posted
Because I'm still running a fever and have been on antibiotics for almost two weeks, my regular doctor got in touch with the infectious disease doctor (my first appt. is Tues. with her) and they sent me to the ER for blood work and a spinal tap. During the first attempt of the spinal I fainted. Then they tried again three more times and could not get any fluid. They sent me home and told me that I would have to be put to sleep in order to have this test done. Has anyone ever heard of this or had a similar experience? I feel tramatized!
Thanks.
Posts: 50 | From Virginia | Registered: Jan 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Yes, it took 3mgs of Ativan to get me mellow enough for them to tap some nectar. It was a waste, although it ruled out other conditions and proved to a dubious duck that I wasn't psychosomatic.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
My kids are sedated when they have spinal taps. They have idiopathic intracranial hypertension and had 3 taps in 2005.
Were you nervous? Could you be pre-treated with Xanax or Ativan?
Are they using Fluoroscopy? It's a "live x-ray".
Good luck!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi SKBland. Goodness, what an experience! Why is it so difficult? Are you moving around? Are you too skinny? :-) A nice Xanax ought to do the trick! However, you already have a positive Lyme test, right? So I would wonder why the doctors need to do a lumbar puncture...
Normally it's infectious disease docs or neuro's who like to do these.
LLMD's do NOT usually order these as part of a routine Lyme workup.
Do you have an LLMD?
They are not typically very diagnostic for Lyme, except to find perhaps elevated proteins/high opening pressure.
This is another reason why it's a good idea to be under the care of an LLMD rather than another type of duck if at all possible.
Other types of ducks will quack and scoff when borrelia is NOT found in your CSF fluid (as it rarely is), and then will try and discount your positive Lyme test.
I'd be thinkin' real hard before going back for seconds, if it was me.
I had a lumbar puncture mainly because of numerous brain lesions, abnormal evoked potentials, fear of MS and desire to know whether I had oligoclonal banding -- not that bands would have ruled in or out MS but would have just given me more information.
If you DON'T have all that stuff but do have a positive Lyme test, I'd skip the tap. (I'm still paying mine off almost a year later!!!)
Best wishes on a repeat, if you have one...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Get a LLMD and run away from these ID ducs.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
They were doing the spinal tap because they think I might have lyme menengitis due to neck/leg/rib pain and my fever that won't go away. This is the first one I have ever had done. They did give me through my I.V. pain medication as well as ativane to relax me. After I fainted the first time the doctor tried three more times in different places & he kept pushing the tube further into my spine but each time he could not get any fluid. He said I have to be put to sleep in order to get it done next time. It was all a big waste of time...after going through all of that and not getting any fluid. Today I feel like I've been through some major battle and I'm so tired. It was an infectious disease doctor that ordered the test. I have to go see her on Monday and I'm sure they will re-order the tap. I do think it's good to find out and make sure that there is not any infection or bacteria in my spine but I definately don't look forward to next week and doing it again.
Pab, I don't know what "Fluoroscopy" is but there was not a live x-ray.
Michelle M, No, I'm not real skinny, just average. I sat very still while they were doing the procedure. My husband was holding me. I think maybe the doctor got nervous after I fainted and maybe that was the problem...who knows! I feel like a pin cushion today though. I don't have an LLMD..I have some names & people I need to call. My regular doctor sent me to the infectious disease doctor. Because my memory has gotten bad, my neck pain, reoccuring fever & tingling & numbness in my right arm and part of my upper back..this is why they want to check my spinal fluid, I guess to rule out lyme menengitis or anything else that it could be. Thanks for the "best wishes"....I'll need them!
Posts: 50 | From Virginia | Registered: Jan 2006
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posted
I would not go back to those people under any circumstances. They lack the necessary skill to be doing invasive procedures on such a critical part of the body.
They are poking needles into your spine blindly, and obviously not having any idea where the needle actually is relative to your spinal canal.
It is malpractice in my opinion.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
From all the posts, and I've read a whole lot of them over the past 4 years, I've read, I can't remember very many folks having a good experience with spinal taps, me included.
First of all, they don't really find anything remotely related to lyme, cause they don't even send it to a lab that tests all the bands.
I had one done in Feb 2002 soon after being dx'ed with LD. When the results came in, the Neuro doc escorted us to the door, literly (sp), when we mentioned LD.
What a big ole waste of time and money.
Get yourself to a real LLMD and stop wasting time as I did....just wish someone would've told me that way back then.
posted
I had a spinal tap in the fall of 1986 at the Mayo clinic. They thought I might have viral meningitis. It was Lyme, but they misdiagnosed it as something else. I didn't have any problems with the spinal tap. I didn't think it was bad at all. I think people think they are going to be worse then they really are, I didn't think it hurt either.
It sounds like you might want to get it done some place else if they're having that much trouble doing it.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I'll never get one. I hear they are really really uncomforatble.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
So sorry you had such a traumatic experience with the attempted spinal tap.
I guess I'm a little confused & have some questions. I hope I don't sound too nosey.
1. Was the dr looking for Lyme Meningitis based on your symptoms?
2. What antibiotic have you been taking for 2 weeks?...also the dose per day?
3. If they found Lyme bacteria in your spinal fluid, what would they change in your treatment?
4. What lab will they use to test for Lyme?
5. How long have you had symptoms?
6. Do you recall a tick bite?...or rash?
Based on the symptoms you have, it seems likely you could have Lyme and/or Co-Infections (other Tick-Borne Diseases - TBDs).
There is a low percentage of positive Spinal taps when looking for Lyme. Also, a Lyme Literate Med Dr (LLMD) specifies certain things be done & they know how to interpret the results.
A negative test should never be used to rule out Lyme disease. Many reliable sources state that LD is a "clinical diagnosis" based on symptoms, tick exposure, response to treatment, & test results may be supportive.
Also, if treatment is not strong enough or long enough, there may not be a change in symptoms.
I highly recommend that you contact a LLMD for an evaluation - ASAP!! It could save you a lot of stress, trauma, discomfort, time and money.
The LLMD will know what tests are necessary to diagnose Lyme, Co-Infections, & other diseases that could be causing your symptoms.
They use labs that specialize in testing for TBDs. Example: IGeneX in Calif www.igenex.com Medical Diagnostic Lab in NJ www.mdlab.com
An LLMD also knows which antibiotics (abx) and/or combination of abx work best in treating Lyme & Co-Infections.
It's 33 pages of excellent info written by one of the best LLMDs in the country. Maybe your regular dr would be willing to follow the recommendations in the Guidelines until you could be evaluated by a LLMD.
pages 9-10: Symptoms. You may have other symptoms that you didn't realize could be caused by Lyme.
pages 17-19: Recommended Antibiotics & Length of Treatment
Keep in touch & ask as many questions as you want to. We'll do everything we can to help you get the info you need.
We care!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I had a lumbar puncture done when I was initially diagnosed in 1993 to rule out other things. That's how they were diagnosing in those days.
Gave me a diagnosis of demyalenating(sp?) disease first and then went about ruling out everything that wasn't Lyme.
It went horribly wrong, spinal fluid leaked and I was in the hospital for 10 days with an internal headache that felt like my nose was blowing off. No headache before or since has come near that experience.
I realize I'm probably in the minority but given my experience I wouldn't consent to having one unless there was no other choice. And in that case find a competent doc to do it. And would have them do it under a fluorscope. I had to have 2 courses of steriods to stop the leaking.
If they're testing for lyme this way the odds of finding it are very low. Please do persue an LLMD like suggested above and hoopefully you can avoid it unless absolutely neccessary.
Good luck and if you have to do it I wish you no complications and great drugs.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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1. Was the dr looking for Lyme Meningitis based on your symptoms?...Yes
2. What antibiotic have you been taking for 2 weeks?...also the dose per day? Tetracycline, 1500mg per day.
3. If they found Lyme bacteria in your spinal fluid, what would they change in your treatment? I believe they would give me IV antibiotics
4. What lab will they use to test for Lyme?..I don't know.
5. How long have you had symptoms? I've felt run down for as long as I can remember, pain in neck/legs/ribs started two years ago, this past year I've had continuous fevers, pain, really tired, memory loss, muscle spasms/twitching, numbness and tingling in my right arm and hand, numbness and tingling down the left side of upper back.
6. Do you recall a tick bite?...or rash?..No tick bite, I was bitten by misquitos a lot over the years. My rash is strange red lines that appear for no reason, then they dissapear and re-appear, they don't itch or hurt, they just come and go.
I don't know what I'm going to do now. I definately want to make sure there is nothing in my spinal fluid but I'm scared to death to try again. Drugs don't seem to help in my case. I guess, if they put me to sleep, it will be okay...but then I have to worry about the doctor messing up. All of this stress and worry is definately not helping my situation!
Posts: 50 | From Virginia | Registered: Jan 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
SKB, you have some of the classic symptoms of bartonella. Fevers, odd straight line rashes [look like stretch marks ?]. You also have classic lyme symptoms with aches, pains, fatigue.
Walk, no run, to the nearest LLMD. There's a very good doc in your state. Post in the "Seeking a Doctor" section of this forum and someone will send you a PM on contact info.
Personally, I would not do the spinal but find an LLMD instead. The people you're dealing with have no knowledge of this disease and it's co-infections. They can't even do a spinal properly. Just out of curiousity, do you have pain on the soles of your feet ? If so, this would fit right in with the fevers, straight line rashes as clue's that you have bartonella.
Approximately half of all those infected with lyme/co-infections never have a rash nor recall being bitten by a tick. Deer ticks in their nymph stage are the size of the period on the end of this sentence, their easliy missed.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
1) Ask for an anesthesiologist to to the spinal tap if you have to have it. They have more experience.
2) Ask to have it done under x-ray. They should numb the area where there are going to do the tap, too.
3) Lie down for a long time aftewards. I got the horrible headache from it.
Good luck! Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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posted
So sorry it has taken me this long to get back to LymeNet. Spent lots of time with my family over the weekend.
Thanks for the additional info.
From your list of symptoms, I think it's a good possibility that you could have Lyme and Co-Infections. Ex: Bartonella, Babesiosis, and/or Ehrlichiosis (Human Monocytic Ehrlichiosis, Human Granulocytic Ehrlichiosis). Most cases of Human Monocytic Ehrlichiosis (HME) are found in the south-central & southeastern states. HGE has been found in many states across the country.
A brief description for each is in "Diag Hints & Treatment Guidelines..." You can find additional info under Newbie Links.
As you've probably noticed, symptoms overlap for all Tick-Borne Diseases. This is why it is so important to be evaluated by a LLMD. Because they've treated so many patients with Lyme & other TBDs, they have special insight & understanding of these complex illnesses.
The Lyme Disease Foundation's brochure, "Tick-Spread Diseases", gives the following info:
"Ehrlichiosis symptoms: fever, malaise, headache, chills, severe muscle aches or pain, vomiting, anemia, lung infection, decrease in white blood cells, elevated liver enzymes. A rash occurs in a small percentage of people. Neurologic manisfestations include seizures, meningitis, confusion, cranial nerve palsy, & change in mental status."
If the infectious disease dr insists on testing, I recommend that you really push for tests done by the IGeneX Lab in Calif. Maybe she'll be willing to call & discuss your situation with them (Dr Nick Harris may be available.) IGeneX is an excellent lab & they specialize in Tick-Borne Diseases. www.igenex.com Phone: 800 - 832 - 3200
One possibility has not been mentioned concerning some insurance companies & Lyme disease. If your spinal tap is negative for Lyme, the insurance companies put that in your medical file. Then if future LD tests are positive, they may not make the change, & then can refuse to pay for Lyme treatment.
What part of VA are you in? Have you received info about any LLMDs? If you have, you could call tomorrow & make an appt. It can take some time for an appt, but maybe they've had a cancellation & you can get in sooner.
Also, you could ask if the LLMD recommends spinal taps for diagnosis of possible Lyme meningitis. They may not give an answer, but you can ask.
Based on all you've heard about spinal taps for Lyme disease, you & your husband will have to make that decision. If you have it done, I hope you can have the test done by IGeneX !!! It would increase the chance of getting a more accurate result.
Again, I apologize for taking so long to get back to you.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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3) Lie down for a long time aftewards. I got the horrible headache from it.
That was the worst.... They couldn't kill mine with morphine, vicodin, or demerol.
The ER doc said that only the corpse in med school sat as still as I did, yet I think it is the cause of the excruciating pain that I've had in my back for the last year.
Never again will I do that. Even though the one that I had saved my life.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
The first one was really bad; it hurt like crazy, my back went stiff so I couldn�t stand up straight for several days. The duck wanted me to travel home by train the same day. My mom objected, so I was allowed to stay at the hospital. Because of my backpain and feeling really sick, I had to stay 5 days.
The second time it was okay. It was a young doctor. I think he was nervous of doing any mistake, so he was doing his very best. It didn�t hurt very much, and I think I only stayed over night.
It seems that some ducks think they know what they do, others actually know what they do.
--S
Posts: 155 | From Norway | Registered: Jan 2006
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