posted
Hello, I have read over Lyme symptoms and obviously I'm here because I have had many. I got sick in Sept. of '11 and never really recovered. I've had CBC's done, and other tests to rule out viral infections and other obvious things. All is "normal" while I still am not back to normal after four months. My remaining symptoms are:
Mouth sores - on the cheek, never go away. Tongue sores - come and go and hurt Painful lymph - neck has improved, but very painful armpits, shooting pains/burning feeling, some in groin and backs of knees hurt. "Feels" like infection. Anxiety/depression, lack of motivation - most of it because I don't know what I have or what to do! Muscle twitches mostly in legs
When I got sick, it was like the flu, night sweats, BAD sore throat and swollen tongue, burning mouth. Many symptoms resemble mercury toxicity too, which hasn't been ruled out. Will try to find a Lyme Doc. but was looking for feedback. I'm not around places where ticks are a lot, but two weeks prior I did go for a walk and was in the weeds picking up apples. Thank you
-------------------- lj Posts: 34 | From Wisconsin | Registered: Jan 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I'm not medically trained, but I can tell you that I had a lot of the exact same symptoms as you. Especially regarding the swollen tongue and throat plus a high fever and I also had a spotted rash.
The first office I went to couldn't find a cause to the symptoms but believed the rash/fever was Lyme. They gave me amoxicillin for 10 days and after the ELISA test came up negative I never heard back from them. I did tons of tests after that for all different things with a new doctor All my blood work was normal also. They gave me doxy for 28 days in a low dose and it did nothing to help. Then they gave up and sent me to a rheumatologist and I wasted over a month waiting for that appointment. He was absolutely no help whatsoever.
I had previous joint pain and fatigue for years but the severe symptoms never got better after the flu-like illness in the early fall. I had a ton of joint pain that kept getting worse and many many other symptoms that kept appearing and increasing.
I ended up having Lyme and babesia. Fortunately, it was confirmed by testing. It was already in the late/chronic stage by the time I went to a LLMD. They believe that I already had Lyme and then was reinfected.
I think you should try to find a LLMD as soon as possible. Lyme and co-infections get worse the longer they are allowed to manifest and it makes it much more difficult to treat.
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi, It's very possible you could have been infected while picking apples!
All your symptoms do resemble Lyme and possible Co infections.
One of the first symptoms is feeling like you have the FLU, anxiety is another.
On this site go to (seeking a doctor) and say where you're from.
I'm glad you found this site - ask as many questions as you wish. The faster you get treated, the better chance you have to get well. If a tough road, hang in there! Feel free to PM (Personal Message) me anytime.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Thank you for your replies, I appreciate it. I have posted for a Dr. on the other page. Does it make any sense to ask my "regular" doctor to run a test, or should I go straight for the LLMD? Medical bills have piled up lately! I may have more questions later.
-------------------- lj Posts: 34 | From Wisconsin | Registered: Jan 2012
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posted
I already thought of one. I have a rash, but it's not the bullseye rash. It's on my chest and is red and sort of flat, blocthy, shiny (like stretch marks) and spread out. I got it about 2 weeks into being sick and it's not gone away. Thanks
-------------------- lj Posts: 34 | From Wisconsin | Registered: Jan 2012
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Any kind of rish is very common with Lyme and Co's.
I still get rashes after 5 years.
If yours is (like stretch marks) and spreads out, it could be bartonella: You can send us photos and will look at them.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
SOunds like Lyme and Bartonella (common co infections)
Run to an LLMD.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Painful lymph nodes. muscle twitching, anxiety, and red marks that look like stretch marks are all symptoms of bartonella. You might get sore feet or shins too.
Don't have your regular doctor run tests unless he just draws the blood and you send it to IGENEX labs. You can call them and ask for their special kit. If they send it to your doctor is it free. If they send it to you, I think it is $15.
Test results do not always come back positive when you are infected because your immune system needs to recognize the pathogens to produce antibodies to them. That is what the test is looking for - antibodies.
Lyme suppresses the immune system so it does not make antibodies. Many times you will not show a positive result until you have treated for awhile. That is why it is good to see an LLMD to get a clinical diagnosis based upon symptoms.
He/she will give you drugs for the diseases you seem to be infected with and see if you respond. Almost everyone has multiple infections which makes treatment difficult because it requires different medications to treat them.
Doxycycline is a good drug to start with because it hits borellia and ehrlichia and is somewhat effective against bartonella and babesia BUT it is just a beginning.
I am not trying to confuse you. I just want you to know that if you use one drug and get worse, it does not mean you do not have lyme. I means you are not using the right medication to affect your dominate infection.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Thanks for the great info! How would I attach a picture of the rash (or anything for that matter).
-------------------- lj Posts: 34 | From Wisconsin | Registered: Jan 2012
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Look at the bottom left side here. Click UBB Code is enabled - under (Quick Reply)
Here's the code for attaching Images:
Displaying Images To add a graphic within your message, just enclose the URL to the image as shown in the following example. In the example above, the UBBCode� automatically makes the image visible in your message. Note: the "http://" part of the URL is REQUIRED for the [IMG] code.
Some forums may disable [IMG] tag support to prevent objectionable images from being viewed.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
thanks, I will try it. BTW I found a good Dr. about 1.5 hours away already!
-------------------- lj Posts: 34 | From Wisconsin | Registered: Jan 2012
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
IJ200, glad to see you found a Doc so soon.
Did you try and send the photos of the rash?
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I remember being in your shoes. That was me last summer - very, very sick and no one could find the cause until an urgent care doc ran a Lyme test and two bands came back positive. Luckily he was enlightened enough to know that was a positive test. Anyways, I was actually a little relieved the day I found out I had Lyme because it validated that I knew I was really sick and at least I could now start to get the right treatment.
I hadn't been near the woods. You don't have to go in the woods anymore to get Lyme. It's all around us. I think I probably got it from gardening/weeding in my yard. I used to tromp around in the English ivy without giving it a second thought. Not anymore.
I also wanted to say that there could be some value in having your regular doctor run a Lyme test. Don't run the Elisa. Ask for the Western Blot and make sure you get a copy of the test yourself. Most insurance companies will cover the Lyme tests if they are done at a standard lab (like Quest or LabCorp) but not at Igenex. Mine came back positive so I didn't need to pay for the tests at Igenex. And you can always do more testing at Igenex once you can get in to see your LLMD.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Thanks for this advice. I will see if the Dr. will run the Western Blot when I go in next week. Then I will consider an LLMD if I don't get anywhere. Interesting that I could have just gotten it in my yard. This has been a very four months!
I tried to add a picture, and I see the list of options below, but I don't get it.
-------------------- lj Posts: 34 | From Wisconsin | Registered: Jan 2012
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posted
The pains in my lower legs (like growning pains) and sharp pains in my feet have gotten worse. Also the soles of my feet hurt and feel hot at times. Cramps in my hands and arms as well, and the painful under arms. The pain and diarrhea are the biggest symptoms left, my energy is better. I'm afraid I'm losing vitamins with the diarrhea and can't gain weight. Oh, and the stiff neck, just saw the chiro again for that today. Overall body symptmos - frustrating with no diagnosis! Looking forward to doing a Lyme's test. I also had a Mercury filling removed one month before becoming sick.. another option but so controversial. Sigh..
-------------------- lj Posts: 34 | From Wisconsin | Registered: Jan 2012
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posted
Your leg/feet/neck symptoms are similar to symptoms i had. I am being treated for for Lyme and Bart. and symptoms have dramatically improved. Not gone but manageable. Hang in there and make sure doc does adequate testing for these diseases.
Posts: 3 | From Metro Boston | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
SEA BUCKTHORN OIL has really helped the aphtous ulcers in my mouth and the burning that I had for years.
Treating the infection(s) also helps but, during the process the this is the only oil that works for me. I tried them all. I don't think there is another oil on the planet that I did not first try. But SBO did is very soothing.
This is so far the best price I've found from a good source. I use at least 4 oz. a mouth, sometimes more. --------------
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