I have an appointment at Cleveland Clinic the end of this month. I live in WV and Cleveland, Ohio is about 4 1/2 hours from me. Has anyone with lyme disease or know someone with lyme that has been been there and had any success? I am seeing Yao,Qingping , M.D., Ph.D. Please help! Thanks! Posted by t9im (Member # 25489) on :
I don't know anything about the MD but my sister lives in Cleveland.
She used to teach with a friend who had lyme. The friend had to travel to PA and the CC is only 20 minute drive from the school.
Friend no longer teaches.
Posted by KentuckyWoman (Member # 38894) on :
I too am waiting to hear if I have an appt at C.C. Still not sure what good it will do. Mander? why are you going? Is a neurologist sending you there?
Posted by hopingandpraying (Member # 9256) on :
mander36 and KentuckyWoman - please use the search mode in the upper middle section of this page, then look up "Cleveland Clinic & Lyme" in the Medical Questions section posted by Ocean on 2-6-09.
Looks like Cleveland Clinic, along with Johns Hopkins and Mayo Clinic don't believe in Lyme and should be avoided at all costs!! You need to see a Lyme-literate doctor.
Posted by soccermama (Member # 35101) on :
Mander36 and KentuckyWoman: I went to Cleveland Clinic in February 2012 after I had seen my current LLMD. I wanted to make sure that I did not have a more "serious" condition.
I saw four doctors there in the course of four days. I had quite a work up. They could not find anything. The neurologist wanted me to come back for more tests but I didn't go. They were simply looking for a needle in a haystack.
The internal medicine doctor who managed my care was very clear that the Cleveland Clinic did not believe in chronic lyme. She said, "I am sure you are aware of the controversy surrounding lyme." She was very professional though.
The gastroenterologist, on the other hand, was very rude. He basically said my LLMD was a snake oil salesman who was exploiting me. He also refused to do any tests until I agreed to go off my antibiotics.
So the trip was not a total loss. I found out that nothing was wrong with me which confirmed my chronic lyme diagnosis.
Posted by droid1226 (Member # 34930) on :
I posted this in Medical too. I just wanted to let you know my experience. It was not good. They were less than helpful and extremely unprofessional. I never, never want or will go back there for anything.
I stayed in the Cleveland Clinic for 2 weeks in the summer of 2011. I have them to thank for finding my positive lyme titer... after that they found ehrlichiosis, toxoplasma, hhv6, and EBV(plus more). I also tested CDC pos on 2 western blots and an ELISA.
They only tested for those because of a previous unaffiliated lyme friendly dr I had seen urged them to. Before that, they never even heard of any of the diseases.
However after a 10 days of testing every organ, mri's, and countless abnormal blood tests. I saw every ID Dr. and Neurologist on the main campus hospital, at least 30 different Drs passed through my room at one time or another.
Not one would agree that I needed any antibiotics or that my seizures/arrhythmias/ and countless other symptoms had anything to do with lyme. They ran over 60,000.00 worth of tests after finding the lyme and other infections and charged it all to my insurance.
They discharged me with a handful of diagnosis' from POTs, anemia, walking pneumonia, neurological syphilis(even though I never tested positive). They concluded that possible syphilis was the reason for my positive lyme WB. I don't have syphilis. They gave me a 5 day Z pack after some convincing on my end.
I also have seen multiple rheumatologists, GI dr's, urologists..and many more from the Cl Clinic. They truly are the epitome of lyme ignorance.
Posted by Lymetoo (Member # 743) on :
Fogettaboutit!!
Posted by seekhelp (Member # 15067) on :
All university hospitals are USELESS USELESS USELESS for Chronic Lyme/co-infections. Total waste of time.
Posted by Keebler (Member # 12673) on :
- Cleveland Clinic's "lyme page" has several glaring errors of "facts" as well as many errors of omission.
You've heard from just a few who were not at all well served at CC. I've read from many others similar experiences. Same for Johns Hopkins and Mayo - and nearly every university hospital or any clinic that is "run" by the IDSA.
(IDSA is explained in the links below "WHY ILADS")
See listener comments, too. They show us how very wrong the ID doctor is who was interviewed. Very typical, though, and why it's best to avoid (Infectious Disease) ID doctors & Rheumatologists. -
Posted by KentuckyWoman (Member # 38894) on :
I tried digging up that post, but couldn't find it. Ocean's stuff only goes back to Nov, 2009. I had already read info on the Mayo website and was not impressed. I also recognized the lack of enthusiam for treating lyme.
My current "issue" is that I need overwhelming PROOF for hubby to hold my hand in this.. aka.. validation.
I'm concerned C.C. will send me hopping thru more neurologists that can't find squat and want to put me thru psycho testing and meds. I've been thru TWO rounds of that already.. NOT the meds.. I refuse meds til I know what I'm dealing with. Their answer to clear EEGs is that it must be "PNES" "psychogenic non-epileptic seizures"..
Well I DID their dr-hopping last year.. even went thru the psycho testing and saw a psychiatrist. My testing was all "above average" exept for the math skills. I tested avg on that. Last year my brain was so bad that I could not even process numbers in ANY form. I just happened to be having a decent day on test day.
The psychiatrist said that "PNES" is just a THEORY. It's something that neurologists come up with bc they can't explain why a person is having seizures if it's not on the EEG. He said that neurologists are so arrogant that they just can't bring themselves to say, "I don't know"
this year, round 2.. Neurologist, Epilepsy Monitoring Unit (EMU) and now Neurologist is "poo-pooing" the psychiatrist that THEY sent me to last year and wanted to do more psycho evaluation. I'm really tired of all this nonsense.
In my mind, a med-free "positive" one band on WB and low CD-57 is proof enough for me.. I DO have appt with LLMD.. Praying he knows his stuff.
Also,praying Hubby will catch on in order to relieve the stress of lack of haromony in the home over this issue.
Even the DRs don't agree with each other on all this. We're stuck in the middle and I only keep my sanity bc of all the friends in the Lyme support community.
Thank you Lymetoo and Keebler.. as always.. for keeping us all straight and encouraged.
Posted by Keebler (Member # 12673) on :
- I'm sorry to say this but if you think ANY doctor will be the magic key to your husband being able to understand this, I would not hold my breath.
You do not need your husband to understand. Really. He likely won't - or at least won't for a while. You have to move ahead and do what you need to do for yourself.
And, to be blunt, you have to become your own hand-holder here. This is a very hard matter for most family members to grasp. You don't have time to wait for them, especially if they are not wanting to learn more. It can't be forced.
You are "praying that he knows this stuff" -- Who? The CC doctor? He will not. I guarantee that.
You need an ILADS-educated Lyme Literate doctor.
CC doctors are IDSA-connected, not at all educated as those with ILADS.
It's vital to become educated in the "controversy" about this and seek out the doctors who ARE informed. They are not at the CC. -
Posted by Lymetoo (Member # 743) on :
If you go to one of those clinics I can almost GUARANTEE you that they will not find Lyme or any other tick borne illness.
Get a dr who will run a Western Blot thru Igenex lab.
- As for seizures, many don't show on EEGs. A QEEG is best but, really, seizures are often part of lyme and, IMO, the toxicity caused seizures as with lyme may not show on EEG if the total toxic load is what sends the seizure over the edge.
I've had a great deal of experiences with seizures and "experts" who "could find nothing" -- just stop wasting time with (about lyme) ignorant doctors and seek out those who have gone beyond to study the complexities of lyme and associated infections & conditions.
It's not your job to educate or convince anyone. You should be able to go to a doctor who is already up to speed and way ahead of the curve. You won't find that at CC - not about any tick-borne or chronic stealth infection. -
Posted by KentuckyWoman (Member # 38894) on :
Thanks Keebler.. as always.. great advice.. I will take it to heart..
I was praying my "new" LLMD knows his stuff. I've read some horror stories on here that makes me nervous a bit, but I still believe it's better than anything else I've done so far.
And. . . You are RIGHT. I shouldn't be trying to "educate" everyone.
It's the superhero inside me that tries to right the injustices in the world that does that. I'll keep her in better control. :-)
I have found that people just don't "get it" and it wears me out to teach them. It's a lonely illness for sure, except for you wonderful people.
Posted by Keebler (Member # 12673) on :
- KentuckyWoman,
you say that you are "praying my "new" LLMD knows his stuff." (end quote)
If you've not yet been to that doctor, be sure to do your homework, first, to be absolutely certain that he has the knowledge, experience and courage required.
Ask at ALL the support groups within about a hundred mile radius to their office.
Be sure they are ILADS "educated" and find out if they are attending this weekend's ILADS conference in Boston -- or plan to see the delayed (due to weather) video-feed the first weekend of December (AND get the DVD set).
You can't just hope they will be okay, it's vital to know beforehand that they have at least seen many other with complex cases to a solid remission.
True, each person is unique but, still, be sure to do the homework first so your guess is as educated at possible. -
Posted by poppy (Member # 5355) on :
Another Cleveland Clinic story:
Man from foreign country goes there with photos of pathologist identified spirochetes from biopsy material, at great financial sacrifice. They use up all this money, since he has no insurance that will pay, and find nothing. Man refuses to leave without a diagnosis. They call the police.
If this isn't the kind of medical experience you want, go elsewhere. They won't find it or treat it if you have tickborne diseases like lyme.
Posted by hopingandpraying (Member # 9256) on :
KentuckyWoman - here is the link to the post I mentioned earlier which was written by Ocean on 2-6-09 (sorry, I'm not very computer literate!):
In order to have your hubby see the real picture about this horrible disease, have him read "Cure Unknown" by Pamela Weintraub and view the DVD "Under Our Skin" on http://www.hulu.com/watch/268761/under-our-skin
I don't know if it's still free to view it on Hulu, but, if not, you can also try finding it at your local library or purchasing it online.
Posted by Cx=waspsting (Member # 37685) on :
Re: CC - I have now been twice in 30 days and going again this week.... So far an absolute disaster and disappointment .... Waited since May to have first appts late Sept... They scheduled wrong docs and the ID guy was soooo weird and rude and completely and utterly dismissive of any possibility of Lyme infection. ( CDC positive Apr 2012) .... I have ALOT of secondary complications and the endo, immuno just sat there with legs crossed and behaved terribly towards me.... Smug and again unengaged and dismissive. I would not recommend them - I am just chasing some peripheral neuropathy testing which only they offer in my region.... I will take this info and go elsewhere....p
Posted by Lymetoo (Member # 743) on :
Very sorry you were stung, Cx=waspsting!! What an awful experience.
Posted by KentuckyWoman (Member # 38894) on :
Thanks Hoping, for the link.. YES, this is just the way my honey thinks. If big name Neurologist says I'm psychogenic then it MUST be true. After all, he's an expert. (raspberries)
I have the book "Cure Unknown" sitting right here. I borrowed it from the library. He won't read it.
The wild inconsistency here is that he doesn't believe any of this bc it's not from the Mainstream or Mainline of Medical thinking. He thinks it's all "conspiratorial"
and YET.. we are dedicated chiropractic patients !!
I shared all this stuff w my chiropractor. Guess what? He GETS it !!! even the whole business of cleansing the body of toxins etc. I gave him some info to chew on.
He also told me that he thinks it was somewhere in the Northeast (after I mentioned Lyme, CT) where he read about some biochemical engineering for warfare near a military base. And how a bunch a locals were getting very sick bc of a leak.
He was not at all surprised by the two camps of thinking concerning Lyme.
My honey is very good to me, don't get me wrong. He takes good care of me. He has been solid for almost 2yrs now with this.
But, it was just last month at Neurologists appt that we have divided our battleplan. He still takes care of me, but he thinks he's taking care of a mentally ill person rather than a bacteria-ravaged body.
THIS is where my real stress begins. Before that, I would label myself as one of the least stressed people on the planet.. really..
I am waiting for my AdvLab test, then LLMD appt on 15th.
Posted by KentuckyWoman (Member # 38894) on :
About Cleveland and Mayo.. It seems to me that if all these patients are coming in for these boatload of symptoms, that SOMEBODY would scream, "enough of this!" and just use their power and egos to right an injustice here. UGH!
Do they REALLY believe they know better than the overwhelming statistics?
We seem to be like playing cards to them. Shuffle and sort them into diffrnt baskets.. one for psych ward, one for Fibromialgia, hey!! let's give this one Lou Gherig's dx. "Bwahahahaha"
Posted by Lymetoo (Member # 743) on :
I know. It's crazy! Most chiros DO GET IT. They think outside the box.
Google Plum Island and/or read Lab 257.. it's about the conspiracy and the engineered bacteria.
ok, i can hear Gilbert Godfrey's annoying voice in my head now..."WHY AM I NOT SURPRISED? !!"
Posted by PatriotM (Member # 38493) on :
Mander,
Unless there is some question that you might have something other than lyme, I can save you a LOT of wasted time and money by telling you exactly how your CC experience will go.
Here's how it will unfold. They will start by ordering TENS OF THOUSANDS OF DOLLARS OF TESTS, many of which you've already had. These doctors are so arrogant that they won't accept anyone else's testng. Then, when most of these tests come back normal, they'll order still more tests, repeating some of the tests even they themselves did. They will have you coming back to the CC for months and months for repeat visits and theorize that you may have Multiple Sclerosis, Lupus, Neuropathy, and maybe even ALS (never concerned that they are scaring the crap out of you). After MANY months of not being able to make a firm diagnosis, they will finally say that your symptoms may be stress related and that it might be a good idea to see a psychiatrist. After all, if they can't figure out what is wrong with you medically, YOU must be CRAZY!!!
In my case, after MONTHS of wasted trips to the OSU neurology clinic, multiple MRI's with "several hyperintense white matter brain lesions"; multiple abnormal EMGs and nerve conduction studies; and multiple positive WB lyme tests - THEY COULDN'T DETERMINE WHAT WAS WRONG WITH ME! In retrospect, maybe those positive lyme tests might have been a hint!!!
My problem was that 10 years ago, I didn't know that LLMDs even existed. Fortunately, you do.
So, once you're satisfied that the CC docs have ruled out other stuff, then at least you will have the luxury of going to a LLMD and getting proper treatment.
Posted by map1131 (Member # 2022) on :
kentucky, it would be so helpful to get your hubby to our support meeting with 20+ people and spouses.
You are not crazy. He really needs to speak with other spouses who didn't understand it early on.
Pam
Posted by KentuckyWoman (Member # 38894) on :
Map, Thanks, I'm really working on it.
Patriot, I know you are right. The path to CC was already forged before I started my Lyme investigation path. I'm ready to jump ship on it, but hubby is not.
I've already been thru nearly 2 yrs of what you described above. I AM tired of it. ALL the stuff I've learned since Labor Day FITS PERFECTLY in every puzzle piece about this illness. All the other theories have too many holes in my case.
I try very hard to stifle my anger over the injustice of the politics involved surrounding this disease. ARRRGH! ... * ... ahhhh.
What is sad it that my PCP is on board with this as much as possible given her circumstances. My Chiropractore 'gets it' All my family--including hubby's side.. "gets it"
I have a guy at church that's been asking me since I first got sick, "are you sure you don't have Lyme?" He knows a chronic lyme patient and saw it before anybody else did.
Thanks again for all the support..
I'm grateful for this forum.. I am sorry for those that have suffered so long before me and did not have this blessing to turn to. It's a very lonely and horrible thing to suffer especially without support.
Posted by KentuckyWoman (Member # 38894) on :
I know this thread was mainly Mander's, I hope he/she is seeing the info here. Mander, are you there??
Posted by Lymetoo (Member # 743) on :
I sure hope you can get out of going there.
Posted by phil 12345 (Member # 39405) on :
Kentucky Woman
Phil 12345 from southern ohio- do you have a LLMD that will take a lymes patient that need immediate attention
Posted by KentuckyWoman (Member # 38894) on :
I don't know what you mean here phil. The Dr I will see next week is not LLMD (yet) they are in training I understand. I'm going anyway to see what happens.
BTW, I got a call from my PCP. She says AdvLabs is moving my culture to the 8wk process. I don't know how to feel about that. PCP says it's not positive and it's not neg ...yet.
Posted by Lymetoo (Member # 743) on :
He's asking if you have access to an LLMD that you can see right away.
You need an expert, not someone in training. If the Advanced Lab test comes back negative, be sure to get a Western Blot thru Igenex Lab.
You CAN get a false negative thru Adv lab. If it's positive it's a sure thing.
Posted by Lymetoo (Member # 743) on :
ooops... I see now that Phil was asking for help. I'll send info.
Posted by KentuckyWoman (Member # 38894) on :
Thanks Lymetoo. My AdvLab is "inconclusive." My PCP called me last night when the fax came in. (She's pretty great.) She said, "well, it means it's not positive and it's not negative."
They've moved into the 8wk incubation. This whole thing is like trying to fish for a tadpole in the ocean with an eyedropper.
I am sure my hubby will not pay for IGenX. We just don't have the money. That AdvLab test cost $600 big and PRECIOUS ones !
Posted by Lymetoo (Member # 743) on :
I wish someone had told you to do the Igenex instead. At least it's not an all or nothing test.
It IS like fishing for ping pong balls in a swimming pool with the Advanced Labs test. If the net comes up empty, it doesn't mean there weren't any ping pong balls in the pool!!
Posted by KentuckyWoman (Member # 38894) on :
Thanks Lymetoo, The tech person I have been consulting with at AdvLabs is super nice. He said that I should not be discouraged by the 10day inconclusive result.
I asked for a ballpark idea (and those stats are in the sheet they provide) of how many cultures prove positive after 8wks in the culture. He guessed roughly about 50%.
I had mixed reviews on AdvLab vs IGeneX. I went with AdvL bc it is a more recently advanced test and the development of it was overseen by Dr. B.
I was also advised that a picture of the buggers is undeniable of course.
It is what it is now. Gotta take it.
I'm always wanting everything to be "ideal" and it just won't happen that way with this bugger.
I'm learning a very hard lesson in patience and I'm fighting it tooth and nail. 8 wks is a LOOOOOONG time. But I will get thru it, of course.
Even if the test is not showing anything. I will know by then anyway whether antibiotics trigger them. Then I can go back to the ol' WB game of cat and mouse.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by KentuckyWoman:
Even if the test is not showing anything. I will know by then anyway whether antibiotics trigger them. Then I can go back to the ol' WB game of cat and mouse.
- Oh yes. If you're going to treat regardless, then you will know when you herx.
Have you read Dr C's Western Blot Explanation?
Posted by KentuckyWoman (Member # 38894) on :
No, Lymetoo I haven't, but would love to. Is it on here somewhere?
Posted by KentuckyWoman (Member # 38894) on :
Found it, and yes, I did read that before, just didn't remember the source. I think that is where I first understood that one + band really does mean something. Thanks
Posted by Lymetoo (Member # 743) on :
good!
Posted by Ann-OH (Member # 2020) on :
Sorry you had such a bad experience with the Cleveland Clinic. It is pretty typical of them. I will send you a private message about good doctors in Ohio.
Ann - OH
Posted by ktkdommer (Member # 29020) on :
Cleveland clinic did not do any testing on my son. Rheumatologist said he had fibromyalgia. I asked why a 14 year old would have that. CC's big advice for him was to get good sleep, he couldn't, see a therapist, that was a waste as he was sick not lazy, and to do PT. That was torturous at times. Just getting him there was terrible. None of it worked because it was Lyme. They pushed hard to get him in their super expensive pain clinic.
I went to U of M who told me I had Lupus. A local infectious disease doc looked at my CDC positive western blot and said they were all false positives.
I have written the CC with an update on my son and how well he is doing. I got a response but then can never get in touch with the lady I am supposed to talk to.
I hope that you can be seen by a good LLMD, and maybe one that is ILADS trained.
Posted by KentuckyWoman (Member # 38894) on :
An update: The "new" Dr I saw in Nov is a D.O. He was referred to me by the local Lyme support group.
He attended the ILADS conference along with his colleague. He's already had alot of experience with Lyme patients whom he saw when he was living in the Northeast. And, he's worked with Dr Burrascano also.
They are making plans to start taking on the Lyme battle in 2013! I just happened to squeeze my toe in the door early, thanks to my Lyme Angel, Map.
My AdvLabs test at the time was not conclusive and I am still waiting for results (in Jan)
When I saw "Dr. D.O" and he ordered the IGeneX test anyway. He offered great explanation as to the "why's" for this test. Hubby disgruntedly agreed.
I am waiting for my results of that test. And my next appt with "Dr. D.O." on Dec 20.
It's a wicked feeling to feel, "All I want for xmas is a Lyme dx."
I just want a face to the beast I'm battling, that's all.
And, yes, a little validation would be nice in the stocking as well.
My disharmony with hubby is very stressful.. on so many levels.
Hugs to all my support group here.. I'm so grateful.
KW
Posted by KentuckyWoman (Member # 38894) on :
OH, and C.C. just called this week. (after a month of silence) HaHa.
The lady explained she'd been on vacation for 3 weeks!! (must be nice)
Informed me that the Neurologist had not sent them the necessary paperwork for the EEG I had done in AUGUST.. Yes, I did type AUGUST.. That's how crazy this stuff drags out. "Shocker!" I said.
I answered her questions.. she wanted ME to contact the Dr offc to get that rolling.
I politely said that I was not feeling well and I would give her all the numbers she needed to do that (her job) She already HAD those numbers last month. Sunspots must still be in her eyes.
I also mentioned that this was becoming a problem since it's dragged on til the end of the year now and my insurance deductable will start all over again in Jan which I cannot afford. (she was not moved)
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