posted
So, after exhaustive testing, including testing by renowned LLMDs and still coming up with nothing, I've scheduled an appointment at the Mayo Clinic to try and figure out what is going on with my brain issues. I am leaving in two days for Minnesota.
Does anyone have any experience with Mayo? How do they treat Lyme-related cases? At this point, I'm open to the possibility it could be ANYTHING, especially since my LLMD said he had never seen these symptoms manifest in one day in a Lyme patient, or so severely in one day.
Any advice/things I should watch out for? I know Lyme patients can get the run-around, but they are also going to be looking for brain damage at this point as well from antibiotic toxicity? (And so I need to wait to start my next round of ABs for Lyme until they figure this out, which is also frustrating.)
Any advice/experience/tips would be greatly appreciated!
Posts: 36 | From Connecticut | Registered: Jun 2012
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posted
The consensus on Lymenet is "HOLD THE MAYO!"!!!!!!!
They do not have a Lyme-literate doctor on staff or any who understand this horrible disease or its complex treatment. They will probably give you the "It's all in your head!" diagnosis.
We had an appointment to take our son there, and are glad we cancelled it.
My aunt's neighbor had a granddaughter who had persistent pain since the age of 7, and no one knew what was wrong with her. This went on for years, and when she was a teenager in high school, some kids pushed her against a desk and she fell in excruciating pain, unable to get up.
She was airlifted to a local hospital then on to Mayo. The doctors at Mayo told her she had "acute Fibromyalgia and needed to drink strong Starbuck's coffee"!!
Her parents found a Lyme-literate doctor (LLMD) who, lo and behold, diagnosed her with Lyme Disease! He put her on IV antibiotics right away and she has since gotten better.
I am sending you a pm with some suggestions and wish you all the best.
Catgirl
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posted
This disease is so complex, getting a positive test can be futile.
Lyme and co infections are quite successful at avoiding detection. Yet some patients find the need to test until they test positive. Doing so is not only exhaustive, expensive, emotionally and physically draining (bad for lyme), but it can be a big mistake as they could be working on their lyme and company rather than get shot down by main stream medical docs.
I've read other posts here on Mayo (they're ignorant to lyme). They will probably blame your abx.
How was your western blot from IgeneX (numbers)? Lyme is correctly diagnosed clinically anyway. All ILADS docs know this. Did your doc feel you have lyme? What are your symptoms?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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randibear
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posted
Oh heck. No.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
They will totally deny you have Lyme... they will come up with some label for you... if that.
Good luck, 'cause you'll need it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Razzle
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posted
Mayo's modus operendi is, the patient has a mental disorder unless proven otherwise.
In other words, they will find any reason they can to diagnose "Somatoform" or "Depression" or whatever, rather than really, truely investigate the possible physical causes of symptoms with an open mind to ALL the possibilities.
I speak from personal experience.
-------------------- -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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Keebler
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posted
- Okay, so you are 27 years old. Please trust those of us who may have had lyme from before you were born, seen many with lyme go to Mayo only to be clobbered, discarded, branded as a mental case and much poorer for the bills.
It can take years to become educated about lyme.
It appears that you've been getting the run around and not settled on a REAL, true LLMD who has flexibility to deal with your intolerance to treatment.
Xanax could be making some things worse as it blocks the liver's ability to make enough glutathione to help clear toxins. I don't discount your need for sleep measures but there are other ways that are safer. Just never just stop xanax cold.
See the "Liver Support" links to come later. That explains how xanax can be making some things worse - and what else to consider.
Next, in looking over all your past posts, it appears that you have but have never really been adequately treated for:
Rocky Mountain Spotted Fever
Bartonella
HME (Human Monocytic Ehrlichiosis)
Repeted lyme tests keep coming back negative but you seem to have not had doctors that understood this is never - never - enough to dismiss lyme.
You certainly could have lyme, despite negative tests. Or maybe lyme is not in the picture but with all these other TBD (tick-borne diseases), lyme very likely is along for the ride but, even if not, all these others explain everything. Everything.
With RMSF, HME and Bartonella - and a strong suspicion of Babesia, too - having been basically untreated - your symptoms are to be expected. All these can become chronic and require long-term treatment.
None of these are easy. None.
That you cannot tolerate treatments and seem to stop fairly soon -- understandably so but, nevertheless, you keep searching for answers and you already have answers but are not getting treatment.
Mayo will crush you, just spit you out and crush you again. It's what they do with people who present with symptoms listed in your pasts posts.
It will convince your family that you are nuts and making it all up when neighter is the case.
It will take away valuable money and time that needs to be put on getting you the right kind of doctor.
You may need both a LLMD and a LL ND (naturopathic doctor) who can attend to all the areas of support and targeted treatment.
There are other ways to approach this but I guarantee you that Mayo Clinic is NOT one of those.
Just to be clear: Mayo is NOT one of those.
There have been dozens of hopeful very ill people with lyme who have been serverely damaged by Mayo.
You seem to think they are the wizard behind the curtain, that they hold all the answers. And that is because you have not yet been able to fully educate yourself about lyme -- and you should not have to so much, really,
have to stop now. -
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Keebler
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posted
- For others to better understand your situation and better frame a reply:
Spirocheta posts
17 February, 2013
. . . He told me, and is the second Lyme doctor to do so, that he's leaning strongly towards babs at this point, even though I have never tested positive for it. However, I did test positive for Rocky Mountain Spotted Fever, so maybe something is going on with that as well. . .
17 February, 2013
. . . I think we need to explore this benzo connection. Is it because it makes us "feel" better and not notice? Is it anti-inflammatory?
Or is it neurologically slowing us down, which is somehow helping? I try to talk to people about it, but because benzos have a bad rap and are controlled substances, I run into the problem of people using it as evidence this is a mental illness or that I am developing an addiction.
But I feel like there is something chemical that is going on that might be helping with this.
03 February, 2013
I take Xanax for insomnia. I also experienced panic attacks ever since my Lyme diagnosis 5 years ago (panic attacks most likely caused by Lyme, not the stress of it). I also experience them pretty badly when on -cycline ABs.
I prefer Xanax now for my DP/DR symptoms since my cognitive destruction began. It seems to now make me more "with it."
Definitely don't stop it suddenly if you've been on a while. I tried that once and it was horrible.
13 June, 2012 - Topic: Seeking Dr in CT [You describe your history and symtpoms in a time-line]
. . . I'm a 27 year old female who has had Lyme for 5 years . . . .
2008 - . . . Also tested positive for bartonella . . .tested positive for HME ehrlichiosis. Lyme test was negative . . . . .
Stopped treatment when liver functions were too high. Symptoms improved, but never resolved. Treatments stopped causing herximers, and there was no more improvement.
2009-present -
"Toughed through it"- intermittently saw an infectious disease Dr. S- he would retest me, but was reluctant for any more treatment, since he believes my condition is a neurological one due to hyperflexia in my legs. Neurologist had no answers.
I have toughed it out for five years, but each year, it seems my symptoms are getting worse [symptoms listed at the post]
[from Spirocheta's posts] -
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Keebler
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- Missing: attention to parasites. Not all LLMDs are up to speed on that but many are becoming so.
And, my guess is that when your liver could not tolerate treatment you were not instructed properly in liver support.
See here how Xanax can harm the liver, adding to pain, etc:
As many sleep drugs can cause liver trouble, there are other things that can help symptoms and our bodies at the same time. -
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Keebler
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- A FEW BASICS ------------------------
You said that you could not tolerate taking tindamax to address cysts so stopped. It appears, though, that nothing else was done to address cyst form of lyme. Here's why something else needs to be considered -- and, no, Mayo Clinic knows nothing about this.
See listener comments, too. They show us how very wrong of the ID (Infectious Disease) doctor who was interviewed. Very typical, though, and why ID doctors are not the ones who help those with lyme.
Neurologists & rheumatolgists also follow the same umbrella group (IDSA) that ignores lyme and discounts those who have it.
Making the most of your LLMD visit -
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Keebler
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- Wow, I just reread your post --
You are leaving on Monday for Mayo.
As this is alot for you to read alone, to help you out . . .
Can your parents read all that has been posted above? If so, it may help tremendously. You can still cancel your flight and apppointment there.
I know you may think that if there is something else they may be able to find it. But, with all the tick-borne infections you have, they are just not able to deal with that.
If you go, be sure to show those positive tests for Bartonella, HME, RMSF. You will be told those are not chronic - but you have to realize they most certainly can be.
Mayo clinic does not "believe in" MCS and will mark any patient with chemical sensititivies as a nut case.
As for toxicity issues, Mayo is also not going to know anything to help you. But there is a clininc in Texas that might - reagarding helping the liver (although they do not treat infections there) . . .
MCS & Mold issue which face many TBD patients.
You also may have porphyria -- which doctors will discount unless way off the charts.
See the "secondary porphyria" notes here (but know that Mayo will discount that, too):
An email form is at this page -- if you ask them a question there might be someone who can answer this weekend if you tell them you are to fly out to Mayo on this coming Monday. -
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Keebler
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Kevin had a mysterious illness - a condition so baffling - yet debilitating - that not even a team of specialists at the Mayo Clinic could figure out what was wrong.
Just after 1 minute, he gets into how he was addressed at Mayo. He was very ill, they ran a lot of tests and declared him perfectly healthy.
If you expect Mayo to help you with issues of chemical sensitivity, you are in for a huge shock.
He talks about brain damage and neuro training here. Very interesting. -
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Keebler
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- Also to consider. You don't say if you are free of gluten, dairy and GMO foods. If not, that can make a huge difference (it won't treat infections, of course, yet will help treatment be more tolerable). And this is something that Mayo clinic is in dark about.
You also don't mention avoiding all processed foods. If you are, by chance, consuming ANY aspartame, that can just knock you out in so many ways.
posted
Spirocheta.. Please don't hesitate to come back and tell us how it went. I didn't know you were leaving on Monday.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
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- If you do go:
Avoid Steroids if offered.
Avoid lyme tests (as they don't do the right tests in the right ways).
I'm not sure how they would re-test for RMSF, HME, or Bartonella but tests may not be accurate regarding chronic nature of these.
Especially, avoid lumbar puncture (spinal tap) if suggested to test for lyme. It is not a reliable test for lyme, is invasive and can be painful for days afterward.
Also realize that whatever they put in your medical chart can follow you for life. So, if they decide that there is nothing wrong and you have emotional issues or psychiatric illness, that label will travel in your file, via computer anytime you see another doctor.
I don't know if there is a way to prevent this but - as you check in, ask. That, alone, though, can make a person appear paranoid and you may not be able to block your file from Mayo's results. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Spirocheta, Good luck in your quest. Take notes and listen as objectively as possible.
Realize that many docs who can't solve or fix someone with the myriad manifestations we have, resort to there is nothing wrong when we know, see, and feel how wrong something truly is.
I do hope you get some answers.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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posted
Thank you for all the replies. I haven't read through them yet because of the wealth of information, and my brain issues.
When my symptoms were physical for 5 years, I had all sorts of terrible mental illness labels attributed already, so that is unfortunately nothing new. I do have neuropsych tests that show a sudden, drastic drop in function, which I hope will help me.
I have been to one of the best LLMDs already, who believes I still have Lyme, but his tests also all came back negative except for IgG 66 (which is great, because I used to have many bands positive for years before this latest round of treatment). Also, negative for all coinfections.
They already did a spinal tap two months ago, so hopefully they won't do it again.
The "Can ABs Cause a Herx/Brain Damage" thread summarizes what happened to me the best.
I am very concerned because even my LLMD, who believes I still have Lyme, said that my brain symptoms are not manifesting the typical way they would from a Lyme infection. He said he's never seen it like that. Which sounds ominous.
I have never been tested/had anything about parasites mentioned to me. I was unaware of this avenue. What kind of parasites are there?
I'm guessing Mayo will rule out all the other terrible things it could be. If they still find nothing, I will have to assume Lyme. But at least all the other weird, horrible things will be ruled out for good. Something is very wrong with my brain and I cannot go out or work.
I will keep everyone posted. Thank you for all the advice. I'll try and check the links over, albeit slowly. (My vision is shot.)
Posts: 36 | From Connecticut | Registered: Jun 2012
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posted
Coinfection testing is MOST OFTEN negative .. even when we have them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Razzle
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posted
I will repeat myself here:
Mayo is NOT interested in investigating a medical puzzle, nor do they have the skills to do so.
They will likely want to repeat the spinal tap...they do not trust any test results not done at their facility.
Unfortunately, people and many doctors are under the mis-conception that Mayo is somehow superior to other medical facilities, when nothing could be farther from the truth.
I have heard and read of many, many failures at Mayo, for all sorts of disorders and symptoms.
I have yet to hear of one single success story from Mayo. And I've been involved in a LOT of medical support groups through the many years of misdiagnoses.
And I have personally been to Mayo myself, and wasted the money, seen how they operate, and wished I'd never gone.
-------------------- -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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canbravelyme
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Keeb � where is the parasite warrior thread? I've been looking everywhere...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Spirocheta - In fairness, I did not read all the replies here. All I can tell you is that you will likely be wowed by the cleanliness and efficiency of the Mayo Clinic, as reported to me by a friend.
You will most likely be told you have fibromyalgia, which to me is the biggest BS non-diagnosis of the 21st century. But I guarantee you will be offered all sorts of pharmaceutical treatments for it.
And not one person there in that facility (despite them being in a now endemic area) will even broach the subject of a tick bite, an erythema rash or even a possibility of Lyme Disease.
Save your money, your time and your sanity. Get yourself to a LLMD and please hold the MAYO.
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beaches
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lax mom, as far as I'm concerned, facilities like Mayo are good for things like rare brain tumors.
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Catgirl
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quote:Originally posted by Keebler: - If you do go:
Also realize that whatever they put in your medical chart can follow you for life. So, if they decide that there is nothing wrong and you have emotional issues or psychiatric illness, that label will travel in your file, via computer anytime you see another doctor. -
Bingo! Keebler is spot on!
Neuro symptoms are very common with babesia. It sounds like you have the big 3 (bb, bart, babs) in addition to whatever else you tested positive for.
Best of luck to you. I hope that you carefully read everyone's responses above before you go to your apt, or better yet, cancel it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
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- While you say you've already been labeled, if you get labeled as a mental illness or malingerer from Mayo, you may find it impossible to ever again be treated seriously by any doctor, anywhere.
Still, I do understand your hope that Mayo has the key. It's just that they most likely don't. Others have been mistreated terribly there due to their ignorance and arrogance.
How many hours of work will you or your parents have worked - or will need to work in the future - to pay off the travel and the Mayo bill?
Not all will be covered by even the best insurance.
There is really no way they can check your brain as I think you think they can. There is just no way.
Tests are not even available to show much but, even with some that are, Mayo does not do them.
They are not trained in toxic infections or in all the ways that TBD (tick-borne disease) affect the body. Therefore, they just don't consider it.
PORPHYRIA might be something they would test but, still, they do not consider chronic or secondary porphyria, only genetic. And even the best genetic test for porphyria is not very reliable.
You can address that matter even without going a thousand miles.
So much falls to the intellent, wisdom and education of a doctor to clinically diagnose. But Mayo doctors are not adequately educated so as to even know how to sort out symptoms in someone with TBD.
As for brain waves, a QEEG far exceeds an EEG for brain waves in someone with chronic illness but they won't do a QEEG, only the lesser EEG.
If you have an echocardiogram, they should do it both lying down and standing up but they will do it only lying down because they don't know better.
And on and on.
Mayo is not the seat of knowledge that most think it is - not by a long shot.
The cost can exceed tens of thousands out of your pocket or your parents' savings.
Now, that said, having any TBD is costly and much is not covered by insurance. But, you KNOW you have 3 TBD. You know you have trouble with MCS and chemical sensitivity and being able to tolerate medicines. But Mayo is blind to all that.
Still, there are other ways to approach this to put your precious dollars to the best use.
Please consider what we have all known, seen, heard and experienced for years regarding the lack of proper diagnostics at Mayo.
They do not respect any patient who comes in with the kind of background and myriad of symptoms as those with TBD.
If you tell them you think you are toxic from antibiotics, they will just tell you that you should never have taken them to begin with.
If you tell them you take xanax, they will write you off as anxious.
Now, there is the slight chance they might pick up on something else that is going on - that is everyone's hope when they go there.
But those with TBD and MCS who go there are not going to receive proper diagnostics because Mayo just does not know about all this so as to consider how the body is affected.
I wish I could be consise and to the point. I can't really say what I wish I could. I just want to prevent you from the pain, exhaustion and poverty that a trip to Mayo can bring when there is so much on your plate that is evident and needs additional attention -- in ways that maybe have not yet been considered.
Just because limited treatments did not "cure" you does not mean those infections can be ignored.
Your hope that they can see toxicity in your brain is not likely to be realized. You can't "see" on any test but it presents in other ways -- and that's what the liver support is all about during treatment.
I hope whatever your decision that you take good care of yourself as you move foreward. -
[ 03-23-2013, 11:21 PM: Message edited by: Keebler ]
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poppy
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One last caution IMPORTANT: Do not give them names of any lyme doctor you have seen. If it is listed on medical papers, such as test results, that you give them, use a black marker and block out the name.
These institutions that fail so miserably with tickborne infections will try to make lyme docs lose their licenses.
Even if you think Mayo is the greatest, don't screw up the treatment other people are getting from lyme docs.
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Catgirl
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"I am very concerned because even my LLMD, who believes I still have Lyme, said that my brain symptoms are not manifesting the typical way they would from a Lyme infection. He said he's never seen it like that. Which sounds ominous.
I have never been tested/had anything about parasites mentioned to me. I was unaware of this avenue. What kind of parasites are there?"
I'm sure you are just looking for answers. You may be barking up the wrong tree though. Did your lyme doc do a spect scan on you? Any good lyme doc can order one. There is simply not enough info about lyme and the brain. Very few dollars have been spent on lyme research. It is highly unlikely mayo can remotely make the connection with lyme.
Parasites are still heavily missed in lyme land. It takes an astute patient to notice the symptoms, and even then you have to push for treatment. Check out humaworm's website (symptoms). I have a top doc and I had to bring parasites up several times. I tried humaworm and told him what came out of me. Then he treated me.
Please remember what Poppy posted above. None of us can afford to lose a lyme doc (don't tell them anything about your doc and black out his or her name and address). I made this mistake before. If they start asking you lyme questions, cut them off and just tell them you don't know.
P.S. parasites go everywhere, including the brain, eyes, jaw, you name it.
Best wishes to you!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
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- Please be careful with assumptions, too, that can ruin the avaibility of lyme treatment for everyone.
You say that Mayo is "also going to be looking for brain damage at this point as well from antibiotic toxicity"
I don't know where that idea popped up but lyme, itself is one of the THE most toxic infections known to man. Antibiotics - if balanced with good liver support and diet - are not the toxicity problem that the infection is.
Most doctors with the IDSA (Mayo is at the top) would love nothing more than to have all lyme patients denied any treatment. Please do not assume that your brain trouble is due to "antibiotic toxicity" as you put it.
Again, when antibiobics are balanced with support, toxicity is not the huge concern as it the actual infection.
But, also, with mulitiple chemical sensitivies, your body can have a toxic reaction for OTHER reasons, such as PORPHYRIA, the inability to tolerate certain drugs, etc.
You have not received adequate treatment for all the TBD you list (RMSF, Bartonella, HME and likely lyme). Even if your LLMD is one of the good ones, he is obviously not the best for your case if he's never seen anyone like you before.
Have you seen the documentary UNDER OUR SKIN ?
If not, be sure to see it before you step foot onto that plane. It's important to have this background and see others who were quite affected.
Because many of the symptoms of Lyme disease involve the nervous system, it was speculated that the spirochete produced a toxin that disrupted normal nerve function.
Through the use of DNA manipulations and a database of known protein toxin DNA sequences, a match was made with a selected Borrelia burgdorferi (Bb) gene and a specific toxin in the database.
Protein generated from this cloned Bb gene was examined biochemically and found to have characteristics similar to that of botulinum, the toxin of Clostridium botulinum, a zinc endoproteinase.1
The toxin from Bb belongs to a family of toxic proteins known as "zinc endoproteinases" or metalloproteases, and includes the toxin from the organism causing tetanus as well as those from many other well-known infectious diseases. . . . -
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Keebler
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- Have you addressed HEAVY METAL toxicity yet? Nearly everyone with lyme is at risk of this and it can cause all kinds of brain and nerve trouble. -
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Keebler
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- To help prepare you for your appointment or aid in your decision whether or not to cancel (or just postpone until you can learn more):
quote:Originally posted by poppy: One last caution IMPORTANT: Do not give them names of any lyme doctor you have seen. If it is listed on medical papers, such as test results, that you give them, use a black marker and block out the name.
These institutions that fail so miserably with tickborne infections will try to make lyme docs lose their licenses.
Even if you think Mayo is the greatest, don't screw up the treatment other people are getting from lyme docs.
-
Amen!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lululymemom
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My 25 yr old daughter who was extremely ill had her blood sent to the mayo clinic upon the advice of a specialist.. 2 weeks prior she had 6 positive bands with Igenex. CDC positive. With Mayo all results negative. Speaks volumes about the accuracy of their screening method.
lululymemom
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posted
Droid, I know my daughter got better with treatment and subsequent testing with another doctor showed that she had been infected but is better now. I do believe Igenex offers legitimate results. If we were to do it again and it was available to Canadians we would go with the Advanced Lab testing. Simply because i would rather do a blood culture test than an anti-body test.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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poppy
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Really worried that this person did not come back to read the thread and the warnings at the end. This is the kind of situation that backfires on us. A poorly informed person goes to lyme docs and decides to go then to someone who will definitely not help and may hurt the lyme docs and other lyme patients by giving out information about her treatment, etc.
This is a time bomb.
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Ellen101
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posted
Poppy there is no way of knowing if she read it or not. I can certainly understand her fear and her need to seek answers. just as there are some with undiagnosed Lyme there are those with misdiagnosed Lyme. There definitely needs to be other avenues explored. Sometimes We can get stuck on a Lyme merry go round and there are definitely some in the Lyme community profiting from this....
As far as the need for secrecy I think that is a little overstated. There are Lyme doctors promoting themselves on the internet through web sites and webinars. They certainly aren't in hiding. When you go to fill yet another prescription for antibiotics their name is on it. To withhold info about the treatment you are on or have been on could be very dangerous. Whomever you go to for treatment needs to know what you are taking or have tried in the past. No one I have ever seen for Lyme has ever told me not to share this info in fact it has been just the opposite...
Posts: 1750 | From United States | Registered: Dec 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Ellen, if you had been around as long as I have in lyme world, you would understand what I wrote. If you had lost several lyme docs to the persecution, you would understand.
Yes, it is good to have a thorough check of all the possibilities when you are sick, but that will not happen at Mayo or the other big name institutions. None of them will adequately understand and consider tickborne diseases. So, if that is the cause, you won't be told the right thing. Many, maybe even most, of us have already been to umpteen doctors to be diagnosed, and were not correctly identified as lyme and coinfected patients. So, why would it help for someone who already has positive tests for tickborne diseases to go to another ignorant doctor at Mayo?
Posts: 2888 | From USA | Registered: Mar 2004
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posted
If the doctor at the Mayo clinic requests her old records, he is going to see what treatment she was given in the past and by whom -unless Spirocheta requests the old records herself, pays for the copying fees, (blacks the names out) and then hands over the records.
Posts: 631 | From the south | Registered: Nov 2008
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
There is the possibility that yes she had Lyme, but what she is dealing with now is not related to Lyme. The LLNP I was seeing treated me for Lyme for over a years and was still recommendingmore treatment. I decided to get a second opinion from a different LLNP and she felt the symptoms I was having may not be due to Lyme at all. That yes I had it in the past but it was time to look elsewhere. Through other testing she was able to uncover problems, not Lyme related.
Are you puzzled by the fact that so many self promote through books they wrote, web sites etc? Maybe it's me but they don't seem to be in hiding. As a matter of fact there is one well knownLLMD that at the end of every webinar asks us to share his info on Facebook etc.....
Posts: 1750 | From United States | Registered: Dec 2011
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I haven't ready everyone's replies, but I've heard over and over again to stay away from the Mayo Clinic (...hold the mayo).
You don't want their mislabeling to stick. It could cause problems in the future.
Good luck.
Posts: 2238 | From East Coast | Registered: Jul 2010
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I think it depends on whether the LLMDs she's seen are in a State that is protected.
The brave doctors are aware of the risk they're taking when they treat Lyme. I don't think it's fair to be hard on this patient for going to Mayo, or if she gives out names. Furthermore, who is doing what is pretty transparent even via this newsgroup when one says, "Dr. H. in NY", or Dr. S in SF, for example.
So, we will continue fighting for equality in this, and be glad that we have Lymenet available as a public resource � which is, in no small way, an important piece of activism.
I, for one, have been helped immeasurably by this forum � if it weren't for you guys, I'd likely have died of autonomic nervous system failure / of unknown cause by now. Not that my struggle is over � let's hope if one of the IDSA members reads this thread, they'll start to seriously consider coming together with the ILADS camp, and putting an end to all the needless suffering.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
She did not read the later posts because I sent her a PM asking her to read them. It was not read.
What I find puzzling is that she could not learn from the experience of others who had already been to Mayo. People who do not learn from the past are doomed to repeat it. That is the whole point of having internet lyme forums. Only in this case it can hurt more than one person. A doc I know about had a similar situation happen to him and may lose his license. A patient went to him with lyme symptoms and a positive test and was started on treatment. Then the patient decided to get a second opinion from an ID doc. This doc then reported him to the state medical board. For treating a patient with a positive test!!! So, what chance do our doctors have in this situation?
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Her mistake was in posting at the last minute about Mayo. In her mind, it was too late to change her plans.
All we can do is hope things turn out OK for all concerned.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I can understand wishing someone, anyone out there could give me a definitive answer: "This is what you absolutely have and this is how you fix it."
It's not so easy to cancel an entire trip half way across country last minute...especially when part of you thinks maybe there could be something else besides Lyme going on too.
My hope is that Spirocheta is able to rule out all the rare things that Mayo can look for, then proceed with Lyme treatment.
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Poppy when you send someone a pm they get notified by email. If they read the pm in their email it won't show up as read on lymenet.
I too hope Mayo can rule out some things for her. Sometimes you just gotta follow your gut.
Posts: 1750 | From United States | Registered: Dec 2011
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posted
I�ve been to Mayo in December 2011. At that time I had a set of symptoms that my PCP, neurologist and rheumatologist could not put together � neck, shoulders and upper back pain, pain in the ear, pain in the jaw joints, pain in the knee and surrounding muscles in one leg, blood pressure jumping around, some chest pains, etc. I did not know about Lyme at that time and did no pursue it.
My PCP requested appointment for me at Mayo. So I went. They did a lot of blood tests, some x-rays, MRIs; there were multiple consultations with rheumatologist and spine specialist.
Everything was done in less than 5 days. They did not test me for Lyme or any infections at all � either tick born or unrelated.
They refused to provide me with neurologist and orthopedic consultations saying it is unnecessary.
They disregarded abnormal rheumatology blood work saying it was �red herring� (yes I have it in official Mayo report).
They said they are not finding anything that explains the symptoms.
I was sent home with the diagnosis of chronic neck pains, unspecified pain in the leg and with the prescription of topical spray-steroid for ear pain.
For the neck and back pain they suggested seeking help in pain center � even though I told them I tried it and PT and acupuncture, etc.
For jaw joints pain they said they would schedule with their dental center� I received a call 6 months afterward asking if I still need an appointment� what a joke�
The clinic itself is very well organized, clean and comfortable. Most of the doctors I saw there were of middle age or younger but I did not notice anything that would make them special or smarter than any good specialist.
Mayo medical bills were very reasonable and my insurance covered most of the part. I had to pay very little out of pocket after all.
After that visit my PCP stopped taking my words seriously. I became a faker for her�
Many people say that Mayo is a hit or miss. For me it was a big miss.
I think they are not setup to recognize Lyme in most of the cases unless you have clear cut bull rush and positive ELISA test.
They are not the best in rheumatology as well.
I hope my experience would be helpful
-------------------- Alild Posts: 16 | From Chicago, IL | Registered: Mar 2012
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