posted
First, I was dx with Lyme, most likely about two weeks after being bitten. I got the bulls-eye rash/flu symptoms. Ok, so I decided to stay with my family doctor for now. I know people don't agree but I basically have no money or time to take off work to see someone else. After speaking with her, I felt confident that she would listen to me if I had any problems with treatment/symptoms. She did increase my doxy to 400mg/day.
So, my question is this. She had told me that she didn't want to test after I am done treatment. I'm not sure why. I've read that test results can give a false positive/negative, so maybe she just believes that it would not do any good. Anyway, I was just wondering if people here thought I should push for a test after I've been done treatment for a couple/few weeks.
Posts: 20 | From PA | Registered: Jun 2010
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posted
in my experience, you will prob. test negative either way, esp. since you started treatment.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
There is no test that can rule out Lyme disease.
The existing tests look for antibodies, which your body could still produce after recovering, so even if you are well, the test could be positive.
However, the tests are inaccurate and frequently come out negative even when you have the active disease.
A couple of weeks of treatment is not nearly enough to get rid of it.
You really need an expert LLMD to continue to treat you until you are better, which is to say, until you have gone multiple months with no symptoms at all.
The cost is high, but it will cost you more if you are sick for a much longer time, or if you get so sick that you can't work, and the sooner it is treated, the easier it is to recover.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
If you got the bulleye that is a positive. Also Lyme Disease is a "clinical" diagnosis. You should be treated based on your symptoms and not a test result. Test can only be used to back up the clinical diagnosis.
Not to burst your bubble, but I highly doubt you will find a non lyme literate doctor willing to treat you appropriately. It just doesn't happen!
Good luck to you!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Again, I didn't ask any opinion about a LLMD. I am sick and tired of hearing it. I believe I made it very clear that I considered the option and for ME it is not possible. I calculated the risks that I am getting the treatment required to make a full recovery with the amount of money I would put into paying another doctor. If anyone here can honestly say they think that I will not, I call BS! You know **** well if it is caught early it is very treatable. You said yourself it is a clinical diagnosis. I understand that. I have had no symptoms since my visit to the ER with the bulls-eye rash, I am on anti-biotics, the recommended dosage/time period.
** no cursing on Lymenet please **
[ 06-28-2010, 12:13 PM: Message edited by: Lymetoo ]
Posts: 20 | From PA | Registered: Jun 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I think that if you treat 6 weeks PAST the last symptom, you should be fine, according to what's in Dr. B's guidelines.
You're stuck going by symptoms, there is no test to tell you whether it's gone.
For example, if you have had chicken pox, you always have the antibodies .... same with Lyme, it's an antibody test. It could show positive for years. I've been in remission for one year this August and still have positive bands show up (my new doctor insisted on testing me).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
That's kind of what I thought. I like gambling, but not with my life and that is what it feels like trying to deal with this.
Posts: 20 | From PA | Registered: Jun 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
As you say you are gambling with your life and thats the only reason that people here are trying to guide you to the right place to help you get over this illness.
We don't recommend LLMDs out of spite or anything; but because most of us have been down the route of trying to get other doctors to help us. Many of us spent years trying to get that help and then ended up in the office of a LLMD way sicker than we were to begin with.
Just didn't want you to think we are being mean by telling you this.
Glad you caught it early. Hopefully your doctor will treat you for a couple of months to be on the safe side. If it were me, I wouldn't treat less than that.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Here's hoping you can have a solid and long lasting remission.
True, no further lyme test is necessary. Lyme testing just doesn't work that way. Even if you have future flares, (as there is no "cure" - no testing is really ever necessary again - for lyme. The history of the bulls eye rash and symptoms are verification enough.
Glad your family doctor increased the dose of doxy. Hopefully, she has read the ILADS literature so that she can provide adequate treatments.
Hopefully, your family doctor is also addressing the cyst form of lyme and biofilm issues so that you have a better chance for a solid remission.
Also, I hope your family doctor assessed for the full range of tick-borne infections. That will also help you get the best remission possible.
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
- Full article at link above, containing MUCH more detailed information.
---------- Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
As others have said, no testing is necessary or useful at this point except co-infection testing. Many do get co-infected with a myraid of other infections when bitten by a tick.
From what I've read and from what I've seen here, if you have a co-infection/s and they are not treated appropriately, the chances that you won't have a relapse are probably remote.
If you start out with lyme and co-infections and don't get treated for them all, you will likely pick up even more infections along the way due to a depressed immune system.
Hopefully you are one of the lucky ones. If not, we'll no doubt see you back here months or years from now except that your condition will be much harder to treat by then.
People here just want to keep you from getting as sick as we are. Live and learn...
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Again, the condescending tone used here is absolutely unnecessary. I have done A LOT of research. Obviously been told to see an LLMD. I made it very clear that I considered the option. I will consider it again if I need to. If you want to pay for my doctor, or explain to my work why I need more time off, then please, be my guest. I just cannot justify when I have doctors/nurses telling me that the treatment I am receiving is sufficient.
Posts: 20 | From PA | Registered: Jun 2010
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massman
Unregistered
posted
"I have doctors/nurses telling me that the treatment I am receiving is sufficient"
Those docs and nurses are UNEDUCATED.
Condescending ? A bit. You are saying you have done research ? No references to the massive amount of lyme illiteracy in the medical field ?
posted
Yes. I have done research. I understand exactly what you are saying. I've been reading on here since I found out what I had. When I say that I CANNOT go to an LLMD, what good do you think it does to have 5 people post condescendingly about me not being ABLE to do this. It won't change the fact that I CANNOT. It seems to me it would be a lot more beneficial to offer what help is possible, or maybe answer a simple question, which was done in the thread and I was quite happy with and figured that was exactly the answer I would get.
Posts: 20 | From PA | Registered: Jun 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry if I came across as condescending. That was not my intention. As I said, people here are just trying to prevent you from going through the he!! we have been through.
I've been disabled for 20 years with this. My career that I worked so hard to put myself through college for, is gone. The suffering has been horrendous and my life and health have been altered forever.
Even now, after vast improvement due to proper treatment, a number of doctors tell me I'm wasting my money. Going from thnking about ending it all to at least getting some enjoyment out of life is hardly a waste of money!
We are dipping into our retirement fund to get proper treatment. I'd sell my house if I had to now that I know how horrific this illness can get.
I truly hope you are one of the lucky ones who never has to worry about this again.
Best wishes to you. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Just about everyone on here has been where you are at some point. We've all been angry about this ridiculous situation that results in effective treatment being nearly inaccessible for our illness.
Most of us have learned the hard way that the limited "help" we might get from non-Lyme literate doctors is insufficient at best, and possibly harmful.
Too many people on here have wasted years of their lives and a lot of money going to unhelpful doctors or trying unsuccessfully to treat themselves.
The only reason people keep expressing the same opinion to you so strongly is the desire to help you avoid the problems they have been through. Nobody is trying to make you angry or be disrespectful. We just want to help.
I thought it was impossible and ridiculous that I could take several days off work, drive 9 hours each way, and pay out of pocket to see an out of state doctor. Then I realized that my regular doctor could not help, other doctors would not, and the disease will get much worse if untreated.
When it dawned on me that I could end up bedridden with a serious brain infection, and unemployed and without insurance, if I didn't get proper treatment as soon as possible, I decided I would have to borrow money, ask family for help, take some days off work (giving up all other vacation and sick days to manage it), and do whatever else I could to start getting better.
The cost to me, if I didn't get treated and continued to get worse, would be that I could lose everything and end up completely dependent on my family.
People also spend staggering amounts of money on non-Lyme literate specialists and tests for illnesses with which they are misdiagnosed after Lyme is mistakenly ruled out, which does nothing to improve their condition.
I was determined to avoid the time and money-wasting runaround, not to waste money on drugs that merely masked symptoms but didn't address their cause, and to preserve my ability to work if at all possible, so I found a way to see an LLMD.
I finally found someone who knew all about what I have, and offered me real help. After several months of treatment, I am improving.
I have been sick for over a year now. It took me 6 or 8 months and a relapse to realize that this was not going to be a short-term illness that would be easily treated.
I had to wait several months for the LLMD appointment, and prior to that, my antibiotics ran out, so I took some of the herbs described in Stephen Buhner's book "Healing Lyme."
They did not help me as much as the antibiotics have, but I only took them for a short time. They are quite expensive when you add them all up, but you don't need a prescription to get them. That is one of the things you could try on your own if you don't have an expert Lyme doctor.
You may not agree with any of our advice, but please don't be offended with the people who are honestly sharing our experience with you from nothing more than a desire to see you get better.
Best wishes for your recovery.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I sure didn't mean to sound condesending and sorry if you took it that way. I don't really see anything condesending in this thread.
Its a little condesending that all of us have been so very ill and yet you think that it couldn't happen to you.
I lost my job 4 years ago due to this horrendous illness. Had to take out some of my retirement to pay for treatment. But money is nothing anyway without your health!
Everyone here is just thinking about your best interest. We have all already traveled the road you are on now. We know that if your treatment is insufficient that you could possibly be in for years of long term debilitating chronic illness. LD is a very serious awful disease! You seem to be taking it very lightly.
I will ask you this. If you had cancer would you seek out a cancer doctor? Its the same with LD. Only a lyme doctor knows how to cure this stuff.
I hope you are one of the lucky ones that treats for a month and goes on about their normal life. It would sure be sad for us to see you back here in a few months or years!
I wish you the very best!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
The thing is, no one is looking at it for it's situation. I got treatment most likely within 2 weeks of being exposed. The chances of it being cured with the antibiotics are very high. Most people here did not get treatment early, or even know they had it. I understand there is a possibility that it will resist and I will have a relapse. I KNOW this, so I can deal with it again as soon as possible IF this happens. I do believe this is highly unlikely. The fact that I have researched it, I know that I need to be on the look out for a relapse, so I will be extra vigilant for any signs. My concern is with the co-infections. I do have a call into a doctor referred to me in the area to see what information I can get from him from a phone consultation for now. Someone else also e-mailed me an LLMD in the area that does accept my insurance. Although, I am not happy with all of the reviews, it's better than what I do have.
Believe me, I am not discounting any advice I receive.
Posts: 20 | From PA | Registered: Jun 2010
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massman
Unregistered
posted
What are the specific reasons that you can not go ? We may be able to help you in ways you have not considered yet.
Some here have been in pretty tough spots here and have found solutions.
My concern is you are listening to brainless heartless ______________ (fill in the blank).
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posted
My point is, I already know all of this. I specifically said I was not asking about an LLMD. I had a specific question I was seeking help with. Either help with what i ask, or don't. Don't jump all over me with unsolicited advice that I have already received.
I know it could happen to me. I also know there is a good chance that it will not. Like I said before, I cannot afford to spend money and time on this when there is a good chance that what I am doing already will cure it.
I said my doctor increased the dosage to the recommended 400 mg. We are going to discuss doing another round, as she only did 3 weeks, but I indicated to her that I would like to do 6 weeks, which is the recommended amount of time since I have not had any symptoms at all since the initial rash/fever. now, if she doesn't agree to this, then I will have a problem and I will deal with it.
Other than that, talking to LLMD about co-infections is what I can do right now. After I talk to him, I will ask my doctor specifically what was tested at the ER, as I never saw the tests myself.
Posts: 20 | From PA | Registered: Jun 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Honestly, IMO, I think you're doing the right thing. You are having no symptoms so I know my LLMD wouldn't treat based on that except for maybe the six weeks of doxy.
Take the six weeks. No further testing needed. If you start having symptoms again, THEN you may need to find a way to see an LLMD OR see if your current doctor is willing to learn more about treating Lyme and see if he's willing to treat more long-term.
You caught it early. If you nip it in the bud, the coinfections, theoretically, will not have time to take hold. I have heard Dr. B in a talk say that coinfections take hold due to the affect of the Lyme on the immune system, and that in the early days of Lyme treatment, they only treated the Lyme until the immune system itself resolved the coinfections, thus treatment was years longer than it is now.
You also have to recognize where many here are coming from. We got screwed over by the uneducated doctors out there and got much, much sicker than we needed to. Please excuse everyone from trying to educate you in the importance of an LLMD. For now, you're doing enough. If you stay well after six weeks, then you did enough.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Not to stir up more controversy/trouble but in the years I've been hanging out here, I've seen quite a number who got treatment within weeks or even days of being infected and they are chronic. NOT to say you will be but it happens.
I'm sure there are many variables that determine the liklihood. Number of infections is a huge factor but then so is strain of borrelia, your immune system, your ability to detoxify and so many other things. Even subtoxic levels of mercury from amalgams can make it difficult to get rid of borrelia according to a 2007 study on mice.
No one knows for sure if co-infections go away on their own with early treatment in the majority of people but there are some LLMD's who think that certain co-infections are just as immune suppressing as borrelia. I don't know who is right.
I'm relieved to know that you will be alert to symptoms coming back and deal with them as they arise. I see where you had symptoms to begin with but apparently they are gone now which is a good sign. I've read that it's a good idea to treat 2 months beyond when your symptoms disappeared.
I hope we never see you back here again but rest assured if you need us, someone will be here to help.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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