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so frustrated with primary care physician

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Lyme Disease
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Posted 2/26/2015 3:58 AM (GMT 0)
So frustrated. I tested positive in 2012 and was treated with 21 days of doxy and still struggle with all the same symptoms that originally brought me to the doctor. At the appointment he kept saying "lymes" and how there is all this quackery with this disease. I was fuming. Wants me to see a rheumatologist because they are a "lymes specialist". I want to see an llmd but my family is hesitant because it's so expensive but me seeing my primary care and all the different specialists they try to send me to since 2012 is just as expensive. But I also don't have that much money to out at one time. Has anyone had any success from seeing a rheumatologist?
Posted 2/26/2015 4:37 AM (GMT 0)
Geenah, sorry to hear about your pcp. They generally are not a friend to us lymies! I ran into the same problem when I was first diagnosed with a real jerk of a pcp. He pointed his finger at me and practically yelled at me to "stay away from quacks who tell you there is lyme disease in missouri!" I just moved on and have since found a pcp who is very understanding and works with my llmd. As far as a rheumatologist goes, unless they are lyme literate, I don't think they will be of much help to you. Many have been diagnosed incorrectly by specialists who dont understand. Hopefully others here might know of a specialist that can help if your unable to see an llmd. Hang in there!
Posted 2/26/2015 5:09 AM (GMT 0)
I had a really bad experience with a rheumatologist. I was diagnosed with fibro myalgia even though my pupils were 2 different sizes!

If you don't have your health you don't have anything. Educate your family. Money spent on a LLMD is worth it.
Posted 2/26/2015 5:52 AM (GMT 0)
Hi Geenah,

Welcome! A rheumatologist is extremely likely to ignore any possibility of Lyme. If you want to know if you have Lyme and get better with treatment, you should go to a Lyme Literate doctor. If you're still having symptoms, you most likely are battling Lyme.

My PCP referred me to a rheumatologist. He refused to recognize Lyme as a possibility even though I had a positive ELISA. He was convinced it was something else despite my normal test results. He said "You can't get Lyme in California!" That is clearly untrue.

The sooner you get to an LLMD, the sooner you can start treatment and start feeling better. I'm not saying that you should never go to other specialists. However, it sounds like you might very well have Lyme. It is not likely that other doctors will treat you for Lyme. It is not impossible, but it is unlikely. As IHL said, your health is worth it!

Be sure to check out the "New to Lyme" thread at the top of the forum, which contains lots of very helpful info. You can start learning about the importance of detox, as well as other Lyme related things.

You can also do a post "Looking for an LLMD Near" Your Area.

Good luck! Keep us posted.
Posted 2/26/2015 6:03 AM (GMT 0)
Hi geenah29,
Most primary care physicians are at risk of losing at the least respect from their coworkers and peers and at the most their medical license. My pcp was supportive and open to Lyme until she was threatened to stop talking about it with me and is not allowed to prescribe me anything for Lyme and confection symptoms. It is your life and health however and your medical care team does not have to live with the desicions made. My doctor chose to write that I was diagnosed by an "outside provider" which limits her responsibility. But my advice merely as a citizen, not a medical professional, is that you attempt to build a relationship with a physician that supports your right to decide your diagnosis.
It took years for my family to acknowledge my illness and only after my sibling, who is a medical professional had met peers of hers with the disease.
Research and science can support your choice to see an llmd. Use the knowledge you can find to first decide definitively for yourself what you have and it will become easier to convince others.
The rheumatologists I saw referred to llmds as "snake oil salesmen" and diagnosed me with a variety of illnesses that continued to change as I challenged him.
Best of luck, be determined and be well!
Posted 2/26/2015 12:14 PM (GMT 0)
I have to repeat what the above folks have stated.

My PCP treated me for 30 days of doxy after a tick bite with confirmed EM rash. It went dormant for almost 3 years. When extreme neuro symptoms started my PCP sent me to a neurologist. I told him about lyme but he dismissed it and sent to to PT for a disc issue. After PT the neuro dismissed me. Symptoms got worse and I pushed my PCP to refer me to a local major hospital that had a "Lyme Clinic". My PCP thought I had either Fibromylagia or depressions. The Lyme clinic doctor doubted my claims and recommended a rheumatologist. The rheumy also dismissed lyme, and thought I had gout, then diagnosed a rare form of rheumatism.

I finally found a LLMD, fired the Reumy and my PCP. After wasting over two years with traditional doctors I have treated for almost 5 years with ABX and alternative herbal treatment. I'm about 90% healthy again.

See the best LLMD you can find. Yes it will be expensive, but there are no other options to regain your health.
Posted 2/26/2015 1:33 PM (GMT 0)
Geenah,

Sounds like pretty much the same path I took. My pcp brought up Lyme Disease every appointment for several years when I would list off symptoms. Then he would get to the point in my paperwork where I tested negative on the ELISA test and he would redirect to something else that made no sense. After many many specialists, I ended up at a rheumatologist. After trying several meds that had no effect, he looked me straight in the eyes and said to me "we may never know whats wrong with you, but we'll do our best to treat your symptoms". This was darn close to the phrase the doctor said to my Grandmother when she was terminally ill and only had a few weeks left to live!!! That was enough to scare me into finding an LLMD! This disease can be as hard on you financially as it is mentally, physically, and spiritually. Out of everything I just listed there, money is the one I need the least to survive.
Posted 2/26/2015 1:57 PM (GMT 0)
A rheumatologist is not a good idea. If the name of the LLMD you have is too expensive, maybe we can help you find a different one. Maybe that takes insurance, or at least at a lower cost?
Posted 2/26/2015 3:43 PM (GMT 0)
Thank you for all your responses. It is so great to be able to share experiences and to know that I am not the only one going through this...even though I wish there wasn't so many because it is a terrible disease. I'm gonna more seriously start searching for an llmd because it's so true your health really is worth it!
Posted 2/26/2015 10:08 PM (GMT 0)
Yes,, geenah, the health is the most important and the longer you wait, the more treatment will cost and it may even cause permanent damage, so why risk it? Some people found relief with the use of herbs. It depends how and what you want to do. If you absolutely can't afford an LLMD, you can at least do some herbs--you can even make your own tinctures if money is just no where to be found. for this. Whatever you do, it is always better to do something than absolutely nothing.
Posted 2/27/2015 4:37 AM (GMT 0)
I just had the same experience. I posted my experience on Utahgirls story of intro. Maybe if we all wrote letters to someone and complained of our lack of treatment and the way we are treated we could change things. I just don't know where to begin but I will write a letter to start to my pcp firing him as he is useless. If they thought they were going to be sued for non-treatment, wrong treatment or denial of services, then things would be different......
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