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LYme disease or Reactive arthritis ... Help

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Posted 1/1/2013 6:51 PM (GMT 0)
Hi, I have been diagnosed with Reactive Arthritis after testing a false positive for Lyme disease. My first test was positive in Igm but the immunoblot returned a false result so the doctor said it must be reactive arthritis .This was in August 2012!

I have pain in my neck , groin, elbows, knees and ankles, wrists , jaw, behind ears, back of neck, fingers and my eyes are very dry and sore. I have swelling on my ankles if I walk for longer than 5 minutes. I also get a lot of pain in my neck around my glands. If I try to do anything excertive they react and I start to feel unwell. I take naproxen 3 tmes a day which has controlled most of the pain, but if I miss 1 tablet I get pains and swelling within 24 hours and it then takes a couple of days for it to calM down. My joints are also very hot to touch especially the ankle, which is where the doctor thinks Iwas bitten by an insect or tick. I also suffer severely with fatigue , I sleep almost every dayhalf way through the day and this is an uncontrollable tiredness that zaps you out completely. I feel so tired of this constant pain and my doctor said I would be better in 6 months but that now looks unlikely. I am worried I have something else wrong, I was so active before and now just sleep and sit. I am working part time and trying to increase it gradually so it does not flare it up but my

Patience are wearing thin. The doctors don't seem to know much or have many answers I feel so frustrated, anyone out there feel the same or have some suggestions for other medicines,,,,,,,,,,,,,,,,, HELP x rolleyes rolleyes rolleyes
Posted 1/1/2013 11:09 PM (GMT 0)
Hi Sqwa!
I'm so sorry to hear of the issues you have been dealing with! Do you know what type of test returned your positive IgM? It really, really rare (some say it's not possible) for there to be a false positive on any kind of tick-borne infection test though! Unfortunately most doctors that haven't been specifically trained by ILADS (International Lyme and Associated Diseases Society), don't know hardly anything at all and are more likely to spread false information than anything helpful.

Combined with your other symptoms, I would venture to guess that you need to see a Lyme Literate Medical Doctor (LLMD) though. They won't diagnose & treat you if you don't fit the profile of someone with a tick-borne infection as they are under attack and watched closely. I would also suggest that you look into Lyme arthritis, it will destroy joints the same as osteoarthritis. I have Lyme arthritis and it's got my fingers twisted and bent - my toes have pretty much recovered though! LOL!

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can also email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You are not alone in this! We are here to help answer your questions, point you in the right direction for more information and we will even share our suggestions when you can't figure out "where to go from here?"!!!

As for the swelling, I would suggest that you use turmeric - I use 1500 mgs three times a day along with the same amount of ginger root - although it does takes a couple of weeks for it to help much. It really helps with my inflammation and so it helps with some of that pain.
Posted 1/2/2013 8:33 PM (GMT 0)
Hi,
Thanks for the response it's nice to speak to someone who understands and is going thought the same problems.
I went back to my Rheumatologist at the hospital today and he has said he is reperforming the Lyme disease test as I may have had it too early for the immunoblot to work. I am really pleased he is retesting as I have been worried, and my normal go has been useless if it was up t them I would be n repeat precription for naproxen and left to suffer .....
He is also retesting all my bloods and an MRI scan on my ankle, so I at last feel happy that I am being fully investigated. If these return no results at least I will have checked everything out.
The only info on the test I originally had is that my B.burgdorferi IgM was positive and that the second test which was an immunoblot was negative of the borrelia antibodies.
Not sure what this means ......
My symptoms seem classic of Lyme but I was bitten in my garden in suffolk, uk, and it's not a particularly Lyme active area. Although the doctor said he has seen some cases here. Is it right squirrels can carry the ticks as we have a large population of grey squirrels in the cemetery behind my house, and they are always in our garden.
I will check out the rest of the site,
Many thanks again,
Nice to not be alone, it's hard for others to understand my symptoms..
X
Posted 1/2/2013 10:07 PM (GMT 0)
You've had a positive test and have the classic symptoms? There's really no need to have any more tests done. You need to be in treatment then.

Lyme and it's co-infections are everywhere now. Some places just don't want to admit that these diseases are there - goofy but true!

Here is an article that explains that grey squirrels and pheasants are an important reservoir of Lyme.
www.ncbi.nlm.nih.gov/pubmed/9269722
The exact sentence that you want from this article is: "These data clearly demonstrate that grey squirrels are amplifying and reservoir hosts of B. burgdorferi s.l. The strain associated with squirrels was related to the B. afzelii."

I'm sorry that I didn't realize that you were in the UK. Are you close to Breakspear? I know that we've had several member go there for treatment of their tick-borne infections. You can use our search function and enter the terms, "Lyme, Breakspear" and you can read the threads where they are being spoke of.

You are definitely NOT alone any longer!! We are all here to help answer your questions, and to guide you to information that you may need!
Posted 3/27/2014 5:06 PM (GMT 0)
Sqwa, I am in the same boat as you, however I have not told my Rheumatoid Dr that i had lymes disease about 17 yrs ago. I do not want to be denied health ins in the future (which may happen). I got LYME in New Jersey and what happened was I was bit on the lower leg, developed the big Bullseye and my muscles started weakening so bad in my lower body that i went to hospital. I think the tick was not in me and i took antibiotics for about 3 weeks and was fine. It never returned. Recently (I am almost 43 yrs old) I got food poisoning and became ill on Feb 17. My husband also got same think 2 days later. We both went to doctor. I went after 9 days to gastroenterologist. They did stool samples, blood tests and urinalysis. All was good except my lymphocytes (white blood cells) were elevated. I was given CIPRO antibiotic for 8.5 days. after 1.5 days i started to feel better. You ask why i say food poisoning? Because we ate out often in 2 weeks prior to me getting sick, my sickness and my husbands started with very watery diahrreah, stool, and horrible STOMACH NOISES AND STOMACH PAIN, our stomaches were like wrenching and very loud noises, had two days of loose stool, then after 2-3 days had constipation, The craziest thing was that we had chills (not chills but felt very cold) in hands and feet/nose. Also stabbing/strange pains, after about 6-8 days (before I went to Dr), I got bad JOINT PAIN, it started in my butt bone, sacroiliac and then it was in my hands, toes, wrists, ankles, and Lower back, the lower back pain was HORRIBLE after 9 days. Nsais or naproxen helped but it was horrible joint pain, after 7 days I did get swelling of my mid finger joints too (still swollen after a month) after 2 weeks and after starting cipro, my knees swelled and hurt, left knee is worse. So, I go back to Rheumotologist on Tuesday, I did test negative for inflammation and Rheumatoid arthritis and no gene test was done. This dr gave me oral steroid pills that did help me some. Maybe you would benefit). I also SEE EYE DR because my eyes are inflamed UVELITIS it is called. I have eye drop steroids. I saw a CARDIOLOGIST yesterday and had heart ultrasound because i am very put of breath , especially if i come up stairs and think i have erratic heart beat. BEFORE this, I was in very good shape and in gym 4 times a week, never out of breath, and i am only about 8 pounds overweight for my height/weight. I was in great health before this food poisoning, and truly believe i have reactive arthritis and not Lyme coming back. Now, my husband had same illness and joint pain and his joints did not swell. My knees and my hip/butt area still hurt and i may need shot in my knee on tuesday. I cannot do a stress test on treadmill until monday, since it will hurt my knee.THIS REACTIVE ARTHRITIS HAS BEEN GOING ON SINCE about FEB 22, food poisoning was feb 17. So over a month. I was always out of breath and my husband was also from sickness. His test results were normal, so whatever it was must have left our bodies before stool sample was done..Lymes did not cause me to be out of breath, I was treated about 9-10 days after being bitten by the tick, because of severe muscle pain and It was almost where i could not walk. With reactive arthritis I find that now i have this shakiness (sort of like muscle spasms in my body), joint pain is getting better. Sure steroids helped and Flax oil also helps. I will repost with update. Take care of yourselves! cool
Posted 3/28/2014 6:20 PM (GMT 0)
Hi Alice,
Welcome to our community. I'm so sorry that you have had such a tough time.

You should know that all of your symptoms that you listed could most definitely be caused by Lyme disease. You were not treated for a long enough period of time. The Lyme bacteria goes through it's "cycle" in our body very, very slowly compared to other bacteria. It takes 6 - 8 weeks, so you can see that by being on abx for only 3 weeks, the bacteria were only exposed to the abx once, if that.

Steroids are not good for those with Lyme, as steroids are not to be used if the person has a possible infection... which you do most likely considering the inadequate amount of time you had in treatment. If you investigate the information I gave above and find that you do match up with Lyme symptoms (please take a look at our "New to Lyme?" thread for symptom lists), please talk with your doctor.
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