posted
Hi everyone! I hope I don't ramble on too much but would appreciate your help!
I'm a 27 year old female and new to this site but reading through other posts I certainly can relate to your stories and symptoms!
I live near Bushy Park in South West London, where deer run wild and its a beautiful place to go for a stroll. I went for several walks there early this year (when the weather was unusually warm for February / March). I remember getting a very strange rash on my upper leg, started small and gradually got quite big - the description "bulls-eye" describes it perfectly. Very unsightly and I was glad when it slowly disappeared after about 3-4 weeks. Didn't see a doctor at the time, just thought I was having a reaction to an insect bite. Shortly after the rash went I started getting severe left shoulder pain, going into my neck and upper back and pains coming down my arm into my elbow, wrist and fingers (all on the left side), so bad that I needed to use my right hard to support my left arm with lifting etc. This carried on for about a month (I have suffered with joint pain in my knees from early teens and just dealt with it - general creaking of joints etc - initially thought this shoulder problem was to do with my ongoing knee pain - early arthritis?) and I went to see my doctor when the shoulder pain spread to sharp pains in my whole back. Anti-inflammatories didn't help and shoulder X-ray came back clear - then had chest x-ray as was experiencing pain in ribs and breathing problems - this came back clear. Doctor said I had a musco-skeletal problem in shoulder, that bad posture was causing back pain and that I needed physio. Pain started spreading across whole body, very achy in joints, bones and muscles, from neck right down to feet and toes. Started feeling nauseous 3 weeks ago and this is constant - every day I get waves of nausea.
Consultant at hospital diagnosed Shoulder Impingement Syndrome and I started physio a few weeks ago. Couldn't believe that all my symptoms were caused by shoulder so started reading up on it, I was thinking along the lines of Fibromyalgia at this point as I tested negative for Rheumatoid Arthritis. Went and saw a different GP who took my symptoms more seriously and said I need to see a Rheumatologist for my joint and bone pain. I am booked in for that on 5th November.
However, last night I was looking on internet again and found articles on Lyme Disease. Never heard of it before, I read with interest and then I remembered the rash from earlier this year! It rang alarm bells straight away, and I printed out a picture which was exactly like the rash I had and went to my GP this morning. I must say he is very understanding and very open to the fact that it could be Lymes, given the circumstances in my case. He has prescribed only 1 week of Doxycycline and took blood which he says will take about 2 weeks to analyse as there are different tests that need to be done.
Any advice you could give me in the meantime would be really helpful. Thank you!
Posts: 1 | From UK | Registered: Sep 2007
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posted
Hi Jans- I am glad you are now on the right track! The bullseye rash and insect bite are very strong indicators for lyme. I got sick around the time when you did too and only recently got diagnosed with it after doing my own research. I am 23 years old, so this has been rough and I understand how difficult this is. I am taking time off from law school to recover and hope that the situation will improve. But everyone says that after proper treatment starts, your symptoms do improve.
Right now, you really need to take charge and do your own research because doctors are very unknowledsgeable about lyme in many parts of the US. I am not sure if the situation in London is better. I have had every blood test ran, including tests for lyme and the ONLY test that was uselful and showed something was the western blot from Igenex laboratory.
You need to get a western blot for lyme at a good laboratory that will report whether you are positive or negative for each band they test. Igenex tests and many different bands related to lyme (12 I think) and reports the results for each band, while other labs don't report the bands they have tested at all and only test 3 or 5 bands. \
The ELISA tests for lyme that most doctors run first are not very accurate and they were negative in my case. So if the doctor tells you your lyme test came back negative, be sure you know exactly what test he ran and get someone to run a western blot at a good lyme lab. Also, be sure to get a copy of your western blot results and post them here or ask a lyme doctor to interpret them because interpretation of this test is also KEY, even if it says NEGATIVE.
Also, one week of the antibiotic is not going to be anywhere near enough. The standard dose regular docs prescribe here is 200mg of doxycycline for 3 or 4 weeks. However, my lyme specialist doctor (we call them LLMD) prescribed 400mg (200mg twice a day) for 3 months and other antibiotics will be prescribed after that. The 400mg is a proper dose of doxy for lyme unless you are really small but I am about 115 lbs. See a doctor who will prescribe a higher dose for a longer period of time than one week.
I recommend you do whatever you can to research lyme and locate a doctor who specializes in lyme or sees many lyme patients. He will guide you to the right lyme tests. He will also run tests for coinfections that go along with lyme that may possibly contribute to your severe joint symptoms.
I realize the system in your contry may be a bit different and you may not have your choice of docs and have to wait. But it's worth paying out of pocket if you can to get this diagnosed and treated as soon as possible. Finding a doctor knowledgeable about this is so important!
In the mean time, I found the book Healing Lyme by Buhner to be a wonderful book and starting point for research. In the book, he also suggests herbs and natural methods that help with lyme that you can do with antibiotics. Other people in this forum are very knowledgeable about wholistic methods and are very eager to share information.
I also found the website Betterhealthguy.com of Scott Forsgren (who also posts here) to be extremely useful. His website has a ton of wonderful info and helped me get properly diagnosed. It goes into more details about specific tests. I believe there is also a European lymenet that may help you connect with others near you and to find doctors who treat it.
I hope you do well. I am glad you are looking into this. The sooner you get diagnosed properly the sooner you can start getting better. Hang in there!
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)! !*)*)!*!*)!)*!
Yup, there's a group called EuroLyme*)! Heard it is a great group!!!
One week would do nothing if you have Lyme!!
I would try to find an LLMD- a Lyme literate MD- in England.
WELCOME*)!*)!
p.s. My favorite TV show is EastEnders*)!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Welcome
I would take californialyme's advice and try to find a llmd if you can.
Just in case you didnt know you can test negative for lyme and still have it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Welcome to the board. You are doing things right in doing your own research. It's so important to take your health in your own hands.
You have received some great advice on moving forward. In the meantime, I want to make a recommendation to help with your pain.
I have the same type of pain you have. I've had intense shoulder and arm pain since I was 27, and now I'm 32. I recently started Zanaflex, it's a muscle relaxer and antispasmodic. It works incredibly well and I've been able to go from taking Vicodin 2-3 times a day, to only once a week.
I take 4mg at bed, and 2mg every 5 hours during the day. I started with 2mg at bed, increased to 4, then started adding in the day dose, one at a time. That way you get used to the fatigue it can cause. Taking it with food keeps me from getting tired from the daytime doses.
This isn't a replacement for treating Lyme. But I'm a huge believer in treating the pain while you are treating Lyme. There is no reason to live in pain.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Hi -- you're getting good advice from people here. Wanted to add that I go through nausea when my C2 vertebra is out, and a good chiropractor puts it back in place and stops the mausea temporarily.
Posts: 13116 | From San Francisco | Registered: May 2006
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