posted
I am new here and this is my first post. A little over a month ago I began with numbness in upper left side (arm, hand, shoulder, neck,ear and even skull) and was feeling 'out of sorts' like foggy. Started getting off balance so to speak (like being on a boat) and generally just foggy with alot of nauseau
After a couple of weeks went to doc and tested positive for lyme (western blot). ELI was equvocable, Igg all absent, two of three IGM were present. Keep in mind I dont really understand all that except that doc said positivetly an active case of lyme.
Put me on Doxy for 3 weeks.Ordered a Brain MRI for concern of MS. Brain MRI was with no contrast and was fine. No improvement after 2 weeks. went to neuroligist who ordered ENG, BAER, SSEP, Brain MRI w/o contrast, Cspine MRI w/o contrast. Hadd all done this week. dont know about results yet except ENG had adnormalities. The thing where they put cold and hot air in ear was abnormal as one side did ot make me dizzy. She told me acouple of other abnormalities but I didnt understand them....
This is my question. My doc said last week to stay on Doxy until after tests. He believes all symptoms are from lyme and if tests are normal then he (Primary not neuro doc) wants to do spibal tap before starting IV antibiotics. Is that really necessary? I already got a positive from western blot and read that spinal tap is not conculusive and if the test today showed neuro abnormalities whouldnt that be enough to dx neuro lyme and just go forward with IV antibiotics?
Has anyone else had these tests?
Posts: 5 | From ny | Registered: Jul 2009
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Welcome!
No, the tap is absolutely unnecessary and may do more harm than good. As you stated, you already have a positive test result, and the other tests have already ruled out many differentials... why risk it for only a 20% chance at another positive?
Lumbar punctures are serious invasive procedures, and should be reserved for last resort differentials.
It sounds as if your physician is willing to treat but is hesitant for some unknown reason? Please find out exactly what that reason is before even considering consenting to this procedure.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Thanks. My feelings exactly. He is definetely willing to treat...and I believe will go the distance with me. He just has the opinion that a spinal is no big deal. I KNOW if i object he wont insist. I just wanted to be sure I wasnt being unreasonable.
Posts: 5 | From ny | Registered: Jul 2009
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Not at all. Have you read Dr. Burrascano's Guidelines on the issue yet?
Believe me, having had a traumatic tap with 2 ensuing blood patches... it IS a big deal.
Posts: 7052 | From Colorado | Registered: Mar 2003
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I have not read that. I just found this site yesterday. I spent the last few weeks thinking i was going to just get better on the oral antibiotics.
Posts: 5 | From ny | Registered: Jul 2009
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
And you still may!
The thing to know is that you will need to stay on antibiotics until you feel completely well. This may take awhile, but this does not mean that you won't get better.
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.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I have refused a spinal tap. Understand it's a double edged sword. If you don't have it, you will likely not get IV antibiotics. But the likelihood of a negative tap is big so the result may be the same. I stand by my decision, but my treatment has been less aggressive because of it.
Here's what may be the bigger issue. For many Dr.s who are not LLMD, they may give you an IV for a month and then say, "All done, you will be better now." When longer courses of treatment may be needed.
I went through all of this and you should really discuss with your Dr. how long he intends to treat. Say, "So if I did have a positive spinal tap, how long would the treatment be?" Until I get better? Or is there a certain time?
If I get IV for say two months and you pull the picc line, then what do we do? Will you continue with oral antibiotics? You need to know all of this.
Most insurance companies won't go for more than 1 month of IV, maybe a second month. Then you have to pay out of pocket or continue on orals if your symptoms don't resolve.
I'm with Melanie. The other tests you are having done will more than rule out other things. My sister with MS has even had two spinal taps and both were negative. Not worth the risk.
Posts: 43 | From Upstate NY | Registered: Jul 2009
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bettyg
Unregistered
posted
welcome cw
follow melanie's wise advise.
make sure you on 3 months of oral doxy and showing NO symptoms for 2 months before you discontinue them.
print off my DOSAGES/MEDS FOR ADULTS/KIDS of dr. b's guidelines; 2nd link below ... i broke it up for easier reading.
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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