This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, Joint Pain issues, Living with Lyme Disease, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments.
I believe I have Lyme Disease but am having a hard time getting a doctor that is educated enough to do the appropriate testing. I was diagnosed 4 years ago with fibromyalgia, and IBS. I do have chronic pain that feels like arthritis and is worse when it is cold or rainy. I get frequent headaches, fatigue, muscle twitching, weakness in limbs, occasional nausea. Most recently when my grandmother passed away last year I started getting the feeling like my skin was crawling. It worsens when I try to relax. It was so bad one time, I went to the ER because I could not stop itching. I had literally itched my legs until they bled. It felt like microscopic bugs I couldn't see were crawling all over me. Sometimes I feel like someone poked me with a needle, and at times when I shave my legs it feels like I shaved over a sunburn and my legs will feel like they are on fire. I wake up in the morning with so much pain and weakness in my legs it feels like I rode a bike 10 miles. My boyfriend noticed when I sleep, My arms and legs move and twitch uncontrollably. My family doctor diagnosed it as restless leg syndrome. He put me on Klonopin so I can at least fall asleep now but I am still twitching and moving my legs and arms all night. Around the same time of my grandmother's death my I started getting low grade fevers, night sweats, chills, and my lymph nodes began to swell for no apparent reason. They swelled in arm pits, bikini line, but mostly my tonsils. About 3 months ago I noticed a bulls eye mark on the palm of my hand almost the same size as a quarter, which I have attached a photo of. It has never itched, had bumps, or caused pain. It is more less like a tattoo that showed up one day. My family doctor did give me cream to treat ring worm, which did absolutely nothing. I do not recall being bit by a tick but I was in an area heavily infested with ticks the year before I was diagnosed with fibromyalgia. We had been picking wild blueberries in the woods and I seen a tick crawling on the top of my hand. I quickly flicked it off and it was not attached at all. When we got home I found a tick crawling on our dog but she had not been bitten either. I checked her really good, plus she was on Frontline. I looked myself over really well and didn't see any bites but a couple days later I had a tender spot on my head behind my ear that was quite aggravating. I thought I had been bitten by a deer fly because they were bothering us that day as well. About 3 weeks after our trip to the woods, I became violently ill. I had diarrhea, and vomitting so severe that I could barely hold down water. It lasted about 6 weeks and I lost 25 pounds during that time. I thought the illness was due to stopping a narcotic medication I had been on from a car accident. The doctor gave me meds to counteract the "withdrawal symptoms" he thought I was having but the meds did nothing to help. I am now scheduled to have my tonsils out because the swelling and pain has become unbearable. I sometimes wake up in the middle of the night choking on them. I also have a growth that formed a year ago just above one tonsil that looks like a skin tag about the size of a pea, so they are going to remove that also. So far the only lab work my family doctor has done it the Titer Test, which he claims shows I don't have Lymes Disease. I have not read any place where this test is recognized as a test for Lymes Disease. I believe I was misdiagnosed with the fibromyalgia and think that I have had Lymes Disease for at least 4 years now. I was not bit by a tick on the palm of my hand but had read some place that if Lymes Disease goes untreated for a long time you can get bulls eye marks appearing in random places. Is this true? Can tell me where I should go with this next? Is there any way to test my tonsils for Lymes once they remove them? Any advice would be greatly appreciated as I am getting my tonsils removed on August 6th. Thanks in advance!
You have the classic symptoms of Lyme and bartonella. Every gland in my body is swollen including tonsils. I was misdiagnosed with fibromyalgia, IBS, put on klonopin for restless leg, told I had MS, Lupus, hoshimotos. It won't hurt to take your tonsils out but you will remain swollen if you have Bart's.
You should contact ILADS dot Org and ask for a Lyme literate doctor, LLMD for short. You can also google Lyme doctor and the city you live in. The LLMD will use IgenX labs which will give you the best results. Most LLMD will treat you first based on your symptoms before you get blood tests back. You may have another co- infection as well.
I never got any bulls eye rash but with Bart's, I break out daily in little rashes on my hands and these long streaky rashes that have become less raised over time but can still be seen. I take Benadryl daily for the hand rashes.
Bart's affects you neurologically too, insomnia and anxiety are common with it.
I am sorry you are going through this but others will be telling you to find a LLMD as your next step
We are here for you. Let us know what other questions you may have. I have brain fog, and so I hope I am clear enough for you. Good luck.
Welcome -- I would do as Mojo suggests: find a Lyme specialist.
ILADS is the main voluntary group for Lyme specialists, and their referral function is at
contact [at] ILADS [dot] org
I also just google/searched for
and got lots of hits -- if you try variations on that, using a city name instead of the state name, it will lead you to more possibilities.
AND I just searched for
michigan lyme disease association
and they have a website and a facebook page etc. Some local associations like that are super, but others kind of limp along, so keep your antennae up -- it's a fast-changing area of medicine, and we patients have to stay skeptical.
The name(s) of docs these sites and organizations send you may or may not work for you, because Lyme is cutting edge medicine. If you like, check back with us as things go along and we can give you comments from our own experiences to compare to. We're not medically trained, but we've been where you are, medically speaking.
I have read that Lyme bacteria use up magnesium (Mg) in the body, and it helped me to take Mg supplements (any kind ending in "-ate", like malate, aspartate, orotate, etc.), but be sure to tell your doc if you are taking Mg, so the doc can figure that in to your symptoms and presentation.
Let us know how you do, okay? You've been through so much already, and as the saying goes: "When going through h*ll, keep going." We'll be waiting for you over here on this side!
Everything you describe is consistent with Lyme and possibly coinfections. Little nymph ticks like to bite behind the ears as it is a well hidden spot. It is very easy to miss an itty bitty tick. Even your violent illness shortly after your blueberry picking is consistent with early onset. Many have described it as the worst flu of their life that eventually eases up, but chronic symptoms continue. Even the increase in symptoms after your grandmother's death is consistent with Lyme. It often flares up and gets worse after a major stress. I developed my second chronic symptom, shortness of breath/air hunger, after my husband's emergency surgery.
I tested false negative twice, once on a blood test and once on a CSF test. I tested diagnostically positive at IGeneX on their Western Blot. I believe IGeneX will do a PCR test on tissue. Ask the doctor who is removing your tonsils if s/he is willing to send samples to IGeneX. If that is a problem, then ask what lab they are willing to send a sample to for a Lyme PCR. You'll have to make sure this is arranged up front. In the meantime, get tested at IGeneX. They even do a better job of finding coinfections. Make sure you get tested for Bartonella, too.
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