I’ve been to a million doctors over the past few years trying to figure out my many symptoms, and I’ve been tested for lyme/rheumatologic diseases twice.
My lupus and arthritis tests came back negative, and my lyme test came back with only one present abnormal band: IgG P41 Ab. I just don’t know what to do next!
I’ve been trying to find a good doctor in New Jersey/New York area that can help me and give me further tests.
It seems every rheumatologist covered under my insurance does not treat lyme, and every LLMD I can find is so crazy expensive!
I should mention, I hike all the time with my dog, who is constantly getting ticks. It’s not too far-fetched I would have lyme, but I wish I could confirm it somehow.
If you’re willing to read them all, below is a list of my symptoms:
4. Jaw, neck, back, and shoulders stiffness/pain 5. Bad stomach cramps 6. Diarrhea all the time (every day, 2-5 times a day)
7. Extremely tired and weak 8. Dizziness and sometimes vertigo 9. Nausea/vomiting when experiencing vertigo 10. Fainted once recently after a long run
11. Creaky/popping/super stiff knees (especially after running) 12. Hair shedding way more than usual
13. Tingly/pins-and-needles sensation in calves/shins, forearms, and cheeks/under eyes (really random, sometimes a little painful, usually brief)
14. Strange bug bite from three years ago (a bullseye circular bite on my forearm. I was tested for lyme right away when I got this bite, and results of the Western Blot were negative.) 15. Symptoms last for weeks at a time, then disappear, then come back …
16. I used to run 25 miles a week, and when my symptoms are gone, I start to slowly build myself back up to that. But my legs feel like dead weight—I used to love running, and now it’s such a struggle to do even the shortest jog.
17. I sometimes feel like I am really going crazy! I cry hysterically for days with no reason; I feel drained and can hardly find the energy to move. When my symptoms start to pass, I eventually cheer up and feel better, but it always circles back.
If you know of any NJ/NY doctors that can help, please PM me. I’d love to hear any thoughts about my symptoms or anything at all! I really appreciate you reading through that terribly long description. Thank you so much!
-Jamie
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(breaking up the post for easier reading for many here)
[ 04-02-2016, 08:35 PM: Message edited by: Robin123 ]
Posts: 2 | From New Jersey | Registered: Apr 2016
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posted
Tests don't always come back positive even though we may have Lyme. You've gotten the usual run-around - time to see a Lyme-treating doc! People will be along with referrals.
Best if you repost your symptoms discussion in Medical Questions or General Support and you'll get responses.
Posts: 13116 | From San Francisco | Registered: May 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Definitely sounds like Lyme to me . I am sorry - as your story sounds so familiar to many here. I will PM you with information on a few doctors I know of.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Thank you both so much for your help! I will definitely look into an LLMD! I hope you're both feeling well and working with a good doctor that you like. Posts: 2 | From New Jersey | Registered: Apr 2016
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
posted
For more feedback on your health questions, feel free to post this in Medical .. minus the request for an LLMD since you got the info you need on that.
WELCOME!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I have seen almost every LLMD in New Jersey over the past 12 years. I would be happy to give you my impressions/ recommendations via PM but tell me who you have seen thus far. *****For what it's worth no Doctor in NJ was able to help me. DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Jamie, I feel pretty sure that you have lyme disease. At first, lyme symptoms can be episodic. That happened to me.
For the first 5 years I had undiagnosed lyme disease, I had episodes of symptoms followed by periods of total normalcy. It was crazy!
I never could go more than 5 months without going back into a "sick" episode. My main symptom was extreme muscle weakness that left me unable to stand for more than a minute, unable to hold the phone to my head for more than 30 seconds, and unable to hold my mouth open to have my teeth cleaned.
After 5 years of episodes, the lyme symptoms became continuous. No doctor in the 10 LONG YEARS I searched for a diagnosis ever could find anything wrong with me. Then, I went to an endocrinologist who thought I had lyme disease and tested me for it.
The tests are unreliable, so if you get a negative test, it doesn't mean you don't have lyme.
Your symptoms sound like lyme. Read pages 9-10 of the following document:
Make a list of every single symptom you have and take that to the lyme doctor of your choice. I sent you a name of an inexpensive one in NJ. Generally, lyme docs don't take insurance. So, be prepared to pay money to get your life back.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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. I am sorry - as your story sounds so familiar to many here. I will PM you with information on a few doctors I know of.
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