Quick rundown:
1. Sick since December 2002
2. Many misdiagnoses
3. Infectious disease doc in October diagnoses with Lyme, one month IV Rocephin. One month later with no positive results, tells me I don't have Lyme and passes the buck back to my neurologist with a suggestion for Zoloft (implication, you're crazy)
4. Saw one of the top LLMD's in the country, he tells me I do have Lyme.
My question to everyone, does anyone else have a hard time accepting the fact that they have Lyme disease? I never remember bieng bitten and all the misdiagnoses and failed treatments are messing with my head.
I was convinced up until Monday that it wasn't Lyme but ALS or MS. My LLMD had me take an EMG on Monday to quell my fears. Lo and behold the neurologist looked me straight in the eye and said "you do not have ALS or MS, your EMG is completely normal".
But yet I'm still skeptical. Why is this? Why do I have these thoughts when one of the best LLMD's tell me that I have it (didn't say 100% but no doctor ever has, the whole cover your a$$ thing)?
Eight days into 2000MG of tetracycline a day and I feel crappy. I can't really tell if I'm herxing because mentally I cannot grasp that I probably do have this disease.
Am I crazy? Should I maybe start seeing a psychiatrist?
BTW, an EMG, while uncomfortable, is not that bad, especially for peice of mind!
SpreaditAround,
I too am having a hard time accepting a lyme diagnosis. I accepted it and then after a second IGM western blot (positive first time/ equivical second time after 38 days) I began to question.
I think that so much time goes by with so many missed diagnosis and dismissals that I've become skeptical even of my llmd, especially since I have to pay a fee just to call and ask the nurse a question. I automatically begin questioing priorities with this individual.
I think the fact that you're responding to tetra means something viral or bacterial is going on so keep looking and probably redo the lyme tests.
Ozarka
You know I think all of us at one point we start to think like that...... I still am not sure if any of this is real... but you know, its my only hope. I have spent the last 18 months mis dianogisised with so many things. almost 6 weeks now into my Lyme treatment, I honestly have better days than good days. I am hopeful that this is it and I will get better. You will too!
My only freak out is... What if this is not it? then I have exausted all my resources and feel as though I may be stuck with all this for the rest of my life....... with no real answers as to why?
Fotomom,
I hear you. I feel the same way. I think if I didn't have to pay my llmd just to ask the nurse a question by telephone (they sent me a bill for this) then I'd have more confidence. I just feel at some points like everyone just wants my money. Anyhow, I think that we have to use our best judgment and follow through. I thought I'd get some advice from my GP but as soon as I say 'lyme' it's like a look comes into his eyes and he doesn't want to touch it with a twenty foot pole. I'm seriously considering talking to a medical intuitive--crazy I know--but with all the serious money treatment will take I can't help but consider.
I'm glad you're having some better days and hope you continue to improve.
Sorry for the sappy venting on my part,
Ozarka
I read your post and related to so much of what you said. I don't know if my not wanting to accept the diagnosis is my denial and fear or if it is based on reality. Ya know what really bothered me about your post was that some GP perscribed Zoloft for you! Just because he has perscription rights does not make him qualified to diagnose any sort of suspected psych. issue -I am not suggesting that you have any -I am just making a point. Lord, we have teachers who think they are qualified to diagnose ADD/ADHD but then ask them what the diagnostic criteria is and they look at you like you are from Mars (don't mean to offend any teachers out there - just my experience)! Just goes to show how screwed up the entire system is. The only people who are qualified to assess your Mental Health status are Psychiatrists or Psychologists. To just hand you a script and pass you off?
I begin IV Rocephin treatment this week and even to date still question my diagnosis - even though I am very very highly positive. Family hx of MS and diagnosed with Adrenal Dysfunction makes me wonder of my neurological symptoms are more about those conditions then the Lyme. I just seem to always have those questions in the back of my mind. As I wrote on another post..... Hard part is not knowing if treatment is going to help or not....Lots of $$$$$$ without alot of confidence.
I read your post and related to so much of what you said. I don't know if my not wanting to accept the diagnosis is my denial and fear or if it is based on reality. Ya know what really bothered me about your post was that some GP perscribed Zoloft for you! Just because he has perscription rights does not make him qualified to diagnose any sort of suspected psych. issue -I am not suggesting that you have any -I am just making a point. Lord, we have teachers who think they are qualified to diagnose ADD/ADHD but then ask them what the diagnostic criteria is and they look at you like you are from Mars (don't mean to offend any teachers out there - just my experience)! Just goes to show how screwed up the entire system is. The only people who are qualified to assess your Mental Health status are Psychiatrists or Psychologists. To just hand you a script and pass you off?
I begin IV Rocephin treatment this week and even to date still question my diagnosis - even though I am very very highly positive. Family hx of MS and diagnosed with Adrenal Dysfunction makes me wonder of my neurological symptoms are more about those conditions then the Lyme. I just seem to always have those questions in the back of my mind. As I wrote on another post..... Hard part is not knowing if treatment is going to help or not....Lots of $$$$$$ without alot of confidence.
Take Care,
TG
TG,
If you're stressing about MS, definitely get an EMG to get that notion out of your head!
Hey SIA - Sorry you are going around in circles in your mind about whether this is lyme or not. I can tell you that I think a large part of your doubt is the way the medical community views it.
First of all, they act like it is this minor little infection...so as a patient when your body is falling apart and your brain isn't working you think but the one's in authority are telling me that it is just this minor thing - then you can jump to it must be me. I think what helped me at that point is just becoming my own authority which has its own pitfalls - My "let them fall by the wayside" kind of attitude toward the establishment at times I think made my husband nuts but even he admits now that it took major strength to put up with half the bologna the lyme ignorant doctors dished out. Ok, so there is that point.
Then the bacteria in and of itself is hard to test for - you get all of these blood tests from different labs and they are all different - and once again - what a surprise the establishment's blood tests that are accepted by the CDC say that you are hunky dorey - nothing wrong here - no lyme, no coinfections...oh yeah you have this mysterious virus that you are fighting but that is nothing...Oh, gosh as I wrote that I just remembered my visit to the ER at my Mother's house. She had to run out for something after she knew I was alright and she came right back to pick me up - I remember sitting with that blood test in my hand - staring at the blood counts indicating some virus I questioned them about and they said was inconsequential...ok, now I am crying...wow, didn't realize I was still carrying that around with me...I was so sick...so sick...had started doxy that a veterinarian had given my Mom's dog....after he saw the bruising on my legs...he knew I had lyme...so I had been on it for five days and on the fifth day thought I was having a stroke because my right arm was weak, I couldn't think, the anxiety was unbelieveable...and after the appointment there I sat on the sidewalk waiting for my Mom to pick me up (she had an errand and waited until she knew I was alright but still needed to wait for blood work)...this was supposed to be my vacation...I had to forego this vacation...I had to give up going to massage school, I had missed two weddings....tons of disappointments over the past 6 months and I was so SICK. I was discharged from the ER and I went out to the waiting room for a moment and looked over my bloodwork...there was inconsistencies and highs and lows. I got excited...there had been a mistake the bloodwork wasn't fine. So I asked a nurse what the deal was. I went back to see the doctor again and he told me that all I had was a little, inconsequential virus.
At that moment I just needed to get out of there...I was just so upset...something was wrong, but what? Was I mad? I started questioning myself...It was a living Hell! There I sat on the cold concrete sidewalk waiting for Mom to come back and pick me up - I couldn't stay in the waiting room of the ER or even the Hospital...I had also seen another doctor at the same place that week trying to figure things out...he ordered a thyroid test (which I already had two of) and a blood sugar test and said if those were normal I should consider an antidepressant...I sat on that cold sidewalk looking up at that hospital feeling completely betrayed. I felt like a five year old trapped in a 34 year old body...I felt vulnerable and small, and very scared. Something was really wrong with my body and I knew I had to figure it out because every day I was sicker than the day before.
Every morning I thanked God I was still alive. I went off the doxy after 6 days it was too much to take and still not know if that is what I was dealing with...and it made me so much worse. Then I read here about herxing but when I tried again on day 7 it was just too hard.
It would be another 3 months before I would get my official diagnosis from an LLMD and start treatment. At this point, I would have eye spasms where my eyes would flutter up and down, unrelenting heart palpitations, hair loss, the list goes on forever.
I had two doctors - one an ID and the other a Vet who both had said we think you have tick borne illness. There were uncanny clues all around me that the Universe at large was sending me which consisted of bumper stickers, a 6 o'clock news show, my Mom's dog dying of liver failure while I was on vacation...it is believed induced by the lyme vaccine he had five years ago, a tick in my bed, there are more but I am forgetting them now.
I went through having to accept that most of the doctors I was seeing were not going to save my health or my life...this was not easy to accept because all through my life before when I was ill the doctor could always make me better and he/she was always the expert that I could trust...I had to let go of this...when I let go of this then I was up against the Fear that was a result of the previous realization...all the sudden it was my responsibility to take the bull by the horns and keep on searching for a diagnosis...to study to know end and learn as much as I could. This was so scary. I was alone - there was no doctor cheering me on (well there were a couple as I got closer and I will never forget their support) It was just a scary departure from the old reality I had regarding a doctor's role. Once I got through this though things got better.
Anyway, it is a long journey. I am sorry that your's is still raught with uncertaintity. I would recommend taking some time out, finding a quiet place and listening to your heart, your gut, what does it say. I know this sounds goofy but you need to get all the white coat's voices out of your head. I will tell you even after the IgeneX tests had come back positive and I was going to sleep the night before the appt. with my LLMD to start treatment I was still paranoid that the diagnosis was wrong...that the LLMD wasn't for real...all of that stuff. Then I started treatment and saw the herxing...felt the few days when I have started to feel better...watched as some of the most vexing symptoms have started to disapate a bit. Then I realized that to be a great LLMD in this day and age is anything but easy. That it would be a lot easier to treat other patients then deal with all the persecution and the tough roads to healing most lyme patients have. That is when I started to trust my LLMD, realize that this lyme thing is for real, and that despite I never saw that bug and bite that changed my life that it happened and now I am sick. It was a long road from there to here....
Hang in there. Sorry this turned into an epistle but it just brought up a lot for me. Take care...don't worry the truth will be revealed to you soon...you are close.
Hi SpreadItAround. It is always good to have other possibilities checked out, which it sounds like you have.
So many people are bitten by ticks without knowing it. Your failed treatments were never the proper ones for Lyme disease, so I don't think they should even count.
I can understand your feelings and if you think you could benefit from speaking to someone you should. This disease can be very difficult to deal with. But you are definitely not crazy!
Look at your situation in a different way if you can. You finally have an answer for what is wrong and are getting the aggressive treatment that you have needed. This is good news!
ncgilr88..Thanks for that post.....Absolutely right we NEED to become our own expert and advocate for our treatment....Like we have that time and energy??? Since my LLD does not think my family hx of MS or dangerously low Cortisol levels are relevant, I am seeing my GP who I already gave all my tests to and will order any and all tests related to those possibilites.
Maintaining an empowered attitude seems key...if one Doctor fails me then I will move on....Think of it as fighting for your life...literally.
to the douting lymies
go with the treatment! i have been on abx for 30 months and still weakening. do not mess around vasilating, get into your treatment with all you have available. i live in a wheelchair at 45 and i am telling everyone i meet about lyme disease.
in my opinion you can get lyme from any blood feeding insect, not just ticks!
jon
Hey Ohio - Hang in there...I met a new neighbor the other day...of course I told them my lyme story and what has been going on...this guy said there was a woman in his office who got sicker and sicker over a year after being perfectly healthy...she was in a wheel chair but the antibiotic therapy has helped her and she is walking again and strong. I know you are determined and I believe this will be you too
ncgirl, I could feel the emotion in your earlier post. I'm so sorry you went through that hell and no one would listen. I understand that feeling, you described it well. It's bittersweet that we each understand the same horrible nightmare.
We have to write our own ending and make it a good one. I believe that we have more control than we think and we have to start exercising it. No more bossy doctors! Some people said I went through too many doctors, but after what I have suffered through I got rid of anyone who treated me like it was all in my head. Who knows better than I do what's in my head? I went through about 40 doctors before I got one who would listen. And then it happened, an actual diagnosis and an actual treatment. WOW I might get to have an actual life.
I'm so close I can taste it. Keep fighting and you will win. Don't give up!
The more I read about these LLMD's the happier I am with my doctor. $85.00 office visits, free phone calls to his office, his home, and his cell. Has spoke to me at midnight when I thought I was over a few times, for extended calls.
Bottom line my doctor is getting me better and as I have said thank him for it!
The largest improvement I have had is having my old fillings removed from my teeth this has made me 100% better. If you have silver fillings I would look at them as a possible cause of symptoms.
CAN'T TELL YOU HOW IMPORTANT THIS IS. Get tested to be safe for heavy metals, its easily treated, and for me this was the turning point in my recovery! Those fillings where really taring me up, and from the day they where removed many of my worst symptoms have cleared up 100%!
PS: I only had a couple tiny fillings, never thought anything of them!
Last edited by dealer1111; 01-14-2005 at 04:34 AM.
Ekim,
would you mind sharing who yur doc is? 85.00 is a deal. My initial consultation was 495.00. How's that for a fee? !!!!!!!!!!!!!!!!
also, did you have the Bowen and what was your serial dilution rate and is it going down with treatment?
thanks,
Ozarka
Hey everyone...I've been reading through the posts and I noticed some things here, maybe some of you will agree, maybe some of you won't. I myself, when first diagnosed with Lyme Disease by the Elisa/Western Blot, was very thrilled at the idea--Finally my enemy has a name! However, through my medical training as a pharmacist, I was also very skeptical...My symptoms didn't sound very much like Lyme disease to me; they seemed more like Chronic Fatigue Syndrome. I suffer mostly from cognitive problems (anxiety, panic attacks, depression) and fatigue (unrefreshing sleep, post- exertional malaise). I thought no way could I have Lyme Disease--never remembered getting a tick bite, never got a rash, don't have arthritis anywhere! I, myself, supplied antibiotics to several patients for Lyme Disease and there symptoms sounded nothing like mine. However, I figured I need to give antibiotics a trial run. We were taught in school that, at least for most people, a Lyme infection is not something that requires extensive antibiotic use over and beyond a few month period. The reason for this is that it is a very treatable infection--the antibiotics should and do work very quickly. In the majority of typical cases, at least some benefits are noted within a 3-4 week period. For me, however, after being on antibiotics for over 3 months, I noticed that I never truly realized any benefit from them at all. My treatment included IV Rocephin and Doxycycline which are the hallmarks of Lyme Disease treatment. Honestly, by the end of treatment, in some ways I felt worse. I noticed that while on the antibiotics I felt even worse (not herx worse, just felt lowsy) and my body was slowly deconditioning from just lying around and resting so now I had even less energy and stamina than before going on them.
When the treatment failed, I was angry...I thought, how could this happen? Why didn't it work? I need more antibiotics! I went to several infectious disease specialists and they all told me the same thing...if I had Lyme Disease at all, the infection has to be gone by now...if I am still sick, something else must be wrong with me. I didn't want to believe them...they are liars! They don't want to listen to me! The diagnosis that I was initially skeptical of, I was now defending at all costs! After some time passed, I realized some important things that I couldn't believe I had overlooked.
First, if the symptoms didn't respond in anyway to adequate treatment with Rocephin, there is a VERY good chance Lyme wasn't my problem. Rocephin KILLS bacteria very quickly and effectively. I talked this over with the nurse who came to my house every week to help me with the infusions. I asked her all sorts of questions and she told me she has treated HUNDREDS of people with Rocephin and it almost always works very well. She was in a way shocked that it did nothing for me. Secondly, when people have a mystery illness such as mine, they get scared! They want an easy explanation for why they are so sick! When I heard Lyme Disease, I actually got happy about it! I thought a few weeks on antibiotics and I'm cured! Oh well...i guess life can't always be that easy. Thirdly, I've read so much conflicting info on the web about people like me, it makes me even more sick! Some doctors think its Chronic Lyme Disease, some don't believe in it, some say you really have Chronic Fatigue Syndrome or Fibromylagia, some say there is no such thing--it's really Lyme Disease, some say you need to be on antibiotics for a gazillion years, some say thats absurd, some say it could be MS or ALS, some say it requires physchiatric help, some say you have a sleep disorder, some say Mercury Poisoning! Pull out your fillings! Some say there is NO way the mercury in dental amalgams can harm you, and the list goes on....My god, its enough to drive you CRAZY!!!! Who do you listen to?! Well, for starters, we need to trust our doctors...the real ones...the ones who practice standard medicine...and the reason for this is simple. When you tell ur family doc you have a problem, he will give you an honest answer---may not always be the right one, mind you, but it WILL be honest. There are a TON of qwacks out there and the internet is like their breeding ground! Believe it or not, there really are doctors out there who want nothing more than to seperate YOU from YOUR MONEY with pseudo-science and unproven remedies! Sure, some of these radical treatment may work, or they might kill you...who's to know. In the end, however, don't underestimate the power of the Placebo Effect! Medical studies have proven over and over and over again...when someone wants something to work, sometimes it will! That's a proven fact! Hey, we could all be so lucky as to have that be the case for us. Wouldn't it be grand if I believed in something so much that it cured me? Hmmmmm....I DO believe in God...maybe I should pray more.
For a cold or a broken leg standard doctors are fine, but they did kill my mother and almost killed me.
You say standard doctors to me this means they will for the standard screw up your life totally.
And I know for a fact that fillings in your teeth that are silver are dangerous with no doubts I am living proof of this. If you could see the color of my skin and the way I looked before the fillings where removed and now, it is night and day!
And it is hard to believe what any doctors say about Lyme since everyone seems to have different ideas? But if you could see me two years ago and today, there is no doubt that my LLMD is on the money and the only one after 30-years of doctors that found that I had anything wrong with me!
Let me share a story with you...I went to see a infectious disease specialist over the summer. He gave me his opinion and told me after three months of treatment, there is no way the infection could have survived. He even went on to say that in my case, using Rocephin "was like dropping 5 atomic bombs on the state of Rhode Island!" He was surprised that I was even prescribed it to begin with and of course I didn't work for me anyway. Further, he shared a story with me. He told me about a woman who went to LLMD and, because her symptoms were so vague, he was able to convince her that she did in fact have Lyme Disease and that this will require long-term IV Rocephin. She took the doctors orders but in order to do so, she had to spend her ENTIRE LIFE SAVINGS and even SELL HER HOME to pay for it! He insisted that this was her only hope so she did it. After one year and over $100,000 dollars later, she had NO resolution in symptoms. Finally, after being fed up, she abandoned this LLMD and finally went to see my infectious disease specialist. He was appalled by what had happened to her and after running tests and clinically examining her, it turned out she never even had Lyme Disease to begin with! I believe they found she actually had Lupus so they treated her for it and a few months later she was doing great! This is a true story! In my case, this infectious disease doctor recognized that I may have contracted Lyme Disease sometime in the past year due to a very positive Elisa/Western Blot but that an infection was no longer an issue with me. He tested me for other possible causes of my illness and everything turned up normal. At this point, he admitted VERY HONESTLY to me that he understood that I was very sick, however there was nothing more from an infectious disease standpoint that could be done for me. He didn't know what to do so he wished me luck and that was the last time I saw him. Of course, I was disappointed with what I was told, but I appeciated his honesty and I didn't feel that he had abandoned me---he was actually doing me a favor by saving me time and money! Of course he could have probably made a fortune off of me by giving me more antibiotics and making more appointments, but he truely didn't believe it would help me in any way.
Difficulty accepting Lyme as a diagnosis 
