Has anyone had any success with them? Has anyone been to them and found out that they did not have lyme but something else?
I am being very serious here. Please!!
I know some of the posters will have answers about them being DUCKS when it comes to Lyme, and I believe most doctors are about lyme.
But, what if all this time and money spent on "Lyme" treatment is not lyme at all.
I just want to know if there are ANY success stories with Mayo.
I am thinking, this may not be lyme at all and I would be full of guilt if I did not get my husband the best treatment possible.
I wonder sometimes about what if???
What if it is something else causing all his pain.
The depression and weight gain is not from lyme.
I do not care what any LLMD says. The depression is from the 3 years in hell he has lived from being in pain,staying in bed 24/7, and from trying to explain to everybody jsut how you feel and no one understanding.
The weight gain comes from the depression.
We just want someone to explain. All the antibodics he has been on and the IV for 9 months straight and then another 3 months has made him WORSE
Does not sound like his LLMD is helping much either.
Sorry to vent but, I am really worried that something even more serious is wrong and it is being blamed on Lyme.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I went to Mayo Clinic in Scottsdale. They were helpful in trying to rule things in or out that they could think of. In that they were helpful. After being seen by an internal medicine doctor, two rheumatologists and one neurologist, they had no idea what the cause of my problems were.
As it turns out, I do have lyme disease. And that did not even cross their minds. I am getting better with treatment. (6 1/2 months on IV helped a lot).
I think it is always a good idea to evaluate your situation. A trip to Mayo may be a good idea in making sure it is not something else.
If your husband has neurolgical issues, e-mail me privately and I'll give you the name of a good neuro in NY that is familiar with lyme...and will look at the whole picture in trying to figure out what is wrong with someone.
Good luck. You are doing the right thing by trying to help your husband in every way you can.
My prayers are with you.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
From what I have read, the spirokete is the only bacteria that excretes a toxic die off when killed, thereby, the herx reaction when medicine is taken. The herx reaction is one of the ways the doctor knows he has made the right diagnosis.
Did your husband have a noticeable increase in pain and symptoms once treatment began? If so, this is supposed to be the best indicator that it is indeed Lyme.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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quote:Originally posted by proud pup: The depression and weight gain is not from lyme.
Why not? Lyme is well-known for causing both.
I herxed for an entire year non-stop once I began treatment. It was another year before I felt any better. So, depending upon how long your husband has been ill, his treatment may be right on schedule.
If you feel you must go to Mayo, keep in mind that they will NOT dx Lyme even if it is. Does your husband have a positive test?
Has he been treated for babesia?
I know you will make a decision the two of you feel is right.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
My LLMD definitely believe weight gain is due to Lyme disease.
I can pinpoint the time I started showing symptoms in school and that is exact same time I went from normal weight to major weight gain. My parents and my doctor could not believe how quickly I was putting on weight or how I was putting on weight. I was put on every diet possible (starting in 5th grade) and it was believe I had to be sneaking food (which I wasn't - I couldn't drive, I had no money, I was in 5th grade!).
Just this past two years both my husband and I put on 75 pds each even though our eating has not changed!
My LLMD is saying the majority of her patients are saying the same exact thing. They are coming in complaining about gaining massive amounts of weight for absolutely no reason. They were normal sized before catching Lyme disease.
Why wouldn't Lyme attack the pituitary gland and/or do something to our metabolism???
Posts: 1485 | From USA | Registered: Apr 2004
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posted
I went to the Mayo clinic in the fall of 1986. I had a huge bulls eye rash on the top of my right foot, and I was really sick. They did a lyme test that came back negative and told me the rash was granuloma annulare. I thought they were idiots!!
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
Thanks for all posts back. 2 weeks ago we had him retested with Igenex. Still waiting for results. He tested positive thru Igenex 3 years ago. It was not CDC positive.
His immune system is better now then before.
We just want to know what the results will show now. Then go from there.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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posted
CDC positive or neg. means nothing. If he had it three years ago, which he must have, then he still has it if he did not continue treatment beyond 2 months after the last symptom was noticable.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
My story is similar to Timaca's. I got sent there by a local neurologist who didn't know what to do with me. After a week at Mayo in Scottsdale and about $6,000 in medical bills, I got the diagnosis of Fibromyalgia, a diagnosis I already had. Nobody ever mentioned Lyme - in fact, no doctor I have ever seen mentioned Lyme.
I really don't want to see you spend time and effort going to Mayo Clinic and not getting any answers. You might do better getting another opinion from another LLMD, as someone else suggested. But I certainly understand your concerns, and if you need more answers, then by all means seek them out.
Tracy - still new to all this....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Hold the Mayo Posts: 1010 | From Mars | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
I just had to respond with my experience of the Mayo, Jacksonville.
Frist I'll quote timaca, "I went to Mayo Clinic in Scottsdale. They were helpful in trying to rule things in or out that they could think of. In that they were helpful. After being seen by an internal medicine doctor, two rheumatologists and one neurologist, they had no idea what the cause of my problems were."
I could've written that statement, of course, substitute J'ville for S'dale.
I saw them in January 2000 and finally got a clinical diagnosis by my (new at the time)family physician.
I was in severe pain all over and joints, too for two years when diagnosed, then I started on an abx regimine, off an on for the next three years plus. I was on the Duragesic patch for pain as well as Hydrocodone. I have been off the Durgisic patch for 10 months now and off the Hydrocodone for about 3 months now.
Guess what I'm really trying to say is, IMO, and from what I've read over the years on this site, it takes around three years of treatment for a person who really have Chronic LD to see a remission. I consider that I've been in one for several months now.
I am of several anti-depressants, Seroquel, Depakote and Trazodone, and I've gained a lot of weight....was a size 4 at my Wedding last summer and now am in a size 14...that sucks.
I gained weight when I first started treatment then lost it, but, this year and the Seroquel and the fact that I quite smoking, has produced some more gains.
Hang in there, and if you just need peace of mind, and you can afford it (with no insurance they charged me up front $2500.00 just to get an appointment) go for it. It can't hurt and they just may find something.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I have heard nothing good about mayo or johns hopkins on lyme disease. YET
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
New church, lady asked how was my health. I told her the craziest thing had happened, my doctor had diagnosed Lyme disease.
Friend, "Oh, my best friend had Lyme."
Me, "she did really?!? Would it be o.k. if I called her, would you mind giving me her phone number, who is her doctor? How is he treating her?"
Friend, "I would give you her number but she died last week."
Me, "Oh, I am so sorry! Did she have a car wreck?"
Friend, "she was being treated at Mayo clinic, she died of Lyme disease."
Honest to God--that was the conversation.
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Linda, that's really an awful story!
Around here, it's difficult to meet someone whose life hasn't been impacted by Lyme in some way. Most of the stories I hear are pretty grim ones, too.
In the two years prior to starting abx treatment for positive Lyme, I gained 25 pounds, even though I was swimming about 1 mile a day.
Since starting treatment, I've lost all that weight. In terms of eating habits, nothing really has changed...
Posts: 2549 | From never never land | Registered: May 2005
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posted
I can only speak from my personal experience there . I just went this past June 2 times. I have dysautonomia caused by the Lyme and so that is what I went for.
I was treated beyond badly by the Dr's... they were arrogant and they HATE Lyme disease.... They will go out of their way to disprove you have it.
I made sure they never took any blood work there so that they could not do something to me such as write that I never had Lyme....
They kept saying " pnly Mayo's tests are accurate for Lyme or anything else"
Be very weary of this place.....
It looks very impressive...but buildings and in a disneyland like setting....it can suck you in , but all it really is is an impressive building in the middle of Minnesota with second rate Dr's at best.....
Posts: 437 | Registered: Sep 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
And on all the experiences with Mayo above: Ditto the Cleveland Clinic!
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
Depression sure does come with being bedridden and having not much of a life.
However, it and weight gain can also come from the disease itself. Have you read any of the papers from say, Dr. Fallon? They might shed some light on some of the depression aspects.
As far as Mayo goes, I've never heard any good things about them with regard to Lyme. I know they've helped a lot of people with other problems, but they seem to be somewhat Lyme hostile. I know they helped a friend of mine's wife with breast cancer though.
However, my brother-in-law is a doctor and he doesn't even hold them in very high regard. He told me that the people that he had referred there (not Lyme) were just charged a bunch of money, but were not helped.
quote:Originally posted by proud pup: I no this is a sore place for most but....
Has anyone had any success with them? Has anyone been to them and found out that they did not have lyme but something else?
I am being very serious here. Please!!
I know some of the posters will have answers about them being DUCKS when it comes to Lyme, and I believe most doctors are about lyme.
But, what if all this time and money spent on "Lyme" treatment is not lyme at all.
I just want to know if there are ANY success stories with Mayo.
I am thinking, this may not be lyme at all and I would be full of guilt if I did not get my husband the best treatment possible.
I wonder sometimes about what if???
What if it is something else causing all his pain.
The depression and weight gain is not from lyme.
I do not care what any LLMD says. The depression is from the 3 years in hell he has lived from being in pain,staying in bed 24/7, and from trying to explain to everybody jsut how you feel and no one understanding.
The weight gain comes from the depression.
We just want someone to explain. All the antibodics he has been on and the IV for 9 months straight and then another 3 months has made him WORSE
Does not sound like his LLMD is helping much either.
Sorry to vent but, I am really worried that something even more serious is wrong and it is being blamed on Lyme.
posted
My neighbor's father has Lyme with classic ACA rash on his arm. (He has had dozens of tick bites in our hyper-endemic area.) The arm is majorly swollen and he's in horrific pain. He cannot lift the arm, but carries it.
Mayo diagnosed him with SHINGLES. Gave him steroids. He's going downhill fast. Went back to Mayo, "This is so unusual," they said, [having Shingles on your arm], but we can't help, you'll just have to live with it."
The poor man now has spots on his palms too. Could be RMSF and Lyme and god knows what, but as someone said before, "Mayo goes out of their way to NOT diagnose Lyme."
AVOID MAYO LIKE THE PLAGUE!! Smart person who did not let Mayo draw blood so that Mayo can say their p--- p--- tests didn't show any Lyme.
Minnesota does not want Lyme recognized or announced. Birders and other animal watchers from out state contribute $500,000,000 anually to the state's economy.
We are trying desperately to convince my friend's father to see a Lyme doc, but farm folk move slowly and don't like to question authority, especially such vaunted Medicine as the Mayo.
Posts: 422 | From Luck home | Registered: Sep 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Lymeliter answer was to the point- and made me LOL--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I went to a rheumtologist at Mayo in MN in 1990-something(I don't remember for sure). I was treated like an abused housewife and told I had fibromyalgia. They treated me like an idiot. The dr. wasn't nice while I was in with her alone and then when my husband came in the room after the exam, she was like a different person. I was not happy with them. They never mentioned Lyme, but that was a long time ago. Maybe it depends on what kind of specialist you go to. FYI: I became very depressed because of my chronic pain and spent a lot of time sleeping, taking antidepressants and thought I was crazy for a long time. I've been on IV antibiotics since last April. It takes a long time to feel better and my LD said I'd get worse before I got better. But..I don't blame you for wanting to rule out other problems too. Good luck to you and your husband.
-------------------- "I can see clearly now" Posts: 22 | From midwest | Registered: Dec 2005
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posted
You'll get the same response at the world famous Cleveland Clinic also. Don't waste your time there either. The doctors are rude and arrogant also. He told me I had fibromyalgia too and that there was nothing seriously wrong with me. I asked him then why are my legs so weak. No response.
Posts: 340 | From Ohio | Registered: Oct 2005
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