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FIRED MY DOCTOR!

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Posted 4/4/2011 1:25 PM (GMT -5)
So I went to my doctor to tell him that I was ordering a testing kit from Igenex and would he draw blood so I could send it in for testing. He refused, stating that my sypmtoms are not consistent with Lyme disease, and once again telling me that there is no Lyme in Montana. I gave him the symptoms list for Lyme, circling the ones that I have, and copies of all my medical records confirming treatment for symptoms over the past 20+ years that are consistent with Lyme and co-infections. He claims that all the symptoms can be attributed to other things and that I need to quit getting bad information from the internet. I told him that I was just searching for answers that he was apparently to incompetent, or to close minded, to find. Apparently doctors take offense to be called incompetent as the conversation became much less cordial after that. (at one point I sincerely thought that I was going to knock him on his ***). So, to make a long story short, I'm in the market for a new doctor.

Beau

p.s. this is really getting old

Posted 4/4/2011 1:56 PM (GMT -5)
It can be so frustrating to be spoken to by a doctor who assumes you're a poor naive idiot who believes anything he/she reads on the internet...and it's very tempting to want to prove you're not the naive one. Been there; felt that; can relate. ...although I wasn't as transparent with my thoughts as you. :)

Best wishes finding a new doc. I can attest to the fact that there are precious ones out there who, even though they may not be very knowledgeable about Lyme, are willing to listen and give you the benefit of the doubt. I still remember the day when I was sitting in my doc's office (one I'd found after going through the experience you describe above) and had presented him with all the research I'd found to support why I think I have neurological Lyme and need treatment for it. He said, "Gee. I just don't know, but you make such a good case, that I wouldn't want to be one to hold you back from treatment." He ordered a port to be surgically placed and Rocephin IV home health treatment! Yes, there are dear ones out there. I pray you'll find one soon.
Posted 4/4/2011 3:13 PM (GMT -5)
In The March edition of Consumer Reports magazine out of 660 primary care doctors only 8% of them felt the internet was a great help to their patients. This is what we are up against. Someone with years of practice, & schooling do not like to be told by their patients what they have learned on the internet. Unfortunatlly when it comes to Lyme, & other tick borne illnesses we do learn more from the internet than from our doctors.

Post Edited (Cheezhead) : 4/5/2011 1:37:31 PM (GMT-6)

Posted 4/4/2011 6:07 PM (GMT -5)
Close-minded and egotistical. The secret to finding a good dr. is finding one that admits they do not know everything and there are not many of those. However they are out there. My infectious disease dr. told me that chronic lyme was very rare and kept trying to figure out what was wrong with me since I wasn't getting any better with treatment. When he finally admitted it was lyme and ordered IV, the insurance company turned me down. When he talked to the insurance company doctor to "try" and get me approved, he said the guy was a really nice guy who was trying to help me out but he couldn't talk him into it. BS! When he ordered another syphillus test, I walked out and never went back. He insisted I probably had MS along with the lyme as it was really common to have both. Can you imagine! When I picked up my Igenex results THAT I PAID FOR he charged me $5.00 for a copy. This is one of the leading infectious disease doctors in my area and came highly recommended. Really scary. So glad you had the nerve to stand up for yourself. It is so hard to explain or get people to believe that doctors really don't know lyme.
Posted 4/4/2011 6:59 PM (GMT -5)
Well, I totally understand the difficulty finding a good doctor...I lived in Montana for a while and never did find a doctor I liked.

Since then, I've discovered that Naturopathic physicians tend to listen better and also are more open to the concept that Lyme can exist in a chronic version. They are also usually more willing to be educated by their patients if good solid research is presented to them. So I guess what I'm trying to say is that maybe you would have better luck if you tried a Naturopathic physician instead of a regular MD?

Take care,
Posted 4/5/2011 11:06 AM (GMT -5)
I'm so sorry Bbcoach!! Ohhh, but did you ever give me a giggle!!! Now you are sounding like me!!! LOL LOL LOL!!!! We actually 'hire' a doc - just like we would hire a plumber or an electrician!! If our toilet still didn't flush or the lights still wouldn't come on, would we still thank them & pay them????

With that kind of an attitude out there, I too have turned to 'alternative' medicine. I would actually highly recommend it to anyone, but especially those that find themselves to be in the chronic stage of Lyme & co's. It's a whole other way to get at the root of our problems!

I wish you the best in finding a LLMD! Do you know how you want to approach finding a new LLMD? How can we help?
Posted 4/5/2011 2:11 PM (GMT -5)
I too have been there. When I was first sick and looking for a diagnosis, but Dr kept telling me to get fresh air and that I couldn't have the flu for 6 months and that losing 10 lbs (when I was only 118 to begin with) in a few short months wasn't that much weight loss. When I had blood taken the lab tech told me lyme didn't exist in Northern Mass. Are you kidding me? How can they make these statements? That was 15 years ago now. you would think the medical field would catch up already and get smarter and more educated on this illness.

Well after that dr and an infectious disease Dr told me I had emotional problems and should seek mental help, they both got fired. I soon after got diagnosed with late stage lyme from a llmd and I sent nasty letters to them all so that the next patient that went in to see them with the same symptoms wouldn't get told the same as me. And, I was on 23 at the time and went from perfectly healthy to unable to work or get out bed most days. How could any Dr' consider that to be normal?

Good for you. If we all listened to every dr. we wouldn't all get the treatment or care we need. We have to be our own advocate for our health.
Posted 4/6/2011 1:50 PM (GMT -5)
Thanks for the replies!
I know most of you have dealt with the frustration caused by 'Lyme Illiterate' doctors. I certainly don't mean to bash the whole medical community. I live in a very small town, serviced by a very small medical center and the doctors there have always been extremely professional and caring in their treatment of me and my family concerning other health issues. It just seems like the moment I mentioned Lyme disease everything became confrontational.
Jeminij,
That sounds so much like me. At my latest (and last) appointment, I was trying so hard to get my doctor to explain why they were unable to diagnose so many of my symptoms. Remember, I had all the medical records from childhood documenting everything I had been treated for at their facility. Blood clots (no reason found), ringworm(suspected but no test performed), full body psoriasis(no reason found), pleurisy(suspected but never confirmed), seizures(first diagnosed as juvenile epilepsy, later, believe it or not, panic attacks), temporary onset of blindness(no reason found), temporary loss of coordination of right side of body(no reason found), gout(no reason), urinating blood(no reason), recurrent sinus infections, recurring sore throat and strep, excruciating pain in hands, shoulders, elbows, lower legs (suspected gout-like syndrome but given cortisone injections), plantars in both feet, etc..etc..etc. All of these before I was 40 yrs old and many before I was 30. I have 0 friends that have had half of the health problems that I've had. Somethings not right if a Doctor can't see that more testing is in order. Great, now I'm all fired up again.
Thanks all,
Beau
PEACE
Posted 4/6/2011 7:07 PM (GMT -5)

I am sorry to hear that but then I am glad to hear that as I am getting ready to fire my llmd as well, it's incredible what we have to go thorough and then deal with ignorant a** doctors, I wish you well in your new search.  I live in Florida and I have been told the same thing "no lyme in Florida"  God Bless you, keep praying and being proactive with this disease and God will and God Can deal with this and all the ignorant and incompetent doctors.

Lyme mompi

Posted 4/6/2011 8:59 PM (GMT -5)
I was told I did not have Lyme by three different doctors.....and I live in tick central New York and told them I pulled ticks off myself all the time! Plus I had 15+ symptoms!

Still they thought I did not have Lyme and placated me with low doses of Doxy that did not work! Much time wasted. Grrrrrrrr. Fired all three and now have wonderful LLMD.
Posted 4/7/2011 11:37 AM (GMT -5)
Cat, Good! Yes, we must remember, not all non LD are bad. Mine is open, willing and compassionate.

I insisted on leaving my picc line in so reinsertion won't happen any time soon. I even asked to up the abx. to 2gram, instead of 1 gram originally given, she is doing this!

Gentle persistance, kind words go a long way. Yes, we're all *&*&*& mad! I showed her infomations sheets several times and she never pushed anything away. She's quite a shy Dr., I really like her!

My thinking was this, if she had denied me a stronger dose, I would move on. She even suggested a Lyme Dr. in Pittsburgh, PA. She also mentioned Cleveland Clinic. Now she's willing and open and I'm grateful.

My additional treatment is on hold for one month. Blood work will be done first and then Dr. will see if we still have a problem and then I'll be treated . Tests aren't accurate, so if I exhibit horrible symptoms, then I'll have to convince her that clinically speaking we are still ill.

I'm chronic, I know it. I'll take all I can get. I will say this about various other co-infections, although I tested neg for them, I don't believe it. Why? After one month of abx. I have minor (less headaches), neck pains decreased.
What I still have, though, is weakness, flu-like aches, major fatigue and it's appearing that my ability to walk is difficult.

I told the Dr. about using the cane soon. She was in wonderment! She then was thinking I may have another issue with my back. Yes, I was diagnosed with L4, L5 tear, but honestly I have no more pain. I tried to walk it to heal itself and I believe it is healed!

I know it's the nasty LYME!!

Blessings,
HH
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