posted
Hi, I recently asked my dr to run a lyme test for me because I have been having on and off joint pain, mostly in my knees. (I live in an area which is heavily populated with deer and I have picked deer ticks off my kids before) I also have sciatic pain, on and off dry eyes, tingling in my toes, and sometimes muscle weekness in my lower legs. My bloodwork showed a positive ANA and a very low positive of DS-DNA. Originally they said I have lupus but I have no other symptoms of it and that seems to be a diagnosis that is thrown out very quickly. My doctor seemed uniterested in ordering a Western Blot. The only other abnormality was a very low Ferritin level. Do these sound like symptoms related to Lyme?
Posts: 22 | From Pennsylvania | Registered: Dec 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
They could very well be Lyme-related. Many doctors rely too much on the ELISA tests, which are ridiculously inaccurate.
I had a hard time getting diagnosed--it took me 9 months!
I never saw a tick on me, although we have many deer run through our backyard, and when it snows, there are tracks that come right up to our windows.
I started off with a severe stiff neck, headaches, numbness on my left side, light-headedness, then it went into palpitations, shortness of breath, visual problems....you name it, I had it.
They ran every test in the book, including a lyme tests twice, and everything came back normal, so I was labeled as just having anxiety and depression.
I finally found a LLMD who diagnosed me with Lyme and Ehrlichia.
I've been treating since March and seeing some light, althoug I seem to be in a bit of a backslide right now.
If you suspect you have Lyme, I would go over to Seeking a Doctor and post your location; someone will give you the name/contact info for a doctor closest to you.
I'm also in PA, so I can PM you my doc's info to at least get you started. Depending on the doctor, you might have a 6 month wait.
Good luck!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Thanks so much for your responses. I will keep reading and post over in the seeking a doctor for more info.
Posts: 22 | From Pennsylvania | Registered: Dec 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I would bet $$$$ it is lyme/coinfections. If you live with deer around you, that is a huge red flag. Our yard was infested with ticks from the deer roaming into it. My 3 young children all became infected, along with my husband and myself. We live in PA too. I was told that so long as I got the ticks off within the first 24 hours, we could not get infected. Well, that is not the case; ticks can transmit infection as soon as they bite you.
Low ferritin can be a sign you may have babesia as well.
I would also watch for behavior changes in your children, as this is often a first sign of infection. At least 50% of the ticks are infected in endemnic areas, so if they have had more than one bite, it is very possible they could have been infected.
My children's cases all came slowly and subtly and I had to diagnose them and get them to an LLMD, against the advice of our pediatrician. It took me over a year to figure it out for the first child.
Some of the many signs in children are red ears at random times in the day, waking up grumpy, insomnia, occasional muscle or joint pains that may come for a few seconds or minutes and then go away, lethargy, sensitivity to tags in clothing, headaches, manic or aggressive or emotional behavior, impulse control issues, auditory processing issues, etc...
Good luck to you,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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If your test comes back negative .. don't rely on it completely. If you have symptoms, there is still a problem! Lyme is not easily picked up in blood testing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
PLEASE PLEASE PLEASE demand a Western Blot test. If your dr isn't willing to do it find one who is! I had TWO standard Elisa testing done which both came back negative.
I continued to get worse, did my own research, went to a LLMD (Lyme Literate Medical Doctor) and had W.B. test done. I have Lyme with coinfections of Bartonella AND Babasia. YOU MUST BE YOUR OWN ADVOCATE!
Power is knowledge, read as much as you can here, this site has been a blessing to me!!!
Remember, you can have a neg W.B.test and still have Lyme.
I would bet the farm by what you're saying you DO have Lyme (ha if I had a farm left to bet--this disease will break you) lol but PLEASE stay linked up with this site (YOU WILL NEED THE SUPPORT OF OTHERS).
God Bless, Good luck and PLEASE keep us informed.
Karen Mc (:
Posts: 423 | From Virginia | Registered: Nov 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
i come up negative on all the lyme tests, but I got the rash, so I know I have lyme.
the Eliza test they use is wrong 50% of the time. As others have said, you need to find a Lyme Literate MD. there are only a few labs in teh country that know what they are doing in regards to reading the test accurately.
And like I said, you can even test negative with them. There was a MD from Stony Brooke (Dr. Volkman) he had about 20 patients that all tested negative for lyme on the Eliza and Western Blot, but he did repeated PCR testing and they all came back postive(PCR actually picks up pieces of the bacteria, where the western blot and Eliza test only look for your immune response to the bacteria).
Only thing with PCR is that it is hard to get a postive because you have to be lucky enough to have a tiny piece of the bacteria in the sample they take.
I'm sorry to say that there is really no sure way to know. You could have lupus or something else, or it could be lyme. this is why you need to see a good Lyme Literate MD. They will be able to evaluate you best. But prepare yourself because even they may not know for sure. In those cases, they sometimes recommend giving you antibiotics for a while and see how you respond to them.
Good luck
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I'm with tickbattler. I bet 2 dollars. Broke from Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
also, follow your iron indices carefully. I had a very low ferritin also (5 ng/mL) and that was after taking iron for 3 months. The iron disorders doctor following me wanted my ferritin level at 100 before I quit taking iron supplements.
I ended up with a uterine ablation, and taking 200 mg of elemental iron for 2 years before I quit taking the supplements. I still take 65 mg iron 4 times a week to keep my ferritin level over 50.
Discuss this with your doctor. Take supplements (as he suggests). Then monitor your ferritin level and other iron indices on a monthly basis until you know that what you are doing is moving you in the right direction.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thank you everyone for all your comments/advice. I'm going to ask for the Western Blot first. At this point, I can't afford any dr who doesn't take insurance. I understand that Lyme is much easier to cure the quicker you are diagnosed. I did find one dr that was on the list someone sent me, that is in my insurance plan. So I am hopeful that he is Lyme literate. Good luck and God bless to all of you!
Posts: 22 | From Pennsylvania | Registered: Dec 2009
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posted
Thats great that you may have a Dr you can see that will accept your insurance. Even if he (she) isnt LLMD remember there are lots of things (supplements-vitamins-herbs) etc you can do do help your condition along the way.
Please stay connected to this site...read read read and ASK questions. Keep a notebook of
1) symptons etc
2) info you find that you want to remember or compose together.
Cause, trust me you will absorb so much info it will be hard to process and your head will spin.
Good luck, God Bless and let us know how it goes.
Hope you have a Merry Christmas
(: Posts: 423 | From Virginia | Registered: Nov 2009
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