What to tell other doctors

[tiredofbeingfatigued]

In light of the need to protect the LLMD in our lives, I have some questions.

What do you tell your Primary Care Physician and any other doctors you see regarding the fact you have Lyme?  I would anticipate that if I share my diagnosis and that am receiving treatment, I will be asked who the treating physician is.  

I want to make sure I share necessary information that could affect any treatment I receive from these other doctors.  They need to know what medications I am taking that may interact with anything they may prescribe for other conditions.  This will prompt them to ask why I am taking the antibiotic and who prescribed them.  But I don’t want to risk problems for the LLMD.  

[JackieCalifornia]

An ophthalmologist is top of the line when it comes to eyes:  they are MDs who specialize in vision -- compare that to

-- optometrists,  who check you eye sight and can determine what prescription of glasses or contacts need to be done, or

-- opticians, who make glasses based on a prescription from an optometrist or a ophthalmologist.

I would see an ophthalmologist (MD specializing in eyes) to discuss Lyme.  After I was diagnosed by my Lyme doc as having Lyme, I went for my regular eye check and told the ophthalmologist about my Lyme diagnosis, and figured he would just roll his eyes and tell me I was nuts (in so many words).  But NO!!  He totally understood and even said, "I take Lyme very seriously!" and he was careful to keep on top of my eyes while I was being treated for Lyme.

So an ophthalmologist (=MD specializing in eyes) is the way to go.

About your heart issues, talk to your Lyme doc first, and if he wants to refer you to a cardiologist (=MD specializing in heart), the Lyme doc will know who to send you to in your area.  Don't wait to see if things stabilize, because if there is something going on, addressing it sooner is always better.  It will also give you peace of mind knowing there is nothing to worry about, or if there is an issue, that it is being addressed asap.  

Someone close to me died of heart failure some years ago when Lyme was a relatively new disease, but her doc never considered Lyme. There was no autopsy to see what caused the heart failure, but I have always wondered if only the doc had understood and tested for Lyme that maybe my dear one would still be here.  So don't wait -- early is better.

[tiredofbeingfatigued]

That is good to know that they are not in denial regarding Lyme.  I am having the increased floaters--lots of squiggly things that sometimes seem to affect my vision.  Would an ophthalmologist be the way to go?  Or, do I need a specialist of some kind?  

I am having some heart issues as well.  My heart races at times--with exertion and even sometimes when I lie down.  I know that Lyme can affect the heart.  I have not tried to see a cardiologist.  I am hoping that once I get on a good Lyme protocol things will eventually resolve.  

[mojogal]

Jackie is right, I had to find a retina specialist and he was Lyme aware so I think they may be a little easier to find.

Good luck!

[JackieCalifornia]

I am told that ophthalmologists are open-minded about Lyme, so maybe you just go for it and tell the doc the whole story.  Slicing and dicing medical symptoms to what a doc might like to hear can cause more problems.  Sorry, wish there were a magic wand available.  Take care --

[tiredofbeingfatigued]

You have both made some good points.  

JackieCalifornia, asking the LLMD for guidance on what to say is a good idea.

But I also understand that some doctors will be skeptical and that is a concern.  They may try to talk me out of what I am doing or make trouble for the LLMD.  Mojogal, you are very lucky to have found such a cardiologist.  It's nice when they actually acknowledge the true cause for a condition.  I am trying to find an ophthalmologist who understands how Lyme can affect the eyes.

All of this denial from the medical community at large sure makes an already bad situation a lot harder to deal with.

Thanks to both of you for your input.

[mojogal]

I don't want to be the bearer of bad news. Hopefully your docs are better but I had to change my PCP because she didn't believe in chronic Lyme. I just found a cardiologist today that is awAre how all the co-s affect the heart. I feel relief because I got Lyme carditis, the old cardiologist called it pericarditis, and thought I was dying from the pain.

[JackieCalifornia]

You are very thoughtful and kind to want to protect the Lyme docs ... in some states they are in more peril than in others, just due to the cranky medical authorities who control licensure etc.  

I would have to guess that most of the Lyme docs are already known as such by the medical board etc., and your first need is to get well.  Your Lyme doc would want that too.  How about putting in a call (or writing a short letter) to your Lyme doc and ask him how to be transparent with other nonLLMD docs you are seeing, but without getting the Lyme doc in hot water?  Truth is, most of the Lyme docs are likely already known to the local and state medical board as treating Lyme aggressively.

Each state is different in how it views and handles all this:  some states just turn a blind eye and the Lyme docs can do pretty much what they please:  the repercussions of any bad outcomes fall on the Lyme doc in question.

Your Lyme doc would not want you to imperil your situation by keeping secret important information about your diagnosis and treatment, so here's an idea:  ask your Lyme doc how to tell the other doc what your Lyme diagnosis and treatment is so that you protect yourself  and you give maximum cover to your Lyme doc, but without imperiling your health.

We bang on here about not ratting out our Lyme docs, because we want to have them up and curing people ... but not at the expense of your own health.  There is a way to balance all this, and your Lyme doc is the one to help you find that.

First in any doc's book is the maxim, "Primum non nocere", which is Latin for "First, do no harm" -- and that means do no harm to the *patient.*

Does that help?