posted
Would like to get tested, perhaps I am freaking myself out, but I seem to have alot of the symptoms...
Looking closest to Peoria, IL as possible. Is it even worth having my regular MD test me for it?
Thanks!
Posts: 2 | From Peoria, IL | Registered: Oct 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Lyme is a clinical diagnoses, meaning it is diagnosed based on symptoms. Testing is less than 30% accurate and you can have Lyme disease plus many co-infections and never have a positive test.
I have sent you lots of links and info to get started, including the names of LLMD's in your area. Reading and educating yourself about this illness is the best thing you can do.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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bettyg
Unregistered
posted
welcome just checking
check your profile above for my pm of illinois & s. wisc. llmds
read over the SYMPTOMS LISTS good of lyme and all the other diseases ticks carry in that post ok!
Welcome to Lymenet! I'm so glad you found us! You've come to the right place for education and support!
The following is some links that may be helpful to you:
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org
They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.
Optional tests include: co-infection panel for your area of country and PCR whole blood
Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.
Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.
For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.
You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.
Go to left hand corner and mark box to receive `all replies', and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
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posted
I am so glad to have found this website and thread!! I live near Peoria also. [Hope I don't skip around too much but like everyone here, there's a lot of info to tell.] I developed 2 bullseye-looking rashes in the beginning of August this year. The one on the back of my thigh started out as a pimple(so I thought) but I have never had a pimple hurt, burn or itch like that. Also found a smaller bullseye on my breast. They were not spider bites, I am sure of that. Also, another pimple-looking sore started on my back but did not develop into a bullseye. The rashes did not respond to any steroid creams or any antifungals. The one on my thigh is still there, but scaled over(it is about 2 1/2 inches in diameter). I have had such tremendous fatigue it is ridiculous, pain in my neck, shoulder joints & knuckles, and a horrible itchy rash all over my body. The bullseye on my thigh and the sore on my back look the same now...faded and sort of scaly but they still itch and bleed if I itch them. The one on my breast has left a faint scar. Now I have to contend with the daily all-over rashes, hoping they do not get infected. I am monitoring everything I eat. I wash with Vanicreme soap and unfragranced shampoo. I have halted all perfumes(which is very difficult for me, lol). I wash everything in my home with fragrance and dye-free detergent. I do not think what I have is an allergic reaction. I also want to mention that I went to the ER with 2 kidney stones in mid-July with a severe UTI and blood in the urine. Since then, I have had non-stop UTIs. As soon as I am off antibiotics the UTI returns. I still have a rash even when not on antibiotics. My mother thinks I have Lyme and one of my best friends had a daughter with lyme but they are not from IL though) and they all have been trying to get me to get tested for Lyme for a couple months now. Also, my father has a friend in Kentucky who was diagnosed & treated for Lyme this year, just wanted to throw that in, lol. My doctor is stumped and I think now he is just fed up. I went in yesterday and inquired about Lyme and he said there were no deer ticks in Illinois! He stated that deer ticks cannot survive in this state or any state below IL because they like the colder northern states & Canada. He also said that a bulleye rash has nothing to do with Lyme!! I about fell over with shock. I am very new to this but even I know what he said is completely false(I have been doing my homework). How could a MD be so incredibly uninformed?! He has set me up to see a dermatologist but the appointment is 3 weeks away. I do want to see the derm. and try to figure this out but I would also like to play it safe and be tested for Lyme(my mom & friends finally made me listen!). My urologist is stumped at the frequency of my UTIs also(the hubby doesn't have a uti). I think all my symptoms are related, I don't know why but I do. I do not know everything(gosh I wish I did!), I can only express what my gut tells me. I would like some hard evidence and answers. Feeling and looking like this is beyond frustrating and I just want to get better and be back to my normal self! I would love to hear from anyone and all responses are welcome. The information I have found here is invaluable. I have found so much pertinent info on Lyme and other things as well. The people here know more than my doctor, that's for sure! Thank you for letting me vent:)
Posts: 50 | From Midwest | Registered: Nov 2009
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I'm sorry you are feeling so bad. If you still have the rash, I'd recommend taking a picture of it so you have it to show future doctors.
You also may want to start a new thread here in seeking doctor if you would like to find a doctor near you. The people who send out the lists don't keep checking threads for new posts.
Also, feel free to start threads in other parts of the forum, too. There is bound to be someone who has experiences similar to yours!
Again, welcome to the board, I'm glad you found us. I got Lyme in SOUTHERN Ohio, so yes, it is here, and no, it does not need to be from a deer tick only.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
i sent pm to beth/newbie above in HER own post w/names.
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