posted
I sent a letter to the editor of our local paper (see my post in ACTIVISM), and it was published this morning.
I just got my first call. Local resident called to tell me what happened to his 27 year-old daughter. Since September she has suffered from severe neurological symptoms: slurred speech, trouble walking, now almost bedridden. They went from doc to doc to doc. Her complaints were DISMISSED by all, including YALE (surprise), as psychiatric in origin. Yale confined her in their psych unit for 5 days and then dismissed her.
Of course all standard Lyme tests were negative UNTIL, LO AND BEHOLD, a spinal tap was positive for Lyme. A local neurologist (not known to be Lyme-literate, I saw him 20 years ago) has put her on IV abx for Lyme.
Yale is now saying, "Impossible!!!! She can't have a positive spinal tap and negative blood test!!!" Yale is sticking to their guns saying she cannot possibly have Lyme.
This is INSANITY.
update: I forgot to mention that she is going to have a brain biopsy as neurologist fears progressive encephalitis has set in.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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poppy
Frequent Contributor (1K+ posts)
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posted
Brain biopsy??? I sure wouldn't want that. What good will that do? She needs treatment, not more tests.
Good for you for your letter!
Posts: 2888 | From USA | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
boy...sounds like they should be using feathers and smoke.
some people will never accept lyme and they're dangerous to boot
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Rheumotolgist was going to have that done to my husband many years ago. He refused to believe it was lyme. It is so maddening!
Posts: 22 | From Massachusetts | Registered: Jul 2007
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posted
Yale could also say, "Oh, they were bitten again." Sure, right.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Surgery can significantly increase the risk of another Lyme "attack". The ticks get "ticked off."
This is a sad but true example of how AWARENESS brings attention. Someone needs to send all the current, reputable scientific data about Lyme and TBD's to Yale, with an introductory letter. Departments: Internal Medicine, Infectious Disease, Department of Neurology, and Department of Pediatrics. (key starters)
This can be done without mentioning a name, though if given permission, it would be more credible and powerful!!!
We must seize these opportunities.
More people need to write letters to the Editor of their newspaper, their House Reps, their Senators, etc. A ripple effect, indeed!
Now is the time to act and react.
The girls in NY have tested + for Mycoplasma.
Thanks for sharing- just so sad.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
17hens: When you say the girls in NY, do you mean the ones with Tourette's-like symptoms?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Well, it won't hurt to send info to Yale, but I hate to say it; there is a snowball's chance in h*** of it doing any good. Yale is a bastion of Lyme denial, as we all know. If they won't believe a + CSF, they aren't going to believe anything! It's unreal.
Can't we place ticks on these guys office chairs instead? Wait until it happens to them or their loved ones. Not that I believe even that will change their tune. Awful beyond belief that so many have to suffer and die, so these guys can stick by their guns for their various reasons.
Posts: 3792 | From around | Registered: Mar 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Progressive encephalitis can be haulted with sufficient treatment, right?
I had/have this real bad from Bart (and possibly Lyme I suppose) and I fear the worst.
However Rifampin and/or Mycobutin both work WONDERS on it and literally eliminate all the symptoms from it.
Dr S talks about it in his book (Rifampin for severe Bart encephalitis)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We've all probably had encephalitis as it's very common with lyme that has not yet been treated.
Yes, treatment can halt it - the RIGHT treatment.
A brain biopsy is NOT the usual way to diagnose this. Taking a chunk of brain out is a very serious procedure and I am astonished they are even considering this.
My mother had this done and it was horrible in ways I never expected.
I hope she REFUSES THE BRAIN BIOPSY.
I fear she is being targeted for torture, quite literally. They do not like anyone to even whisper "lyme" at Yale. Those who do, get punished. Severely.
But, as they previously (mis)diagnosed her with a mental illness, she may loose her rights or in other ways be treated very badly. I sure hope she has strong relatives who can pull her out of there while keeping the IV in.
Or get new doctors assigned but it's likely there just is no one who can stand up the the IDSA bullies there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- This test requires being off all abx for 30 days but, still, it may help them to know about this: --------------
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Unbelievable story! I agree... write another letter to the editor about this poor girl's horrible ordeal and the Yale group not seeing the forest through the trees.
I hope she does not go through with the brain biopsy!
Posts: 2387 | From New England | Registered: Aug 2011
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posted
This madness makes me crazy.
Posts: 566 | From West Coast | Registered: May 2008
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
quote:Originally posted by Lymetoo:
quote:Originally posted by paulieinct: 17hens: When you say the girls in NY, do you mean the ones with Tourette's-like symptoms?
- Yes!
Bingo!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- paulieinct,
Please keep us posted about the young woman.
Is she in the hospital now?
I hope she can find a lyme advocate, an ILADS-educated LLMD (of course, they are not usually on staff at any YALE hospital or on any insurance plan, though) . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Think that is it: brain biopsy is the punishment for having a positive lyme CSF test.
posted
Thanks all for the info. I ended the conversation with the girl's father by asking him if he wanted to go public with his story. He said no, not just yet. I told him to please keep me posted, as I have a wealth of info. to guide him.
She is no longer inpatient at Yale. She may be at Hartford Hospital. It sounds like the local neurologist is calling the shots now.
At least she is on IV abx, just started a few days ago. The father told me they were expecting her to start feeling better soon. He did NOT know about herxing, I told him she will likely feel worse before she feels better. I guess the neurologist failed to tell him about herxes, or maybe he was clueless himself.
I am hopeful that the father will call me back with updates.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Unfortunately, this is an unending saga. It's been going on since the 70's... i don't know if "the public" will ever be given the real story, ever.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i screamed NOOOOOO! when i read biopsy
yale F'ed me up 30 yrs ago...you'ld think they'd get it by now
can you stop this biopsy??? i have seen it screw up so many ppl. after brain surgery , lyme may not be the biggest problem
however...when i had my spinal tap doen by and excellent ilads llmd he insisted i have blood drawn close to the time of the spinal tap and it is comparing both results that gets you a positive for lyme...i cant explain it better i dont really understand it---but this doc has probly published on it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi paulieinct:
Our daugher was at H and B Children Hospitals. The neurologist at B was great but the Lyme test came back negative so it was a dead end.
I won't even begin to go into H where they are terrible as they have the pre concevied mind set and forget about it. The infamous Dr's. Z and F. We saw F - I know Lyme and your daughter doesn't have Lyme Disease (we wasted 4 months with this "expert".
Anyway here is a story. 2 year old girl, sick for around a year. Diagnosed with rare genetic neurological disease given 1 year to live.
My wife met with the mother and I met with both bringing Dr. B's guidelines and sending my controvery e videos.
Baby started seeing Dr. J back in Nov time frame. Igenex showed positive bands.
Now into 4 months of antibiotic treatment. MRI shows lesions shrinking, she is able to walk again. Still a long way to go. Neurologist won't attribute the progress to the meds.
So the father may have a tough time with a H. neurologist.
I have a few more stories meeting parents who's children first were treated by HH MD's.
She is too old for Dr. J but maybe Dr. M.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Yes I agree that Yale is worthless. And that Dr. Z would have been a HOOT at Auschwitz in the "children's ward".
If the father calls me back, I will share what is the general consensus here about the brain biopsy.
I have learned alot about this disease in the last 3 1/2 years since my diagnosis. Since I am retired and have the rest of my life off, I have become an armchair diagnostician. I have told probably dozens of people I know or have met - also family, friends and neighbors - that they clearly have Lyme. I am very emphatic about it. I don't say "maybe" you might have Lyme, I say, "YOU HAVE LYME DISEASE."
Still, about 80% don't believe it, they just cannot believe that their PCP could be so stoopid as to miss it. This even after they have watched Under Our Skin. Even my brother doesn't get it, he has many of the same symptoms I have. I brought my sister to my Lyme doc and she tested IGENEX positive. I persuaded my cousin to go and she's also IGENEX positive.
I have another cousin who I know has Lyme in his brain -he was diagnosed and treated for Lyme years ago - he's borderline psychotic now. He will not go to any doctor and he's holed up in his house with guns. Recipe for disaster.
Trying to save lives here, but very frustrating.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
A doctor who is overseeing IV for lyme disease and does not know about herxing is dangerous. He may take this as an allergy and pull her off the meds. This is tricky to handle and uninformed docs often get it wrong.
And herxing can be dangerous in some cases. A doc has gotta know what to do at the right time.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
This is a terrifying story and its so bananas people have to suffer and go through things like this. I hope this girl can find guidance in the right hands.
After my recent stint at Yale for dehydration I can tell you first hand how BACKWARDS they are. I came in complaining of stomach problems (ok, sure when I showed up I was shaking uncontrollably and my throat felt like it was closing).
They admitted me, rehydrated me (my body is having a hard time holding onto nutrients/absorbing them from my gut...its been a fun few days) but in the mean time with a complaint of my gastro issues they had me doing chest x-rays and having a full neuro work up.
Thank goodness I passed the neuro with flying colors b/c they were all about an MRI and spinal tap. (Already had an mri, its normal). I was so confused as to why no one was helping me with my stomach issues. But remained calm and just kept listening to what the doctors had to say.
Thank goodness after 3 days of rehydration I regained some of my strength back and was out of there. But the head neuro guy was all about sending me to a psych...I said thats a great idea and I'll look into it and he left.
I am so thankful for sites like this to give me confidence to stick up to these banana heads out there. Yale is probably great at repairing things and fixing things up, but expect to be poked and prodded and looked at like you have a million heads if you mention you tested positive for lyme.
Posts: 183 | From ... | Registered: Oct 2011
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What about a SPECT scan, if they insist upon having to do something? I believe it's noninvasive and can show lack of bloodflow. Of course we all know she needs treatment, with a decent LLMD, not more testing.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Thanks everybody for all the feedback. I hope the father calls me back. -Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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