My healthcare people want to try the Mayo Clinic as a last resort since they've done all they can. I was diagnosed and treated with 3 different oral antibiotics 4 years ago. Coasted for a bit. Been getting worse the last 18 months. My Labcorp IgM results are high.
I've read they really suck with Lyme disease. In fact you hear "Hold the Mayo" w LD patients. They won't diagnose chronic Lyme and will try lots of other testing. Its said they could be the kiss of death for further pursuit of a Chronic LD diagnosis if they say you are negative or give you a CFS dx, for example. And I wonder if my people are shunting me there to get them off their hands, before I visit the looney bin.
I live in a state with one or two LLMDs and they are not covered by my insurance
Any comments?
-------------------- Dx NY 2008 - Rash, headaches, neuro Doxy 400mg/day 6 wks, Amoxy, Zithro Herbs, supplements, sauna/steam room (1 yr), Rife, H2O2 Neuro symptoms for 3 years. Now inc CFS, FM and arthritis IgM+ (recent LabCorp) Posts: 19 | From Flagstaff, AZ | Registered: Oct 2012
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posted
Avoid the Mayo Clinic. I went there...zero help or recognition for what was making me so sick-i.e., lyme and coinfections. You can PM for more info. STAY AWAY FROM THERE PLEASE! Jess.
Posts: 651 | From ct | Registered: Sep 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
People from my town have gone there as a last resort for Lyme...forget it...it will be more stress, money and more stress...perhaps worse off than when you started even...lying out in the Arizona sunshine would be more of a health benefit than going to the Mayo Clinic.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Do a search of the archives using the word Mayo and you will get an earful.
All bad.
Posts: 2888 | From USA | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Oh no....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Absolutely, NOT. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you think you have no options for LL doctors, then it's time to take matter into your own hands.
There are ways you can do the best you can without a LLMD, too. Mayo is never an option for anyone with lyme. Ever. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I mentioned that if there is no way you can get a LL doctor, it's time to take matters into your own hands. Many of the books and articles here can help you figure out a way to do the best you can for yourself, even without a LL doctor.
Now, it's not the best way to proceed, on one's own but if you have no way to see a LL doctor, then some information here can help.
I see, though, that you list herbs and supplements as part of your treatment.
Were those selected by a LL ND? The reason I ask is that there are key herbs that more specific and some herbs that are just support, having no actual effect on infection. Details in the works below.
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
Topic: RIFE Machine - Reference LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Backing up, I see you say that you were:
"diagnosed and treated with 3 different oral antibiotics 4 years ago." (end quote).
In one of the links sets here (either above post or the link below), see Burrascano's treatment guidelines.
If your past treatment of what sounds like just within one year's time frame did not follow this to a large degree, that explains why your "healthcare people" are not really your healthcare people at all.
While it may not change the accessibility issue for you, it's vital to know that it can take many months to many years to achieve remission.
There may also be some overlooked tests. See TIMACA's thread within this one:
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Nooooooooooo!!!! Stay away from Mayo!!! Disasterous place for those of us who want to know for real what is going on for us!!! Terrible place!!!
Can you tell I had a horrible experience there, LOL????
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Mayo was unable to diagnose me. They told me that I was "too sick", my case was "too complicated", and their doctors were "not experienced enough" to diagnose or treat me!
I had already been to Cleveland Clinic and they had basically told me the same thing. So imagine how I felt, the two places of last resort told me that I was beyond help.
Don't go there. They are only good at diagnosing and treating simple things. Things that they know. If you have a rare or complex case, they will not know how to care for you.
It's best to find some local docs that are not afraid to try to help, that are willing to learn, and actually work to find some answers. It's hard finding doctors that are able and willing to help. There are not many out there. Hold on tight to the one that you have. Or keeps searching.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I even know those with Sjogren's that Mayo could not/would not help.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Are you convinced now?? I think so!
If there is any way that you could beg or borrow to see a good LLMD and get the best treatment, that would be best. If not, there are some that take insurance, albeit not many, I would guess. Otherwise, it's what Keebler said.
Posts: 3792 | From around | Registered: Mar 2008
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Oh please. I could tell you a story about my friend who went there.
They are FABULOUS when it comes to diagnosing you with fibro and/or MS.
And according to my friend they have an immaculately clean facility.
Too bad all those cleansers rinsed their brains of logic.
Posts: 1885 | From here | Registered: Jul 2012
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My Nurse Practitioner is going to flip when I show this and probably give up on me.
-------------------- Dx NY 2008 - Rash, headaches, neuro Doxy 400mg/day 6 wks, Amoxy, Zithro Herbs, supplements, sauna/steam room (1 yr), Rife, H2O2 Neuro symptoms for 3 years. Now inc CFS, FM and arthritis IgM+ (recent LabCorp) Posts: 19 | From Flagstaff, AZ | Registered: Oct 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No need to "get back to me." Questions posted were for YOU - just for your check list.
I have to say, though, this comment seems telling. You say: "My Nurse Practitioner is going to flip when I show this and probably give up on me." (end quote)
Then you have the wrong, wrong, wrong NP. Sounds not LL at all as these questions that we pose here are very basic and would never throw any true LL practitioner.
Good luck. -
[ 10-07-2012, 05:15 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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