Should I have an MRI or is it waste of $$? +lyme, +coinfections

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Date Joined Aug 2010
Total Posts : 552
   Posted 9/2/2010 11:00 AM (GMT -7)   
I called the Infectious disease doc that some of you may remember I have had a match with a couple of weeks ago!  I called to ask for my test results, as it would be 2 weeks tomorrow since his nurse took my blood.  They said tests will be ready in 10 days???  Why should I call him, isn't he suppossed to call me?  So, a bored front desk or nurse(not sure what) answered the phone and bothered to see if my tests came back.  I told her to fax everything to my PCP, since she didn't really want to give me much info over the phone, bec. "you have a bag of them", she said.  SO I asked her to at least tell me if lyme and co-infections were +, and she said some of the co-infections are + and Lyme is +.   I don't understand why no one called and I had to wait 13 days (instead of 10) to find this out? 

I have an appointment with my PCP tomorow for a physical and I will find out about the tests then.  Why should I go back to this guy, if he doesn't even bother to call me with my test results?  He ordered an MRI, but I don't even know if I should have it done now, because I really don't feel I should go back to him!  He kept pushing MS diagnosis on me, although my Lyme tests are +!  So, I didn't buy into the MS diagnosis and told him so and we had a match after that!

I have an appointment with an LLMD on Sept 16 and a schedualed MRI on Sept 10.  I will run out of abx before Spt 16, so hopefully my PCP will give me some tomorrow.  She gave me 4 wks of amox. when I saw her last month, based on my last results that were Lyme+ throughout 2009.

Am I being unresonable expecting the doctor to call me with the blood work results ASAP, especially when they are +? 

Post Edited (Simela) : 9/2/2010 12:38:00 PM (GMT-6)

Regular Member

Date Joined Aug 2010
Total Posts : 317
   Posted 9/2/2010 12:42 PM (GMT -7)   
Of course you're being unreasonable...somebody would have to get off their dead a** and actually do something. I only say that because our local clinic has gotten the same way. It's like pulling toenails to get something done there. I'm beginning to wonder if it's a trend???? "We're not here for the patients...just the paycheck" .....By this time I'd think you'd be thrilled to have the appt with the LLMD on the books for 9/16. Will the MRI cost you $$$? If so, my opinion is that I, personally, would wait to see what the LLMD wants....

Veteran Member

Date Joined Sep 2008
Total Posts : 1120
   Posted 9/2/2010 4:16 PM (GMT -7)   
From what I was told, if you have lesions on an MRI there is no way to know if they are from MS or Lyme. So, if you have a positive Lyme, why bother as they are very expensive. I had three MRIs with negavitve findings and then had a spect scan of the brain which showed neuro-toxicity. Spect scans are not available at all hospitals but they show the blood flow of the brain. D

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Date Joined Mar 2009
Total Posts : 2154
   Posted 9/2/2010 5:03 PM (GMT -7)   
I had MRI and had lesions on brain. Neurologist wanted to do spinal tap as did infectious disease dr. I have done alot of research which says it is not very accurate for lyme so i refused to have it. However, insurance company has refused me IV because I do not have positive spinal fluid. I would see LLMD first to see if they want it rather than waste your time. I now see LLMD who has been a godsend.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 9/2/2010 5:19 PM (GMT -7)   
Hi Simela!!
I would agree with what has been said here - wait & see what your LLMD wants you to do. If you can get your PCP to give you another script for abx, that would be really good as well!

I agree with Mamyou's assessment of doc's offices now days! She said toenails & I was thinking that it's like pulling teeth!!!
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Veteran Member

Date Joined Aug 2010
Total Posts : 552
   Posted 9/2/2010 7:14 PM (GMT -7)   
Thanks so much for your replies!
I actually made a mistake--the + lyme tests were throughout 2009 AND 2010.

The MRI will cost me $80 or more out of pocket. Then I will have to go to a neurologist, which will cost me another $40 out of pocket (my co-pay). My PCP costs me $20 out of pocket. Problem for me right now, is the expenses (especially if they are not necessary), but also the fact that the MRI may work against me with the insurance if it doesn't show anything? They may deny me treatement or may even say its all "in my head" or help the infectious disease doc diagnose me with MS and call it quits--this will not solve my lyme+coinfections diseases, so I am thorn on getting it or not.  If the LLMD finds it necessary, than I don't mind going to have it done, I just don't like wasting $$$.

Exactly my point: why have the mri if the tests are +? I think he said something about treating with Rocephin for the CNS IF neurologist sees it fit to do so. How long should I wait until I get some treatement? Waste of time and $$!  I don't even blame ONLY the docs--I think they are covering themselves and those tests are probably required by the Ins. companies, so that they find a reason NOT to pay for treatement.
What you are pointing out is what I am afraid I will run into. The testing probably won't stop here, the neurologist will ask for something, than they will go back and forward, instead of treating me. Yes, Spinal tap is not very accurate for lyme --that is my understanding also and I don't know why anyone would bother to do tests that are useless, but I think IF you get lucky and you get a + test, it is a big win over. What a shame this whole think is!

I will ask my PCP for more abx and to check my thyroid and adrenals.

Thanks so much!

Post Edited (Simela) : 9/2/2010 8:32:10 PM (GMT-6)

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