posted
My wife recently had a lower lumbar MRI done. Our family doc informed us that the images showed inflamation of her lower spine(the very end).
Our doc has set us up with an appt. to see a Neurologist. Our family doc told us the Neuro would probably be pushing for a spinal tap. My wife isn't crazy about this idea. She has been having a rough ride through this lyme. The doc told us she wants to rule out any other cause of the inflamation.
She said that if the lumbar puncture shows anything but Lyme, they would probably recomend STEROIDAL treatment. She said she is afraid of missing a window of opportunity to treat the inflamation before it is irreversible.
Our LLD told us right from the get, that STEROIDS should never be taken. I've seen the reaction of lyme disease to steroids. We have pretty much ruled out the use of steroids at this point.
I just was wondering if anyone has personally experienced inflamation of the lower spine. If so, was there any form of treatment that was efffective?
My wife has been having numbness in her feet, hands, leg weakness. She is having a very difficult time walking unassisted.
Any prayers for my wifes healing would be greatly appreciated, as we face this terrible disease.
Thank you all!
Posts: 7 | From Central Pa. | Registered: Mar 2013
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posted
We are nearing the three month mark. She's been taking oral abx and every two weeks our LD has been giving her injections. Someone told us that it might be helpful to use IV treatment to penetrate the blood brain barrier. I really don't know enough about the difference between the two types of delivery to make a judgement on that. The LD has treated for Babesia. I think that is what he was using Mepron for.
Posts: 7 | From Central Pa. | Registered: Mar 2013
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posted
Three months?? Give the LLMD time to clear these infections!!! It can take a year or more to clear babesia alone.
Yes, mepron is for babesia. Babs can cause a LOT of pain, as can Lyme.
Keep going!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What you are describing sounds like ankylosing spondylitis to me.
I suggest you do a "search" (see button at top of page) on these words to find past posts by people with lyme who have this particular symptom pattern.
For example, here is a post on the topic that I found doing such a search:
Before I became familiar with the Burrascano Lyme Treatment Guidelines, I put myself in the hands of a neurologist. They all want to do spinal taps on people who have lyme or have a positive lyme test.
The neuro will not agree you have lyme unless it shows on the spinal tap. However, according to Burrascano, the likelihood of lyme showing on a spinal tap is very, very low.
In my case, the lyme did not show on the spinal tap and the neuro treated me like I was a mental case. (This is with a positive lyme test from LabCorp and an abnormal brain scan that said "lyme cannot be ruled out.")
So, if she decides to go, she needs to be prepared for what the doc is going to want to do. Then, be prepared for the humiliation the doc will subject her to. A spinal tap is frightening and can be dangerous and gives many people the headache from hell. If she decides to do it (I would NOT do it), have her lay down in the back seat of the car driving home and stay laying flat for the rest of the day and that night. This is the best way to avoid the headache.
If she gets the headache, she should go back for the "blood patch" to patch up the hole in her spinal column that is continuing to leak spinal fluid. The blood patch gives almost instant relief.
So, to summarize, I might go for the doc's opinion on whether or not it is AS or something else, but I would not do his tests and I would not be treated by him. Instead, I would treat with antibiotics, just like the lyme doctor is treating her.
I would assume that these symptoms are from lyme.
It is sad, but neuros are almost always the enemies of lyme patients.
Here is Burrascano on spinal taps:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children." (page 8)
I suggest you read and STUDY the Burrascano Guidelines to try to become an expert on lyme and its treatment. That is the best way you can help your wife. I have these Guidelines virtually memorized.
Once you have this information, you will be in a much better position to make decisions about what doctors to see, what tests to allow, etc. and also will form your own opinion about all of the symptoms lyme can cause and what is the best treatment.
With this disease, you just can't put yourself in the hands of the medical profession and wait for them to fix you. You MUST become educated.
I applaud you for making this post and trying to gather data about this particular symptom from other lyme patients. Very smart.
If you get the Guidelines up on your screen, you can do a search for any word you like, such as "I.V." etc. to see all the Burrascano says about it.
Be sure to look at the list of lyme symptoms on pages 9-10. Here is an exerpt:
"Unexplained back pain Stiffness of the joints or back" (page 9)
Please know that the essence of lyme disease IS inflammation--anywhere, everywhere, at any time, at all times. Lyme disease CAUSES chronic inflammation.
A book that discusses this is "The Lyme Disease Solution."
You can order it through LymeNet by looking at the left side of the page for the Amazon link.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Miller, I agree with TF and do not do the spinal tap/lumbar puncture. Minocycline will cross the blood brain barrier and IV therapy might be better, it depends on the person. You will have to be on long term antibiotic therapy and you must take probiotics to repopulate the gut with good bacteria. Parasites might also cause inflammation, but in the big picture, it is difficult to say what is responsible for inflammation. Get to a lyme literate neurologist and ask for a name here of a competent lyme neuro.
Posts: 482 | From Oregon | Registered: Feb 2011
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posted
Personally, I would never do a spinal tap unless my life was in immediate danger. I've heard too many horror stories.
Ditto on the probiotics. Get the good stuff and take tons of it! Candida/yeast can cause a LOT of inflammation.
She must also watch her diet carefully. No sugar and no white foods.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
before i knew i had lyme i had severe back pain. i had steroid injections in my back for several months.
in one conversation the doctor asked about other illnesses and i said i had recently been diagnosed with lyme and was awaiting confirmation. he about lost a gasket. he told me never again would he treat me with steroids and told me about the damage they could do. he really let me have it.
i didn't know anything about lyme at that time and the damage was done.
he was one of the best docs i knew.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Does the MRI show inflammation in the discs and ligaments of the spine (i.e. the spine structure) or does it show inflamation within the spinal fluids?
I have had a lot of difficulty with my upper spine (neck). The discs have deteriorated
When I first started having this problem, I did not know my problems were lyme. So they gave me a steriod shot and within 15 minutes I got much worse and then developed new symptoms I have yet to rid myself of.
When they give you a shot of steriods, it lingers around in your system for several months. I have read the several LLMDs will alllow steriods but only as long as the pateint is on IV abx and only if the inflamtion is causing severe or life threatening symptoms.
I think it si good for lyme pateints to rule out other things, not everything is lyme.
I has a spinal tap done, and it was a snap. The doctor had me lie flat on my back for two hours afterwards to aviod any unpleasent side effects.
You can always turn down steriods. But, you never know, the spinal tap might provide you with some helpful information. If the problem is lyme, you might get lucky and they might find it in teh spinal fluids. That, in and of itself , might enable you to get IV abx paid for, plus the supplie sand cost of surgery for port, paid by insurance.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Spinal tap was no picnic and they got no information from it, that they shared anyway
Then the RA doc did steroid shots for back and hips.....Dr. that was doing procedure didn't want to do it. He knew I was sick.
Well the RA dotor's husband was the infectious disease doc and he insisted ,,no problem just do it. He never thought I needed more than prozac, loose weight and get on with it..
This is after several strange markers/blood WORK tests etc.
I always have a high CRP test/have for years.
Deal was nobody told me the pro's and con's///
It was gas on the flame of this disease..
In 8 hours after third set (,within 4 month's) I thought for sure I bit the bullet...
It will make this illness so hard to treat.
What about ozone injection's ,pain meds until you''re /she is well?/
I have the low back /tail bone pain so bad it feels like there's a meat cleaver just cutting, slowly through, hips hurt, get stuck, and that's just some of the bone issues.
Then there's skin, muscles, just about anything can hurt..Like this week I have to have help again getting up, painful laying in bed, hurts to walk down stairs and that's even if I can...
She's not alone and maybe something is going on, like my S1L5 is pushed in grade A.....
Some of us just get PAIN AND WEAKNES ,FATIGUE..
BRAIN FOG
YOU'RE NEW HERE ,SO YOU DIDN'T SEE MY POST ABOUT MY KNEES HURTING AND SWELLING UP..
I could barely walk and one day headed to the bathroom , my knees just locked in pain and I fell against the toliet,,,,AND BROKE IT
I so hope you caught this early and go at it/treatment.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Miller, I read you post with great interest. I recently was told by my urologist that I had Pelvic Floor Dysfunction.
I have inflammation in L3,4,&5 in my back. I also have cystitis, severe constipation, severe pelvic and vaginal pain, and off and on numbness and tingling.
My urologist told me to read the book A Headache in the Pelvis.
I am now seeing a knowledgeable Physical Therapist that deals with these issues.
It has to be one that understands this theory and book. I am just in the beginning stages of therapy, so I can't tell you the results yet.
Although, symptoms I have really do point to Pelvic Floor Dysfunction along with Lyme.
I would highly encourage you to look into this as a possibility. Don't know if it would help, but better than a spinal.
I have had one and I am fine, but hated to do it and it found nothing.
Posts: 620 | From Ks | Registered: Oct 2011
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