Doing Better from - No Step Forward, It IS Just New Seat On Lyme-Go-Round. I'm finished...NOT

I had my 1st PCP appt yesterday. After much debate, I decided to tell the nurse who did vitals I am suffering with LD/co. She asked me questions about it, and when I stated I was dealing with anxiety talking to the Dr, the nurse said she understands as her sister (the nurse’s) has LD, that what I'm saying/describing is just like her sister, and that I shouldn't worry about telling the Dr., that she'll understand. Wow. This nurse was awesome, understanding and supportive.

 

The Dr was very supportive and I hope pro-active with her direction. I told her about my positive IGenex from 10/13, and how a LLMD I then saw said I didn't have Lyme, but probably just depressed. This new Dr didn't understand that, especially with all my symptoms. She kept saying that she doesn't understand why all the Dr's I've seen in the past 10+ yrs for all these symptoms never treated me for LD.

 

She had me do an EKG in the office. It was okay.

 

She has me scheduled for appt's to see an ID doctor because she said, "They are the most educated and learned about LD." Red flag!!!! Does this new Dr really understand what's going on with LD? I don't know. Her comment has me worried.

 

Ok,she also wants me to see an ophthalmologist because of my floaters, and blurry vision.

She wants me to see a Heart and Vascular Dr for my heart issues.

She wants me to see a neurologist for all my symptoms.

And, she is having the following blood work done:

 

For Thyroid Check:

TSH w/ reflex t4-Free

 

For Lyme:

Lyme's Titer IGG & IGM (probably quest labs)

 

For Menopause numbers:

FSH

LH

 

Fatigue:

CBC

CMP

 

She also wants a chest x-ray done because of my shortness of breath.

 

When it was all said and done, and after I did a lot of questioning to pinpoint her 'plan' before she left the room, this is what she said:

 

Although she said she believes I do have LD, with both the positive test and symptoms, but she doesn't want to give me any prescriptions/antibiotics until she gets all the tests done and I'm seen by all the specialists, and they give their assessments. This will take about 1.5 - 2 months. She said she does think the ID people will treat me for LD. I said, what if they don't, and after asking her that at least four times, she finally said, "Well, then, come back here and we'll decide then what to do from there."

 

 

So, again, it's hurry up and wait. Why this new dr won't just start me on some type of anti-biotic, I don't know. On one hand, I'm glad she's having all this work done, with labs and drs, but on the other hand I'm thinking, "Why not start me on some meds in the interim???" Crazy. It's all so bleep bleep bleep bleep crazy. And, I'm tired, of all of it.

 

Post Edited (In_A_Cocoon_Now) : 4/28/2014 8:22:35 AM (GMT-6)

I decided to make phone calls Monday, and cancel all the four appts for the neurologist, ID, opthomologist and the Heart and Vascular.

I know I have LD/co, it's confirmed with positive IGeneX test, and symptoms.
I do not, nor should I, need to see all the above dr's just to confirm, "It's not something else."
That is illogical thinking. If it's LD/co, then it's all LD/co.

If this new dr I saw truly believed this was LD/co, then she should have started me on SOMETHING.

I've decided I'm finished with all of it. The naturopath, the pcp, all of it. I realized this is what this is all about: Get the people ill, deny them help/treatement, suck all their money/hope from them, then they die.

I'm just going to finally take out the middle men.

Quote: ".....I've decided I'm finished with all of it. The naturopath, the pcp, all of it. I realized this is what this is all about: Get the people ill, deny them help/treatement, suck all their money/hope from them, then they die......"


I can empathize with this statement. I have been feeling the same way recently. I, too, am very close to saying "....to h--- with this...."

I heard doctors get a kickback for sending patients to specialists. Is that true? Kind of seems like it, especially when I see stories like this.
In a Cacoon, what are you going to do now? How will you know how to treat without a doctor?
=]chloe

ugh what a nightmare! I really hope you get help soon. My prayers are with you.

In_A-Cocoon_Now,

I'm fairly new on this site but I wanted to let you know, Don't give up. You have to be your own advocate on your health. I first saw my family dr. He didn't know what I had but was willing to send me to a specialist. I ask for a lyme test. He did it and it was through the local lab. Which now I know wasn't the best idea but..... I ask to have the results faxed to me as well. It came back negative, of course it did but, I noticed band 23 was positive. I started digging and found that band was Lyme specific. I requested the dr send me to a specialist who knew about Lyme. He sent me to an ID in our local town. Nope didn't have it, wouldn't see me. Requested someone else, sent me to another ID in a big city, nope didn't have it, wouldn't see me. Requested even bigger city dr, nope still didn't have it, wouldn't see me. I was mad as all get out and knew I had to find help in some other manner as I was declining rapidly. I found this site and was once again at least excited that I might be heading in the right direction. Through several emails from this site and many hours of research online I finally located a true LLMD. He actually treats for autism too (his son has it so he's pretty passionate about health care). Anyways, I am now into treatment and I can't tell you how relieved I am to actually know what all is wrong with me. Lyme has wrecked havic on my entire body. There is no way I would get any better if I had not found him.

I hope you don't give up because it sounds like you need to find a good LLMD to get you onto the healing path.

Ask on this site for someone to give you the name of a good LLMD in your area.

Also, as mentioned in earlier post, do follow up with the cardiologist. That was one of the records my LLMD had me request because it can affect your heart. I'm also, following up with an ophthamologist because of one of the medications I am currently taking.

I'm so sorry In_a_cocoon. Just remember we care and are here to support you. Please stay in touch.

(((((((Hugs))))))))

And btw I believe Ive had the disease 10 plus years. And my young son has it too. And I truly believe my husband has Lyme and Bart. As difficult as it is I will never stop trying to rid myself and family of the disease.

Post Edited (BarnGurl) : 4/27/2014 3:57:00 PM (GMT-6)

Barngurl I am sorry but that guy was outright IMMORAL!

We are the pathfinders to help those in the future so they do not have to suffer from this disease.
The doctors I meet do not really understand the disease. They may deal with some other kind of specialty in their practice. They are truly not educated on Lyme at all.

And to be perfectly honest most of them are in CYA mode. Meaning if you tell them you have heart palps they tell you to go for testing to cover themselves for potential liability in the future. Its a big game these days. Send everyone to a specialist and no one is really responsible for the patient.

Some of the best doctors I have ever seen are the Lyme doctors. Dr. Burrascano, Dr. J, Raxlen, Dr. Jones, Richard Horowitz and my own LLMD. These guys are the big heroes in this story and they are the truth seekers. They use their wisdom and instincts to benefit their patients. They are the helpers of mankind, and the bravest of all. Your PCP Cocoon, just like mine, another mindless robot.

Post Edited (BarnGurl) : 4/27/2014 7:10:55 PM (GMT-6)

In_A_Cocoon_Now - and everyone -

Some really wretched stories. I think these are the toughest posts to read on the forum - asking for help from those who really, truthfully, ARE RESPONSIBLE FOR HELPING. Doctor's oath? "First, do no harm."

Well, much, too much harm is being done. If I, YOU, and so many others can learn about what lyme is by watching a few youtube vids and talking symptoms on a fricking forum, I EXPECT MY DOCTOR TO DO THE SAME. I don't blame the medical profession entirely. If they weren't at risk of being sued by insurance companies primarily, but also patients, this would be an entirely different situation. But I am shocked by how many mainstream, western medicine, allopathic doctors have absolutely no clue about many basic biological functions.

I didn't think much about it until now - but my LLMD wants me to see an ophthalmologist due to my eye issues. That makes me suspicious. Like another poster said - why not just start treating for lyme? Why CYA?

-p

Post Edited (Pirouette) : 4/27/2014 11:37:26 PM (GMT-6)

Last night, pretty late, it hit me:

What is different right now, then prior to my pcp appt? Nothing, EXCEPT, the runaround from the pcp.

And, because of HOW the appt was handled, with me having to wait 1.5 hrs to see the dr after my appt time, the effect it had on me, mostly and more than likely, helped along my meltdown. How the dr just 'pushed me' to other dr's. The physical/emotional/mental pain/pressure certainly added to my stress levels.

A new day has dawned. I am once again pushing through all the bunk and regaining my footing.

Thank you to everyone and for your support. It's wonderful to have SOMEWHERE to be able to vent, to people who truly, unfortunately, get it and can relate.

I am going to make a phone call today to the insurance co and see what is covered, and how much is out of pocket. I would like to keep the heart dr, as suggested, but it is dependent on what is/isn't covered. I do know that I'm canceling the ID, neuro and opth. I don't need to see them as I KNOW what is wrong, and what they will do/say.

My God, this is so hard, and my heart aches for everyone of us suffering. Most people suffer in silence since they dont' know what the heck is wrong with them. And those who do know but cant' get help... it's just tough all around.

Everyone, again, kudos to each of you who stepped up to provide support, and to those who didn't but supported me in thought.

I'm glad you are doing better today. Definitely bring someone with you to Dr. appt's, we need all the support we can get. Wow, great Ins. I also heard as of Jan 2014 they have to cover ND's!