my paresthesias include burning. At first I just got mild tingling, but over time burning became more common for me, and I still deal with it daily. The worst areas for my burning sensations are on my face (feels like sunburn on my cheeks) and in my forearms.
I often get a feeling of cold water going down my legs when I walk. When this symptom is active, with each step, it feels like cold water is running down my leg.
I don't think I've ever gone totally numb anywhere, just a lot of altered sensations.
For me the burning is usually not my worst symptom, so I don't think it's as strong as what others have.
In my case, usually the burning sensation is magnified by small increases in temperature of my skin. For me the burning is quite bad to deal with since it is on my butt. It tends to occur in the same locations of my body, whereas the tingling tends to be a bit more randomly located.
I have all of the various sensations too, sounds like we all pretty much do.
Burning is my main complaint, by far. My feet burn mostly and it can be excrutiating. Then, the burning travels all over my body. It can be anywhere and includes dripping water sensations, tingling (especially in the heat) and just creepy crawly sensations. My feet almost feel like when I was playing in the snow all day as a child, then I came in and tried to step my cold feet into a hot bath - ouch! I even tried that Rebuilder where you put your feet in a bath and run electric currents through them. I sent it back, not sure it would work with my neuropathy. It may have some benefit for other forms of neuropathy. I've tried a TENS unit too - the verdict is still out. I just keep taking Neurontin, I think it takes the edge off but its not a miracle cure.
For me it's in my feet and fingers. It is especially worse in the morning, on the soles of my feet, like hot coals. However the neurological symptoms are the worse!!! I want MY brain BACK . My question is will it take IV's or will the doxy 200mg every 12 hours take care of all of this?????
I've also had every hard to explain paresthesia including burning, numbness, tingling, crawling, vibrating, buzzing, and water dripping off of head. Sometimes the numbness is deep and I would swear my face is drooping, but it never is. My neuro symptoms are almost all on my left side, and I once went completely numb all over on my left side. It mostly just comes and goes.
I also get a weird feeling of the blood flowing through the left side of my face, hard to explain. Almost like there is impaired blood flow there and in my feet sometimes.
I am starting to accept that it will never completely go away. I have had periods of "remission", but it has always returned. I have been at this for just under a year now and haven't tried IV's yet (although I did try IM).
I have had prolonged periods of numbness down my left side as well. It starts on my face and runs in a line down my neck, back, cheek, hip, side of leg to foot. It's like someone drew a line. It feels numb but there is really no true loss of sensation. I had an MRI during an acute episode of this and it was normal. It has lasted for months at a time.
I think burning may have been one of the first symptoms I had, but dismissed it as I must have pulled a muscle or something. My first symptoms were a stiff neck which also burned like fire and the muscle twitches with numbness and tingling in my fingers and toes. I also had flu-like symptoms.
How long do I need to stay on doxy 200mg twice daily before my head clears up and I stop feeling light headed? Or should I be switched to a different antibiotic, as I have seemed to hit a plato in the last 2 weeks (lots of stress lately, I know that is bad for me to heal) Can the doxy stop working? I go to the Infectous disease dr again in a few weeks so would like some feed back. He seems to think IV's are best for the brain clearing up, however It is a 85% chance and very $$$$$$, even with ins, GULP. Flagyl sound like the cure all for cycst. The dr said in the medical world there is no proven text that it works like the antibiotics do. I would love to hear how to approach this with my dr at the next visit. Thanks for all the info.
I have been on doxy 200mg every 12 hours since december 20th 2008. I am seeing an infectous disease dr who goes by ilads and not cdc for fighting this late stage lymes. I was terribley ill and off work for 5+ weeks in dec of 2006. Mri's , western blots, cardiogram, thyroid, etc was all checked along with mental and neuro specialist nothing but a quircky tsh of my thyroid, had to stop my levothyroxin to function part time at work again. I wish I knew then what I knew now. I begged to see an infectous disease dr as I could not afford one not covered by ins. I spent alot for money for specialist to tell me something is wrong with me physically, but not what I was sent for at the time and it was up to my primary md to figure that out with tests. The primary asked (since I work in the medical field, I suppose) what I thought it was. I said it has to be lymes. So after a neg IGENEX test in june 2008, but I had + and ind bands where it mattered, the md sent me a refferal to a infectous disease dr and told me to wait to get in to him because he was the most aggresive at therapy. So I did. At the the ID dr request another Igenex test was done in sept 2008. Now since the time this all began I never was on anything but thyroid meds and of course a couple diff antidepresents to help with coping with the thought that I thought I had some terrrible disease. Now off of zoloft since seeing 2 pyscologist, and their diagnosis was, "FIND a MD who will listen to you, there is something physically wrong NOT MENTALLY" THANK GOD, I wasn't crazy or was I??? 2 years of the crazy fight yes I feel sick, DR's say well you look fine on blood tests. SO back to my diagnosis, In december I started my fight with this disease that is so complex. I wish I could find the right cure or answers to put an end to the maddness. What about you what is your story? I'm pretty new to this site. Since jan 2009. But have found that what people talk about is important to our road to health. It has helped me not to stop my anibiotics (herx every 28 days about, almost didn't make it through the first one, WOW is all I can say) but that was all my ID dr. had to hear and he said they (lymes) were running GOOD! I see the ID dr this week and hope he doesn't say IV or he's done with me. I would like to try flagyl and maybe some ceftin to change the battle before we start the IV's. I would like to avoid the dangers and cost with that route.
Yes... I have numbness in feet. I also get tingling in my arms/hands. The numbness isn't completely numb either. It is just an altered sensation (very hard to explain) cause I can feel it, but it's like my legs/feet aren't mine! I also get the feeling of cold water running down my legs and occasionally on my face. I have not yet been dx'd but find realize we all have a lot of neuro. problems. However my neuro, told me I have no neuro disorders or problems!! I too have been tested for MS twice... all tests normal... Am very anxious to find out what my lymes test reveals!
Hi all..was diagnosed with lymes 3 month ago and was given doxy for 2 weeks. My doctor said test results didnt give her much of a clue weather it was lymes or not but she diagnosed lymes with the bulls eye rash. My question is 2 months on i still feel dodgy with a burning sensation below my breast bone and dull eyes...could i still have lymes? My doctor said its in my head and 2 weeks doxy would have delt with lymes.
Welcome to MedHelp -- sorry to hear what you are going through.
It sounds like your doc followed the standard approach to Lyme: it's hard to get and easy to cure with a couple weeks of antibiotics. Unfortunately, that approach is (in my view and that of many others) seriously outdated information.
The test results are dodgy, never very precise, and a doc is supposed to use the tests as one clue, but not the deciding factor.
Also, 2 weeks doxy may not be enough, because Lyme has the ability to hide from antibiotics and usually needs longer treatment than most infections (with some exceptions: standard treatment for tuberculosis is 18 months of antibiotics, so the long term treatment approach is hardly news.)
Also, your doc may not have tested you for other diseases the Lyme ticks often carry, called "co-infections." There are several of these illnesses that need different testing and different treatment from Lyme, but regular docs usually don't think about that.
Your doc is following what many would say is an outdated approach. Bottom line: if you are still having symptoms, then you still have the bug. Some docs call this 'postLyme syndrome', where they say you must be well but your body is just over reacting to a now cured infection. Lyme does will tell you otherwise.
And importantly: the sooner you are properly diagnosed and properly treated for the right length of time, the more likely you are to get fully well and to do so more quickly.
If you need help finding a Lyme specialist, let us know what area you live in and we can give you some ideas on how to approach the search.
Good for you for not just giving in to your doc's dismissive attitude! Keep going till you get some real answers and real treatment, if that's what's needed. Take care -- we're rooting for you.
Two weeks will definitely not cure it. Even the overly rigid IDSA says three weeks (who h has a significant failure rate). Test results are useless in the beginning because it takes the body 4+ weeks to crank out enough antibodies to show up on a test. She was right to diagnose on a bulls eye rash alone, as only Borrelia causes it.
You need more antibiotics, probably a few months worth now that it has had a couple months to re-establish itself. You need a new doctor. You will not change the mind of the one you have. Go quickly...the longer you wait, the harder it is to get treatment and the harder it gets to treat.
Hi! I think I may have this...I feel like this is the only place where I can find people describing my exact symptoms! It's strange but I almost feel relieved right now. I would be interested in knowing where I can be tested by someone who specializes in this. I live right outside the Chicago area. Thanks!
I'd suggest you start a new thread on this site, by clicking on an orange-brown button near the top of this page that says POST A QUESTION, and make the 'question' something like 'need LLMD near Chicago'. That will get attention instead of being buried here at the bottom of an old thread.
Also I would try:
1 -- Send an email to
contact [at] ILADS [dot] org
and tell them you are looking an LLMD near Chicago. ILADS is Intl Lyme and Associated Disease Society, which is the main voluntary group for the more 'progressive' Lyme docs.
2 -- Google/search for something like
You'll be amazed at the resources out there! Let us know if you have any questions about what you find -- we're always happy to share our thoughts.
Hi, So sorry you've been dealing with the symptoms for a year. Would you believe I lived in Austin, TX, had a bulls eye rash and took three rounds of oral antibiotics and still kept getting sick, that was approximately 9 years ago. I was tested for Lyme twice and came back negative. Finally about 4 or 5 yrs ago I moved to Reston, VA and my knees were swollen and I could barely walk, I was probably 48 years old, too young for osteoarthritis. Finally went to the right rheumatologist and told him I had been tested for Lyme twice. He asked if my joint fluid had ever been tested and I said no. He tested it and sure enough it came back positive. Only problem is he didn't treat me long enough with IV antibiotics so I'm still getting sick off and on if I work too many hours or workout too vigorously. You're lucky you're headed in the right direction so soon in your illness. I sooo wish all this info had been out there for me so long ago. I wish you the best and I'm sure you're going to be well before you know it. Take care.
Can I just say that I am so glad I'm not alone on this?? I've been terrified that the constant burning sensations throughout my body are due to something more serious than Lyme, such as MS. I took about three months' worth of Doxy and I still have the burning. Maybe my symptms aren't so strange after all.
I have had tingly burning sensations mainly on my face tongue and lips...novocaine/sunburnt feelings... I have tested positive to the first part of lyme 1.2 ... I have just had the western blot awaiting results on that... Anybody know of any drs in Miami area that deal with lyme as my neurologist seems confused that the first part of test was high...He started me on Elavil but In haven't started it... thanks...
You truly are NOT alone. We've all been where you are, in one way or another. Not everyone has exactly the same symptoms, due partly to different immune systems and often due to having bonus diseases the Lyme ticks carry in addition to Lyme (called 'co-infections'). After taking your history, a Lyme doc will know what co-infections to test for and treat.
Doxy works in a very recent infection, but if you were bitten or could have been bitten longer ago than a few weeks before you started treatment, doxy may not be effective, because the longer Lyme has been around, the more likely it is to hide in your body in slimy shields the bacteria make to protect them from your immune system -- there are meds that can break through these 'biofilms', but doxy is not one of them.
Docs can believe that they are Lyme docs, but they may not be practicing up to current standards as set forth by ILADS, the International Lyme and Associated Disease Society. You can email to
contact [at] ILADS [dot] org
and tell them what city or near what city you live in, and they will send you names of Lyme specialists near you. Oddly enough, infectious disease docs are often not up to date on Lyme diagnosis and treatment, so what specialty the doc is in is less important than the doc's point of view. If the doc is registered with ILADS, it's not guaranteed that the doc knows what s/he is doing, but it's a good sign. If the first referral name you get from ILADS is a doc that you don't click with, get another name and try again.
Also always get copies of ALL tests run on you. Doc A may not see anything useful in a test, but when Doc B reads it, there may be a whole different point of view in play.
You are doing what I would do -- keep a wise eye on the doc to be sure you understand and agree with his/her approach.
... and here's why: Elavil is an anti-depressant, not an antibiotic. Anti-depressants don't cure bacterial infections. And neurologists are well known for not 'believing' in Lyme as a serious bacterial disease that needs to be treated as such. It sounds like the doc thinks you have emotional issues and not a bacterial infection. I would find a new doc. You don't need to tell the neurologist you are seeing another doc. It's none of his business if you don't want to tell him.
Do get copies of the test results ... and it may be that the doc was giving you Elavil just to help you feel better till the test results are in, but neurologists as a group are famous for not 'believing' in Lyme. So I'd find another doc in any event, but you are entitled to copies of the tests, and do show them to your new LLMD.
To find a true Lyme specialist, email to
contact [at] ILADS [dot] org
and tell them what city you live in or near and how far you can reasonably travel. They will send you the name(s) of ILADS docs near you. ILADS stands for International Lyme and Associated Diseases Society and is the main voluntary group for MDs who understand that Lyme is a serious illness that need proper testing to see if the tick that brought you Lyme also brought another infection altogether, which about half the time, the Lyme ticks do. These 'co-infections' usually need different meds from Lyme.
Lyme is curable, but accurate diagnosis of Lyme and any co-infections is necessary so the doc knows what and how to treat it. Non Lyme specialists just don't understand or believe this.
I'm not medically trained, but that said: Elavil might help you feel better and be worth taking, but it won't cure a bacterial infection like Lyme.
Let us know how you do, and how we can help, okay? Best wishes --
I'm convinced I have Lyme and my symptoms started 4 weeks ago with burning and numbness in my hands. feet and then chest. That led to heart palpations and the feeling of being fit by a truck. I have been on doxycycline for almost two weeks now and although the extreme has subsided, the burning and heart issues come and go. Just wondering if this sounds familiar or if you had any heart palpitations?
My main symptoms are cold sensation (water/ice) that appear randomly all over my body as well as hot sensations (burning/stinging). I also have chronic neck and head muscle pain. I don't actually feel cold or hot, it is just sensations of this. In recent years my neurological symptoms have come back after an upper respiratory infection twice and slowly subside over 6 to 18 months. I have no fatigue or mental impairment. My neurologist tested me for the standard auto-immune diseases. I'm also considering getting tested for the more advanced antibodies for neuro gluten autoimmune antibodies, not the standard ttg panel.
I plan on getting tested with the new antigen test that comes out this year 2014 that was developed by George Mason University in Virginia and Ceres Nano. It should be FDA approved. This is the first test that tests for the antigens directly, instead of the antibodies.
Yup, mine is mainly in my butt and my physiotherapist said I had piriformis syndrome. First it started in my hip, about 3 months after knee surgery. Then it spread to my buttocks, thighs, and now I get the tingling in my feet and fingers and burning in my back and abdominal area. My Igenex tests for Lyme came back Neg. I'm not convinced that I don't have Lyme, but the burning and gastritis and broken down knee cartilage are the worse of my symptoms. The burning is daily, some days worse than others. My neuro has me on low dose elavil to control the pain but it only helps somewhat.
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