posted
I'm a MD in Maryland in primary care. I don't consider myself a "LLMD". In fact I have never heard of the term till recently, having learned it from one of my patients. I don't think I'm illiterate by any stretch, and actually find the term "LLMD" to be offensive. But, I am open to education, as I hope everyone should be. So, at the suggestion of a patient I stopped by and have been doing some reading. I am impressed with the general medical knowledge of the site, but a number of issues are completely counter-intuitive or just completely make no medical sense at all. So, I'm going to bring up some of the issues that I object to, and perhaps we can have a lively discussion. I'll start out tonight with a simple one, and then over the next few days perhaps we can discuss some of the things I think have absolutely no medical basis. Perhaps I'll learn a bit from you, and perhaps you'll learn a bit from me. We'll see.
1) The entire "testing" thing seems completely out-of-whack. It seems like so many of you are paying hundreds of dollars out of pocket to send your blood across the country to Igenix for testing. There are two possible scenerios that will result. a) test positive or b) test negative. If "a" then people seem to latch on to that as a diagnosis and use that as a basis for treatment. If "b" however, the conclusion is not the inverse. It's not "I don't have lyme disease" but rather "the testing was inaccurate." They rationalize this by saying "The test for lyme is well known to be inaccurate..." etc. Thus, the "flawed" negative test serves as the foundation for treatment.
Thus, to me, the entire idea of testing, and especially paying out of pocket for testing, seems silly. Why bother if you are going to treat regardless? When someone is convinced they have Lyme disease, they will hold fast to this belief regardless of the testing outcome. Am I missing something here? It seems to be a recurring theme on this board - people with negative tests calling into question the accuracy of those tests. Perhaps those people with a negative test result who don't improve with long term abx therapy are not "chronic lyme" patients at all, but rather have some other problem?
If I am reading this the wrong way please let me know. I'll try to post regularly this week on things that don't make any reasonable medical or scientific sense.
Posts: 7 | From MD | Registered: Jul 2008
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posted
The testing is NOT reliable and it is a clinical diagnosis. That is even said by the CDC. And the FDA has issued an advisory on the subject. But, people would like to know for sure because they may have been sick for years with umpteen other diagnoses, and they no longer know what to believe. There is also the issue of insurance and a positive test might help get the insurance company to pay for some treatment.
I can take a lot of time and find all the supporting material to post here, but it has all been done before. Instead, maybe you should go to the ILADS website, where there is some material to read. Also, an excellent source of information is at www.lymeinfo.net
Then there are two books that make good intro reading: one by Karen Forschner and one by Denise Lang. A new book by Pam Weintraub was just published. You can check this out at amazon.com
Although you will get some knowledgeable replies here, many are newbies and can't cite chapter and verse. They are sick, sometimes brain fogged, and haven't got up to speed on the science, which I assume is what you are looking for. This is a patient forum, not a doctor forum, so don't look for doctor type answers.
Another place to look for some answers is this website, since lyme in Canada is the same as lyme in the U.S. and these people have organized their material nicely, easy to read:
posted
I agree with you with a couple of exceptions.
Many people need a CDC positive test for insurance coverage and may use Igenex for their more specificity in their tests.
Also standard labs only test for one strain of babesia, which is a significant problem.
Igenex also offers some more advanced tests looking for the DNA of Lyme bacteria.
Im not a Dr, but I live in a highly endemic area. My son has been sit by ticks several times, has had the bulls eye rash, but only tests positive for 2 bands on the WB. He is also quite ill.
In the end I believe that individuals should be able to make their OWN informed decisions regarding medical care, with the help of a qualified physician, with or without a positive test.
Myself I tested 10 bands on WB years ago-- never got better after 2-3 weeks of abx and now years later still test with 9 bands, plus active co-infections.
After seeing a LLMD-- for 6 months now, having to travel 2 hours to see them and spend appx $500 per visit cash I am getting better, bit slowly.
All I can say is the great Lyme debate should have ended 20 years ago and the focus should have been on better testing and treatment. This has not been the case.
Even I can read research and see the data of how bad the Western Blot test is PLUS the twisted criteria for excluding two key bands OSp A and OSp B, per the Deerborne criteria.
By the way most LLMD's do not oppose the name-- most have been and are referred to as much worse things.
Take care -- and get and read a copy of Pam Weintraub's new book CURE UNKNOWN.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I am very thankful that you are interested in learning more about Lyme Disease. We are a group that have largely been ignored by the medical community and we need more open minded physicians like you for sure.
To add to what has already been said - some "negative" tests have "positive" bands that are exclusive to Lyme. The CDC requires five bands for a "positive" test, although they say that their guides are not to be used for diagnostic purposes (but are used for "tracking" purposes only). Igenex requires two postive bands but they are certain bands (again exlusive for Lyme). The Western Blot relies on finding antibodies in the blood and spirochettes are very good at finding hiding places in our body. Many doctors that regularly treat Lyme will treat based on symptoms and "significant" findings on blood tests as well as positive tests.
I'm having some brain fog today so I'm not expressing myself well. Here is a link that explains in detail the "bands" of the Western Blot and what they mean.
posted
I'm new here and I understand what you are saying, probably don't count much, I have listed some of my test results and I am needing help understanding them.... the last test for RMSF says positive but my doc says NO, why should I pay out of pocket when my test are positive????
I was also recently dx with sarcoidosis but my test may show tularemia...it could be, right?
I don't know what to do beside travel to a LLMD what if I can't get another doc to do anything.....I'm almost afraid to go to another GP here because they might say the same thing..... I would be devastated!
Posts: 5 | From el dorado, ar | Registered: Jun 2008
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posted
Just my 2 cents - this is a patient support forum
It's not that I don't welcome you to learn more about what Lyme patients endure on a day to day basis
If you would like to learn more as an MD ILADS is a great place to start (as others have mentioned). I believe they offer opportunities to learn more about Lyme from MDs who have experience and expertise in this field.
As well as reading Cure Unknown by Pam Weintraub.
It's just that a lot of people on this site are severely ill and some even have cognitive difficulties due to neurological manifestations of this disease
so I don't think you are going to find the type of medically validated answers you appear to be looking for here.
Best of luck
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
I sent MarylandMD a private message.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Thank you for taking the time to take your patient's suggestion and come take a look here.
You can learn a lot of the pain, suffering, and healing process here. Many do know a lot about the medical side of things, too, but as one of the posters previously said, the ILADS might be a better source of medical information.
Most of us have had to be our own doctors here. I was misdiagnosed for 35 years. One doctor (when I was in college) told me not to party so much. Another told me I was dehydrated. And yet another told me I had Somatization Disorder.
I had a CDC positive Western Blot. It was because of my own research that I asked for one then had to listen to the ridicule of my MD. I walked in her office with the test kit I had sent away for myself.
One of the reasons that IGeneX is preferred is that they include bands 31 and 34. Other tests leave off these Lyme specific bands because at one point there was a vaccine that used these bands since they are so Lyme-specific. The vaccine was taken off the market because it made people sick.
After 18 months of treatment I am feeling about 90% of normal, which is remarkable. A year and a half ago I was bedridden, needed help walking, plus other symptoms - memory loss, disorientation, trouble reading, trouble writing, getting lost, night sweats, air hunger, heart palpitations, joint pain, muscle aches, insomnia, food intolerances, diarrhea, stomach pain, weight loss, etc.
Even though you don't consider yourself "Lyme-literate" you are open to learning, you believe that we are really sick, that is more than I can say about the multiple doctors I have been to. I even have to change my gynecologist because of his ridiculing my treatment and telling me my LLMD is a scam. Ends up all the 18 years I've been seeing him he has thought I was a hypochondriac even though I never asked him for any medicine.
Again, I highly recommend www.ilads.org. You may ask away here, and we can answer the best we can .... but you would get answers from doctors there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
If you are truly an MD I think it is good that you want to learn more.
However, this probably isn't the place that you are going to find your validated answers.
Patients look to doctors to help them feel better, to find out what is wrong. Sadly, patients who have never had to battle something chronic will usually take what they say as golden. Once you have been sick for a long time and shuffled from doctor to doctor without getting any help you tend to look for answers on your own.
There is no reliable testing. Most patients cling to test results hoping to find an answer. There are some tests that are very accurate....yeah, my cholesterol is low...yeah..my sugar is right on track..yeah...there is no protein in my urine, etc.
This is not the case with lyme disease. It would be great if we could get a firm answer as to whether we actually have this disease but that seldom happens. Even by CDC guidelines the testing is for research purposes only. If we do get positive results it helps are fight along the way. If I had a piece of better that had positive written all over it no one would doubt my diagnosis. Since I only have an IND result and a positive Bartonella test I am not supported by many GPs.
I do agree with you that there are probably people getting treated for Lyme that might not have it. I don't really see a problem with trying to treat it and see if it works.
I was treated for Lupus after a diagnosis and my insurance had no problem paying for it. Then I was told I did not have it. Then I was treated for probable MS. My insurance payed for all meds including IV solumedrol and home health nurse. Then I was told again, sorry we were wrong. You do not have MS.
Now, for the last 2 years I have been treating lyme disease. I am by no means cured but I am better than I was in 1996 when this hellish journey began. Lets just say that my insurance company hasn't been sending checks to anyone.
My point is that there is no black and white to this disease or many other diseases. There is a large gray area. I was treated for lupus with a negative ANA and a SED rate of 4. I took my doctors word for it that I had it. When I started my own research I realized that the chances are pretty low that I had that disease with those results. Yet, I still took those meds and tryed it.
Whether your diagnosis is Lupus, Lyme, MS or the Chinese flu...you cling to it. Patients who have been sick for years just want to get better.
Most of us have had several of the dx's that I have listed. Only to be told later that it was never that.
This is why we pay those high lab prices. We just want validation for what we are already pretty sure we have.
Piece of mind is worth more than anyone can imagine.
I don't mean to sound rude but this isn't something that any of us take lightly.
I encourage you to read the books others have mentioned. Contact the ILADS. Find out when there will be a conference in your area. Contact someone at the LDA. They will point you in the right direction.
I recently spoke to a local doctor in my area. He wanted a protocol for treating this disease. He went to a seminar and came back blown away. He questioned the doctors and other speakers and got the validation he wanted. He wants to attend a seminar just for doctors to learn more.
I hope that you do find interest in this and maybe you can attend a doctors seminar. We need more people on our side so we can regain trust in the medical community.
Good luck to you, kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
ILADS also offers preceptorships to physicians interested in furthering their understanding of Dxing & Txing tick-borne diseases.
I think it is wonderful that you are interested in trying to learn more. Many doctors are either unwilling or unable to do so.
There is info up top on Western Blot explanations & a newbie link with a lot of info, though I do think you might find more info on the ILADS site.
Steven Harrod Buhner also cites scads of studies in his book "Healing Lyme". Pam Weintraub's "Cure Unknown" was also a good read.
I believe the upcoming review of the IDSA guidelines, with none of the original authors to be included because of their conflicts of interest (holding test/vaccine patents, consulting for pharma/insurance & such), is requiring that they broadcast via the internet contrary evidence to be presented. That would also likely be a good place to get some information.
If you read the bottom of Quest diagnostics lab results, I believe they even provide some reasons for false-negative test results.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Welcome. I can say that this is a great time to be interested in tick-borne infectious disease.....wish I could do it all over again and have a career in medicine specializing in treating tick-borne illness. It's fascinating, if not a little sinister at times. These diseases are where AIDs was in the 80's....just a few people knew something was seriously wrong...
I echo what most of the folks have already indicated. The testing is seriously flawed and most everyone who's been on this road awhile will agree, even the "LLMDs". Other than going in and doing a biopsy of the most likely infected organs (brain, kidney, bladder, liver--this is where the bacteria often establish colonies)....not gonna happen. What is eye-opening is that people respond to long-term antibiotic therapy, it often gets people out of bed and back to work. What does that tell you?
Hope you'll continue to come around.
Posts: 3528 | From US | Registered: Apr 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Another strange note on testing: Quite often someone will have a WB showing only one or two positive bands, even though they are highly symptomatic. When co-infections, such as Babesiosis for example, are addressed and followed by a few months of high-dose Doxy, often they will convert to a blot that is "positive" for reporting purposes.
The presence of co-infections can effect test results.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I agree with Larkspur. I think it is wonderful that you want to learn about lyme disease, but an ILADS dr would be able to explain the answer to your question scientifically.
I can tell you from my own experience, a once negative western blot is now positive and I also just tested positive for babesia. Ive been sick since 2005 after a vacation in the mountains.
Ive met other lyme patients who never tested positive on a wester blot by CDC standards and are now better after abx treatment.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
I love this one. In this summary of presentations at the 13th International Lyme Conference (used for CME credits on Medscape), they sent 500 samples to different labs for analysis. Not only were the results often erroneous, but samples from the same patient often came back with conflicting results.
So yes, the tests might help confirm a medical suspicion, but should not be relied on for diagnosis. Unfortunately, many doctors and insurance companies absolutely rely on test results. We are not always lucky enough to find a doctor who will treat based on history and clinical presentation.
Nice to "meet" you, Shazdancer
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Simply put, as some others have said, the validation of a positive test can help with insurance payment approvals, disability claim approvals, and can guide treatment.
Above all else, it confirms for us what we and our providers highly suspect is wrong with us. That validation and peace of mind is priceless.
If it is negative, we dont' get the above benefits, but in most cases can still try out treatment and see if it helps or not.
Welcome to the board. I think it is great that you are here. I am very impressed that you care enough as a medical provider to search for answers, and to want to hear the voices of Lyme patients.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
WELCOME MD, MD! so glad you found us.
chronic lymie for 38.5 years;
34 yrs. MISDIAGNOSED by 40 - 50 mds/specialists!
let me 1st introduce you to this; majority of us who are NEURO lymies can NOT comprehend long continuous block text. we just can NOT comprehend and read it as is!! so we have to SOB, SCROLL ON BY...
please break up your entire post into shorter paragraphs; instructions are below in my newbie offering of info! thank you.
once i can read your post; i'll start at your edited version and read down thru the comments since you are a DR!
please send me a private message, pm, it's 2 people standing together to right of MY name. thanks!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you! ******************************
we recommend 6-12 WEEKS of doxycycline antibiotics; 2 months symptom FREE before stopping antibiotics.
so glad you found dr. burrascano's 05 lyme guidelines!
call your dr. and DEMAND MORE! you are now in the LYME WAR CONTROVERSY ... another thing you didn't ask for!
please see BELOW LINK about ACTION ALERTS....CALLING 4 WASH. DC PHONE NOS. GIVING THEM YOUR FULL NAME/COMPLETE MAILING ADDRESS AND TO "PUT LYME DISEASE ON THEIR AGENDA!"!!!!
IDSA, infectious disease society of america, are infectious drs. who:
.. do NOT believe in CHRONIC LYME;
.. treat from 1 day to 3 weeks MAX ANTITIOBICS, AND YOU ARE "CURED"! HOG WASH!!
ILADS, intl lyme associated disease society, are our LLMDS, LYME LITERATE MDS, and they:
... believe in chronic lyme AND TREAT US AS LONG AS NECESSARY!!!
... another controversy; various STATE HEALTH DEPTS. FILING CHARGES on our llmds for treating antibiotics longer than 4 weeks!!!
example: see activism; read about DR. CHARLES RAY JONES, KIDS NO. 1 LLMD IN CONN! starting his 3rd year of charges trying to take away his license!!!
*********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. *******************
please go to dr. burrascano's 05 lyme treatment guidelines and print out pages 17-18 ,,, where it talks about dosages for KIDS and adults!!
p.17: Antibiotic Choices & Doses From CBB: Amoxicillin-Children: 50 mg/kg/day divided into q8h doses. My pharmacist did the math for me, & it means: 35 lb child - 800 mg per day 70 lb child - 1,600 mg per day [1 kg=2.2046 lbs]
p.19: Treatment Categories Early Localized - single erythema migrans rash with no constitutional symptoms. Children: oral therapy for 6+ weeks.
According to Dr B's recommendation, your son did not have an adequate amt per day or long enough treatment to eliminate the bacteria. Take a copy to your Dr and see if (s)he will treat according to these Guidelines. Do whatever it takes - beg, plead, throw yourself on the floor and cry if necessary. *************************************************
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. ***************
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posted
Why use Igenex as part of an information gathering process in making a clinical diagnosis of Lyme? Why not rely solely on an Elisa or the standard Western Blotting from labs such as LabCorp or Quest?
Short answer:
The CDC and the Association of State and Territorial Public Health Laboratory Directors (ASTPHLD) removed some of the key Western Blot bands from their testing, 31 kDa (Osp A), and the 34 kDa (Osp B). Specifically, these are two B. burgdorferi outer surface proteins that are highly specific to Lyme.
The reasoning behind the removal of these highly specific Lyme bands from standardized Western Blotting was because Dr. Alan Steere, et al., recognized that due to the unique specificity of these proteins to B. burgdorferi, they would serve well for the development Lyme antigens for the Lyme vaccine. The Lyme vaccine was developed and eventually marketed and has now been taken off the market.
The decision to drop the two lyme specific bands was made at the infamous Dearborn conference on Lyme Disease in 1994 where they narrowed the testing capabilities and criteria to an unconscionable level considering the fact that Lyme is an infectious disease. They felt that if these specific bands remained in testing and were also the same two antigens used for the vaccines, then anybody who was tested for Lyme via Western Blotting would therefore test positive for Lyme Disease.
Igenex, has added the OSPA and OSPB back into their testing. It's a more thorough test. It's as simple as that.
LabCorp and Quest do not include those two Lyme specific bands.
Add to this problem the fact that the testing simply does not allow for the diversity of immune responses that is often seen in Lyme Disease.
Now to elaborate on the above short answer:
The Western Blot testing looks for an antibody response just as the Elisa test does. Antibody testing can sometimes be an indirect measure of infection and false negatives can abound.
From information gathered here, from the Lyme Disease Foundation, from ILADS, and from Medical Doctors specializing in the diagnosis and treatment of Lyme Disease, here are just nine reasons why a patient might be seronegative:
A. Antibodies against Bb are present, but the laboratory is unable to detect them. [Borrelia burgdorferi (Bb) is the Lyme disease bacteria.]
B. Antibodies against Bb may not be present in detectable levels in patients with Lyme disease. Reasons are listed below.
1. The patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.
2. The patient is currently on or has previously taken anti-inflammatory steroidal drugs (such as those taken to treat rheumatoid arthritis) or certain anticancer drugs. These can suppress a person's immune system, thus reducing or preventing an antibody response.
3. The patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing. [I think this reason is very important and prevalent. For this reason, some of the worst cases of Lyme disease test negative - too much bacteria for the immune system to handle.]
4. The patient could be immunosuppressed for a number of other reasons and the immune system is not reacting to the bacterium.
5. The bacterium has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.
6. The patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (2-6 weeks). Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.
7. The laboratory has raised its cutoff so high that a patient's previously positive test is now borderline or negative.
8. The patient is reacting to the Lyme bacterium, but is not producing the "right" bands to be considered positive.
Lyme Disease Foundation 1 Financial Plaza Hartford, CT 06103 (860)525-2000 fax (860)525-TICK Lyme Disease National Hotline (800)886-LYME email: mailto:[email protected]
For further reading, I encourage you to read some of the excellent information provided at the Igenex website. I bring your attention to the following from "An Understanding of Laboratory Testing For Lyme Disease, B. Burgorferi Western Blotting, [ http://www.igenex.com/labtest.htm ] :
The criteria for a positive Western blot to B. burgdorferi developed by the CDC/ASPHLD are very conservative and require 5 of 10 antibody bands for IgG positivity; the original recommendations do not even recognize equivocal or borderline results if less than five bands are detected. Their cut-off assumes that all Lyme patients have similar immune systems. They ignore the diversity of the immune response seen in other diseases. Their studies were problematic in that they primarily focused on patients with early (usually within four months of an EM) Lyme disease. They drew blood in most patients every two weeks during this four-month period and any positive event (five out of ten bands) was counted as a positive patient, even if they were negative at a different time of the study. In addition, the criteria include antibodies to 41 kDa, a common antigen of most flagella-bearing organisms, and exclude two of the most important and specific antigens, 31 kDa (Osp A) and 34 kDa (Osp B), which appear later in the response. A review by Hilton et al (38) in a group of 50 patients with confirmed Lyme disease showed that they would have missed 4 patients by excluding 31 kDa (Osp A) and 34 kDa (Osp B). The author's own laboratory would have missed 2 of 18 proficiency samples by excluding antibodies to these two antigens.
Engstrom et al (11) and Aguero-Rosenfeld et al (12,13) confirmed that almost one-third of all Lyme patients are IgG seronegative during the first year. Two years after physician-diagnosed EMs, 45% of the patients were negative by ELISA. In another study, Aguero-Rosenfeld et al (13) showed that the ELISA response declined much more rapidly than the Western blot response. Their study also demonstrated that the two-step protocol of the CDC/ASPHLD criteria would fail to confirm infection in some patients with culture-proven EM. Furthermore, although a majority (89%) of patients with EM rash developed IgG antibodies detected by Western blot sometime during disease, only 22% were positive by the criteria of the CDC/ASPHLD (13). The Engstrom et al study (11) did not use the IgG blot criteria of the CDC/ASPHLD. They found that 2 of 5 bands gave them a specificity of 93 to 96% and a sensitivity of 100% in the 70% of patients who made antibody. This might imply that they would have had even less sensitivity had they used the more stringent CDC/ASPHLD criteria.
The CDC/ASPHLD criteria (7,36) for a positive IgM Western blot include the 23-25 kDa (Osp C), the 39 kDa, and the 41 kDa, but exclude the 31 kDa (Osp A) and 34 kDa (Osp B). During the presentation at the Dearborn meeting (7), the specificity of the IgM Western blot was reported to be greater than 95% based on several hundred negative controls. Engstrom et al (11) reported specificities of their IgM Western blot to be between 92% and 94%. It has been reported that the IFA and ELISA IgM assays may show cross-reactivity with ANA, EBV, and spirochetal infections (24). However, studies by Mitchell et al (20) and Ma et al (35) did not observe this with their IFA and Western blot assays respectively.
A major disagreement with the CDC/ASPHLD group is with its statement that the IgM Western blot should only be used during the first month after tick bite. They have overlooked their own reported excellent specificity of the IgM Western blot. The author's laboratory (35), studies by Steere (28), and by Jam et al (40) point to the importance of the IgM Western blot in recurrent and/or persistent disease. Sivak et al (41) found that the IgM Western blot had a 96% specificity if the patients had at least a 50% probability of having Lyme disease. A study by Oksi et al (42), using culture and PCR to confirm Lyme disease, reported that specific IgM to B. burgdorferi is sometimes the only antibody detected in persistent disease. They felt that this data supported the idea that some Lyme patients have a restricted IgM-only response to B. burgdorferi Lyme disease.
It is important to note that a positive IgG and/or IgM Western blot only implies exposure to B. burgdorferi. It is only part of the test battery and is not confirmatory for Lyme disease. It does not mean the patient has Lyme disease; that is a clinical diagnosis. It must also be kept in mind that these antibody tests are not static; they change over time. A patient negative in the Western blot may seroconvert to a positive pattern with treatment. Conversely, a patient could redevelop an IgM response, suggestive of a recurrent infection.
I hope this information helps.
Fuzzy
p.s. And please don't take offense at the term "LLMD." Were I to have my druthers, all doctors would be literate in Lyme Disease. It's the nation's fastest growing infectious disease and it is an epidemic in the hyper-endemic State where you and I both reside and/or work.
ALL physicians should make themselves literate in the complexities of Lyme Disease because it is an epidemic. That way, the chances will be far less that this catastrophic illness will go undiagnosed and untreated and be spread amongst an unknowing public.
Osler said, "Know syphilis in all its manifestations and relations, and all other things clinical will be added unto you."
Since the B. burgdorferi spirochete is a cousin to the syphilis spirochete, I should think it would behoove any physician to learn as much as possible about Lyme Disease today.
Posts: 503 | From Maryland | Registered: Oct 2007
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Regarding out of network labs, the simple reason some use them is because they test for multiple strains and report all bands, which the major labs fail to do. I've seen a few Lyme specialists and personally have never been required to use an out-of-network lab.
Testing for me and others I know, whether by an out-of-pocket lab or not, has always been interpreted in the context of clinical history. For example, if a patient is CDC negative with a only few significant bands, this might be interpreted by an LLMD as more important in the face of a really compelling clinical history and presentation (things like tick bite/rash/endemic area/classic symptoms etc) than it would be with a more vague presentation.
LLMDs and patients do not call all negatives false negatives - this tends to happen when the clinical history is clear. For example I know someone who had multiple classic EM rashes and then classic symptoms in a highly endemic area, but was not diagnosed right away. His western blot had several significant bands but not CDC positive. The patient was treated long-term and got much better. I know another who had a few bands and only vague symptoms, the LLMD thought the patient should pursue other treatment strategies before considering Lyme. It's all in the context of the individual patient.
To me this whole question speaks to the problem of over-reliance on simple algorithms, an issue raised by Dr. Jerome Groopman who wrote the bestseller "How Doctors Think." Here's something from Dr. Groopman on his blog:
"...it is critical to remember that many diseases are not "standard," because there is considerable variation among individuals whose biology is, by nature, variable. That means that one microbe can act very differently in different people,... Prototypes and guidelines are always worth referring to, but all care cannot fit into one format."
I think most patients on this site and their doctors agree that the microbiology of Lyme disease, the multiple strains, the myriad presentations and testing unreliability often make Lyme one of those 'not standard' diseases in the way Dr. Groopman describes (whether he agrees or not, and I don't know his views on Lyme).
If you regard Lyme testing in its proper place as just one piece of imperfect information in a very complex puzzle, a puzzle which is different for each patient who walks in the door, diagnosis and treatment of late-stage or chronic Lyme is as much art as it is science. This is where experience counts.
Also I think the original poster may be misinformed about how careful LLMDs are in performing a differential diagnosis. My doctor often considers explanations other than Lyme for stubborn symptoms and has tested accordingly. He's been more careful in this regard than most doctors I've seen in fact.
Hope this helps, but perhaps you should consult the doctors themselves for more answers.
Posts: 621 | From US | Registered: Jun 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, most people will still want to be treated regardless of what their Igenex tests say.
One reason people don't believe the tests is that for some people it will come back negative once, and then positive the next time. This has happened to me. I have only retested after getting negatives the first time because doctors told me they were pretty darn sure I had it. So I begrudgingly retested, and lo and behold, they (lyme, babesia, bartonella) came back positive, and here I am, getting the meds I need now.
So, even on this site, I always tell people, never rule it out. Not ruling it out might have saved my future. I am a lot better now than I was before treatment, when I thought I had CFS.
Also, some people will have Lyme come back positive, but their coinfections will come back negative. They get Lyme treatment, and never get better. Then, if you throw these people some Mepron (babesia treatment....does not work against Lyme), they mysteriously get better. At that point, they draw their own conclusions, and tell others not to trust the bloodwork.
Another reason is that some people treat anyways, despite negative tests, then get better, after manifesting with obvious lyme symptoms during treatment. So other sick people who think they have Lyme see that and think, "that could happen to me."
Also, I think getting the tests done it is a way for people to feel validated, and to have peace of mind that they are doing the right thing. And, a way to prove to other doctors that question them that at least at one point in their lives they had Lyme.
I'm sure there are people who have the bloodwork come back negative and then are okay with it and don't treat, but they probably aren't the people you will find on this website. So it is impossible to know the ratios of who believes the negative results and who doesn't.
I know it probably seems confusing. It's something you can't describe unless you've experienced it.
If you were bitten by a tick a long time ago, and had horrible fevers and migraines and body pains for weeks after, you would want a positive test too. You would think maybe you had contracted Lyme back then. It is only logical. And if it was negative, you would doubt it.
If one has vague MS-like symptoms and can't ever remember a tick bite, but has a Herx reaction on Doxy for two or three weeks and then feels better, then goes off antibiotics and gets worse, can you blame them for wanting a positive Igenex? They just want to know what the heck is going on.
This question you asked is a tough one.
I KNOW I had Lyme, babesia, and bartonella at one point in my life. My symptoms confirm it, I had horrible reactions after tick bites and never got treated (or tested) as a child. And yes, 15 years later, Igenex told me they could find it in there (prior infection, i believe). Symptoms re-emerged when I entered young adulthood.
What I never know is, when is it gone? Am I just tired and in a fog, but no infection anymore? And I don't trust the bloodwork to tell me when it's active, because it never says it is "active", only says prior infection. Honestly, who cares....if I know I once had it, better treat it 10 years later than never. I am sure as heck something serious is wrong with me right now. I owe it to myself to do everything I can to get rid of it to better my life for myself and my husband.
[ 08. July 2008, 02:05 AM: Message edited by: Hoosiers51 ]
Posts: 4590 | From Midwest | Registered: Jun 2008
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quote:Originally posted by MarylandMD: So, I'm going to bring up some of the issues that I object to, and perhaps we can have a lively discussion. I'll start out tonight with a simple one, and then over the next few days perhaps we can discuss some of the things I think have absolutely no medical basis.
The internet is a funny thing. MarylandMD I mean no disrespect, but as a primary care doctor, would you ever physically walk into a live support group for any disease and make this kind of statement?
After reading over the many thoughtful responses here, I'm struck by what was repeated over and over - that you should really be contacting www.ilads.org or other doctors who specialize in Lyme disease if you'd like to debate/discuss these issues.
Posts: 621 | From US | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
--
Regarding your main question about testing:
With over 300 strains of borrelia, the U.S. tests for just one and most labs do not test properly for even Bb.
---
MarylandMD:
You wrote: " . . . I don't think I'm illiterate by any stretch, and actually find the term "LLMD" to be offensive. . . ."
I am sure that you are a very good doctor in your area.
(in just a regular tone of voice here)
I don't know why the term LLMD should be any more offensive than the term, oncologist, or neurotologist - or any other specialty. A LLMD's skill goes far beyond many good doctors who simply are not knowledgeable in TBD (tick-borne disease) or in chronic stealth infections.
The truth about lyme and other tick-borne disease (TBD) has not been taught in medical school beyond, perhaps, a mention - and with false information at that.
The LLMDs who have taken a great deal of time to educate themselves in this area are most willing to share what they have learned. There are thousands of articles that most IDSA members have never seen.
Many LLMDs have attended many seminars or workshops. They talk to each other and share experiences. They listen to their patients and are constantly learning. This is a set of infections unlike most others in so many ways.
Some also incorporate complementary approaches to help patients be as strong as they can be during the grueling process of treatment. Liver protection, addressing the toxic nature of the infection and endotoxin and neurotoxin elimination is vital to good treatment. Adrenal support is another area in which every LLMD must be knowledgeable.
If you are interested in learning more, you can get DVDs of past seminars. Other ILADS doctors would also be happy to talk with you.
Do not take it as an insult that there is this advanced body of knowledge outside of the regular world of the IDSA. It's not been hiding, but the insurance companies have done a good job of trying to keep it hidden.
Most doctors simply don't have the time to devote to learning about this sub-specialty. It takes many hours - years - of research.
I am sure we all hope that you will pursue this and learn more. If you are interested in helping patients that would be great. At the very least, it would be great if you could make come contacts and be able to refer patients the the specialists in this field.
If there is offense to be taken with the term "LLMD" it lies in the deliberate downplaying of the serious nature of TBD by the IDSA and the medical boards of most states.
Please go to the ILADS' site, look around, read some of the articles and get the DVDs of the seminars. Please. Please. Please. Many of us here have not been able to find doctors for various reasons.
In my state there is not one LLMD. My neurotologist told me to get tested for lyme. I had CDC positives for 3 TBD, paid for tests myself as my PCP would not order the correct tests, but she would not treat or even accept the results of the tests, saying "There is no lyme in this state - or even on the entire Pacific Coast." She was wrong.
So, with hope, we thank so very much for your interest. It is very important to us - and it might actually help save a few lives out there - maybe even your own.
Having the knowledge necessary to prevent the ravages of TBD can truly be life-saving. That is not an overstatement.
Cure Unknown: Inside the Lyme Epidemic (Hardcover) by Pamela Weintraub
You can look inside the Weinbraub book and the customer reviews may be very helpful for both books. Amazon has other books about lyme and babesia, etc.
------
[ 08. July 2008, 12:48 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
--
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD would know how to assess/treat if others are present.
Of special note: in someone is without a spleen, babesiosis can be fatal. As with lyme, there are various strains. More information on co-infections can be found at www.igenex.com or www.ilads.org
Clinical Advisor Clinical Feature Issue Story From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )
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.
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others - that should also be assessed in all chronic patients, especially those with neurological symptoms.
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
1 Present a practical approach for making the diagnosis of neuroborreliosis,
2 Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
3 Discuss the relationship between MS and Lyme,
4 Critique the current regimens published for treating neuroborreliosis, and
5 Present my own approach which may differ from some leading authorities.
``Anyone who, in discussion, relies upon authority uses not his understanding but rather his memory.''
--Leonardo da Vinci, Notebooks (c. 1500)
It is hoped this data will provide the reader with a broader understanding of neuroborreliosis so that he or she may better use current and evolving knowledge for clinical decision making.
- FULL ARTICLE AT LINK ABOVE. Be sure to see the second page as it is easily overlooked.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
May I suggest?
Don't waste your efforts here.
If this is a Maryland doctor, I'll eat my hat. Heck, I'll eat your hat too.
A Maryland "doctor" sincerely interested in learning would have access to the Hopkins report on the blood tests showing at least 75 percent of the people are missed.
A Maryland doctor would contact a zillion other doctors before they came here to ask patients for answers.
A Maryland doctor truly interested in learning would call a lab directly if they wanted answers about tests... not post CDC wording and quotes here asking sick patients why they do crazy things and waste their money by using Igenex.
Who has the keys to the lock on the alligator pit?
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi MarylandMD--
I am Happy that you have come here- I wish more Doctors did the same --
The tests used to DX these illness are very poor at best --
My story is that I saw a Picture Perfect Bullseye bruise on my leg 20 long years ago-- but had No Idea what it was -
In a few weeks from bite I started to feel sick and got worse daily --
Threw they years I have been to about 15 doctors that were Totally Useless -
I am a detail orientated person so I would take a complete list of my symptoms - to each doctor-- about 30 symptoms -
Doctors seemed to think it was strange that I did this - to me it seems the smart thing to do -
I was really Surprised to see how the doctors reacted to my symptom list - I would think the doctor would want to have as much symptoms list to help in DX -
It was like they took offense to it - Usually they bearly Look at it tho -- Sad -
Back to the Testing issue --
My tests (WB)were done by Igenx -- tests came back IND - barely any bands showed anything at all -
I have Lyme and Babs Zero Doubt in my mind or my LLMD -- I saw the Bullseye
The Lyme Bullseye is as Sure as Sure gets about Lyme infection -
My LLMD did the tests Only for the purpose of if I had a positive test it would ADD to the known cases in the area -
My first LLMD visit my Doctor studied my symptom list for 10 to 20 minutes - and asked me questions to Fill in the blanks -
From my symptoms I was DX me with Lyme and Babs- I clearly have both-- Zero Doubt --
Co infections make the DX and treatment more complicated but its not rocket science -
I was Very sick and had to be carried in to exam room on first visit )
Within Days of starting Treatment I started to feel a little better each day -
Not until I was in my 4th month of treatment before I Herxed at all -
it was the herx from Hello for 6 to 8 solid months - and then off and on for the next 16 months
It was Very Painful and Zero fun --
Herxes are scary and I had No Idea that as person could feel so bad and still be alive --
Now I feel Perty Good and about 98 percent symptom and pain Free and am getting My life back -
I have a friend who performed WB tests in a lab after she explained How it is done -
I can understand why the tests are so poor- Many Many things can sque the results--
Lyme activity cycle ( about 28 days) Length of infection time- Temperatures in testing lab and of blood to be test in shipmentect -
Usually the the WB tests will find the infection IF the test is given 2 to 4 weeks after infection -
As time passes the results get Less accurate-
after a person has been sick for a year or more the odds of getting a accurate test drops to around 20% or less -
Remember back in 2001 there was Anthrax Letters- the government tested everybody with WB tests -
They Gave Everyone Cipro No matter what the WB test showed --
So it Looks like the government and medical community did not have much Faith in the WB test ether --
the Absence of proof is Not proof of Absence -
Personaly I feel that the Poor Quality of the WB is the Main reason why lyme DX is so much of a problem -
A better test would help Tremendously-
I am Glad you are spending time here to increase your knowledge so you can treat your patients better -Jay-
-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I do have to agree with Tincup-
I did have the same thoughts, but many of us are desperate people and would love to believe that we could help save someone else from the nightmares we've lived.
Rather than take the chance of alienating a doctor and indirectly harming that doctor's patients, we will go out of our way to try to provide information to someone who's question seems designed to antagonize and further inflict emotional harm.
We can get that by walking into very many, if not most, doctors' offices. That is one of the reasons so many are here in need of support.
If you TRULY are a doctor I should hope that you will utilize the resources that have been provided here. If not a doctor, I hope that you will "get a life".
A good website to learn of the emotional and psychological damage uninformed doctors can cause their patients is www.humansideoflyme.com.
I, personally, would NEVER direct an uninformed doctor to this site for a better understanding of tick-borne disease. I would try to give them direction to the resources provided above, but then again that's me.
I should think that the patient who directed you HERE must have serious neurological involvement to think that this would be the best place for you to learn. I truly hope that you will contact www.ILADS.org for information to make a difference in their life, instead of being yet another antagonistic, hurt-inflicting, unfeeling, uncaring doctor they will encounter in their struggle to get help.
Best wishes, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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tailz
Unregistered
posted
I have to admit that I have some questions for doctors, too...
I spent a good number of years on antibiotics (minocycline, erythromycin, trimox) for what doctors were calling 'acne' - though no cultures were ever collected to prove I had any infection whatsoever, let alone one that required long-term antibiotics.
What I'd like to know is why I can obtain long-term antibiotics from my doctor to treat essentially a cosmetic issue, yet at the first mention of chronic Lyme, antibiotics are out of the question.
Also, no doctor ever measured any of my neurotransmitters, yet they had no qualms prescribing psychotropics for me for 15 years to help 'balance' everything out.
If Paxil, Lexapro, Seroquel, Klonopin, etc... worked and provided me with any relief, doctors prescribed these medications for me - no questions asked - at least until I started to convulse whenever I tried to discontinue the Klonopin - consequently, I no longer believe in 'benzodiazepine dependence' either now.
If a patient begins to convulse upon withdrawal of any benzodiazepine, I can't say for sure which bug they have, but I do not believe doctors should be treating them as drug addicts when whatever parasite they have suddenly begins attacking their brains.
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Everyone here have been to many, many doctors, who relied ONLY on TEST results in making a diagnosis.
Doctors tend to not listen, to their patients, or their gut instincts that they should be
developing through listening and experience.
That is why we all crave a positive test. Doctors will not acknowledge the existance of Lyme without the test.
Otherwise doctors just blow you off. Learn to listen. Keep Educating yourself.
Find the courage to do the right thing,put patients first, instead of your fears of IDSA, or insurance companies. Be a real doctor.
Posts: 261 | From Piedmont | Registered: May 2008
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
This is the pits.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
Wish I could rate this thread, give it a gold star for all the excellent and thoughtful replies. Hope it is not a wasted effort on someone who might be a troll. Well, we tried, maybe this is a genuine inquiry. If not, others reading the forum will learn something.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by MarylandMD: So, I'm going to bring up some of the issues that I object to, and perhaps we can have a lively discussion. I'll start out tonight with a simple one, and then over the next few days perhaps we can discuss some of the things I think have absolutely no medical basis. Perhaps I'll learn a bit from you, and perhaps you'll learn a bit from me. We'll see.
I'll try to post regularly this week on things that don't make any reasonable medical or scientific sense.
Whether MarylandMD is a doctor or no, I do think the responses on this thread to the "query" have been nothing short of wonderful. Keebler said it very well is remarking about the poignancy of the replies here.
Troll or not, the responses herein will be helpful to anyone wanting to learn more.
Giving MarylandMD the benefit of the doubt and assuming that this is not a troll's work, I hope that MarylandMD realizes that this is a patient support forum. The people here are sincere and are sincerely ill from an extremely debilitating disease.
I question why someone who professes to be a medical professional would even consider planting himself in the middle of a patient support group atmosphere simply to stir the pot of debate. Why attempt to arise "lively discussion," debate or divisiveness among people who are seriously ill and have precious little physical and mental reserves at times? It smacks of cruelty to me, to be honest.
Be that as it may, I'm so glad that people have responded for the sake of posterity if nothing less.
This is a great thread because of the responses of the patients.
Just my sorry 'ole two cents.
Fuzz
p.s. MarylandMD, as has been suggested to you by Lymenet members far more sage then I, ILADS can entertain your medical curiosity in an efficient and satisfyingly learned way. You might even be able to earn yourself some CME credits along the way.
For your edification, here is a copy of the ILADS Mission Statement:
Mission Statement
ILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
Strategic Goals:
1. Improve physician understanding of Lyme disease.
2. Review, develop and implement clinical research programs that enhance the management of Lyme and its associated diseases.
3. Advance the standards of care for Lyme and its associated diseases.
4. Review, develop and implement programs for physician and other healthcare provider support (i.e. Materials, advice and education).
[ 08. July 2008, 05:39 PM: Message edited by: FuzzySlippers ]
Posts: 503 | From Maryland | Registered: Oct 2007
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It's great to see that you are open to learning more about Lyme disease for the sake of your patients, we need more doctors like you.
Thank you so much for making this effort---That alone is about 99% more than most doctors are willing to do.
To be honest, I thought the whole "LLMD" thing was very bizarre at first too, I remember searching online--going to websites (hospital websites) and looking under specialties and thinking "why is LLMD" not listed here?! I than remember googling "LLMD"--and it went to pages and pages about the controversy in the medical community--between the IDSA and ILADS. At first, as someone whose family has a medical background, I didn't give it much credence.
I decided to turn to one of the docs in my family--my uncle. As an older doctor, who has been around a while--and has worked his whole life in the Lyme endemic area of New York, he knew a bit about the disease already. He knew in his own practice that sometimes patients didn't get well, he would diagnose them with Post Lyme Fibro., and treat the symptoms using pain medications, or anti-inflammatory's, anti-depressants--whatever got the patient up and out of bed.--that seemed to do the trick. But, he always did wonder if just suppressing the symptoms was really the answer, especially in younger patients who had their whole lives ahead of them. He would never known what the outcome would be, as many doctors never do.
To make a long story short, after I was tested for Lyme disease and was positive for both Lyme and Babesiosis--my whole (medical) family became interested in the background of this disease, especially because many members of my family have been sick for years, decades even---diagnosed with CFS, Fibro, Two have MS.-We all live within 10 miles from each other. It was worth looking into to say the least. However, only one more of my family member's tested positive. The rest, though they had/have all of the symptoms, had negative tests.
My (medical) family began than to look into the validity of the testing. ....To our surprise, the testing was not very accurate, and could miss about 20-30% of actual Lyme disease cases.
Also to my (now retired) Uncle's surprise, many studies citing the persistence of the Lyme spirochete existed. He felt horrible. Here he was, retired, 75 years old, and he said he wished he could track down every patient he had treated for Lyme disease, yet when the "magic 28" days of treatment was up, he put them on a pain killer, or anti-depressant..when they really needed more treatment.
All of us with symptoms, positive or negative serolgy aside, have been treated for Lyme disease over the past 3 years. We have all had marked improvements! Amazingly, my sister-in-law with "MS" (who tested negative, even at Igenex) has improved the most. She leads a normal life about 85% of the time now, which is amazing compared to her former like, where she was "normal" about 30% of the time.
I myself am in a wheelchair 25% of the time due to severe dysautonomia and neurally mediated syncope.
My 4 year old daughter has suffered too. She is on IV antibiotics right now, and getting better each day.
And yes, we were/are all being treated by "LLMD's".
I saved on my computer over 100 studies that in some shape or form proved the persistance of Lyme, or inaccurate testing, if you would like a copy, don't hesitate to ask.
Again, thank you for making the effort, I am positive it will benefit your patients now and in the future years to come.
God bless you!
Posts: 371 | From CT | Registered: Jun 2008
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Two comments....
1.) The "Lyme-literate medical doctor" (LLMD) thing came from patients posting online, seeking a shorthand term for a healthcare professional who understands that not all Lyme is a simple course of short-term antibiotics. Not all LLMDs are ILADS members, and not all IDSA members are "ducks" (quacks).
2.) It occurred to me that "Maryland" may not be a doctor. In cyberspace, it is often hard to tell who anybody is for sure. But when posting, I try to keep in mind the lurkers who never post, but read the threads and have many of the same questions.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wouldn't the doc have posted back after all these thoughtful replies?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
troll
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
If you want facts, visit ilads.org, and read the treatment guidelines. The specific answer to your questions can be found in the ILADS guidelines.
Warning Note: False positives are rare with Western Blots, but false negatives are quite common based on studies found on pubmed.gov.
Igenex laboratory is CLIA-certified, inspected by the Department of Health and Human Services for Medicare testing. They are also licensed in those states with special requirements (California, Florida, Maryland, New York, and Pennsylvania). All other states accept CMS licensure, which they also carry.
As a specialty lab, they're at the forefront of accuracy in tick-born illness, and while that's the case, there is still much left to be learned in regards to how to perform better tests on an illness which physicians can't even agree over whether it exists.
They are the best at what they do, but they aren't perfect, and that is why people use their laboratory, but it's also why, when a test is negative from Igenex, that people continue treating the infection in spite of a negative result, especially if they're responding to treatment, or... enough other indicators or supportive finding are available to underpin the diagnosis.
-------------------- 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.
posted
Thank you all very much for your replies. I welcome all the advice you give. As I stated early in my first post, I think that this board is a well educated group, and one of my patients suggested that I visit it.
I went to a very well known medical school and a very prestigous residency program at a well known hospital. I say this not to brag, but to set my next statement in context. I never - not a single time - ever had any education on lyme disease. I learned about every weird disease out there - some of which have only afflicted a few patients worldwide - but not lyme.
I think, in retrospect, that this was a failing of my program. They taught us to be great clinicians, but it was a different type of education - one geared more for tertiary care than primary care.
I don't think that we know all the answers in medicine. I am learning more and more every day. I learn from every patient I see in the office and would never claim that the 5 total minutes of education I had on lyme disease (which was probably a single slide in medical school) makes my knowledge superior to yours simply because I have a "MD" after my name.
So, thank you for your replies. I simply don't have the time to "shadow" a "LLMD" nor am I even aware of any in my area.
On to my next question...my patient told me she would like IV Abx (which I am amenable to) but wants to "pulse" them - 4 days on and 3 days off. This makes no medical sense to me and strikes me as dangerous. I guess the argument is "it kills the Bb during the 4 days and then you get 3 days to recover, but that isn't enough time for the bacteria to recover". This scares me. While it may be true that it takes longer for the Bb to recover given its long incubation time, this is not the case for other bacteria that the abx are killing (as no antibiotic is specific for a single bacteria). Thus, this pattern would seem to me to select for resistant bacteria of many species - and put the person at potential harm down the road.
I can not count how many resistant bacteria are in the ICU, and how easily they are spread from person to person. Things like MRSA, VRE, ESBL-Kleb. Pulsing antibiotics simply seems like bad medicine to me. (So, to answer the story I said I would initiate the paperwork for IV abx, but I am standing strong on NOT pulsing).
Not to sound like the proverbial broken record; however, your question and concerns regarding pulsing IV ABX in your patient can be answered from an ILADS medical professional member.
ILADS is headquartered in Bethesda, Maryland. There are quite a number of Lyme doctors in Maryland. Simply call ILADS and they can put you in touch with some of the membership in your State to consult with.
The Lyme doctors are usually very generous with their knowledge; however, I do know that the good ones are busier then a one-armed wallpaper hanger.
Effective treatment usually requires multi-faceted and layered forms of support to the patient in order to offset potential side effects, manage the inevitable Herxheimer effect and to increase efficacy of a treatment protocol.
In particular, treating advanced, disseminated Lyme is a real balancing act in every way imaginable. As a patient, I can tell you that I would rather have aggressive treatment then be left with a catastrophic and permanently disabling and/or fatal disease like Lyme.
Fuzzy
p.s. I'm having a very difficult time believing that you are a medical doctor. Apologies if this is insulting, but I felt the need to acknowledge the reservation.
Posts: 503 | From Maryland | Registered: Oct 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
It is my understanding that a diagnosis of lyme disease is extremely difficult via current testing and as such doctors must rely on the symptoms presented by patients.
If they present a large number of the following symptoms, lyme disease is a real possibility:
Lyme symptoms:
1. Joint/muscle pain 2. Swelling in feet, balls of feet, toes 3. Ankle pain, Achilles 4. Burning sensations, anywhere 5. Unexplained fevers, sweats (esp. night), chills, cold hands and feet 6. Unexplained weight change (gain or loss) 7. Unexplained hair loss 8. Fatigue, tiredness (awakening and feeling exhausted) 9. Swollen glands/sore throats 10. Testicular pain, pelvic pain 11. Breast tenderness 12. PMS problems 13. Sexual dysfunction, loss of libido 14. Irritable bladder or bladder dysfunction, kidney stones 15. Upset stomach 16. Constipation, diarrhea 17. Chest pain or rib soreness 18. Shortness of breath, cough 19. Heart palpitations, pulse skips, heart block, murmur 20. Stiffness of joints (not just knees), neck or back 21. Muscle pain or cramps 22. Twitching of face or other muscles (tremors) 23. Bell's palsy 24. Headaches, migraines 25. Neck creaks or cracks, neck stiffness 26. Tingling, numbness, burning or stabbing sensations 27. Eyes: vision is double, blurry, pain, increased floaters, eyes cross 28. Ears: buzzing, ringing, ear pain, ``cotton feeling'' in ears 29. Lightheadedness, wooziness, difficulty walking (walk into walls, doorways) 30. Confusion, difficulty thinking 31. Difficulty with concentration or reading 32. Disorientation, getting lost, going to wrong places 33. Difficulty with speech (can't think of the right word), slurring, stuttering, saying the wrong word 34. Mood swings, irritability, depression 35. Disturbed sleep - too much, too little, insomnia 36. Exaggerated symptoms or worse hangover from alcohol 37. Heart murmur or valve prolapse 38. Hypoglycemia 39. Sinus infections 40. Dental problems (pain in gums), TMJ 41. Various cysts, carpal tunnel
And more...
Once again, if multiple symptoms are presented, we must consider lyme.
And above all do NOT prescribe steroids which elevate glucose levels!!!
Now...I'm likely to get only one shot at this, so I'm taking my best shot off the top of my head without linking all of the following (which I CAN do)
When Bb leaves the stomach of the tick and passes thru the tick's saliva, it picks up a protein (SALP 15) that binds to CD4 T cells.
This begins the disaster...because those cells could have prevented infection.
It is likely the most virulent strains of Bb are the ones that have a gene for alkaline phosphatase (9 strains do).
This pathogen is PFK dependent. It is LOWERING that enzyme which triggers insulin. (Il 1B tries to keep this under control.)
But when blood sugar levels drop, the body will trigger gluconeogenesis to provide the ongoing supply of glucose we need. Along with this pathway...come the amino acids to make Bb's multiple cell walls.
This pathogen is using Mn to replicate.
This pathogen, like HIV, has zinc fingers. Cysteine and histidine bound by zinc.
This pathogen needs choline. It can NOT breakdown acetylcholine, instead it counts on us to do that.
This pathogen needs sodium and it impacts the Na-Ca pump. Na in, Ca out.
This pathogen uses CO2...called CO2 fixation to obtain its methyl groups and ultimately to make Na-ATPase which -> ATP-> ADP.
This pathogen follows the cholesterol pathway (as does cholera).
This pathogen has a gene for transferrin...Fe transport. It does NOT use iron to replicate.
But perhaps the worse thing about Bb is the fact that it has a PKC inhibitor which looks to be PKCD...protein kinase C delta.
It is impacting tyrosine kinase. Since this is so vital, our system tries to figure out how to activate PKCD...via E2 for one.
This pathogen is triggering COX-2 -> PGE-2 -> HO-2.
When instead, this pathway would be beneficial:
COX-1-> PGE-1 -> HO-1 -> CO (though Bb has a gene to deal with that), Fe (once again, transferrin gene), and ***biliverdin.**
Jumping ahead...biliverdin is green (I'm talking about wavelengths)...which absorbs red and makes yellow. The yellow wavelength closes the Na channels.
Bb has a protein that locks onto this combination (cytochrome C + NO).
We need to oxidize cytochrome C.
Cytochrome C causes cell death.
IF we oxidize cytochrome C, we not only save the cell (power up the mitochondria...i.e. ADP-> ATP) but at the same time, destroy the infection within the cell.
We CAN repair the DNA damage once the infection is gone.
Like many pathogens, Bb makes a biofilm. Individually the pathogens don't stand a chance, but they make slime films using proteins + sialic acid. Once a quorum is reached, they plan their attack. This is cutting edge researh from Harvard.
From the get-go...Bb's PKCD inhibitor impacts the CD3 d cells...
B cells are triggered when the cell nucleus recognizes a pathogen. NFkB is signalled. This triggers the release of B cells, some of which go off to the thymus to mature...serotonin is released to trigger the development of T cells.
The first ones are gamma-delta T cells. Then alpha-beta. It is the gamma-delta T cells...esp. CD3d that is impacted.
These cells do not then send the right signals to the next group, CD4.
(HIV is worse...that virus actually infects the CD4 T cells.)
The cells infected themselves do not mature properly.
They will eventually become HeLa cells...immortal. There will be DNA damage (undermethylated). The mitochondria will suffer and they will replicate out of control. They are glucose dependent. Angiogenesis will kick in...
At the OUTSET of lyme, the % drop of Mg is astounding...a 33% drop...this comes from a cancer hospital in Romania. Why? Mg is needed to make all of our enzymes...esp. the one to inactivate HMG Co A reductase and halt cholesterol production...for starters.
AND...there is a U.S. patent, titled: Magnesium for autoimmune by a Dr. Valetta in Italy. He used Mg pyrophosphate and sub (lingual B6) to cure RA, ulcerative colitis and cancer in months.
How?
It is that combination...Mg pyrophosphate...
OR....
Far infrared at the 880nM wavelength heats the cells and causes the release of COX-1 -> PGE-1 -> HO-1 (which is a heat shock protein).
This wavelength transfers 2 photons (energy) and as such -> ADP-> ATP and with more ATP, Mg enters the cell.
(Delta = triangle shape or PPi...)
The 880nM wavelength is now used to accurately measure the amt. of INTRACELLULAR Mg. Once again...this is very recent research.
This is why lyme patients are going to Germany for treatments.
Unfortunately lyme patients are also forced to go underground to use another treatment called Rife which uses frequencies sent thru an argon light to destroy pathogens. This method takes about 2 years, but has worked. DOCTOR Royal Rife was curing cancer in the 1940s in San Francisco.
Unfortunately lyme patients have had to seek other routes as well...extremely dangerous high levels of an ARB drug. They too work, but definitely are not without tremendous risks (kidney).
Unfortunately, lyme patients a few years ago, went to Italy to try a treatment called ICHT = intracellular hypothermia (speed up glycolysis) using DNP (in a class with cyanide) provided by a doctor who had used this in the U.S. for fast weight loss. It cost those patients $20,000.00.
That doctor had lost his license in the U.S.
We don't speed up glycolysis to that degree without depleting the electrolytes (further) and as a result someone died.
Many lyme patients have tried HBOT. It is not approved to treat lyme and it has not, to my knowledge, CURED this disease. It is very expensive...out of pocket.
That is how desperate lyme patients are...which is understandable given the tremendous pain and suffering they are going thru.
Fortunately far infrared devices that have the 880nM wavelength ARE available here as a physical therapy device and not a medical device. They DO indeed speed healing. This has been PROVEN.
Much of this research is the result of NASA research because our astronauts return to earth with low PFK levels and are anemic. Plants do not grow in zero gravity. Injuries heal a lot slower. But the far infrared wavelength makes a huge difference. In addition...our astronauts make use of whole body vibration to inactivate NFkB...which is key.
My sister was misdiagnosed and was given steroids. When all antibiotics failed her, I wanted to know why...and so began 8 years of nonstop research trying hard to figure out this horrible pathogen.
She almost lost her eyesight (uveitis). She has had both knees replaced. Her hands are horribly crippled and her feet are very painful. Her legs are very edematous. She has lost most of her hair.
She has now been dx'd "autoimmune". Humira helped to a degree for awhile, but did not stop the destruction.
The inflammatory cytokines are triggering MMPs...which are a double edged sword. Yes, they bind minerals Bb needs, but they also destroy collagen and elastin.
I have over 3000MS word files...piece by piece...and with a LOT of help from others on this board who provided information and clues.
We are NOT dumb. We KNOW our own bodies and we know when something is horribly wrong.
I am a former OB RN...and I am well aware of the misinformation in med schools currently!
P.S. Just take a look (it is a list)of the current gov. trials (recruiting patients) to evaluate far infrared:
Oops. I forgot to mention that some people have a short gene for HO-1 and they make MORE HO-1. They have less athrosclerosis, less risk for diabetes and less risk of cancer. That means those with the longer gene are gonna have a harder time fighting lyme.
[ 09. July 2008, 08:13 PM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Thank you for visiting this website. Thank you for not being arrogant and for being willing to keep an open mind in spite of your training. I have an advanced degree (Ph.D.) and understand how difficult it can be to consider ideas that are not mainstream, "do not make sense" and do not fit the current zeitgeist.
Please keep in mind the old saying in medical school: "If you know syphillis, you know medicine."
A more contemporary idea would be "If you know Lyme, you know medicine." This idea is not my own, but from a Washington Top 50 doctor.
Remember that historically there have been many ideas in medicine that "make no sense" given the state of the science at the time (i.e., early syphilis debates) but with additional data become accepted and well understood ideas that now "make sense."
In addition, there are numerous examples in the medical literature in which prestigious journals have published articles that turn out to be completely false. An example would be articles published in JAMA and the NEJM in which researchers made their careers providing evidence that there was no possible way for HIV to be the cause of AIDS.
Again, thank you for investigating this issue for yourself. Good luck in making your decision regarding what you believe.
Posts: 129 | From Virginia | Registered: Feb 2008
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posted
I've never been one to like the idea of pulsing either.
One herb routinely used for babesia is pulsed due to the way it works ... after several days it's effectiveness goes down, so you take it a few days on, then a few days off (artemisia annua). However, you do not take this herb alone, it's an adjunct therapy.
Some LLMD's do pulse meds due to the slow replication rate of the bacteria.
Perhaps your patient is afraid of Herxheimer Reactions? They can be really, really difficult. My first herx was so bad that I could not walk from my bed to the bathroom without help. It is a normal reaction. I have skipped doses here and there when the herxing was bad. Other times I have taken less than prescribed due to herxing. These kind of accommodations have to be made.
Thank you for taking the time to learn more about Lyme Disease.
Have you seen the Dr. B guidelines for diagnosis and treatment of Lyme Disease? It's about 30 pages available on www.ilads.org. It contains a LOT of valuable information.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I have never pulsed an antibiotic, simply because my LLMD does not believe in that tactic--same reasons you stated.
I know that you do not have time to shadow an LLMD, but since you do seem sincere in wanting to learn about this, perhaps you would be willing to either:
1) Talk to an LLMD on the phone (there are many in Maryland/DC/Virginia you can speak with)
posted
I am new to this site but have found this one thread to be the most informative yet, with so many resources and links. I for one appreciate the question and the avid responses. I do agree with the MD regarding the comment about spending so much money on poor testing. If all the clinical symptoms are present why give igenex such an outrageous fee for a test that should be covered by insurance. I am also offended by LLMD that want to charge $500-700 on your credit card just to make a first appointment. Anyway, thanks everyone for all the great info.
Posts: 21 | From california | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Dr. Kenneth Singleton's Book: "The Lyme Disease Solution" is also a good intro and reference.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
My LLMD has not pulsed ABX and I believe that many don't. I can appreciate your point regarding the other pathogens. Thank you for sharing this concern.
I wonder if those pulsing IV are also taking oral ABX on the "off" days. I seem to believe that I have heard of some doing this.
I have late neuroborreliosis and I believe that I have starting to Herx today. Please excuse me if I am remembering the "pulsing" wrong, I just can't seem to pull the details out of memory right now and I haven't personally investigated that approach.
I would hope that someone else might be able to speak as to how the resistance of other bacteria is avoided when pulsing.
I would have to think that your patient would be glad to have Tx that would address their disease. With a concern like that, I wouldn't really expect my doctor to agree to pulse my ceftriaxone unless I could provide a valid argument to address his concern.
I realize that it can be very hard for those with Neuroborreliosis to try to support their arguments for specific Tx that they feel might work in their particular case. It takes TREMENDOUS effort to try to pull together a fully supportive presentation and deliver it in the time frame that a PCP typically spends with a patient.
I do realize that the insurance companies try to see to it that doctors can't really spend more than 15 minutes per patient. It can be such a nightmare for someone who is struggling with slowed-processing, memory issues & word-finding difficulties to try to communicate effectively in such a brief time.
There is a thread pinned to the top of this board that discusses Western Blot Testing that may address your questions in your earlier post.
I just did a quick search (search feature located up top under "post new topic") using only the word "pulse" & found a few interesting discussions on the topic. I bumped the threads up for you as I am just too tired to link them here.
If you just post questions, as you have them, as "new topics", you will likely get more answers. I don't think that people will keep coming back to this thread to see what questions you have. Many would likely be willing to share their knowledge when they see a question they think they can help with (as long as you are not cruel, demeaning or antagonistic with your words, as then they will assume that you are one of the trolls who come here to "toy" with sick people because in their own sickness they think that's a fun way to pass time (sad, but true)).
Thank you for caring enough to try to help your patient.
Best wishes, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Keebler said:
quote: Dr. Kenneth Singleton's Book: "The Lyme Disease Solution" is also a good intro and reference.
through Amazon
Yes and Dr. S is in MD.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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daise
Unregistered
posted
Again:
Go to www.ilads.org and on the left menu click "Treatment Guidelines." That brings you to two documents:
1.) ILADS Guidelines--well footnoted.
2.) Dr. B's guidelines for 2005--not to be missed.
posted
Pulsing is sometimes done with IV rocephin to try and avoid the gallbladder sludging, which is a known side effect. This is thought to work because of the slow replication time of this spirochete.
The problem with newbies attempting this kind of treatment is that they will not know all the ifs, ands, and buts that go with it. Like an Rx for actigall with rocephin to try to avoid the gallbladder problem. Some people have lost gallbladders from rocephin treatment.
Then there is the herxheimer effect, which newbies will not understand. This can result in therapy stopping, assuming an allergy. Read up on herxheimer reactions, known also in syphillis and relapsing fever. Managing a herx can be challenging.
Another thing is that if patients have a high germ load, hitting it with a full dose of IV might cause a really serious herx, ER type reaction. This is why some doctors will start entirely untreated patients with lower doses and ramping up. If your patient has had oral abx previously for her lyme, then that might have knocked down the germ load enough to go on to IV with less trepidation.
These are all reasons to read the treatment guidelines suggested by others. Treating lyme and coinfections is not for the faint of heart.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
This link is to a presentation at a recent Lyme conference. For Newbies and Oldies alike it is a very good summary of testing and treatment options.
posted
I want to quickly address some of the negative posts that my questions have generated.
First, I do not feel the need to "prove" to anyone that I am a medical physician anymore than I would ask any of you to "prove" anything you write. But, if anyone really really cares, pm me and I'll reply from my medical address, which should quell any doubts.
That being said, I also want to quickly give you a sense of what medicine is truly like...the medicine that patients don't see. And, though I don't share these sentiments, this is what I saw in medical and residency on a daily basis. There is no patient any (with minimal exceptions) physician wants to see less than a CFS or Fibromyalgia patient. I would probably say the same applies to chronic lyme. I don't think any physician would say this to anyone besides another physician, but this is a lesson that I learned very clearly in residency. Also, as a general rule, many physicians, especially the older generation hate the fact that the internet has empowered patients to become more educated about their disease and ask more insightful questions. It changes the medical dynamic from that of a paternal role to one more of a colleague, and many physicians are not able to deal with this.
Where I trained (at a major academic center) there is only one type of physician that is respected - one who works for another academic center. It seems like all LLMDs are not affiliated with major hospitals, rather being in private practice. Even worse for the medical community these physicians (to a large part) don't take insurance. I would venture to argue that a large number of doctors view their actions not of benevolence but rather of greed. Selling fish-oil to desperate patients who want nothing more than a doctor who will listen to them and validate their diagnosis. Seems to me like a lot of LLMDs do this and provide validation - but at a huge financial cost to the patient. They are lumped into the same boat of disrespect reserved for medi-spa doctors.
So, I hope that explains a bit more of the lessons I was taught throughout my training. I hope that nothing I have said is taken as disrespectful, because this was not my intention. I can imagine no greater horror than having a disease like this and repetively running into physicians who treat these patients like those with whom I trained.
If anyone wants to read more about the "behind the scene medicine" I would recommend reading House of God, which is a book we were given our first day of medical school.
Posts: 7 | From MD | Registered: Jul 2008
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daise
Unregistered
posted
Ditzy MD:
I've had enough of you.
If you're a doctor, then you are a typical duck. Quack!
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
MdMD has not read the info provided, has not done any research on the role of omegas, studies of nutritional deficiencies in borreliosis, biochemistry of the organism,
or any tick borne diseases, has not gone to any conferences to discuss his concerns with his medical peers, and seeks out help from patients, and now disparages llmds, not all of whom recommend or sell those omegas.
Draws conclusions without evidence or research.
quote: Also, as a general rule, many physicians, especially the older generation hate the fact that the internet has empowered patients to become more educated about their disease and ask more insightful questions.
It changes the medical dynamic from that of a paternal role to one more of a colleague, and many physicians are not able to deal with this.
So this becomes the doctors' personal problem, not the patients'.
Diagnosis: Possible deficits in critical thinking skills, repetitive thoughts, rigid and inflexible thinking, inability to adapt to changes, lack of sensitivity, and may benefit from counseling. ($300.00, thank you, pay at at the front desk, since I don't accept insurance)
Northstar
Addendum:If you want to read more about the "behind the scene lyme and tick borne disease experience" I would recommend reading "Cure Unknown", which is a book I wish was published when I first became ill, and I wish I had read prior to all the useless visits and insults from gp's and other specialists.
Our education runs a little backwards: we experience first, then learn. It is the school of hard knocks.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
To those who have attacked me personally and called me offensive names such as "troll" and those who have cursed me and said much worse via private message, I wish you nothing but the best and have said a prayer that you feel better and continue to improve.
I came on this board to get some insight. I have read numerous articles over the past several days and know far more about lyme disease than I had previously.
I try to treat my patients with care and compassion. I recently spent several days learning about CFS, and communicated with Dr. Montoya from Stanford. I started a patient of mine on Valcyte (at her request) and was as disappointed as she was when the randomized double blinded trial he ran failed to show a significant improvement.
It is easy to criticize others, and I have been hurt by some of the private messages I have received. However, I applaud those of you who have graciously taken your time to provide me with data from studies and trials. Thank you.
Posts: 7 | From MD | Registered: Jul 2008
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posted
I would treat your CFS patient with antibiotics. I would bet my life it was Lyme and or co-infections. Same goes for any Fibro patient.
Posts: 81 | From Nashville Tennessee | Registered: Oct 2006
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posted
I understand what you were trying to say when you said that you wanted to help the people on this site "understand what medicine was truly like... the medicine patients don't see."
Unfortunately, many of the people on this site are already excruciatingly aware of the sentiments you mentioned. They did not need you to tell them that this is the way many, if not most, physicians feel. Having worked in an academic medical setting, I realize the truth of your words in general; most of the people on this site have experienced them first hand. Obviously, I understand that you did not mean it applied to every single physician.
Truth be told, who would want to treat fibromyalgia, CFS or other syndromes without a known cause or cure? Being presented with a patient like this brings to light the limitations of medicine and probably makes some physicians feel inadequate. As a result, many respond by believing that "there must not really be anything wrong with this person... I learned all about disease, etc.. in medical school and THIS ISN'T THE WAY IT WORKS. THIS DOESN'T MAKE SENSE."
Although it is true that many ILADS doctors are solely in private practice and do not accept insurance, it is not universal. I know very few ILADS doctors at all; the one I do know is an associate professor with a major academic center in the region, accepts insurance, and publishes in peer-reviewed journals. He has colleagues at prestigious institutions such as Johns Hopkins who quietly applaud what he does but say, "Don't include me in anything; my institution is too conservative."
Posts: 129 | From Virginia | Registered: Feb 2008
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posted
Thank you for explaining how doctors look at other doctors, that is something we could not know without being told. I do not understand why people aren't taking you as genuine, other than perhaps they are misreading what you are saying.
It doesn't help that on occasion we are harassed on this board. I don't take your posts to be that way at all.
It is a difficult disease and I had no medical professional believe me or treat me with respect until my LLMD. I had 45 out of 75 symptoms and was bedridden. I also had a CDC positive test. I STILL got a diagnosis of Somatization Disorder.
Though I understand the peer pressure you are explaining, I think it's horrendous. Those are the doctors who must be in it for the money as I don't see any compassion on their part.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Why can't someone who has questions ask them without being attacked? Whether the individual is a "troll" (a very juvenile term), or a legitimate doctor (I do believe they are), why do some board members feel they have the right to harass others.
Daise's comments were not only rude, but demeaning as well. I DO NOT believe that the Maryland MD was trying to do any harm. I believe he or she provides us with an insight that only doctors are privy too. Just because he is asking questions that most of us have asked ourselves at one time or another, doesn't mean they need to be demoralized. What about the old addage "If you want respect, you need to give it." Well, that certainly is not the case here.
This board has such great potential and could be a wonderful and informative site, which I am sure we all agree that is what lyme sufferers need. But, how ignorance and hostility take over on posts which don't always agree with the general mindset is proposterous.
This will do nothing to prove credibility for those who are suffering with this awful disease.
Posts: 157 | From connecticut | Registered: Feb 2007
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daise
Unregistered
posted
Tonysgirl:
quote: You wrote:
Why can't someone who has questions ask them without being attacked? Whether the individual is a "troll" (a very juvenile term), or a legitimate doctor (I do believe they are), why do some board members feel they have the right to harass others.
Daise's comments were not only rude, but demeaning as well. I DO NOT believe that the Maryland MD was trying to do any harm. I believe he or she provides us with an insight that only doctors are privy too. Just because he is asking questions that most of us have asked ourselves at one time or another, doesn't mean they need to be demoralized. What about the old addage "If you want respect, you need to give it." Well, that certainly is not the case here.
This board has such great potential and could be a wonderful and informative site, which I am sure we all agree that is what lyme sufferers need. But, how ignorance and hostility take over on posts which don't always agree with the general mindset is proposterous.
This will do nothing to prove credibility for those
Because he or she is a troll--look at the inconsistencies. Look at the slams. Look at the IDSA-type garbage. Quack!
posted
A GP in the UK is at the very bottom of the pecking order.A Private Consultant of any illness is very highly regarded , is way above them and would not be belittled , whatever they cost , as you have done.
If you are at the bottom of the pack, then this remark would be out of order , a consultant is superior to a GP but THEY KNOW that.
Posts: 153 | From England | Registered: Jun 2008
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posted
Daise, I don't think they're slams .... I think he seems to be genuinely trying to learn about Lyme and is coming from knowing little about it ... only the info on maybe one slide in a med school class.
We don't have tone and facial expression here. You can't judge him to be a "troll" from what he's written. He sure seems genuine to me .... even if he weren't, I would want to error on the side of helping.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
This will likely be my final post, as this had degraded into a session of name-calling, which was not my orignal intention and arguing back and forth is simply a waste of time.
I came to this site to get not only some medical information, but also a sense of the community. After reading, searching the literature, and discussion with some well educated posters (who appear to the the majority), I have decided my beliefs that will guide my practice.
I am not asking you to agree with everything, nor do I expect you to do so. Each person is entitled to their opinion, and others need to respect that. With that in mind, these are my personal beliefs.
1) I believe in the existence of acute lyme and it's constellation of symptoms. I believe that in the majority of patients, early lyme can be effectively treated with a limited course of oral antibiotics.
2) I believe in the existence of chronic lyme that may develop in a subset of patients who were caught early, but failed treatment (wrong med, wrong duration, wrong dose...etc). I also believe in the existence of chronic lyme in patients who were never treated.
3) I believe that our current laboratory tests are of limited value in the diagnosis of lyme disease, and believe the diagnosis is a clinical one rather than one based purely on lab studies.
4) I believe that, given #3, spending singificant out-of-pocket money for "boutique" testing is irrational if it will not change the treatment plan (i.e. a decision to treat has already been made) with the possible exception of it serving as a requisite for insurance coverage.
5) I have always believed that CFS is triggered by an infectious etiology. I have suspected, and still believe, that it is more likely a virus, but am willing to accept the plausibility of lyme disease as a trigger. Ultimately, I believe that multiple viruses +/- lyme disease (or co-infections) initiate a cascade that is compounded by our immune response to the pathogen.
6) I remain uncertain whether long term symptoms can be attributed to ongoing infection vs. a post-lyme (or alternatively CFS) inflmatory syndrome. I am even less certain whether it would be adviseable to treat these patients with long term antibiotics, which are not without the potential for serious risk. I admit that some patients with chronic symptoms do seem to improve with long term antibiotics, but whether this is do to killing of pathogens, the placebo effect, length of time (i.e. it's not the 12 months of antibiotics that led to the improvement but simply the fact that 12 months have passed), or some of the well known anti-inflamatory or neuromodulating effects of antibiotics is unknown. Despite my uncertainty, I would be willing to try a patient with these symptoms on antibiotics if he/she wanted to give them a try.
7) I believe that chronic disease is a horrible cross to bear. I think it is even worse to feel poorly and search for answers and be told "it is all in your head." I think that it is normal to be self-defensive and reluctant to talk openly for fear of judgement.
8) I believe that our current understanding of chronic disease is limited. I believe that the medical community, with a few exceptions, has not developed a treatment model to effectively care for patients with chronic disease and that a large number of physicians do not treat patients with this constellation of symptoms in an appropriate manner. Whatever a physicians personal beliefs on the existence/treatment plan for seronegative long-term lyme disease, patients still need to be treated with a level of respect that is too often lacking in modern medicine.
9) I believe support groups, whether online or in person provide valuable services, validation of symptoms, and are invaluable in treatment.
10) I believe some individuals and companies use the fear and desperation that goes hand in hand with chronic disease to generate profits for themselves by selling treatments that ultiamtely amount to little more than fish-oil by marketing them to the CFS and lyme disease populations.
11) I believe that some people on this board attribute every symptom under the sun to lyme disease, and ignore other more likely causes (i.e. the burning sensation in your chest is attributed to lyme disease and the possibility of an unrelated cause like acid reflux is ignored).
12) I am concerned that people believe that feeling worse after starting a new medication is ALWAYS a "herx" and that this is always a good thing. I am concerned that people are ignoring well documented medication side effects and other adverse reactions, and by doing so putting themselves at potential risk.
Well. I think that is all I have to say. To conclude, thank you to the well educated, well meaning people I have met.
To those who have been less welcoming, I have told myself that your behavior is a reflection more of your illness and the treatment you have received from the medical community than a direct personal attack on myself.
Thank you all. God bless and take care. I wish you success in your road to full recovery.
Posts: 7 | From MD | Registered: Jul 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Just a note with regard to LLMDs not accepting insurance:
I realize that insurance companies will tangle doctors up in so much red tape, trying to get "approvals" for patient treatment and payment for services outside of the IDSA guidelines (who's authors are guilty of fostering and perpetuating the attitudes of which you speak and are now in the process of being rebuked), that they would make it impossible for those specializing in Tick-borne Disease to keep up with current studies, do research AND effectively treat complex patient presentations.
I am glad you are choosing to honor your profession by trying to place the needs of your patient above the dogma that was taught to you. I think that it speaks volumes for your character that you are willing to examine the contrary evidence and think for yourself.
I think that many of those doctors don't realize that the emotional harm they inflict on those who have had unrecognized Lyme & co-infections or under-treated disease actually counts as "harm". They do the medical profession a grave disservice with their attitudes.
It's very sad indeed.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Thank you Maryland MD for giving us the time and opportunity to explain our circumstances further. Please do not feel "put off" by what a few rogue individuals have posted. I do believe quite a few of us appreciate your interest.
Thanks again.
Posts: 157 | From connecticut | Registered: Feb 2007
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posted
You are right, it's not always a herx, sometimes it's a side effect. When talking with my LLMD we try to determine which it is. Generally a herx is pretty clear ... it's a worsening of Lyme symptoms. Meds generally have pretty documented side effects. At least in my own case, the herxes have been pretty clear.
As far as time passing, that's an interesting perspective. I have tried to get off meds and quickly declined. In my case, I was undiagnosed and untreated for 34 years. I had symptoms come and go over that time.
Finally I caught another illness, got re-bitten by another tick (got babesia from it), and was under a lot of stress. This pushed me over the edge and I became VERY ill.
I think when it's this established and there are this many coinfections (borrelia, bartonella, babesia) and other illnesses (heavy metal toxicity- lead, and parasites), it just takes a long time to heal. Same as you would with syphilis, the cousin of Lyme Disease.
You may even learn more about Lyme by studying syphilis. They are very similar in the progression of illness and the symptoms.
People here may blame everything on Lyme, but the doctor's don't ... my LLMD does look for what might be causing a symptom. He did a very thorough differential diagnosis.
Actually, I had an endoscopy that showed acid reflux ... and this acid reflux has cleared with treating specifically the bartonella and the parasites.
Thanks for sharing what you've learned over the past couple days.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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"Because he or she is a troll--look at the inconsistencies. Look at the slams. Look at the IDSA-type garbage. Quack!
Don't post when you haven't read his posts. "
I am embarrassed by the way this person has been treated here. If you think he/she is a troll, how about you just scroll on by? They are NOT hurting anyone.
I cannot see any malevolent motives behind this person's posts. It is a complete waste of time to accuse and interrogate the person.
We have no right to sit here on this board and degrade and whine about "ducks", then when one MIGHT come here for information, blast them outta here based on preconcieved notions that they MUST be the "enemy."
This is just shameful. Do people feel like they "scored" when they chase a possible "troll" away? Is there some secret society that awards you a trophy for doing so?
Whoever this person is, they have done NOTHING that would harm anyone.
Grow up.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
while it may be true that MarylandMD has "done no harm" directly, we do have to be ever vigilant of people who may, through arrogance or well-meaning misunderstanding,
further propagate misinformation about Lyme Disease and coinfections.
This particular poster started a thread on the premise of "discussing" our misguided understanding about the need for testing. She / he then ended the discussion by saying
that we had hurt her on a personal level -- but you will note that NONE of her opinions changed from the beginning of her post to the end, despite many people's generous efforts to
provide educational material. She summed up her sentiments by stating [paragraph breaks my own -- she did not observe suggestions to break up the text]:
"I remain uncertain whether long term symptoms can be attributed to ongoing infection vs. a post-lyme (or alternatively CFS) inflmatory syndrome. I am even less certain whether it
would be adviseable to treat these patients with long term antibiotics, which are not without the potential for serious risk. I admit that some
patients with chronic symptoms do seem to improve with long term antibiotics, but whether this is do to killing of pathogens, the placebo effect, length of time (i.e. it's not the 12
months of antibiotics that led to the improvement but simply the fact that 12 months have passed), or some of the well known anti-inflamatory or neuromodulating effects of antibiotics is unknown."
This statement is a RED FLAG -- the suggested reading material was ignored but the IDSA attitude remains.
MarylandMD, I truly do not intend this to be a personal attack; I know what that is like -- for sixteen years I have been berated and ridiculed at the hands of over fifty non-LLMD's.
At first my big ego was pulverized; but out of its ashes were born compassion and humility. Perhaps just saying so means I must ask myself if my ego is getting in the way again. Perhaps you will ask yourself this same question.
Posts: 1173 | From USA | Registered: Nov 2007
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daise
Unregistered
posted
And ... more objected--not just me. But it has to be spelled out further:
AliG, Tails, Tickedoffin NC, Keebler, Fuzzy Slippers, (Northstar? Can't remember,) and Cotton, besides Tincup and Treepatrol and the nasty PM's--by his or her admission.
You never read this thread--yet slammed me! No one else--but me.
Come on!
I know it can be hard to tell where some posters are coming from. But not this one.
He was advised to go to ILADS website several times--yet he did not. That is huge! So he sought medical information ... from us?
He reeled-in some ill patients with Lyme, claiming he wanted information. He would not even go to the ILADS site.
Clearly, in his reversal seen in his last post, he ended up slamming we who come to Lymenet!
And he or she claims to be a doctor!
And some of you STILL fell for it and still don't get it--and slam me. Just me. Even when he or she all but proclaimed in the last post the attitude: Ya, you stupid people with Lyme.
Troll, plain and simple. A troll's work is to harm a blog.
I think this person's intention was to stir up trouble, doctor or not
I followed the whole post and he/she did make several inflammatory remarks along the way.
Regardless, this is a patient support site, not a site for a doctor to come tell us if he/she believes we are sick or not
been there, done that...
BTW - I am not a doctor but worked in several hospital settings prior to my illness very closely with physicians
I have an understanding of what would be considered "appropriate behavior"
and a "doctor" coming to a patient support forum to start a "healthy debate" or whatever maryland md said in their 1st post about the validity of our illness, diagnosis, and treatment
is highly unprofessional and completely inappropriate - if this person wanted to learn more about treating Lyme medically (which I agree would be great)
there are many professional avenues available to pursue this goal - which we freely shared and this person apparently chose not to pursue
additionally, marylandmd did elighten us with the fact that Western medical training leaves something to be desired
I am in complete agreement on that one!
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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I even have to change my gynecologist because of his ridiculing my treatment and telling me my LLMD is a scam. Ends up all the 18 years I've been seeing him he has thought I was a hypochondriac even though I never asked him for any medicine.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. 
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