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» LymeNet Flash » Questions and Discussion » Medical Questions » can a doctor know 100% that you DO NOT have Lyme?

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Author Topic: can a doctor know 100% that you DO NOT have Lyme?
linen
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I was told today 100% I do not have Lyme. I have had two negative tests. One I was on steroids for Bell's Palsy. I have had most of the symptoms. Bulls eye rash,vertigo,severe joint pain,brain fog,fatigue etc... My doctor says I just have arthritis. I am 43. There are days I have to practically crawl up the stairs. She says there is nothing she can do for me,perfectly normal at my age. I love my doctor but I'm not sure if I trust her on this.
I am wondering if a doctor can tell 100% that a patient does not have Lyme? If you can not is there a way to be quite sure a person does not.
I don't want to have Lyme but as as I live in a place where it common (cape cod,ma) and I have had so many of the flags I really am afraid I might and it's coming up negative. Also I owe it to my husband and five children to try to get this body working better if I can.
If you are in this area can you recommend a doctor that I see? Thank you sooooo much for any input.

Posts: 22 | From cape cod ma | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
philly78
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Your doctor is an idiot and nothing is 100%. [Smile]

You had the bulls eye rash! That is enough for a diagnosis.

For help with finding a doctor, start another thread in the seeking a doctor section if you haven't already.

Oh...and btw, my PCP told me I didn't have lyme too. He was wrong.

And one more thing...if anyone ever tries to give you steroids again....do not take them unless it is a life or death situation. Steroids are like the devil for lyme patients. Very bad and will make you worse.

--------------------
When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal.

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ktkdommer
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You need to switch doctors ASAP. You are not normal.

I'm thinking your lab work was the ELISA or western blot and not done through IgeneX.

Get yourself educated, read a lot, and make a move to an LLMD.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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merrygirl
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Not possible to prove 100%
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scorpiogirl
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Unless he is God he can't be 100% sure of anything!! Find a new doctor. One with less of an ego and better bedside manners!

--------------------
 -

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randibear
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lyme is a "clinical" diagnosis. nothing is fer sure.

but anyone having a rash it sure is!!

and i agree, your doc is suspicious.

--------------------
do not look back when the only course is forward

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anonymiss
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No, a doctor cannot be 100% sure that you don't have lyme. Sadly, most doctors are 100% sure that we don't have lyme, but they don't know what we DO have.

Like someone else said, the bullseye rash alone is enough to diagnose Lyme disease. Bell's palsy is a classic Lyme symptom. Your doctor is an IDIOT!

Sometimes I wonder, how so many doctors can see so many symptoms that are characteristic of lyme disease - in a patient with a history of tick bite and rash - and say it's NOT LYME.

Just more evidence to back up my assertion that you can go to school for a hundred years and still be as dumb as a box of rocks.

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Carol in PA
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quote:
Originally posted by linen:

I am wondering if a doctor can tell 100% that a patient does not have Lyme?

.
No, but there are many doctors who are 100% sure that they do not want to treat Lyme patients.

They know that they'll be hounded by the insurance companies, and they are afraid of losing their medical license.
They put alot of work into their education and career...why throw it away.

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JeniferM
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Carol mentioned "they are afraid of losing their medical license. They put alot of work into their education and career...why throw it away."

I wonder why doctors just don't refer them to other doctors who are willing to take the risk to treat Lyme instead of just trying to sweep it under the rug? It completely baffles me!

--------------------
IgM: [18++,31+++,34++,41++,83-93+] [39 IND]
IgG: [41 IND]
Positive according to IGeneX. Negative according to CDC. Negative for co-infections.
Currently treating for Lyme, Bartonella, Babesia

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anonymiss
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JeniferM,

I am baffled, too! The only thing my mind can come up with is an orchestrated plot to CAUSE chronic disease by withholding treatment. After all, a medical practice is a business and a businesses #1 priority is to make a profit. Treating acute illness properly the first time doesn't generate any "repeat business". I know it sounds horrible and callous and evil, but... Isn't this whole situation and the attitudes of those in charge (CDC, IDSA) also horrible and callous and evil?

Really, think about it. Does it make sense, as a business plan, to make a product that is SO DURABLE and SO WELL MADE that the customer never has to replace it? You can't sustain profit growth unless there's a demand for the product, so make the product cheaply and shoddily and the customer will have to buy a new one every few months, years, whatever.

The same could be said about medicine. If you cure the patient the first time around, then they have no reason to come back! If they "somehow" develop a chronic condition, then they are going to need constant treatment for years, decades, maybe for life. Everyone's happy - pharma, the doctors, the patient... okay, so maybe not everyone!

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TF
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linen, your doctor BELIEVES what he/she has been taught about lyme disease through continuing education materials. The doctor is sincere--and sincerely wrong.

The doctors in this country are being miseducated about lyme disease in continuing education materials prepared by the Infectious Diseases Society of America.

A Boston TV station did a great show on lyme disease about 2-3 years ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/

Then, click on "Here"

The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.

You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.

You will learn why your doctor says what he/she says. You will see an infectious disease doctor say that NO doctor can tell a patient that they don't have lyme disease.

This will really be a good video for you to watch.

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linen
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Thank you all so much I'm really battling mentally with this. I want to believe her and I feel like maybe I'm crazy to believe with the two negative tests. It has been about 9 years I've been dealing with issues that totally match up to Lyme and it's getting worse. I think some where I have a picture of the bull's eye. I wanted to look it up on the web so we took one. I'm going to try to find it and go back to my Doctor with it. I hope I didn't delete it.
I watched the video (Thank you!) and it(and your kind posts) really make me want to pursue this. If you are in the Ma area and know a good Doctor i would love to know. I was sent one by email and I'm going to call first thing Monday morning. I hope they can get me in. I would love to know more in ma (cape or Boston area preferred but I will travel) just in case. Do I need to go through my own doctor to get a referral?
Thank you!Thank you!Thank you!Thank you!Thank you!

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linen
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is Imugen inc in ma a good lab for lyme testing? I have a copy of my results but don't know what to make of it. Is there a site I can go to ,to figure it out? Thanks!
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Lymetoo
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The best lab is www.igenex.com . Get test #188 and 189.

Please post which bands were positive on your test.

tons of info:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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quote:
Originally posted by Carol in PA:
quote:
Originally posted by linen:
[qb]
I am wondering if a doctor can tell 100% that a patient does not have Lyme?

.
No, but there are many doctors who are 100% sure that they do not want to treat Lyme patients.


-
Sad, but true!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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TF
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You don't need a referral from any other doctor to go to a lyme doctor.

Saw your post in "Seeking a Dr." Good for you!

You are finally going to get some help and start feeling better!

I want you to know that I had undiagnosed lyme disease for 10 years before a doctor finally figured out what was wrong with me. I went from doctor to doctor for 10 years!

Well, in April it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.

Lyme stole at least 5 years of my life! So, take hope. You can also get your old life back.

The doc is the key to getting rid of this disease. Can't stress that enough. Get the very best doc you can afford. I recommend one who follows the Burrascano lyme treatment guidelines found here:

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

This document will give you an education on this disease and what good lyme treatment looks like. Burrascano was the lyme disease pioneer and #1 lyme doctor in the world until his retirement. People came to be treated by him from all over the world.

Look at this quote from the top of page 6:

"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms."

Here, Burrascano is saying that there is no test that can tell you with certainty whether or not you have lyme. So, the doctor (clinician) has to decide your diagnosis based on looking at all the facts.

Thanks to this document, I changed lyme doctors and got back my health. You learn as you go along. And, the more you learn, the better you are able to pick a good doctor who has enough expertise to cure you.

Stick around. We will help you however we can.

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map1131
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I do believe knowing what I do now...I would ask that doctor to write a letter stating they are 100% sure you DON'T have Lyme Disease or co-infections and sign their name and medical ID number to that piece of paper.

I would tell them IF you are wrong and I end up in any further health issues due to your refusal to clinical dx me with Lyme based on a long list of symptoms.....I will be back and I hope you have the best insurance policy available because I'm going to came back on you for giving me 100% promise that I didn't.

Would you like to watch this doctor back peddle? I would take good notes on this doctor statement to you. Really if they are 100% sure they should feel very comfortable signing anything????

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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onbam
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The bullseye rash means 100% that you DO have Lyme.
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sandyk
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We too went 5 years, 40 doctors and are finally on the right track.

The best way to know is get to the LLMD and start on antibiotics. If your symptoms get better, well there you are!

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Tennessee1
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If all your symptoms add up to Lyme disease(and from what I've read all yours do) then it's extremely likely you have Lyme disease no matter what the tests say.

Please go to a LLMD.

I was like you in that all my symptoms said Lyme, but I had a negative Elisa and an MD telling me that since the Elisa was negative it was 100% certain that I didn't have Lyme.

I finally went to a LLMD and he told me everything the other MD said was completely wrong. He put me on antibiotics immediately.

It's not normal to be 43 and crawling up stairs. That's completely ridiculous.

Trust yourself and go see a LLMD as soon as possible.

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t9im
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Hi linenL

March 16, 2009, Pediatric Infectious Disease MD stated "I know Lyme and your daughter doesn't have Lyme Disease".

Then said "some of these symptoms are - he then twirls his finger around his temple".

This is from the "expert" with a NE JOM article on Lyme.

Two months later (it did take us a while to work through the controversy and see a LLMD) our daughters western Blot IgG came back with band 30 and 41 positive and 34 and 39 being indetermindate).

We learned to not trust the MD's in this. You need to see Dr. D in Boston (and IDSA MD who was kicked off the Lyme committee of the IDSA).

--------------------
Tim

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linen
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I uploaded my test results you can find them here http://imageshack.us/f/52/scan20001.png/

thank you for taking the time to help me I really really appreciate it so much.
I'm also curious about the RA factor if anyone knows anything about that. My factor was 20 and I read on line that 13.5 is the border for that but my test seems to say 30 so it's really confusing to me.

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linen
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cut and pasted from Lyme symptom lists things that match issues I have and have been diagnosed with.
Sorry this is so long.

not recent
Rash at site of bite
Unexplained hair loss at one point I actually had almost bald spots,hair has come back in and is fine
Facial paralysis Bell's Palsy,
Ringing in one or both ears
Unusual depression
Over-emotional reactions, crying easily
horrible vertigo
Early on, experienced a "flu-like" illness, after which you have not since felt well.

current
mild vertigo
Bone pain, joint pain or swelling, ,complained at times it felt like electric shock
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps,
Shortness of breath, can't get full/satisfying breath, cough (at times seems to be triggered by mold and car fumes)

Numbness in body, tingling, pinpricks MY legs ache so much sometimes I have trouble sleeping
Night sweats or unexplained chills (My husband says my thermometer is way off )
Chest pain ,Heart palpitations or extra beats (showed up recently on a stress test)
Lightheadedness, wooziness specially recently had a few eposides where I was dizzy and felt really off. I also had pain in my chest but could have been gurt.
found something that sounds like what might of happened to me Heart block can cause a slower than normal
heart rate, lightheadedness and fainting, or may cause no symptoms at all.(It seemed very different than vertigo.)
Increased motion sickness
Mood swings, irritability (could be my personality but sometimes I feel like everything is bugging me and I usually
to get away from everyone if I can when I feel that way. )
Disorientation (getting or feeling lost) Sometimes I have to really think about where I am and what I am doing.
Memory loss (short or long term)
Confusion, difficulty in thinking
Going to the wrong place
Speech difficulty (slurred or slow)
Forgetting how to perform simple tasks
fungi (feet)
Phantom smells
Symptoms seem to change, come and go
shoulders and knee joint issues
Stiff or painful neck
Pain in ears, oversensitivity to sounds
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
brain fog/forgetfulness
problems with speech
ringing in ear sensitive to sounds
Severe fatigue
problems with sleep improved with d vitamin 5000 taken daily but still have some issues
rhf rheumatoid factor mine 20 norm range 0.0 - 13.9)

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TF
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Regarding the rheumatoid factor, I am reading on line that the normal range varies from lab to lab. Here is one site that says that:

http://www.webmd.com/a-to-z-guides/rheumatoid-factor-rf?page=2

So, I don't think you have anything abnormal showing up regarding rheumatoid factor.

Your test is not calling it abnormal, and it is giving you the normal range right on the test result. You are normal.

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linen
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Did some more research and I understand now that it depends on how they did the RA test the normal range. Which is why each lab is different with their ranges. Sorry a bit clueless about testing and medical topics I've never been interested before. But I guess it's like Lyme "It is important to realize that none of the tests are perfect, and none alone will prove that a certain kind of arthritis is or is not present. " My doctor has already told me I have these issues so it's kind of mote anyway. I was just curious. Thank you Tf for helping.
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linen
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Any thoughts on the lyme test results? I've searched and searched and I can not "read" it at all.
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linen
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I should also add that many of the things mentioned on my symptom list I have been diagnosed with vertigo,arthritis,gerd,irregular heartbeat etc... not just me giving a list. I feel quite nuts listing it all. I wasn't sick (other then pregnancy and occasional bad cold) ever before i got that bull's eye and now it seems like I have everything under the sun.
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kd888
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Hi Linen,

I just looked over your symptom list....and I thought I was reading my own !!

My first test was indeterminate....and the following two tests were negative. All regular doctors blew me off as not having Lyme.

Thankfully I went to see an LLMD. Please do the same !!

Best wishes

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Lymetoo
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What lab is that????

I can't tell if you had any bands or not. Was 66 reactive?? or 39 ???

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymeboy
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throw her in the quackpile!
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linen
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Lymetutu it's Imugen inc in norwood ma. I know I couldn't find anything to see how to read their test. I don't know what to make of it.
Kd888 I can't tell you how much better you made me feel. Thank you!!

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linen
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Thanks Lymeboy LOL After all I've been reading and watching (under our skin and the link mentioned above) I'm really thinking I do need to move on.
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kd888
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I was tested by Imugen as well....it was where my non-LL PCP sent blood-- my second test.

Upon my own research about Imugen, I found that their 'cutting edge' testing is apparently 'useful' (ha ha) for detecting very early Lyme infection. Like...the same week or day you got bit, maybe ??? !!

I tested negative with them. Big surprise! LOL

Love: 'the quackpile' !!!

Glad I made you feel better, linen. :: [Smile] )))

You do need to move on.

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map1131
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Another lab that wouldn't know a borrelia anti-body if it bite them in the arse. oh no!!!!

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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kd888
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Hi linen,

Could you tell me-- in as best detail as you can--what your 'stiff neck' and 'tennis elbow' symptoms are like?

These two symptoms were my most persistent and long lived. Had tennis elbow for over a year and the stiff neck for 8 months!!

My elbow is better now and my stiff neck is 80-90% gone.

I'm just curious because 'tennis elbow' (I was not playing tennis) is not as 'classic' a Lyme symptom as many others. But it is a symptom.

Also-- there are soo many kinds of Lyme 'stiff necks' that I sometimes wondered if mine wasn't just a monsterous muscle spasm that took a long time to resolve.

My LLMD is sure that both of these symptoms are Lyme related in my case. I do believe this...but hearing from you about yours will just confirm it even more for me.

Thanks for taking the time!! I soooo appreciate it. [Smile]

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linen
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kd888 My neck hurts to turn and often crunches. I had an xray they said nothing is wrong with the bones. I do not think it's muscle it feels like bones to me like the joints aren't lined up right. Separate from that it also aches and just feels stiff,rigid and I can't turn it at all without pain. It aches most of the time when it isn't supported sometimes I wear a brace which my doctor asked me to wear. (hate though because it's so noticeable and people always ask) I also have a pillow that has brought a lot of comfort as far as support at night.
I haven't had tennis elbow in about 6 months so I'll try to remember. It hurt terribly if I hit it or knocked it. I couldn't lift anything with that arm till it healed. Again doctor asked me to wear a brace didn't seem to help much. I had pains that ran down my arm and feel a bit like an electric shock. I couldn't use my hand to write or even lift something as small as a fork. It was really really painful. Sorry that is all I can remember.
kd888 and Pam It's funny because the lab and the test done was why my doctor said she was so sure that I didn't have it.

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map1131
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kd & linen.....I have elbow issues that come and go and it's not tennis elbow it's lyme & co.

Lyme bacteria love the neck. Classic hide out. I think they know it's good place to stay. If abx come into the body they can make a run for the brain.

Many abx do NOT cross the brain barrier. So if they sense the enemy coming they are real close to hiding in brain or even in jaw, dead root canals and dental area.

Pretty smart fellows, huh?

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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kd888
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Thanks linen and map! [Smile]

I had crunching in my neck many months ago which went away pretty quickly once I started abx.

From then on it was just stiffness that felt like an ordinary stiff neck-- like when you sleep wrong. It affected my trapezius muscle as well.

My tennis elbow pain moved around-- one day it would be golfer's elbow, then tennis elbow then just general tendon/attachement pain that often would spread into my forearm and connect up through my shoulder to the neck pain. All of this was on my right side. Just awful !

I had an MRI early on, thinking I had ruptured a disk. MRI showed nothing remarkable.

Once I started on Ceftin, I made great progress.

I still have some nagging upper back pain that comes and goes.....

.....and one fibro-type muscle knot (next to my shoulder blade) all the time! Drives me nuts! I'm trying acupuncture for it. No real success so far.

The darn thing will NOT budge no matter what I do.

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Paul Mall
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Testing is only up to 50 percent acurate
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nefferdun
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Hope you find a good LLMD - you are so fortunate to know the truth and be able to get the treatment you need to recover.

I was told six times I could not have lyme. Not many people with chronic lyme, which includes just about everyone on this site, was diagnosed correctly the first time. That is why it is chronic (entrenched) - because we were not diagnosed when we had the rash, when we went in sick as heck a few weeks later and all the other times we begged to be taken seriously.

I am sorry you have it but so glad you are getting help. Hang in there.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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linen
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Thank you all so much nerve going to call this morning working up the nerve. I have never liked going to the doctors and feel a bit nuts that I am trying to go over my doctors head. I'll post what happened once I call.
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linen
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Worked up the nerve to call I did end up calling the doctor that is local because at the moment I have some issues with pain and driving. But sadly I have to get a referral (even though my insurance doesn't require one) to make an appointment. [Frown] A referral from the doctor who told me she is 100% sure I do not have lyme. [Frown]
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payne
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when doctors lie to you, lie back.
what a horrible thought, i stand on truth with God, always.
But, that means finding a reg/Md that you can tell them of your symptoms and they understand weather they treat you or not.
My eldest Md, believes me and is thank full I have a LLMD to refer to.
My, newest REG/md says lyme does not exsist where we live. I live in America.
""which went right over their head""
So, my point being is when a NonLLMD slips you. slip them back.. play them out for all the treatment and labs you can, may lighten the load on your LLMD, get all the prescriptions you can from the duck, make them sign for all testing and procedures.
What's even more crazy is being claimed disable do to lyme, many doctors will claim it as CFS, ALS, MS, a whole alotment of uncureable disease.
If that's the Game then play it wisely, get, your disablilty and get cured meanwhile with a LLMD...
its a tick eat tick world, balancing it may cure you .. and God will judge your actions and words accordingly..
sorry, 2 wrongs make a right here.

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TULAREMIA/rabbit fever ?

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linen
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thanks Payne thankfully my husband is going to go to the appointment I made with my regular doctor on Friday. She treats him with much more respect then she does me. He remembers the bullseye and can attest to the things I have been dealing with. I find it hard to really push and he's fine with it thank goodness. So if she will not give me the referral we will push if I do not have lyme then what. I know a lot of women my age and tenish years older no one has the amount of injuries,pain,fatigue etc... that I deal with. So I am not going to just except that I have a body of a 70 or more year old at 40. There is no family history of any of this.
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lymeinhell
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Please just find a Lyme Literate Medical doctor in MA and then GO. Pay out of pocket. Beg borrow or steal to get there. Please do not wait any longer - your health depends on this. Is your life worth $200? Seriously.

I made this mistake and will regret it the rest of my life. I dilly dallied with the 'quack's that refuse to acknowledge the tests just plain suck and forked over my co-pays to 20+ doctors while I played the insurance 'referral' game.

This went on for 9 months. I was an idiot because I already had the phone numbers for wonderful LLMD's close to my home. Instead, I tried to convince these 'specialists' that it was Lyme (while they all labeled me as suffering from stress). I took some really scary cardiac and neuro issues to finally give me the kick in the xxx I needed to get there.

Just give up trying to 'convince' your GP and move on. You owe it to yourself and to your family. And if it were me, I'd cancel the appt for hubby - no point.

Oh, and Welcome to Lymenet

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Julie
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lymeinhell

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DoctorLuddite
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Three words doctors should avoid using: Never, Always, Absolutely.

Other posters are correct, bullseye rash and Bell's palsy are more strongly indicative of lyme positivity than a negative standard blood test is indicative of it's absence.

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linen
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Thank you again for all of your input ,your helping me have a back bone. I'm such a wimp. Anyway we're concerned with costs of going for a doctor that is straight out of pocket. Would we have to pay for the testing,meds or would our insurance cover that just not the doctors fee. We have good insurance I do not need referrals. Sorry I've never gone to an out of pocket doctor.
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linen
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One more question I was told they do not have my total medical record. I did sign a release for them to ask for and receive my records way back when I first became her patient. I've been going to her for maybe 7 ish years. The doctor I went to before I have heard is gone so I'm not sure how to find my medical records. It's important as it should have record of the bull's eye,bells' palsy,vertigo etc.. Am I wrong too ,that upon realizing that they haven't not had my records this entire time to be upset that she has been diagnosing me without them? I assumed she at least cursory looked over my records when I became her patient.
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TF
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Regarding costs, you will have to pay for the doctor visit and then submit a claim to your insurance. They may pay a small part of the cost of the visit, or a substantial cost. All depends on the insurance.

Regarding the tests, Igenex doesn't take insurance, so you must pay for the Igenex tests up front 100%. Then, again, you submit a claim to your insurance and they will pay you something toward the tests. I paid Igenex about $600 for lyme and coinfection testing. My insurance co. reimbursed me about half of that, if I remember correctly.

Regarding meds, your insurance will pay for the meds as they always do. It doesn't matter what doctor prescribes the meds.

So, because that first lyme doc visit can be expensive (including Igenex tests), people put the costs on a credit card. Then, submit to insurance and get some pay back and pay the rest yourself as you can.

Regarding your old medical records, you just learned the hard way not to take anything for granted. After you sign a release for a new doc to get medical records, you need to check with the doc to find out if they ever got your records.

Your doc's office is saying they don't have your total medical record. You are going to have to find out what that means. Maybe it means the old doc didn't have complete records (didn't keep much), or that he didn't send it all to them, or many other things.

You can ask to see what records they have so that you can decide if what is missing is important or substantial or not.

It is awfully late now to try to go after those old records. But, you may want to try on your own to contact the prev doc's office and see what you can get.

If you can't get those records, it really won't matter when you go to a lyme doctor anyway. The lyme doc will believe you when you say you had bells palsy, a bull's eye, etc. He won't require proof. Just try to remember the year these things happened.

By the way, in the state of Maryland, if a patient presents with bells palsy, the hospital is required to test the patient for lyme disease. That tells you the strong connection between the 2. I don't know if that rule goes for doctors' offices in this state or not. But, it probably does.

I had a mild bilateral bells palsy for 3 years while I suffered with undiagnosed lyme disease. It was so mild that it is called "facial drooping." Then, one day I woke up and it was gone! I thought the whole thing was very strange. I only recalled that it happened once I got my lyme diagnosis and began studying lyme disease and learned about facial drooping.

I mentioned to each lyme doctor that I had had that and they noted it in my records. So, you don't need any medical record to prove these things.

Your current doctor should not need proof of these things either. When you tell her you had a bulls eye, bells palsy, etc., she should make a note in your file about it and that is the documentation of it. Period.

Doctors don't have time to go through the patients entire file (back more than 7 years, in your case), glancing at or actually reading the pages, when you go in for an office visit. So, it really is your responsibility to bring up to them your past medical history in case it is relevant. You summarizing your medical history is quicker and more thorough than asking the doctor to look through perhaps hundreds of sheets of paper back over many years while you sit there. So, the logical thing is that you tell the doc your relevant past history at each visit to have it fresh in their mind. That's what I do.

That is one key to getting good medical care. Do what you can to make it easy for the doc to give you good treatment. That means, reminding the doc of previous problems, previous symptoms, what has happened since the last time he/she saw you, facts of your medical history that may be relevant, etc.

I hope you come to the conclusion that this doctor is NOT going to be someone you can look to for any help with lyme disease, either now or in the future. I know that trust is an issue once something like lyme disease comes into the picture. Many people don't trust their primary anymore because of how they failed to diagnose them with lyme, insisted they didn't have lyme, etc.

If you still think she is a good doctor for other things, then maybe you will continue to use her. But, it is not unusual for people to go to a lyme doctor and then find themselves a new primary care doctor where the history of failure to diagnose for lyme is no longer there.

With the new doctor, you generally don't want to get into talking about the lyme treatment or anything related to lyme. Just use the primary for non-lyme things. Otherwise, you will be butting heads with the new doctor as well.

That's just how it is with lyme disease. You can only discuss the lyme with the lyme specialist. All other doctors will be nasty or pig-headed about it. They will definitely not agree with your treatment, so never bring it up unless you absolutely have to.

This is how it will be in this country until the lyme disease controversy is finally resolved. We may not live to see the day.

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linen
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Tf thank you so much for taking so much time to help me.
I'm going to do what you said and make a list of prior diagnoses that I have had. I'm hoping at the very least she will give a referral to see the LLMD in falmouth that does take insurance.
At this point I do not trust her based on her statements about Lyme and also it took me YEARS to get a diagnosis for another issue that have that should have been caught but wasn't. So I'm going to switch ,just hoping that she will give that referral today.
I remembered back that she must of had my records at some point because she knew my labs for my kidney tests. (during and after last pregnancy I had kidney issues which later resolved themselves) Because one of our first visits she was looking at them and telling me if I wanted to continue seeing a specialist (which I choose not too since you can't really do anything about kidney other then monitor them which she continues to do,no issues) "I could continue seeing the specialist because... "and then she mentioned facts from my lab tests. She couldn't of done that if she didn't have my records.

We do have a fund that is pretax health care that I could use to pay for the tests and probably visit but we are a family of 7 so I can't dip into it too much ,only half way through the year. Also our oldest is going off to collage this year and things are going to be tight. So I'm really really hoping to go the insurance route but will definitely consider going else where if I do not get the care I need. I know I'll probably learn the hard way but I want to at least try a bit first.
I do really appreciate the advice and frankly I know what you said will cause me to switch to a non insurance LLMD sooner if I am not getting results. I wish it wasn't a money issue for us.

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linen
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Well went to my doctor appointment with my husband and it was like talking to another doctor. Based on my symptoms she gave me the Lyme medicine and is testing me for co-infections. I do not understand the flip whether it was my husband or my talking more about why I thought I might have Lyme. She doesn't want to give me the referral for the LLMD yet. She does want to give me a referral for an RA doctor. She thinks too I might have other issues. We have a lovely genetic pool on my mother's side. I don't know so right now,I'm waiting to see if I feel better on these meds and then go from there. thank you all again for your help!
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lorima
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I'm sure you have Lyme. Aside from the extremely suggestive symptoms, you have Western blot bands at 83 kd and 66 kd. (I assume they're reporting IgG rather than IgM, since it's now a late stage illness.)

The 83 kd band, particularly, is highly specific to Lyme.

The 66 kD band is specific enough that it is accepted by the CDC criteria, though Igenex and Dr. J don't use it because it has some cross-reactivity with antibodies to other microbes.

Your insurance may pay for oral antibiotics even though prescribed by a physician who is not on their list. My husband and I both opted for orals, as we've been sick for years, and expected the treatment would be very lengthy.

Orals are safe and have minimal side effects for many (most?) people. We've been on them 4 years, with a couple of breaks to see if we could stay well without them - we couldn't. For us, they have no side effects, and a multitude of symptoms I didn't even recognize as such (irritable bowel, sore shoulders and neck) went away. My best combination is Dr. D's: Biaxin + Plaquenil, plus Nystatin to guard against yeast in the bowel.

I didn't ask the insurance company, just handed the prescriptions in at the pharmacy, and they've been covered with no questions. I think the insurance company gets such a good deal on these drugs that it isn't worth it to them to contest it. Intravenous is another story - I decided not to do it unless I was bedridden or afraid I might die. I decided to go for long-term orals, because I didn't think short-term IV would do anything, and long-term IV is somewhat dangerous, though if you have to do it, you do it.

Nothing's as dangerous as untreated Lyme disease, unless you're one of those lucky people who can tolerate the infection with only mild symptoms.

The LLMD isn't that expensive, considering the alternatives. I'd give up a few luxuries like cable TV, cell phone service, etc. if I had to, to afford it . (My cable TV costs as much as my LLMD per year!) I personally don't spend money on homeopathic, herbal, etc. treatments - those can be really expensive if you get into them big-time. But that's up to you, of course.

Best wishes!

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Robin123
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Hi - my 2 cents here - I think you'll be wasting your time with the RA doctor - I saw several RAs when I didn't know I really had Lyme - it's a waste of time - you just need to get to a REAL Lyme-treating doctor -

And since we all know about meds here, what Lyme med did your doctor start you out on and how much?

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linen
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ic doxycycline 100 I take two a day. So far I don't feel better worse actually they seem to be making me really tired.
I would love to see Dr D but he requires a referral which my doctor will not give me right now. I'm so confused honestly everything I am reading about lyme is so contradictory.
If I do not see a noticeable change in me after the meds are gone. I will be calling someone either another doctor to try to get a referral or see the doctor up in Boston that have to pay out of pocket. I really appreciate all the care and info you all have given me. I know what you have shared will make a difference in my life because if this doxycycline doesn't work, I will pursue the Lyme and not the side symptoms. Thank you!

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linen
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Also lorima how can tell that info (band info )from my test? I would prefer to try to go back through my doctor for another try at referral and would like to be armed with info. Thank you!
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Catgirl
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Linen, log onto lymediseaseassociation.org and they will email you 3 doctors. You want one that is ILADS affiliated (International Lyme and Associated Disease Society), so be sure to check the ILADS box.

The doctors usually have a waiting list that is 1 to 2 1/2 mos long. Ask to be put on a cancellation list in case someone changes their mind. You will have to drive to see them though, but it's your life your talking about, right?

I know that Dr. D requires a referral. Some people really like him and some don't (a couple of people have told me that they got no where with him regarding co infections).

You may just want to find another ILADS LLMD and make an apt. I did this and two doctors offices that were booked for 2 months out both called me with cancellations, so I was able to get in quickly. I had to drive to see a doctor, but I knew from reading on this website that the sooner I got treatment, the better off I'd be.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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linen
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Thank you Mindy I appreciate it. I will do that. I've been on the lyme med for almost a week now. At first I was really sick and now still feeling really tired but my joints are in a lot less pain. I also found out I have mono so the super tired might be from that. Thank you!
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