posted
I have been experiencing symptoms of LD for 3 weeks now. I've been to the Dr. and she has tested me for other things but not LD. All test have come back neg. I'm not in lots of pain, just achy in differant places. But today my aches don't seem as bad. I have a Dr. apt today and was going to talk with her about LD, but now that I'm feeling a bit better I'm tempted not to go and to think I'm getting better. Does LD come and go as far as the symptoms are concerned? Could I have LD even though I'm feeling a bit better today? Thank you!
Posts: 29 | From North Carolina | Registered: Jul 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Ups are downs are characteristic of Lyme. If you've only had it three weeks, now is your chance to treat so you don't become a chronic lyme case.
I'm afraid most doctors will not be open to hearing about Lyme. Check this out - www.underourskin.com
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Yes, this is very normal with Lyme. Some days I feel no symptoms and others I feel all of them.
What are your symptoms?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
It all started with a headach and fever, then my lower abdom. and lower back started aching, then my legs. Now I have joint pain that one min is in my knees, then my ankles, then my hands. My hands have been hard to move for the last week. The week before I could barely walk, not because it hurt though, it was just hard to move my legs, some people don't understand this because it's very hard to explain. I've been running a low grade fever for 3 weeks now, although i don't wake up with it, it develops as the day goes on. I've had burning sensations in my feet, I felt like they were on fire. Right now I'm feeling this heaviness on my chest that once agin is hard to explain. Nothing hurts bad, but I just know that something isn't right. I also get these funny lip twitches every now and then. I have a Dr. apt this afternoon, I'm not sure how she will react to lyme Disease. Thanks for the feedback!
Posts: 29 | From North Carolina | Registered: Jul 2010
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posted
Is it common for a fever to come and go through out the day? What about White Blood count? has anyone had a low count and then had it go back to normal?
Posts: 29 | From North Carolina | Registered: Jul 2010
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posted
Get treated now! Lie and say u pulled a tick off you so your doctor will take you seriously of you need to. If your doctor doesn't keep looking until you find one who will.
Posts: 60 | From NJ | Registered: Jun 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Sounds like Lyme. You need to work fast.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Brandi, I've PMed you with the name of a Dr. in Cary who follows the Dr. B treatment guidelines. I highly encourage you to make an appointment ASAP. Dr. does igenex testing which is state of the art for lyme.
Best of luck and please post or PM me if you have more questions.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I encourage you to do the same thing.
Yes, the symptoms come and go. I thought I was coming down with the flu in the middle of summer, then something else would hit me. It often cycles about every 4 weeks. It can seem totally unrelated. I also had back and leg pain. That went away, only to come back a year later. I got headaches and dizziness. My eyes became very dry and irritated. You can't imagine all the things I was misdiagnosed with, no one putting it together.
The first course of treatment is usually doxycycline which is a very safe drug (just watch sun exposure and eat when you take it). It has been given to teenagers to fight acne so if a doctor has no qualms about giving it for months to treat blemishes, you needn't worry about taking it to kill a serious infection.
If you herx while on it, that confirms lyme. It is one way to determine if you are infected. Don't wait for test results, just treat to see your response. If you get much worse (herx) or much better, then you have it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
My Dr. ordered the lab work. She ordered IgM and IgG. She wrote me a prescription for Amoxicillian. She told me to go ahead and start it and to finish it even if the test is neg. Will that be powerful enough? She did say that if the lab results show that I'm have stage 2 (can't remember exactly how she worded it) then she would refer me to a specialist.
What does herx mean?
What if it's negative? Will the Amox. get rid of it?
Posts: 29 | From North Carolina | Registered: Jul 2010
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posted
It takes between 2-3 weeks to get Western Blot results back.
A herx is a worsening of symptoms caused by the bacteria dying off.
You can't count on a blood test only to diagnose lyme disease, you could very well have a negative result and still have lyme, it can/should be diagnosed clinically also even with a negative result on the western blot.
Posts: 448 | From minnesota | Registered: Feb 2010
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posted
I have had MANY symptoms that come and go even months into treatment.
Posts: 448 | From minnesota | Registered: Feb 2010
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onbam
Unregistered
posted
They do. Please post in seeking a doctor and find one known to us to be Lyme-literate, as there is a coverup in medicine about this and most doctors thus have no idea how to treat it.
Check out underourski.com lymecryme.com undertheightball.com
Is this a new infection? If so, you need to do WHATEVER IT TAKES in order enable yourself to take 400mg doxycycline/day for 3 months past the point at which all symptoms resolve. The alternative is an incurable, contagious brain infection. multiple drugs--a cell-wall inhibitor, an intracellular drug, and an anti-spore agent will probably be needed. If you've had a bullseye rash or any sort of positive test--that is definitive proof. Don't believe a negative, as the tests that we've been all)owed to have are only 30-50% sensitive (as described on lymecryme, good tests get withheld from us.) www.lymeinfo.net/medical/LDSeronegativity.pdf
in addition, i might treat with these herbs, or at least banderol. (another researcher martin sievers, concluded that samento made things worse).
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Some researchers think it can take 3 mths. for antibodies to form for Lyme.
And then there is a window of pos. before the stealth of the bacteria kick in to hide it so well.
I too would seek the Doxy. and see a LLMD to help.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Mine has done the same thing since I got sick 14 months ago. It comes and goes on different days, moves all around my body (sometimes for minutes or hours or weeks), and I feel good in the morning and get worse as the day goes on. Some people are worse in the morning and get better in the afternoon.
The fact that your illness is behaving that way is a likely sign pointing to Lyme.
You should take the amoxicillin from your doctor, but it will not be a high enough dose nor a long enough course to help you. You need to get diagnosed clinically and treated properly by an LLMD who has the experience treating other Lyme patients until they are well.
Other doctors will either make you worse, refuse to help, or wish to help but will not have the knowledge needed to do so effectively.
Lyme does not go away without treatment. The symptoms can come and go, and it can go dormant and then relapse again. The earlier you get treated, the better chance you have at getting into permanent remission.
There is no test to tell you that you DON'T have Lyme. If the test is positive, and you have Lyme symptoms or a tick bite, then you do have it. If the test is negative, then it means nothing, and if you have Lyme symptoms, then you probably have Lyme. An LLMD has the experience to interpret your symptoms and history to figure this out.
Different people get different symptoms because their bodies react differently, there are different strains of Lyme, and people may have different coinfections (other bacteria, parasites, etc. that came from the same tick bite). Lyme also lowers your immune system so that any dormant viruses in your body may suddenly become active. It also causes symptoms that are often misdiagnosed as autoimmune, but they go away with successful Lyme treatment.
The best complete introduction to Lyme and all the medical and political complications is the book "Cure Unknown" by Pamela Weintraub. There is also an excellent video called "Under Our Skin" www.underourskin.com about the experience of Lyme patients, that is informative, and also helpful to show to friends and family to try to explain to them what Lyme is and some of the issues about Lyme.
If you have it and don't treat it, the symptoms can get very much worse in the future. Don't be fooled by some good days into thinking that it's gone.
Lyme also has a natural cycle, affected by when it reproduces and possibly by your hormones or other factors. Some people have symptom flares every 3-4 weeks, with better days in between.
There is also a reaction called a "herx." This is when you take antibiotics, they kill some Lyme bugs, and that releases a lot of toxins at once into your body, so within 3 days to 4 weeks of starting an antibiotic, you suddenly feel worse. This is actually another sign pointing to Lyme, but some people mistake it for a drug reaction and just stop taking the drug (and leave the Lyme untreated). An LLMD can help you tell the difference between a herx and a drug reaction.
Good luck to you, and please take care of yourself. You have an excellent chance right now of being spared the years of suffering that some people on this board have gone through, if you get the right diagnosis and treatment from the beginning.
-------------------- 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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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Be sure you go to an LLMD rather than the "specialist" she will recommend. The "specialist" will be an ID doctor who will most likely not treat adequately.
LLMD's are not usually covered by insurance, so you don't really need the referral. Your meds can still be paid by insurance even if you have to pay the doctor bills.
Amoxy is a good drug, but is usually under-prescribed. To give you an example, I took 7500 mg per day plus probenecid to keep it in my blood stream longer. Yes, 7500, that was 2500 mg three times per day .... or 15 capsules! AND I was taking other meds with it!!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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