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Posted 5/18/2012 4:42 AM (GMT 0)
So people have told me not to listen to Infectious Disease doctors when it comes to Lyme. I had a second opinion today at an Inf. Disease doc and he basically told me the same exact thing as my first doctor did. "You might have been infected months ago, but the infection left your body on it's own. You only have 2 reactive bands", says him. Yet, on the blood results it says positive.
Then he started telling me this bs about how he has a lot of girls my age come in with the same symptoms and there's just no answer yet. He wants to send me to a rheumatologist and all these other doctors. He keeps telling me to go to therapy, it will help. I'm getting tired of explaining the same symptoms, same history/story, and only receiving a funny look with no answer. Anyone gone through/going through something similar? confused

Post Edited (Dani07) : 5/17/2012 10:48:00 PM (GMT-6)

Posted 5/18/2012 4:54 AM (GMT 0)
Yes, I had the same thing happen to me. Several doctors insisted that there was nothing wrong with me even though I NEVER went to doctors for anything in my life and was having extreme symptoms that eventually led to seizures and heart and liver damage.

I was told initially by a family doctor and a rheumatologist I had stress, an eating disorder, or a psychological issue. I would strongly suggest that you find a LLMD. I went to an ND and tested CDC positive for Lyme via western blot. I also had a very low CD-57. I had tons of ticks on my every year and no other health conditions so I knew Lyme was the problem.

Don't think you're crazy. This happens to a lot of people with Lyme. Some doctors just don't want to believe that certain people are not better after short courses of antibiotics even though it has been proven that the infection can survive these treatments.

Do you know which bands were positive? That can make a big difference because some are specific to the Lyme bacteria while others appear with other illnesses.
Posted 5/18/2012 5:05 AM (GMT 0)
I've been fairly healthy up until this too. Only went to the doctor's once a year for a check up.
I'm not exactly sure which bands it was. I think 23 and 18? I could be wrong though. He was saying how protein in my blood stream could have just showed up as a positive to lyme. I don't really understand all the numbers and letters. I understand IgM and IgG, but the CD's confuse me.
This guy says I have no infection in my body, even before he saw my blood work.
Anyway, I am trying to save up money for a LLMD, but they're really expensive.
Posted 5/18/2012 6:29 AM (GMT 0)
No Dani,

You are not crazy! Many of us have had very similar experiences. It is a terrible shame that we actually listen and believe this kind of misinformation!

So until the medical community gets its act together, we have to educate ourselves and be our own health advocates. Learn as much as you can so you don't get misguided.

Hope you can get to see an LLMD soon.
Posted 5/18/2012 6:32 AM (GMT 0)
I know the expense is really difficult. There are a few LLMD's who still take insurance. Also, if your insurance covers ND's, often times they are more open to Lyme diagnosis and treatment. There are also several herbal protocols although I would be really hesitant to try those on my own without the advice or guidance of an ND or someone very familiar with herbs.

Most infectious disease doctors and rheumatologists will not be willing or able to help you with Lyme. They stand by some of the old research which suggested that virtually all cases of Lyme are cured with short courses of antibiotics and that any persisting symptoms are "post Lyme syndrome." They think post-lyme should either be treated symptomatically or not at all.
Posted 5/18/2012 6:20 PM (GMT 0)
Thanks guys, you were a big help :) I'll be seeing a LLMD asap
Posted 5/18/2012 7:53 PM (GMT 0)
Welcome to the great lymes debacle. Even though people on this board have told me time and time again go see a LLMD. I didnt cause my insurance sent me to the wrong doctors.

I finally get it and it's so hard to comprehend as we are told growing up to trust your doctor and if you have doubts get a second opinion. Never was I told maybe I'm seeing the wrong doctor. I'm kinda asking my mailman how to treat me by going to a Reumatologist or a infectious disease doctor or even a Neurologist. Only a true LLMD is trained and makes it his business to understand this strange disease.

BTW YOUR NOT CRAZY I have exactly the same experience as you with the same type doctors. I'm going to get the right treatment as soon as I can cough up the money to see an out of network LLMD. It will be some of the best spent money.
Posted 5/18/2012 9:39 PM (GMT 0)
Sept 2011 - I was diagnosed with Lyme disease AGAIN. Wednesday I resumed IV azythromycin - after 3 months rocephin and 6 months oral azythromycin. Also taking mepron for babesia, clindomycin for viruses, samento (TAO free cat's Claw), and banderol for multiple infections.

First time with diagnosed Lyme disease was Dec 1988. First time I became ill with it was June 1956 (before LD was named) when I was hospitalized for an "unidentified infection," rash, gonadal involvement, complete weakness - and a recurrenc e in 1959. Yup, that sounds like Lyme disease.

The 1988 episode lasted 5 years - during which time I almost died 3 times from LD and another 3 times from medication interactions. (Blood pressure of 40/0 and pulse of 18 just isn't healthy. atrial syncope with ventricular strobing is downright unpleasant, inability to raise one's head off the bed with virtual 80 lb bags of concrete pressing your legs down into the bed ... maybe I was imagining all this??? How about a gall bladder attack while I was on IV rocephin? 400 plus atrial fibrillations per hour for 2 years?) Doctors told me I was hypochondriachal, had anxiety nervosa, I was cured 5 times without reduction in symptoms, etc.

Welcome to the club of chronic Lyme sufferers. Some of us have been in the club for decades (me over 50 years), others are brand new. Most likely none of us will be cured, but we WILL feel better once our meds, diet, and exercise programs are on track. The thing to do now is to find that LLMD who will help you - and PLEASE remember each of our disease complexes is different, each of our bodies' responses is different. What works well for someone may not work at all for others.

Treatment of Lyme disease is an experiment. Therefore, I use some holistic meds (samento and banderol) as well as allopathic drugs (azythromycin, mepron, etc.) Some days I feel good - others I feel like last week's leftovers at the bottom of the refrigerator. Today is the best day I have had in two weeks. Two days on IV azythromycin seems to be what I need right now. Who knows what will work tomorrow?

I chop up my thoughts into small pieces so that I can read them again with understanding. Long paragraphs are too hard to follow from top to bottom
Posted 5/19/2012 3:11 AM (GMT 0)
I was told it was my anxiety too. I felt so crazy. I ended up with a psche nurse practioner and a counselor...and it hasn't helped. My doctor called me back and presented the idea of Lyme. He apologized for saying it was all anxiety...he said that Lyme disease could explain why none of the medications for depression worked for me. I have tried Cymbalta, Prozac, Well-butrin, Celexa,Buspar, and I am currently taking Lamictal. My doc said go ahead and get off Lamictal...so I am slowly getting off of it.

My point is that I think we have probably all been labeled crazy. I think I had that label, or at least the label that it was my anxiety causing all of my weird symptoms, for years. I just finally gave up...then I was told Lyme.

I still feel crazy.

Posted 5/19/2012 4:12 AM (GMT 0)
My Doctor keeps on saying it's 'partially treated depression', even though I have had the bullseye rash and many classic lyme symptoms AND a positive Igenex.

At least he's agreed to disagree and seems satisfied that I've found somebody to treat me. He hasn't kicked me to the curb as MANY physicians do.

No, you aren't crazy, the medical profession is.
Posted 5/19/2012 6:46 AM (GMT 0)
I know. I remember having an argument with my doctor. He could see all these new horrible neurological systems and he said it's your anxiety. But I am taking the medication you have prescribed! How can it be anxiety? I am anxious about being anxious so now I am anxious? At the time he said something like untreatable anxiety...
Partially treated depression? unresponsive anxiety? It's like they think we want to have these problems. We just sit around and dream up new horrible things?
Ugh! At least you all know what I am talking about...
Posted 5/20/2012 11:38 PM (GMT 0)
Since sept 2011...10 specialists, pcp and 4 ER visits...then LLMD....Lyme dx getting PICC hopefully this week. I ALWAYS trusted my gut and asked PA at PCP in october to test for lyme and looked at liked I was crazy. Severe joint pain in ALL joints and 3 pages of symptoms...NO...it was NOT all in my head! :)
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