One problem: bugs may not be found in the blood, but could be in the nervous tissue. I posted these articles the other day, one of which is relevant to your question.
Good luck with your journey, it's a long road. At least you are in the right place to ask questions!!! _______________________________________________________________________
Antimicrob Agents Chemother. 2008 Mar 3 [Epub ahead of print]
Persistence of Borrelia burgdorferi Following Antibiotic Treatment in Mice.
Hodzic E, Feng S, Holden K, Freet KJ, Barthold SW. Center for Comparative Medicine, Schools of Medicine and Veterinary Medicine, University of California at Davis, One Shields Avenue, Davis, CA 95616.
The effectiveness of antibiotic treatment was examined in a mouse model of Lyme borreliosis. Mice were treated with ceftriaxone or saline for one month, commencing during the early (3 weeks) or chronic (4 months) stages of infection with Borrelia burgdorferi. Tissues from mice were tested for infection by culture, polymerase chain reaction (PCR), xenodiagnosis, and transplantation of allografts at 1 and 3 months after completion of treatment.
In addition, tissues were examined for spirochetes by immunohistochemistry. In contrast to saline-treated mice, mice treated with antibiotic were consistently culture-negative, but tissues from some of the mice remained PCR-positive, and spirochetes could be visualized in collagen-rich tissues.
Furthermore, when some of the antibiotic treated mice were fed upon by Ixodes scapularis ticks (xenodiagnosis), spirochetes were acquired by the ticks, based upon PCR, and ticks from those cohorts transmitted spirochetes to na�ve SCID mice, which became PCR-positive, but culture-negative.
Results indicated that following antibiotic treatment, mice remained infected with non-dividing but infectious spirochetes, particularly when antibiotic treatment was commenced during the chronic stage of infection. ______________________________________
PLoS ONE. 2008 Feb 20;3(2):e1633. Clocking the lyme spirochete.
Malawista SE, de Boisfleury Chevance A.
Department of Internal Medicine, Yale University School of Medicine, New Haven, Connecticut, United States of America.
In order to clear the body of infecting spirochetes, phagocytic cells must be able to get hold of them. In real-time phase-contrast videomicroscopy we were able to measure the speed of Borrelia burgdorferi (Bb), the Lyme spirochete, moving back and forth across a platelet to which it was tethered. Its mean crossing speed was 1,636 microm/min (N = 28), maximum, 2800 microm/min (N = 3). This is the fastest speed recorded for a spirochete, and upward of two orders of magnitude above the speed of a human neutrophil, the fastest cell in the body.
This alacrity and its interpretation, in an organism with bidirectional motor capacity, may well contribute to difficulties in spirochete clearance by the host.
PMID: 18286190 [PubMed - in process]
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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as far as the weaning off steroids, I am only on for 6 days. so i am weaning right away (its like one of those packs where u take 6 the first day, 5 the second, and so on)
i just hope this doesn't set me back too far, and that i dont get an immediate re-occurrance
Posts: 615 | From maryland | Registered: Oct 2007
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I'm so sorry you had to go through this. Maybe it was the Lyme dispite lots of abx. I have has problems with the juction of my spinal cord, base of my skull and cerebellum due to Lyme. It's called a Chiari Malformation. This happens when the cerebellum herniates through the base of the skull putting pressure on the spinal cord, brrain stem, and blocking the flow of cerebral spinal fluid. In most cases, this is something that people are born with, however, it can be caused by infection. I had an intial herniation of 6.6mm, but it has been reduced to less than 5mm by going on IV abx. My LLMD stated that lots of her patients have similar issues with Chiari, inflammation of the spinal cord, and innercranial hypertension. Maybe this is what was going on.
The anti-inflammatory props of steroids can offer relief from these things, but they can also wear down your immune system. Obviously, in your case, there was not an alternitive to address this other than steroids, but maybe a heavier dose of abx or IV abx would be helpful. I'd talk to you LLMD about this as soon as he/she's back in the office. I really think you can get new, crazy symptoms even if you are hitting Lyme and Co as hard as possible. I'll keep you in my thoughts!
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
i was considering chiari, but it doesn't show up on the MRI. i do have all the symptoms but they seem the same symptoms as lyme
well, the steroid helped the inflammation but i feel horrible. all achy and feverish (no fever tho, just feel like I have one)
Posts: 615 | From maryland | Registered: Oct 2007
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
YaKnow Normally,
I would say no to ANY steroids...and again especially prednisone in particular because I
have seen nothing but bad things with THAT particular steroid for inflammation.
However....
If you read the information that accompanies most medication these days it will read
something like "your doctor has determined that this medication is being prescribed for your
condition or symptoms at this time so the gains outweigh the risks" or something of that nature.
Most times I read that with a little "tongue in cheek" attitude. Because most ducks don't know
what it may or may not do to we lymies. Because they,ducks and some llmd's, just don't know enough about our condition/s.
Having said all this I must confess that barring any NATURAL anti-inflammatory supplement
that would be just as effecatious as prednisone ot any of the other anti-inflammatories(immune
suppressants). Then in SOME cases it is the lesser of two evils, and go with what your LLMD
has prescribed. He/she also will have weighed the consequences of utilization of an immuno-
suppressant drug against your reaction due to your already compromised immune system.
Presently, I am taking MOTRIN, as a break thru pain reliever working in conjunction with my
oxycodone, to accomplish getting off of my butt to do some exercising. So far it has been working quite well.
I will say that, I do feel the effects of the MOTRIN. At the end of the day, after my muscles
and ligaments and tendons and joints, cool down. I always have more pain then at the height of my days work.
I will be discussing this with my LLMD in training to ascertain the existance of some
other breakthrough pain reliever/anti-inflammatory medication that will leave my
already compromised immune system intact. I don't know if such a medication exists sooooooo.
for the time being I am using MOTRIN with some success. With the notification of some failure as well.
In answer to your question. As I said above, I would never recommend ANY TYPE of steroidal or
Non-Steroidal anti-inflammatory due to the adverse affects they all have on our immune system. Which in turn affect our disease levels.
Each morning I feel as if I was out drinking the night before and ache quite a bit EVERYWHERE!
So, naturally in my mind, I imagine my infection levels growing....
I have some abx handy and would probably start taking them again if any side effects begin to
affect me adversely.
So in some cases......and this has GOT TO BE a case by case basis....
some steroids are good....as long as they, IMHO, are taken sparingly and never for a long
durration of time nor do they remain in the system for a long durration of time.
Hope this answers your question,
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
i too have been against steroids since learning about lyme, and have not taken any since 2005.
in this case however, i feel it was necessary. i had inflammation so bad it was causing me to lose motor function. i had meningitis-like symptoms. i was afraid of any further brain damage.
now in a perfect world, i would go to the ER and they would run tests and try to fidgure out what is causing it. but i know all they would do is make sure I was not going to die that night, and send me home to see my primary care physician, who has no clue what to do other than stop the inflammation.
my LLMD did call back today and said that it is not ideal, but in this case it sounded necessary and 6 days is not a long time, as long as I am still on the abx hopefully it wont set me back but if it does to call back
Posts: 615 | From maryland | Registered: Oct 2007
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