Well at the request of my PCP I got another Lyme test run.... I am currently on IV Doxy and being treated by a LLD in NY. My primary wanted to run another test and have me get a second opinion by a I.D. doctor in Jersey to make sure that treatment protocol was ok. I tested positive by Igenex and met criteria for CDC for both IgG and IgM. More recent test done at quest show zero infection - nothing. The I.D. and my primary are telling me to stop all treatment and get the PICC line out - that I do not have infection.
So now what? They want to rule out MS and Adrenal issues and feel that since the recent Quest results came back negative I should not be on IV antibiotics.
Could someone please tell me which lab of these 2 are most repetable? Now I am wondering if my symptoms are NOT lyme. I am more confused now then ever. I understand Igenex to be the go to Lab, but now I am fearful that they have a high rate of false positives and that maybe I do not have lyme.
I am so confused! I thought I wanted a second opinion but now I regret it!
Hi trigal. I can tell you that Lyme disease can be difficult to diagnose. A lot of people who have Lyme first saw several doctors before getting diagnosed.
No test is completely reliable. No test. Even the CDC (who is behind the times regarding tickborne illnesses) states that a negative test does not rule out Lyme. Are these other doctors aware of this?
In my non-medical opinion, if you are seeing an excellent Lyme doctor I would follow his advice. He would not be treating you if he did not believe you have Lyme. Just as you would not see a neurologist for a cardiac probolem, you should not see just any doctor when Lyme is a possibility. At the same time, it is always good to rule out other things if it has not been done already; however, I would do it while continuing treatment.
IgeneX is one of the best Lyme labs in the country. From what I understand, the majority of Lyme knowledgeable doctors use this lab. Seeing how many Lyme doctors have either had the disease themselves or have had someone close to them who has it, I would trust them.
this is exactly what happened to Mark in 04. He was dx by a LLMD, and put on abx. We obviously had a pcp in MD for him, and when explaining what the dx was, they told us even if is WAS lyme, which it probably was not, he was cured after 6 weeks and should stop. Ran tests thru quest that were neg, and we were very intimidated by what they said about these quack docs that rx abx for long periods and it was wrong. We did not want our son to be a guinea pig for some quack doc when everyone was telling us from hopkins, childrens, and nih that he could not have Lyme. Well, things were fine for a while and then BOOM! Not fine at all.It was back bigtime and he was miserable. In his case absolutely everything else was r/o and I could not rely on convention MD's opinions that he was fine, faking, had reactive arthritis, or that I was somhow making all his horrible symptoms up. (like I could make up fevers and bullseye rashes all over his body the following summer!!) This was interesting to the docs, but they still denied it was Lyme and I was mortified! When my poor baby started hallucinating, couldn't walk some days, was afraid of everything, couldn't focus on a thing, eyes were bloody, throat closing shut, and things were going numb I could no longer think they were right! Nothing is wrong??? What I saw and knew was way different than nothing. A boy who read before kindergarten could no longer read. A boy who adored sports was crying and lying on our couch too tired to play. Nothing?? Quest is right?? I THINK NOT!!! Took him to Dr. Jones and was put back on abx--this time pretty hefty doses. He was better in weeks and continues to get better, thank God!! I wouldn't trust a regular (not Lyme literate) lab or MD for that matter ever again with my son's care. I know it can be very scary to turn your back on what we think are educated, knowledgable doctors at great institutions. Been there, done that. My son's health is too important to have docs that treat him as if there was nothing wrong, and that they knew better that no treatment was best b/c of neg tests. These tests for Lyme suck!!! Sorry, but no ohter word, they suck! The proof is in the pudding. My son got deathly ill in 01. He went seriously down hill from thre and no one knew what was wrong with him. They called him "mystery illness boy!" They called him "fascinating!" Well, I call him the love of my life that is worth the BEST life has to offer. He will only get that with LLMDs and LLLabs b/c he has freaking LYME disease. Took a while to jam that thru my head b/c of being afraid. I am not afraid anymore, just furious at the length of time it took to get here, and the lack of knowledge about this horrible disease that makes people second guess real treatment. Sorry, but I really got going on this. It hit a person nerve with me. I hope you get the help you need. You have Lyme, no doubt. You are not well yet. If you stop treatment--it will rise up again. You can do this, and it would stop the doubts. I did that. I just wish now I had not. I hope our story helps you decide--but everyone must choose what feels right to them at the time. I wish you the best of luck--and sorry for the rant. --L
Hi sorry about the confussion your going through, this seems to be a Lyme rule, get confussed.
I would like to ask you how do you feel on the Doxy? Did you feel sicker while using it, or when first started. Do you see any improvements of your symptoms in anyway?
You have to kind of dig down in your heart, listen to good doctors, but for me I had to come to terms through symptoms and responses to treatment that I was positive. Didn't care what any test said at all.
The CDC said I didn't have Lyme, my doctor yelled to me my first appointment I have Lyme, and Igenex confrimed it. But I didn't believe a thing until I felt the herxing from the treatment and started to improve in many ways. Listen and hear what your body is telling you, doctors could drive on crazy.
Thank you SOOOOO much. Laurie, your story..I don't even know what to say except if there is one good thing that can come out of other's suffering it is that others may learn from it and try to avoid that same pitfall. I am so sorry that you and your son had to go through that hell. I hope he is doing better. What a process you had to go through.....We begin to doubt ourselves..yes...
It feels like it's the LLD's vs. the nonLLD's and LLD labs vs. the nonLLD labs and we are in the middle. I read somewhere that quest was considered the "junk" lab? As much as my PCP is a wonderful person, like ticker said you don't go to a PCP for lyme which is why he sent me to an ID specialist for a second opinion. The ID made some very good points about ruling out other things but was sooooo convienced that I do not have lyme because, "only 2 times out of 4 did I get a rash". Well we all know that stats on that. I will not even go into my symptoms - they are classic for long term lyme - bottom line. Yes, it could be MS or Lupus or Adrenal, but these are my test results from Igenex on 11-04. I don't mean to present like a insecure freak but that is what I am feeling like and it helps to have the feedback....
IgM - Positive
Then Quest on 1-23-05 says 'Nonreactive" across the board and ID says, "No you do not have Lyme, some Labs like to give false positives - get off the meds immediately".
I read last night that someone could test false negative is they are on or have recently been treated with anitibiotics! Hello, for the past 2 months and 1 week IV.
Ekim1111....Thanks for the question...The only thing that I am feeling on the doxy is extreme, extreme fatigue and exhaustion, some jaw pain and a bit of brain fog - not as bad as when I was taking the Zythro. and Ceftin orally. I keep a log of my symptoms and should get back on track with tracking.
Based on clinical symptoms and Igenex lyme is what I have.
You are SOOOO much more positive than Mark!! AND--you will test neg. at quest after IV antibiotics for God's sake! We heard the same thing from3 ID specialists. Those and rheumie were the biggest idiots of the whole pack, I swear. All the rheumies want to do is give you drugs like antinflammatories or DMARDS, and all the IDs did was say that Mark's white count wasn't up so therefore, no infection. His sed rate was freaking 98!! ANA highly positive as well as ACE. Obviously there was inflammation going on but WHY was somthing no one seemed to care about. Throwing drugs at you for symptoms, or being made to feel like a fringe quack is all we ever got. I need to let all Mark's previous docs know what idioits they have been. I need to write them all letters. Hopefully it can help save someone else form having to go thru what he did.
Last edited by laurie864bla; 01-26-2005 at 08:02 AM.
For me - the one thing I see, all that are herxing go through is brain fog. Not only this fatigue, I say this is the first sign you're on the right path.
I would not stop the antibiotics, as this is what I had done for all most 30-years, just about every couple years on average I would be treated for viral headaches, for a couple weeks and got better.
Now I am where I am today. Everyday is a fight for life! My sanity, my memory, - my skills, reading, writing, and having a real smile, all have faded.
What I wouldn't give if there was just someone out there that could learn from us, what we are going through, someway let them feel what is in our heads, and I am sure everyone would stand up a scream in fear!
I am becoming at peace with my self, simple I don't fight for life anymore like you would think. I used to want to work, live, write my books, have over 30 of them and was getting ready to get published.
Thought someday I could make a difference for animals. Was working my butt off to start my own endangered species-breeding program and have a long background in animals. Just knew I needed millions to do it right and was working towards it.
Now I donít look at life this way anymore, no challenges, just acceptance, I surrender and accept I am not who I once was, and I probably will never be again. I live life waiting for this final day, and I am sure on this day Lyme will shine bright. I know where I stand, I know what my body has been through for 30+ years, and I understand Lyme.
So I live today, for today, I donít see to many tomorrows, but then in all of us is HOPE and this is what leads to the next breath I take, and looking forward to the next. I can only say I hope that many can learn the best way there is to learn, from others mistakeís!
To have to learn from your own, sometimes can be very costly at many levels. You fight this Lyme with what you are feeling, understand you are going to have to ignore more then 90% of what the traditional doctors are going to tell you. You have to go by what you are feeling, and if the antibiotics are making a reaction in such ways, it sounds like youíre on the right path. Sorry I am no doctor, but I donít think many doctorís are either.
What a profound post, Ekim. I am crying. Giving up our dreams becuase of an illness is so gut wrenching. I know who people who have done this,(both my Dads--yes, I was lucky enough to have TWO very present, wonderful fathers in my life b/c of a very functional divorce and very mature men who put me first above their own feelings.)Although I was so sad on one hand, on the other I saw great peace and strength in them for realizing life was not going to be the same anymore. Their fight was cancer--one esophageal, the other a brain tumor. Neither one gave up by any means. They just got a level of acceptance about their diseases and got the real meaning of life from them in their last days. LOVE.
Please promise not to give up trying to get well Ekim. Not your old life, not your old dreams--but new ones in your new reality of illness. We are here to love, to help others as best we can, and find our true meaning in life. Just because your meaning has changed because of Lyme does not mean your purpose is any less valuable and important. We all stand with you in hope of a better tomorrow. Peace. --Laurie
Last edited by laurie864bla; 01-26-2005 at 10:03 AM.
Believe me I have never given up, not for a second, just humbled in many ways.
If I can pull through this I see my next book. In spite of doctors how I survived.
I dream of writing this someday. But will save the first word for the last days of my Lyme. If I beat this, I am sure there are lessons here others would learn from and would save them much griff.
Oh yeah, just want to say, my wife as been GREAT. Always there to bring me a glass of water, always there for a home cooked meal, always there by my side with more love then I thought I would ever know!
Thank you Nadia, yourrrr Grrreat!
Last edited by dealer1111; 01-26-2005 at 10:13 AM.