posted
Talk about insulting someones itelligence... I spoke with my infectious disease doctor from the Famous Lahey Clinic today who had seen me a month ago and prescribed a 2nd round of Doxy. I explained to him I'm no better, and now im experiencing very painful joints mostly knees and elbows. I now have twitching of my whole body and muscles, body pain all over, night sweats, persistent headache. I feel worse than when I tested positive for Lyme.
He said this doesn't make any sense. Doxycycline is the "Gold Standard" for treating Lyme and that since I've taken Doxy, I can no longer have Lyme. He said he's never heard of any lyme patients describe what i have and that I should consider being treated for stress as these symptoms are NOT indicative of Lyme disease. He assured me that it is IMPOSSIBLE for anyone with Lyme disease to not feel better when taking 200mg of Doxy per day. Is this true???? Does the fact I'm not responding to a second round of Doxy mean this cant be Lyme? God am I ****ed!!!!
Now for the good news........ I got a referal from my PCP to a well known LLMD in NH. I even spoke with him today and I have an appointment january 6th.... Thank you Siciliano and others who PM'd me
Thanks for listening, hope you all are doing well.
Brian
Posts: 14 | From NH | Registered: Oct 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
No, he's wrong, wrong, wrong!!!
Just another ID duck.
Great news on finding a LLMD and making an appointment with them. You're all set now.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
QUACK, QUACK, QUACK!
Can someone please show our new member to the alligator pit? They may find it a happy place to be about now.
I'm sure the gators are hungry... and a REALLY stupid ID duck... like this one... well, that is their favorite meal!
Sorry you were ducked. It continues to happen after all these years.
Funny that the ID ducks haven't figured out how to READ YET!!!!
If they had.. they could easily see they are just plain old STUPID!
Pay that duck NO mind... ok?
And arrogant? OH MY! What a JERK he is!!
You are right. AND.. you are sick. Stress does NOT cause night sweats and does not manifest itself in that way.
I can't tell you what to do... but it wouldn't hurt my feelings if you called his office and left a message asking him if it could possibly be another tick borne disease like Babesiosis or Bartonella? And ask if he is willing to test you for it.
IF you get an answer.. don't be surprised if he says to stay off the internet.
Feel better soon and I am glad to know you have an appointment with someone who doesn't have web feet.
posted
I, like you, tested positive for Lyme. I ended up in the hospital for 6 nights and the ID doctors there told me the same thing. Of course this is at a Harvard teaching hospital in Boston so I should be seeing some of the best doctors in the world.
The attending ID doctor said...."you were treated for 21 days with doxycycline....you are still sick...therefore you do not have Lyme."
I don't know if Lyme is what caused my illness. Maybe I had Lyme, it was treated and then it caused other illnesses. So, your ID doctor's response does not surprise me.
I was released from the hospital and told that they don't know what is wrong with me but that it was likely just a virus. I have been feeling well with no fevers for a week and a half but we will see if I have another relapse.
I may need that LLMDs name in NH if I have another relapse!
Posts: 24 | From Boston | Registered: Nov 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Boston,
Respectfully, how could you 'maybe' have lyme if you tested POSITIVE????
As you may know by reading posts on this forum, one round of doxy will not eradicate lyme.
Unfortunately, alot of people are sadly undertreated and sooner or later they will relapse.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
What are they thinking?
It should be Idiot Doctor - not Infectious Disease...
Some of the worst of 'em come from those ivy league schools... I'm not joking - unfortunately.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Lyme treatment is NEVER one single drug. Combination treatment is required. Rotation, too.
I am so glad to hear that you have an appt. on Jan. 6. That gets you out of receiving multiple posts that I may have felt obligated to share.
I will leave you a few that you might want to read before your appt. It explains a lot and offers many ways for you to take care of yourself.
If you can read these before your appt, you will save so much time.
===============
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
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:
" . . .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. It's best to read the entire article at the site. This is also a good article to share with others who may wonder what is going on and why you need a certain kind of expert.
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.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008)
===========================
There are MANY excellent articles, authored by true experts in tick-borne disease. If you need anything else, let us know.
Between now and Jan. 6, olive leaf extract may serve you well. But I'm not sure if you'd need to stop before any additional testing. It's great to help candida, and may help keep the lyme at bay.
---
To help with twitching, pain and other stuff: a good quality of magnesium, B-6, fish oil and B-vitamins (best with lunch - not too late in the day).
I hope this goes very well for you. Take excellent care of yourself.
posted
Isn't it comforting to know that we can read for 30 minutes on the internet and know more about treating Lyme than an actual medical ducktor???
What the heck is it going to take to bring this disease and its realities to the forefront???
Posts: 131 | From MD | Registered: Jul 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Bb can be killed with that dose but in order for it to be able to penetrate the BBB and have high enough concentration/s to penetrate cells efficiently it needs to be 400mg day.
doxy is just the starting point and this dr is another id iot dr.
good luck
the road is a long and hard one
be vigilant and stay informed
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Brian,
I am so sorry you are having to go through this. I remember the days when we all thought the Lahey Clinic was some wonderful place with great medical care. Sure isn't for Lyme though.
I know I kept getting sent to Briggam and Women's in Boston, also a place I thought they would know, but you don't want to know all the things I COULD have wrong but something else was also going on.
I'm glad you were able to get an appointment with a LLMD in New Hampshire. I believe we had corresponded as well earlier and glad you will be getting in to see him/her.
Atleast then you will get a REAL test. Also, isn't that kind of a LOW dose of Doxy? I'm so sorry you got put through the run around. Welcome. We all do relate. So sad.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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quote:Originally posted by Briannh: ......these symptoms are NOT indicative of Lyme disease. He assured me that it is IMPOSSIBLE for anyone with Lyme disease to not feel better when taking 200mg of Doxy per day. Is this true???? Does the fact I'm not responding to a second round of Doxy mean this cant be Lyme? God am I ****ed!!!!
No---it definitely does NOT mean that it CAN'T be Lyme.
Brian, it sounds like the faith in Lahey that you mentioned before is flagging....sadly, not a surprise.
Again, Lyme is a clinical dx and your ID doc evidently hasn't looked at the Mass Dept of Public Health's FACT sheet on lyme symptoms. Hmmmmm.....
He said he's never heard of any lyme patients describe what you have?
Then he hasn't seen many, is the conclusion.
Just because he hasn't seen it, or his mind can't reach outside his safe, little box of knowledge, doesn't mean that it doesn't exist.
NOT indicative of Lyme disease. Well, it seems he'll need to get our fair state's Public Health Dept up to speed on this "fact" of his.
BY NO STRETCH of the imagination is it THE LYME BIBLE, but for an INFECTIOUS disease doctor to IGNORE what the public health department of his state publishes---
ignorance? Denial? mental disease or defect? conspiracy? he just doesn't give a bling? Your choice.
______________________________________
Excerpt:
What are the symptoms of Lyme disease?
Early stage (days to weeks):
The most common early symptom is a rash (erythema migrans) where the tick was attached.
It often, BUT NOT ALWAYS, starts as a small red area that spreads outward, clearing up in the center so it looks like a donut.
Flu-like symptoms, such as fever, headache, stiff neck, sore and aching muscles and joints, fatigue and swollen glands may also occur.
Even though these symptoms may go away by themselves, without medical treatment, some people will get the rash again in other places on their bodies, and MANY WILL EXPERIENCE MORE SERIOUS PROBLEMS.
Treatment during the early stage prevents later, more serious problems.
Later stages (weeks to years):
IF UNTREATED, people with Lyme disease can develop late-stage symptoms even if they never had a rash.
The joints, nervous system and heart are most commonly affected.
*About 60% of people with untreated Lyme disease get arthritis in their knees, elbows and/or wrists.
The arthritis can move from joint to joint and become chronic.
* Many people who don't get treatment develop NERVOUS SYSTEM problems.
These problems include
meningitis(an inflammation of the membranes covering the brain and spinal cord),
facial weakness (Bell's palsy) or
other problems with nerves of the head, and weakness or pain (or both) in the hands, arms, feet and/or legs.
These symptoms can last for months, often shifting between mild and severe.
* The heart also can be affected in Lyme disease, with slowing down of the heart rate and fainting. The effect on the heart can be early or late.
___________________________________________
So: I and others can research this with lyme brain (cognition) and in a matter of minutes "correct" an infectious disease doctor from a renowned Clinic with government facts, which are usually about 10 yrs behind the times anyway--just as the medical journals are on this disease. Then your ID doc is most-likely not only in the dark ages, he has some sort of mental disorder or something. This is completely ludicrous!
I'm SO sorry you are going through this!
If your doctor is not a PARTNER in your health, his degree, letters following his name, accolades and awards, they mean NOTHING.
I hope I don't sound hostile, with the brain inflammation I am easily angered nowadays.
I am very glad to hear that you found a LLMD---let's hope he gets to the bottom of this for you.
Best to you.
Sharon
[ 10. December 2008, 01:43 PM: Message edited by: 22dreams ]
Posts: 571 | From Massachusetts | Registered: Oct 2008
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posted
I have been told by several doctors, including my own, that other infections/viruses can cause false positives on a Lyme western blot.
I initially tested positive with IgM bands 23 and 41 and no IgG bands. My second Lyme test was positive for 41 IgM and 41 IgG and thats it. When I was in the hospital they ran another Lyme test which was also negative.
So, this is why I do not know if I have Lyme or ever had Lyme. Not to mention I do not remember being bit by a tick and I did not have a rash that I am aware of. This is why I made the comment that I did.
quote:Originally posted by gemofnj: Boston,
Respectfully, how could you 'maybe' have lyme if you tested POSITIVE????
As you may know by reading posts on this forum, one round of doxy will not eradicate lyme.
Unfortunately, alot of people are sadly undertreated and sooner or later they will relapse.
Posts: 24 | From Boston | Registered: Nov 2008
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posted
Ill echo everyone elses sentiments.. ditch your ID dr and go see a LLMD. Youre hearing the same nonsense everyone else here has heard countless times. The unfortunate fact is that most ID drs really dont know squat about lyme. Instead, they and the other neuros and PCP drs would prefer to label you with anxiety or somatization disorder, hypochondria, etc. If that ID knew anything about Bb hed know that there are 3 different forms of Bb, and doxy only kills one of them.
Seek out a LLMD, ..you'll be glad you did..!!
Posts: 514 | From . | Registered: Apr 2008
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posted
Funny thing...The original ID doc I saw told me that the fact that I WAS responding to the Doxy treatment so well, was an indication to him I did NOT have Lyme. This was even after seeing my ELISA (+) and CDC (+) IGM test results through the hospitals own lab! Lord help us all...
-------------------- "You play the hand you're dealt. I think the game's worthwhile."
C. S. Lewis Posts: 36 | From Illinois | Registered: Jan 2008
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posted
I just have to chime in on this one. I'm new at this game, just trying to take care of mom who was diagnosised June 08.
I've been on this site diligently, researching my butt off (and thanks to all who have contributed and all who have helped me !!!!).
And I'd read all the horror stories. But I just couldn't quite grasp how so many ID doc could NOT believe in Lyme.
However, with the number of people on here sharing their horrible experiences, I could not deny that it must be true. That ID did, in fact, stand for Idiot Doctors.
But I had yet to experience it for myself. Initially, my mom was fortunate to have a FP doc who was willing to listen to what I'd learned from Dr. B and willing to follow his protocol. To a point.
Eventually he became uncomfortable, admitting he was NOT LL and said she needed to see an ID. Ha, I said. They typically don't treat it properly if they even treat it at all.
Well, he said....I have the man for you. He's been in practice for years. He's head of the ID department at Riverside Regional Medical Center AND -- the head instructor for ALL the ID interns.
Welllll, I though, this guy HAS to be good if he's teaching future doctors.
Yeah, right...
Once in his office, with test results in hand, mom's told he doubts she has Lyme. Probably a false positive.
Immediately, I know I am not going to like this man.
I ask how many patients does he treat for Lyme? He responds, "I've treated a few over the years." WHAT????
I ask what the success rate was of his treatment of them? He responds, "They all got better."
Hmmmm....getting worse by the minute.
I ask what his treatment protocol is. He responds, "21 days of Doxy and since your mother has already been on that for much longer, obviously she does not have Lyme." (Sound familiar???)
He then starts up with explanations such as it's due to of her age (82), possible neurological problems, yadda yadda yadda...
and ended the appt. with an order for another blood test and "....I'll see you back in a month."
But the best part is when my mom broke bad on him.
She patiently waited the appropriate time for the test results and when they didn't call her, she called the office.
Was told they'd get back by end of day. This went on for a week.
Well, you don't mess with mom, Lymie or not. On the fifth day, she flew into that girl about how inefficient the office was run and how angry she was for being ignored and treated that way. She just went on and on.
The girl must have run to the doc and whined about it because immediately after mom hung up, the doc was calling her back.
But before he got a chance to say anything, she flew into him, too, telling him that she'd worked for doctors all her life (true)...
and had seen more doctors in her lifetime than 10 people put together (also true, due to medical issues) and she'd never encountered a doctor who was as useless as he was.
She went on to berate him up one side and down the other in a manner that would put a Catholic nun's disciplinary tactics to shame (no offense intended to any nuns on here...said only in jest).
Obviously, she never went back and we have since found a LLMD and went to her first appt. this past Tuesday. I had Dr. B's treatment plan with me and remarked that I didn't know how he felt about it. He said, "Oh, we call that "the bible."
In one visit, he declared that due to her results, she DOES have Lyme, he's testing for co-infections, and due to her symptoms he's ordered a brain MRI to check for lesions. He also spoke of IV treatment, depending on outcome of MRI.
Phew...you can get quite a lot accomplished in just one visit when you go to the right doctor, huh?
So I am confident that he's the right man for her.
So much for the Idiot Doctors. They really ARE useless. I hope the Newbies on here will take heed and not waste their time or money on them because it's pointless. I certainly learned that.
God Bless all of you.....
Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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Shosty
Unregistered
posted
Our family deals with some health problems that are NOT Lyme, and deal with similar attitudes , sometimes even worse. For instance, most doctors don't understand type 1 diabetes and think you are neurotic if you test more than 4 times/day, which is ludicrous for type 1, but okay for type 2. Endometriosis is just bad cramps, and if you complain about the agonizing pain, you need a shrink. Etc.
Lyme patients, however, are uniquely angry, which is interesting to think about.
I sometimes think that the kind of language used here, is typical of the kind of polarized community Lyme has become, and that one reason we Lyme sufferers are marginalized is because we are doing it to ourselves.
All this stuff about ducks and idiots, which I have seen for 8 years now, does us no good. We are just as polarized and narrow-minded as they are. This extremism is one reason that we are belittled in every other medical context.
Maybe it is true that some infections cause false positives. I have been trying to figure out if a positive ANA can affect a Lyme test, because a positive case of Lyme can affect an ANA.
The science of all this is in its infancy, and there are many mysteries. We don't know everything either, and simple answers are often not the right ones.
For instance, I have learned a lot from MD's who believe that autoimmunity is a big part of Lyme illness. For us, that has been true, but for others, it has not.
Painting everyone's situation with the same broad brush does noone any good.
Boston, I hope you don't relapse.
My daughter did get well with one antibiotic, by the way...
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