How many of you had a mainstream dr (not an llmd) know to test you for any co infections?

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  •  Me!!
    all of mine refused. In fact my old MD who just dismissed me, and told me I would be dead by now if I had babesia
  • The doctor that actually detected my lyme was an orthopedic. Although he diagnosed me, he also told my mom.that there is nothing he can do, and we need to find a good doctor ASAP. So, I’m thankful for him, esp because I grew up seeing doctor after doctor.
  • You can use my name, and none of them did….zero, zilth.
  • I did. The only reason I tested positive for Lyme after 5 tests was because I tested positive for Ehrlichia and I was still very ill after treatment for that, I was bitten 5 months earlier and only received antibiotics from myself getting them where I could unroll I got a diagnosis 5 months later
  • My primary care doctor originally diagnosed me positively with 3 bands of lyme disease. He didn’t bother to test for coinfections, and didn’t even want to prescribe me doxycycline. So much for their hippacratic oath!!
  • Oh. And he was an internist which is what I still see as my primary today and my LLMD is also an internal med dr
  • None. I had to beg for a Lyme test.
  • None
  • Zero
  •  My doctor had no idea!! He thought I was crazy! He said get out of the house, get a part time job. Oh really, I hardly had the energy just to get to his office! Ugh doctors need to be educated!!! When I was given my first blood test to check for lyme it came back cdc positive. I took that plus all my scary labs to my ex doctor. Maybe if someone comes in with my symptoms he’ll think to test for lyme.
  • None, I questioned, implied, coaxed and eventually begged to be tested for lyme but was denied repeatedly and made to feel foolish for asking.
  • My primary doctor refused, totally refused to test me…”you don’t have lymes, Lets try this…”
  • none
  • My endocrinologist tested me for Lyme & co. My PCP had done ELISA test, but that was it.
  • uhhhhhhh…..that’s a big ZERO!!!!!!!! assholes….sry, venting lol
  • None.
  • None
  • 0, they dont even know what they are or herxing or no gluten….the list just goes on.
  • Absolutely NONE! The one just said that it sounds like the symptoms of Bart, so that’s how he treated me.
  •  None and now that I’m getting better and informing them…some are very curious and want to know more others are, “oh, I’ll have to look into that” as they walk away! Grrr!
  • none
  •  0
  • zero
  • zero
  • My primary doctor tested for Lyme first, and later all coinfections. He was the one who suggested testing for Lyme, I had never read on it. I was one of the ignorant few who thought it was rare and quickly treated. He was the one who gave me the boo..
  • Pfft mainstream, what a joke in my life. Mine dx me with fibromyalgia, lupus, Ra, scleroderma, mctd, ddd, and laughed when I brought up Lyme. We don’t have it here u see. And if we did its hard to get and easy to treat
  • none
  • None!
  • Zero
  •  I’ve been tested neg for coinfections but llmd is treating me for babesia and bartonella because of symptoms. Says coinfection tests are even less accurate than lyme test.
  •  0
  •  0
  •  0
  •  One dr said to me, what the hell is that? when I asked him if I should be tested for Bartonella or Babesia.
  • None!!
  • Mine
  • None
  •  Zero
  •  The doctor that my kids and I are seeing now said, ” We need to test everyone for the follow Co-infections: Mycoplasma, CMV, Chlamydia Pneumonia, HHV-6, and EBV. If we test for these and they come back positive, we can treat for everything under these.” Testing for these is more accurate. The treatment for these is the same for Lyme, Bart, Babs…..but covered by insurance!!!
  •  none
  • NONE
  •  One tried, but the Infectious Disease Specialists at the Health region continually cancelled the test requests.
  • none
  •  None!
  • none
  • None
  • None
  •  None.
  •  zero
  • Not me.
  • not me!
  • 0
  • 0
  • I forced them to do that…
  • I learned from researching. We must use our resources to get what we need. The Docs don’t give any additional info. We have to ask for it.
  • None
  • None
  •  none
  • 3 eER MDS 4 RNS A RHEUMY 2 PCP S NOT ONE EVER HEARD OF BABESIA BART NOW THATS SCARY
  • None. They refused to do so, even when I asked. ‘there’s no Babesia in this country’ disbelief when I pointed one of his own patients had lab-confirmed babesia.’ Bartonella is a mild-self limiting illness he said, we mostly see it in AIDS patients’. From an Infectious Diseases consultant. Absolutely no idea….
  • same here Nicola with infec. disease dr got angry whn i asked to b tested for bart claimed i cldnt have it or id be ner dead well i was but anyway he did test reluctantly, swore id show neg. told me make bet id be neg. must knw abt the inconclusive testing lol i do have bart in fact that’s the one coinfection making me very ill




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11 thoughts on “How many of you had a mainstream dr (not an llmd) know to test you for any co infections?”

  1. While working in hospital on night shift, I thought I had a stroke when vision went blank on right eye, tachycardia, weakness, and numbness. Called supervisor and went to ER-dx. with ocular migraine (never experienced migraine in my life). Refered to Opthamalogist and Neurologist. No mention of Bb or other infections. I figured it out got quickest appointment with Critical Care ARNP-Western Blot(neg) and referal to Infections Disease MD. Went to ID associated with hospital I worked in with convincing sx. of Lyme repeated WB (neg) and later other testing including 1 for EBv (positive) Reorted to me I had mononucleosis and there was nothing to be done. Asked for monospot (neg). Somewhere MS was mentioned and I pressured ID for doxy script. Within 3 days felt some relief, yet ID doc would not tx. for Bb. Requested IgeneX(pos), about 3 weeks later after research….and hitting urgent care, ER, and another Neurologist. ID doc after earlier bet (cookies) welched on bet, tried to only give 2 weeks IV antibiotic-I requested at least 6 and he changed to 4 weeks IV via PICC. (Not covered by hospital employee insurance, and faught for disability coverage I paid into) Saved or rather used credit card for tick literate MD initial appointment. There properly tested for Babesia and Bartonella (both pos), reported to ID MD, who wanted to speak with Tick Literate MD. It was a head to head fight with all MDs, even in my compromised mental and physical state I detected from the majority MD’S, supervisor, and coworkers patronizing remarks and looks.

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  4. No regular doctors would even test me for Lyme, let alone co-infections. I live in Florida, they all said there is no Lyme in Florida. I went to several doctors…several different diagnosis. I finally got a lyme diagnosis, but my first LLMD didn’t even test for co-infections. It was 2 years later that the first LLMD sent me to another LLMD…finally I was tested for co-infections. It only took 10 years.

    Reply

  5. Over 12 mainstream doctors laughed me off. Wouldn’t even test me or consider it. It was all in my head. Lymes sufferer for 40 years now. This will sound crude… But I WISH I had cancer instead of lymes.
    Cancer patients know they will get help, compassion, lots of research, lots of options. They know they will either beat it or die.
    Lymes sufferers get none of that. Pathetically little research, hence no options. Glazed looks from friends rather than understanding. And it takes FOREVER for lymes to kill you.

    Reply

  6. I did. Well, after i went to ER and was dismissed with too much stress and just a bug bite, 5-6 months later I was dx by and Internal med Dr for Ehrlichia, then sent to ID and after 5 tests the fifth was the winning one! I treated those 5-6 months with abx myself that i found around the house and relatives houses just to survive because i knew I was sick with something from the bite. Now 5 1/2 years later, many single dose abx, 2 PICC Lines and after many many ID drs, specialists, and primary dr’s I am finally getting the proper treatment for Babesia that never showed up and several others.

    Reply

  7. I’m like BettyG, Iowa.

    After 36 years and countless doctors, NONE mentioned Lyme disease.

    It took a naturopath (Dr. Klassen in Aberdeen, Idaho) looking at my blood under blackfield microscopy to diagnose me. He said “You have spirochetes”, and I said “Spiro–what’s” A second doctor (Dr. West in Pocatello) confirmed it.

    Reply

  8. out of 35 yrs and 40-50 drs., NONE asked any of the following IF:

    .. i had a tick embedded;
    .. had a bulls-eye rash or any type of wierd rash;
    .. NEVER mentioned LYME disease at all.

    Reply

  9. I do dog rescue and was dealing with a dog hoarder in a rural area where I live. It was in the winter and I was crawling over fences and going through weeds, etc. I kept getting sick off and on for months. Finally, I went to my Dr. 3 times in June of this year. He said I had a viral infection and I needed to rest and drink lots of liquids. When I went on the 3rd visit, I saw the PA. She ordered blood work and on July 4th I was diagnosed with Lyme Disease and went on the 21 day regimen of Doxycycline. She walks on water for me because it was her insightfulness that finally found the cause of my sickness.

    Reply

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