Should I get official diagnosis? | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums

Should I get official diagnosis?



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Ms. Klagh

DO YOU THINK I SHOULD GET AN OFFICIAL DIAGNOSIS FOR LYME? That is, get a piece of paper from a doctor verifying that I have lyme.
MY BRIEF MEDICAL HISTORY: I'm 62, was treated for "Hashimoto's" for 14 years; I then completed Dr. Wilson's adrenal program; I have fastidiously addressed diet, mineral/vitamin deficiencies, stress reduction (now retired), but still struggle with excessive drowsiness and depression, brain fog, and what DEFINITELY seems like lyme brain. I had an Elisa test for lyme in 2005, but results were negative for lyme.
WHY I THINK I COULD HAVE LYME: I live in a lyme hot zone (northern Virginia), AND my next door neighbor DID have lyme. Also, my symptoms are consistent with lyme.
I am 99 percent sure I have EBV, since I did have herpes in my 20s and 30s.
CURRENT PLANS: I am preparing to do the Buhner lyme protocol in the next month.
Since official diagnosis can be sometimes difficult to attain, and EXPENSIVE to attain, I'm thinking I'll just go ahead with the Buhner protocol.
I have seen more than 15 doctors in the past 15 years (including GPs, endocrinologists, and an integrative doc, also a couple of ear specialists when I had Meniere's.)
CURRENTLY SELF NAVIGATING: Because I am retired, and have a moderate income stream, am debt free, I AM HESITANT to begin going from doctor to doctor again. Doesn't SEEM like there would be a return on investment, and I have read MANY stories by people who have run into financial difficulties in trying to treat their lyme using the allopathic medical community AND WITH THE INTEGRATIVE MEDICAL COMMUNITY, because they don't take medical insurance).
ALSO - read an interview with Steven Buhner (Buhner lyme protocol) in which he doesn't seem to think an official lyme diagnosis is absolutely required. In other words, it could be possible IF a person THINKS she has lyme, that indeed, she does.


Hi Ms. Klagh,

While it can be helpful to have an official diagnosis, it may be possible to get better without one too. You probably know how inaccurate Lyme testing is.

Many people who have Lyme disease also have other common coinfections such as Bartonella, Babesia, Anaplasmosis, Ehrlichiosis and others.

If you try one or more protocols and find that you are not as well as you hoped, then perhaps there is an infection or other problem that has not been addressed. Then you may need further evaluation.

I did see a Lyme literate MD and got a clinical diagnosis. My lab tests were negative for Lyme, but positive for Bartonella and Rocky Mt Spotted fever. I have no idea when I had the RMSF.

It helped me to have a diagnosis because my tests were negative and I was sure by that time that I had Lyme. I was able to get treatment from my LLMD due to his clinical diagnosis. I did however, have to pay for everything since he did not take insurance, like most LLMD's.

I think it is up to you about whether you seek a diagnosis or not. If you think you may not need to do that now, perhaps in the future you may change your mind.

I think it's a good idea to leave all possibilities open.

You may already be familiar with these websites, but I am including them in case you are not, or someone else may be reading this and want to check them out.

Here is some info about Lyme disease and common coinfections:

Even though you are in Virginia, I am including this site from PA because it has links to good information regarding diagnosis, prevention, testing, etc. :