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!
Posted by hopingandpraying (Member # 9256) on :
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.
[ 03-24-2013, 11:47 AM: Message edited by: hopingandpraying ]
Posted by Catgirl (Member # 31149) on :
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?
Posted by randibear (Member # 11290) on :
Oh heck. No.....
Posted by Lymetoo (Member # 743) on :
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.
Posted by Razzle (Member # 30398) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
- 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] -
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
- 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 -
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
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. -
Posted by Keebler (Member # 12673) on :
- 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.
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posted by Lymetoo (Member # 743) on :
Spirocheta.. Please don't hesitate to come back and tell us how it went. I didn't know you were leaving on Monday.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Lymetoo (Member # 743) on :
Ugh.. they will SO want to do a spinal.
Posted by Dove7 (Member # 39546) on :
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.
Posted by Spirocheta (Member # 37889) on :
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.)
Posted by Lymetoo (Member # 743) on :
Coinfection testing is MOST OFTEN negative .. even when we have them.
Posted by Razzle (Member # 30398) on :
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.
Posted by canbravelyme (Member # 9785) on :
Keeb � where is the parasite warrior thread? I've been looking everywhere...
Posted by Lymetoo (Member # 743) on :
I know someone who went to them for evaluation and help with Sjogren's.. they came home VERY ANGRY!!! Got no help.
Posted by lax mom (Member # 38743) on :
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.
Posted by beaches (Member # 38251) on :
lax mom, as far as I'm concerned, facilities like Mayo are good for things like rare brain tumors.
Posted by Catgirl (Member # 31149) on :
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.
Posted by Keebler (Member # 12673) on :
- 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 ]
Posted by poppy (Member # 5355) on :
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.
Posted by Catgirl (Member # 31149) on :
"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!
Posted by Keebler (Member # 12673) on :
- 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. . . . -
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
- 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):
Watch UNDER OUR SKIN at this link through HULU -
Posted by Lymetoo (Member # 743) on :
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!
Posted by lululymemom (Member # 26405) on :
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.
Posted by droid1226 (Member # 34930) on :
Lulu,
Initially the exact same thing happened to me at the Cle Clinic. The ID dr. there suggested that Igenex was being run out of someones basement.
Posted by lululymemom (Member # 26405) on :
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.
Posted by poppy (Member # 5355) on :
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.
Posted by Ellen101 (Member # 35432) on :
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...
Posted by poppy (Member # 5355) on :
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?
Posted by girl (Member # 18022) on :
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.
Posted by Ellen101 (Member # 35432) on :
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.....
Posted by Tammy N. (Member # 26835) on :
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.
Posted by canbravelyme (Member # 9785) on :
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.
Posted by Lymetoo (Member # 743) on :
She probably read this.
I think we'd better pray for her.
Posted by poppy (Member # 5355) on :
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?
Posted by Lymetoo (Member # 743) on :
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.
Posted by lax mom (Member # 38743) on :
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.
Posted by Ellen101 (Member # 35432) on :
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.
Posted by Alild (Member # 36860) on :
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
Posted by seekhelp (Member # 15067) on :
Well, I think the original poster is probably well aware now about everyone's opinion on Mayo!!!! OMG. Posted by Spirocheta (Member # 37889) on :
Sorry I have not responded to the thread. I was at the Mayo and could not get access to the thread in the meantime.
Consensus: HOLD THE MAYO.
Thank goodness they did not waste more of my time. I was only there for two days, and they sent me home to "wait for test results."
The neuro symptoms were addressed by a neurologist, who ordered a few tests, none that came back with anything. He retested for Lyme and coinfections and such. Obviously, those were negative, as I expected.
There was not much emphasis placed on Lyme at all during my visit. But there was also no emphasis placed on why I was there, which was the dramatic cognitive loss.
The ID doctor said that I "probably have a disease that hasn't been scientifically discovered yet, and therefore cannot be tested for." She agreed that something terrible happened on December 28th, but said it was up to the neurologist to figure it out, since it wasn't her area of expertise. I thought she was very nice, though.
She beat around the bush telling me that I may be antibiotic sensitive, and should not take any more, but would not admit that they caused a reaction, but hinted they did, but also that Lyme did not. She said it was up to the neurologist to examine me.
The neurologist rushed me out and sent me home.
He said he is waiting for the results of a test done, and they will get back on Tuesday. I have no idea what test he is referring to, since I have all the results already on the "Mayo iPhone App."
They didn't even send me to a rheumatologist for some **** diagnosis. Nothing.
At least they didn't pull the psych angle on me. Honestly, I don't even think they gave me enough consideration to think to pull it.
My neurologist recommended I could take Ritalin for my "concentration issues." Perhaps HE should have been the one paying attention, not me.
They didn't seriously consider the neuropsych scores because an interpretation was not provided with them. (They were raw scores.)
I could interpret the damn things, and I'm not a doctor.
Even if I don't have Lyme, if I do, if I still do, if I never did, who knows. But they are supposed to the most investigative medical establishment in the country. And their investigation of this "wonderful medical mystery" took less than 48 hours.
I was so ill from brain overload by the second day that I was in a wheelchair all day.
Maybe when they discover that "mysterious illness that they can't test for yet because science hasn't discovered it," they'll name it after me.
What an absolute bunch of garbage.
Posted by canbravelyme (Member # 9785) on :
Oof! What an ordeal. I'm horribly disappointed they didn't take more time with you � I'd also believed the hype that one would receive a thorough workup. Maybe Mayo isn't what it used to be?
What a joke about the mystery illness. Everyone here knows exactly what that is.
There is a LL Neuro psych � have you considered consulting with them?
Posted by Life+Lyme (Member # 33568) on :
I went to Mayo several years ago and didn't have a bad experience per se, but I didn't really accomplish anything.
They didn't catch the Lyme, and they simply diagnosed me with Dysautonomia...they missed the whole picture.
If I were you, I would put that money into seeing doctors I KNEW were knowledgeable and open to Lyme; however, if you are worried about ruling other things out, this is the place to do it!
Posted by Keebler (Member # 12673) on :
- Sorry your time there was not helpful.
Did you ask them about PORPHYRIA when it was suggested that you may have reacted to medications?
I hate to tell you but they may have handed you a psych diagnosis, after all with the
"probably have a disease that hasn't been scientifically discovered yet, and therefore cannot be tested for."
That is code for psych.
Nearly exact same wording landed on my head when I was so ill and looking for answers that they said what you were told and also "you have something for which we cannot test - it would not show up on any test."
I thought that, maybe, the doctor realized the tests were just not good enough yet.
I later found out - by getting a quick look at my chart when he was out of the room - that is code for someone they want to kick out the door, someone they think is not ill. It was meant to "quiet her to stop asking for any more tests."
Months after leaving that doctor, paying out of my own pocket through a ND, positive tests from Igenex Lab for Borrelia, Babesia and HME (Ehrlichia). They just had not done the correct tests at the correct lab.
It was also later discovered that I had Porphyria, hence the adverse reaction to medications (along with the herxheimer reaction).
Do not underestimate the HERXHEIMER reaction from antibiotics in the presence of lyme. It can cause severe reactions and if liver support is not up to speed, it can be misinterpreted. -
Posted by lax mom (Member # 38743) on :
Spirocheta so sorry you had to deal with Mayo's invalidation.
It sounds to me like you have Lyme and your body is very sensitive to meds. You probably have the bad detox gene. Your body can't break down the meds, nor the toxins, nor the dead bugs.
So, like me and many others on Lymenet, your body responds to meds like they are poison. I bet the brain symptoms are due to inflammation.
I don't think there is any particular way that Lyme affects the brain, everyone's manifestation is different...so I question how your LLMD would find it odd.
Posted by lax mom (Member # 38743) on :
From your post on another thread. "In November, ironically, I was bitten by another tick and contracted another strain of Lyme. The new, terrible knee pain was what alerted me. The new test was:
IgM 41 and 2 other IgMs, don't remember them.... I think 23 and another.
IgE 41 IgE 58 IgE 66
I also tested positive for Rocky Mountain Spotted Fever."
Were all the tests from Nov 2012? If so, it doesn't matter what testing shows 2 months later, you had positive tests for tick-borne illnesses. That's what you have.
Plus, the weaker the immune system, the weaker the immune response, thus negative test. The sickest patients have negative tests.
I don't know who the world renowned LLMD is in NYC, but why is he re-testing you 2 mos later?
Posted by poppy (Member # 5355) on :
Sorry about this. I guess the best that can be said is that they didn't keep you for a week and do another spinal tap.
This combination of tickborne diseases, time, and the individual response to meds is so complex, it is certainly hard for most doctors to understand, much less a patient.
So patients keep looking for someone to take them by the hand and lead them thru this maze. Don't we all want this? So we go to the big name institutions and they fail us.
It took me quite a while to learn about tickborne diseases, and I still don't get all the complications that keebler has mentioned to where I could act on them. This is with some scientific background. Pity the poor people who have no such background.
I don't think any one doctor will have all the answers. Lyme docs are snowed under with patients and being persecuted many places. And they are not getting the research help they need from the research establishment. And yet they still do a better job than places like Mayo with all those specialists on hand and their own labs!
Each of us needs our own advocate to lead us thru the process. Lacking that, the best any patient without a science background can do is to take one suggestion at a time from other patients, like on this thread, and try to see if that might be worth exploring. Your response to meds sounds like the first one to look at.
We all want what you were looking for at Mayo. Unfortunately, it isn't there.
[ 03-31-2013, 06:42 PM: Message edited by: Robin123 ]
Posted by lax mom (Member # 38743) on :
Well said poppy. Well said.
Posted by Catgirl (Member # 31149) on :
I would stay away from tufts too. They suck.
Posted by canbravelyme (Member # 9785) on :
It only takes 3-4 years to get a medical degree � as we each get well, becoming MDs is an option to consider...
Posted by Lymetoo (Member # 743) on :
They are so lame. I'm glad also that they did not subject you to a spinal tap. Can't believe they didn't rush to do that.
I agree with lax mom... maybe you need another Dr. No need for testing again several months later. Good LLMDs know that.
Posted by Spirocheta (Member # 37889) on :
Okay, I'll try and hit on all the questions and answer. I've taken a bad turn since coming home from Mayo. Probably from the stress of it all, but my brain is really failing, in particular my memory. I feel like if I don't do something soon I am going to end up in the psych ward because I just freaked out and lost it, and then that is all they will focus on.
Re: The Lyme doc in NYC- he DIDN'T actually retest me. He only tested me for other coinfections that hadn't been tested for yet. He believed that we should just proceed to IV ABs, and that I needed the neuropsych eval.
I am waiting for the results of that test. It was done by a LL neuropsych, and it will take a month to get the report back. So, in another week I will know the results. I saw my raw test scores and I have lost a ton of short term and working memory, as well as processing speed.
Keebler- There is a Mayo clinic app now, that lets you read the doctor's notes submitted after evaluation. I went back and checked both of these, and thankfully, there was no mention of anything psych-related, or even the "code words" in the report, so I hope that it stays that way.
I do have to say that, when I was retested for Lyme (and I have been MANY MANY times in the past), something DID get helped, because I have always consistently tested the same bands positive over 6 years. For the first time, I only tested IgG 66 positive out of ALL the bands.
Doesn't that band correlate to a coinfection?
Here is how careless they were: I provided them with a CD copy of my spinal tap results, along with the MRIs and such. They kept saying, "Oh, she had a spinal tap, but we can't find the results." Same with my positive Lyme blood tests. They "couldn't find the results," I knew I had them, and when I went back with them after digging them out of my file, they said they no longer needed to see them.
Two big questions:
-PORPHYRIA: This has been thrown around by my neurologist at home, but I have never tested positive for it. However, I question a lot of things because so many of my symptoms began when I took innocent antibiotics that had nothing to do with Lyme, even. (Diflucan?!) Sometimes I had reactions, sometimes I did not. I'm assuming it depends on the dose and the length of the antibiotic.
What kind of tests are there for porphyria? How would I know if I had it?
RE: Antibiotics: Has anyone heard of intercranial hypertension as a result of doxy, especially in people who may be sensitive to ABs? I am pretty sure I had this, and I don't know how much of this contributed to the damage either.
Also, I was told I had a slightly positive ANCA titer. They did an MRA of my head and said it was normal, and so they decided NOT to do another blood test for the titer, saying that it was "probably a fluke." What is this? I know it is some kind of vasculitis, but isn't it irresponsible to discard it?
poppy is right. I do need an advocate. I could be my own until the brain injury stuff occurred. Now I am going downhill fast and I can't figure anything out. I don't know what to do and I am becoming even sicker physically as well (in the first month after stopping ABs, the symptoms went away, but now they are returning).
I don't want to get thrown in a psych ward. I also don't want to give myself more brain damage from antibiotics. But I don't want Lyme and co. to give me more damage from not getting treatment either.
I feel like I'm going to fall through the cracks and become a casualty of the medical system. I don't have any hope left.
Posted by canbravelyme (Member # 9785) on :
Did the LL neuropsych have recommendations with respect to course of treatment? What did he say about your increase of symptoms during abx treatment?
Have you looked into neurotoxin detox protocols? Dr K created a PDF that is easily findable on the web (it involve chlorella).
Did you try taking an antihistamine when you took the abx? Two separate LLMDs have suggested this to me to curb the symptoms, if it's a Herx.
GiGi has been suggesting MMS for detox; the protocol looks complicated to me (though my bet is that it is less complicated in practice than from what I read); there is also some controversy about it � I'm sticking to chlorella until MMS has been used by more people / I get compelling evidence to use it over chlorella.
This disease does kill people. Every time I think of Steve Seibert, I get a little chill bc I have, at times, been nearly or as sick as he was. This disease destroys careers; being connected to a personal social network; relationships. That said, if you're persistent, and use your common sense, many do get better, even if it's not 100%, and even if it takes an inordinately long time (myself included).
Realizing the mainstream medical community is abandoning one is a big disillusionment; it takes time to get one's head around the difference between our idealized views of people, and reality. You'll get your head around it.
Oh and if you decide to see a shrink, try to find one on www.mindfreedom.org � you think we've got problems? I have a family member with a psych diagnosis, and it's a constant battle to prevent having their rights violated.
XO
**edited name of LLMD**
[ 03-31-2013, 03:11 PM: Message edited by: Lymetoo ]
Posted by OtterJ (Member # 30701) on :
Spiro, I had the worst headaches just over a year ago that lasted for about 8 weeks. Constant headaches.
The only thing that helped was steroids. I know everyone here on the boards is going to freak out, but I had inflammation in the vessels in my brain.
I was barfing and couldn't keep anything down and thought about walking into a snowbank b.c. I couldn't deal with the pain.
I have to take daily steroids because my body doesn't make natural steroids and there isn't an option.
The only time I had relief was just after taking my morning dose of hydrocortisone. Ine if the biggest problems with lyme is inflammation.
So far, there aren't good ways to deal with it. This worked for me and was on minocyline while taking high dose steroids.
You didn;t say if you had a SPEC scan. It can tell how your brain is being perfused and active. If you have areas that don't light up on the scan,they have empirical evidence that something is going on.
You need to get a hold of a lyme literate neuro. Ask for one here at the boards.
I understand the fatigue.
Do you have a lyme support group where you are? I enjoy my Portland, OR group and they are truly supportive and knowledgeable.
Take a tiny breather and make a list of things to do. It gets the procrastination factor out of your head and makes baby steps manageable.Let us know how you are doing.
Breaking this up for easier reading for many here -
[ 03-31-2013, 06:45 PM: Message edited by: Robin123 ]
Posted by Keebler (Member # 12673) on :
- Spirocheta,
Doctor notes TO the patient are very different from the notes that the patient is not supposed to see. The doctor will not make available to the patient the full extent of their notes.
I saw mine my accident.
A few year later, I had to schedule with a patient advocate to look over other notes from a university hospital where I had seen several doctors.
I was shocked at what was in my file regarding the doctors comments about my case.
The code term "difficult patient" had been marked in large letters inside the cover to one file. I asked the advocate why it did not say "difficult CASE" as I was never difficult in my demeanor. She explained that "difficult patient" is a code for a malingerer and complainer.
It explained why, after that, no doctor would take me seriously. My file haunted me.
Even standing alone, what you were told is known to be "code" for other doctors who may see this later. They will interpret it in the worst way, most likely.
It's like the term GOMER (and similar ones). Doctors will note on "difficult patients" charts in the ER, they are a GOMER and all doctor who later see the chart will know it means "get out of my emergency room" kind of patient.
In the regular medical world, where royalty from around the world come for the toughest cases, all doctors bow down to Mayo. If something is wrong, "Mayo will find it" is their mantra.
To be told by Mayo that they can't find what's wrong - or even that there are not tests for what ails one - well, be very careful to whom you say that as any regular doctor will then assume they just dismissed you.
But, as for going to any regular doctor, that does not seem a likely action at this time since
most doctors are simply not able to treat someone with the combination of tick-borne infections as you have so you would probably still not benefit unless they are extremely lyme literate and then they will certainly understand that Mayo just pushed you aside.
Sadly, now they also have a case a patient self-reported antibiotic harm regarding lyme treatment that they would love to just "outlaw" anyway. They can use that even without your permission as long as they do not reveal your name.
Just in case you see any of the doctor you saw, or any in their department, or even any from Mayo coming out in the future with such an article, just keep your eyes open.
I've seen many such very short notes or abstracts throughout the years of patient reports of this or that reaction to a medication.
There have been several about lyme, too, where the patients reported feeling worse with Rx -- because the process was misunderstood or the pateint had the wrong Rx or not enough liver support due to inability to metabolize toxins.
Still, I hope you have a sense of relief that other things were not discovered. Still, please be aware that the combination of tick borne infections are plenty for anyone to have on their plate and it takes the best LL doctor to sort it out, in time.
I voice my thoughs here - not to sadden you (although it may and I'm sorry about that) . . . but so that you can become more aware of dismissive treatment practices and terms that I wish I had known long before.
Even if they say it with a smile, a dismissal is a dismissal. Even if they are nice about it and personable or crack a joke about the day's events -- a dismissal by Mayo can have a boomerang effect.
And - really - even aside from lyme I do wish they had done much more investigation. I cannot believe they did not even consider porphyria. They are good with that, actually, and they most certainly - without a doubt - should have assessed you for that. Instead, they were nice to you.
I so hope you find the best LL doctor(s) -- as you set sail for the next leg of your journey in this "new" world.
Take care. -
Posted by lax mom (Member # 38743) on :
GOMER along with MUPS (Medically unexplainable symptoms)
Posted by Keebler (Member # 12673) on :
- Q: "probably a fluke." What is this?
It means they will disregard the information.
"Fluke" has various defintions but you can look it up for one better than I can come up with. I just can't think of how to explain it to someone who has never heard the term before.
For sure, not a fluke as in a liver fluke.
The "fluke" they are taking about is more like the the detail had been wrong - or did not mean much - or just a one time thing that would not likley happen again. -
Posted by Keebler (Member # 12673) on :
- Q: "intercranial hypertension from doxy"
Actually, doxy has been seen to help reduce pressure in the brain - at least for some.
Brain pressure, noted as Intercranial hypertension (high) &/or hypotension (low) can be a result of brain infection. The INFLAMMATION that come from infecion can stress blood vessels throughout the body.
Changes in the "brain pressure" are common for those with lyme.
A SPECT SCAN will help here to "see" but, as for the cause, any of the tick-borne infections that you have can do that. And brain pressure can be "a moving target" that is to say it can change. Still - a SPECT scan can show patterns.
And in those with "CFS" and other similar conditions (regardless of the reason) hard physical exertion can have a marked effect on the brain for those with swelling.
The NIGHTENGALE FOUNDATION in Canada has seen this with "CFS" patients who exercised a day and also two days before the SPECT SCAN. Those who did so (with aerobics) had scans that showed major differences (and not good) in brain pressure.
What helps?
MAGNESIUM is a wonderful helper for either high or low brain pressure - as are other supportive methods often suggested by holistic LLMD or LL NDs.
Ultimately, treating the infections adequately with proper support. However that is done. -
[ 03-31-2013, 03:20 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- lax mom reminded me that there are other "codes" that doctors use among themselves.
Also, though, it's imporant to understand how doctors think, for better (and that does happen) or worse.
Topic: "DIFFICULT PATIENT" label - HOW DOCTORS THINK - "code" terms -
Posted by Sammi (Member # 110) on :
I am also sorry you did not get the help you need.
Was your spinal tap done to test for Lyme?
Do you see either Dr. R. or Dr. M.?
Posted by poppy (Member # 5355) on :
I think spirocheta represents a lot of patients who have a hard time coping with the complexities of tickborne diseases and related issues. This is a sink or swim situation and very many folks are just not equipped. Why should they be, why have a dog and do the barking yourself?
It is just very sad to see this happening again and again to patients.
Keebler is right about articles being written about lyme patients, trying to diss them and their doctors. There was one some years ago about a poor woman who had trouble with her IV line. She could not find an in-state lyme doc so had no local support. Went to a local hostile medical place for the infected line. Died from the infection.
This was used to blacken the patient and doc reputation. Nothing said about why the patient had to go so far to get treatment. Nothing said about the inability of the local place to cure the line infection. Just disgusting. This was written by a Mayo Clinic doctor.
[ 03-31-2013, 06:40 PM: Message edited by: Robin123 ]
Posted by poppy (Member # 5355) on :
Another thing: you can look up the side effects of any drug you are on. Internet great for this. Pharmacy printouts are not very thorough. Yes, doxy can cause "benign intracranial hypertension." If I knew doxy was the cause of such a symptom, I would stop taking it. Good to know side effects, just don't get too paranoid and think all of them might happen.
Between side effects, herxing, variable symptoms, it can be very hard to figure out what is going on. For instance, it could have been intracranial hypertension or it could have been a babesia headache. Or perhaps the hypercoagulation caused by lyme infection may cause a headache. It's enough to make a strong man weep.
And if you do a search of the archives here for porphyria and related subjects, several times in the past people have posted what tests and where to get them done.
[ 03-31-2013, 06:07 PM: Message edited by: poppy ]
Posted by Keebler (Member # 12673) on :
Topic: Drug Interactions Checker (and also for supplements) -
Posted by Keebler (Member # 12673) on :
- Spirocheta,
I'm not sure about others here but suspect they may feel similarly (even if I can't explain this as I may like to).
One reason you may feel a strong reaction from replies here is that many of us have BEEN to Mayo or other university hosptials that were / are lauded as the best.
Many actually have been built on a hill and in more than one city, the medical center is just called "the hill" with all the religious hope wonder and certainty that miracles occur there.
Many of us has high, high hopes of finding exactly what you went in search of at Mayo. That did not work out well for most. Often, the opposite with medical malpractice and even abuse (even when delivered with a smile).
So, if you sense that we may be forceful with our pleas for you to not go -
- and even now upon your return, not at all saying "told you so" but hoping that UNDERSTANDING more about lyme (and RMSF and all the other TBD that you have positive tests for but have not yet received adequate comprehensive treatment) . . .
Well, if you sense we are passionate about our advice, a lot of that likely comes from our pain, our failures with seeking help from all the wrong places. I know I want to help others avoid that. The ramifications can be huge.
NOT understanding all I could about how lyme (and all the other coinfections, liver stress, adrenal damage, etc.) really hurt me early on. I was grasping as straws when, all along, with the TBD, it all really did make sense.
I just could not wrap my dizzy brain around it - still wanting to believe that my best hopes lay with the univeristy medical systems. And they just gave up on me, even literally kicking me out during seizures, more than once at more than one hospital.
I was wrong about thinking these medical centers could actually help - or would search deeper if they did not know. Nearly deadly wrong about that.
Regaring those with chronic stealth infectins, it's a terrible culture that permeates the entire univeristy medical system in the U.S.
So, please find a LL doctor who has the education, the experience and the capability to address your needs -- or find a team as it will likely take a team.
And, if that is just not possible (as I know all too well), you will have to become better educated about each of the TBD you already know you have.
And better educated about the things that can help you get through the rough patches, the "herxheimer" support, etc.
I dont' mean to sound accusatory but can't think of how else to phrase those things above. It's just a fact, not a judgement. There is so much to learn, though, and patients should not have to do so much to save their own lives as it's far better to have a good LL doctor to guide, if at all possible.
I wish the best for you but have to say that your experience has brought up such intense pain for the simiar searching and dismissals that it's still very hard to deal with it.
I know you are in a tender place. Take good care of yourself as you find your way. -
Posted by Spirocheta (Member # 37889) on :
I understand, and I have not found any of the information to be critically aimed at me or judgemental here, only informative.
I really do not know much about the medical establishment politics in particular (although I did watch "Under Your Skin" a few years ago).
I honestly don't know how I lasted 5 years with these symptoms before actually getting aggressive for help. I think the cognition/brain damage is what finally destroyed everything for me. I'm still in bizarre physical pain that will not cease either. It's just the lesser of the devastating symptoms at this point.
I did see the word "complex" used a lot in the report. That alarmed me. It sounded a lot like "difficult." Although they kept insisting how "pleasant" I was in the report as well.
The LL neuropsych report will be finished on the 7th, I believe. So I will know his recommendations. I hope he has enough sense to control for the fact that I had a high IQ prior to the test results. (They are still above average, but there are glaring deficits in areas that make no sense, and my IQ has dropped about 5-10 points in 3 months!) I keep getting the run-around that things are okay because I'm scoring "above average."
A LL neurologist is different than getting a LLMD, correct? Because I do see one in NYC already. Dr. R., not Dr. H. to whomever asked. But perhaps finding an LL neurologist would be beneficial as well to handle my neuro complaints (independent of infectious disease and brain damage ones?)
My rheumatologist tested me for porphyria, I believe, and the results were negative. But I think there is more than one kind.
Nobody will refer me to an endocrinologist, for whatever reason. So we have no idea what is going on there. However, I haven't really felt certain biochems in the adrenaline family for months. (To put it in perspective, I was accidentally in the crossfire of a gun battle- I got lost in the city. And there was no adrenaline or sense of danger, which scared me more than the gun battle itself.)
I apologize if my circumstances have brought up bad memories in others, at least if that's what I'm understanding from the posts above? I am having a hard time figuring things out.
Also- LLMD ordered a SPECT immediately. I'm still waiting because my insurance company delayed proceedings for a month, then chose to deny the claim, saying they would not fund it because it is not medically necessary. So I need to figure out another way to get one. They say SPECT scans can show the most about the type of damage and what it is caused by.
Posted by canbravelyme (Member # 9785) on :
It's important that the SPECT is ordered by an LLMD. Apparently, SPECT scanners are not calibrated to a universal standard � this I learned after the fact, when my scan covered by insurance was useless to the LLMD...
I think they do them at Columbia?
Posted by lpkayak (Member # 5230) on :
i was told columbia was best and got mine there
Posted by Keebler (Member # 12673) on :
- Don't be concerned that I said this brings up so much bad treatment from the past. I had said that only so that you might better understay why so many are so vocal about this.
We choose to help, even if it might be hard for us to remember what we went through - are still going through. We want to change for better others' experiences. -
Posted by Keebler (Member # 12673) on :
- I would not spend money on a SPECT scan, really. It can be of help but if even one dollar would be taken away from what you have to treat, I would not do it.
It won't show much that any good LLMD could not tell by your history, symptoms and clinical presentation.
There are only two LL neurologists in the whole U.S. - maybe just one.
You don't need a bunch of different specialists -- that's not what I meant by a team of doctors.
A LL neurologist would not be the treating doctor, anyway.
Endocrinologists who are LL are also very rare.
I don't think you need a bunch more tests. You already know you have 3-4 TBD. None has been adequately addressed (going by your past posts and timeline).
A good LLMD or LL ND -- or both - is the best place to begin.
You might also seek out a LL ND experienced with RIFE machines. -
Posted by Lymetoo (Member # 743) on :
Keebler.. A SPECT could be very valuable for her.
Posted by Keebler (Member # 12673) on :
- IF should have been capitalized. IF you have to use all your money on that and have nothing left for treatment, that's what I meant.
If the spect is affordable, indeed, it may help. But since insurance denied your request, it's likely going to cost a great deal of money.
I've gone broke for paying for tests that told me what I really already knew and were quite within the research & observations for those with several TBD.
Three QEEGs were just an example. All supplied verification that my brain waves were slow and that seizures came from a certain place in my brain during certain tasks.
Still, the regular medical community did not accept any of that. LL literature and CFS literature speaks to the "slow brain waves" so it was nothing new. My symptoms all pointed to that. Yet the tests did help me with validation. But it took money away from treatment that I missed out on.
As for IQ, it's very common for IQ to take a dip. Several LL authors have written about this. Happened in my case, too. Went down 20 points but still within normal range so it was not seen as a big deal by those who were not LL. -
Posted by Keebler (Member # 12673) on :
- Lightbulbs continue to light up, possibly connecting more dots.
About IQ testing. Actually, the tests may show a drop in score but it may not be reflecting a true change in IQ but a change in language processing and retrieval which can take a dive due to inflammation, infection, fatigue of chronic illness.
As for a neuropsych test, UNLESS it was done in the style of Sheila Bastien, PhD, it will not likely be as helpful.
There are some LL authors who have written about this as well, Bastien's work is more about how the MM test (it has 4 initials, I think) must be altered for those with CFS. That also applies to those with lyme. You can google her name.
Lyme and "CFS" patients really do better on tests that are not ones most typically used.
I am just too tired to elaborate but, again, when testing is done by those not LL, the tests are often not going to supply the best view -- or be able to be properly interpreted.
Another research of brain function, Myra Preston, PhD has done extessvie work for CFS and brain funtion and that also applies to those with lyme. -
Posted by Lymetoo (Member # 743) on :
Well, I wouldn't want to pay for one myself, but that is her decision.
I wouldn't worry about a 10 point dip in IQ either, but that is just me.
Posted by Jessiep (Member # 35399) on :
Have you tried an abx challenge to see if you herx? Seems like a worthwhile thing to try.
Posted by aiden424 (Member # 7633) on :
[ Consensus: HOLD THE MAYO.
The ID doctor said that I "probably have a disease that hasn't been scientifically discovered yet, and therefore cannot be tested for." She agreed that something terrible happened on December 28th,
That is exactly what the ID doctor told me!! My date was April 16, 1986, and I was 27 too!
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