posted
I'm fairly new to this chat, so hello everyone : ) Recently the doctor told me that I tested positive for Lyme Disease but then told me the confirmation test came back negative. My symptoms have been, the rash, joint pain and swelling, severe muscle aches, headaches, neck ache, sweats. One of the first tests showed that there was a slight inflammation due to some infection but since retested that's gone down. She told me that she was going to treat it with antibiotics for a month, but then has now changed her mind and doesn't think that I have it but that I must be starting to go through the change of life. She doesn't believe there is anything infectious going on for me to have all of these symptoms. Now, I'm confused, first she tells me that I've tested positive, and now she tells me that there's no reason for all of my symptoms and that I'm going through "the change." I definitely have to seek out a LLMD and soon.
Posts: 20 | From Springfield, MA USA | Registered: May 2005
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
I treated lyme, babs and bart for 2 years, then started going into perimenopause..and let me tell you the symotms are EXACTLY the same! ONece i started taking hte pill for hormones I've never felt better..all my 'lyme ' sysmtoms incluidng night sweats, dizziness etc..are all gone and I feel great!
maybe it's the same for you ??? I"m 46...I was even having what's called catmenial seizures at ovulation and the time of my period ffrom high levels of estrogen..this is common with many women going throgh peri.....thought it was still bart...
anyway, it was peri for me...who knows?? I feel great now..
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Newbies List 05/18/05
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
posted
I suppose you could do a hormone trial (OB/gyn?) to see what it does with symptoms, but I would not rule out lyme either. The approved testing procedure (the 2 step process) isn't much good and the fact that one of those tests was positive would make me keep looking into this.
Another problem is that ticks carry multiple germs, and a doc that is up on these diseases would have checked you for more than one disease, which indicates your current doc is not one of the best informed.
How long has this been going on? If it is an early case, then you have a window of opportunity to knock this thing out. Really important to catch it early.
Posts: 8430 | From Not available | Registered: Oct 2000
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Wow.....my first thought was "run, don't walkto your nearest LLMD"......then I read lla2's response and had to rethink. Lla2 is one of the best informed around here (IMO).
Still, I wonder how you could have the SX and the rash and not be infected. I still would seek an LLMD and treatment for lyme. Remember lla2 treated with abx and then did hormones.
I just don't think your Sx are all due to peri-menopause. True, it can be confusing to sort out symptoms. I would just be careful of assuming this is all one thing or the other. A good LLMD will be able to help you figure out the problem and the treatment.
PS I am 44 soon to be 45 women also and wonder about night sweats being babs or perimenouase as well. Still treating lyme and coinfections and getting better.
posted
WOW.....I can see that this will take me awhile to read all of this info. Thank you so much.
Posts: 20 | From Springfield, MA USA | Registered: May 2005
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posted
I distinctly remember the date of the rash because I had just gotten back from the hospital in Boston where my daughter had her shunt revised (she has spina bifida) and that was April 13th; so yes this is relatively new. The symptoms first started out with bodyaches, like the kind you get when you are getting the flu..only worse. It was just a very heavy bodied feeling, then my feet and hands swelled up. Gradually, as the days went by, I noticed joint pain, deep in the bone feeling pain, muscle weakness, muscle pain and extreme fatigue.
I saw the doctor within two weeks. They took 7 vials of blood and tested for a variety of things. Diabetes, Lukemia, Rheumatoid Arthritis, Lupus, Hepatitis C, Hepatitis A, Hepatitis B, and Lyme Disease. It was that first test they did with Lyme that came back positive but when they did the confirming test, it came back negative.
I saw my doc again on May 10 when she gave me the news that the first test came back positive, but she was going to test it again and if came back the same she would start the antibiotics for 4 weeks; and from everything that I've read, that is not long enough. This time, she added HIV onto the list of tests to be run in addition to the Lyme test.
On May 17, I saw her yet again. Complaining of severe headaches, stiff neck, shoulder pain. My sweats are not during the night, but during the daytime. The swelling in my hands and feet comes and goes, although the joint pain and muscle pain remains constant.
From what she can tell, there is nothing infectious going on that gives a reason for all of my symptoms; hence she said I must be premenopausal. There is one more test result that is pending, but she doesn't feel it will show anything.
Posts: 20 | From Springfield, MA USA | Registered: May 2005
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quote:Originally posted by Kara Tyson: OMG...you're kidding..LOL...unbelieveable what some doctors must think eh?
I actually keep a list of what patients were told was wrong for them. Menopause is way up on the list.
My list has everything from "go home and get pregnant" to instructions on how to give your husband oral sex--to make you feel better.
Posts: 20 | From Springfield, MA USA | Registered: May 2005
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
I didn't mean to confuse you here. I was treated for lyme and coinfections for 2 and 1/2 years..you do need to find a good llmd.
I just meant that after all htat treatment mine then turned to perimenopause adn I would still be treating the same symtoms had I not throught of peri....now I feel great...
but rule out lyme first, especilaly with your rash etc...every other symptom you mentioned though, including the headaches, nedchache , sweats, joint pain , muscle aches etc...I have had with peri and are now all gone..I also had severe dizziness as well...peri!!easy to see how other things can be confused.
but i did have lyme first and NEEDED to be treated....so see a good llmd.
Lisa
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
Thanks for clarifying that, Lisa, because I will say what lou wanted to Run, don't walk to your nearest LLMD!
You had a rash [EM?] You most likely had a positive ELISA [rare indeed!] and then perhaps a Western Blot that the dr didn't know how to read. I say LYME all over the place.
Can you post the results of your Western Blot? [ask them to fax it to you] There are certain bands that if they showed up, you have Lyme indeed.
And yes, hormone testing is important. Once my LLMD balanced mine, I felt alot better. But you need antibiotics NOW.
posted
Your doc isn't Lyme Literate. Find a LLMD who will know that the Lyme is a clinical diagnosis and one negative test does not mean you don't have Lyme.
Find a LLMD.
b
Posts: 210 | From lalaland | Registered: Jan 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
You could of course have both issues going on. The rash and positive results for lyme and your age for peri.
That said, all my perimenopause symptoms(maybe lyme)(my hormones were fine) are gone after two years of treatment for lyme and co-infections. I'm 49 and haven't felt this good in 6 years.
THe low carb diet for lyme/abx is also useful for perimenopause. If after evaluation you have both, many of the lifestyle/diet changes needed will be benifical for both issues.
beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
At 46 I was told the same thing - perimenopause. When I started passing out and getting strange rashes and eventually went into anaphylactic shock, a different doc tested me for Lyme. Voila, I started treatment and all that "change of life stuff" disappeared. My first doc still, to this day, thinks it is in my head and in my hormones. So, I have my hormones tested periodically. He is wrong.
I agree with Mel, could be both. Get re-tested and/or just start treatment and see how you do. You had the rash - isn't planer than day than that.
Lots of good info in these responses. Just shows how complicated it is dealing with these Tick-Borne Diseases (TBDs).
In my case, the menopause symptoms ended when I was diagnosed & treated for Lyme & Babesiosis.
I'm not a dr, but my opinion - Get copies of your lab work right away. Sometimes these have a way of getting lost.
Your first test (positive) was probably the ELISA. The LDF brochure says "Titer (ELISA or IFA): About 36% of culture-confirmed cases remain seronegative during infection." Since yours was positive & you have typical symptoms, this should be enough evidence to diagnose LD.
The second test (negative) was probably the Western Blot. If all the bands were not reported and/or the dr did not know how to read the results, this could be a false negative.
The LDF brochure gives a list of lots of reasons for "false negative" test results. Only 2 reasons given for "false positive".
If you post the results of your Western Blot here, you could get some valuable info on what the reported bands mean.
The earlier the diagnosis & treatment of Lyme, the better the results - but ONLY IF the treatment is adequate (strong enough & long enough).
Go to Seeking a Dr here on LymeNet & put your location in the title. Make an appt with a LLMD as soon as possible for an evaluation.
On the left, click Support Groups for your state & surrounding states. Good source of references for LLMDs. You need a dr with a lot of satisfied Lyme customers.
Print "Diag Hints & Treat Guidelines..." at www.ilads.org/burrascano_1102.htm It's about 32 pages of excellent info written by one of the best LLMDs. pages 16-18: Antibiotic choices and recommended doses & length of treatment
You could show this to your dr & see if she would treat NOW according to Dr B's Guidelines.
If not, take it with your "positive test results" to another dr & try to get treatment started.
Some people have gotten Lyme treatment at Doctor's Care or similar walk-in drs' office. I would consider this only a temporary measure. You need to have a LLMD in charge.
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