posted
Where should I start with my new Infectious disease Dr. Tomorrow. My other IDS Dr that I was refered to has only ran CMV and EBV test showing that I have an active infection, and has put be on 28 doxy 100mg 2x daily all of Oct then I had another deer tick on me so she did another 28 days in Nov same regiment. Still feel like crap running low grade fever occasionally. What questions should I have for new Dr and more specifically what test should I insist on.
I have all the symtoms/issues listed.
1. testing positive for active CMV (cytomeglavirus) 2. Positive for EBV (ebstein barr virus) 3. Positive H pylori 4. months ago tested positive for RMSF (rocky mt spotted fever after running fever for 2 weeks straight) 5. 4 months ago tested positive for rickettsia ricketsii IgG and IgM. 6. 4 months ago tested poitive for borrelia burgdoferi Ab. 7. Have elevated liver enzymes and enlarged liver. 8. ANA tested positive 1:80 9. I have all the body aches and headaches, neck pain and cramping along with stomach nausea and airy feeling of never being full in stomach. 10. Gastro also went down my throught to check my stomach and found diffuse inflammation, moderate severity, in the entire stomach. Dr favors chronic gastritis. 11. Basically have all the lyme symtoms. 12. I am exhausted and tired of being sick.
Posts: 12 | From Fayetteville NC | Registered: Nov 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I am sorry to hear that you have an appointment tomorrow with a ID doctor (Infectious Disease).
I wish you had more time to study the options.
Don't get your hopes up. Most ID doctors are pretty much the same and follow very simple paths. Most actually discount chronic infections.
My first question is that if you, as stated in #6 above, actually tested positive for Bb (borrelia),
-- sorry, my eyes just spazed out. I can't finish reading as it all just blurs together.
Seems, though that you don't have the medical care you need but a regular ID doctor won't provide it, either. Not in 99% of the cases.
Best to find an ILADS-educated Lyme Literate MD. (LLMD).
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
As Keebler said, you need to get familiar with the politics surrounding Lyme. You will not get adequate treatment from an ID doctor.
Under Our Skin is an informative movie available on Netflix and Hulu.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- rsekrecre1,
I was not questioning if you tested positive but I just could not finish my sentence.
---------------
To prepare, in case the new ID doc rolls off the common statements:
1) Nine out of 10 ID doctors discount any positive test. They may want you to do a "lumber puncture" test (also called a spinal tap).
This is not necessary and is a very bad test for lyme. (Yes, it can help with other things but you already KNOW you have certain infections and the treatment has not been adequate).
2) Also, if they suggest steroids, run, run, run away. Unless life threatening reasons, steroids should be avoided and can make lyme much worse.
3) Lyme does not just burn itself out either, as so many doctors love to suggest.
-----------
Now, the ID doc may consider other things but you are not being adequately treated for any of the infections. A single antibiotic is also just not enough for any of the bacterial infections.
Doxy turns lyme into the cyst form. It's important to then add flagyl to address that form.
Even then, 200 mg of doxy a day is far below the adequate amount.
Not sure what the best treatment for RMSF is but see the ILADS guidelines for reference.
Antibiotics do not work with CMV or EBV.
I hope you can find a LLMD.
Good luck. Hold on for the ride. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
You tested positive for B. burgdoferi(that's lyme).
It's highly unlikely you had a false positive...doesn't happen.....false negative, yes.
I saw 6 ID's and had all the positives you have, plus more. Not one was willing to put me on more than a month cycle of doxy at 200mg/day. That isn't enough.
Please don't waste your time or money. Get to an LLMD.
I know it's hard to believe that the system can be so cruel, but this illness has slipped through the medical school cracks.
Posts: 147 | From youngstown | Registered: Oct 2011
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posted
An Infectious Disease doctor gave me such a great first impression. He seemed lyme-literate to me.
Before my second appointment, he basically hung up on my when reading my blood test results over the phone. He refused to acknowledge positive bands for lyme and coinfections, and insisted that they could have NOTHING to do with my symptoms.
I will likely never step foot in an ID office again, and I steer people away every chance I get (when lyme is the most likely culprit).
It's a waste of time, in my opinion, to go to an ID doctor. It doesn't matter how "positive" your tests are, anyway...he or she won't treat the disease properly.
Posts: 114 | From NY | Registered: Jul 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Once in a Blue Moon, there will be a good ID doctor who may also be a LLMD. Once in a very Blue Moon. And I hope there will be more.
rsekrecre1,
How did your appointment go? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Just to get started,until you can get to a LLMD. Say symptoms ,don;t diagnose self.. They hate that.
Maybe mention you get fevers that just kinda come from no where once in a while . If your sick that is probably happening a little just not their numbers.
I've been through 7 ID doc's, at least. Even asked to be tested for Malaria/syphilis and anything in that arena ....to get their mind on Spirochetes.
I mentioned some travel and being exposed to a sick person...Really pushed the I'm weak/tired, even after sleep and body pain. Also whatever is bothering you the most right now. Seemed like lots of sinus pressure that won't break up...
Script for 3 weeks Doxy. Still took several years to get some where and a diagnoses.
Just before that I had a Pulmonary doc who knew I was sick tested me for Brucellosis ,came out positive twice, but even before that, I mentioned to him that On Zith or doxy that I could breath better and off thing's went down hill fast..which is /was true.
So he treated me on going zith as I kept looking for answers. Then I changed Ins. He wrote script to get me by for 6 month's. What a God send.
All true just not giving away bits and pieces that red flag....
Use slightly different wording ... Let him know you are looking to him for help, but really need some now relief and not there (this time ) to tell him his job..
You just might find someone who's been reading a bit and will kinda put a little of this together.
If you get the let's go to antibiotics after blood draw. Ask big and nice and big, To Have them take it(blood) then and ask for script to start for few weeks until some results come back. Just so you don't get sicker or have a sinus or ear infection get out of hand.
Bending not lying if have to.
I just pray you get someone who is not stuck in a box.
But few and far between. Blessing's. Nonna
OH! leave the big emotions at home, you'll be in a box in 2 seconds if you don't.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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