I am feeling a little frustrated with my doctor and I am not sure if I am justified...
She is not a LLMD, BUT she is knowledgeable about Lyme and co's and attend ILADS meeting, follows Burrascano's protocol, etc...
She has treated and is currently treating other Lyme/co-infected patients.
Most or all of her other patients had been diagnosed early, unlike me.
At my last appointment, when I brought up IV b/c of my cognitive and neuro issues and b/c my lyme and co's went undiagnosed for so long, she told me she wanted to keep trying the orals first.
And a few sentences later she said that in a couple of months I might want to see a LLMD, instead of her. ?
I often think she does not take me seriously when I talk about my symptoms...
I was branded as a hypochondriac by the doctors at this same practice for years, so a part of me is still afraid to speak up for myself, when I really want to cry out and demand the most aggressive treatments. I have two young kids who need me better fast.
She has talked about other patients she has put on IV and even in the hospital before.
I am just wondering why she might be treating me less aggressively than some of her other patients.
(I have just begun my 5th month of Babs treatment.)
Beware: you can waste a lot of precious time trying to convince a doctor.
I say: go immediately to an LLMD. Be certain to research well, and determine who will be the best bet for the constellation of symptoms you are presenting.
I'm sure you know to go to the forum, "Seeking a Doctor", and present your symptoms, and see what others say.
Then narrow it down to 3 or 4 across the country, and call each office, and ask about whether the doctor there has treated your weirdest symptom. Ask how it turned out.
Expensive to travel? Being disabled is more expensive, because then you CAN'T work, once the Lyme is sufficiently progressed. I have spent far more than had I initially spent it on US doctor and travel.
I now have a doctor who knows MORE than me about Lyme.
What a difference! I am learning how to function within the limits of my disability, and am working again.
One year ago I was bed-bound. Every time I would merely get out of bed, I was putting myself at risk of having a seizure. Now I can manage them, thanks to true LLMD.
I would not mess with having a late diagnosis.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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I went out of my way to see a LLMD in California, and he will not put me on IV abx. I kept asking why and the nurse just said they don't want to make me too sick. More sick than I have already been the last 16 years?
I feel like since I have had it so long, there should be no question as to if I should have an IV. He also stated that he doesn't do IVs for Lyme. Interesting.
Posts: 33 | From Utah | Registered: Mar 2008
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you are so fortunate to live in a state that has between 9-12 LLMDS!!!!
iOWA, NEBRASKA, S.DAKOTA, and others do NOT HAVE ANY!!! so you have much to be thankful for.
look for another llmd!
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
When your local doc suggested you seek an LLMD in the future, could they have meant a consulting LLMD? Perhaps they are afraid of professional repercussions if they are responsible for prescribing IV Rocephen, especially long-term, when they are not a specialist.
However, if you got it qualified and recommended in writing by an LLMD, who is also an ILADS doc, then maybe your local doc would feel more comfortable prescribing it for you. They would be acting on the recommendation of a specialist. You might bring it up with your local doc.
Since you have 4 months of babs treatment under your belt, this time spent has been worth it--for the babs! Some people can't be treated for too much all at once or the herx could be so horrendous it could damage their brain.