Monday, September 8, 2008

What are these doctors thinking?

There may be a lot of controversy and nuisances in Lyme medicine. But here is the story of a new patient I saw today. Several months ago, a patient was bitten by a tick. This was followed by a classic bulls eye rash (which he only learned after he looked it up on the Internet). He ignored it. It went away. He had few symptoms except a little joint pain which he attributed to weight lifting. After some time, he developed acute Bell's Palsy. He went to a major University teaching hospital in search of some help. Because he also had a little numbness in the arm and shoulder of the affected side, he was evaluated by the stroke team. (Did I tell you he is his early twenties.) They did some blood work which got lost in the "system." The did a spinal tap and two CAT scans. They then treated him with steroids (predisone) and Valtrex, a medicine for Herpes and Shingles. No antibiotics were given. A month later he went back to the neurology unit to have his scheduled brain MRI, which was done. The neurologist involved came running out excitedly: "We know what it is!" Apparently the lost lab work was found. He had 5/10 IgG Lyme WB bands, meeting the CDC national surveillance criteria for a positive Lyme test. The previously puzzled team of neurologists and experts now proclaimed: "You have Lyme disease!" They gave him two weeks of Doxycycline and sent him out the door.

Comments: The guy had a tick bite, a classic EM rash and the docs at the ivory tower University hospital didn't ask about it. It must be because they are programmed with the mantra, repeat after me: There is no Lyme disease: There is no Lyme disease:... After all, that's what the prestigious New England Journal and the American Neurology Association have said.

Even without that history of tick bite and EM rash: The majority of cases of Bell's Palsy in a Lyme endemic area are due to Lyme disease. Every mainstream text and resource will tell you that. Herpes viruses are an unlikely cause. There is no role for steroids. They spent how many thousands of dollars on a spinal tap, two CAT scans, one MRI and overpriced consultant fees before they even bothered to look at his Lyme lab report.

Two weeks of Doxy? Bell's palsy indicates we are dealing with stage 2 Lyme according to the IDSA. Even stage 1 is treated with 3 to 6 weeks of antibiotics. Gary Wormser himself would recommend that this patient recieve at least 6 weeks of antibiotic therapy.

I couldn't make this stuff up.

20 comments:

Frosch said...

The IDSA guidelines I read never recommended more than four weeks abx. Are you recalling from an earlier version? They used to be more lenient I think.

Lyme report: Montgomery County, MD said...

I stand corrected. The most recent guidelines were more restrictive.
The more recent IDSA recommeded guidelines published by the Neurology Association admit that there is much controversy about optimal treatment for nervous system Lyme. I was wrong about Wormser. He would have recommended two to three weeks of Doxycyline.
Of course IDSA guidelines are in a state of limbo until the new committee is established and develops new guidelines. They claim they encourage ILADS members to apply. What do you think that's all about?

dogdoc said...

I don't follow the politics of things much- are the two big guys in all of this still running the show? I did notice the CDC'c website changed to refer to the "new" 2006 recc's which appeared to me like the politically correct version of the same old stuff. They added in a lot of buzzwords and made it sound like they had addressed more chronic disease states, co-existing tick bourne infections, ect. But when you check the sited references for each conclusion, alot of them don't support the conclusions and some of them don't have ANYTHING to do with what they were talking about. If you have an afternoon and you want a laugh, kick to CDC's link to IDSA and check the sited references versus the sentances they are sited for.
I think they are starting to take some heat, and inviting an LLMD into the group is a politically correct action. I really don't think politics/government and medicine should mix- the political system has evolved into one that works on appearances and looking like one is doing something without actually doing this. Unfortunately, a reportable infectious disease being tracked by CDC brings in right into that arena no matter what.
To just bring some common sense back to this, think of every other chronic bacterial disease we treat. To pull an example out of the hat, think of TB- it was incurable before we started using longterm hevy duty antibiotics in combination. Chronic invasive disease still does not carry a great prognosis. The thing about this- its hard to ignore a patient coughing up blood on you and wasting away in front of your eyes. The signs are well known and obvious. Its much easier to ignore a crazy sounding set of neuro signs, muscle and joint aches, fatigue, foggy brain, ect. Not specifically obvious to any dz for the average dr.
My own field is in a quandry about this disease. It was always thought it could be cleared up with three weeks of an antibiotic. But we've proven it can't in dogs- but we can infect patients, treat them ,and then kill them and culture the tissues and grow live Borrelia. This matches with what we see clinically in patients out in the real world. You can't study things this way in humans for obvious reasons. We are now scrambling around, trying to figure out what to do with the treatment of this disease. Do we have the wrong antibiotics, the wrong doses, the wrong length of therapy? I suspect all 3 from what I see in humans- but it takes time to study these things and figure it out.
Look, I took an oath to help my patients which I still take very seriously. We are here to try to help- medicine is always finding out new things and revising current knowledge. Pretending to be all- knowing does not help us move along in this process. Why can't we talk like who we are- humble docs muddling along doing the best we can with the current knowledge we have?

Lyme report: Montgomery County, MD said...

Gary Wormser and Allen Steere own the disease. Long live the kings!
Not.

Leslie said...

Although I would honestly NEVER wish Lyme on anyone, I wonder....Have any ID drs ever contracted it? Or CDC professionals? It wouldn't take many of them (or family members) to suffer from chronic/persistent lyme before many crucial changes were made in diagnosing and treating lyme, I'd imagine....

dogdoc said...

Leslie- you said it. This is awful stuff and I bet if either one of the top guys or their families got it, recc's would change immediately. Other guys is CDC/ IDSA wouldn't have enough power to face up the big guys and the committee I bet. Although you never know- maybe that's why the new one is supposedly going to be formed with LLMD's on it also!

Yimin said...
This comment has been removed by the author.
MoreOrLesMe said...

More Little Green Men
I met this guy at one of the organizations that I was active in I believe 1993. He was pointed out by our director as a stand up guy who worked as a Biological researcher at Fort Detrick, MD. I ended up sharing a long car ride with this gentleman and we shared stories. He told me that he retired from the Army as a
Bioweaponeer and now worked as a civilian researcher for the Army. During this ride he laughed and pointed to himself with his thumb and said that Lyme was there’s. I said what? He responded not Borrelia in general that has been around forever but Lyme Connecticut that’s been in the news is from us. He said that it
escaped and went wild and there’s nothing that can be done about it and they believed that it would burn it’s self out. He said this information was sensitive because it would be an embracement. I have done some research and I have found references to Lyme and Plum Island Animal Disease Center New York on Google search.

Some interesting facts I found from the CDC Timeline http://www.cdc.gov/about/history/timeline.htm
1951 The Epidemic Intelligence Service was established to help protect against biological warfare and manmade epidemics.
1952 U.S. Surgeon General Dr. Leonard A. Scheele reported that the Communicable Disease Center was ready to combat possible biological warfare.

dogdoc said...

Was afraid that might be real. Suddenly in early to mid 1990's, the literature looks like all of a sudden we forgot everything we knew about Lymes and did an abrupt about face on every diagnostic position on it. I don't understand why they didn't try to do damage control and say they'd found some new strain from Russia or whatever and here's how to diagnose and treat it. Burn out? WHAT were they thinking? A completely suceptible population with a chronic bacteria that doesn't kill its host (or not for a long time) and the immune system can't clear it. Yeah- like that is going to burn out. Don't they have an epidemiologist anywhere in the organization?

dogdoc said...

I just posted on a much earlier comment (I am reading thru the archives to learn). It had to do with fighting to win and messing with my LLMD. I have never been a lawyer type, but money drives the system. Does anyone see a class action with wrongful diagnosis and loss of work/ suffering, ect.? With of course all proceeds going to a new LLMD lawyer fund. Perhaps it is time to realize, the best defense can sometimes be a good offense. Does any one know the IDS involved? Perhaps local Lymes blogs could elicit patients with a diagnosis, a treatment now, and a legit beef? If you want to win- fight fire with bigger fire. It's all about the money (which I believe in not at all). We have some legal prescedence set in the system here and up North esp even in the state laws. Perhaps it is time to go out and defend the good guys that are being hassled. I know- we have taken the correct road and we are right so it SHOULDN'T be an issue. But the guys that actually fix the sad souls with this are being messed with. I know they can handle it and they are correct- but is this the best way to win? I have no anger left (thank you you know who), but isn't it about time someone made a real stand against those that go against our LLMD's? It's all about the hassle factor- if you speak up against an LLMD who was RIGHT, and all of a sudden you have a class action of 50 against you, you will learn to keep your mouth shut. Money changes the system. A sad fact, but thats how the cookie crumbles. These docs risk their lives- read licenses and families and everything that depends on them for us. Isn't it time someone got the heat off of them? Just a thought unrelated here.

dogdoc said...

Just thought of something simpler. If you follow a lot of chronic Lymes patients with Western blots, some should go CDC positive during treatment- right? Does the human medical board work like ours in that a patient/ client just lodges a complaint and then is out of the system ? Then the board is required to investigate and the doc gets a lawyer to help defend ? Wouldn't it be fairly easy for us patients or even drs (they can bring up other drs, right?) to bring up our cases where diagnosis was missed on first negative blot and then we seroconvert when treated proving the disease was missed? I know everyone won't do this- seems like there should be enough to enter complaints vs the drs who are hassling our drs and those who are keeping this wrongful set of standards alive in teaching hospitals.
In know I talk too much. Its therapeutic to be able to do that. But I'd really like to hear some opinions on this one.

dogdoc said...

The rollarcoaster with Lymes. I'm jumping for joy- hubby seroconverted and is CDC positive. I have ammunition if I need it. Right now though, I'm focusing on trying to get ivory towers attention. We need serological studies on chronic neuroborreliosis and what patients do as they are treated- at least case reports to start. I really believe we have a possible provacative challenge test here that could help some folks- ie a simple po Doxy/ Amoxi protocol with a blot pretreatment, a blot in 3 and 6 weeks. I am betting on seroconversion in a certain percentage of the patients. I think we could get response to therapy during that time also- mild herx and some improvements by the end of the testing. My research chemical- physicist parents are showing here aren't they? Keep fixing my brain doc!

Rami said...

I came across your site tonight and boy am I glad I did.
I am one of the many people out there that "thinks" they could have lyme, but no one is willing to listen to me.
I had the standard ELISA test taken 2 weeks ago, after I had already taken 3 days worth of Ammox. and it came back negative and now I am wondering if I should do the Igenex testing. I ordered the kit to take to my PCP, but I don't know which one(s) to do. Any suggestions?
9 weeks ago I woke up with a severe headache and it has not gone away since. 24/7. 1 week after teh headache, my neck was stiff and sore and my left hand went numb. When the headache moves onto my left side, my left eye lid droops down (so I am told), and I have black spots in my right eye and I am very light sensitive.
All testing comes back fine. They say I have a migraine and eventually it will go away. I've yet to get a break and I have been on all sorts of meds, even did the DHE45 treatment. I did do Dox for 10 days, after asking my PCP for it.
Any suggestions? I am desperate, I am going to loose my job and I can't take care of my kids.
Please help......

dogdoc said...

I'm sure doc will post a better comment than this when he gets a chance. He's the expert. I know Igenex is a better test but Lyme's is a clinical diagnosis based on your signs. None of the tests will tell you for sure. My husband had it for many years and got very ill. Even the best neurologists didn't have a clue. Doc had it nailed from the blog and my husband is doing much better. If doc thinks you need to, you can call Barbara at ILADS (international Lymes Doc's society basically) 301-263-1080 and she can get you names and numbers of Lymes doctors in your area. You may have to drive a bit, but they are worth their weight in gold if you do have Lymes disease. Most of the other docs are just not very good with Lymes.

Rami said...

Dogdoc - Thank you so much for the info. I called and left Barbara a message.
I am traveling 800 miles to a headache clinic that I don't think will help much, but I am so desperate at this point, I am willing to try anything and drive anywhere that can give me help.
Thanks again, I sincerely appreciate your time and comment!

Lyme report: Montgomery County, MD said...

When I have pointed out seroconversion to other docs they tell me it is false positive result. They ask: "If its chronic Lyme why are you seeing IgM bands instead of IgG bands." They claim there is no "evidence based literature" which supports the seroconversion theory, or for that matter the Herxheimer reaction. Thank you again Dr. Wormser for you help with enlightening my colleagues about the "real story" of Lyme disease.

dogdoc said...

I don't understand- I have picked up references to seroconversion anecdotally from around the world.
It makes a lot of sense- the Borrelia hides from the immune system in cysts, Lforms, sequestered away in spaces, down and upregulating surface protiens, ect. Should not have a prolonged strong IgG response with that. Besides, it causes immunosuppression as one of its evasions.
If you activate the organism by treating and killing it- its dieing, not hiding. Don't have to be alive to be antigenic.
If you suddenly show any antigen to the immune system, you should get an IgM response first. Then months later an IgG response.
I don't understand what is so tough about this- basic immunology, not rocket science. When did people stop learning how to think?
If you did have a prolonged and high IgG response, we would see immune complex dz- glomerulonepritis, various vasculitis based issues, ect. Not happening in neuroborreliosis or Lyme disease that has not set off autoimmune dz.
This should be straight forward. We need to get case reports published.
I wonder what C6's do over time with treatment? I seen a study by you know who, but not a lot of work on chronic patients. I'm not exactly sure what all the hoopla is in humans with C6. It's just another Lymes specific antibody test. You could make a 23 kD Elisa.
In pets we vaccinate and change our Igm/IgG screens so blot or C6 helps us distiguish exposure to Borrelia vs exposure to vaccine. But it still shows exposure and not disease. And the work has not been done in chronic patients to know what their c6's will do. So a positive culture, it is not. Sigh.

Lyme report: Montgomery County, MD said...

I don't always read all the comments on the blog. The online version of Lancet, the prestigious British medical journal reported last year that Lyme had been weaponized by the US goverment. The claims was not mentioned in the print version. When "mad" scientists are turned loose, mixing and matching DNA at will, without outside oversight, blowback can occur. My best friend is a gene therapy researcher.
At meetings he has been horrified by the sorts of experimentation performed at these government labs.
Ultimately it doesn't matter how Lyme came about. The epidemic and treatment need to be acknowledged. This could easily be the biggest pulic health disaster in all of human history. I pick up medicial journals everyday. There is never any mention of LD. It doesn't exist. Yet it is all I see.

dogdoc said...

Hey- I talk too much anyway. It has helped me work through so many things with this. Feel free to ignore.
I agree with you on the practical end of things. Whatever its origin, it is here and needs to get dealt with. For what its worth, try finding anything on Lymes in the bookstores- I can find books on everything else. Its like you have to go looking for the info if you want it- scientific or lay person.
I really think that Lymes center is needed with everyone working together on the problem and getting some good research on what really is happening going. This is America- we are allowed to say "I have a dream..." We may have to fight for it but politics change, people hang out others to dry when the kitchen gets hot, and so on. There must be a way.

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