Today I went to my primary care physician at our county hospital.
He ordered several tests on my last visit, including Lyme, Babesia and Ehrlichia titers, thyroid levels, CBC, blood chemistry and a pelvic ultrasound.
My test results were all "normal." The lab they used for Lyme and the co-infections was "Specialty Laboratories" in California. The result was negative for all three infections.
Well I don't trust that lab's results, but the doctor says, "You don't have Lyme anymore" because of the results on that test.
After I talked about my health issues with him, he said, "You've mentioned 8 or 9 things wrong with you, and you're only 30 years old. I think you need to see a psychiatrist because this could be in your mind."
I felt so insulted because he was implying that my problems aren't real and he denied that I have Lyme or any physiological reason for my symptoms.
I can't help it that I have all of these health problems and I'm only 30! I just want a doctor who believes me and wants to help me.
electrolite
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Now, it could be that you don't have lyme (were you ever assessed prior to this?) However, I'd want to know more about the lab and
TESTS are NEVER the correct way to diagnose lyme.
If you have many things wrong with you, your doctor needs to be thumped on the nose for ignoring your symptoms. So - you have to just walk away. You have no other choice.
-------
Call your doctor's office. Arrange for a complete copy of your file to be mailed to you for you to pickup (or a friend with a note from you).
All you have to say is that it's for your personal file. Say no more. You will be tempted, but it is best that you say no more than that at least until you get your file.
You don not have to say the name of a new doctor (and you probably won't know it yet
Then never go back. But be aware that nothing can ever be erased from your medical chart.
--
Any doctor who said the things you quoted is not a good doctor.
If you continue to try to get treatment from him you will be a fool.
You are wiser than that so, as hard as it is, drop him and devise a far better process of hiring your next doctor.
Long gone is the time that any yahoo doctor will do. You need a real doctor.
Contact your local support group. Also, know that there are many other chronic stealth infections to consider and, hopefully, a good ILADS-educated LLMD would know how to best assess you.
Good luck.
-
[ 02-28-2009, 02:56 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Thank you for confirming with me that he was wrong. Sometimes I doubt myself and wonder if maybe all of these doctors that keep saying the same thing to me are right.
Basically what he was saying is that I am crazy.
You are right. I am planning on going to a Lyme literate specialist, as soon as I get all of the medical paperwork together.
I feel like seeing a LLMD will be such a huge change from the care I have received thus far! I am anxious for that to happen.
electrolite
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I just looked up the labs where your tests were done:
I can't say more as I don't have energy to look further. This could be a good lab - and I would not say more unless I found evidence otherwise as it would not be fair to this lab.
But - did you have WESTERN BLOTS done? Were the same bands tested as Igenex tests? ( www.igenex.com ) - Some labs do not test all the bands.
What day of the week was you blood drawn ? (If a Thursday or Friday, that is never a good sign.)
What does your test page say for the test methods (you did get a copy of all the tests, I hope?). Did they do an ELISA (if so, that is never a good test).
Still, we all know that tests are not the key point - even the best tests are not the best with tick-borne disease.
And - even if you many not have these, you should not have been dropped. MANY more things to consider.'
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive.
Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
And may I add to the list of things to test for: enteroviruses. Using Arup lab. The enterovirus website is not quite operational yet, but it will have loads of info on it soon.
A friend of mine is now 95% well after being sick for several years (very sick). She has been on antibiotics for lyme/coxiella, valcyte for high EBV and HHV-6.
She saw improvements from both treatments. She is now almost well by treating the enterovirus with oxymatrine. She had multiple pathogens making her ill.
Topic: Parvovirus B19 should be included in Lyme differential Dx!!!!
AliG - posted 12 October, 2008
-
[ 02-28-2009, 02:52 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
electrolite,
there are very long waiting lists for LLMDs. Don't wait until your paperwork is in order.
Find one. Call. then put your papers in order during the wait.
--
Oh, and while your doctor is crazy for thinking anyone with complex symptoms is crazy, don't underestimate the support that you might find with a good therapist.
You are going through a lot. Your local lyme support group may have some suggestions of LL counselors or therapists who could help you sort through your emotions around all this and help with some retraining of thoughts, language, action - if you need a shot in the arm for any of that.
All of the sudden, it's like we are in a marriage with a stranger. We need to learn how to accept ourselves - regardless of what has happened to our bodies. But only a LL professional will do.
And - a good LL therapist can help to treat the abuse suffered at the hands of the bad doctors. That should not be left to fester and your anger can be turned into a positive force helping you get better.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
EL said..
"Well I don't trust that lab's results, but the doctor says, "You don't have Lyme anymore" because of the results on that test."
Well, he is an idiot.
No nice way to say it. Plain old BIG time idiot!
That is NEVER an indication if you have Lyme or not.
NEVER, NEVER, NEVER.
He flunks Lyme 101.
In my opinion...
You are NOT crazy. HE IS!!!!
And you are stuck paying for a world class idiot. Ouch on that!!!
When you call his office and they ask if you made a phych appointment...
Sweetly tell them yes, you did. For the DOCTOR!!!
But before you do... immediately get a copy of all the lab results and records from his office.
When you see someone this idiotic ... chances are they could be lying too.
You need to SEE these records yourself, don't take their word on it.
Too many times I've not done that.. in the early years... only to see them for myself years later and they WERE positive. I was lied to... on top of the other insults and injuries.
And don't slap me around saying, "OH TC, you are being mean."
I've had this happen to me TOO many times to count and have seen it happen to MANY others.
And one more word of advise...
Make up a new song you can sing all day today while you are doing stuff.
The duck is nuts ... etc. etc...
It doesn't have to be fancy.. just say "idiot, idiot, you are the idiot."
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree with TC. I have seen this myself. I have had test run and months or years later when I would request my results on paper, only half of what was found was told to me. It made me so angry.
Did your doctor do a WB and if so did any bands show up? The test can be negative but still have bands show up that are significant to Lyme Disease. Most doctors are too stupid to understand what each band means.
Too many of us have been told it is all in our heads. That is just ludicrous! There can't be that many people that really want to be sick and have their lives ruined. Most Lymies that I know are the most normal people in the world.
Forget this duck and find a real LLMD!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
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 the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
posted
electrolite, I'm very mad at your doctor for
you. But take comfort that it's a Lyme
rite of passage to be told "it's all in your
head." Hopefully you won't need to see that
ignorant doctor anymore. When you see an LLMD
he/she should be able to refer you to a Lyme-
sympathetic primary care doctor. I wish doctors
could have the courage to just say they don't
know, instead of blaming the patient!
Posts: 311 | From CA | Registered: Jul 2008
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bettyg
Unregistered
posted
E, HOG WASH on your dr!
check your profile at top for private message of texas llmd i'm sending to you; best in your state!!
you're NOT CRAZY; THEY ARE! it takes one to know one ....
look at my newbie package links; look for something by MARIAN, neuro aspects...great info!! i can't remember name of it but you'll know it when you read it in table of contents at beginning ok!!
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Yeah, I'm a psych case too.
"I'm not okay, you're not okay, no one is okay."
We're all nuts.
Oh, I am so sick of hearing that!
It was bad enough when I was stuck in with a male doctor (brand new in that office, never met him before) because my doc was out of town. He took one look at my chart, my symptoms, and my 2 ER visits and told me I just needed a psychiatrist.
Then he kept having me come back for follow ups and basically just kept telling me the SAME thing, that I needed a psychiatrist.
Once I finally got back in with my doc, she was upset with him for saying that.
But then after she ran all the tests and couldn't find anything, she started singing the same song.
So I guess my new theme song should be Prince's "Let's Go Crazy."
I'm so looking forward to seeing the LLMD in 2 weeks.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi electolyte,
Please do not give up. Doctors are not "one size fits all". Some are good; some are not.
I have a wonderful psychotherapist. When I told her I suspected I had Lymes we talked about it over and over.
We still do.
I have an appt. with a LLMD March 17. In the meantime I went to a new PCP last week.
When I gave her my list of symptoms she said "there are too many things going on here that don't seem related. I can not talk to you further until I look at your psychiatric notes."
With that she walked out of the room and sent the nurse in to "release" me.
It was humiliating, degrading and once again I questioned myself.
I think a lot of us have been in situations similar to yours (unfortunately).
Please start your search ASAP for a LLMD. As others have said, it takes a long time to get an appt.
Best of luck to you and please don't give up.
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
I was lucky in that my therapist agreed to watch Under Our Skin, read Pam's book Cure Unknown, and now, guess what............he believes HE has chronic Lyme too! No lie. He had Bell's palsy 20 years ago, preceded by a fever and 20 years of tendon issues and now cardiac issues. He's crawling with spirochetes and would never have known if he didn't have me as a patient.
Hope you find a good PCP, LLMD, and a therapist. Many of us have been through what you're experiencing. You're in the right place.
-------------------- 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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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
We were told the same thing. And, I would bet nearly everyone on this board was referred to a psychiatrist/therapist.
If your gut is telling you it's something, then it's something. Get to a Lyme doctor ASAP.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I'm a newbie and I am asking the same type of questions under "Can it still be Lyme" as I was just told my symptoms are the result of emotional stress. Granted my neuro was more tactful but the result is the same: "I'm nuts". The funny thing is I just started seeing a therapist (on my own) because I'm depressed (and angry) over not getting better.
Everyone here has been very supportive and seems to be in the same boat...make that a cruise ship...it's the only thing big enough to hold all of us I think. Find a support group if you can, I am looking forward to seeing mine next week. It helps when you don't feel so alone.
Posts: 151 | From Kingston NY | Registered: Nov 2008
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Please--do yourself and other Lymies a favor and don't go along with going to a psych!
The drugs they would give you are not going to treat the disease, and have horrifying side effects, including suicide, homicidal rages, brain damage, excessive weight gain, diabetes, and sudden death.
And, by accepting a psychiatric diagnosis, you are putting yourself at the mercy of a profession that routinely locks people up when they have committed no crime, drugs or electro-shocks them without their consent, takes $$$$$$$$ from drug companies to promote dangerous drugs, uses sex to gain support or seeks sexual favors from patients, etc.
They can use the diagnosis to destroy your life.
I'm not kidding.
Please see an LLMD, and get some real help.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Cass, I asked before. Can you please relay your occupation/experience that gives you the ability to see these terrible acts you describe?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yours is a typical story electrolite. Everyone here has given you great advice.
#1: Collect and organize your medical records from that physicians office. #2: Discontinue contact as much as possible, if not leave all together and ask members on here if they have a primary that would be sympathetic to your plight.
I have a list of physicians in Texas that is growing. It may or may not be useful. Texas is surprisingly gradually gaining ground again. I've found a lot of "under the radar" physicians treating and caring for Lyme Disease.
A quote from Pamela Weintraub's book, "Cure Unknown," came immediately to mind when I read your post here.
". . . 'chronic persistent denial of chronic persistent infection' was a social pathology as well as a medical epidemic, and the afflicted were the physicians themselves."
("Cure Unknown," Pamela Weintraub, p. 140.)
I think you should listen to your own instincts, electrolite, and pursue accurate evaluation for Lyme and possible further treatment.
Do this with an LLMD.
You're not the one with the psychiatric problem, it's all the doctors who are in denial about the Lyme epidemic that have the "psychiatric" problem.
Whether they are exhibiting Willful Ignorance and/or are trying to duck and hide and pass the challenge of treating a complex disease on to another profession like psychiatry, they have no right to transfer their personal and professional incompetence and inadequacies on to their patients by telling them it's all in their head.
It really is unconscionable what these doctors are doing.
Please see an LLMD.
Let us know how you do, k?
Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
electrolite,
Sadly, there are many doctors out there that have such big egos that if they can't figure out what is wrong, it must all be in the patients head.
I went five years of misdiagnosis and had been to every specialist I thought there was, including several psychiatrists. I was just going through the motions of what they told me to do because I was too sick to think straight or fight.
But even the psychiatrists went back to my doctor saying they felt it was a real medical problem and yet my doctor in the end said he wanted me ADMTTED for psychiatric evaluation when my husband asked for more extensive lyme testing.
Again, I went and they AGAIN told me they couldn't admit me since I didn't fit the criteria of needing this. Guess I lucked out.
In the end, this doctor dropped the entire family as patients and said it was obvious we didn't respect his medical expertise.
In hindsight, that was the biggest blessing we had and I was diagnosed by another doctor through Igenex and didn't need to waste anymore time with this incompetent duck.
As others have said, I would get a new doctor but make some calls around before jumping. The best I could get was a PCP that said she did not treat lyme but that she did have other lyme patients and would keep an eye on the other things.
You do not need to put up with the crap from some doctor that obviously has no idea what they are talking about. And they surely don't deserve another penny of your money for this garbage.
Good luck and keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Thank you so much, everyone, for your responses! I am overwhelmed by the kind responses by all of you.
I really do feel supported and encouraged and understood, which is so helpful after being treated badly so many times by doctors.
I find it easy to doubt myself in the face of ridicule or accusation, and it helps so much to have an objective point of view to reassure me of what the truth is.
I have been tested for Lyme using IGeneX. I had a Western Blot done in October 2008. Here are my results:
IGenex Western Blot IgM result:
**31 kDa: IND **39 kDa: + **41 kDa: IND the remaining bands were negative
I told this doctor that I had a Lyme test done previously that showed positive bands, but his response was that the Lyme is gone now because the test he ordered had negative results.
I do have my lab results from this doctor. Keebler, thank you for the link to Specialty Labs. It helped me figure out what exact tests were done. Below are the tests he ordered from Specialty Laboratories:
Babesia Microti IgM antibodies, <1.16 titer -- testing method IFA My result was <1.16, so it was negative.
Borrelia Burgdorferi IgG antibodies, <0.80 index -- testing method EIA; probably ELISA My result was <0.80, so it was negative.
Ehrlichia Equi, HGE, Anaplasma phagocytophila IgG antibodies, <1.80 titer -- testing method IFA My result was <1.80, so it was negative.
Ehrlichia Equi, HGE, Anaplasma phagocytophila IgM antibodies, <1.20 titer -- testing method IFA My result was <1.20, so it was negative.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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posted
Why is everyone saying to get a copy of my records from this doctor right away? Is something going to happen to the records or is there a reason I need my doctor's notes about his psychiatrist recommendation?
Keebler, thank you for all of the helpful information and links. I will be reading through them all.
I appreciate the list of labs to run and hope to get those tests run by a LLMD.
I have tested positive for EBV, in July 2007, and I think Chlamydia Pneumoniae could be a problem also.
I am surprised that TIMACA was helped by anti-viral drugs. I have heard they are toxic to your system and not helpful, but I don't know too much about them.
Actually, I have been seeing a counselor regularly since August 2006, for 2.5 years now. He is very helpful and a lot of what we discuss is my struggles with my illnesses.
I didn't know there are LL therapists. That is interesting. That could be very helpful. How could I find one?
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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posted
Starfall1969 and Leelee, I totally relate to your stories. It really is a comfort to know that I'm not alone in this and that others can relate to me and understand my situation.
Tdtid, I'm sorry that your situation went that far, but I'm glad that you finally got away from that bad doctor.
Cass A, I don't want to go to the psychiatrist. I disagreed with the doctor and told him that it wasn't all in my head, and that I don't want to take medications from a psychiatrist.
I had no idea it was that serious regarding psych evaluations, though.
Again, thank you all for sharing your stories and suggestions. It has been so helpful for me.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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bettyg
Unregistered
posted
cass, i too would be interested in your work experience or medical background for the advise you gave above poster. thank you cass
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Friends,
I sent this message to SeekingHelp. However, as others have asked about my experience, here it is!
I didn't see your request before to relay my experience with psychiatric abuses.
I have worked with Citizens Commission on Human Rights for 14 years, mostly as a volunteer dealing with legislation in California.
I have personally done many investigations of abuses, including forced treatment that lead to death. I currently have in my possession the court papers of an MD whose license to practice was revoked because he refused to get a psychiatric evaluation, which he was ordered to do because "someone" (not a patient) said they "thought" he was mentally unstable.
I also have advocated for parents of kids in special education, and have worked for 10 years on the issues of restraint and seclusion, including testifying before the California legislature, holding rallies on the steps of the California capitol, working with moms of people restrained, etc.
I have collected thousands of documents relating to the effects of psychiatric drugs, pharma buying favorable reports on drugs, lawsuits, actual physical diseases being ignored to put people on psychiatric drugs, deaths of the elderly due to psychiatric drugs, screening kids to put them onto expensive psychiatric drugs, etc.
I keep about 50% of them on CD-ROM. The rest--about 10 file drawers full--are hard copy.
Best,
Cass A
PS--if someone wants a document on a particular issue, you can PM me, and I can send you some electronic files on that subject.
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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bettyg
Unregistered
posted
cass,
god bless you for taking the time to tell us all what your background is, and why you've said what you have in many posts.
you knew things we didn't; very intelligent answers, so i wanted to know more about you and asked. thank you for giving your info.
thanks for offering to help others with all your documentation you've kept over the years.
i copied your comments on your post and emailed to TINCUP so she would be aware of this for the possibility of using you/files in FUTURE !!
so again, big thanks! THANKS FOR CHOSING TO DO WHAT YOU HAVE DONE AS A VOLUNTEER!
some RNs note they are RNs when they give out medical advise, etc.
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear BettyG,
Thanks for your kind words!
Here is just a sample of what came to me in the last 24 hours (which also included data on the indictments of several nursing home employees in Kern County, California, for killing elderly residents with antipsychotics).
Three years have elapsed since FDA medical officers reported the findings of their comprehensive review of clinical trial data at an FDA pediatric advisory committee hearing (March, 2006). The review included 49 randomized, controlled clinical trials in the pediatric development programs, as well as postmarketing adverse event reports (AERS).
The evidence shows that hallucinations and other psychotic symptoms emerge in children prescribed every one of the ADHD drugs: In controlled trials, only children taking the drugs suffered treatment-emergent "Hallucinations involving visual and/or tactile sensations of insects, snakes, or worms..." whereas none of the children on placebo hallucinated or became psychotic.
Further underscoring that the drugs are to blame: Dr. Andrew Mosholder and colleagues report, that in 90% of the cases, "there was no reported history of a similar psychiatric condition." The authors note: "Patients and physicians should be aware that psychosis or mania arising during drug treatment of attention-deficit/hyperactivity disorder may represent adverse drug reactions."
The findings have finally been published by the Amer Academy of Pediatrics in its journal, Pediatrics (Abstract below).
It is exceedingly troubling that publication of such vital drug safety information was held up for three years--especially since this analysis had been vetted at the FDA.
One can only suspect that the delay was due to major conflicts of interest--the worrisome scientific findings collide with the financial interests of the American Academy of Pediatrics. http://www.aap.org/donate/fcfhonorroll.htm
AAP- ADHD diagnostic criteria (2000) expand the roster of children who will be "diagnosed" with ADHD--indeed, they recommend AGAINST screening for possible biological malfunctions: "the AAP recommends that other diagnostic tests be discarded in determining an ADHD diagnosis. Screening for high lead levels, for example, or abnormal thyroid hormone levels should not be considered a routine corollary in the ADHD diagnosis." http://aappolicy.aappublications.org/cgi/reprint/pediatrics;105/5/1158.pdf
AAP Treatment recommendations promote the use of drugs: http://www.aap.org/pubserv/adhdtoolkit/index.htm The ADHD Management Plan - Sample 1 outlines behavior improvement goals and a medication schedule with details regarding timing and possible side effects. The ADHD Management Plan - Sample 2 outlines behavior improvement goals and a simple medication schedule.
Andrew D. Mosholder, MD, MPHa, Kate Gelperin, MD, MPHa, Tarek A. Hammad, MD, PhD, MSc, MSa, Kathleen Phelan, RPha, Rosemary Johann-Liang, MDb.
PEDIATRICS, Vol. 123 No. 2 February 2009, pp. 611-616
aOffice of Surveillance and Epidemiology, Center for Drug Evaluation and Research, US Food and Drug Administration, Silver Spring, Maryland; bHealth Resources and Services Administration, Department of Health and Human Services, Rockville, Maryland
ABSTRACT
OBJECTIVES. To gain a better understanding of the capacity of psychostimulant medications to induce adverse psychiatric reactions and determine the frequency of such reactions, we analyzed postmarketing surveillance data and clinical trial data for drugs, either approved or under development, for the treatment of attention-deficit/ hyperactivity disorder.
METHODS. The US Food and Drug Administration requested manufacturers of drugs approved for attention-deficit/hyperactivity disorder or with active clinical development programs for that indication to search their electronic clinical trial databases for cases of psychosis or mania using prespecified search terms. The manufacturers supplied descriptions of clinical trials, numbers of patients exposed to study drug, and duration of exposure to permit calculations of incidence rates. Independently, cases of psychosis or mania in children and adults for drugs used to treat attention-deficit/hyperactivity disorder from the Food and Drug Administration Adverse Event Reporting System safety database were analyzed. Manufacturers were asked to conduct similar analyses of their postmarketing surveillance databases.
RESULTS.We analyzed data from 49 randomized, controlled clinical trials in the pediatric development programs for these products. A total of 11 psychosis/mania adverse events occurred during 743 person-years of double-blind treatment with these drugs, and no comparable adverse events occurred in a total of 420 person-years of placebo exposure in the same trials. The rate per 100 person-years in the pooled active drug group was 1.48. The analysis of spontaneous postmarketing reports yielded 800 reports of adverse events related to psychosis or mania. In 90% of the cases, there was no reported history of a similar psychiatric condition. Hallucinations involving visual and/or tactile sensations of insects, snakes, or worms were common in cases in children.
CONCLUSIONS. Patients and physicians should be aware that psychosis or mania arising during drug treatment of attention-deficit/hyperactivity disorder may represent adverse drug reactions. Pediatrics 2009;123:611-616
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Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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bettyg
Unregistered
posted
cass, WOW! signing off for tonight/this early am! thanks for sharing!
posted
Hi Electrolite! If it's in YOUR mind that how can it be IN MINE too? How did you know to make up the same symptoms as the rest of us?
I bet this doctor believes it was some sort of psychic communication via the internet as in "Cybercondriac" or was it something more along the lines of "The Secret?"
Is there any scientific proof to psychiatry? If you go to two different ones you never get the same exact diagnosis. How can this be?
It's all open to the interpretation of the shrink because nothing about them is scientifically valid.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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Dawnee
Unregistered
posted
Aw hon! What a crappy thing to go through...and I've been there. I'm 31 and last year I was told also that I just needed to see a psychologist because everything was NORMAL! I finally diagnosed my own self and found an LLMD. Came back CDC positive! You already know you can't trust the labs that did your bloodwork.
I'm sorry you went through that... it is something that almost all of us have gone through with ducks.
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posted
You may want to get a psyc evaluation anyway. I finally gave in just to prove my primary care physician and the other doubters wrong.
Posts: 11 | From Maryland | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You asked: "Why is everyone saying to get a copy of my records from this doctor right away?"
Because you won't be going back and you need your records for your next doctor.
posted
I have to differ with some of you on the use of antidepressants and other psychotropic drugs. They have their place, and they can and do save lives. Untreated severe depression can have a fatal outcome: suicide.
I myself am an example whose life was transformed by Paxil, an SSRI. It was literally a miracle drug for me, and for others in my family.
Lyme infects the brain, we know that. It just follows that such an infection will cause mood abnormalities. Yes, that will resolve when all the organisms are eradicated, but we know that takes years in many cases. To the suffering patient, it is wise to seek out a good psychiatrist, preferably one knowlegeable about Lyme.
Someone mentioned 5-HTP. I tried that recently and felt waves of nausea and sweating that were unlike anything I ever experienced on an SSRI. Remember herbs, vitamins, and natural substances are not regulated as to purity or efficacy. And if any of it comes from China, you really don't want to touch it. Imagine the types of places that grow these herbs, spray them with who knows what, and store them in places that may be crawling with vermin. Years ago, many people became permanently disabled, some died, after taking L-Tryptophan, a natural substance, from Japan. Jus because something is "natural" does not make it safe, or effective. The vitamin and supplement business is a HUGE industry itself, just like Big Pharma.
If your anxiety and depression are such that you feel that life is not worth living, you need to seek professional help. Vitamins and herbs are not the answer in these situations.
I agree that there is lot of inappropriate prescribing of drugs for ADHD. That situation us out of control.
But modern antidepressants do have a place in treatment of Lyme patients who have brain involvement, or who just otherwise have trouble coping with this disease. Just my opinion, I've seen it work wonders on myself and others.
Yes, you can get off of Paxil. You transition to Prozac which has a much longer half-life, and slowly wean off the Prozac, which is much easier to wean off of.
-------------------- 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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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Paulie,
I'm happy to hear that Paxil worked for you!
SSRIs may have their place, but they are tremendously overprescribed due to savvy marketing and suppression of the full data about their side effects.
Unfortunately, an adverse effect of SSRIs is suicidal thinking, and in populations (such as our military) where SSRIs are heavily used, the suicide rate goes UP, not down. Currently, more GIs take their own lives than are killed in combat.
In fact, the statistics now show that a person who gets into the public mental health system has a 25 YEAR SHORTER average lifespan than the rest of the population. This is not reassuring to me.
I'm soooo happy to hear of a way to get off Paxil! I know of people who are desperate to do that!
Herbs can be tricky (or contaminated, as you state). I, too, have had some serious adverse consequences while taking herbs.
All in all, I would still try out B vitamins and B 1 in pretty large doses before deciding that I needed to try psychiatric drugs.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
...hehe...an HMO Dr saying its all in the head...heh.. yeah... been there, done that. If I would have listened to my HMO dr, the HMO neuros, Id still be searching for the elusive answer to why I had over 60 different symptoms come and go, driving me insane in the process vs getting treatment and feeling 100% better then when I started treatment.
Very common story, and hopefully you can get some help and be on your way to good health again.
Posts: 514 | From . | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Keda, thanks so much for your information. You have no idea how helpful it's going to be for a lot of people. She works at the childrens hospital. I've got a few cases that need someone like her to evaluate. This is positive news.
-------------------- 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.
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Keda,
I'm so happy for you!!
In California, there was a research project funded by the State to look for physical diseases in people who were getting psychiatric services via public programs. Even excluding Lyme, which wasn't tested for at that time, about 36% of them were found to have an active, important physical disease!!
You can read the report and how to do cost-effective physical evaluations on mental patients at this site. It is called the Medical Evaluation Field Manual, which you can find by using the alphabetical index. http://www.alternativementalhealth.com
Hope this helps.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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thanks for sharing!
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