So I have had a million symptoms for about 2.5 months now, and my western blot from Igenix came back positive last week. From what I've been reading, it seems like my symptoms were somewhat atypical from most.
For me, my worst symptoms by far are muscle aches in my calves and hands/forearms, shin/skeletal pain, and body/mind fatigue. I never had a fever or swollen anything.
Has anyone else experienced anything similar? I'm being treated with doxycycline, but i'm wondering if I might have a co-infection or something too.
Many of my early symptoms were what you are describing. They would come and go sometimes overnight. Hopefully, you can get started on meds before you feel worse. I noticed you are from OR. I got my tic bite in the Cascade Mountians.
You could very well have a co-infection or 2. Your symptoms are not unusual.
Read Burascano Treatment guidelines, google it, he gives an idea of symptoms of Lyme and co's. Hope you found an LLMD to treat.
The aches and cramping may be due to magnesium (Mg) deficiency. Lyme bacteria use up Mg in their reproductive process, and the American diet is already a bit short on Mg.
Try any Mg supplment ending in "-ate", such as Mg orotate, malate, aspartate, citrate, etc. Be sure to tell your doc you are supplmenting so s/he can take it into account.
Ditto mojo's comment about possibly having co-infections, bonus diseases the Lyme ticks carry about half the time. They need separate testing and meds, but not all docs realize that. It's why seeing a Lyme specialist is important.
If you go get a second opinion, be sure to take copies of all your tests so far -- a Lyme doc reads things differently from a nonLyme doc.
bdonahue, what did your muscle/skeletal aches feel like? For me, it's not a "flu or cold" like pain, but a more stabbing/pressure like pain that hits a part of a muscle or area. And been one of my fairly constant symptoms, although it does come and go.
It's hard to believe this can all be caused by lyme disease... the only real exposure i've had to ticks this year was hiking in eastern Washington and Portland Oregon. And everyone says lyme is not too common around here. I must have been outrageously unlucky. It's just hard to believe this is what i really have sometimes...
Mojogal and meagan, I am really starting to believe I might. I read that the co's hit you a lot faster and harder than lyme.. and that was definitely the case with me. I'm seeing an LLMD, and she started me on doxy last week. I've been feeling worse every since I started antibiotics, but I can't really tell if i'm herxing.. it's mostly been gradually getting worse. I think I'll talk to me doctor about co-infections next time I see her.
After the bulls eye (I thought spider bite because WA doesn't have lyme). My whole body felt like it was hit by a truck, different then your worst flu and lasted about a week. Over the next year a small area on my shin would hurt like you described stabbing pressure, then moved to my forearms. I started dropping things, coffee cups, pencils, etc. After awhile the pain involved all of my legs and the bottom of my feet hurt to walk. Right before I got diagnosed my arms and legs were going tingly and numb. All these symptoms would come and go but definitely getting worse. My LLmd thinks I have co-infections bartonella & babesiosis and is waiting for test results. You are lucky you caught this early. I know it's hard to believe sometimes and the treatment feels worse than the lyme, but let the healing begin!
Have you asked your doc about the muscle cramps etc.? That and the fatigue are common in Lyme ... I had pretty bad 'fog brain' too, but some people get symptoms worse in the body than in thinking process.
It can take a while for the doc to get all the co-infections identified, so you may find (as you report these symptoms to your doc) that other meds are added and/or add'l tests are done.
Since my brain was so foggy when I was sick, I kept a daily symptom log on my computer and printed it out and took it to my doc to read at the next appointment -- because my memory wasn't good enough to look back and give a good history since the last appointment. My doc loved it. And it certainly beat hearing me say, "Gee, I don't remember."
I had columns for
--how I feel -- including specific symptoms (like headache, muscle aches, sore soles of feet, popping joints, whatever)
--how I slept and a short list of what I ate
--what prescription meds and nonprescription [vitamins, supps] meds I took, and how much of each.
Sometimes it takes a while for all the co-infections to show their evil faces, because they can hide behind the other infections and not show up on tests, so keep reporting to your doc any changes (good or bad) so the doc can take it into account. Lyme and its coinfections are often not single-stop diagnoses.
You say: "From what I've been reading, it seems like my symptoms were somewhat atypical from most."
That's common, to be atypical -- if that makes sense. We are all a bit or a lot different from each other, partly depending on the strain of Lyme, which co-infections, and your immune system function. The only thing constant about Lyme is how inconsistent it is in so many of us.
You also say: "For me, my worst symptoms by far are muscle aches in my calves and hands/forearms, shin/skeletal pain, and body/mind fatigue. I never had a fever or swollen anything."
I was like you. I described my symptoms as feeling like a cross between the flu and a hangover. Magnesium supplements can help, but it won't cure the Lyme.
You also say: "I'm being treated with doxycycline, but i'm wondering if I might have a co-infection or something too.'
Did your LLMD test for anything other than Lyme? If not, I would ask politely, 'Is it possible I also have other infections from the tick?' and see what the doc says. I've read that about half the 'Lyme' ticks also carry co-infections, so the odds are 50/50 that you do have something else lurking.
You say: "I'm seeing an LLMD, and she started me on doxy last week. I've been feeling worse every since I started antibiotics, but I can't really tell if i'm herxing.. it's mostly been gradually getting worse. I think I'll talk to me doctor about co-infections next time I see her."
Feeling worse can indeed be due to the dying bacteria releasing their toxins into your body as the bacteria are killed by the antibiotics (which is the definition of 'Herxing.')
But DO report how you feel to the doc at the next appointment. (And think about that symptom log I suggested. There is so much to forget that may be significant to the doc.)
And an important side note: doxycycline works against Lyme ONLY very early in the infection -- if you have been infected longer than a few weeks before treatment began, the Lyme bacteria may have retreated into areas in the body called biofilms, which are slimy shields the bacteria hide in and the immune system and doxy cannot reach.
Doxy is often the first line of treatment in Lyme, but if you are past a very early point in the infection and/or have co-infections, then doxy will in all likelihood NOT be enough. I had had Lyme for months and months before diagnosis, and I also had babesiosis ... I was NEVER prescribed doxy, but was instead treated first for babesia with two other antibiotics, then when babs was gone, I was treated with two other antibiotics (not doxy) against Lyme.
--->>> If your doc always treats with just doxy, then I would find another Lyme doc for a second opinion. <<<--- You don't have to tell the doc you are getting another opinion, but it's a reason to get copies of ALL your tests, so you have your own little file to take to a doc for a second opinion without ticking your current doc off, if you decide to get a second opinion. pure self-protection. Even well-meaning docs (Lyme and otherwise) have blind spots and make mistakes. Be in charge.
You say: "It's hard to believe this can all be caused by lyme disease... the only real exposure i've had to ticks this year was hiking in eastern Washington and Portland Oregon. And everyone says lyme is not too common around here. I must have been outrageously unlucky."
Ticks can't read maps and don't know where they are, but they are happy to feast on stray humans walking by. The more out-of-touch levels of the medical community -- that is, the ones who sit in Atlanta in the Centers for Disease Control (CDC)-- have it as an article of faith that Lyme is rare, hard to get and easy to cure. They are wrong. Every epidemic in history started in a small area and spread.
It's a lot like the early reaction to AIDS years ago: the CDC doc in charge got on a TV news conference and flatly stated that you could not get AIDS unless you were gay or Haitian. At that time, it was the data the medical profession had to work with, but they foolishly assumed they had a complete data set already. They were so wrong, but docs operate on constructs of current knowledge, and the CDC position on Lyme is STILL that is is "hard to get and easy to cure". So wrong.
You say: "It's just hard to believe this is what i really have sometimes..."
Yeah, I was pretty surprised too when I got diagnosed. 'Outdoorsy' for me had meant rolling the trash cans down to the curb once a week, but I likely got Lyme touring college campuses with my kid. Never saw a tick, never had a rash. But I had Lyme and babesia. It's everywhere.
You say: "I've been supplementing with Mg Citrate on and off for a couple months.. I haven't really noticed a difference, but I might not be taking it regularly enough."
Mg won't cure Lyme, but it may help the muscle cramps/aches at some level. I took (and still take) 400 mg of Mg twice a day. It won't cure what ails you, but it can help with the muscle aches and also helps sleep. Try taking a full dose regularly for at least several (3-4) weeks and see what happens. The American diet is often deficient in Mg to start with, and if you get a bunch of bacteria slurping up the Mg you do get, then you can easily become deficient.
You ask: "Could there be any other reason for the muscle aches?"
Sure, it could be too much exercise, or some other illness. But if you're not exercising too much, then try dosing Mg regularly for at least [3 or 4] weeks (I'm guessing) and see if it helps. It won't hurt, unless you get diarrhea, and then reduce the dose slightly. I'm very sensitive to EVERYthing, and I never had problems with Mg supps, only got better sleep and less muscle aches/pains. Try the obvious solution and see if it works before discarding it.
You ask: "Does lyme physically damage muscles? My muscles feel vaguely crampy and achey... but they don't ever cramp or get tight."
That's how my Mg deficiency felt, and it also made my brain fog worse. It doesn't damage the muscles, to my knowledge, but just makes it harder for them to function smoothly. Increase and maintain a higher dosage and see what happens after at least a couple of weeks. It can't hurt, and might well help. If you get diarrhea, I've read it's too much, so back off on the dose a bit. And be sure to tell your doc you are taking Mg and how much so it can be factored in.
You say: "I know something is going on down there, especially since all my bones pop and crack constantly. It doesn't hurt, but its kind of freaking me out. Is all this due to lyme toxicity or something?"
Lyme bacteria like to hide in cartilage, where there is low blood flow, and the bacteria are harder for the immune system to find when they are hidden that way. It's not toxicity, it's just Lyme.
Whew! Hope that helps. Let us know how you do and if you any other questions -- take care! We've all been where you are, one way or another.
if your doc says no more tests and only take doxy, I would find a new doc. You don't have to tell the current doc you are going doc-shopping, but I would do so.
The old-fashioned view of Lyme is that it is always killed off by a couple weeks of doxy, but that works ONLY if you get treated almost immediately after getting bitten, and many people (incl. me) don't know when we were bitten -- and if you do see a tick stuck you, it doesn't mean you were not bitten last year or a few months ago by another that you *didn't* see.
If my doc were the old fashioned kind who thinks only of Lyme (not co-infections) and only of doxy, I would find another doc. It's a real split in the medical community, and many well-meaning docs are on the wrong side of history in this battle.
If you need help finding a good Lyme doc, you can:
1 -- post a message here saying 'need LLMD near Portland OR', and someone may send you a private message ('PM') back through this system. State and local medical boards may not approve of more aggressive Lyme treatment like I had, and the docs who are willing to BE aggressive for the patients' sake can get in trouble with the med boards -- so the docs try to stay under the radar.
That is why we do NOT post LLMD's names in the open here, to protect the docs and to preserve for ourselves the ability to find an LLMD.
If someone sends you a 'PM', there will be a little (1) next to 'My MedHelp' in the blue bar at top of this page. Click there and it will take you your private mailbox on this system.
2 -- search/google online for something like
or LLMD Portland OR
or wherever you can get to. That will sometimes pop up local patient groups with good leads.
3 -- email to
contact [at] ILADS [dot] org
and tell them where you live and how far you can travel, like "Need LLMD within 50 miles of Portland Oregon" and they will send you back the name(s) of doc(s) that fit your request, if they have any. If they don't, try expanding the search area and submit another request.
4 -- search online for something like
Oregon Lyme (or 'Oregon Lyme disease')
and you might be surprised what you find. Patient groups familiar with the area are great resources, but if the first doc is a dud, see another. Lyme doesn't just go away by itself, but the hassle to get well is SO worth it.
Sorry for the data dump, don't get overwhelmed by it. If you have really bad brain fog, ask a friend to help with the search for a doc.
Take care, keep us posted, let us know how we can help. Best wishes to you --
since your current doc tested you through IGeneX, that is a very good sign that the doc is clued in about Lyme, so you might not need a different doc.
Most of the clueless docs don't use IGeneX, so maybe have a conversation with the current doc about whether co-infections were tested etc. and what plans the doc has for meds for the co-infections, if you have any. Then decide whether to stay or go, based on the response.
Thanks for all the info! I will start taking the MG supplements and see if it helps. It's so hard for me to stop myself from worrying about these symptoms... Thursday night I went shopping and carried my black friday spoils for a couple hours, and today both my arms feel very sore. The kind of sore you would expect the day after a really intense workout. This is so frustrating. I can't wait to be done with this, it's been the worst hell i've ever been through. It's hard to accept there still might be a long road ahead.
Luckily, I happened to live close to an ILADS recommended doctor, and I've been seeing her for treatment. I'm going to talk to her about co-infections and meds when I see her again in a couple weeks.
I CANT WAIT to feel normal again, although it ***** seeing how slow my progress seems to be. I would say that I was hit pretty hard and fast by this disease, but after watching the "Under Our Skin" lyme documentary, I couldn't believe how much worse this can get. It's just awful.
Thanks again for all the info - I like to know as much as i can about what I'm dealing with, and I appreciate anything you can tell me.
Also, since I wont be seeing my doctor until next week, I was wondering if you knew anything about exercising with lyme disease? I've been a couch potato for 3 months now, and I hate it. I would love nothing more than to go back to my 5 day/week bodybuilding and cardio regime so I can prevent losing years' worth of training and effort, but I realize that's not an option right now (did I mention I hate this disease?).
I attempted to go on a run last week, and for the first time in months I had enough energy for a good workout. Unfortunately, I paid for it in the following days with sore legs and extremely painful shin splints/foot pain. I am a runner and in very good shape, so this is NOT something that would normally happen. This kind of led up to my earlier question about whether lyme damages muscles... good news is that this horrible pain went away in about 3 days' time.
I guess maybe I need to find something that's not as hard on my body? Or is it better for the healing process to just sit on my butt?
I'm with mojo -- if you feel up to exercise, start slow and stay moderate. Your body is putting up a titantic battle fighting the infection, so be kind to it.
When you are fully well, you can go back to your previous levels of exercise, but think of Lyme as the bacterial version of a broken leg -- hobble gently as much as you can tolerate without overdoing it, and when you are fully well, you'll be back to marathons.
Light to moderate exercise is good for all the usual reasons, and in Lyme, it's just a matter of not overdoing it. When you are fully well, you'll work back up to your previous levels of activity. Patience, grasshopper; patience.
I saw 'Under Our Skin' when it first came out. By then, I was already done with Lyme treatment and was concerned that someone newly diagnosed or still in treatment would be alarmed by the approach of the movie -- those awful pictures of the scrawny woman still linger in my mind.
Sure, dramatic tension makes for a good movie, but when it focuses on all the extremely bad stuff and doesn't balance with the facts that (1) not everyone gets that dramatically ill and (2) treatment can indeed get you well, then the film unnecessarily leaves one feeling alarmed ... esp. if you've got Lyme, which affects not only the physical body but also messes with hormones and emotions.
You say: "Luckily, I happened to live close to an ILADS recommended doctor, and I've been seeing her for treatment. I'm going to talk to her about co-infections and meds when I see her again in a couple weeks."
I would ask the doc if you were tested for any co-infections, and how the selection of tests was made, that is, based on what symptoms -- just to see what the doc says. Being on ILADS' referral list doesn't mean the doc has passed any test to be an LLMD, because there is no such test. Each Lyme doc does things differently, and some of them are better than others in their understanding of co-infections and other aspects. So keep your antennae up, and if you like, let us know what you hear back from the doc about how the diagnosis was arrived at. Lyme is accompanied by at least one co-infection about half the time, which makes it a coin flip.
The 'standard' Lyme treatment is a couple weeks of doxycycline, no concern about coinfections, and out the door. If your doc is taking that approach, and if you were infected anything but a very short period of time, and if the tests done were not through IGeneX, then let's talk here again.
Lyme is a mighty strain on the body and mind, and it affects everyone differently. I think I had a mild infection for a year or two, and then got infected again with Lyme and babesiosis (like malaria), and that's when I really hit the wall. I went to an LLMD and was diagnosed, and then insisted that my kid be tested too, tho she protested that she felt 'fine' -- it was only after her tests showed Lyme and babesia like mine, and after treatment (which she grumbled about), that she admitted to me that she really had been ill but thought it was just too much school and too much fun all at the same time -- but it turned out it was Lyme and babs, because after treatment, she was her old self again and told me so.
Humans can adapt and excuse a lot of feeling lousy, and Lyme can play that game all too well.
Thank you Mojo and Jackie for the responses. I'm planning to try swimming or maybe biking soon for exercise. I'd like to go running, but I figure I should keep it low impact for now.
I will keep in mind what you said about treatment. My doctor said it can take years to clear out the lyme, so I'm pretty confident she will do what's right. But it's always good to have all the info so I can make sure.
I actually haven't really had a chance to talk with my doctor about the diagnosis yet. She called me over the phone to give me the test results, and immediately started me on doxy and told me to take a probiotic.
I do know that she tested me through Igenix, and she selected the "acute" lyme test, as opposed to the chronic lyme test. When I see her next in a few weeks, I'll get all the info. Personally, I'm not sure how long I've been sick. I do know that at the beginning of August this year, I had this strange bug bite on my leg. It was big and red, but not itchy. It did not have any rash surrounding it. A month later, I started coming down with symptoms. This might be crazy, but I almost wonder if I've had it longer though. For many years, I've had periods where my personality feels a little flat and I have word block problems. Usually happens once every month or two, and lasts for a week or so. I've just accepted it all these years, but now this problem has been blown up a lot bigger these past few months. It seems a little crazy that this might be lyme related, and that I could have had lyme for years and years, but I'm thinking I might just run it by my doctor and see what she thinks. Maybe it's nothing.
I agree with your inclination to talk w the doc about having been infected longer than just recently. I think it happened to me too ... for quite a while, I felt just dragged out and foggy from time to time, but figured I was just working too hard, and didn't have a reason to think it was anything more than that.
Then after being in a lot of grassy, woodsy places on vacation, I was suddenly worse -- similar symptoms as before, but more and bigger. I dragged myself through 20 (count 'em: 20) MDs until one tested me for Lyme, since everything else had been covered by the 19 preceding docs ... and got a positive test!! But the doc blew it off and said I wasn't sick enough to have Lyme. Yeah, right.
Then I went to an LLMD and got further tests, and the new doc said it was likely that my immune system was pretty strong and kept me in mild misery instead of huge misery for a long time, till I got bitten again more recently. So, no, I don't think your idea is crazy at all.
Your doc sounds on the ball, which is great! Doxy is the usual first stop for a *recent* Lyme infection, but as mentioned above, you don't always know when you got infected -- and that sounds like it might apply to you too. Once Lyme gets settled in, it needs different meds to evict the little beggars, so if your doc is inclined to keep you on doxy, I'd raise the issue with her about other meds if it looks like you have a longer infection than very recent.
When Lyme bacteria settle in and make themselves at home for a while, they create slimy shields called 'biofilms' that keep the immune system (and doxy) from locating the bacteria for the kill. Other meds are needed to pierce the biofilm so the bacteria can be killed.
Also, your doc is probably checking for possible co-infections of other diseases the Lyme ticks often bring ... if the doc doesn't, I would ask why. She may say that you don't have the symptoms of anything but Lyme, which is a reasonable answer, but be sure you have given the doc a full download of ALL your symptoms, because they blend together and it's hard to parse what infections you might have.
Sometimes it happens that the co-infections are hidden by the activities of the Lyme bacteria and the interplay among the bacteria and your immune system, and it can take a while to sort it all out. The important thing is knowing that your doc will keep an eye out for that possibility as your treatment progresses.
A diagnosis is the first step to getting well -- good for you! Keep us posted, and be sure to update your doc with new or changing symptoms as treatment progresses.
Hello again, and THANKS for your responses. I'm about 2.5 weeks into Doxycycline treatment and had a few questions.
Symptom-wise, I can't really tell if I'm having a reaction to the doxy. It doesn't seem to be following a monthly cycle or whatever, but I seem to be getting these flare-ups about once a week that tend to last for a day or two. I'll be feeling like an 8/10 for a little while, then on days like today, I'm down to a 6.5/10 with lots of pain and twitching in my calves. Thankfully, I have not felt nearly as bad as I did when I first came down with this.
I'm getting really tired of living with this, and there seams to be no rhyme or reason to the appearance of symptoms and the pain. I know I tested positive for lyme, but can lyme or co's really cause this to happen?? I'm just worried I got a false positive or something, or maybe need a different antibiotic...
I also have wierd little hives that are popping up randomly on m chest/back, and there are clusters of them on both legs in the same spots.
Ugh this *****. I was on the road to feeling better even before I started doxy, but I just can't seem to break an 8/10 on the wellness scale. Once I start feeling okay, I'll cycle back to feeling not okay. :(
Yes, Lyme is frustrating and tricky. You may be experiencing the symptoms of die-off, when the the antibiotics kill the bacteria, which then release their toxins into your system. It takes a couple of days sometimes for that feeling to go away. It's quite common. Lyme hides in your body and suppresses your immune system, so it's not a quick cure like an earache. It takes time and patience, and usually months to kick a Lyme infection.
For the muscle twitching, try taking magnesium (Mg) supplements. Lyme bacteria use up Mg in their reproductive cycle, and Mg is needed for your muscle cells to communicate and coordinate with each other, so twitching is not uncommon. Poor sleep is another indicator.
Doxy is the old tried and true treatment for Lyme, but it is not terribly effective, from what I have read, if the Lyme infection is more than very very recent. Lyme bacteria create slimy shields in your body to hide in, where the immune system cannot detect the bacteria, which accounts for a good bit of Lyme's persistence (along with its ability to suppress your immune system).
If you think you may have been infected longer ago that a few weeks before starting the meds, then ask your doc about some other antibiotics. So-called mainstream docs who are not Lyme specialists still rely on doxy for anyone with Lyme, and if your doc is in that school of thought, then you might want to consider a different doc.
Also, were you tested for co-infections? they are separate infections carried by the same ticks, and they need separate diagnosis and usually different meds from Lyme. Again, a nonLLMD will often not think of this factor or will disregard the possibility. I am about the least outdoorsy person you can imagine, except for walks in the park, and I managed to get Lyme and babesiosis (like malaria, but carried by the Lyme ticks).
The rise and fall of your symptoms and feeling lousy sounds like something is going on, and a second opinion from a Lyme specialist may be in order. NonLLMDs often just don't have the point of view to deal with lyme and its nasty little friends.
In your situation, I would think about a second opinion. You don't need to tell your current doc you are doing that, but try to quietly get copies of all your test results from the current doc ('for my files' is my favorite excuse, because it's so nonthreatening) and then decide what to do. A different doc may see things differently. No aspersions cast on your current doc -- Lyme is a tricky beast and it gets missed fairly often.
"It's hard to believe this can all be caused by lyme disease... the only real exposure i've had to ticks this year was hiking in eastern Washington and Portland Oregon. And everyone says lyme is not too common around here. I must have been outrageously unlucky. It's just hard to believe this is what i really have sometimes..."
The official mantra of many MDs and public health officials is: 'we don't have Lyme disease here.' Balderdash! ticks can't read maps and don't know they aren't supposed to be in Oregon. If there are trees and greenery and furry little animals (including your cat), then there are ticks. Lyme ticks are everywhere.
That turn-a-blind-eye approach to Lyme is right in line with the medical profession stating very very very seriously when AIDS first was recognized that you could only get AIDS if you were (1) gay or (2) Haitian -- because the early infections were in (1) gays and (2) Haitians. Docs, for being really well educated, are sometimes very dumb.
If you have Lyme, you have about a 50/50 chance of having one or more other infections the Lyme ticks carry, and that needs separate diagnosis and treatment. So please do think about getting another opinion -- Lyme is in the same family as syphilis, and that always gets treated because it doesn't go away by itself ... and neither does Lyme.
Don't freak out, just find a Lyme doc! The sooner, the better. You do NOT need to tell your current doc you are getting a second opinion. It's your private business, and you don't owe explanations.
If you need help finding a lyme doc, just search online for 'oregon lyme' and you will have a ton of hits for patient groups who can help you find a good lyme doc. If you have test results from your current doc, take them with you, might save a little money and time. My favorite ploy with a doc is to ask innocently "Could I have a copy of those test results for my files?" I think by law they have to give them to you ... you paid for the test, after all.
The worst you will find out is that you don't have Lyme, but given the time of year and your location ... well ....... keep us posted!
awright, just one more thing I meant to say: Lyme loves to live in cartilage, because of the low blood flow that keeps the immune system from homing in the Lyme bacteria. So aches in the joints and muscles are not uncommon, whether from low magnesium or bacteria in the cartilage. If it's Lyme, the symptoms will stop after treatment.
You sound just like me! I basically only had one symptom before I got diagnosed and that was dizziness. It came out of nowhere and stayed.
Once I started the doxy, all heck broke loose. I have constant muscle twitches now, especially in my legs. I have rapid heart beats and heart palps. I get hives ALL THE TIME. I think a lot of my hives at least are from stressing about the current symptoms I'm having. My symptoms don't cycle, they are CONSTANT.
I also tend to think "Do I really have Lyme?". Because I only ever tested band 41 positive on the Western Blot which is not Lyme specific. But besides my LLMD, I've been to numerous holistic/natural doctors who have also picked up on Lyme and co-infections.
And like you, I was starting to feel better before I got diagnosed and started the doxy. I even started going back to the gym. Now I'm on the doxy and I can't even walk fast without my heart racing and getting out of breath. My LLMD said it's affecting my heart but I can't help but think that the doxy is causing that too.
How long have you been sick? It's been about 3 months for me. Do your legs hurt too? Mine are constantly hurting, and seem to twitch more when the pain gets more intense.
I sure hope I do have lyme... I've had tests on tests and have come back negative for any other illness. I've seen a neurologist and rhuematologist and according to them everything is fine. Even so, I can't help but think sometimes that I might have some sort of autoimmune disease like lupus... here's hoping I don't.
It would be pretty cool if I could just recover and go back to living my normal life, and not be in constant pain with no end in sight... I wish the same for you!
Neurology and rheumatologt are two medical specialties that are very well known for not believing in Lyme as anything serious, and those MDs are not likely to diagnose Lyme.
I went through *20* MDs of all specialties before finally getting a Lyme diagnosis -- and the MD who ran the test that came back positive for Lyme then assured me, "Oh, you cannot possibly have Lyme. I have patients with Lyme, and they are all ... near death." That is a direct quote.
This was however the first of the 20 MD to even *consider* Lyme as the source of my ailing. It is so far down the list of possibilities for most MDs -- including the ones who would normally pick up on an infectious disease -- that they dismiss it out of hand, even when a positive test shows comes back from the lab.
If you find an MD who is willing to give you a diagnosis of an autoimmune disease like lupus, you would likely be treated with steroids, which suppress the immune system. Be aware that Lyme disease is a bacterial infection, NOT an autoimmune disease, and the treatment for an autoimmune disease is steroids, which suppress the immune system -- and that is the exact opposite of what is required in a bacterial infection (including Lyme.)
There are many posts and stories to be found about how much worse people with Lyme become when they are treated with steroids, because with no immune system fighting the Lyme, the infection runs wild and the illness and symptoms get much worse. It's like throwing gasoline on a fire.
Please find a Lyme specialist -- the MD can be a general practitioner (GP) or an internist or any specialty, but what counts is that they understand Lyme. How can you be sure you have found an MD who understands Lyme and doesn't do what the neuro and rheumy are trying to do to you? The best step currently is to find an MD who is a member of ILADS, the International Lyme and Associated Disease Society, which is a voluntary group for MDs who think bigger thoughts about Lyme than the docs you have been seeing.
If you email to
contact [at] ILADS [dot] org
and tell them what city you live in or near, they will email you with names of MDs near you who are ILADS members. Not all ILADS member docs are as good as they ought to be, like in any group of people, so if you find a dud, ask ILADS for another name.
If you ask the docs you are currently seeing about getting a second opinion from an ILADS doc, they will at a minimum recommend against
doing so, and may even refuse to see you again if you do see an ILADS doc. That's how bitter the split is in the medical community, and why I would do so quietly.
I was quite ill for over a year before the 20th MD ran the Lyme test (and then told me it must be wrong). I have an old friend who had Lyme some years ago, tho, and so I knew it was serious and it could be treated successfully. I found an ILADS-member doc, was diagnosed with Lyme and babesiosis (like malaria), was treated with antibiotics for babesia and then for Lyme, and I am well and just fine now, several years later.
You CAN recover and go back to living your normal life, not in constant pain. Find an ILADS MD for a second opinion.
Also, you should know that Lyme bacteria use up magnesium in the body, and magnesium deficiency often causes the kinds of aches and pains you describe. You can get supplemental magnesium at a drug store or online, but be sure to get a subtype that ends in "-ate" (such as magnesium malate, orotate, aspartate, citrate, etc.), because it is more easily absorbed by your body. There is a common magnesium supplement combined with calcium (one brand name is 'Cal Mag') but I have read that it is not very effective. Go with straight magnesium as described above, and be sure to tell your Lyme doc that you are taking it and how much per day, so the doc can factor that into the situation.
After I was treated (and it can take up to a year, depending on what other infections the Lyme ticks brought you), I went back to 'living my normal life' -- and you can too. Finding the right doc is the key.
This sounds like something out of science fiction, I know, but it's for real. Take a look at the ILADS [dot] org website and do a bit of reading, but don't be overwhelmed by it. There is a terrible split in the medical community, and you are smack in the middle of it, as is pretty much everyone who finds their way here.
Let us know how we can help -- now go get your life back!
Thanks Jackie - I know I should just accept the lyme diagnosis without worrying if it's something else, but it's hard sometimes :( I just have so many symptoms... and I overlook a lot of them because it's easier to focus on the ones that are more in your face.
From day 1 I've had this weird throat thing going on too. I have constant mucus, my throat will "feel" kind of tight and strange (this comes and goes), and I swear it feels weird to talk. I'm not slurring my words or anything, but I stumble a lot and sometimes don't say words properly, or just not as smooth. Can lyme do this? I thought people who had these symptoms were pretty much close to death already.
Sorry I'm complaining so much on this thread, I know it's kind of a buzzkill... but I really appreciate the support!
I started taking Mg supplements this week, so we'll see how that goes. Here's hoping it helps!
Please don't apologize for stating your concerns -- ! If you can't do that here, where CAN you, y'know? We're all here for understanding and support and information, and that includes how we feel about our lives getting taken over by Lyme for a while.
About your speaking difficulties, Lyme affects everyone differently, and confusion is also a common aspect of the infection. Do mention it to your MD next time you are there, just so they have your updated symptoms in the file so they can all be tracked and considered.
I kept a daily log on my computer in a chart form --
-- what meds and supplements I took at what doses
-- what I ate
-- how I slept and how I felt overall, with specifics about symptoms
I would print out the new entries since the last appointment and take them to the current appointment. It helped my doc track things and see trends, and it kept me from blanking out. He kept them all in my file.
Mg helped me a lot, and I still take it now. Keep us posted!
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