The universal symptom I have for all my immune and digestive problems is nerve pain between my eyes.
Rather than have the "chronic Lyme doesn't exist" fight with my doctors and with Social Security, I talk about my Atypical Facial Pain, a well-accepted diagnosis not disputed by traditional medicine, the word atypical meaning cause unknown..
Traditional medicine understands symptoms, including pain. The hoard of pills they push are targeted toward symptoms, and I am not above taking pain and sleep meds when I can tolerate them, which unfortunately isn't often.
The only doc I tell the truth to is my holistic doc, who treats what's really going on.
With my other docs, it's like a chess game. In exchange for my telling them the part of my puzzle they can understand, they help me with that part of the puzzle.
Only go to Lyme-literate doctors. That's the only guaranteed way to be truly helped. Doctors can't help you if you lie or omit information about your health.
Posted by Brussels (Member # 13480) on :
Even if you don't lie and they believe you, they many times cannot help either.
I think GVS is telling that if you need some medicine (such as pain killer), just invent any story to get it fast, paid by the insurance.
Posted by GVS (Member # 48913) on :
I'm not advocating lying or making things up.
I'm advocating talking to traditional medicine docs about my symptoms, which are things they understand, instead of talking to them about the Lyme disease that's causing the symptoms, which they don't understand, can't diagnose, and can't treat.
The pain docs and primary care providers I have worked with over the years have been consistently respectful and compassionate as long as I stick to talking about my symptoms.
The only doc I tell the whole truth to is my holistic doc. Because her strength is treating impaired immunity in general, and not Lyme in particular, even when talking with her I have to be mindful of things she does and does not understand.
That's OK. My experience with Lyme, over the years, is that as my immune system gains or loses strength over the years, my Lyme levels rise and fall accordingly. My holistic doctor's approach is valid and effective.
GVS
Posted by GVS (Member # 48913) on :
P.S. -- If whatever doc I'm working with just has to have a diagnosis and reason for my symptoms, I tell him that I have Fibromyalgia accompanied by Atypical Facial Pain. That's true. I do have symptoms that match both those diagnoses.
Fibromyalgia and Chronic Fatigue Syndrome are widely accepted these days, but Multiple Chemical Sensitivity and chronic Lyme are not.
I don't care what diagnosis they assign me as long as I get the meds I need.
GVS
Posted by DebraKelly (Member # 24925) on :
I think you're right GVS. If you have the right pcp you can figure out pretty quickly if you feel they will be able to help you out with the lyme such as bloodwork, meds., etc. without lying.
You definitely have a lyme specialist and use the pcp when you need to for certain things.
As we know, lyme treatment is very expensive and we are paying for medical insurance.
It's good advice GVS.
Posted by Lymetoo (Member # 743) on :
I rarely discuss Lyme with a doctor unless I have to.
Most of them here do accept it as long as THEY don't have to treat it.
Posted by lightfoot (Member # 2536) on :
This is an important piece for treatment!!!! It's a matter of getting what you need from the resources at hand! Posted by Brussels (Member # 13480) on :
Some people are not that lucky like you GVS (with nice compassionate doctors, i mean).
When I was super ill with lyme and wanted some babesia medicine 14 years ago, because babesia was crippling me, they just stared at me like I was the alien visiting town.
They did not want to help, they did not believe in drenching night sweats, de-realization, extreme fatigue, extreme air hunger that came and went, heart problems, that my sudden very low ferritin came from that etc.
I told the doctor that Riamet was just a 3 day medicine.
If he did not prescribe me, I was going to go to another doctor and invent the story I was going to go to Indonesia or any place with active malaria, and go to the jungle and need to take with me anti-malarial drugs, in case something happens.
I told him this way, because it was true, I was going to invent that story to another doctor.
So he prescribed me Riamet. Just one course, of course.
Lie or not lie, why bother? They abandoned us suffering, we pay everything from pocket while they should be serving us, patients, but they only serve the pharma industry and their own interests.
It felt terrible to have to beg for a drug. That was the first and last time I did that. I gave up on conventional doctors since that.
Nope, I have no bad conscience to invent stories to them. Not to these people, who are, in my opinion, criminals.
NOW I know some other types of doctors that do help or want to help. But it took me time to find them.
Posted by Bartenderbonnie (Member # 49177) on :
So important to get what you NEED to LIVE FIRST !
Choose your battles carefully.
Once I was recieving treatment, feeling better, then I went on MY crusade.
I picked and choosed who would remain my providers. The deniers I cut loose. The providers I thought were worthy of my precious time and money, I kept. I even bought copies of Dr H's book "How Can I Get Better" and signed the inside front jacket, from your Lyme patient bartenderbonnie. 💚
Posted by Robin123 (Member # 9197) on :
I give doctors a hard time! I say, "You, your family, your pets, your friends, your acquaintances, etc could get this. Wouldn't you want to know how to prevent it from happening or what to do if it does happen?"
And then I give them stats, and more stats, and more info. It's great if you know local, state, national and international stats - pick your choice!
And then I have Lyme brochures ready - I got some for free from the Lyme Disease Association - don't know if they still send them out - if so, get a little variety.
I once handed over 10 different Lyme brochures to a doctor when he started to say there's no Lyme in CA and I had Lyme brochures from the CA DPH!
I don't accept such nonsense anymore. The spirochetal illness is real, it can be seen in darkfield microscopy, tell them about Eva Sapi and her microscope, just don't let up with the info!
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