posted
there is no easy way to summarize my husband's case.
it has been 3 years - 10 specialists - 1 week in Mayo clinic and still no diagnosis.
about a year ago we did have a positive lyme test after we left all the docs that kept scratching their heads... because we thought it was lyme and took ourselves down that path.
went on doxy iv for 3 months - symptoms got better but he developed pancreatitis and was hospitalized 3 times in 3 months for a week at a time.
what is going on here?
treating doc never heard of this happening and thought they lyme may be in the pancreas now. we thought he was a quack and went to another LLMD
this doc ran a positive test also and put him on oral abx. we weren't confortable with him either so we went to a another more "high profile" LLMD.
she had a negative test and said no it's not lyme, the lab the 1st dr. used is "controversial" it's some sort of auto-immune disorder, it is very serious, etc. and we went back to all the old specialists to let them know what was going on.
Vasculitis, Wegener's disease, auto-immune disorder, etc... could not get a diagnosis
then we tried to coordinate them all to actually talk to each other and figure out what was going on but i'd have better luck teaching pigs to fly.
so.. on to Mayo clinic - dx is chronic pancreatitis (idiopathic) - possibly from high triglycerides, vitamin d deficiency, possible sleep apnea.. fibromyalgia.. possible history of undiagnosed sarcoidosis, but nothing solid.. lyme test was negative. now I can kick myself for not insisting at Mayo the possibility of false negative...
but at that point we were told it wasn't lyme, so fine it's not.. their the doctors right?
saw a pain management doc today, he is going to do steroid injections for the pain in his neck and back (that's been the last 5 months). surely it will move somewhere else soon... and we mentioned the lyme and he explained about the false negative results and now I am convinced this may be the case - huummmmm....
if there are 75 symptoms of lyme he has 70 and the other 5 refer to women! so what is going on?
we are now going to a super expensive "high profile" LLMD who is I believe one of the best.. she is also a Rheumotologist and Pathologist so that should work well for us to get to the bottom of this...
anyone else have similar experiences?
thank you for reading... i could write a book actually.
[ 04-14-2010, 12:09 PM: Message edited by: sandyk ]
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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What lab did the lyme testing?? False POSITIVES are rare... false negatives VERY COMMON.
Mayo is PATHETIC when it comes to finding lyme.. they don't WANT to find Lyme.. now way, Jake!
That said... chronic pancreatitis is serious... I have trouble taking antibiotics myself now due to having taken them for 4 yrs in Lyme treatment.
I haven't taken abx for lyme for more than 5 yrs now, but when I've had to take them for other things... my pancreas and bile duct area get inflamed.
STEROIDS are the very worst thing you can give to someone with Lyme...so you need to find out what is what before allowing them to give him a shot.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto: STEROIDS are the very worst thing you can give to someone with Lyme...so you need to find out what is what before allowing them to give him a shot.
Ditto: Mayo is PATHETIC when it comes to finding lyme.. they don't WANT to find Lyme.
Rheumatologists also don't believe in or understand lyme or tick-borne infections - they usually declare it to be fibromyalgia or depression. Fibromyalgia is often undiagnosed Lyme. Depression is just one symptom of lyme, etc.
Please get to an ILADS-educated LLMD (Lyme Literate Medical Doctor). I'm so sorry for all this but you need to know that this story is not at all unique. Hundreds, if not thousands of lyme patients have had the same horrible experiences with uneducated doctors.
A good LLMD will know how to sort it out.
Good luck. There is hope. Others have gotten better with the right care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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massman
Unregistered
posted
I asked the false negative question a good number of months ago + someone posted a source for the combo of Elisa + Western Blot being 45%.
Listen to the above and STAY AWAY FROM STEROIDS - A LOOOOONG WAY.
Many docs think or imagine that they know a lot and most DON/T.
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posted
Everyone, thanks for the input. The lab used was IGenex in CA, if you google it you will find stuff on the "controversey"...
Also, I CANNOT believe the comments on Mayo... WOW! I'm thinking oh yeah their the best - why didn't they look further..?
the more I read Lyme really needs to be a clinical diagnosis... hello MAYO!!! the test was negative but look at the symptoms. OH I am so mad.
When this is all said and done I wish I could get all the doctors in a courtroom and I'll be the prosecutor! ha ha.
Thanks also for the advise on not doing the steroid thing right now..
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I had my WB and Elisa done through Mayo Clinic, they came back negative. My new LLMD told me yesterday I am a walking textbook case of Lyme Disease.
This is before the Igenex tests, and only after he had looked at my other blood work (CBC, positive ehriclia), and my 2 page history I had written. He has started treating me now with more abx and isn't waiting for the blood results.
Yeah and I second (or third?) the steriods. I was unaware of this, well I actually didn't know it was Lyme yet. They put me on steriods for my breathing...my symptoms got WORSE, so much worse! No steriods!
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Could you consider putting Mayo in your thread title please.
I do think the ties that bind could be leading some to not diagnose.
Just my suspicions after reading so many that have gone to various clinics across the country and been mislead the same way.
Some being critically harmed in Lyme and set back years for their treatments of Lyme patients.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Oh my, I have a very sick feeling in my stomach. We left our LLMD after going to another one who was supposed to be "better" she told us her tests were negative from Medical Diagnostic Labs, she told us if he had lyme she would know, she never uses IgeneX.
I just read my Mayo bloodwork and one of the paragraphs on the summary says. "history of lyme disease. The patient's lyme serology was negative. The patient also had a positive ANA with a history of positive anitocardiolipin antibody, but he was seen by Rheumatology who did not feel that the patient had evidence of autoimmune disorder".
I looked up the false negative % of lyme serology and now I am freaking out.
3 months of doxy a year ago and nothing since, his symptoms are SO MUCH worse and we just keep saying "can you believe it wasn't lyme"?? But I actually think it is.. I cannot believe this - I am about to cry and leave work. Man.. what a MAJOR setback. Unbelievable.
I just called Mayo and asked for a consultation with a Lyme Specialist - I want them to review all the records and give their opinion. Waiting for a call back.
I have my appt. with (are we allowed to say Dr's names here?).. the LLMD in West Caldwell, NJ who I am taking a second mortgage on my house for but she is supposed to be one of THE BEST. She is an IM, Rheumotologist and Pathologist.
Oh my... I really feel for you all. I am reading everything now to get back up to date on everything. (I do it because my husband is so completely depressed and sick of everything.. not to mention computer illiterate.. I print everything for him.
Thanks for your responses.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
- You said: " . . . I just called Mayo and asked for a consultation with a Lyme Specialist "
MAYO DOES NOT HAVE A LYME SPECIALIST. GO ELSEWHERE.
You need an ILADS-educated LLMD. Mayo does not believe in lyme, they will likely NEVER believe in lyme and they are not about to learn about it.
ONLY an ILADS-educated LLMD can help you. You will NOT find one at MAYO. -
[ 04-14-2010, 01:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players . . . The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . .
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
Sections regarding self-care:
Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES
and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.
=====================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
I am going to a new LLMD on 5/6 I believe will get to the bottom of it.
I just don't want Mayo off the hook. I will keep calling until they get someone else to look at all of the tests, bloodwork, etc. after spending a week there (NJ to FL!)... and I want them to say it is not Lyme. When I do get my Lyme diagnosis, I will keep calling them until they acknowledge their failure to diagnose. May be pointless but I AM SOOO ANGRY.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
- I am sorry this is so upsetting. Still, the negative power around lyme can literally destroy as much as the spirochete itself. We all have good reason for anger. We all have suffered abuse and trauma from a long list of "experts" who were supposed to be educated and have our health as their driving force.
* My concern is that if you keep after Mayo, they could ruin your LLMD. Seriously. Even one whom you've not yet seen. They have their ways to find out.
* It is nearly impossible to get a positive CDC lyme diagnosis. And, even if one did, the IDSA thinks nine days' treatment will cure it. So, you are not going to win with Mayo. Not with the ridiculous IDSA criteria for diagnosis or for treatment. This is bigger than the mafia. Really. In a way, it's its own mafia.
They will NEVER acknowledge their failure with lyme as they really have no clue, first of all. Secondly, their attorneys would never allow them to say such a thing.
Thirdly, as long as the IDSA has their stronghold, Mayo is simply following the IDSA.
It's best to read the book CURE UNKNOWN before you proceed to ask Mayo for corrections.
And BAKER's DOZEN. Then, you'll have a better background.
I understand the anger. That energy would be best channeled into power to first fight this horrible disease. THAT requires all most of us have.
If you are stranded in a churning ocean, no help in site and sharks are swimming all around you, using all one's energy to direct anger at the sharks will not help.
Lyme is an immediate danger. Yes, it is constant - yet always immediate. Getting safely to shore is the goal.
There are activists with whom you might share your Mayo experience so that they have another one for their file. Let the activists take it from here so that you can focus on the matters at hand. Then, if you have extra energy, you can join hands with the lyme advocates.
I say this is deep understanding as I've been there - you will need all your energy just to learn and fight lyme. Treatment is very complex and just being a lyme patient - or a family member - is like being tossed into a graduate level medical program with double course load - told you have to catch up by tomorrow.
Getting better is the best revenge. I hope you can find what you need to make that happen. It's a long and rocky road, so I wish you and your husband the best of luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you. I will take your advice. Appreciate it, I needed that.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Keebler
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posted
- Be sure the LLMD you see in April is ILADS educated. One you described way above - who said that the tests were negative so, therefore, not lyme - she was NOT ILADS-educated.
[ 04-14-2010, 03:57 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Hoosiers51
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posted
Mayo's criteria for a Lyme diagnosis is VERY strict. It's the same criteria most doctors use. Unfortunately, it leaves a lot of patients out, when it should include them in the Lyme diagnosis.
So even if some of his tests come back positive for Lyme, Mayo will probably tell you he still doesn't have it, because they will often require 2 tests to come back positive....the Elisa AND the Western Blot.
Furthermore, even if both of those came back positive, Mayo would tell you that since he has had 3 months of Doxy IV WHILE ill with this mystery illness, that it couldn't possibly STILL be Lyme. So even if he did test positive on 2 tests now, they'd still say Lyme was impossible.
OR, instead of giving you that explanation, which wastes too much of their time to explain, they will just tell you he doesn't have Lyme because he doesn't meet the criteria. Part of the criteria being if you are treated for Lyme for a short time and still sick, it's definitely not Lyme.
So as you can see, there are many ways they can tip toe around the issue, telling you he doesn't have it, when in fact there is evidence that he does.
It's a bunch of bull, the way Lyme diagnosis works. Leaves a lot of people out that have it. Most doctors believe all that bull and that's the system they use.
In my opinion, Igenex is a reputable lab. I tested positive on Igenex, and I later had even more bands come back from a lab that is more "mainstream." I've also had some negatives of course. The testing is finicky.
Find a GOOD LLMD. Sounds like the one you saw wasn't too great. Best of luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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lymebytes
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posted
If I could fly a banner it would read: NEVER DO STEROIDS - EVER!!
Steroids nearly killed me. Read my story at the bottom of this post, click on the link then click Author's Bio.
My LD tests were negative through standard testing that ALL these hospitals and mainstream labs use.
He needs to be tested through Igenex for Lyme and co-infections and see a good Lyme literate Md. Where did you get your LLMd referrals?
Go to ILADS.org - read both pages of "Basic Info" it tells why the tests used are not reliable. You can also click on "contact" and email or call them for LLMd referral.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto: Steroids nearly killed me, too. Many times, different forms but all were disaster.
Wish they had even considered lyme first but I live in a state where it is declared to be non-existent.
==============
" . . . about a year ago we did have a positive lyme test . . ."
I would test for other tick-borne and other chronic stealth infections but no other lyme test is necessary. It does not just leave. And even with 3 months if IV doxy, if Rx for the cyst form were not used, treatment often fails. And, even an intense IV treatment for 3 months is not long enough.
I'm just crying, from the torture that I see repeated - many times a day - day in and day out even just here where people come who are getting educated. I shudder to think of those who don't know enough to look for the truth. You and your husband are just one of thousands of families who have been abused by the system.
But, don't give up. Yes, the pancreas problem does pose complications.
Has your husband consider using a RIFE machine? Complementary methods for support? A good LL ND would know how to help the pancreas. ND = naturopathic physician.
I'm think that Gymnema Sylvestre may be of help. Lyme really can clobber the pancreas, so much so that diabetes can be a result.
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!
. . .
Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
end quote. - full article at link above.
====================
Poster's voice again:
However, temporary use of very LOW (sub-clinical) dose hydrocortisone (Cortef) has been used as the last resort for lyme patients close to adrenal failure.
The adrenals (and the entire endocrine system) really takes a hit with lyme. Adrenal failure can become fatal so, if nothing else is working, Cortef can be a life-saver - or prevent a patient from reaching a critical stage.
Under the care of a LLMD, this can give the adrenals enough of a rest in order to start healing. However, usually adrenal support measures known as adaptogens are first tried. For most, adaptogen support is enough (along with good self-care).
Those include Eleutherococcus senticosus, Ashwagandha, Cordyceps or Rhodiola (starting slowing with a low dose as that can be too stimulating and too much stimulation is damaging to adrenals).
Vitamin B-5 is also a helpful support for adrenal function as is Fish Oil. Curcumin can help lower stress in the body, thereby being a support to overworked adrenals. -
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Pinelady
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posted
Steroids suppress the immune system and may
actually let Lyme have free reign to eat and
destroy all it wants without any hindrance what so ever. Many who have been on steroids have to (wean) off before treatment can begin.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sutherngrl
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Member # 16270
posted
As the saying goes......"Hold the Mayo"!
My cousin went to Mayo with lyme symptoms and they diagnosed him with some really rare genetic disorder for which there is no cure. They said it would go away on its own in 5 years or something crazy like that.
He has 200 wooded acres that he spends every single weekend in and has pulled many ticks off himself.
On top of that he told them that his cousin(me) has LD and since his symptoms are so similar he figured he might have it too; so guess what they said????? They said that since he has a rare genetic disorder and we are cousins that they were 99% sure that I don't have LD, but have the rare genetic disorder too.
In other words they undiagnosed me with LD without even seeing me or any of my medical records. How insane is that! And I have an IGM CDC positive test for LD.
Anyway, so now my cousin is confused and is not getting any treatment for anything. Thats Mayo for ya!
Please seek out a real LLMD as soon as possible!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Not trying to start controversy here, but I see the LLMD in West Caldwell and she is great. She has been treating well before many of the ILADS docs have and doesn't necessarily agree with everything they say. That is ok with me because I do not believe they are all of the same page so to speak and are not "gods."
Either way, she is an excellent doctor who is very thorough and is not scared to treat aggressively. It's a plus that she is a Rheumatologist as well because she is knowlegable about Fibro and Chronic Fatigue. She is not a big fan of Igenex, but uses MDL and Stonybrook, which are both good labs.
Posts: 157 | From connecticut | Registered: Feb 2007
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METALLlC BLUE
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Member # 6628
posted
quote:Originally posted by sandyk: Oh my, I have a very sick feeling in my stomach. We left our LLMD after going to another one who was supposed to be "better" she told us her tests were negative from Medical Diagnostic Labs, she told us if he had lyme she would know, she never uses IgeneX.
I just read my Mayo bloodwork and one of the paragraphs on the summary says. "history of lyme disease. The patient's lyme serology was negative. The patient also had a positive ANA with a history of positive anitocardiolipin antibody, but he was seen by Rheumatology who did not feel that the patient had evidence of autoimmune disorder".
I looked up the false negative % of lyme serology and now I am freaking out.
3 months of doxy a year ago and nothing since, his symptoms are SO MUCH worse and we just keep saying "can you believe it wasn't lyme"?? But I actually think it is.. I cannot believe this - I am about to cry and leave work. Man.. what a MAJOR setback. Unbelievable.
I just called Mayo and asked for a consultation with a Lyme Specialist - I want them to review all the records and give their opinion. Waiting for a call back.
I have my appt. with (are we allowed to say Dr's names here?).. the LLMD in West Caldwell, NJ who I am taking a second mortgage on my house for but she is supposed to be one of THE BEST. She is an IM, Rheumotologist and Pathologist.
Oh my... I really feel for you all. I am reading everything now to get back up to date on everything. (I do it because my husband is so completely depressed and sick of everything.. not to mention computer illiterate.. I print everything for him.
Thanks for your responses.
Actually, the more you talk to more it sounds like Dr. G in NJ. Or Dr. F in NJ. It could also be Dr. Patricia Coyle in NY. She considers herself an LLMD but she "never" diagnosis the disease correctly and doesn't follow any ILADS protocols. She follows the IDSA protocol, and doesn't lend credence to Igenex, MDL or any other "credible" laboratory. So who did you see? Which one? P.M. privately and I'll help you by providing you a list of care providers. I'll also tell you what I know about the doctors you saw (If they are even on my list, which they should be if they truely are (or were at one time) real deal LLMDs.
The list I have has "patient comments" -- so that'll help you better understand your choices from other patient points of view. Also, make sure you follow the advice given at the top of the list. Choosing the physician requires doing some "investigation" by phone with the physician and or their office staff.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by sandyk: [QB] Everyone, thanks for the input. The lab used was IGenex in CA, if you google it you will find stuff on the "controversey"...
The IDSA considers them a "controversial" lab, but they're actually not. They're just very good at what they do. They have abundant documentation supporting accreditation across many state health departments, and have an official CLIA credentials. I can get you all the official documentation if you wish.
The reason Igenex is "attacked" is because those who run it had family members who fell ill (before they began the Laboratory) that got sick with Lyme Disease and some associated infections. If you were a medical doctor, and family members got sick, and it was the early 1990's -- when no real solid testing existed, and no physicians were well trained and easily available, you'd probably start your own laboratory too -- especially if your background medical training was in pathology and immunology.
Hence, the beginning of Igenex laboratories. Make sense, doesn't it?
What bands did your husband have. I'm well versed in reading them and can tell you whether he in-fact has Lyme Disease. (I'm not a doctor, but I may as well be with my 20 years of medical training.) Sad, and ironic that I learned more from college and university text books while in bed than those sitting in lecture halls. I guess when you and those you love are sick, you have more than "Big money at the end of the road" motivating you to learn real medicine.
The Mayo Clinic, Lahey Clinic, Boston General, Boston University and a wide array of other schools, including Harvard Medical all subscribe to the IDSA protocol -- Lyme Disease is "not a chronic infectious condition." That's their statement.
You should be mad, I would be. The same thing happens to 95% of the people who post on Lymenet. Those who post here are at the very center of the Lyme Disease world, we know as much or more than the physicians who treat us. We could diagnose "our own" from across the world just by reading their words on a forum, or looking at them via Webcam (I do it all the time).
The simple fact is, we're the ones with everything to lose, so we know who is a "good" doctor, and who should be avoided. We also know when a physician claims to be in our circle but really isn't.
Unfortunately legal activity won't help. There ain't no way a judge will bypass IDSA guidelines unless strong strong strong obvious malpractice is involved. You need clear cut lines to prove a case like that, and patients like us don't have that usually.
Definitely avoid the steroids "unless" a real ILADS trailed LLMD is using them for "very acute" symptoms. An LLMD who advises that treatment will also use very high dose antibiotics and other supportive therapies to help the patient get off the steroids as soon as possible and to build their immune system back up later.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by sandyk:
I have my appt. with (are we allowed to say Dr's names here?).. the LLMD in West Caldwell, NJ who I am taking a second mortgage on my house for but she is supposed to be one of THE BEST. She is an IM, Rheumotologist and Pathologist. [/QB]
See? I knew it. It's Dr. F. Leave, leave, leave. I have better options for you who are far less expensive. I have patient reports up the *** about her. She was very good at one point. Suddenly in the last 2 years she's gone from excellent to what one patient refers to as "Nut job." The truth is, patients report one or two things about her. Either she's incredible, or she's horrible. There is no inbetween. Which tells me she suffers from the Dr. Jeckle/Mr. Hyde syndrome. A few other doctors on the list share the same behavior and patient review patterns.
This is why I keep track of these people. What one considers an LLMD one day can become another IDSA quack another. She isn't IDSA, but she most certainly isn't ILADS either. One example is a Dr. G/S in Texas. She was pressured into assuming the IDSA position and literally stopped treating Lyme Disease overnight. Won't even take a phone call about it. They say "We don't treat that here, click..." and they hang up on you.
I can understand why you went to see her though, she has so many positive ratings, but they're all from the past. A much better physician is Dr. B in Red Bank. He's President Of ILADS, shocking, right? Who better to see! However, he's a psychiatrist, so check with him to see how he'd handle your care. He would have a much better idea of what to do. He might treat you himself -- he knows far more than Psychiatry in regards to tick born infection, but he also knows when to refer a case, as patients have reported that he'll occasionally do that if the person has a specific issue that is too extensive (Such as severe G.I. symptoms, or heart abnormalities) I'll send you the entire state of NJ, and NY. Those are where you want to go for your care. Read the files on the doctors. When in doubt, choose someone else, that's how I feel.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by sandyk: I am going to a new LLMD on 5/6 I believe will get to the bottom of it.
I just don't want Mayo off the hook. I will keep calling until they get someone else to look at all of the tests, bloodwork, etc. after spending a week there (NJ to FL!)... and I want them to say it is not Lyme. When I do get my Lyme diagnosis, I will keep calling them until they acknowledge their failure to diagnose. May be pointless but I AM SOOO ANGRY.
You're wasting your time. Mayo doesn't have a Lyme Disease specialist. They have an IDSA Lyme Disease Specialist, but you can't really call a specialist a specialist if another physician knows a lot more -- a ton more actually -- who sees nothing but Lyme Disease (and tick born infection) patients, and bases his/her entire practice on the subject.
What you're be getting from Mayo isn't a Lyme Disease Specialist but rather an Infectious Disease specialist to review your records. You're wasting time, wasting, wasting, wasting, wasting, wasting, wasting -- shall I continue? Wasting......time.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Tonyg, is it ok if I take your post and use it as a patient report from Dr. F? Also, Sandy, is it ok if I use yours as well?
They remain anonymous. Your reports help patients make more informed decisions.
I am not biased in my reporting, but most certainly I know who to recommend (IF, and only IF, someone asks me to recommend someone), or in a case like this one with Sandy where she'd had poor experience with someone already on the list.
Let me know. It's very helpful.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by tonysgirl: Not trying to start controversy here, but I see the LLMD in West Caldwell and she is great. She has been treating well before many of the ILADS docs have and doesn't necessarily agree with everything they say. That is ok with me because I do not believe they are all of the same page so to speak and are not "gods."
Either way, she is an excellent doctor who is very thorough and is not scared to treat aggressively. It's a plus that she is a Rheumatologist as well because she is knowlegable about Fibro and Chronic Fatigue. She is not a big fan of Igenex, but uses MDL and Stonybrook, which are both good labs.
I need to make one important comment here -- perhaps even criticism. Stonybrook is the best of the commercial labs that are considered "credible" -- however, they absolutely sucks in the context of Igenex. Placing them side by side and it's like Michael Jordan slam dunking a basketball vs. a 1 legged 3 year old child attempting the same dunk.
MDL also misses tons and tons of Lyme Disease postive patients -- aka they have a lot of false negatives. They're a great lab for some very specific things that Lyme Disease patients deal with, but Lyme is not their best test, that's for sure.
We recommend MDL and Stonybrook only to patients whose doctors refuse to try anything else and who are only using those labs for Lyme Disease testing when they can't afford paying out of pocket. Insurance companies will pay for the testing at Stonybrook and MDL.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Lyme Bytes, I read your story. Thanks for sharing. I had the same experience with the steroid injection. I got it for my back and the pain spread to my ribs. I was on Remicade, Prednisone, Imuran, and Humira for years for crohn's and my so called Lupus diagnosis. My mainstream doctor even said immunosuppressive meds are a big no no when you have Lyme. He explained steroids as a bomb being dropped on your body,,,,it disseminates the bacteria.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
M-Blue... I just sent you an email with an outline of our history and copies of the bloodwork. Yes, it is Dr. F W.Caldwell we are going to see! Please send me your info so I can review it. My most important decision right now will be which doctor to choose in order to get the help we so desperately need. We have been to over 20 of them. This is no exaggeration. Our next move will be a matter of life and death at this point...!
[ 04-16-2010, 08:35 AM: Message edited by: sandyk ]
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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posted
Without getting into symantics here, why ask for my opinion for your list, if it is not taken seriously??
I had no problems with Stonybrook or MDL for that matter. Igenex is a great lab, but I believe StonyBrook is just as good and without the controversial label. Too much conflict of interest with Igenex and Dr. Harris. He may be knowledgable, but making bucks too. Also, StonyBrook is accepted by many insurances and is considered a credible lab by most of the ignorant IDSA clan, so it is a win/win for me. But again, just my lowly opinion......
Posts: 157 | From connecticut | Registered: Feb 2007
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posted
I am just so confused about the opinions on the different labs.
We had 3 Lyme tests. IGeneX - Positive Lab Corp - Positive MDL - Negative
The 3rd LLMD (Dr. G Basking RIdge) assured us that IGenex was crap, said the 2nd Dr. who read the positive Lab Corp result read it wrong and it is actually negative and her lab MDL was the only one we could trust and we certainly did not have Lyme, never did, she was certain of it. Why shouldn't we believe her? She was a past President of the ILADS for god sake! When you have 70 of the 75 symptoms of lyme for 3 years isn't it then a clinical diagnosis regardless of what all the bloodwork says?
After the 3 months of IV doxy he started to feel much better, doesn't that tell you something? We certainly told her that the pain had been going away! Then immediately after 3 months came the 3 pancreatitis attacks and 3 seperate weeks in the hospital within 2 months, adrenal failure, dehydration, anemia, etc. had to throw a wrench in the whole thing!!
If we weren't so misled all those months telling everyone "omg, can you believe we never had Lyme"...!! I certainly would have googled Mayo Clinic and Lyme, we would have never ever gone there!
I am convinced it is Lyme, so is my husband.... maybe we are wrong.. but I need to go to the best doctor out there to help us figure this out. I don't care if I have to walk from NJ to Pittsburgh!
[ 04-16-2010, 08:35 AM: Message edited by: sandyk ]
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- tonysgirl said: " . . . conflict of interest with Igenex and Dr. Harris " ?
Everything about Igenex is top-notch. Their certification, their books, their procedures - all in perfect order. There is no conflict of interest.
Yes, the owner of Igenex is a relative of a LLMD - both are doctors at the top of their fields - separate fields. In fact, each is better for the work the other is doing.
Often, you will find doctors who have relatives who are also doctors. When at the top of their field, referrals are clearly in order. No one is forced to go there, but clearly, and consistently, Igenex does the BEST work. They have the best procedures.
Still, ultimately, no test can tell us everything. An excellent LLMD is key. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
This is the story of many of us here. Maybe not neccessarily Mayo; but still the same story...... Going from doctor to doctor to doctor for years and having our lyme symptoms ignored; being misled. All the while getting more and more ill.
All you can do now is find a "real" LLMD. One that will diagnose you according to your symptoms and is willing to treat you until you are well.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Well I tried 3 times to do my own research in choosing doctors and obviously I failed at that on my own. If anyone can share the name of a "real" LLMD doctor that you found after going from doctor to doctor that was actually able to help you and not think you were crazy.. I would appreciate if you would share their name! Thank you guys... my heart goes out to all of you. I am also looking forward to getting the "report" metallic blue has compiled! This support and information on this site is WONDERFUL.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- sandy,
you have not failed, the U.S. system of medical care has failed. Most of use here failed far more than a few times to find the right doctor. Most had to go to at least a dozen doctors - over many years' time. And some patients still can find or afford a doctor.
And many here have also been fooled by doctors who say they treat lyme, only to be devastated to find out later they really don't at all.
I've been there many times. We all have. And each time I hear of this still happening I am still outraged. But, moving on is the only way out. I'm glad you found LymeNet as a place to share information that can help you and your husband.
Just to be sure Metallic Blue sees your note, I will send him a PM to reply to your request of the (ugh, word loss) . . . that sheet that has comments about doctors.
I'm also glad to see you posted in "Seeking a Doctor" - you may get a few other names but always ask the local support group members of their experiences, too.
When you can, I do hope you can read "Cure Unknown" and get the DVD for "Under Our Skin." Links are above.
You and your husband need to come to your own decision. Take the input from this board with whatever you can take out of it and realize that people have their own opinions and their own experiences with doctors, labs and so on.
I do not have anything against Igenex, just my LLMD doesn't use them and that is fine with me. Others feel differently and again, that is fine. You will find that allot on this board. You need to search the subjects you are looking for and take away what you can use/need. Also, seek other opinions and go back in time regarding your searches before some of the regulars on this board began to post and see what some others have to say.
People do become well, you just need a good LLMD and the correct treatment. That's it in a nutshell.
Posts: 157 | From connecticut | Registered: Feb 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I personally think its less about what lab is used and more about the right LLMD. LD is a clinical diagnosis.....period! The test are used to back up that diagnosis. But a good LLMD will first and foremost make a clinical diagnosis of LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by sandyk: M-Blue... I just sent you an email with an outline of our history and copies of the bloodwork. Yes, it is Dr. F we are going to see! Please send me your info so I can review it. My most important decision right now will be which doctor to choose in order to get the help we so desperately need. We have been to over 20 of them. This is no exaggeration. Our next move will be a matter of life and death at this point...!
Understood. Edit your post and remove the full name of Dr. "F". The forum rules allow us to pot the state and initial of the last name. We're not even supposed to mention the town or city, but I often do -- meh....some times rules bend, but you get the point.
It's too bad that you didn't stay with Dr. S initially. He knew what he was doing. I understand why you didn't stay though. Second opinions are very important to Lyme Patients. Many patients also see many LLMD's because it's true that each doctor has a different point of view, and some have weaknesses that deviate from what is in-fact actually necessary to get the patient well. Not treating co-infections for example. Some really good doctors who treat Lyme Disease long term, but don't treat Co-infections. That's a huge weakness. I only recommend patients see these doctors if I think the treatment will inadvertently hit the co-infection, such as a patient with Lyme Disease and Erhliciosis. A cycline therapy long term would hit both. Also, if the patient can't afford anything else and that physician takes their insurance.
You can see the spectrum is wide and people can only afford so much.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by tonysgirl: Without getting into symantics here, why ask for my opinion for your list, if it is not taken seriously??
I had no problems with Stonybrook or MDL for that matter. Igenex is a great lab, but I believe StonyBrook is just as good and without the controversial label. Too much conflict of interest with Igenex and Dr. Harris. He may be knowledgable, but making bucks too. Also, StonyBrook is accepted by many insurances and is considered a credible lab by most of the ignorant IDSA clan, so it is a win/win for me. But again, just my lowly opinion......
Your opinion is no less valuable for other patients to read. Just because I disagree or have a different opinion doesn't mean anything. I don't insert my opinion into the Lyme list, it's not my place, it's not fair to patients, and it's not right.
What is right is to collect peoples opinions and experiences (with their permission) and to put those onto the list so that when other patients read the list, they can say "Well, TonyG saw Dr. F, she feels she's great, and continues to see her and etc."
Here is how your opinion would be posted:
quote: I see the LLMD in West Caldwell and she is great. She has been treating well before many of the ILADS docs have and doesn't necessarily agree with everything they say. That is ok with me because I do not believe they are all of the same page so to speak and are not "gods."
Either way, she is an excellent doctor who is very thorough and is not scared to treat aggressively. It's a plus that she is a Rheumatologist as well because she is knowlegable about Fibro and Chronic Fatigue. She is not a big fan of Igenex, but uses MDL and Stonybrook, which are both good labs.
If you'd like to change it or have additions, let me know. If you don't want it posted at all, that's fine too.
Do I have your permission?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Also, I've seen three LLMD's Sandy, and I'm still not well, and each of those doctors was great at what they did. The problem was, they weren't great or perfect for me.
Your husbands case sounds pretty severe in terms of an untreated inflammatory condition. This really complicates appropriate treatment. I don't think the IV Doxy was the way to go -- but I do understand why he went that way. It would have taken longer, but I really think he should have gone the oral route, given how serious the symptoms were progressing.
But, that's hindsight, you know? I'm not a big fan of starting someone on IV immediately (if I was a doctor) unless I saw how they responded to oral therapies first. I also wouldn't start them on hardcore oral therapies initially. Do you know why? Because for all I know, that could send them into a massive herxheimer reaction that ends with them in the ER.
I'm not a physician, but I know enough to know that. A lot of patients scream for the IV, and I sure don't blame them, but like a lot of things -- people think they can grit their teeth and get thru things when it comes to Lyme Treatment. That isn't true. It's much much much stronger than people think.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by tonysgirl: Sandy,
You and your husband need to come to your own decision. Take the input from this board with whatever you can take out of it and realize that people have their own opinions and their own experiences with doctors, labs and so on.
I do not have anything against Igenex, just my LLMD doesn't use them and that is fine with me. Others feel differently and again, that is fine. You will find that allot on this board. You need to search the subjects you are looking for and take away what you can use/need. Also, seek other opinions and go back in time regarding your searches before some of the regulars on this board began to post and see what some others have to say.
People do become well, you just need a good LLMD and the correct treatment. That's it in a nutshell.
You are 100% right, in my opinion.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:Originally posted by sutherngrl: I personally think its less about what lab is used and more about the right LLMD. LD is a clinical diagnosis.....period! The test are used to back up that diagnosis. But a good LLMD will first and foremost make a clinical diagnosis of LD.
Bingo!
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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quote:Originally posted by METALLlC BLUE: Also, I've seen three LLMD's Sandy, and I'm still not well, and each of those doctors was great at what they did. The problem was, they weren't great or perfect for me.
so very true!
mtree
ps....the only thing I know about Dr.F in WC is that she gave up on my friend that has lyme and co-infections.... seriously...gave up on her....
one great LLMD might be good for one person but might not be for another....
you have to have a doc that sticks with you...keeps trying......and is the right fit for you...
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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