I have a follow-up appt today with my family doc (not LLMD). I can't get in to see a LLMD until Oct.
I have read through everything and more that you all have provided to educate myself. (Thanks to all)
But, I was wondering if anyone could suggest the most effective supporting documentation to take with me today.
He is generally very open-minded and listens really well. but I have hit road block this time.
I want to actually take handouts for him.
Here is the background:
I have only had ELISA test so far and it was 1.4.
My primary doc is convinced that this test means it is a recent infection in last 3-6 weeks.
BUT, I am convinced and so is my DH that this is a reinfection or ongoing infection after doing lots of research.
I never suspected Lyme before b/c never found a tick on me (that I can recall).
So, today I plan to plead my case.
I want to try to convince him that I need more than 14 days of Doxy (100mg 2x)
AND I want to be tested for co-infections at least Babs and Bart.
He previously told me that he would only test for co-inf's IF my white blood cell count was high which it was not.
As for why I think ongoing, below are symptoms that have been off and on for past year (most before that, but def heightened in last year) 1. severe vertigo 2. panic attacks and increased anxiety 3. depression 4. extreme fatigue, wanting to nap all day but then can't sleep at night 5. joint pain (hip, shoulder, wrist/hand) 6. foot pain, sometimes severe 7. body just generally aches all the time 8. severe PMS and wacky cycle 9. IBS 10. chest pain, difficult to describe, but not severe 11. short-term memory issues - walking into a room and forgetting why, etc. 12. tingling numbness in limbs 13. night sweats 14. random nausea 15. ear ringing 16. sensitivity to sounds
I know there are more, but I will spare you
Thanks for reading and would appreciate any advice for my appt today!
Posted by Eliz428 (Member # 21509) on :
Also I would take this.
Posted by mmcmann (Member # 21872) on :
Thank you!
Posted by Carol in PA (Member # 5338) on :
It will be a waste of time to try to convince your doctor. He's seen it all, and he'll be resistant to everything you tell him.
But...you probably won't believe me until you go through the effort. No one does.
You've had Lyme a long time. A month of doxy, even at a high dose, will not fix it.
Night sweats might be Babesia. An LLMD will be able to test for and treat this.
Lyme causes low magnesium, which results in certain symptoms, like sensitivity to sounds and light, anxiety, depression, and panic attacks. Also, muscle twitching, spasms, and parasthesias (odd skin sensations), cardiac irregularities, asthma.
Lyme causes hypercoagulation, which results in symptoms like memory problems, depression, IBS and digestive difficulties, headache, pain.
Lyme causes inflammation, which causes symptoms like joint and body pain, less blood and oxygen to the brain (depression and memory problems), tinnitus (ear ringing).
Many of these Lyme symptoms can be helped with nutrition and supplements.
We'll talk more when you get back. Carol
Posted by mmcmann (Member # 21872) on :
Thank you Carol. I know you are prob right. But I feel I need to try to at least get the Doxy extended, right?
I thought that maybe taking only 14 days would be worse. Or do you think it doesn't matter?
Sigh. I don't know. I just hate sitting here waiting until October.
I would LOVE to hear your advice on nutrition and supplements.
Thanks
Posted by Nicole_Denise (Member # 20620) on :
Actually, I know someone who's family Dr. agreed to treat them for Lyme- and follwed Dr. B's treatment guidelines.
He did it because he knew the whole family very well, and so did not agree with the "it's all in your head diagnosis."
But he had to warn the family that if he was investigated, they might have to pay for all the antibiotics.
It IS rare, but to me, it's always worth trying.
Posted by mmcmann (Member # 21872) on :
The appointment went much better than I thought it would.
He gave me 60 days extension of the Doxy and said he would do research this weekend on Bart and Babs.
But, he did refer me to a ID which I have learned from scanning posts that they are the devil!
He did acknowledge the gravity of the disease and possibility that it is not just recent infection.
So, I still want to see the LLMD in Oct, but I feel at least that I made some progress today.
Who knows, maybe my case will prompt him to become a LLMD! Posted by Carol in PA (Member # 5338) on :
Wow, I'm impressed. You did good!
Carol
Posted by Eliz428 (Member # 21509) on :
Excellent!!! My husband had the same result. Some doctors are now willing to go a little ways outside of the box to help their patients get through for a little while longer.
The biggest problems with primary doctors treating lyme is that they just don't know how, even if they are willing to. If you provide them with some guidance, some of them are willing to take the leap. I'm so happy for you. This could make such a huge difference.
Posted by Pinelady (Member # 18524) on :
![[Smile]](smile.gif)