Should I get a spinal tap?

Dont bother. A spinal tap is dangerous and painful. It takes time to heal, and if you move the wrong way, ou could end up in the emergency room with severe complications.

As you say, ma times you won't even get a positive. Then the doc really wouldn't believe you have it. Unfortunately, you can't change anyone. Even though you and all of us have been trying to chance the doctors minds for years now. You know the truth and you will be able to help ourself, along with he help of your Llmd, who really knows best.

Can your Llmd get the IV abx for you? My Llmd got it for one of his patients for 6 months! And are you sure you want to go the IV route? There are a lot of side effects and risks associated with that method.

Samantha

Some of the issues surrounding IV is that 20-30% (according to my Llmd) of people end up having gall bladder disease. So at 1 am in the morning, they end up in the emergency room getting their gall bladder removed and are in intense pain. I had the gallbladder test, and my Llmd said my risks were even higher, so I stayed far away.

Also, those of us with long term lyme have a lot of lyme bacteria. Too much of a die-off at once can cause toxicity. I was on orals and I still ended up in the hospital with sepsis!

On the other hand, like you said, it is stronger and can really put a dent into treatment and take a lot of time off the recovery.

My opinion is to go with orals (abx and herbs) and see how you handle the toxicity. Do you detox well? Definately look into getting the HLA-DBR marker and MTHFR gene test mutation to see if you have a difficult time with detoxing. If so, IV is a no-no. I have a friend who had these mutations (only one) and the IV set him back 2 years of detoxing before he could even start treatment!

I am not trying to deter you from IV. Like I said, it can really be very beneficial for some. But it can also be very dangerous. I think many precautions should be taken just in case.

Samantha

Bdoc, if you have an LLMD and are already treating, I would suggest skipping the spinal tap. When we have LYme, noone knows how our bodies will react--to anything!! As samjones pointed out, IV abx can be very good, or very bad. Why chance it? Just to prove to your nitwit doctor you're not lying? You already have a doctor that believes you, why put yourself in harms way to prove a point that may not turn out how you anticipated in the first place? (could be negative).

I, along with alot of other people on here, have had to deal with real arrogant jerks. I've wished Lyme on the lot of them! But don't waste your precious energy trying to convince anyone that you have Lyme. You know you do, your LLMD knows it too. Stay on track and concentrate on healing and getting your life back!

I would bother with the spinal tap as I've had one and it showed nothing! Don't be afraid to get a PICC line I just mine taken out Thursday. IV rocephin and ABX in that class are the only ones associated with gall stones and if you are prescribed that particular one the Dr usually gives you a medication to take orally to prevent them even though the risk is low. I'm still on oral ABX after the IV as I've had Lyme ten years or so.

I wouldn't!!!! Spinal taps added to my Lyme and destroyed my back! I went in for 1 and left the next day after 4 taps! Now the 2 disks that he tapped in between are gone I have been diagnosed with osteoarthritis and scoliosis I can't sleep I am having trouble walking and I am 26. My LLMD told me that the Lyme attacked where the taps were done. He said even one tap can cause nerve damage. It isn't worth it when there are more reliable blood tests. Sorry about the rant but if I can save anyone from going through what I did that would make my week! :) I hope whatever you decide helps you through this journey. Sending positive thoughts your way!

bdoc,

Your ID doc is an interesting case study.

You have lyme disease. Yet he doesn't believe it, and would prefer to let you suffer. However he would be willing to inflict a barbaric and almost worthless "spinal tap" on you. Is his name Dr. Butcher or Dr. Slaughter.

Don

I did a spinal tap and that headache was the pits! I only did it because I have unspecified matter in my brain and spots. If your brain is clear I would say don't bother! It didn't hurt while doing it, but the freaking headache lasted a week! Sheesh!

Sorry your doctors aren't supportive :(

Everyone's experience is different. I don't think we should all tell her not do it based on our own experiences. I had it done. It was very tolerable and no pain afterwards except my lower back was a little sore for the first day or so.

I am glad that I had it done. My mitochondrial doctor is who ordered it. He was checking to make sure that Lyme still isn't an issue. I have been treated several months thru my port plus orals. I believe I have Lyme damage, but no more active Lyme. I am dealing with mito junk now and the spinal tap helped to confirm that. I also got 2 skin biopsies and a muscle biopsy the same day I got the spinal tap. The spinal tap was a walk in the park compared to the pain from the muscle and skin biopsies. I wasn't put to sleep for any of this due to my autonomic dysfunction.

I didn't get the headache afterwards either.  Yes, I have met some lousy doctors but it really comes down to what each person is comfortable with in regards to testing.

I just had a spinal test done today Iam in a lot of pain today