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Posted 9/12/2009 3:28 AM (GMT 0)
Hello Everyone. I have been sick for 10+ years. All doctors just kept telling me it was stress/chronic fatigue and the lastest is fibromyalgia. I had surgery two weeks ago and they found endometriosis and removed it, so my belly pain will hopefully get better. But, as for the joint pain, muscle pain, weakness, numbness, confusion, horrible memory loss, inability to function because my brain will not work with me, and vision problems, etc...who knows. I was tested for Lyme right before my surgery and the result was positive. I was so happy I cried. I know that sounds crazy, but it is something that can at least be treated, right? Well, they tell me that it could be a false positive so I had to go for more bloodwork and wait a month and a half to see a specialist.

So, here are my questions...what if they say it was a false positive? I mean, from what I understand, you can have lyme and test negative. Is there any possible way for me to push for the treatment anyway? And if it is indeed positive, since it is obviously in my central nervous system will they do IV antibiotics? Or will I have to wait until the oral ones don't work?

I am so scared. And I am all alone in this. I was so happy to finally have a diagnosis, but now I am just so scared that nothing is going to be done. I NEED to get better. I cannot live like this anymore.

I also have an IV Antibiotic question....is this a 24 hour thing? Or an on and off thing? Or does it just depend. I am all on my own, so I just didn't know if they would let me do it myself or not. I don't want to have to go to the hospital. That is even worse than being alone.

Thank you so much for your time and answers are greatly appreciated:)

God bless you all

Posted 9/12/2009 2:18 PM (GMT 0)
Number one thing to do is find a Lyme Literate Medical Doctor (LLMD). Regular dr's don't really know how to treat this. My regular dr put me on oral antibiotics for 3 weeks when I was first bit. My Lyme test came back negative so I was pronounced cured and that was it. 2 months later I could not walk. Three weeks of antibiotics was not long enough. As far as IV antibiotics go, the most long term treatments involve a picc line. My daughter had one for a few months. We actually mixed the IV ourselves, administered at home ourselves. Took about a half hour a day. We went once a week to have the dressing changed. One alternative to the antibiotics are Chinese herbs. I currently use Dr. Zhang's protocol and they really helped. If you post where you are from and are looking for an LLMD, someone will know one in your area. You really can get better from this and get your life back. But it takes time, and the treatment actually will make you feel worse before you get better. Dead Lyme causes its own problems. Plus you could have coinfections as well which need to be treated and might not have been tested for. We are all here for you!
Posted 9/12/2009 5:44 PM (GMT 0)
Alone and Scared,  I am very sorry that you are alone and scared.  And I am so very sorry that you have been so sick for such a long time.  This is all so unfair!  I think you will find this forum to be a life saver, please come and ask questions as much as you can. 

Also, make sure to go thru the Newbie's section.  The more you are with us, the less alone and afraid you will feel.  You will learn a lot about yourself and your disease.

Your 'false positive' really depends on what test they gave you.  In all my searches on false positives, I did not find info that supported that this is any kind of problem.  I don't know enough about the Elisa, but it is possible that this test may give false positives -- that is why a positive Elisa is generally followed by a Western Blot.

As far as Western Blots, from everything I found, false positives are extremely unlikely, to unheard of.

Do you know what test it was?  From here on out, make sure to request copies of all lab results -- it's helpful if your Dr will note that you are to get copies on his Rx before you even go to the lab. (not sure that all docs will)

We cannot tell you for sure that you have lyme, but I think no one will ever be able to tell you that you do not have it.  As Ttlittlestar said, you really need to find a Dr who is knowledgeable and treats lyme.

Also, if you've got any cash, getting some blood work from Igenex would be a good idea. (when/if you see an LLMD, they will probably tell you that)  This lab specializes in tick born diseases and their tests are more senstive than general labs'.

I can't tell what your feeling on Lyme is at this point, but I don't think that I, personally, would get into IV abx unless I believed very strongly that I have it. (I'm referring to you, not me).

Your symptoms sure do sound like Lyme, but I think you need a professional diagnosis, which is NOT outside the realm of possibility!   You have been very sick for such a long time, you really do need a Dr who can help you and who you believe in, because I think you've got a long road ahead of you.  Still, w/ proper treatment, maybe you will experience some immediate relief!

I believe you will find a veritable wealth of information here. I was at first so overwhelmed, I was in despair, but gradually, you will feel more and more confident in your searches and your feelings.

We will all be thinking of you and pulling for you!  And since I don't have much time now, I am including everyone on this forum --- I am pulling for everyone!  We ARE going to bust this thing wide open and defeat it!

Posted 9/12/2009 6:29 PM (GMT 0)
Hi Alone&Scared,

Welcome to the forum! I definitely understand the name because most of us have been there. It is overwhelming when you're first learning about Lyme Disease. The members here are very knowledgeable and we will all try to help you.

As for IV antibiotics, it depends on how long you've been sick and how you are responding to the IV med. Usually, insurance only covers IV antibiotics for a month so it is all iffy and depends on what your doctor thinks about the length of time. I'm sure if you've been sick a while and you have neuro problems too, that longer is always better.

As mentioned above, you really need to find a Lyme Literate Medical Doctor, also known as an LLMD. They are the only ones that will consider your symptoms along with your test results. Since you have been sick for so long, it is important to find an LLMD soon so that you can start treatment. I will post some information below for you to help you find a doctor in your area.
You can  email one of our long time members, Ticker at:
[email protected] to find an LLMD in your area. If you'd like more suggestions, you can email: [email protected]You can also go to: www.turnthecorner.org/bod.htm and ask for further suggestions and also get some information about Lyme Disease. 

ILADS is also a great site to find information and learn even more about Lyme Disease and the correct dosages for antibiotics, etc.
http://www.ilads.org/

For even more info, please read the topic at the top of the first page of this forum tittled, "The Basics, Newbies check this out". It will help you get started learning about lyme.
Posted 9/13/2009 4:05 AM (GMT 0)
Thank you so much! I did read some in the newbie section last night. Didn't get too far because there is sooo much info. But that is definitely a good thing.
I know I had a regular Lyme test (whatever that is..just testing for lyme antibodies). And I had a Western blot and some other kind of blot. I was positive on all of them but my nurse practitioner said that the positive could be false so she was sending me to a "lyme specialist." Well, I got all that paperwork and went to get my bloodwork done, only to realize it is the same bloodwork I just had done???? I am so confused about that one. And, I do have to get the Igenix tests and I have to pay cash for those. Unfortunately, I threw away the paper with the prices because I have health insurance. And THEN read that it didn't matter. Wonderful. So, I have to find out again how much those tests will be. Fortunately, I can have my parents help with that cost. (so sad to be 30 and have to have your parents still help you).
I didn't realize that insurance would only pay for 1month of iv antibiotics. That is crazy. Gotta love insurance:)
I mean, Hopefully I will just respond wonderfully to the oral ones. I just don't want to waste anymore time you know? Well, I am sure that you all know what I mean! I don't want to take the oral antibiotics if they aren't going to work and then have to go on IV anyway. I just want to get better.
I am on Lyrica because they thought I had fibromyalgia (and some of my doctors still do) and it helps take the edge off of the pain. But, some days I can barely walk. And my brain doesn't work in a way that allows me to concentrate or remember ANYTHING, but at the same time I feel like I have ADD. That has never happened to me. It is so frustrating and hard and I just can't stand it some days.
I am so glad that I found this forum full of people who understand. I was reading a thing that I found on the internet before I came to this site last night...it was written by a lady who has had lyme disease for ten years. In one part of the story she said that she got tired of having to cancel plans all of the time because she was sick. She had to cancel on one of her friends one night and asked her if she was mad about it. Her friend said that she was tired of her being sick and she just couldn't feel bad for her anymore. Then this lady wondered if that is what everyone else was thinking.
Well, I can relate to that. None of my friends have said anything like that to me, but therein lies the problem. They have said NOTHING to me. They all disappeared. When I used to finally get in touch with them they just said how busy they had been and no time to call, blah blah. But then I would find out that they were out the night or week before with another mutual friend. So, they were all avoiding me. Now they just don't bother to call at all. So, I guess in reality they weren't real friends to begin with, but I am so alone right now it hurts so badly. I mean, I have family and they help me financially. My father helps me every chance he gets, but he lives far away and has to work. The close relatives don't come help me at all. On days when I can't get out of bed...I don't get out of bed.
That is why I got scared about the treatment for lymes. If I get sick and can't get up to go to the bathroom or to get a drink then I just wont get it. It scares the heck out of me.
Sorry for rambling. I have no one to talk to about how I am feeling. Sorry to say...you are going to get earfulls from me! (or eyefulls, I guess) :)
Posted 9/13/2009 4:51 AM (GMT 0)
alone&scared,

I felt like I just wrote the part about the friends. When I first came to this forum, I wrote a big, long story on how a close friend of mine had abandoned me. I was hurt for over a year. The members here helped me so much. I am finally getting over the whole ordeal. I've also lost other friends and family members as well. I don't know what it is. Maybe they don't know what to say or how to deal with us. Who knows but I could never do that to anyone. I've learned that a true friend sticks by you through bad times too. I've actually found great friends here, on this forum. There's nothing like having a friend that has the same disease as you and understands what you are going through. People with Lyme Disease are very humble and caring. I've also made new friends here where I live. People that truly care about me and ask how I am doing all the time. I've reconnected with some on Myspace. I don't get out much so we all talk on the Internet. I've learned to let go of negative and uncaring people. I have a good heart and I am a giver. People like that were not meant to be in my life to begin with. I know that now and I now know what to look for in a friend. You will find that too. It takes time. It took me a while to heal. I was mad at the world....literally.

I am pretty much like you....homebound. I move from the couch, to my bed. It's horrible. I definitely know how you feel. Today I had to get out and cash our tax check. I had to be there because my name is on the check. It took me all I had to push myself to do this. I could barely walk through the parking lot of the check cashing place. I was wishing then that I had a houvaround...you know, those electric chairs. I was serious too.

If you happen to get on IV antibiotics, let your doctor know your situation of being alone. Maybe they can get a home health nurse to go out and check on you and maybe help you out some too.

Not all insurances only cover one month. Some cover longer. I guess it all depends on what insurance you have and what your doctor puts down when he asks for more antibiotics. I will be starting IV Rocephin myself in about 5 weeks. I just got back from seeing a doctor 12 hours away. Long drive but well worth it!

The members here are very caring and supportive. You will learn so much from them. I learned more here in a few months than I had learned the whole year researching. That's another thing you need to do.....research. Look up everything you can about Lyme. You'll be amazed by what you learn and I always say....knowledge is power!
Posted 9/13/2009 6:28 AM (GMT 0)
Sorry your so scared and nervous.. take one day at a time and hang on the forums for a good while to learn learn learn.

CajunGrl is amazing..

CG With all your go through and how sick you are I am amazed how much you can post and help others and give. Your a special person. I appreciate you and all you do. Its people like you that help others so much and help with not only information but caring and love.

God Bless...

If I can help at all please let me know..
Posted 9/13/2009 6:35 PM (GMT 0)
If you go the Lyme route, you'll need to find an LLMD. Many if not most do not take health insurance.

LLMDs prescribe massive doses of antibiotics. Get some probiotics to take as well. Antibiotics have antiinflammatory properties that can alleviate some of those joint pains. But I've been to two LLMDs and neither really gave me much hope about a cure. You can however improve your situation and live a much more normal life. There are worse things out there. (But the lack of credibility when it comes to those of us with chronic lyme disease is enough to drive one to distraction...)

Good luck!
Posted 9/13/2009 7:20 PM (GMT 0)
Alone & Scared,

So sorry that you are suffering all alone like this. I was not sick for very long compared to so many on here, and can only begin to imagine what you are going through. I was only on IV for one month, but was caught before it got out of hand, so I am hoping it was enough. I believe it is possible to do it yourself, so that shouldn't be a worry. The visiting nurse mistakenly put a longer tubing on when she redressed one time, and said that she forgot that I wasn't doing it myself. I take herbs and supplements to help to make sure my immune system stays happy. It sounds like it will be a long road for you, but the people on here are wonderful support, and full of knowledge. Just knowing there are others who are also going through it and thinking and praying for you can help so much!
Posted 9/13/2009 9:10 PM (GMT 0)
Alone & scared,

Hopefully you are feeling a little less alone now. We may not be able to be there in person for you, but we can be there in spirit. wink

Reading about friends who "just can't feel bad" for you anymore really rings a bell, as I'm sure it does for many here. My sister recently told me that "You have lyme disease. Something is always wrong. I don't want to here about it anymore."

If you can, I would look into seeing an LLMD. They will be best able to help you feel better. Unfortunately, most (if not all) do not accept insurance. If you cannot afford one, there are many natural alternatives that can help treat Lyme disease as well.

As for the blood test- it gets in pretty confusing territory, but yes, it makes sense that your Dr is sending you for the same blood test a second time. Non-lyme literate dr.'s believe that blood tests give false positives, and so they will sometimes ask for the same blood test twice, in the hopes the 2nd will be negative. Lyme-literate dr.'s, however, believe that there are false negatives. This viewpoint makes sense, as the standard blood test has been shown to miss 30% of the patients with Lyme disease. So if your second blood test comes back negative- it does not mean you don't have lyme!

Best of luck
Posted 9/14/2009 3:54 AM (GMT 0)
You all have no idea how much you mean to me. I know that sounds crazy because I don't even know any of you yet! But, I was so "alone and scared" (lol) but reading your posts made me tear up. I already feel better:)
I don't know if the doctor that I am being sent to is an LLMD or not, but I have to call tomorrow for prices and am going to ask then. I really hope that this doctor takes my health insurance because my health costs (with insurance) are already so sky high that I just don't know how I would swing any more health bills. But, I will worry about that later!
I am so sad that you have all lost friends (AND family!) over this as well. I mean, it makes me feel less alone, but don't wish that kind of pain on anyone. I can't (as well you can't) help that I am not a happy, upbeat, energetic and motivated person. I wish I was! I wish I did still have a job, and that I didn't hurt all of the time, and that my brain still functioned properly. But, I can't do anything about that and people are just so awful sometimes. I have always been there for these people. Always. I was going to send my one friend an email tonight explaining that I am hurt by her and why; but then I thought..why? We have had these same kinds of issues in the past and nothing ever changes. It hurts so badly to let her go. We have been friends for 17 years. But, she has never ever actually been there for me.
I just have too much going on right now to be concerned with all of this added worry and pain. Of course, that is how it works though, right? It is just so wonderful to have found you all and that you understand. How sad it is that so many people turn their backs on others when they are needed the most. I truly hope that I havent done that in the past. I don't think that I have, but I guess that I didn't really understand the true value of friendship until now.
I have always thought myself a great friend. Being there when needed, listening, giving advice when asked even though it was never ever taken. (we all know how that is!) But, I never asked anything of anyone. I don't know if it was pride or just the fear that they wouldn't help me and then I would know that they didn't really care about me. Now I am in a situation when I didn't even have to ask for the help to find out! They all disappeared anyway.
I pray that God blesses each and every one of you! Let their be a cure in our posession so very soon. I wouldn't wish this kind of suffering on my worst enemy and I know that a lot of you are in worse pain than I am. It gives me a whole new perspective on me, life and human nature.
Thank you so much! You will be hearing a lot from me. Mostly after I see the doctor though!
Posted 9/14/2009 5:01 AM (GMT 0)
Big hugs alone! You will have to change that name because you are not alone anymore.

Good luck with your doctors appointment.
Posted 9/14/2009 6:02 AM (GMT 0)
CajunGrl's right ! You're not alone anymore and we are all sending you big hugs and lots of prayer.

Remember, God hears all who cry out to him. So that makes us never, ever alone. Send me an email if you'd like me to pray with. I would be honored. [email protected].

The IGenX prices are $695 for the Lyme panel and $695 for the co-infection panel. I have Blue Cross PPO as my tier 2 medical insurance. And they covered almost 100%. You just have to send in the superbill from IGenX to your insurer for reimbursement. If you have a PPO it will be pretty easy. If you have an HMO, I would strongly suggest/demand to your doctor that they get a kit from IGenX (in Palo Alto, Ca) then send it back to them.

Try to take notes at your doctor appoitments so you don't forget anything. I take a list of questions, all my symptoms and concerns to my appointments. Otherwise I don't remember anything!


Best of luck at your appt!!
Lisa
Posted 9/14/2009 6:12 AM (GMT 0)
Hi There LRN
I have question about your comment about insurance. You said you have BCBS as a your 2nd teir.. SO do I. But... how can someone send them a bill directly without going through the first insurance?

Or is that not what you meant. I have to do some billing to my insurance for reinbursement and from what I thought I knew I had to send to First insurance.. esp if it is govtn. and then to the 2nd.
I am still learning.. so any information you can share is very much valued and appreciated.. THANKS SO much.!
Posted 9/14/2009 6:12 AM (GMT 0)
PS>
I agree with the Name change : )
None of us are Alone!
But well.. scared!! Thats a different story
Posted 9/15/2009 2:04 AM (GMT 0)
Thanks everyone! I can't change my username or I would!!!
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