I did some searching thru the archives on the above. While I know my LLMD is tight with IgeneX, I expressed interest in getting tested for co-infections via Bowen's QRibb. I guess he doesn't know much about it or has no comment and steered the conversation to the MRI/Spinal Tap.
Thoughts my dear friends? I'm much improved but still have about half way to go before I feel anything like I have my life back. Am still dealing with many limiting and challenging symptoms so am suspecting co-infections.
Tested IGM+ Igenex and neg for Babesia in Feb. '04. EM Feb '03. Almost paralysized in July '03 with the pain/neuro/etc.
Anyhoo, why would/should I go for the brain scan and spinal tap and not just the QRibb at Bowen?
Many thanks,
StinkBug (aka Kathryn in Colton, wanting to belly dance on New Years Eve - if she can...)
your dr shouldn't be looking for lyme in your spinal fluid anyhow, since the yield is so low.
this makes no sense whatsoever.
as far as having an MRI that is only helpful if you had a previous MRI before or at the beginning of treatment.
the previous MRI should have had marked abnormalities of which you are looking for improvements.
the "normal" time to stop abx when on lyme is when you have been symptom free for approximately 2 months.
lyme may not be out of your system by any antibody tests because they have limits in their testing analysis and accuracy.
stopping treatment should be made on a clinical diagnosis only. period.
waste of time, IMO, to run the MRI, spinal tap or Bowen test. as well as waste of money.
if you are improving keep treating until you are symptom free, then bellydance for the rest of your healthy days.
if you come to a halt or plateau in your treatment development then inspect co-infections, as you know there is plenty of info here on that.
but as well don't rely on testing analysis alone to make the determination to treat co-infections.
My discussion with him today was to look at co-infections because of the headaches, sweats, etc.
I could have been clearer in my post.
Thank you for your input. He's not wanting to screen for Lyme since we know I have that. It seems to me that I've read people have found a spinal tap useful for revealing co-infections?
My best,
StinkBug (Kathryn in Colton - belly dancing on the web at any rate)
blood tests are used for co-infections, or clinical diagnosis.
sorry about the headaches.
as for MS vs lyme lesions these are VERY hard to differentiate. and your MRI, should you have one, should then be interpreted by an expert neurologist.
check out the columbia lyme website and read up :
http://www.columbia-lyme.org/
if your doc is tight with Igenex like you said he should have run screened your for co-infections from the get-go. but you can do that now.
and if you want to do the bowen test it's your money and blood. tell him that's what you want. if he disagrees with the parameters of the testing, as many do, then discuss it. don't let him shake you off.
if you've been on abx for ten months and are not improving at a great rate, treat for the co-infections. the meds co-incide with lyme treatment anyhow. so just hop on the horse and ride.
best of luck...
[This message has been edited by zipzip (edited 30 December 2004).]
A university hospital was supposed to send part of my husband's spinal fluid to Igenex per the request of his primary care doctor but this never happened so I don't know if results would have been different than Quest PCR which was negative for Lyme -- the only thing that was tested for.
http://www.igenex.com/formset3.htm
Stinkbug, I would probably skip the spinal tap. My husband has had 3 with negative Lyme results.
But an MRI could be useful. That is actually how my husband got his insurance to pay for IV Rocephin. Based on changes in his MRI (increased number of white matter lesions) radiologist actually diagnosed neuroborreliosis.
You could always pay to have MRI read by a second independent radiologist if you question the report. We did this with an earlier MRI my husband had done and the radiologist explained based on the location and shape of the lesions why they were probably not caused by MS.
My husband had a positive Bowen test for Babesia and it took us 2 years to find a doctor who would treat it. Steve has been struggling with Babesia treatment for 6 months now due to possible drug allergy and med side effects. We are on the 4th treatment protocol.
The first LLMD who prescribed the IV Rocephin for 2 months didn't believe the Bowen test so he was at a loss when my husband's symptoms only improved about 25% and then came back full force within a couple of weeks on orals.
Rather than spend money on tests you could go see another LLMD for a second opinion. I have found that sometimes it takes fresh eyes to spot something obvious which has simply been overlooked if you have been seeing the same doctor for awhile.
The headaches could be a symptom of hypercoagulation. That is definitely the case with my husband. I can sometimes give him 5000 units of IV Heparin thru his PICC line and make the headaches go away.
Normally I give him shots as the sublingual lozenges are too expensive. The HEMEX test is about $400 and your insurance may not pay but this is another very common diagnosis in Lyme patients.
Let us know how things work out.
Bea Seibert
thanks for the headsup! (if i checked my records i probably had the test... d'oh!)
hope the hubby is keeping up! happy new year!