After being in and out of the hospital and hearing everything I was told I would hear, my GP would like me to go to the Mayo Clinic in Rochester, Minnesota.
I researched somewhat and they do have a Dr. under Neuro that lists Lupus (I was dx in the past, but now in remission??) and Lyme among others.
I did not see a LLMD listed.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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posted
I wouldn't go, they are going to tell you you have anything and everything but lyme disease. I just don't trust many doctors anymore after getting lyme. I know it isn't their fault and they are being mislead, but it just still aggravates me that they can't be open to suggestions. I was undiagnosed for 20 years, and still receiving flack that I don't have lyme, and it can't be chronic....blah, blah, blah
Posts: 893 | From Florida | Registered: Dec 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hold the Mayo!
Seriously, I have not heard anything vaguely Lyme-Literate about Mayo.
What about finding an LLMD near you? Any chance of that?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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onbam
Unregistered
posted
Per my LLMD:
If a doc at Mayo diagnoses Lyme, they get fired.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
onbam......I believe it!
My cousin, who has very obvious lyme symptoms and lives on 200 acres of wooded land went to Mayo. They diagnosed him with a rare genetic disorder, and told him it would clear up on its own in 2 years. He has now been sick for a year and a half and gradually getting worse.
I told my husband to never send me to Mayo, no matter WHAT is wrong with me.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
As cactus said... HOLD THE MAYO!!!
Run, run as fast as you can... in the other direction!
We've only ever seen ONE person (who came here briefly) that was actually diagnosed with Lyme.... and left without any treatment for it.
Their LONG history of not recognizing Lyme and coinfections encompasses many years and many patients... and comes from the main HOLD THE MAYO clinic and their satellite.
Think about it.. if you have Lyme and/or coinfections and they say you don't...
What doctor anywhere will stand up against their opinion to help you, knowing the HOLD THE MAYO clinic said you didn't have it?
I am sure insurance companies love the HOLD THE MAYO clinic... it saves them BIG bucks!
posted
NO, NO, NO!! You will come home VERY angry and without any help! They will dx you with some rare disease for which there is no treatment. Thus, they will write you off.
Mayo has said they "don't do Lyme."
That place is full of losers when it comes to diagnosing Lyme disease.
So, unless you think you have some rare disease, forget about it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Don't do it.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No. No. No. No. Do not go. Mayo is very ignorant about lyme and other tick-borne infections. VERY ignorant. They have medically and financially abused MANY lyme patients.
Get to an ILADS-educated LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
hold the mayo !
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I have watched several patients make the long and costly trek to the Mayo clinic, only to be told there is "nothing wrong with you." Why take that kind of abuse?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also the travel, lodging and co-pay part that medicare would not pay would be MUCH more than seeing a LLMD. Medicaid (as the co-pay) does not travel state to state and you would be responsible for that part yourself. Medicare does not cover all tests and consults, either. You would be responsible for any testing medicare does not cover - which can really add up.
But the fact remains: they are absolutely dangerous in their ignorance regarding tick-borne infections. You know you have lyme so most of the tests that Mayo would do would be far less conclusive than that. You already know you have lyme. See a Lyme Literate specialist. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I wouldn't go there for Lyme. I went there six months after getting sick. I still had a huge bullseye rash on the top of my right foot.
I was there for a week and a half. In the end they told me I either had an unknown virus, or some virus had wiped out my immune system.
Either way they said they couldn't help me and to go home and hope that it went away in a couple years. I always wondered why they said years????
If they would have just caught the Lyme back then and treated me correctly for Lyme I would not be so sick today.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
DO NOT GO TO MAYO!!!! You will not get ANY answers, only MORE problems and aggravations.
My very good friend wasted time, money, and good faith by going there. She only added more frustration and anger to her full plate of dx's.
She had to DEMAND certain tests; she was lied to; she was told she was delusional, even though she took loads of paperwork from other doctors with multiple verified dx's. She went to Mayo to get well. Why else would she go halfway across the country, leaving her family for at least 2 weeks?
She was smart enough to demand her medical records from Mayo before leaving ------- only to find out some of the Mayo doctors didn't even reveal her TRUE test results while she was there!
It's UNBELIEVABLE that Mayo can operate like this. I'm sure they are successful in treating some patients, but I guarantee they have nothing that is Lyme-related...........or that's what they are TOLD.
I've probably said too much already, but based on her experiences there and other stories I've heard, you couldn't pay me to go there. I've been through enough hell here in my own city at one of the "greatest" medical centers in the country! (I DO have some FANTASTIC doctors here, however!!!)
I'm stepping off my soapbox now before I get in trouble.
Take care of yourself by NOT going to Mayo, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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Consuela... We are being protective of you because we've heard plenty of horror stories of Lymenetters (and others) who have gone to Mayo and come back angry, discouraged, and feeling hopeless.
They would have saved a lot of time and money by just going to an LLMD and being properly taken care of. That is what we want for you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Mayo is 1 1/2 hours from my house. I have had several friends with lyme go there for lyme and other issues and they tell you it is impossible. If you go there for other lyme related issues (like inter cranial pressure) they will help you for that, but tell you that you need a psychiatrist because of your delusions about Lyme. If they don't ignore the issue completely.
No. Don't go.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
We had an ID doctor here insist on sending bloodwork to the Mayo Clinic for Lyme testing (Western Blot)... it came back negative even though one month earlier we had it sent to Igenex and it came back CDC and Igenex positive with 6 bands.
Our ID doc told us Mayo had more specific Assays than Igenex.. whatever that means. In any case even he ended up trusting the Igenex results and said he couldn't dismiss such a strong positive.
quote:Originally posted by aiden424: [QB] I wouldn't go there for Lyme. I went there six months after getting sick. I still had a huge bullseye rash on the top of my right foot.
I was there for a week and a half. In the end they told me I either had an unknown virus, or some virus had wiped out my immune system.
Either way they said they couldn't help me and to go home and hope that it went away in a couple years. I always wondered why they said years????
Can you believe they are that stupid?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by lululymemom: [QB] We had an ID doctor here insist on sending bloodwork to the Mayo Clinic for Lyme testing (Western Blot)... it came back negative even though one month earlier we had it sent to Igenex and it came back CDC and Igenex positive with 6 bands.
Our ID doc told us Mayo had more specific Assays than Igenex.. whatever that means. In any case even he ended up trusting the Igenex results and said he couldn't dismiss such a strong positive.
VERY interesting! Thanks for sharing that! An ID duck who believes in Igenex... priceless!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by peacemama: Mayo is 1 1/2 hours from my house. I have had several friends with lyme go there for lyme and other issues and they tell you it is impossible. If you go there for other lyme related issues (like inter cranial pressure) they will help you for that, but tell you that you need a psychiatrist because of your delusions about Lyme. If they don't ignore the issue completely.
No. Don't go.
peacemamma,
Mayo in Rochester is not a good place for pseudo-tumor cerebri (intracranial pressure). My kids neurosurgeon consulted with doctors at Mayo and he was told that they couldn't do anything for them. I know several people who went to Mayo for PTC and the were treated the same way as Lyme patients.
Mayo is great for other health issues like cancer and heart problems.
We could get to Mayo in less than 2 hours each way. We drive 10 hours each way to see our LLMD.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
When my daughter was first diagnosed, we didnt know what to do or where to go. All we had heard was MAYO was the best around.
My husband knew some people who pulled some strings for us and helped us by-pass the 4 month wait for pediatrics to get an appmnt at the Rochester Mayo. (the only MAYO who takes children)
We live in Florida, had our plane tickets booked, hotel reservations made... and were going to leave in a week. (not knowing where else to turn)
By the grace of God.. an EXECUTIVE level person at Mayo (who was a friend of a friend kinda thing) found out we were coming.
GET THIS!!!!- he called my husband and said DONT COME!!!!! they will not be able to help her here!
When one of their own tells you dont come if you have Lyme... by all means... dont go!
Posts: 17 | From Florida | Registered: Aug 2010
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posted
Wow!!! Very sad that a place with such a good reputation of "helping when no one else can" are exactly the same as the Dr.s I've seen thus far.
Thank you all for sharing.
I will be "HOLDING THE MAYO"!!!
(Love the saying) "Hold the Mayo". New one for me.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I agree with everyone else. I'm glad you said you will be "holding the Mayo" (Great phrase!)
Hope you find a LLMD! That is what you need. Not some fancy named hospital. Can't get help there. Good luck!
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Consuelachacha, You said yourself you do not see a LLMD listed there.
So, then, why go there.
You need to contact your MN lyme support group and get a name of a LLMD that they recommend.
Agree...Mayo does not know anything about Lyme.
My dad had ALS, and they even missed that!(which now I figured he had lyme and we didn't know any connection back then.)
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
--just an FYI. Could be that Tincup originally coined the phrase "Hold the Mayo"... about 10 yrs ago!
TC?? What say you?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- And not only "Hold the Mayo" but hold going to any doctors who know so little about lyme that they even suggest Mayo.
We have to save our energy, our resources. I am so much happier totally avoiding doctors who have no clue. Totally. Just say NO and GO to those properly educated in the field of tick-borne disease --- or do the best you can on your own (but I'm proof that is not so easy.)
I do hope you can find a way to get to the LLMD in your state. If not, connect with your support group to figure out how best to take care of yourself in other ways until you can see a LLMD.
The doctors you've been seeing are a waste of time and money (even if insurance pays, it pays for ignorance).
Put your energy into a plan that will get you where you need to go. In the meantime, I hope you can at least get some Olive Leaf Extract.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I also agree with everyone. I'd go to Mayo for other things but not for Lyme!!! I have a friend with fibtromyalgia. She has gotten progressively worse through the years. She is a loyal Mayo patient. Apparently all her symptoms are due to fibromyalgia despite the fact that she lives in an area where Lyme is practically epidemic. And no, no one at Mayo has actually HELPED her.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Save your money. That clinic is a finely-tuned money making machine. They'll rob you of 10s, maybe hundreds of thousands of dollars in no time flat, giving you steroids and other drugs for symptoms, and all that'll do is make you worse.
I went there and after the first consultation, I knew enough to get the heck out of there and not go back. I regret wasting $500+ on that first meeting. Uhhhh!
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, OLE is "something to take for some overall relief while [you] try to get to an LLMD." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Vit. C, Magnesium, Turmeric. All good. OLE is also very good to add to those and more specific.
Well, it's a good thing that "Overall relief" starts with an "O" as that's what I was looking for in my file. I'd totally spaced out what I was looking for but OLE was right there, in the "O" section to remind me.
You can copy and paste the section below to your working file for easy reference during study spurts. Just always start with a low dose, slowly.
Take separately from probiotics. OLE will destroy probiotics.
-------------- An Olive Leaf formula (that contains Terminalia chebula):
My ND (naturopathic doctor) recommended MYROLEA B. Most naturopathic doctors and acupuncturists know about the Seven Forest formulas. As this is a combination formula, there are ingredients included to help the body with "clearing heat" and metabolizing toxins.
Myrolea-B (White Tiger) is a simple formulation of highly concentrated extracts from four Chinese herbs and one Western herb.
The Chinese herbs include forsythia and lonicera, two of the key ingredients of Ilex 15 (and the main antiviral ingredients of Yin Qiao Jie Du Pian), thus boosting the dosage of these essential ingredients.
Myrolea-B also contains the antiviral agents scute (huangqin) and terminalia (hezi). The Western herb in this formulation is olive leaf, which is one of the primary anti-viral herbs derived from the European tradition.
SHUANGHUANGLIAN: Potent Anti-Infection Combination of Lonicera, Forsythia, and Scute - by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine - 2003
Shuanghuanglian (SHL for short) is a modern formula that was devised in the 1960s to treat a variety of infections. It is comprised of the alcohol-water extracts of three herbs: lonicera (shuanghua, often called jinyinhua), scute (huangqin), and forsythia (lianqiao). . . .
. . . One of the early preparations of the SHL was a tablet made of equal proportions of the extracts of each herb. This was used to treat leptospirosis, a disorder caused by a spirochete bacteria, related to the organism that causes Lyme disease.
Leptospirosis causes initial symptoms of fever and chills, headache, and muscle ache (especially in the shoulders); these are consistent with "flu-like" symptoms described for the onset of many acute infections.
In a 1971 report, the formula was described as being made in 500 mg tablets derived from 3.7 grams of the crude herbs, and being administered in doses of 10-15 tablets (thus, equivalent to the extract of 37-55 grams of herbs) every 6 hours (1), a very high dosage.
. . . Recently, Shuanghuanglian has been applied successfully to treatment of Coxsackie B3,
. . . The general indications for SHL . . . are "relieving the exterior syndrome, clearing away heat and toxic material," and its indications are "treatment of fever, cough, and sore throat that arise from wind-heat syndrome."
It is said to have "a good action in treating upper respiratory tract infection, tonsillitis, laryngopharyngitis, pneumonia, acute enteritis, viral dysentery, etc., when caused by virus or bacterial infection."
- full article at link above.
===================
Detail from two of the most reputable sources of OLE:
Die-off effects -- Olive leaf use causes the death of microbes. The liver, kidneys, intestines and skin are therefore tested to their limits, to deal with, and remove them. This causes Herxheimers Reaction, which can have a variety of symptoms, but basically makes one feel ill or under the weather due to a treatment's effect upon the body.
Thus, "die-off," referred to in medicine as the "Herxheimer reaction," occurs when the olive leaf components kills large numbers of harmful germs rather quickly. Then, the patient's membranes absorb toxic products from these dead microorganisms. . . .
See details at link for:
* Safety Precautions and * Known Drug Interactions
SEAGATE Olive Leaf Extract - also see their menu for all their OLE products, including nasal spray, personal spray, etc.
Excerpt:
Side Effects: Olive leaves have been used safely for thousands of years. The only known side-effect is the possibility of a Herxheimer reaction, an allergic response caused by the rapid die-off of fungi that release toxins which may temporarily cause a brief allergic reaction, lasting for several days. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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