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.)
Thanks Jackie
Posted by Paul M in MA (Member # 14630) on :
Hi Jackie,
My daughter has Lyme and Babesia. Mis-diagnosed for 7 years.
She was put on orals for approximately 4 months but progress was slow.
It wasn't until 3 weeks after she was put on IV Rocephin (2 grams / once per day), that she started to see significant progress. This has been the best med so far.
Based on what I've seen with my daughter I would push for IV meds. I think your doctor needs to do this for you, especially since she's done it for some of her other patients.
Best of luck with your treatment. Paul.
Posted by canbravelyme (Member # 9785) on :
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.
Best wishes,
Posted by Sparrow (Member # 11734) on :
You said she is not an LLMD. Is she a doctor or a nurse practitioner? If she is a nurse practioner, she may not be able to prescribe IV meds. She has to have a doctor do that.
That is the case in my state. Sometimes LLMD's will see you and prescribe the IV meds, but you will be seen by the nurse practitioner in between visits to the LLMD.
Anyway, she may not be able to prescribe IV meds and her other patients may be seeing an LLMD also.
Have you tried injections? You can get rocephin in an injectible form. They do hurt, but you don't have to go through all the hassle of IV. You might also try Bicillin injections.
I don't mean to be a spoiler here, but IV did not make my daughter magically well. It does for some people I know, but it didn't for my daughter.
She has done the best on zith and mepron and Bicillin.
Posted by justwondering (Member # 12813) on :
Hi Paul,
Thank you for the encouragement and advice.
I am glad your daughter has seen improvement after finding the right drug for her.
I am leaning towards finding a new doctor. I just don't think the one I have is that interested in me...
Thanks so much,
canbravelyme,
thank you for the advice. I wish seeing a LLMD was not so expensive.
Maybe I can find a doctor who does more than shrug their shoulders at the fact that I have lost over 30 pounds since being infected with the Babesia... You would think that would cause a reaction...
Sparrow
She is a doctor, a family practitioner. She says she has successfully treated Lyme, although I don't think any were chronic cases.
I asked her if I could get injections at home or come to the office a few times a week for them and she said no. Maybe she can't prescribe them, I just don't know. She is very vague!
Thanks everyone for their help. I know what I need to do now...
Jackie
Posted by lorenzfam (Member # 14938) on :
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.
Posted by bettyg (Member # 6147) on :
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.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
Posted by bettyg (Member # 6147) on :
to others, she sent me a pm; i set her up w/llmds in her area! Posted by laura j (Member # 14257) on :
Now I'm curious. I was infected 8 yrs. before dx and I still am not on IV, just orals. Am I in trouble?
Posted by justwondering (Member # 12813) on :
lorenzfam,
I have been hearing that more now. Apparently IV is a tricky issue.
Many have said that IV has been very helpful, but others have said it is almost too drastic.
I have also read that it may not be as effective in treating chronic lyme as a newly diagnosed case?? I don't know...
Wish you the best:) Jackie
Posted by justwondering (Member # 12813) on :
bettyg thank you again!!
lauraj,
from what people are saying, it really depends on what your doc believes is best.
I guess if improvement is not being seen, then we need to find new docs and try different treatments.
good luck and keep me posted through im if you find out anymore info on the whole "iv thing"
Jackie
Posted by daise (Member # 13622) on :
Hi Justwondering,
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.
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