amber

Belmar, NJ

#41 Jun 4, 2010
R Mason wrote:
Symptoms since 2004: Bilateral joint pain, starting in wrists, moving to finger joints, then ankles. Intermittent unexplained nausea, especially when out and about. Worst after waking, symptoms mimic carpal tunnel and actually underwent surgery. Symptoms mimic Rheumatoid Arthritis, but multiple tests over 2 years show no trace of Rheumatoid Arthritis - wide battery of tests recently came up clean.
Taking Doxycycline since July of 2007 at country doctor's recommendation as I live in heavily wooded area known for deer/ticks. Tick was embedded in back in early 2004, but no "bullet" mark noted. Test for Lyme came back negative (twice I think).
Had strong Herx reaction to doxy after 2 days, then symptoms dramatically dropped off.
Stopped taking doxy in December 2007, but after 2 weeks symptoms returned with worse pain in finger joints and ankles than before (wrists about the same as before treatment).
Back on Doxy now. Know that doxy has an anti-inflammatory effect. Concerned that this is not Lyme disease as doctor friend who studies diseases (not Lyme specifically) thinks Lyme should have been gone after about a month. Arthritis specialist asked me to change diet a month ago and drop off of doxy, but now has me back on doxy because "it works" and has no noticeable side effects.
Concerned about some other cause.
Ideas anyone?
Thanks in advance!
I had lymes pretty severely for about 4 years... Not sure if I kept catching it, or if it laid dormant and came back.

It sounds like you definitely have lymes... its not uncommon for it to resist Anti Biotics...
Tia

Vancouver, WA

#42 Jun 20, 2010
-
http://www.ilads.org/

ILADS - International Lyme and Associated Disease Society

==========

http://www.lymediseaseassociation.org/

Lyme Disease Association

==========

http://www.lymedisease.org/

California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.

==========

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

==========

www.igenex.com

IGENEX testing for all tick-borne infections (Lyme seldom travels alone)

==========

http://www.drcharlescrist.com/testing.htm

Testing, Western Blot explanation by Charles Crist, MD in Missouri

==========

www.jneuroinflammation.com/content/5/1/40

Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis

==========

http://www.molecularalzheimer.org

Biofilms of Borrelia burgdorferi and Clinical Implications for Chronic Borreliosis

==========

Why an ILADS-educated LLMD is important; how the IDSA lets down lyme patients:

www.clinicaladvisor.com/Controversy-con ... le/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

==========

http://www.underourskin.com

UNDER OUR SKIN - Documentary

==========

http://tinyurl.com/5crsjv

Cure Unknown: Inside the Lyme Epidemic (2008)- by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

Author's website: http://www.cureunknown.com
-
MARYLYNN

Ashtabula, OH

#43 Jul 6, 2010
MY FAVORITE DOCTOR GAVE ME VICOIDIN 750 MG. FOR THE PAIN, THAT I TAKE ONCE IN THE AM AND ONCE BEFORE ATTEMPTING TO MAKE DINNER.THIS IS MY ONLY SAVING GRACE...MY LYME DOCTOR WILL NOT GIVE ME ANY PAIN MEDS...FUNNY,AS THE DOCTOR WHO GIVES ME THE VICODIN TESTED THE STANDARD LYMETEST AND FOUND IT NEGATIVE,YET WHEN I CAME BACK WITH RESULTS FROM MY LYME DOCTOR,HE READ ALL THE INFO,AND EVEN THOUGH HE IS SCEPTICAL ON THE PROTOCOL,HE UNDERSTANDS MY PAIN...ANGELS COME IN ALL FORM...BLESSINGS
martha

Boyertown, PA

#44 Aug 27, 2010
i was diagnos with lyme on april 2009, but i did never heard about lyme disease so the stuped doctor that i had just prescribed doxy for 14 days and after still searching in the internet i found out how bad lyme can get since them iam payin myself for every medicene do i have dont give up jesus is alive.......
martha

Boyertown, PA

#45 Aug 27, 2010
lyme can be cure is just the goverment dont want to invest so much mony to bring the cure, but i know is a cure people with aids still alive for many years lyme disease is just a bacteria that need to be taRGET ON THE HEAD LIKE GOLIA.....
Kathy

Somerset, NJ

#46 May 5, 2011
I was dignosed with Lyme 4 years ago. My doctor said it was stage four. I was not aware of a bite and went to the doctor for extremely swollen knees and consequent pain. I can take pain well, and that's a dissatvantage because I do not pay attention to pain symptoms. I was on doxy for several weeks and my doctor insists that I'm clear of Lyme.
I had reccuring swelling, did not pay attanention to pains, but returned to the doctor for bilateral pains in my joints and my muscles, particularly biceps and triceps. The pain started in the joints, transfered to the muscles, all the way to the wrist, to the point of not being able to use the computer mouse.
She found no arthritis, I'm still free of it and sent me to a neurologists. I was afraid to go because they would puncture me with needles along the whole lenght of my arm.
I went to physical therapy instead, since I was already going to the therapist for a broken ankle. It took over 6 months of therapy to get into shape.
Again after months of small pains I went to the doctor, this time for joint pains. She recomended an orthopedic who found nothing wrong, offered me a Cortizone shot, which I did not take . By now the pain is already in my muscles. I just cancelled a family gathering because I can hardly lift the plates to set the table. I'll go for that Western blot test someone reccomended earlier. At least I'll know whether is it Lyme or whether I'm turning into a hypochondriac.
Bob

East Lansing, MI

#47 May 10, 2011
Kathy one western blot will not rule out lyme in your system. A positive will let you know its there but a negative does not rule it out.

http://www.ilads.org/lyme_disease/treatment_g...

Go to ilads and get educated. You need to see a physician that is familiar with chronic lyme. It will fool most of them.

Do you have any neurological symptoms? fatigue, bipolar-like, panic, headhaches..
Kathy wrote:
I was dignosed with Lyme 4 years ago. My doctor said it was stage four. I was not aware of a bite and went to the doctor for extremely swollen knees and consequent pain. I can take pain well, and that's a dissatvantage because I do not pay attention to pain symptoms. I was on doxy for several weeks and my doctor insists that I'm clear of Lyme.
I had reccuring swelling, did not pay attanention to pains, but returned to the doctor for bilateral pains in my joints and my muscles, particularly biceps and triceps. The pain started in the joints, transfered to the muscles, all the way to the wrist, to the point of not being able to use the computer mouse.
She found no arthritis, I'm still free of it and sent me to a neurologists. I was afraid to go because they would puncture me with needles along the whole lenght of my arm.
I went to physical therapy instead, since I was already going to the therapist for a broken ankle. It took over 6 months of therapy to get into shape.
Again after months of small pains I went to the doctor, this time for joint pains. She recomended an orthopedic who found nothing wrong, offered me a Cortizone shot, which I did not take . By now the pain is already in my muscles. I just cancelled a family gathering because I can hardly lift the plates to set the table. I'll go for that Western blot test someone reccomended earlier. At least I'll know whether is it Lyme or whether I'm turning into a hypochondriac.
joni

Shreveport, LA

#48 May 28, 2011
Is it possible to have been bitten by a deer tick, and not know it? can the tick fall off, and you not ever see it? I was bit by something, had a bullseye rash, and got very sick. I still experience fatigue, and severe muscle and joint pain. I had a test that was positive, but some people said ticks have to be pulled off. I think I still have Lyme.
michelle

United States

#49 May 28, 2011
you still have lyme joni. i am 3 years on antibiotic and am finally symptom free. my daughter is 4 years late stage neurological lyme. my husband is 4 years and not well yet. none of us ever saw a tick.
LivingStrong

Royal Oak, MI

#50 Jul 7, 2011
MandySue- i am pretty sure which doctor you saw and my symptoms were almost identical to yours. i have some advice i would love to share with you. if you are still active on this board, please reply to this post, hope to hear from you.
MANDYsue wrote:
It's interesting to have found this site too because an homopathic DO that I go to said I could do the same as my test have come up negative and she mentioned the lab that would do athe Igenex test. If I could get the information regarding that lab and how it worked that would be really wonderful.
I too suffer for significant ankle and wrist pain and although I don't recall ever being bit by a tick however my childhood environment certainly would have allowed for that to happen. At any rate I have been to many doctors and treated for Rheumatoid Arthritis with no results. I also have had a thyroid disease which resulted in the removal of my thyroid. I've actually gone to Mayo Clinic in Florida and had no luck there. At any rate about 2 years ago I saw a homeopathic D.O. that believes I have Lyme disease. I often do research on the internet and up until now I've never talked to anyone with similar symptoms. My symptoms are much worse with activity. I have not taken the "traditional" method of therapy with all the antibodics and I'm fearful to do so. They think that I've had the Lyme for many, many years so I don't even know if taking the antiobodics would help at this point.
Any info anyone can offer would be greatly appreciated. It's a terrible thing to be 30 and feel like your 80!
CozyCabin

Caro, MI

#51 Jul 22, 2011
LivingStrong wrote:
MandySue- i am pretty sure which doctor you saw and my symptoms were almost identical to yours. i have some advice i would love to share with you. if you are still active on this board, please reply to this post, hope to hear from you.
<quoted text>
I too would like to reach MandySue and am interested in your advise LivingStrong. Have the name of the same Dr. In MI (I'm assuming) Just trying to put together the extra funds to go see him. Been through the wringer.... the-cozy-cabin@hotmail.com

Since: Jul 11

Saint Petersburg, FL

#52 Jul 22, 2011
Hi. I have a loved one w lymes, contracted 2.5 years ago . Now im involved in bringing out an herbal potential cure. The creator believes it is ready after 2 years of his effort. Because it is a plant based cure, it is a suppliment, and harmless. However it is we believe going to work. If you are interested in a free trial run please write back with how I can contact you. Thanks , Patricia
R Mason wrote:
Symptoms since 2004: Bilateral joint pain, starting in wrists, moving to finger joints, then ankles. Intermittent unexplained nausea, especially when out and about. Worst after waking, symptoms mimic carpal tunnel and actually underwent surgery. Symptoms mimic Rheumatoid Arthritis, but multiple tests over 2 years show no trace of Rheumatoid Arthritis - wide battery of tests recently came up clean.
Taking Doxycycline since July of 2007 at country doctor's recommendation as I live in heavily wooded area known for deer/ticks. Tick was embedded in back in early 2004, but no "bullet" mark noted. Test for Lyme came back negative (twice I think).
Had strong Herx reaction to doxy after 2 days, then symptoms dramatically dropped off.
Stopped taking doxy in December 2007, but after 2 weeks symptoms returned with worse pain in finger joints and ankles than before (wrists about the same as before treatment).
Back on Doxy now. Know that doxy has an anti-inflammatory effect. Concerned that this is not Lyme disease as doctor friend who studies diseases (not Lyme specifically) thinks Lyme should have been gone after about a month. Arthritis specialist asked me to change diet a month ago and drop off of doxy, but now has me back on doxy because "it works" and has no noticeable side effects.
Concerned about some other cause.
Ideas anyone?
Thanks in advance!
Sick Monkey

Gainesboro, TN

#53 Jul 30, 2011
I just tested positive for both Lymes Disease and Rocky Mountain Spotted Tick Fever. I have been so sick for the past couple of weeks and I went to the Dr to see what was up. I was so tired and run down and just overall felt bad. She said, what are those bites on your feet. I go, Oh I got into a bunch of seed ticks a couple of weeks ago. She did the blood work and it all came back positive! I have never felt so sick in all my life. How long does this last? Good lord. I cant be down long. I am my soul provider!
miss noel

Phoenix, AZ

#54 Nov 20, 2011
i was recently tested for lyme disease. i have so many things to say but i dont know where to start.... long story short the doctors said that my lyme 'WENT AWAY ON ITS OWN!'HAHAH i told her that lyme doesnt do that. and im an lmt and i know about this because i read all about this disease prior to the test being done also so id be more educated when i saw the doctor. she kept arguing with me and said well in your case it did just ''GO AWAY.'' can anyone help?
Victoria

San Jose, CA

#55 Dec 14, 2011
miss noel wrote:
i was recently tested for lyme disease. i have so many things to say but i dont know where to start.... long story short the doctors said that my lyme 'WENT AWAY ON ITS OWN!'HAHAH i told her that lyme doesnt do that. and im an lmt and i know about this because i read all about this disease prior to the test being done also so id be more educated when i saw the doctor. she kept arguing with me and said well in your case it did just ''GO AWAY.'' can anyone help?
Please know that testing for Lyme is unreliable. The best advice for anyone trying to recover from Lyme is this...
It is absolutely mandatory you do what ever you are able to have your own body and immune system in top health condition. Our immune system is perfectly designed to defend us and will do so but we have to do our part by living healthy. Lyme may never be fully eradicated from our body although a properly functioning immune system will keep it down so we can live with it. That dr is WRONG! Never ever does it go away on its own, why would it....it may be dormant in cyst form and not causing symptoms but its still there waiting until the environment of the body to become favorable for Lyme to rear it's head and make you sick! Lyme hides and morphs and near impossible to find sometimes in blood, it goes where our blood supply is not. That dr needs some serious education, as do most out there. Live long enough with Lyme and you too will know far more than many doctors!!!

“it's just craic”

Since: Jan 09

Mears, MI

#56 Dec 18, 2011
Victoria wrote:
<quoted text>
Please know that testing for Lyme is unreliable. The best advice for anyone trying to recover from Lyme is this...
It is absolutely mandatory you do what ever you are able to have your own body and immune system in top health condition. Our immune system is perfectly designed to defend us and will do so but we have to do our part by living healthy. Lyme may never be fully eradicated from our body although a properly functioning immune system will keep it down so we can live with it. That dr is WRONG! Never ever does it go away on its own, why would it....it may be dormant in cyst form and not causing symptoms but its still there waiting until the environment of the body to become favorable for Lyme to rear it's head and make you sick! Lyme hides and morphs and near impossible to find sometimes in blood, it goes where our blood supply is not. That dr needs some serious education, as do most out there. Live long enough with Lyme and you too will know far more than many doctors!!!
For me AlliUltra seems to be the answer.

I had symptoms for 25 years, have been been told I had fibromyalgia and chronic fatigue syndrome but no one could explain the rashes.

I have taken AlliUltra for one month, after 4 days I had horrible flu like symptoms that lasted a week. This is a good sign, Herxheimer reaction from dying bacteria. Rashes, fogy brain, difficulty sleeping ALL GONE.

I hope this helps others.
Teresa

Monroe, NY

#57 Jun 6, 2012
I have had Lyme 9 times. The first few times I got the bullseye rash. I don't get the rash anymore but definitely know when I have it. When it's active, the pain is excrucing - hits my back first and then joints. I want to know what are the longterm effects of having it so many times. Doctor does bloodwork and it always comes back as active. I have short term memory loss as well. Any suggestiongs?
atcoleness

Canton, OH

#58 Jun 18, 2012
I was confirmed as having lymes disease this exact time 4 years ago. Over the past week and a half I have felt the very familiar slow buil up of pain all throuought my body and now the fever is kicking in, it feels identicle to how I felt 4 years ago. Could this be a relapse? I read somewhere that paint and other chemicles can trigger it's return, does anyone have any advice or experience woth this? thanks
steph

Clemmons, NC

#59 Sep 15, 2012
worried mom wrote:
my daughter was tested for lyme disease and the test came back inclusive, neither negative and neither positive. she has had symptoms for past 3 years now.headaches, dizziness, muscle/joint/bone pain, stomachace, back pain, teeth/gum pain, rash on face, constipation. she was also tested for lupus and rheumatoid arthritis and both came back negative. she is being treated for lymes with amoxicillin for 3 weeks. very worried that there may be damage to nervous system or heart. how will i know? rash on face is getting worse. has anyone experienced a rash other than the bulls-eye rash? we dont recall her ever being bit. she is 10.
Inconclusive is a good sign that it's positive, save for any lab mistake. Not saying it's definitely Lyme. It could be another bacteria, or another type of infection... Bartonella also causes rashes, and they aren't bullseye, just splotchy. It's a common co-infection with Lyme if I remember correctly.. Not 100% sure though... Go to a good LLMD to find out for sure. The good ones will use labs like iGenex, who are better able to diagnose than other labs. Also, check out the book The Lyme Solution.
Julie

Branson, MO

#60 Oct 11, 2012
The International Lyme and Associated Diseases Society (ILADS)website is a good source for info. I have 3 tick borne diseases and have found you have to be careful where you get information, Even Mayo Clinic has outdated info. There are many Lyme support groups on Facebook that are helpful even if you don't have a diagnosis yet, Lyme 101 is full of helpful, compassionate people.

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