Well, I have been through the ringer the past 5-6 months with some crazy neurological symptoms. I woke up one day in June with a 10 second episode of vertigo which I got over pretty quickly. Scared the crap out of me, but the doc said it was labyrinthitis and should go in 6 weeks. I got better in 3 weeks or so, but still had a bit of wooziness. A few months later I suddenly got pins and needles in my right arm for about a minute. A few weeks later tinnitus started in my left ear followed by some really bad dizziness for a week. Over the past three months, I have been slowly recovering from my dizziness. I still have the tinnitus 24/7, some ear fullness, and lingering dizziness.
I was really scared about these symptoms, so on a hunch based on another forum's suggestion, I went and got my GP to help me order and take an IGeneX IgM/IgG test. I live in Texas, so I figured that there's no way it could be positive, but I did it for what I thought would be peace of mind. Today I picked up the results from my GP, and I was absolutely stunned. My IgM test came back both CDC and IGeneX positive (IgG was negative). The bands that were positive were:
I am totally freaked out at this point. I have no idea what to do! I live in Texas which has absolutely no LLMDs. My GP is incredibly nice, but he admittedly has no knowledge about Lymes. He was shocked at the test results. He said that he could refer me to a ID specialist, but he totally understood if I had to go out of state to find help. He gave me a prescription for 2 months of Doxycycline 200mg, but from what I have read here I know that will not be enough. He seemed open to trying additional drugs, but he had no idea what to give me.
Can anyone help me out here? I know that my Lyme must be recent, because I never even had one ounce of symptoms until June of this year. I have no idea how I got it, but I know I need to act soon to try and get rid of it if I still can. I know that most LLMDs have a ridiculous waiting list, so I would be willing to fly anywhere to get started sooner rather than later.
I am absolutely shocked and super depressed right now. I spent the entire afternoon crying into my wife's arms. I am only 30 years old with a young 1 year old son, and I desperately need to get better to take care of them. I'm even considering taking SSRIs right now just to get me through the depression and anxiety.
Sorry for the sob story. I know most of you on here have had much more difficult issues with this disease, and I don't mean to make light of it with my complaining. I just don't know what to do.
posted
You were very lucky with your GP and your test result. And with what sounds like an early case. That should be some consolation for you. The quicker a person gets treatment, the better the outcome. So you have a window of opportunity.
Have been hearing that your state is in a bad way for lyme docs. Have you posted for a doc in the Seeking doctor forum of lymenet? Texas does have lyme patients, they just won't let doctors treat it in that state. So, those people will be going elsewhere, and they can tell you where you might get help.
Don't go to the ID doc that your GP mentioned, as it is most unlikely that you will get any help there.
Editing this since I have checked and you did ask for a doc about a month ago. No luck? I sent you a pm with a suggestion.
Posts: 8430 | From Not available | Registered: Oct 2000
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
grimmrimmer,
First of all, I just want to say how very sorry I am that you are sick. You never have to apologize as everybody on this board understands exactly what you are going through.
I'm sure that others will come along with much more information than I can give you. I just wanted you to know that you are not alone in your feelings. This is a great place to learn, share, or just have a good cry.
You will need to take a little time to digest everything. The one thing I can tell you is that you will have to become your own advocate.
I hope that one day, people with LD will be able to go to any family practice doctor in the country and that said doctor will be able to treat us properly. That is just not the case at this time.
I hope that you find a doctor soon. In the meantime, read everything you can.
Good luck and God bless!
-------------------- 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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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
So sorry, I sure can relate to how you feel. I do not have a LLMD and for now will have to stick with my GP..I had the same symptoms to begin with, vertigo etc. That was 10 yrs. ago and I am just now getting a dx of lyme.
My doc gave me an rx for doxy same as you and for now I feel taking it is better than nothing. He also told me to take lots of vitamins, minerals, antioxdants . Since you are in the early stages why not try the doxy for now, maybe not be enough but its a start.
My grandson was camping and developed the bulls eye rash, he went straight to er and started doxy and only had to take it short term. That has been several years ago , other than the rash he never developed any other symptoms.. So maybe yours is early enough that starting the doxy now will help..
It will give you some time to process and try to find another doc.
God Bless
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Chuck, I know it feels overwhelming in the beginning - no one wants, needs or expects this health situation to happen.
Just know that with treatment you will do better. You need to take the time to sort out your options. I'm wondering, if your GP is that nice/open, would he be willing to consult with an ILADS physician? www.ilads.org.
Next, I guess you'll need to consult with those who know the situation in Texas. I don't think it's very good. I saw there are a few TX support groups listed at the left here, if they can be of any assistance to you, plus anyone here on the board who knows.
If you are willing to fly anywhere, then it sounds like you'll be able to connect with a good Lyme-treating physician. Perhaps to start getting info on good LLMDs in surrounding states.
Posts: 13171 | From San Francisco | Registered: May 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Maybe you could print out Dr. B's diagnostic hints and treatment guidelines at www.ilads.org for your GP. Will he give you double the dosage of doxy if you show him it's needed?
I had to fly out of state for treatment. Many of us do that.
You can get better, and it sounds like you're catching it early. I caught it very late and am better. Hang in there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks so much for the words of encouragement, everyone. Does everyone here get better after treatment? Just trying to raise my hopes some...
I'll print out Dr. B's guide and give it to my GP as a start. I'll work on finding an out-of-state LLMD in the meantime. I'm sure my GP would be willing to work with whomever it might be.
Did everyone here have to wait so long to get an appointment with an LLMD? I realize that it takes some patience to get an appointment, but if I did catch this crap early, then I want to get started on nailing it immediately.
Posts: 20 | From TX | Registered: Nov 2010
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posted
Since your symptoms started last summer, I'd say you have a better chance to treat than those who are really long-time undiagnosed.
I suggest you study Dr B's guidelines too, to get as knowledgeable as you can about what you're dealing with.
Appt times with LLMDs vary. Some can get people in in a week's time - you just have to ask.
Posts: 13171 | From San Francisco | Registered: May 2006
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