Topic: How often do you see your LLMD for a followup?
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
mine says he sees patients undergoing treatment every 4 weeks. Does this sound about right?
The appt's are so expensive. I can do phone consults for a little bit less. I am worried how I am going to afford all this. I am a single woman with no help from anyone. I don't want to be homeless because of this!
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
I think the norm for chronic patients is more like 1-3 months.
I usually go in person 2-3x year. (due to cost, travel, and sense)
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
my first follow up was 5 weeks.....not sure after that....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The docs I know see patients monthly. After so many months, if there are no complications, they can see them every other month. Also, phone consults if no complications. Near the end, you see the doc every 3 months.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
At first every 2 months, the last time it was 3 months, now I am going for 4 months.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I go every month, and some times stretch it to 6 weeks.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
We go every month. Sometimes every other month if no complications or if we just can't afford it.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
What do they do at the followups? are they taking blood? what exactly do they do?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Yes, mine does blood work every time to check all my levels. We also go over my symptoms, adjust medications, etc.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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posted
My LLMD sees everybody every 3 months--I have my first follow up appt. in a few weeks.
I get my labs done locally and have the results sent to his office.
I can call him at his office or at home if I have questions.
He might charge a little if his office staff can't answer the questions for him or if I call after hours.
I think he would make more frequent appts. if I wanted them, but I am relieved to wait longer because I can barely afford the travel as it is.
My condition is not very bad, and my treatment is working slowly, so I don't have much to report after one month. If I were sicker or starting up risky medicines, I might want to go back sooner.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I started out following up every month or two, often with phone consults in between.
The follow ups include regular blood work, discussion of symptoms and reactions to medications, and checking me for rashes.
Now I go less and less, and have "permission" to cancel my appointments or push them back as I'm doing a lot better and pretty much feel comfortable titrating my dosages, etc, without direct supervision.
I am fortunate, my LLMD is a less than 5 minute drive. It is still expensive, though.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
I've been seeing mine every 3 weeks since August. Seems like a lot compared to most of you. Although, months in between appointments sounds like a long time to me.
I have had so many symptoms pop up and go away, questions to ask, meds needing to be adjusted/added/discontinued, tests and bloodwork to be ordered, coinfections popping up, etc.
I don't know how he or I could keep track if we went so long in between. Maybe after a few months into treatment it's standard to space them out further? I do feel as if I've improved drastically in these few months. Not nearly as much to report at my visits now.
Last appointment he bumped me to monthly appointments instead of every 3 weeks. Sounds great to me!
Hopefully I'll get to that 2-3 or 4 month schedule some of you have very soon.
Posts: 423 | From Upstate NY | Registered: May 2009
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posted
We started at 1 month (in Nov 09, right before Tgiving). When we found the tachychardia at the last visit (1 Feb 10), he scheduled to see her again in just under 3 weeks.
I expect that this first year, we will have visits every 4 - 6 weeks, depending upon how things go.
Each visit he reviews the checklist that my daughter fills out compared to last visit, reads the "paragraph" she writes out about her symptoms, what has improved, what is new, how she is feeling, etc. Does a clinical exam, (last time an ekg when her heart rate was up), discusses any questions, comments, ect. Discusses med changes or planned treatment, and we go on our way.
Yeah, it's a lot of money, and it really seriously hurts us (we have 3 kids, all have special needs), we spend about $2000 each month, out of pocket for dr's and meds.
Unfortunetly my husband makes too much money for us to receive any assistance (with anything!), yet by the time the next paycheck comes, we're in the negative (and we don't have a lot of fancy "toys" to show for it). ~sigh~ That's just life for us right now.
Posts: 19 | From Michigan | Registered: Feb 2010
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