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» LymeNet Flash » Questions and Discussion » Medical Questions » Someone please help me figure out what is going on with me!!!

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Author Topic: Someone please help me figure out what is going on with me!!!
aubsdaddy
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Member # 21128

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Here is my story. In 1995 I moved from philadelphia to bucks county, pa (a very high tic infested area)

I was bitten by a tic in 1995 and developed target marks on my backs and other parts of my body.

I felt very fatigued, in pain, swelling, night sweats, loss of interest in everything i used to enjoy in life. I used to be athletic: football, baseball and hockey. I completely lost interest in all of those and did not want to do anything but sleep.

My family doctor in 1995 who originally diagnosed me with lyme disease gave me amoxicillin for 30 days and said that it would be cured.

A few weeks went by and my mother had taken me to the hospital a few times because I was still feeling the same way. I tested positive for Lyme but the doctor at the hosptial told me that once you have lyme disease that it will always show up in your blood.

I went on with my life always feeling that way and eventually turned to drugs to cope with the fatigue and pain. Once I stopped doing last year I noticed I still felt the same way but had more complications.

I developed COPD (Empysema) in 2008, Acid reflux disease in 2005, and a terrible rash that has not went away in over 10 years.

It started with my feet with fungus growing underneath my toes and then a rash developed around my groin area.

Every doctor i went to said it was fungus and gave me antifungal cream to use. The cream worked on my groin area but as soon as I was finish the rash would come back even worse. Now the rash has spread almost up to my belly button and all over my buttocks.

I went to my family doctor a few month ago and was retested for Lyme Disease. It came back positive. I did some research online and someone referred me to a LLMD in West Chester, PA.

I finally seen the LLMD who is board certified family physician and Fellow of the American Academy of Family Practice, is a member of the Board of Directors of the Lyme Disease Foundation, a scientific advisor to the LDF, and maintains the LDF website.

He gave me 400mg of dioxycylone and hydrocodone to deal with pain. He also sent me to take a DNA test for Lyme and Coinfections. He tested me for Lyme, Bartonella, Ehrlichia, and Babesia.

I just received my blood work which was mailed to my home. The test results look like this:

Lyme Disease DNA, QL,
Real Time PCR, Blood AMD
Lyme Disease DNA, Blood Not Detected

For the Coinfection this is what it says:

This test is performed pursuant to a licence agreement with Roche Molecular Systems Inc.

Bartonella DNA, QL
Real Time PCR Pending

Ehrlichia Chaffeensis DNA
Real Time PCR Pending

Babesia Microti DNA,
Real Time PCR Pending

The Hydrocodone my LLMD was 5mg and gave me 50 of them and I was done within two weeks. It didn't seem to help my pain but just give me some comfort. I was in so much pain last night I went to the hosptial where I received Oxycodone and helped me out a lot.

I was referred to see a Pain Management Specialist but not to the 27th.

My symptoms are still the same: pain in muscles, joints, hard to walk, night sweats, increased sweating to the point where I take a shower and I start to stink almost within an hour from sweating and smells like body odor. Its horrible, I still have the fungus and the rash, get migranes that last for days, I have difficulty concentrating, terrible anxiety (I take 6mg of xanax a day just to releave this), panic attack if i don't take xanax, blurred vision, double vision, so much pain i feel sick at my stomach, loss of appetite, loss in interest in everything i once enjoyed, no interest in anything, never want to go anywhere, always tired, always moody and the list goes on and on.

Im sick and tired of feeling like this! If i don't have Lyme Diease than what is wrong with me? Can anyone please help me figure this out or maybe someone has gone through a similar situation who could tell me what I may have.

I have a wife and kids and cannot do anything. My wife works and I can barely take care of myself anymore let alone my little girl. I just want my life back. I feel really disgusting all the time and I am sick and tired of being sick and tired.

Does anyone know what could be going on with me or give me advice or point me in the right direction? I need to feel better soon so I can work and take care of my family.

I feel like I lost 15 years of my life and will never get it back. I don't want to loose another 15 years.

Someone please give me feedback... I feel like life just isn't worth living anymore and Im sick of feeling this way. I just wanna get better.

"My sweet lord, I really wanna know you, I really wanna be with you, I really wanna see you lord by it takes so long" (George Harrison)

Posts: 52 | From Levittown, PA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
glm1111
Frequent Contributor (5K+ posts)
Member # 16556

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Hi,

Parasites and worms play a MAJOR role in Lyme disesase. Check out

www.lymephotos.com

This is exactly what came pouring out of me when I did antiparasitic herbs and then salt/c (sea salt) Also check out lymestrategies for other protocols that people are using such as rife.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Member # 11141

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Are you still receiving Lyme treatment from your LLMD? It can take many months of intense treatment to start feeling better. It's a tough disease.

I was completely disabled as you are and could not take care of myself. With over two years of treatment I am now doing well. If your LLMD won't give you ongoing treatment, I would find one who will. It takes a lot of time. Hang in there, it's not easy.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Lymeorsomething
Frequent Contributor (1K+ posts)
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I would give lyme treatment a turn and see what happens. If your current doc doesn't treat you long enough, find someone who does.

Also consider a complete hormone workup--cortisol, testosterone, e2, IGF-1, thyroid, etc...

If lyme is present, the manifestations can be complex and wide-ranging.

I was a very good athlete too so can relate. It's hell to get derailed and not be able to do the things you love, but hang in there.

This board is a good starting point. Just do your homework... Good luck.

--------------------
"Whatever can go wrong will go wrong."

Posts: 2062 | From CT | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
aubsdaddy
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I plan on staying with my LLMD and plan on staying on antibiotics if it takes the rest of my life. But why would my results come back negative for a DNA test for Lyme? If i have it why is it coming back negative? Is it chronic? and if so what exactly does that mean?
Posts: 52 | From Levittown, PA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551

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Congratulations on finding a lyme literate doctor.

Im not sure how long you have been on doxy but it can take MONTHS to feel better, especially someone who has had lyme for so long.

It appears the results are pending. They can take up to 3 weeks or more for results.

A good lyme doctor will treat based on symptoms, NOT test results.

Some folks only come back positive AFTER intense lyme treatment.

Chronic Lyme means later stage lyme.
http://www.brown.edu/Courses/Bio_160/Projects2005/lyme_disease/diagnosis.htm

This document is published by the top lyme doctor in the USA. You may want to print for future reference.

It may help to provide detailed answers to your questions.

http://www.LymeNet.Org/BurrGuide200810.pdf

Good luck with your treatment and keep us posted!

Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
TerryK
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Many of us have been exactly where you are.

Unfortunately, stories like yours are not unusual. I would be very suprised if lyme disease and/or co-infections weren't at the root of your ill health.

Once you have it, you will likely always have the potential for a flare. From your history, it doesn't sound like you ever got it into remission to begin with not to mention that you got no treatment for co-infections.

Testing for lyme and co-infections is not very reliable. Doctors who know what they are doing, usually diagnose and treat clinically (based on symptoms). It's still good to test for them though because it can help your doctor decide what to treat first.

Lyme and co-infections depress the immune system. Many of us end up with additional infections due to years of having our immune systems not working properly. Parasites, fungus, viruses etc. are very common in lyme patients.

Lyme opens the door for them and we have to deal with all of these infections in order to close the door and allow our immune systems to recover.

I would go full force with treatment. As six said, it can take a long time. I've been treating for 3 years. I've had a lot of improvmeents but still have a long ways to go. I've been sick for many decades.

You can get your life back. Many people have done it and so can you. Learn all that you can about how to make your body less hospitable to borrelia. Get rid of co-infections and all other infections that you've picked up along the way.

You may need to make some lifestyle changes but it will be worth it. Unfortunately lyme is life altering and the majority of the medical community is clueless.

There is much to learn because some of us have genetic issues that make recovery harder. Heavy metals can make getting rid of the infection harder. Hopefully you will be one of the lucky ones who have few complicating factors.

Hang in there. We are here and will help you through it.

Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
JamesNYC
LymeNet Contributor
Member # 15793

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What lab are the results from? That is VERY important. Were they sent to Igenex? But Lyme and other coinfections are well known to not always show positive in tests.

Also is your LLMD a member of ILADS? Some Drs claim to be Lyme Literate and really know very little. Some actually just have really just used the IDSA tutorial on lyme (everyone here despises the IDSA). Your Dr is probably great, but I have a lot of cynicism towards docs in general.

I would recommend you read Cure Unknown, Inside the Lyme Epidemic, by Pamela Weintraub to help understand the morass you've fallen into.

Also, see, rent, Under Our Skin, the documentary on Lyme.

You'll find out that you're not alone or crazy, and that there is hope for getting better.

Good luck

James

Posts: 872 | From New York City | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
Amy C
LymeNet Contributor
Member # 19297

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I heard those DNA tests aren't very good. My 2 boys had them done at Igenex with urine and both were negative. But their blood testing showed a few Lyme bands.

You might want to look into yeast as one of your problems too? Do a search on here and see what you can find. Maybe that is causing your rash and fungus? Just a thought. I know it is common with Lyme.

For the record, I think many of us on here feel or have felt exactly the way you are feeling.

Some of us are sick and have sick children too. I have 2 boys sick along with myself. I think my daughter has it too. Maybe my husband too. My mom and my brother have it.

It is very overwhelming and sometimes I can't take it either! Hang in there!

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
MariaA
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One reason that the PCR test isn't very good is because it looks for bacteria in the blood- and Lyme tends to avoid the bloodstream after initial infection.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

Posts: 2552 | From San Francisco | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
   

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