posted
Thought i'd share what's been going on with me and see if anyone could offer up some advice, i'm sort of at an impasse.
Back in early May i was Dx'd with Lyme for the second time in 12 months.
I tested igg negative and igm positive with QUEST labs.
Since Then i've been seeing a prominent LLMD who has had me on 3000mg of Amoxiciilin. I've been paying him out of pocket and he is expensive.
Over the course of the first month my symptoms improved 98% At my first follow up meeting the Doctor spoke of how i was looking like i'd be an easy fix, and i wouldn't need much longer on ABX.
Over the second month i was stuck in a holding pattern, i couldn't get back to 100%
Over the third month i began to feel worse. I feel like i've made a slow slip back. Now i'm tired every day, sore, weak. Again.
I got healthcare, and established myself with a GP. The GP "ordered" me to stop taking the abx.
I reluctantly obliged. That was 10 days ago. I feel exactly the same, no better, no worse. But i don't know what to do.
Do i go back to the llmd and tell him i stopped his treatment for 10 days, and see if he will still work with me?
Is there a possibility that i can be reffered to someone new who is lyme literate and accepts Empire BCBS?
Either way, i'm going to have to go against the word of one of these doctors. But i can really afford to continue to see an LLMD and not make any progress.
I'm so lost.
Posts: 339 | From Outer Space | Registered: Aug 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sounds like maybe you have a co-infection that has taken up the slack of the infection that was initially treated. Not uncommon from my experience and what I've read here. That said, your LLMD would be the best person to figure out what has happened. I've no doubt they've seen it before.
I'd get a different GP. Personally, no doctor orders me to do anything, especially one who does not know what he is talking about and it is clear that he does not understand lyme disease and should not be giving you advice about it.
I don't know if you can find a lyme literate doctor who takes your insurance. In my opinion, it's worth the money to see someone who knows what they are doing. I know it's hard. We dug into our retirement account and still are but I've learned that I really do need someone who knows what they are doing given the complexity of this disease.
You've just run into the first hurdle. Most of us have had many so I feel for you.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Sure could be a coinfection or two holding you back. Have you been tested for any of them, like babesia or bartonella??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I would stick with the LLMD. They are going to know about co-infections and how to treat them.
If you stick with the GP, you won't have to pay out of pocket, but you also won't get better.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would look into coinfections. Also, when I took amoxy, I took it with Probenecid to keep it in the bloodstream longer and at 123 pounds, I was on 7500 mg per day. It could be you need to hit other forms of the Lyme.
I would talk with the LLMD, the GP won't know this stuff.
What symptoms are you having?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I took doxy for a little less than 2 weeks (from my GP while i waited for the western blot results)
Once i got the (partially) positive result i started with the LLMD. He game me the option to double the doxy dose and continue or go to amox. I chose amox because i know it's easier on my stomach. Maybe i should try doxy?
I was never tested for co-infections.
EDIT: as far as symptoms .. i'm just tired, sore and weak, every day .. even though i sleep great. To the point where i can hardly work. I get headaches almost everyday, although they're usually not severe.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
You are in charge of your life. The doctors are just consultants. Work with all of them for your needs in the areas which they are knowledgeable and combine that with your own knowledge.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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posted
Wow, Your progress and story are almost exactly like mine. I began seeing an LLMD in May and I as placed on Doxy daily and am pulsing Flagyl. Within the first month I improved to 95% of normal, I was ecstatic and thought that I would be an easy case.
However, like you, that was the best that I've felt since beginning treatment. I began to backslide slowly and am now wondering if my abx are even working. I have muscle pain/fatigue as my main symptoms especially in my forearms. I've asked my LLMD to switch my abx however she doesn't want to and is keeping me on course with the doxy, flagyl and supplements.
I also took a 7 day break from my abx due to a severe sunburn that I had, and like you, I didn't feel any better or worse while off of the abx.
That being said, I definitely would NOT start going to a GP because most GP's don't know squat about Lyme. I'd go back to your LLMD and talk with him/her about your treatment. You're not on a cyst buster so I don't really understand your LLMD's plan but I'm sure he/she has one.
We're both still early in treatment and must continue the course no matter how frustrating it may become. It takes diligence and perseverance to beat this thing, so may the Lord bless you to continue the fight. Good luck to you and please feel free to send me a pm anytime since our paths are so similar.
Posts: 43 | From Cleveland, OH | Registered: Apr 2010
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Perhaps you don't have co-infections. Maybe you are better.
If you take a break, maybe take a 12 strain probiotic and Diflucan to see if you feel better.
Maybe you have developed new IgG bands, and perhaps you can get another test at Quest. If you got 98% better, it would be interesting if IgG bands have started appearing.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I'm likely going to a second LLMD and requesting a full range of tests, so we will see what has changes. Though i'd maybe use Igenex this time.
At one point i'd improved to 98% but not now. I'm much better than i was at my worst, but not as good as i've been at my best since starting treatment.
Posts: 339 | From Outer Space | Registered: Aug 2009
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I agree that it is time to either talk to your LLMD in depth about your concerns, or find a dr who will adjust his protocol to fit your needs. You at least need to be evaluated for coinfections...and I wouldn't trust Quest for any of those.
www.igenex.com Western Blot: Test #188 and 189.. costs around $200
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Try a parasite treatment and adding a cyst buster like Fagyl. Parastroy or Purge Parasitis can make a huge difference.
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