posted
I've been through most of the testing...I think ?? I went through Iginex and the results are too complicated for me to understand. Then my blood was sent off to Bowen to test for co-infections, but it seems they did a smear testing for lyme that came out to be the highest rate for positive. Now I am calling Iginex to send me the package for co-infection testing through them. I am understanding this testing to be kind of a cross-diagnsosing.
Am I the only patient to be so confused? In my regular blood testing my IgG came up low in all of the catagories. He was going to set me up for some IV gamma globulin, but at this last appt. decided to go with the IV Rocephin. FYI: I would assess my condition to be late stage, as I am also diagnosed with central sleep apnea, multiple oral infections,just a multitude of symptoms, although I am sleeping at least 20+ hours a day. It will take me so long to read all of these posts. You cannot imagine the journey just to get diagnosed as I live in Texas and have been dismissed by so many doctors. I just always knew that I was battling some kind of infection, just didn't know what kind. I know that many people go to infectious disease doctors, but I have had no luck with that specialty. I am new, thus I don't think I will be able to give as much to the group as I will gain, maybe over time. I just feel it is so important to let the world know how devestating this is. Laney
Posts: 44 | From San Antonio, TX USA | Registered: May 2004
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SentByHim
Frequent Contributor (1K+ posts)
Member # 3998
posted
Hi and welcome to lymenet. There are a bunch of great folks here from TX. and I am sure that they will pipe in. In the mean time here are a few things to check out:
They will help you sort out some of what is going on. I know I came on here totally confused as to what was going on, not only was I sick but I had no idea what I had and neither did all the doctors I was seeing.
The best advice is definately get over to Seeking a Doctor and find a Lyme Literate Medical Doctor (LLMD).
As far as "giving back" to this board do that by getting better and sharing how you did with those who come behind you. So the first step is GET BETTER.
Sent
------------------ You're allowed to be a victim only once, after that you're a volunteer.Naomi Judd
Posts: 1574 | From Port St Lucie, Florida, USA | Registered: May 2003
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posted
Thank you for the responses.... I just wanted to interject that I am seeing a Lyme literate doctor. I was given a referral by someone involved in this process. I don't know if I said that an order for the IV Rocephin was placed. He also gave me scripts for Flagyl, Diflucan and something else, I forget. Not doing too well right now.
Laney
Posts: 44 | From San Antonio, TX USA | Registered: May 2004
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
WELCOME to LymeNet from a fellow Texan.
I'm glad to know you've found an LLMD, but if you need any other help, I'll be getting in touch with you by private e-mail soon.
I'm being interrupted right now though, so it will be later before I can manage to get to it. Sorry for the delay.
Welcome. You are welcome to check out my website about Lyme disease and email me if you would like to talk or if you have any questions, and that goes for anyone!
posted
WOW !! My fingers are clicking as fast as they can...thanx SentbyHim, WildCandor, treepatrol for the links, I am putting them in my favorites as this site moves so fast I shall blink and they'll be gone. Or is it just that my brain moves too slow ? TxLymeMom I've wanted to visit with you my first time here, I look forward to your email. I showed your profile to my husband and said, "this is one woman in the know"
My doc visit went so fast last week, I am still reeling. He had scheduled IV gamma globulin for the coming weeks, but when the lab work came back from Bowen in the highest range of infection, he decided to just order the IV of Rocephin. So I didn't even know of any questions to ask. I guess my main concern is that this doctor is four hours away and I don't have a local doctor lined up for emergencies. I've had a hard time finding a general physician in my hometown who is favorable with this diagnosis. The trip really wore me out, I've been sleeping since return this weekend. Thanks for all the help. Carol in PA said this was a top notch group. I have her to thank for the invite. But she wasn't kidding when she said the group will come to the rescue..... Laney
Posts: 44 | From San Antonio, TX USA | Registered: May 2004
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lymiecanuck
Unregistered
posted
Hi welcome to lymenet,
Sorry you have so much trouble. That's everybody here, being disregarded by doctors. I am still confused on things and come here to try to make sense of everything. Very difficult to understand with late stage cause many factors involved.
You seem to be on the right track though. Sounds like a great start. You are lucky to finally have someone listen. Probably doesn't seem like that but to be getting i.v is good news. Someone beleives you are sick.
You'll get lots of great info here, and people have suffered from many complications from lyme here , so lots to learn.
SentByHim
Frequent Contributor (1K+ posts)
Member # 3998
posted
Also let me add this, with all the meds you are about to start you may start to feel worse at first. this is a Jarish Herximer reaxion (probally spelled wrong we just call it herxing around here) in the simplist of terms what that is is when the lyme dies the germs kind of pop and release their toxins into your system and you may feel worse for a while. Not everyone herxes, some herxes are mild, some are not. If they get severe it is something to call your dr about.
But all this will put strain on your body, herxing or not. So your desire to sleep is not unusual your body is working overtime to kill germs. Drink lots of water to help flush toxins out, rest if you feel the need to. And don't hesitate to post more question on here if you have them. And soon enough you will start to feel better.
Sent
Posts: 1574 | From Port St Lucie, Florida, USA | Registered: May 2003
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Laney, Hey, glad to see that you made it over here.
You've been working SO hard to get better. I hope the information here will help.
Take care, Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I truly cannot thank everyone enough. The support is tremendous. I am feeling so very tired right now. I wanted to mention that my doctor wants me to see a psychiatrist specializing in lyme and sleep apnea. I have been diagnosed with central sleep apnea which is a brain stem leisons type of apnea, where the brain stem doesn't tell me to breathe. I sleep on an oxygen concentrator. Of the eight hours in the sleep study I spent all but 20 minutes of it in stage two sleep. The 20 minutes were in R.E.M. sleep, but Dr. noted that I never got to the other sleep stages, these are stages where our bodies restore the hormones and other things we need. Dr. told me that serotonin is made in stage four sleep I believe, noting that I never made it there. He would like for me to see this doctor, which I am willing, to see if there might be some connection. I have found one case of central sleep apnea attributed to meningitis, but I've seen two neurologists who declined to take me as patients as they say that they have never seen central sleep apnea cases except in stroke patients. I know I need to see an endocrinologist but my last MRI was uneventful. But for some reason I am not producing any adrenal cortisol or ACTH or other endocrine hormones. It is just that all of these doctors specialties don't look at the big picture, only their specialty which I absolutely have no energy or strength to do. To go out one appt. will cost me in four days of absolute sleep.
I wanted to let everone here know how very grateful I am and if my posts are sporatic at least at first while I am reading so much, please bear with me, I literally sleep 22 hours per day. Bless you all....... Laney
[This message has been edited by lymielu (edited 12 May 2004).]
Posts: 44 | From San Antonio, TX USA | Registered: May 2004
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I will tell you that I suffer from Central Sleep Apnea as well. Matter of fact I suffer alot from secondary disease because of the nerve damage Lyme has done over the years. My stomach, bowel and heart have all suffered from nerve problems.
My sleep apnea has seemed to correct itself since I have been teated for babesia. I was on a BiPap and oxygen concentrator for 4 years. The last 6 weeks I have not used it. I am getting great nights of sleep now.
I am going for more tests next week, I should have done it sooner, but other issues have prevented me from doing so. It will be interesting to see the results.
With all that said, I believe I am making good progress. I think most of what I am dealing with is the neuro piece of it now. All of the inflamation indicators have returned to normal recently for the first time in 10 years.
I was considered a tough case, but there are a good group of LLMD's that do know what they are doing. It is important to follow what they say down to the last detail. I have done this for two years, doing everything that they say. It was not easy, I had alot of down days. I was convinced this was the way I was going to have to live the rest of my life.
But today I finally started getting good news and just like that my attitude changed on a dime. I will say a prayer for your quick recovery.
Posts: 533 | From Las Vegas, NV | Registered: Jun 2003
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