Can you still have lyme if you've been on a multitude of antibiotics?

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pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 3/20/2010 9:19 PM (GMT -6)   
Hi everyone - I'm very new here and don't know what I have.  Well that's not entirely true, I do know I have Interstitial Cystitis, Pelvic Floor Dysfunction, IBS, Vulvodynia and Gastric Ulcers among a few other things.  Recently (especially the past 2 months) I've been "spriling downhill fast" in the words of my urologist and have an appointment with a rheumatologist scheduled and will be tested for Lyme next week (after the suggestion of 3 different doctors) I just don't think I was bitten...no rash...no itchiness...no nothing.  But I have TONS of symptoms so really it could be anything (Fibro, MS, Lupus are just a few they mentioned).
 
In any case since January I've been treated with strong Augmentin for a "Sinus infection", Levaquin for a "UTI", macrobid for a "Kidney infection" and augmentin again for another "sinus infection" that hasn't gone away.  All of these are in quotes because my WBC has been through the roof and I've had symptoms and fevers but I'm not sure that's what I've had at all.  In any case...is there anyway that I could have been on all of these antibiotics and took all (of most of them) and not have gotten rid of this...or should they have knocked it out of me so Lyme doesn't make sense?  I'm just feeling worse, not better.
 
Any input would be helpful and thank you in advance :)

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/20/2010 9:57 PM (GMT -6)   
Hey Pennstate ...welcome..do you live in Pennsylvania?

from what I have seen here the testing is most important and if you are a long time unknown lyme person I think it
is really important WHO tests you and WHO looks at you for clinical diagnosis.

but other people know more technical than me about all of this. If you want the name of my doctor you can email me.
This is not the doctor I am being treated by but the one who diagnosed me and origionally tested me. She was brilliant and also had the integrity to tell me that she could not treat me because I needed IV and she doesn't do IV but the way she tested me was very specific because I didn't get bit recently .. so if it is very old which it may be for you too and maybe even other antibiotic treatment can get in way of right blood results ?????myabe?? other people know more about that.
but if you click the envelope you can email me.

good luck to you




I just see how important the blood work is for insurance and right treatment and picking up the coinfections and all other viruses.
hep c , lyme
Dad has lyme


pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 3/20/2010 10:16 PM (GMT -6)   
Hi Bucci - I actually do live in PA - central PA now but occassionally work out of Philly and have a Urologist at Penn. I live near Hershey Med but this week I think the testing is just being done by Quest Diagnostics? I am not 100 percent sure as I have to call Monday. The rest of my doctors are at Hershey Med and Penn...and actually my Urologist at Hershey Med got to the point she just told me to come into the ER because trying to get in an appointment everywhere was taking too long...I didn't listen to her but maybe I should have. I will be back on once I get the initial testing, but my guess is if that initial test comes back positive they'll send me to Hershey Med for IV since I'm in so much pain and its been getting worse going on 3 months now....I guess we'll see but I really appreciate your in put and if you're near any of those places let me know and I would be interested to hear who your doctor is!

Thanks so much...

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 3/20/2010 10:37 PM (GMT -6)   
The Lyme test may not tell you much if you are taking antibiotics when you get tested...

Also, the Lyme tests done by standard labs like Quest omit some of the Lyme-specific bands and thus are not nearly as accurate as labs that specialize in TBI (Tick-borne illness) testing...such as IGeneX (in Palo Alto, CA) or Clongen (I think they're in New Jersey...).

And most MD's don't know how to properly interpret lyme test results...so it is best to consult a Lyme-Literate Physician or Naturopath.

Be sure to check out the thread at the top of the forum titled, "New To Lyme?.......Start Here!"

Good luck,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 3/21/2010 9:24 AM (GMT -6)   
Razzle - A naturopath - I didn't think about that in relation to the tests? There's a Naturopathic Doctor near me I've been waiting to see...unfortunately in PA they don't recognize them as doctors in PA, so I'm saving up (between all these specialists and PT, I can't afford the first two visits to her! grr). I didn't think about them knowing about this as well....that's really interesting. I think after my rheumy visit, I'm going to have to make it a priority to see her....especially because I don't eat red meat....well most any meat but seafood (just don't like it) and the diets for a few of my diseases are so specific I really can't eat anything but celery if I follow them all, haha. I'm really glad you mentioned that....as well as the guidance on the testing. I'm not sure what to do...as now I feel like even if it comes back "negative" it may not be really as you said.

All these diseases are so confusing and frustrating! Plus you start with one and seems like they keep piling on....

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/21/2010 10:01 AM (GMT -6)   
hey penn

if you go to thelymebook.com you will find some books.

a great one and new is Insights into Lyme

13 doctors insights into lyme treatment.

also this book may have listing of docs too?

but you can get a better idea of what is really going on in lyme treatment world
hep c , lyme
Dad has lyme

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