Long Term 'Lyme Disease' Won't Go Away?

Long Term 'Lyme Disease' Won't Go Away?

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R Mason

Palo Alto, CA

#1 Jan 23, 2008
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!
TomfromKC

Kansas City, MO

#2 Jan 24, 2008
R. Mason

Try a different type of antibiotic. This crap is not the same every where and some strains and our own bodies react differently. Try to take the antibiotics for at least 30 days.

Get a western blot test done by the Igenix lab in California.

Educate yourself and ask your Dr. for help. You may have to beg or even get a different DR.

I found a doctor on line and paid for everything myself. It seemed a lot cheaper than losing my job. For some cases people have to take IV antibiotics while others take the pills for years. This is a desease not a cold. It will come back and will keep comming back until it is completely out of your body. Even then you may still have some symptoms.

The herx were actually a good sign. Dont give up.
R Mason

Palo Alto, CA

#3 Jan 25, 2008
Thanks Tom - my family doctor is actually pretty knowledgeable about Lyme and had also suggested some stronger antibiotics. I should have insisted on seeing him last time I went there in December when another doctor in the same office told me I should be able to go off of them.

I tried the rheumatologist when it came back, strong as ever as it seemed odd to me that after so many months the symptoms would come back so strong.

So I'll go back to my family doctor and ask him to give me the "hard stuff" he mentioned we would use if the symptoms would not go away after several months of doxy (and then discontinuing).

I will look in to the western blot test done by the Igenix lab in California.

Since: Feb 08

AOL

#4 Feb 20, 2008
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!
Lyme will not show up in your blood work. Do you live near a wooded area? Are you near deer? Oral doxi will not work on Lyme. Do you have depression too? Fatique? Fever? Chills?
R Mason

Palo Alto, CA

#5 Feb 28, 2008
Yes I live in a heavily wooded area near deer. Doxy seems to be working for my joint pain. I don't have those other symptoms you listed except a couple of days after starting doxy when I have a "herx" reaction. No depression.

Basically the main flare-ups are in my wrists, finger joints, and ankles, but only when I am off of doxy or hit by a viral infection like this week when I got influenza.
bdoldfield

AOL

#6 Mar 15, 2008
I am glad that I found this site. I sent my blood to the Igenex lab in Ca.I live Calgary alberta canada.I had the test for lyme here and it came back negative.The test that I sent to Igenex came back posistive.I had to pay 500 hundred dollars to get the test in the u.s. It was the best 500 that I ever spent because I known what is wrong with me.Boy do I know about herx.it is the most painful thing that I ever have gone through and I am so scared. My hate it when my heart starts to beat fast,I sweat to the point that hair is trenched, cold chills, hot chills, funny feelings in my arms and legs like they are burning.fingers ach, my gums hurt, my ears ring.in bed for days at a time,can't eat every thing taste bitter.I am taking 2 types of antbotics and have been on them 40 days.About 1 hour after I take the pills I am worse and just feel sicker .But I am not going to stop taking the pills because I want Lyme gone forever.
MANDYsue

Southfield, MI

#7 Mar 28, 2008
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!
bdoldfield

Carrara, Australia

#8 Apr 4, 2008
Hi, I have the address and phone #to IGeneX. Inc.
795 San Antonio Road
Palo Alto, CA.94303

They will send you a kit. Take it to a lab in your area and send it back to them .They will send all of the information that you will need. You will have to get a paper from your family doctor to get the blood test done.The results will go back to your family doctor and he will tell you the results.Any more questions about it let me know I would be happy to help you.
bdoldfield

Brisbane, Australia

#9 Apr 4, 2008
Just to let you know that I have asked 20 people if they had ever heard the words lyme's disease.Here are there answers.Yes I have heard
about lyme it's been around for years.Then I ask them what do you know about it and they all said you get it from a tick. No one that I asked had any information on how sick you can get from it.
When I tell them about how sick I am They just
can't believe that a little tick can make a person so sick.
bdoldfield

Brisbane, Australia

#10 Apr 4, 2008
Great web site on information about lyme and co/
infections Canlyme.com This site has alot of information about lyme disease.
Sandra

UK

#11 Apr 7, 2008
I had a bite by something 12 years ago , i broke out in red circular rash for a few days. Then soon became very tired , so much so that i could fall asleep anywhere at any time. This sleepiness lasted for a few months.I always had loads of energy before that.Then i started to feel fatigue every where in my body found it so hard to walk and carry things.12 years later i am in much more pain, hardly ever have any energy.Can anyone give me any advice please .
many thanks .....Sandra x
MANDYsue

Auburn Hills, MI

#12 Apr 11, 2008
Thank you for the information bdolfield. I am actually going to see a physician here in Michigan for Lyme. Ends up after talking about it with some close friend they knew someone who had Lyme and the doctor I have set up an appointment with is the one their friend sees - small world. After looking at the various Lyme Info sites and thinking about my past medical history, which is length, I have high hopes that this physician will be able to help. At any rate, I was able to speak to the individual that goes to him and he said that he uses that lab and that he will send it in (I will pay for it of course) so that in and of itself was good news as no other physician, etc. has mentioned it. I'm anxious for my appointment as perhaps it will be an answer that I have been long awaiting - yet the thought of treatment, etc. is very scary. It truely would be a miracle if my years of sickness and the pain I have could be identified and treated. Thank you for the information.
MANDYsue
Elizabeth

Ludlow, MA

#13 Jan 1, 2009
I was diagnosed with Lymes Disease in July 07. I was so sick for weeks. Fatique still remains a problem along with memory issues. I also have found that I catch everything. I wonder if the immune system is affected. I am very sick now with symptoms that appear to be asthma. They have been treating me for 7 weeks with no improvement. Has anyone else found this to be the case? Catching everything? So disgusted with the whole thing. Thanks
Elizabeth
J Smith

Calgary, Canada

#14 Jan 14, 2009
Anybody in Canada that has lyme disease should go to www.thepetitionsite.com/3/stop-the-harrassmen... to sign petition to get better testing in Canada and to stop the harrassment of LLMDS.
joni

Shreveport, LA

#15 Jun 9, 2009
I have been diagnosed with Lyme, Fibromalgia, and hepatitus c. I live in Louisiana, and went to dr.s for a year to find out what was wrong. I had severe muscle pain, severe fatigue, and nausea, loss of apetite, memory problems, et. Anyway all the docs could not find out what was wrong. I finally went to a doc, that said it might be lyme. I had a test done (sent to California) and it was positive. I was treated with Doxycicline. I got better for a while and then had another episode. After being on anitibiotcs off and on for 6 mths. I still have episodes of my symptoms. The docs tell me it could be any of the three lyme, hep., fibromalgia. I am so tired of living like this. I use to be very energetic. I am only 50yrs. old, and it is so hard to be unable to do any of the things I use to. I have even had to stop working , and collect disability. It is very depressing. Anyone else in this situation that can give me some tips on what to do. I would appreciate it. Joni
RAJONES

United States

#16 Jun 14, 2009
Elizabeth wrote:
They have been treating me for 7 weeks with no improvement. Has anyone else found this to be the case? Catching everything? So disgusted with the whole thing. Thanks
Elizabeth
\

Yes you will catch everything your immune system is depressed. It is common to have co infections of ebstein barr, cytomegalo etc. You basically have perma flue without the nausea and high fever. You probably do not have true asthma but rather an infection. Steroids will be like fuel and will not quell the asthma. I suggest talking your Dr. into taking Zithromax for 4 weeks and watch the asthma go into remission.
If you have neural cognitive issues then IV abs are going to get the highest concentrations in the brain. Ceftriaxone seems to be the best.
From what I have read it seems that late stage lyme is tough to cure and may be life long. Basically you will need booster ABs maybe twice a year. The spirochetes are difficult to eradicate 100 percent, like roaches ya leave one behind and you get more.
Anything that taxes your immune system will bring them out, things like common colds, flue or even seasonal allergies. Thats why many Lyme patients seem to react worse to things as mundane as the common cold.
Bill

Champion, PA

#17 Jul 2, 2009
I have had Lyme for several years. Taking Doxy is not enough since lyme can shift to a cyst form in the presence of anitbiotics. It will keep coming back unless a cyst killer is used as part of the regiment. Doxy + Flaygl seems to be working at the moment for me. Not sure if it will continue to come back. I was on Biaxcin for 11 months and within 3 weeks of stopping it was active again. Also get the co-infection panels from Igenex as well. Hope you all get well.

“Lyme Disease Awareness”

Since: May 09

Location hidden

#18 Jul 2, 2009
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!
What about Tick relapsing fever? Did they check for that???
posslymie

Camp Hill, PA

#19 Aug 10, 2009
Elizabeth wrote:
I was diagnosed with Lymes Disease in July 07. I was so sick for weeks. Fatique still remains a problem along with memory issues. I also have found that I catch everything. I wonder if the immune system is affected. I am very sick now with symptoms that appear to be asthma. They have been treating me for 7 weeks with no improvement. Has anyone else found this to be the case? Catching everything? So disgusted with the whole thing. Thanks
Elizabeth
Have you been checked for co-infections? Often, people with lyme disease have other tick-borne diseases such as bartonella or babsioesia (sp?) Babs can cause symptoms such as SOB and airhunger. It is not a bacteria so the antibiotics used for lyme will not kill it. Just a suggestion.
Janette

Pittsburgh, PA

#20 Aug 19, 2009
Over the past 3 or 4 years I have gotten bad joint pain. Wrists, ankles, fingers, toes, etc. Sometimes swelling, sometimes not. The pain some times controls my life. I am 28 and feel much older. I've been tested for rheumatoid arthritis & lupus 2 years ago & again this year. Both times tests are negative. This whole thing is making me crazy. This is my main problem. But, I also have had fatigue issuses for over 10 years now. They tested me for sleep apnea, everything was fine. I get sick easily. I have Asthma issues & headaches. I remember getting bit by a tick when I was about 11 or so. 17 years ago? Would that make any sense? Should I push for a Lyme disease test? Do my symptoms seem right?
If any one can offer any help it would be apreciated.-- Thank you!

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