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Author Topic: new/help
quicksilvermom
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Member # 29949

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Hi
I am new here and wanted to find out if it is possible that you have lymes without a possitive test? I have had three bullseye rashes from ticks in the past 15 years, treated at the time with antiboitics, however over the fall my neck got really stiff, hurt to turn a certain way etc..went to sports doc, did mri, small little buldge in c5-c6,nothing big, so ordered physical therapy, started end of oct., had TENS,stretches, etc..got better off and on, thought the running on the treadmill was still bothering it, so cut back on time and pace, then three weeks ago went to PT, TENS was applied and boy did it feel different, this crazy pulsing in my neck, my hands,arms,legs,feet all felt pins and needles,told them to stop, went home, shooting pain in chest and left side of neck and face, went pale, chilled to bone, my family called 911, my bp was 200/100, they thought it was my heart, heart is good, released and then since all these weird symptoms started, severe sun burn feeling, pins and needles, then christmas eve couldn't catch breathe, rushed back to hospital, again heart lungs good..went home, christmas day, pins and needles, and the heaviness again husband took back to hospital, this time they kept me, did all kinds of laps, heart tests, echo, carotids, mri of neck thinking pressed nerve..all great, while in hospital I had this strange episode, shooting pain from elbows down and knees down, felt like fireworks going off, lasted maybe 15 min, then went away?? off and on pins and needles throughout body,I was discharged, and followed up with primary next day, right away his gut was lymes, started me on doxy and sent for labs, labs all normal, but the crazy part is I started the doxy , felt great for 4 days, and then it felt like Christmas day again, the pins and needles in arms,hands,legs,feet, heaviness in breathe, then chilled to bone, then went away, next day woke felt like I had the flu without the fever or chills, everything ached, top of toes, name it ached, then next day not an ache, but the pins and needles, and heaviness but not as severe? Doc wants me to see nuerologist, but is keeping me on doxy, I also get ringing in my ears off and on, stiff neck off and on, its nuts, up until three weeks ago, besides the neck pain, I was running 3.5 miles 6 days a week, eating right, running around taking care of kids, etc...I feel like my entire life is our of control, my gut says its lymes too and that I might be reacting to the meds, he's just saying that my tests were negative, but from research it seems this can happen, plus I had lymes before...help...don't want to go on this roller coaster, my family needs me, I care for our youngest son with special needs and am so emotional right now, I am usually such a strong person, but this has rocked my world, even my doc said I know you, your not crazy, this is real he just isn't sure what it is, please help.

Posts: 6 | From nj | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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breaking up post for easier reading

quote:
Originally posted by quicksilvermom:
Hi
I am new here and wanted to find out if it is possible that you have lymes without a possitive test?


I have had three bullseye rashes from ticks in the past 15 years, treated at the time with antiboitics, however over the fall my neck got really stiff, hurt to turn a certain way etc..went to sports doc, did mri, small little buldge in c5-c6,nothing big, so ordered physical therapy,


started end of oct., had TENS,stretches, etc..got better off and on, thought the running on the treadmill was still bothering it, so cut back on time and pace, then three weeks ago went to PT, TENS was applied and boy did it feel different, this crazy pulsing in my neck, my hands,arms,legs,feet all felt pins and needles,told them to stop, went home, shooting pain in chest and left side of neck and face, went pale, chilled to bone, my family called 911,


my bp was 200/100, they thought it was my heart, heart is good, released and then since all these weird symptoms started, severe sun burn feeling, pins and needles, then christmas eve couldn't catch breathe, rushed back to hospital, again heart lungs good..


went home, christmas day, pins and needles, and the heaviness again husband took back to hospital, this time they kept me, did all kinds of laps, heart tests, echo, carotids, mri of neck thinking pressed nerve..all great, while in hospital I had this strange episode, shooting pain from elbows down and knees down, felt like fireworks going off,


lasted maybe 15 min, then went away?? off and on pins and needles throughout body,I was discharged, and followed up with primary next day, right away his gut was lymes, started me on doxy and sent for labs, labs all normal, but the crazy part is I started the doxy ,


felt great for 4 days, and then it felt like Christmas day again, the pins and needles in arms,hands,legs,feet, heaviness in breathe, then chilled to bone, then went away, next day woke felt like I had the flu without the fever or chills, everything ached, top of toes, name it ached, then next day not an ache, but the pins and needles,


and heaviness but not as severe? Doc wants me to see nuerologist, but is keeping me on doxy, I also get ringing in my ears off and on, stiff neck off and on, its nuts, up until three weeks ago, besides the neck pain, I was running 3.5 miles 6 days a week, eating right, running around taking care of kids, etc...


I feel like my entire life is our of control, my gut says its lymes too and that I might be reacting to the meds, he's just saying that my tests were negative, but from research it seems this can happen, plus I had lymes before...help...don't want to go on this roller coaster,


my family needs me, I care for our youngest son with special needs and am so emotional right now, I am usually such a strong person, but this has rocked my world, even my doc said I know you, your not crazy, this is real he just isn't sure what it is, please help.



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

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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A bullseye rash is diagnostic of Lyme Disease. If you had a bullseye and have symptoms, you have Lyme. Check out the diagnostic and treatment guidelines at www.ilads.org (Dr. B's).

All a Lyme test can show is exposure. Symptoms show whether you are ill with the disease. Your bulleyes prove exposure.

Post in seeing a doctor to find an LLMD near you.

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

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Dekrator48
Frequent Contributor (5K+ posts)
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quicksilvermom,

Many of us with lyme have never had a CDC positive test. The criteria for being CDC positive are too strict it is really for reporting only, not diagnosis, even though most Dr's don't understand that.

As sixgoofy pointed out, a bullseye rash is diagnostic of lyme. It is likely that you were undertreated using IDSA guidelines and it spread.

Many people can relate to the symptoms you describe.

You need evaluated by a Lyme literate MD who follows ILADS guidelines.

He/she will be able to also evaluate you for the many common coinfections that ticks transmit such as Babesia (shortness of breath/air hunger is a common symptom), Bartonella, Ehrlichia, etc.

See pages 22-27 of Dr B's paper to read about these coinfections...

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


Complete symptom list is on pages 9-11.

Become familiar with Dr B's entire paper. It is considered the bible of lyme treatment.

Don't waste time with your regular Dr or an ID Dr who likely not be lyme literate even though they may think they are.

There is so much to learn about lyme, so start reading and as mentioned above, go to the Seeking a Doctor board and create a post asking for a LLMD in NJ or nearby state.

The faster you get to a lyme literate MD, get an eval and proper treatment, the better chance you have of recovering.

Other resources you must read...and get your family on board with this info...


http://www.lymepa.org/Basics2007v1.2Rev.pdf


http://www.lymenews.org/d_CALDA_TwoStandards_7_2006.pdf


http://www.ilads.org/lyme_disease/about_lyme.html


http://www.jpands.org/vol14no3/maloney.pdf


http://www.lymedisease.org/lyme101/lyme_disease/lyme_disease.html


There are things like diet changes that can help to start reducing symptoms.

Many people benefit from being gluten free and sugar free (including high fructose corn syrup)..among other allergenic foods.

Dr B talks about many of these things in his paper above.

Keep reading and posting, You have come to a good place for help and hope.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
lymeboy
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yes.... find an LLMD. A bullseye is a better indicator than any lab test.
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kidsgotlyme
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So sorry that you are having to go through this.

I hope that you take the advice that was given.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
Peyjad
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Welcome

I am here if you need/want to talk. I am beating Lyme and also have a special needs daughter with it also, so I understand 100% your worries and fears

Please take the advice and find an LLMD

The people here are so helpful and understand firsthand what everyone is going through. It's a great source of info and support!

Posts: 93 | From PA | Registered: Nov 2009  |  IP: Logged | Report this post to a Moderator
   

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