Does anyone know the name of a Mayo Doc who prescribies A/P for Lyme? I know it sounds like a crazy question, but I need to know for another reason. Also, they say I have innflamatory Arthritis blah blah...so any help would be appreciated. I think you can send a private message. Thanks so much
Posted by Keebler (Member # 12673) on :
- The official stance of Mayo is that lyme does not exist or - in the very odd chance that it might - a few days' antibiotics should cure all that ails anyone.
They do not believe, and probably never will, in the idea of chronic stealth infection for lyme or other tick-borne diseases.
Mayo is NOT the place to go if you want to find the truth and it might be lyme.
Many lyme patients have been severely discounted, misdiagnosed - and worse - at MAYO. Some, even with the classic bulls-eye rash have been told "nothing wrong - maybe you just need to get a life." In some cases, steroids prescribed for misdiagnoses can cause lyme to become much worse.
I don't think the structure of MAYO even allows for an individual doctor to think for him or herself. For many clinics, they are PAID TO NOT CONSIDER LYME. If they even test, they can be fined by insurance companies. If they've not not order any lyme tests or made any lyme diagnoses, bonuses are frequently the reward.
Seriously, this happens all over the country. The insurance companies just don't want to pay and the IDSA is very firm to keep doctors towing the line.
Have you been diagnosed ? If so, whichever doctor dx you, is it not possible to get treatment from that doctor ?
If you have not yet been dx, in addition to being assessed for lyme, there are also other tick borne (Babesia, Anaplasma / Ehrlichia, Bartonella, etc.) - and other chronic "stealth" infections (HHV-6; mycoplasma pneumonia, Cpn, etc.) that most good lyme literate MD also consider.
California Lyme Support Group - great site for anyone in any state. Many detailed links. -
[ 10-02-2011, 06:06 PM: Message edited by: Keebler ]
Posted by bcb1200 (Member # 25745) on :
Keebler...very good to hear from you!
Posted by Keebler (Member # 12673) on :
- I see that you posted last June to find a LLMD and that two replies were sent to you. It does not sound like you found a doctor yet so I sure hope you can find one soon.
Now, if you did find a LLMD but can't cover the cost (as most insurance companies will not cover care), you might ask your LLMD if he or she knows of any other MDs or DOs who just might be open enough, brave enough and in the position to treat you to some degree.
Other lyme patients are also a great resource. Be sure to connect to the support groups within a hundred mile radius, or so.
There are also some complementary methods that you might consider. Freeze dried garlic, etc. ?
Good luck. -
Posted by Razzle (Member # 30398) on :
The modus operendi of Mayo is everyone with any health symptom is "loco" (nuts, crazy, a head-case...call it what you want...) until their own in-house tests prove otherwise beyond the shadow of a doubt. I got this from someone who knew the founders of Mayo Clinic.
I went to Mayo in 2004 (before I knew about Lyme). Waste of $$, time, and energy. They told me to be a nice patient and take my antidepressants - even though their own tests did NOT show me to be depressed! They told me I have IBS (and I did NOT have ANY symptoms consistant with it). And they told me I had Somatoform Disorder (if you read the DSM description of this disorder, every female on the face of the planet would qualify). Oh, and they told me I had pelvic dyssynergia - which was the only correct thing they told me - and which was actually diagnosed by a local doctor before I went to Mayo...so thanks for nuthin' Mayo!
Ironically, in 2008, a local hospital sent my blood to Mayo for a Lyme test, which came back CDC positive for Lyme! I did not know it was being sent to Mayo until I got a copy of the results from the ID doc (who of course told me it was a false positive, because it was cross-reacting with something else...when asked what it was cross-reacting with, he couldn't tell me).
If you have arthritis, it may behoove you to look up roadback.org and find someone near you who believes in antibiotic treatment for arthritis.
Posted by Keebler (Member # 12673) on :
- Razzle;s suggestion for the Road Back Foundation is a good one, particularly since they have helped MANY with the diagnosis of "arthritis" - (even iwhen the cause is lyme) so I think that might be your most likely approach.
Not sure how each doctor who works with that plan would consider other tick-borne infections but be sure to ask as some others would require different medicines, not antibiotics.
You might also try to find a doctor who will assess &/or treat Cpn (Chlamydia pneumonia). Many with lyme also have Cpn and the treatment courses are similar.
Also some who think they may have lyme, could have Cpn instead. Doctors who recognize chronic Cpn are also rare but you might have better luck on that avenue.
Many with lyme also have HHV-6. It can also mimic lyme. Doctors who understand the chronic nature of HHV-6 may be more open minded and also more likely to know something about chronic lyme.
Reactive Arthritis: Reactive arthritis is thought to occur in 2 to 15 percent of Salmonella patients. Symptoms include inflammation of the joints, eyes, or reproductive or urinary organs. On average, symptoms appear 18 days after infection.
Focal Infection: A focal infection occurs when Salmonella bacteria takes root in body tissue and causes illnesses such as arthritis or endocartitis. It is caused by typhoidal Salmonella only.
. . . Unfortunately, treatment of Salmonella has become more difficult as it has become more resistant to antibiotics. Finding the right antibiotic for a case of Salmonella is crucial to treating this bacterial infection. . . .
====
Google Search: chronic+salmonella -
Posted by Neil M Martin (Member # 2357) on :
Thanks, Keebler.
You would think there would be identified sub-specialists in infectious diseases: Non-AIDS STDs, AIDs/HIV, parasites, tropical diseases, neonatal diseases, diseases of the digestive tract. Etc.
But who in large hospitals and treatment centers like Mayo affirms Lyme disease or vector borne diseases as a subspecialty? Here in Tucson the Univ of AZ Med school has an infectious disease post Doctoral program. Table of contents in its syllabus highlights major sections of study. NOT there: tick borne / vector borne diseases.
As if those are not important.
A patient with active, refractory Lyme enters the center; Mayo or wherever. Disabled and/or in Medicare, they require a diagnosis for admit. Medicare pays hospitals prescribed fees for limited days, per "Diagnostic Related Groups" in a Manual. Lyme disease was not in the last DRG I checked. (Try to find a DRG or try understnd it, if you like brain teasers.)
The Admit clerk seeks a similar diagnosis. All lightweights with short stays. Inpatient treatment lasts discharged home or nursing home, but if that is past the due date, the hospital is not paid for the extra days. Incentive?
According to a diagnosing physician from a small community out of state, the ER patient has active Lyme that requires extended, symptom based treatments, perhaps with IV antibiotics.
The Infectious Disease Section Chief is called. His assessment trumps the other doctor. Dr. IDSA oversees the selection and education of post Doc. MD grads seeking IDSA credentials. Dr. ID has acedemic credentials, is published, is respected and polished. He trumps.
Why would a hospital admit a patient with a IDSA-censored diagnosis that is non DRG-recognized, and IDSA spurned? HHS.gov and CDC.gov tell what Medicare thinks about "active" Lyme disease. The admit clerk has to consider job status. Dr. IDSA knows where his bread gets buttered.
A staff psychiatrist sees the Lyme patient, who is released, too weak to drive. I've seen it.
Lyme-Mayo horror stories abound. I have yet to read one positive. If you know different, please email me. Include the diagnosing and treating Dr's name. All the Lymite Mayo blogs I read have a comon theme: NIGHTMARE. The one below speaks elloquently. (I edited its paragraphs to shorten them.) -------------------------------------------
I'm here to help raise awareness of a potentially serious disease if not diagnosed and treated early � Lyme disease.
In 1984 two of my children contracted Lyme disease. Although the first pediatrician dismissed the strange rash as a viral infection the second one did not. She excitedly recognized the symptoms and clinically diagnosed Lyme disease. She had just attended a lecture on Lyme disease. Their symptoms were recognized and they were treated early and aggressively. Little did I know then how devastating this could have been.
Unfortunately I am a victim of Lyme disease and other tick-borne diseases. I am also a victim of a medical establishment that is reluctant to test or treat these diseases. I believe I contracted Lyme disease while hiking in the Delaware Water Gap, although that will never be known. Once an active person who could hike strenuous hikes I began to notice my health deteriorating. Eventually on my worst days it became difficult just to walk to the mailbox.
In the beginning of my illness, my symptoms were drenching night sweats, flu-like symptoms, excruciating headaches with neck stiffness, whole body aches and pains especially my knees. As the disease progressed it became a myriad of symptoms affecting one part of my body one day and a different part of my body the next. At one point my daughter frustratingly exclaimed "Your symptoms are all over the place."
I have since learned Lyme disease is a multi-system, multi-syrnptom disease. It affected my hearing, my vision, headaches so excruciating I thought it had to be a brain tumor. A headache that severe couldn't possibly be anything else. Severe stomach pain would bring me to the floor in sheer agony. My heart would race uncontrollably while lying in bed. I became "lost" in a store that I was very familiar with. At times my legs felt like they were going to give out on me -sending me to a chair. I would describe it "like a wobbly baby calf" I would wake up mornings where the pain in the muscle of my arms was so severe I couldn't lift them, we would try resting them in a sling and people would ask "Did you sleep on it wrong?"
I became so neurologically impaired there began to be days where I couldn't drive. I would have bouts where I couldn't catch my breath. Air hunger would bring me collapsing to the floor, especially after a shower. The fatigue was so extreme -I felt as though I could just collapse.
With this myriad of symptoms I found myself running from doctor to doctor. For almost 2 years it seemed as if I had a doctor appointment each week. I was determined to find out what it was that was causing my illness. An illness so severe I went to the emergency room on 4 different occasions -only to be told that I was fine and I was sent on my way. I saw over 20 doctors "specialists" -neurologists, gastroenterologists, urologists, cardiologists, rheumatologists, ophthalmologists, endocrinologists, etc. I endured test after test � Numerous MRI's -EKG's, EEG's, endoscopy's, colonoscopies, a spinal tap, etc.
I was poked, prodded, analyzed~ I felt as if I was everything but dissected. Test after test revealed nothing -absolutely nothing. At this point I requested a PET scan -"There was something wrong with me and no one could figure it out." So I asked my neurologist at the time to order a PET scan. He was reluctant so I was adamant. It was at this point where I was told that I was going to need psychological help. I told him that if he were as sick as I was he would not be sitting behind his desk at work. He ordered the PET scan and that too revealed nothing.
At a loss and feeling so desperate and sicker by the day I made appointments to top hospitals, over 5 top hospitals. I went to Columbia Presbyterian in NYC, Sloan Kettering in NYC, University of PA in Philadelphia, Hackensack Memorial in NJ, Robert Wood Johnson in NJ. All to no avail, No diagnosis!
After my visit to Columbia Presbyterian in NYC I continued to have excruciating stomach pain. I called numerous times and finally got a phone call back only to be asked "Did you try Tylenol?" At my visit to U-Penn in Philadelphia I was prescribed Prednisone (a steroid) for my excruciating headaches and brain fog. I emailed the doctor and told him I was worse and further studies needed to be done. He emailed back and told me "no further studies needed to be done." Steroids are the worse things ever for Lyme disease � they suppress the immune system. I followed my instincts and quit taking the prescription.
The prescription of choice seemed to be antidepressants. As you saw in the movie, I too have a giant bag of useless prescriptions. Many prescriptions I never filled clearly knowing they would do NOTHING! It was at this point where I knew I had to make an appointment at a "top diagnostic hospital." I went to the Mayo Clinic in Jacksonville, Fla. twice-each time we spent two weeks there.
I was put on the Mayo Diet (as they call it) numerous times and run through the Mayo Gauntlet of testing. That too revealed nothing. I boarded a plane home after the 4th week spent there believing I was going home to die. Where could I possibly go from here?
I was finally diagnosed by my sister's neighbor � a retired Johns Hopkins nurse. My sister told her my symptoms. She exclaimed "That's Lyme Disease." My sister went home and started researching the internet. I told her I was already tested for Lyme disease and the tests were negative � further research revealed that the tests are terrible and I had every symptom of Lyme disease.
The Mayo Clinic's website states that Lyme disease is "over diagnosed". I beg to differ.
As difficult as it was to get a diagnosis, I was soon finding out that it was going to be just as difficult to find a Lyme-literate Doctor. My first round of treatment was 56 days of IV antibiotics along with orals. I was going to The Tick Borne Disease Group in Phillipsburg, NJ. Shortly after the pic-line was pulled out and the treatment stopped, my symptoms that had somewhat subsided were back with a vengeance.
Calls to The Tick Borne Disease Group were fruitless -they had been shut down. After this I saw 3 doctors who clearly were not going to get me well.
I was now more knowledgeable as to the politics and corruption surrounding this disease and I began my own homework on the internet. Through phone calls I was directed to Dr. Gregory Bach by a nurse. Dr. Bach had treated her whole family and had gotten all of them well again. And HE is the reason that I am well enough to be able to be here today. Lyme disease is one hell of a battle -a battle to get a diagnosis, a battle to fight the disease, a battle to get your insurance company to pay for your treatment, and a battle to get the medical establishment to recognize and treat this disease -as the very serious disease that it is.
Unfortunately my story is not unique. Stories just like mine are repeated over and over on the internet and something seriously needs to be done.
Thank you for coming and showing your support. Together we will make a difference.
Joy Mandrell Burdge
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by dcpb1: Does anyone know the name of a Mayo Doc who prescribies A/P for Lyme? I know it sounds like a crazy question, but I need to know for another reason.
- I doubt seriously if that person exists. Sending PM.
Posted by seekhelp (Member # 15067) on :
Keebler is back!!!!! Holy guacamole with a capital green G. Posted by nefferdun (Member # 20157) on :
Yeah, Keebler is back!! I thought this must be some old post brought back up again and kept re-examining the date. Nope. Keebler - and Razzle (don't remember seeing you in a long time either).
I don't know about the Mayo Clinic. I was hoping when I brought this up to read that maybe they were changing their stance.
As for the RA, many autoimmune diseases are helped by low dose naltrexone and it is also very helpful for lyme disease:
The concensus is "HOLD THE MAYO!!".
Posted by dcpb1 (Member # 32332) on :
Thank you to everyone's generous replies. I have an LLMD-- Lyme plus mycoplasm. Am on Abx treatment for 5 months, have been to the nightmare of the Mayo, but need a doc there who will at least admit to abx therapy, but not to actually go there except for that. But I understand, they are not going to go there I guess. I need the info for another reason, not to treat permanently there.
Posted by Lymetoo (Member # 743) on :
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