There really are no decent LLMD docs I could find in the Chicago area and of the highly recommended docs I coudn't get an appt until like Feb.
So, I went to a local internal med doc and explained everything. He doesn't really think I have Lyme but to be sure he ordered a "Lyme IgG & IgM Ab Western Blog". I had my blood drawn at a Lab. Not sure who actually processes it.
Also, he prescribed 100mg doxycycline 2 times a day for the next 4 weeks. He said if I do have lyme this take of it. doxy was the same advice I saw in my initial post. He also thought that if I don't have lyme, I may be possible I have some sort of low grade infextion in the external ear cartliage which may be why it still hasn't gone back to normal.
I still have my suspicion of polychondritis and am seeing an expert on that later this week.
Posts: 14 | From Chicago | Registered: Nov 2007
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posted
Well, if the test is not going to Igenex, it will likely come back negative. If it's positive, then don't ignore it!!!
200mg of doxy per day for one month won't do much. Sorry.
Keep us posted and let us know which bands show up on the Western Blot. The only problem is with inferior labs [for lyme]...They don't test for ALL BANDS. That can be a big problem!
PS...Let us know if you "herx."
PSPS... One thing that makes me think this is Lyme is that your problems began when you got a shot of cortisone. That's a big sign it could be Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
I thought 200-400mg a day of doxy was adaquate for early lyme treatment. Is there something else he should have given me?
Posts: 14 | From Chicago | Registered: Nov 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
for very early lyme, meaning if you catch it IMMEDIATELY after the tick bite, 400 mg doxy for six weeks is the minimum i would trust.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
basically, i would try to obtain a high dose of doxy from your local duck (a difficult task, but possible if you keep bugging him and maybe bring him some ILADS literature) until you can get into the LLMD in february. it sounds like you've been infected for longer than a week or two. better to be safe than sorry.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
You may be ok, Robert- so far you are doing pretty good. Yes, 200-400 mg is standard for Lyme. Most docs go for the 400 and you have a name typically associated with men and are generally probably presumed to be on the 400 mg side of the spectrum by readers here because of that!! BUT 200 mg a day MAY be enough- but is **maybe** good enough when dealing with a disease that can become chronic & disablinG? A disease that can cause chornic pain?
No. Maybe is not good enough, in my book. You are in the leagues of the bitter chronics*)! Or at least the trying-to-be-helpful-don'tend-up-like-us chronics!!! Better safe than sorry is our creed*)!
If you are a big man, 400 would be appropriate most likely... I was at 400 mg when I was on Doxy with an LLMD and I was 112 pounds at the time. If you are a smaller person you may be ok and even if you are a larger person you MAY be ok. 200 mg of Doxy can do amazing things with early Lyme. But 400 can wipe it out!!!
I think we here just know that you can end up here for- for forever!! Forever. Never be well again as long as you live. So when we hear newbie and 200 mg, we get protective and snarly and think, DOCTOR, give this person what WILL save them no matter what instead of what SHOULD work most likely...
So we are not meaning to be rude, speaking for the entire forum, we are trying to be emphatic in a caring way(*)!!!!
Merry Xmas- May it be your only Xmas with Lyme, Meaning Well, Sincerely, Sarah who was treated with 200 mg for a month TEN YEARS AGO NOW caught at time of bulls-eyes rash and grossly, grossly undertreated
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Posts on abx amount aren't meant to sound pushy but when so many people have been under treated we all just want to scream from our roof tops the correct dosages.
On the other hand...if your duck will not give you anymore than what you have don't stop taking it. Continue with the 200 mgs and get yourself to an LLMD. Maybe you can even sweet talk your doc into a refill while your waiting for an LLMD appt.
I have been through rounds and rounds of abx. My LLMD just had me start on 200 mg of Doxy yesterday. I know it is a low dose but I am not tolerated abx well right now but I am also not tolerating symptoms. This is just a small dose so that the Rocephin doesn't put me into meltdown when I start again.
That is why you need a good LLMD. You can trust most of them and they usually have a method to the madness.
Good luck to you...kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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adamm
Unregistered
posted
200 mg/day started 5 days after my bite completely
failed me; I developed encephalitis WHILE on this!
(although this was probably from Babesiosis, which
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Robert,
I started treatment on 400mg/day/doxy; one-half in the morning with breakfast, and the other half with dinner. I weigh 130 pounds.
You have great advice above. Hope you can find a way to start treatment earlier than February. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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posted
"I think we here just know that you can end up here for- for forever!! Forever. Never be well again as long as you live. So when we hear newbie and 200 mg, we get protective and snarly and think, DOCTOR, give this person what WILL save them no matter what instead of what SHOULD work most likely...
So we are not meaning to be rude, speaking for the entire forum, we are trying to be emphatic in a caring way(*)!!!!"
Well said!!! We're protective of you, Robert...our new friend!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keep in mind I just took the Western Blot test yesterday and should have the results in about a week. So, right now I think it is just a precautionary treatment.
When I get the results I will get a copy and post them here for furhter advice. If it shows up possitive I will definately double up on my dose and try and find an LLMD where I can get in earlier.
Posts: 14 | From Chicago | Registered: Nov 2007
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Why do you say this? Is this because their technicians are incompetant and unable to carry out the western blot testing procedures accurately and consistently, or is it because their procedures are different/inadequete from those of a reputable lab?
I'm just trying to understand how a lab can go on peforming improper testing that can affect the lives of so many people and nothing is being done about it.
Posts: 14 | From Chicago | Registered: Nov 2007
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I'm just trying to understand how a lab can go on peforming improper testing that can affect the lives of so many people and nothing is being done about it.
Happens thousands of times a day!! Nobody cares!
They spend one week on the testing compared to 3 wks for Igenex.
They don't test for ALL possible bands!!!! They leave out two of the most important bands!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Updating this thread with some citations to BAAAD testing. If you gotta stick out your arm, make sure your lab is worthy.. Stick with IGeneX or another LLMD-recommended lab that specializes in tickborne disease testing. Lyme testing is hard enough; don't give a bad lab a chance to mess it up for you.
Michelle ___________________________________
Lyme Testing: The Problems Rarely Appreciated
Many good and sincere physicians have been trained to perceive Lyme testing falsely, and some are even infectious disease consultants.
================
Lyme is a very sophisticated bug. It is partially related to the bug that causes syphilis. There are literally well over a dozen reasons for missing the diagnosis.
First, that bulls eye rash is a good sign you have it. But many other "bite" patterns or rash patterns can also be Lyme. In fact only 1/2 get any kind of mark or rash. And only 25-50% have the popular bulls eye rash. Sometimes a bulls eye rash is not on a part of you body you easily see and so is missed.
1. Lyme can hide by a number of ways from your immune system.
2. If your immune system is not tuned up and working very well you can be found fully negative on multiple lab tests.
3. Most tests for Lyme are antibody tests. Antibodies, also known as immunoglobulins, are proteins that recognize something foreign in the body like infecting bacteria and help remove it. The first and most common test your doctor usually orders is an ELISA antibody test. Again, if the Lyme is hiding well or your immune system is fair, you will come up normal.
Specifically, the ELISA test missed 56% of confirmed Lyme patients (Archives of Internal Medicine 15:761-0763, 1992).
In another study, it was in some ways worse. In this one the ELISA test missed over 70% of people with early Lyme disease, and 46% with late manifestations of Lyme. (Laboratory Medicine 21:299-304, 1990). Meaning, it missed 70 out of 100 people with the early disease. But it was still negative after the bug was in the body for a long time -- still missing 46 of 100 seriously infected people.
4. For some, the Lab is a place of perfect science. A place which has purely objective fact. In Lyme this is not valid. In one study, 55% of the labs could not accurately identify blood samples with Lyme, which led to the conclusion in a prestigious infection journal that: screening tests for Lyme disease are not adequate (Journal of Clinical Microbiology 35:537-543, 1997).
What About the Western Blot? Is That Definitive?
The Western Blot is merely another antibody test. However, it is more specific than the ELISA. The test can test for 25 possible "bands" that relate to parts of Lyme or other infections.
But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs.
Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples.
For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990).
1. Most physicians are taught to do the ELISA first. If that is positive then "confirm" with the Western Blot. The big confusion is that this is not a way to diagnose. It is the CDC's way of generally tracking the movement of Lyme in locations and states. It is not a way to determine whether you, personally, have Lyme!
If you use the Elisa first method with the confirmation Western Blot, you miss massive numbers of individuals with Lyme (Journal of Clinical Microbiology 34: 10-9, 1996). From this two-stage approach, you may have a sense that Lyme is entering your state at an increased rate, but that does not address your individual concern.
2. The CDC guidelines seem to express clearly to me that these two lab tests were never intended to be the final measure of whether you have Lyme. They report the main diagnostic criteria are what you report to your doctor and what they find on a physical, i.e., "clinical findings." (http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm)
3. Another government agency, the conservative FDA, has issued a bulletin explaining that a person may have active Lyme disease and yet may have a negative lab result. Meaning, diagnosis should be based on the history of what happened to you -- symptoms, exposure to the tick and physical findings (http://www.fda.gov/medbull/summer99/lyme.html).
4. Congress and the President have felt that negative labs have been used to keep people from needed treatment. United States Congress Public Law 107-116 explains that labs that are negative have no relation to Lyme diagnosis in a person and refers to the CDC that lab monitoring and testing with Elisa and Western Blot was "developed for national reporting of Lyme disease: it is not appropriate for clinical diagnosis."
Some bands may be fairly specific to Lyme: 12, 22, 23/25, 31, 34, 35, 37, 39, 83***
Finally, some feel the PCR test is the best test. Most PCR tests are performed by laboratory which almost never find it in positive people. However, the PCR test should be done by IGeneX, Medical Diagnostic Labs or another tick disease specialty lab, it is fairly useless. PCR testing can have a false negative of 30% in those with positive Lyme. It is also good to test the PCR from blood serum, whole blood and urine, so they have more ways to look for the illness.
These are excerpts from a book in manuscript by: Dan Kinderlehrer, MD., appearing on the website of Dr. Schaller of Florida (publishes free articles at personalconsult.com). --------------------- ***Note from Michelle: actually bands 18 and 30 are considered specific to Lyme as well.
=========================
================ If I'm not mistaken, the other labs leave out bands 30 - 31 because they are tied to the failed Lyme vaccine of several yrs ago. They are specific to Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Robert, there are a few issues with testing.
One issue is strains. You list yourself as from Chicago. If you have ever vacationed in Wisconsin (I have*)! there is a strain in Wisconsin which will test negative on standard Lyme tests- the Kettle forest strain. The amount of research done so far indicates that there are a great many strains out there, & many that we have surely not yet discovered-
For Bartonella in CA for example, we have 5 human pathogenic strains- but all labs tend to test for one, bartonella henselae. A negative for that does not mean you don't have one of the others.
THEN there's the plain old stupidity involved sometimes. Again, using CA as an example because that is where I am from and know it best, there has never once been a documented case of the strain Babesia Microti in California. NEVER. Not once. BUT it is THE ONLY BABESIOSIS that all labs in CA (excepting 3, UC Davis research lab, Igenex and Public Health Lab in Sonoma) TEST for!!! because it was the first main test for Babs developed. But our predominant strain of Babs is WA1!!!
In MISSOURI, people get tested for Babesia Microti when they have discovered MO1 there- but do people get tested for MO1? NO!!! They have now found MO1 ALL over the heck in the USA btw, it is WIDESPREAD!! Have you or I been tested for it? Nope.
There are few research dollars allocated to TBDs compared to other causes. TOO BAD.
Then you have the actual TESTS themselves. A PCR for Lyme is VERY specific- if you have a positive PCR it is a direct detection test- you can only get it if you have Lyme. but you can take 20 PCRs and only get 1 positive if you have lyme- it is not very SENSITIVE.
The Western Blot & ELISA as a 2 tier system miss many cases. For women, we have a gender bias. Average female response is 4 bands on Western Blot- average male is 6. CDC+is 5. So women start off screwed- but even a man if he has a variant strain other than the main test strain-
The main test strain used tends to be (or used to be if I am out-dated) the Shelter island new York strain, right? That is what i remember...
ANYWAY, if you are from somewhere else, you may have a variant strain which has variant bands. The bands measure antibody response- rather, they map it.
There are also people who are so antibody-impaired that they don't make any- they areblood negative- like the documented case of Glenn Edward Killion, 36, a CAian who was repeatedly blood negative and spinal negative. or Vicki Logan- let me go get that-
This is why Lyme is a clinical diagnosis. Best wishes, Sarah From "The New York Times", 1993. A few excerpts.
Lyme Disease: Does It Really Linger? Those who claim long-term ailments pose a puzzle. By Elisabeth Rosenthal
From her bed at Northern Westchester Hospital Center, Vicki Logan begs to differ with academic scientists who claim that there is no such thing as chronic Lyme infection and that Lyme is cured with at most four weeks of antibiotics.
Since 1987, Ms. Logan has battled headaches, fevers, fatigue, progressive paralysis,seizures, periods of dementia and memory loss so severe that she remembers only the previous three weeks out of the last year. For much of her illness doctors told her she could not possibly have Lyme disease and prescribed no antibiotics.
Two years ago Dr. Kenneth Liegner, a Westchester internist, decided to buck conventional wisdom and try giving her prolonged courses of antibiotics that could kill the Lyme spirochete: she improved somewhat during each course of the drugs, and relapsed when they were stopped. Dr. Liegner became convinced that Ms. Logan had chronic active Lyme infection that could be controlled but not cured through daily drug treatment.
Others, including consultants at the Mayo Clinic, disputed the diagnosis, saying that after months of antibiotics, Ms. Logan - if she ever had Lyme - had certainly been cured. But recently, Dr. Liegner was vindicated: scientists at the Centers for Disease Control and Prevention in Atlanta found the Lyme spirochete, Borrelia Burgdorferi, swimming in a sample of Ms. Logan's spinal fluid.
A handful of cases like Ms. Logan's are challenging conventional assumptions about Lyme disease and igniting a fiery debate about the usual course of this increasingly common infection: Are disastrous experiences with Lyme like hers the rare exception or the rule?
The Lyme organism is extremely difficult to culture, particularly when the disease is advanced, so doctors are left relying on indirect and imperfect tests to determine if a patient with continuing symptoms is infected.
The current Lyme test detects the patient's immune response to the parasite and is prone to false readings. In most cases it is impossible to say with certainty that a patient harbors the bacterium. Even among patients whom all doctors would agree have Lyme infection of the central nervous system - who have a known tick bite, a typical Lyme rash and test positive on all current tests - only 10 percent have spinal fluid samples in which scientists can find the germ.
"In most infectious diseases, you don't diagnose until you identify the organism - which is the sine qua non-anything else is iinferior" said Dr. Mark Klempner, a Lyme expert at Tufts-New England Medical Center. "But in many cases of Lyme we're stuck. We can't find the bacterium. Until we have a better diagnostic test that actually finds or measures multiplying bacterium, we're going to have problems knowing which if any of these patients have an ongoing infection and who might benefit from treatment."
Researchers have come to believe that chronic Lyme may be difficult to detect and treat because it is caused by a very few free floating organisms that are confined to the joint spaces and central nervous system - sites that many antibiotics do not reach. Recent work in Dr. Klempner's lab has shown that the spirochete may spend at least part of it's life cycle inside cells, where they are similarly protected.
Unfortunately, scientific advances have not clarified whether the small number of well-documented cases of chronic Lyme represent anomalies or the tip of a huge iceberg.
There are similarly loud disagreements about how often people who test negative on the standard Lyme antibody tests can nonetheless have Lyme disease. It was because Ms. Logan initially tested negative on this test that she went untreated for years.The newer lab methods have proved that this is possible, but no one is sure how common it is.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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