posted
After almost 2 months off of rocephin. I went to visit my doctor today. He asked me how I felt, so I explained. It seems like all my symtoms are gone
except for one or two. That is the strange feeling I have in my head. The feeling that you know something is wrong because you feel like you are
walking sideways when you are not. The feeling that you have a point on top of your head, but you don't.The feeling that you are going to faint, but you don't.
Just neuro feeling. I want to believe I am cure, but after only 20 days of doxy and then 14 days of rocephin.. Hmmmm, I don't know... My symptoms
Started 5 months ago and was tested w/ a positive 23band and 31 band WB IGM w/ IGG negative all bands. Well the bands they tested anyways.
Did doxy work? Maybe not, did I have a Herx? Maybe , maybe not. I was only on 200 MG for 20 days, not long enough I guess.
Then the rocephin via Infusion, maybe I herx maybe I did not, but I think it may have improved me, like I stated before most of my symptoms are gone except for one. Feel like I'm going crazy.
Ok so I went back to the doctor, this time I told him I wanted to be tested for co-infections. Bart/Babs/Mycoplasma and EBV. Keep in mind that
my doctor is not LLMD and I told him about this wonderful site that I joined and get lot's of great information. He seemed to listen very well.
He wants to refer me to another neurologist, but I told him I want to wait till I get my lab results before anything. My question is if I come
up positive or titers of a co-infection. What is my next move? What abx should I be on. Abx orals, I prefer because I can not afford the Infusions.
I also have really bad anxiety, which I think is the reason why my neuro symptom gets bad. Could not even concentrate at work.
Posts: 60 | From germany | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Geeze Tony,
The symptoms that you have left sound awful to me....they are a lot like my own and they make life unbearable.
If you have these symptoms, you are nowhere near "cured" and if you do not continue treating, they will only become worse.
I would insist on co-infection testing...if for nothing else, your peace of mind knowing that you tested. The tests do not mean much though, as you know.
Sounds like you need to keep treating my friend. Remember the rule of thumb is 2-3 months after ALL symptoms are gone. You are definately neuro infected still.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Tony, my first instinct tells me that you need to find a LLMD ASAP.
While your doctor seems sympathetic, with the symptoms you are describing you really need to be under the care of a doctor who is already knowledgeable about Lyme, not one who is willing to learn.
Go to Seeking a Doctor and post where you are and people will help you find a LLMD.
Also, avoid neuro docs if at all possible. If you MUST see one, after seeing a LLMD, go to a Lyme Literate one!
Just my two cents here.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Tony,
I couldn't agree more with Lymednva. While the Dr. you're seeing now does seem sympathetic and open minded, sympathy and and open mindindedness don't equal knowledge.
You're obviously still sick and I believe 99% of everyone sick with Lyme is also co-infected with something else wether it be Babesia, Bart, Mycoplasmas or God knows what else.
I'm not sure either why this doctor is trying to set you up with a neurologist when you clearly have a bacterial infection.
You don't need a neurologist. You don't need an infectious disease specialist. You don't need a shrink. You need to see and LLMD ASAP! Please ost over in seeking a Dr. and someone will help you find one.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Tony,
I couldn't agree more with Lymednva. While the Dr. you're seeing now does seem sympathetic and open minded, sympathy and and open mindindedness don't equal knowledge.
You're obviously still sick and I believe 99% of everyone sick with Lyme is also co-infected with something else wether it be Babesia, Bart, Mycoplasmas or God knows what else.
I'm not sure either why this doctor is trying to set you up with a neurologist when you clearly have a bacterial infection.
You don't need a neurologist. You don't need an infectious disease specialist. You don't need a shrink. You need to see an LLMD ASAP! Please ost over in seeking a Dr. and someone will help you find one.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Guys thank you for the recommendation, but it is hard in germany to find an LLMD and the one's I heard about are a little bit far away.
I have a full time job and I do not have the time or money right now to travel such distance. That is why I am local. So I need as much information as
possible to treat myself. My doctor knows about lyme disease, but he is not a LLMD. I already went to one neurologist and it was a waste of time.
So I am not considering to go to another one, I would rather go to a homeopathy before I see another neuroligist.
Posts: 60 | From germany | Registered: Jul 2008
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bettyg
Unregistered
posted
tony,
my heart goes out to you; you're stuck in the middle of NO WHERE with NO CHRONIC LYME LITERATE MDS in your area or country at all!!!
i'm sorry i can't help you, but i send you my support and prayers!
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Okay, I see. Perhaps since your current Dr. is sympathetic and open minded towards Lyme disease, he will continue to treat.
If I were you I would give him a copy of Dr. Burrascanno's Treatment Guidelines, as well as a copy of several published studies that Lyme disease does persist after "adequate" treatment and that many times patients must be treated in an open-ended fashion...that is until a complete resolve of all symptoms and then two to three months after all symptoms are resolved just to be on the safe side.
If he's really open minded, perhaps he could contact one of the LLMD's in Germany and treat you under their protocal?
I'll be back in a minute to post links to Dr. Burrascanno's Treatment Guidelines as well as some other things to give your Dr.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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