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Old 06-14-2009, 06:16 AM   #1
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fibropain48 HB User
Now dx'd w/possible lyme?

What next?
1st it was fibromyalgia, then I tested for vitamin D deficiciency, then osteoporosis, then degenerative joint disease that is attacking me in all different parts of my body when ever it feels like striking any different month of the year. I'm seeing my rheumy dr. who ordered MRI"S of my hip because it hurts to walk. first it started in left hip and then months later it's now in the right hip.
IT feels like there's something horrible going on in it, but the MRI is only showing slight fluid. my rheumy dr thought it might be bursitis because it hurts on the outer upper part of the thigh. walking makes it worst.
sleeping on it makes it worst, etc.
while we spoke over the phone the other day going over the MRI report, she suddenly made a remark about a lyme test she ordered from me months and months ago. At first she told me it came back negative months ago when we first performed it.
NOW she's telling me that on the western blot method, it has one ring, whereas if it's positive, it needs to have two rings, or what ever the term is.
then on the other lyme test that was performed, there's 2 rings that came up positive but you need to have five out of ten be positive.
she gave me a titer level which reads: 1.52
she normal the ratio for normal is: 0-.9
now why on earth would she go and tell me months ago that it
came out negative?
and then NOW she's telling me she wants to put me on
antibiotics, doxyclycline to be exact for a month?
I don't LIKE taking antibiotics unless it's absolutely needed.
so my lyme dx is iffy" so to speak.
she feels it could be lymes causing the host of horrible aches and pains
and lethargia and tiredness, loss of appetite, horrible cognitive and memory problems that's only getting worst and worst over the years.
I decided to take the antibiotics. My dr. agreed w/me that antibiotics
are dispensed at alarming rates for the most minor things such as colds and virus's. virus's can't be treated with antibiotics. so why dispense them for that?
I would like to hear other people's opinions here who might have more knowledge on this subject than I do.
do you think it could be lymes causing the hip problems and
all the other swollen joints in my hands? and when the
dr. ordered my knuckles to be xrayed, nothing showed up!!!
she said that lymes can cause this type of arthritic problems.

I had lymes disease back in the late 80's early 90's, can't recall which.
so did my little girl, my other daughter and other son. it missed the oldest son and my exhusband.
we are living in what the dr. calles "the black hole" for lymes
we have deer walking outside my back door like they're dogs walking around in the neighbor hood.
everywhere I go, like for our walks out on this beautiful trail where I know the deer lay because you can see the impressions left by their bodies when they lay there with the pack.
we walk thru those tall grasses but always check when we get home and take a shower to wash off possible loose ticks that got on us by chance.

what else can I do to deter the ticks from our bodies other than using potent toxic chemicals like "deet"?
Is there anything in a more holistic form that anyone knows of?

I know alot of the people here on the lyme board are suffering FAR worst than I am and I don't want to complain about my little woes.
but I would like others opinions on my personal medical story if possible.
another person on the boards once sent a reply to my post suggesting it sounded just like I might have lymes but I pooh poohed it.
silly me!
I'll never do that again!

thanks for listening....

 
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Old 06-14-2009, 07:12 AM   #2
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Re: Now dx'd w/possible lyme?

Hi Fibropain, Welcome to the board. You like many of us get that Fibro diagnoises. Fibromyalgia is a symptom of something else gong on in the body. We all have different reasons for pain.

If you had "lyme" back in the 80's then you still have it. It doesn't go away.
There are over 300-400 different strains of the Lyme spirokette. This is just one of the reasons testing for Lyme is not accurate. A person "does NOT" need to have a postive test by the CDC to be declared positive.

Majority of doctors do not and will not get involved with Lyme patients. Lyme Disease is a very political disease. I was on antibiotics for 9 years. I have been off of them for the last 9 months. There is too much down talking of a medicine that helps a person to be well. They saved my life.
Funny that doctors don't stop dispensing antidepressants when there are people commiting suicide off of them. They are a mind altering drug. Funny that doctors keep pushing those pain pills when people get addicted to them. I could go on and on.
But then you have doctors pooh long term antibiotics ....anyway...

Lyme is in the syphillis family. It can be spread through sex and also being pregnant with a child. Breast feeding and blood transfussions.
ANY type of biting insect can carry this bacteria.

Have you been tested for Mycoplasma Pnumoniae, Chlamydia Pnumoniae, Erichliosis, Bartonella, Babesia, these are just a few of the other co-infections that insects carry. And testing for a few of these aren't accurate either...

Also have you had your titers for Epstein Barr and Cytomeglovirus and other herpes checked?

Once you have been infected by Lyme and many other bacterias, viruses, ect... they will stay in your system. You can get them to go into dormancy but never rid of them.

You need to get to a Lyme Literate Medical Doctor. A specialist in Lyme. Trust me this is nothing to ignore. And many of the people on the fibro boards have lyme and or other bacterias/viruses and are not being treated for them.

I was also told I had this degenerative bone disease. That I needed surgery. I wore neck and wrist braces cause I was put on tons of other meds. I alsmost wound up in a care home, mental hospital. Bacterias, viruses ect get into the bone and make them weak. I never had my neck fused, never had the carpel tunnel surgery, and now I have no pain and my bones are strong again.

There are doctors in your area that treat lyme. We can not share doctors names on the lyme boards because they are in fear of losing their licenses. If you would like names of doctors please turn on your Private Messaging and or e-mail.
I have a interview from a doctor that treats lyme and is well known. I wish everyone could listen to this.

Doing one antibiotic is not going to help you. And I imagine it is a low dose. The lyme bacteria has 3 stages of life. So you need an antibiotic to kill all 3.
Also one of the main things in getting it under control is to get your immune system up.

You need more help than what this currant doctor can give you.

I hope you can get on the right treatment protocol soon.

Jodie

 
Old 06-16-2009, 02:38 PM   #3
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cindymoon HB User
Re: Now dx'd w/possible lyme?

Hi Jojo. Can you please email me the names of lyme literate doctors in the maryland area?? I would be so grateful.

 
Old 12-09-2009, 10:08 PM   #4
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Re: Now dx'd w/possible lyme?

Quote:
Originally Posted by fibropain48 View Post
What next?
1st it was fibromyalgia, then I tested for vitamin D deficiciency, then osteoporosis, then degenerative joint disease that is attacking me in all different parts of my body when ever it feels like striking any different month of the year. I'm seeing my rheumy dr. who ordered MRI"S of my hip because it hurts to walk. first it started in left hip and then months later it's now in the right hip.
IT feels like there's something horrible going on in it, but the MRI is only showing slight fluid. my rheumy dr thought it might be bursitis because it hurts on the outer upper part of the thigh. walking makes it worst.
sleeping on it makes it worst, etc.
while we spoke over the phone the other day going over the MRI report, she suddenly made a remark about a lyme test she ordered from me months and months ago. At first she told me it came back negative months ago when we first performed it.
NOW she's telling me that on the western blot method, it has one ring, whereas if it's positive, it needs to have two rings, or what ever the term is.
then on the other lyme test that was performed, there's 2 rings that came up positive but you need to have five out of ten be positive.
she gave me a titer level which reads: 1.52
she normal the ratio for normal is: 0-.9
now why on earth would she go and tell me months ago that it
came out negative?
and then NOW she's telling me she wants to put me on
antibiotics, doxyclycline to be exact for a month?
I don't LIKE taking antibiotics unless it's absolutely needed.
so my lyme dx is iffy" so to speak.
she feels it could be lymes causing the host of horrible aches and pains
and lethargia and tiredness, loss of appetite, horrible cognitive and memory problems that's only getting worst and worst over the years.
I decided to take the antibiotics. My dr. agreed w/me that antibiotics
are dispensed at alarming rates for the most minor things such as colds and virus's. virus's can't be treated with antibiotics. so why dispense them for that?
I would like to hear other people's opinions here who might have more knowledge on this subject than I do.
do you think it could be lymes causing the hip problems and
all the other swollen joints in my hands? and when the
dr. ordered my knuckles to be xrayed, nothing showed up!!!
she said that lymes can cause this type of arthritic problems.

I had lymes disease back in the late 80's early 90's, can't recall which.
so did my little girl, my other daughter and other son. it missed the oldest son and my exhusband.
we are living in what the dr. calles "the black hole" for lymes
we have deer walking outside my back door like they're dogs walking around in the neighbor hood.
everywhere I go, like for our walks out on this beautiful trail where I know the deer lay because you can see the impressions left by their bodies when they lay there with the pack.
we walk thru those tall grasses but always check when we get home and take a shower to wash off possible loose ticks that got on us by chance.

what else can I do to deter the ticks from our bodies other than using potent toxic chemicals like "deet"?
Is there anything in a more holistic form that anyone knows of?

I know alot of the people here on the lyme board are suffering FAR worst than I am and I don't want to complain about my little woes.
but I would like others opinions on my personal medical story if possible.
another person on the boards once sent a reply to my post suggesting it sounded just like I might have lymes but I pooh poohed it.
silly me!
I'll never do that again!

thanks for listening....
Just read your post and I would trust your doctor and try the antibiotics. My daughter was diagnosed this year after years of trying to figure out what was going on with her and numerous doctors and tests. She has been on oral antibiotics and is now on IV antibiotics and is finally seeing some improvement. She had no idea she was bit and we don't even know how long ago it may have been. The tests for Lyme are notoriously inaccurate. She was tested many times and they came back negative. Her doctor ran a test through a lab in California called IGENEX. They look for more strains of the bacteria and the DNA and are somewhat more sensitive than the normal Elisa and Western BLot tests. YOu must pay up front because they do not accept insurance unless you are on medicare and then get reimbursed by your insurance company. But she finally got her positive results from this test and began treatment. Many of her other tests for RH and Lupus came back negative and too many others to list right now. She also has difficult with memory, brain fog, migraines, numbness, tingling, dizziness, pain everywhere, fatigue--the list goes on and on. There are some dangers to too many antibiotics but they can also work wonders and if it is Lyme, it's the only thing that will help you. If it were me, I'd take the antibiotics and not for just a month if these symptoms have been around for a while. I would bet if you take them for a month, once you stop, the symptoms will return and you'll feel even worse. Check out the CALDA website. It's a Lyme group in California that is loaded with information and the ILDSA also. Be sure your doctor follows their guidelines and not the guidelines set up by the IDSA (which are under review right now due to antitrust issues). The IDSA and CDC have guidelines that are to confining and they do not believe the chronic lyme exists and that a longer course of treatment is necessary when there are studies and patients that are benefiting from longer treatment. I hope this helps in your decision.

 
Old 12-11-2009, 07:06 AM   #5
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Location: N.H., USA
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lymemom2 HB User
Re: Now dx'd w/possible lyme?

Hi, I wrote on another post about having 2 protein bands positive on my test and that combined with a history(exposure and symptoms) is enough for a Lyme Literate MD or LLMD to do a trial of antibiotics. If you have had Lyme for a long time its not likely to get a perfect Western Blot (5 or more). Lyme definetly causes a Lyme arthritis especially if you have had it a long time. Mine doctor does 6 weeks of antbiotics to be sure to have antibiotics present when the bacteria leaves the cell to reproduce. That is when it can be killed. If you have Lyme, you will have a Herximer response in which you will get really sick from the bacteria die off. You may stay about the same, but won't feel better unless its not Lyme. I hope this helps!

 
Old 12-11-2009, 07:13 AM   #6
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lymemom2 HB User
Re: Now dx'd w/possible lyme?

Thats a really good point about the antibiotic "trial" of 4-6 weeks. If you have it, the treatment should be long term. I did oral antibiotics for 3 years and slowly improved. Then I saw a specialist in NYC and went on IV and had treatment for a co-infection and improved dramatically(in comparison to what I came from). I still take oral and will be having Bicillin shots soon. It can be a long haul depending on the infection.

 
Old 12-15-2009, 11:31 PM   #7
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Re: Now dx'd w/possible lyme?

Yeah, like they say. See my reply to thread "Can this be lyme? Help!". Antibiotics aren't that bad, and can save your LIFE. Do you want to be in pain, crippled, unable to work or care for your family, and have organ failure or your veins fall apart after a painful decade or two? Or do you want to LIVE?

Last edited by moderator2; 12-16-2009 at 07:49 AM. Reason: please do not post websites except as described in the Posting Policy

 
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