HealingWell
Search Close Search
☰

Lumbar Puncture--Burning Brain/Spine

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/18/2015 3:03 PM (GMT 0)
Hello again,

I had posted that I've come down with very bad headaches and a burning sensation in my brain and now spine. This alarmed me so much that I went to see a neurologist. He wants to do a lumbar puncture to see if Lyme (or other bacteria) is in the fluid. He said if Lyme has invaded the brain/spine the ONLY way to get rid of it is IV antibiotics because of the blood/brain barrier.

I wanted to stay away from antibiotics as much as possible but now I am getting desperate. My previous doctor recommended IV antibiotics but my insurance denied it. Seems only the lumbar puncture will PROVE my case. But of course I'm terribly frightened of the procedure and not that happy about having IV antibiotics either.

Has anyone had experience with a spinal tap? Is IV antibiotic really the only way to heal lyme that has gone to brain/spine? Thanks again for all your input.
Posted 12/18/2015 6:03 PM (GMT 0)
I'm sorry you are faced with that decision...

Personally, I wouldn't want to do something as invasive as a spinal tap...unless I absolutely had to.

I have definitely CNS involvement - inflammation in my spine, and I am treating with oral abx and herbs.

No, IV antibiotic therapy is not the only way to heal Lyme that has gone to the brain and spine.
Many of us have it in our CNS.

Traveler, our veteran Moderator - she healed with herbs alone.
A fellow Canadian (has a YouTube video) also healed with herbs alone.

I believe CNS involvement is often the case...and many have healed.
Because I have CNS involvement - I requested to be put on Minocycline - as it has good penetration of the blood/brain barrier.
I also take Japanese knotweed for the same reason.
Posted 12/18/2015 6:13 PM (GMT 0)
No one here is going to recommend that you get a lumbar puncture. We always recommend AGAINST it. You don't have your email enabled so I don't know if we've talked via email. Do you have a LLMD?
Posted 12/18/2015 7:29 PM (GMT 0)
Did neuro for sure say your IV antibiotics would be covered if the spinal showed LD? Also, there's the chance it won't show and then will he be like "you no longer have Lyme." I can totally see that happening. Sucks that you have to go to these lengths. Would you want to at least try oral abx first? There are some that are better at crossing the BBB.

You were doing the ozone right? Have you tried detoxing like crazy to get rid of the burning sensation?

I sometimes get a cold sensation on the top of my head. I know this is all really scary. I feel like every day is a new thing. Today my right butt cheek started buzzing. lol. I couldn't make this up if I tried.
Posted 12/18/2015 8:57 PM (GMT 0)
That's not true at all. If you would have seen me before I healed, there was absolutely no doubt that my brain was badly compromised and that the infection had been there for a while. Yet I healed with herbs only.

Lumbar punctures rarely turn up positive test results. There has to be a very large amount of bacteria in order for it to show up - and it's very difficult for the bacteria to get into the spinal fluid - even harder than the brain.

And I surely wouldn't trust a doctor to know what my insurance covered! They rarely know either, and how could they? Think about how many different insurance companies are out there, and how many plans each one has - how could a doctor keep up with all of that???

Be very leery of any "advice" from anyone that isn't Lyme literate by ILADS standards. You will waste time, money and resources chasing down that kind of advice, only to find yourself so many months further down the road and still just as sick.

Cut to the chase and see a LLMD that has been trained by ILADS - but still check up on them!! They too can be misguided.
Posted 12/19/2015 4:57 AM (GMT 0)
I think one of the reasons people avoid lumber puncture is because there's a risk of becoming paralyzed or having permanent back pain, and/or spinal fluid leaking if the procedure is not performed correctly.

I would recommend that you google around about people's experiences with lumbar puncture so that you can make an informed decision for yourself. There are entire forums about people who are suffering injury from lumbar puncture.
Posted 12/19/2015 4:57 AM (GMT 0)
Thanks for all the replies. You confirmed what I feel, that I strongly don't want to have a spinal tap.
So it's NOT true about the blood/brain barrier?

Girlie--you don't have problems taking all those drugs at once? I was on Doxy & Claritho and I thought I would die! I couldn't function at work.

Sarah--I did have an LLMD Ilads Dr R in NYC. He wanted me to do 4 very strong abx at once--my insurance would not pay for the bicillin shots and the other 3 abx made me quite ill. (& I just activated my email-thanks)

Kyo--Neuro said it would be covered but what does he know really? BCBS would not pay for my bicillin shots cause they said there was no PROOF I had Lyme even tho I was positive by CDC and NYS criteria! They have their own criteria! Can you believe it? I just stopped the ozone this week because of the terrible head pain and ...LOL thank you for making me laugh about the right butt cheek buzzing (haven't had that symptom...yet)

Traveler--did you use the same lyme protocol both times you healed? and did you work with a doctor or do it yourself?

Thanks again everyone:)
Posted 12/19/2015 5:27 AM (GMT 0)
All those abx make me feel like I have lyme times 10. At least for the first month and a half. The severity has been easing a bit.

Oral abx, people say, will cross the bbb. I still have my neuro sides, but I've only been on them for 2 months.
Posted 12/19/2015 5:58 AM (GMT 0)
LymeNYC - I'm only on two antibiotics - Rifampin and Biaxin.

Are you referring to what's in my signature at the bottom of the page? Those are all the ones I've taken at different times...not all together.

I also take some Buhner herbs: Japanese Knotweed, Sida Acuta, Houttuynia, Hawthorn, Cryptolepis.
Posted 12/20/2015 3:22 PM (GMT 0)
Detoxing enough is almost always the key to not feeling like poo.

Yes, I did use the same thing both times I was infected. I had to use am alternative medicine practitioner the first time around as I was far to compromised to deal with it on my own. The second time around, I had no choice but to do it on my own - the practitioner that had helped me the first time had to move out of state to take care of her aging parents, the nearest LLMD was a 15 hour drive, and there are no other practitioners in my area that I would trust. So I figured I'd be safe sticking to the same treatment that healed a 40 yr old infection for me. It wasn't nearly as bad as I imagined it! LOL!
Posted 12/20/2015 3:48 PM (GMT 0)
NYCL,
hello!I am also on Abx.(orals and herbals and treatment for MCAD).
So I tried Clarithromicine with Rifampin and it almost killed me, too.The problem was I was not taking it progressively!
eyes eyes

Maybe talk to LLMD so that he modifies your protocol or change your LLMD for another one.
I can not understand why you should start iv s if you could not tolerate orals?From my point of view herx should be worse.

My opinion is start low, and build up with help from an LLMD. Mayne start herbs and then move to Abx.? confused
Posted 12/21/2015 8:08 PM (GMT 0)
Hi

i had lumber test twice. I found the manipulating of spinal bones more painfull than needle going in.They manipulate the bones with hands to find a good gap, You lie on your side legs curled up.it was not that bad to be honest. The headache afterwards was far worse.I.t could not have been that bad As first time 2 doctors had 5 attempts going in failed to get sample,Then they got the regestra got it in one
i was annoyed as this sample lay for 8 weeks untested lost had to chase them to find it In end lab said sample was spoiled
year later i tried again i was promised in writing same test as my uk nhs western blott tests on the spinal fluid. as i have 4 nhs western blott positves. again they did not do this test
seems il never no if chronic neuro burelia as need positve lumber tesst for this diagnosis ,

wish i new this rarely shows nothing.i would not bother if i was you As if i new i would have left it The first attempt

so it was not that bad headache afterwards was way worse. good luck
✚ New Topic ✚ Reply