posted
I went to an llmd today. I have been feeling sick for 18 months on and off. My symptoms have been weakness especially in the legs, weird sunburned sensation on skin, burning/prickling feeling on skin, heart palps (had 24 hr holter and came back fine), numbness/tingling in left foot, hand, and left side of face and mouth (had mri of brain/spine was normal), shortness of breath (had asthma test came back fine). Ive been to 3 neuros, rheumotologist, endrochronologist, dermatologist, pulmonologist, 2 ents, 2 gastros. Ive had many, many tests done everything has always come back fine. I went to back to my pcp following another bout of sickness (skin sensations, weakness, palps, numbness) and a demanded a western blot. The igm came back pos bands 23 & 41. Went to ID doc, he said false pos. He said he was gonna retake bloodwork and only did elisa which came back neg. It drove me crazy i was hoping that the western blot maybe had a chance of coming back neg, and i could just forget about it. So i decided to go to an llmd today. He walked in a didnt even ask my story. He said it was positive so it was positive. I asked him multiple times to retake the wb test and he wouldnt. He did take 5 other tubes of blood though for other stuff. He said my symptoms matched and there were over 300 symptoms. He wouldnt really answer my questions. He said igm meant new infection and i said well ive been sick for 18 months, how can it be new and he didnt answer me. I just felt like he didnt really listen. He gave ne all these supplements to take. He said i would be on doxy for a min of 3 months and that the only way u know ur better is if the symptoms go away. He said i could have had this for 3 or 4 yrs. The ID doc said my igg would be pos then, he said there is no way. Anyway is it normal for doctors not to retest a pos wb? I mean there is a 3% chance of false pos right. I just want be sure before i commit to antibiotics for 3 months. Is that even safe. So confused. Sry abt the long post. Anyone have a story like mine?
Posts: 12 | From Detroit Michigan | Registered: Sep 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Who is your LLMD? PM me. I know all in your area,
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
This sounds right to me. Testing is more likely to produce false negatives than positives. And you should read the explanation of western blot. ELISA very seldom finds anyone positive, so just about worthless.
IgM frequently shows up positive in old cases because the disease cycles. The ID doc is useless.
Unless you really want to fight this diagnosis, go with the meds prescribed. But I would say that if you have had this a long time, three months is just the beginning.
It sounds to me as if you don't want this diagnosis, despite all the docs and testing you have already had. If that is the case, then do nothing and take the consequences. This is a disease that requires total commitment, and I don't think you have it yet.
Please post in paragraphs, not one solid block because it is hard for us to read.
Posts: 8430 | From Not available | Registered: Oct 2000
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up post for easier reading:
I went to an llmd today. I have been feeling sick for 18 months on and off. My symptoms have been weakness especially in the legs, weird sunburned sensation on skin, burning/prickling feeling on skin, heart palps (had 24 hr holter and came back fine), numbness/tingling in left foot, hand, and left side of face and mouth (had mri of brain/spine was normal), shortness of breath (had asthma test came back fine).
Ive been to 3 neuros, rheumotologist, endrochronologist, dermatologist, pulmonologist, 2 ents, 2 gastros. Ive had many, many tests done everything has always come back fine.
I went to back to my pcp following another bout of sickness (skin sensations, weakness, palps, numbness) and a demanded a western blot. The igm came back pos bands 23 & 41.
Went to ID doc, he said false pos. He said he was gonna retake bloodwork and only did elisa which came back neg. It drove me crazy i was hoping that the western blot maybe had a chance of coming back neg, and i could just forget about it.
So i decided to go to an llmd today. He walked in a didnt even ask my story. He said it was positive so it was positive. I asked him multiple times to retake the wb test and he wouldnt. He did take 5 other tubes of blood though for other stuff.
He said my symptoms matched and there were over 300 symptoms. He wouldnt really answer my questions. He said igm meant new infection and i said well ive been sick for 18 months, how can it be new and he didnt answer me. I just felt like he didnt really listen.
He gave ne all these supplements to take. He said i would be on doxy for a min of 3 months and that the only way u know ur better is if the symptoms go away. He said i could have had this for 3 or 4 yrs. The ID doc said my igg would be pos then, he said there is no way.
Anyway is it normal for doctors not to retest a pos wb? I mean there is a 3% chance of false pos right. I just want be sure before i commit to antibiotics for 3 months. Is that even safe. So confused. Sry abt the long post. Anyone have a story like mine?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
i had a positive wb.....then i went to an LLMD that wanted to retest...which we did......and it came back neg per cdc........
fast forward 8 months and this has been used against me for disibility purposes basically saying it proved i didnt have lyme disease.....
all i'm saying is be careful......if your looking for a positivethen retest if you have a postive dont.........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
Florence is right. I'd leave it alone. A positive is a positive.
This part doesn't sound like a good LLMD to me:
"He wouldnt really answer my questions. He said igm meant new infection and i said well ive been sick for 18 months, how can it be new and he didnt answer me. I just felt like he didnt really listen."
Most LLMD's LISTEN to their patients .... and IgM's are more likely to come back positive in chronic Lyme than an IgG.
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." --Dr C of MO.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
A lyme doctor will not re-do a positive Western Blot. There is no need. False positives really are not an issue with lyme disease. The real issue that occurs over and over is false NEGATIVES.
Your story screams lyme disease. I had the sunburn sensation on my skin. I had extreme muscle weakness. I got all normal test results from many docs, many specialists.
It took 10 years of going from doctor to doctor for a doctor to finally think of lyme disease and test me for it.
There are just a few diseases that can cause all of the symptoms you name. Just a few diseases can affect so many bodily systems. So, your lyme doc just cut to the chase.
It sounds like you don't like his style. I suggest you educate yourself about lyme disease, and you will see the wisdom of all that the lyme doc said and did. You should start with the Burrascano lyme disease treatment guidelines found here:
You will see that many supplements are needed by those suffering with lyme disease. You will see that the patient must be tested for many other diseases. It is rare that a person gets just lyme disease from the tick bite (that you never knew you got).
Once the doc finds out all the diseases that you have, he will treat you for each one. Each one requires different meds.
Nearly everyone has lyme, babesiosis, and bartonella as a minimum.
Once you have educated yourself on lyme disease, you may find that you understand more of what is said and done at your next appointment.
It will also help you understand the test results which you should see at the next appt.
Since no one else has given you a diagnosis that explains your symptoms, why not try treating lyme disease and see if it works? You have nothing to lose except your diseases.
There really is no danger in taking long-term antibiotics.
When I got rheumatic fever at age 6, I was put on penicillin-type drugs for years. I took them from second grade to ninth grade any time symptoms recurred. That is standard rheumatic fever treatment.
Look how long teenagers are treated with antibiotics for acne--for YEARS. For acne!!!!.
Look at treatment for TB.
I have heard stories just like yours over and over and over in the 7 or so years I have been involved with this disease. You have lyme disease, hon.
The doc is the key to getting rid of this disease. That is the important thing for you to know. Can't emphasize that enough. Lots of doctors treat lyme disease, but not many know enough to get rid of it for people.
Find out if your doc has been successful in getting rid of this disease for a number of people. People on this board will tell you, and you can contact the lyme support groups in your state to find out. Just click on Support Groups on the left side of the page.
Glad you found this site. We will be happy to answer your questions.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Sorry about not breaking it up, i wrote it from my phone, and it is hard to put it in paragraphs from a phone. Its just that so many people are saying that i dont have it. My neuro, the ID doc, my pcp. Im just scared, and i keep thinking, what if it is a mistake? Did anyone else have symptoms like mine?
Posts: 12 | From Detroit Michigan | Registered: Sep 2010
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posted
Yes, it is definitely hard to go against the opinions of medical people. We have been trained to be unquestioning in all things medical. Which doesn't work when the medical establishment has botched a disease, like lyme.
So, you are going to have to have courage and learn to educate yourself so you can get more help than you have been getting so far. That is thing about cases like yours, they have a whole pile of docs that have not helped, and that is clue that a different course of action needs to be taken. You did it, good girl. But now you need to move on, and not listen to anymore naysayers who don't help. Don't expose yourself to discouraging people. It saps your energy and self confidence.
Good luck. You are on the right track now, I think.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Almost all of us have or had symptoms like yours. It doesn't seem likely that a mistake was made. When people tell you about rarely seeing false positives....BELIEVE THEM. I have never, ever even heard of anyone with a false positive. You would be shocked at how many of us had false negatives.
Tonya, don't mess around with this. Don't underestimate this disease(s). It will KILL you if don't get adequate treatment. I wish you the best of luck.
Posts: 246 | From south florida | Registered: Mar 2010
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quote:Originally posted by Lymetoo: This part doesn't sound like a good LLMD to me:
"He wouldnt really answer my questions. He said igm meant new infection and i said well ive been sick for 18 months, how can it be new and he didnt answer me. I just felt like he didnt really listen."
Most LLMD's LISTEN to their patients .... and IgM's are more likely to come back positive in chronic Lyme than an IgG.
He should know that.
It sounds like he did know that. He said she had it 3 or 4 years. Maybe he was talking about how Lyme acts as a new infection. I know my LLMD said it's relatively rare for a WB to have IgG positive ... mine was IgG positive.
I think there's just some confusion here (think of the game telephone ). He KNOWS you've had it for some time.
If you have a positive test and symptoms, you have Lyme. I would treat. My LLMD does not retest. WB shows exposure. Once you have a positive, you know you were exposed. It's a confirmation of diagnosis. Diagnosis is clinical based on symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My WB test results were the same as yours and I got better after extended antibiotic treatment. It seems worthwhile for you to give yourself the 3 months to see what happens.
Posts: 561 | From mass | Registered: Jul 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
great primer on the tick diseases, not just Lyme. A llmd tests for other Tick Diseases, which may be what the 5 vials you donated to him are for.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I just started (5 months) with this whole crazy world of Lyme. I suggest you watch the documentary Under Our Skin and read that great book..(name I can't remember.. someone help me out)?
These both helped me understand the CRAZY world of Lyme. I understand not wanting this diagnosis. But if you are sick and it is Lyme, you need to get treated.
I have a positive IGM WB 23, 41 and a bunch of nonspecific bands. Which is CDC positive from what I understand. I am not better yet, not by a long shot.. but I am trying everything and sticking with LLMDs.
You are in the right place, I am glad you posted. The Lyme world is crazy. I never knew it.. I had no CLUE. I thought tick bite, rash, flu-like symptoms, couple weeks antibiotics, better. I had no clue. AND THE POLITICS!? WHAT@! check out the movie and book...
hang in there. Renny
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Tonya 27, I am so sorry that you are going through this. I don't have Lyme, but my daughter and husband do. My husband has been sick for 20 years and just got diagnosed. My daughter who is 16 got bit from a tick at age 5. Over the years she has had all kinds of symptoms, very much like yours.
When she was 15 she got mono. She hasn't been well since. She just began treatment in February of this year. She is beginning to get better. It took her 11 years to get this sick and it will take time to get her well.
It is so hard to listen to all of your doctors, internalize your symptoms and maybe just start to think that you're depressed, or crazy or whatever. After all you're sick, but they can't find anything wrong. So it's got to be in your head, right? WRONG!!!
Your Lyme test is positive. If you don't treat, you will get sicker and sicker. If you wait to treat until you are too sick to function, you may never get well, you could even die from complications from this disease.
As others have stated most PCP's, ID Docs and Neuro's don't understand how to test and treat Lyme. To get an accurate diagnosis and treatment you must see an LLMD. Even the CDC says it is a clinical diagnosis and that the ELISA test has more false negatives than it does true positives.
My suggestion is to educate yourself as much as you can between now and your next appointment. Read the Lyme Treatment guidelines, watch Under our Skin and read Cure Unknown. Read posts on this site, ask questions. Write down all of your questions for your next appointment. I think that you may have been overwhelmed at your appointment today and didn't clearly understand what the LLMD was trying to tell you about IgM and IgG. You are positive.
I know it's hard to accept, and that it would be nice to not have Lyme, but all of the re-testing in the world won't change the facts or how you feel. You don't need another test, you need treatment. I am not trying to sound mean or pushy, it's just that I hope you will understand how seriously sick you are and try to begin to accept the truth.
Best wishes to you in your recovery.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Tonya, if there is one thing you can rely on, it's your GUT instinct!! You have every right to feel confused right now because you are hearing so much opposing negativity from what we, as the patients, have been conditioned to hear.
I don't trust many doctors anymore. Especially an ID duck...uh, I mean doc. Please follow the advise of the LLMD. He's the only one trained to handle this illness. It's possible he may not have the best personality in the world.
Maybe he talks that way to his wife too....regardless, you are justified in your reactions & feelings. But go with your gut. You know your body better than anyone. Read the material supplied by the other posters & evaluate it. I know you'll make the right decisions.
Don't give up...we are here to support you. Don't hesitate to ask for help. We all care.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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