I just realized I left out a lot of symptoms, but I didn't want to take up too much space. If it would be helpful for me to post my other symptoms, let me know. :)
I think it would be helpful for you to post your other symptoms. I've heard all the ones that you did mention come up in patient's Lyme Disease symptoms. Perhaps this list will help. Also, there are some great people on here who are very knowledgeable and will give you great advice as they have done for me.
Ticks with Lyme Disease are EVERYWHERE except for the Antartica, so yes they are in Michigan. I know of someone who sees a "great" LLMD there. I can get the name if you'd like. Good luck to you. :)
Welcome to MedHelp -- sorry to hear what you are going through.
You have put your finger on the problem in the medical community when it comes to Lyme: the traditional view, formed when Lyme was newly discovered just a couple decades ago, is that it's no big deal, that a couple weeks of doxycycline (a particular antibiotic) is enough to kill it, and that any symptoms remaining after that are just your immune system over-reacting to the now-gone infection.
Those original Lyme-discoverers are still alive and practicing medicine, and their views just don't change, despite new research and the spread of so-called Lyme ticks throughout North America and indeed the world. What we have here is a failure of imagination, that MDs of all people would not think about the possibility of spreading and evolving species. There was similar denial about AIDS back in the ~1980s, but it's taking longer for docs to realize their errors about Lyme. Sigh.
In addition, it turns out that 'Lyme' ticks also (about half the time) carry infections that are unrelated to Lyme and need separate testing and often different medication. A Lyme doc will know that, and based on your symptoms, will test for these so-called 'co-infections.' Babesia, ehrlichia, and bartonella are a few of them. I had Lyme plus babesia.
"All of the doctors keep passing me around, unfortunately without any answers. They won't test me for Lyme because they say it doesn't happen in this state." That's a fairly typical comment. When I was first ill, I went through 20 MDs before one finally (after trying everything else) did a Lyme test on me, which came back positive! And then the doc said, 'Oh, you couldn't possibly have Lyme. You don't look sick enough.' And then she added very gently, 'I have patients with Lyme, and they are all ... near death.' Great, huh.
The 'good' news was that I have an old old friend back East who had Lyme some years ago, so I knew immediately to find a Lyme doc, which I did, and was successfully treated with antibiotics for Lyme and babesiosis (which is related to malaria, but carried by the 'Lyme' ticks).
The statement that "we don't have Lyme here" is absurd: ticks can't read maps, and they are simply everywhere. I probably got my infections back East on a trip, but people in California have them too.
Kathloj (above) has the name of a Lyme doc to give you, and she would likely do that as a 'private message' through this system. Because the state and local medical boards in many places are also ignorant about Lyme, they sometimes revoke the medical licenses of MDs who treat according to the more aggressive treatment standards of ILADS and Lyme specialists, which is why you don't see MD's names here in the open, even if they are well known in the Lyme community. It's a matter of courtesy, as well as a matter of survival: we need those LLMDs practicing, not in jail or barred from practicing medicine!
There is also a Michigan Lyme Disease Association -- they may be able to refer you, and would also be a good source of information of many kinds. Just google/search the association name.
When you do get to an LLMD, keep your antennae up -- not all Lyme docs are created equal, and some are a little ... odd, since they are only human. (I could say that of docs in other specialities I have met too.) So keep your wits about you, and let us know how we can help. We're always lurking around here. :) Take care --
Best wishes to you --
Thank you guys so much for your responses and for the information. I really can't tell you how much it means to me. I actually cried a bit when I saw that someone had responded. If you would like to send me the name of that doctor, I would be happy to have it. Feel free to private message me and thank you. :)
I'll write as many of my symptoms as I can here. I'm often afraid to tell other people about most of them because I'm afraid I'll be seen as a hypochondriac or that people will think I'm not sane. A lot of my symptoms look like they're related to anxiety, but my anxiety levels were quite low right before this all came on. My family doctor dismissed my symptoms as stress related so many times and wouldn't do anything for me until my father called his office in tears begging for someone to do something for me.
Pain in face, head, neck.
Also shoulders, arms, hands, back, hips, legs.
Pain and strange sensations in scalp. The strange sensations sometimes feel like spasms that also happen in my face.
Vertigo or dizziness, unsteadiness.
Palpitations. Maybe not related. I take Atenolol for a fast heart rate, but that would normally keep my heart rate in control.
Hands and feet throbbing.
Sometimes have trouble breathing. Chest pain and tightness.
Burning sensations. Cold sensations.
Tingling, numbness, weakness.
Hot pins and needles everywhere or feeling biting pain in arms and legs.
I've had cold sweats or have started sweating for no reason.
Muscle pain and cramping.
Sometimes feel like I might pass out.
Ringing in ears.
Sometimes have slurred speech or say the wrong words or can't think of the words I want to say.
Difficulty with memory.
Popping sensations? A lot of it happens in my head or forehead.
Stomach pain. Maybe not related. I do have cysts on my ovaries that cause pelvic pain and I can't tell if that's what causes the pain in my stomach or not.
I realize that's a long and crazy list and everything may or may not be related, but most of those are new things that have come up all at the same time and I have no explanation for any of it.
I want to send another heartfelt thank you to anyone who will read this.
Hi. I appreciate your response with all of my heart and thank you for your kind words. I'm so thankful there are people out there who are willing to take the time to help by spreading lots of good information. Thank you. :)
I'm sorry that you had to go through that with so many doctors, but it's really good to know that you finally found a way to treatment. It tears me up to think about how many people are going through something similar.
Are LLMDs considered specialists? Unfortunately, I'm kind of stuck with my family doctor at the moment and my insurance requires me to have a referral from him in order to see anyone. Since he's refused to test me for Lyme, I don't think he'll give me a referral to an LLMD. Is there any way around that?
After reading that article you linked, I'm feeling a bit more frustrated with doctors. I was told there was only three reported cases of Lyme in all of Michigan. The article says there were 165 last year.
I forgot to mention that I'm losing a lot of hair all of a sudden and my hair has barely grown in the last five months. My hair has always grown really quickly. I got my hair cut last September above my shoulders and didn't get another haircut until some time in February and my hair was down past the middle of my back. It's been nearly the same amount of time since my last haircut and it's still at my shoulders. Has anyone had this happen?
Hi again --
Glad we can help. Others will pop up with their comments too, but here are mine:
Lyme affects everyone differently, partly because our immune systems are not all the same, partly because there are different strains of Lyme (I think of them as all being first cousins of each other) that are a little different, an partly (often a big party) are the other infections that the Lyme ticks drag along with them when they bite: as a group, these 'bonus' infections are referred to as 'co-infections'. There are maybe a half dozen of them, and each one need separate testing and sometimes different meds from what Lyme needs. A wise Lyme doc will figure out from your symptoms and test results what is likely, since Lyme etc. gets the body so confused sometimes that the test results seem odd, but a good doc can sort it out.
That said, I don't see anything on your symptom list above that is wildly different from what others have reported. Your list isn't long and crazy at all -- it's good that you are watchful and keep track of what you are experiencing. That's helpful data for your doc in sorting things out. Lyme can sometimes affect memory, because Lyme can cause brain irritation/inflammation and messes with the whole hormone system, so there are a bunch of things affected. The good news is that after I was treated, my memory was fine again. So hang in there.
(My memory was so bad that I would take a list of my symptoms and questions to my appointments, or else I wouldn't remember anything I wanted to relate or to ask, and I kept a daily log on my computer with columns for date / which meds and supplements taken what time and in what measurement or quantity / how I slept and felt / what I ate.)
One thing that may be affecting you is that Lyme bacteria tend to use up magnesium ('Mg' for short) from your body, and the American diet is apparently already a little short in that regard. I started taking Mg when I had Lyme, and I still take it today, along with my daily vitamins. You might want to try some Mg to see if it helps, but be sure to tell your doc when you see him/her that you are taking it (as well as anything else) and in what dose.
You know how babies are all floppy after a bottle of milk? Partly it is from the Mg in the milk -- who knew!? It's that soothing and relaxing and calming. I had one doc (not my Lyme doc) sneer at me and say taking Mg was unnecessary and would give me diarrhea ... so I did a little reading, and it turns out that if you take *too much* Mg, it will give you diarrhea. I'm sensitive to lots of meds and food, but I tolerate Mg just fine, never had a problem, and never got diarrhea. I read that if diarrhea occurs, then back off the dose a bit and work up till you find what your body tolerates.
I still take 400 milligrams (mg) twice a day, which the bottle says is twice the minimum daily requirement, but it suits me just fine -- tho everyone is different.
There are different chemical formulations for Mg, all ending in "-ate" -- such as Mg malate, orotate, citrate, aspartate, and maybe a few more. I have used Mg malate and currently take a blend of Mg citrate, aspartate and orotate all in one capsule. I get it from a vitamin/supplement company online and have been quite happy with their products and prices and service. I'll send you a 'private message' from this system that will go to your own personal email by relay, so your email address is still unknown to me.
The symptoms you listed made me think you might be short on Mg, but I'm not medically trained, and am mentioning this just in case it's useful to you. No obligation.
So, what's next? I would scout for a Lyme doc. There are lots of docs who say they specialize in Lyme, but I've learned to be a bit skeptical -- some of them are 'Lyme deniers' who don't think Lyme is any worse than the sniffles, and a couple weeks of antibiotics is all you need. Uh, no. You can search online for
-- Michigan lyme disease association --
and you will find their website, as mentioned in a previous message above. I don't know anything about them in particular, and don't know that we have anyone currently posting here who is in Michigan, but that's okay -- I would contact the Michigan association and see if they can refer you to a Lyme specialist. If you don't like the first doc, try another.
All this sounds very cloak and dagger, I know, but you'll work your way through it, and your family or a friend might be able to help you sort it out. 'Lyme brain' is what we patients call the confusion we go through due to Lyme -- don't worry, it will go away after treatment.
1st thing to do: look around online for a Michigan Lyme disease association -- some of these groups are better than others, but you might get lucky and get some leads to finding a good doc and friendly support for yourself (like here, only closer to home)
2rd: find a good Lyme doc
3rd: if the first doc doesn't click with you, find another one
4th: ALWAYS get copies of ALL your test results and keep them in a binder at home. You might need them if you switch docs down the line, and it's a funny thing about doc's offices that they don't like 'wasting' copy paper and toner, so sometimes they skip over stuff in your file. Been there.
5th: the doc figures out a diagnosis, and you get treatment
6th: you get well and go back to your life -- !
7th: stay in touch and let us know how you're doing and if we can help. We're often hanging around the water cooler here --
Your new pals -- the MedHelp Lyme gang
Lyme messes with the whole endocrine and hormonal system in the body, and that can affect hair growth. Not to worry, just get the Lyme taken care of, probably be fine.
Hi. :) Thank you so much for your reply. I don't know what I would have done if I hadn't found this place. I was feeling horrified that if I did have Lyme or something else that no one would be willing to test or treat me for it. I will contact the Michigan Lyme Disease Association and see what they can tell me about doctors.
Hugs to you and everyone here.
"Are LLMDs considered specialists?" There are docs who specialize in Lyme, and there are docs who treat Lyme and other things. Usually docs who treat Lyme have another, less specific specialty: my Lyme doc is an immunologist by training. Others are general practitioners or internists or endocrinologists etcc. So I wouldn't worry, and docs don't usually call themselves 'Lyme specialists' anyway.
LLMD by the way is not a medical term or title -- just patient shorthand for a doc who truly *understands* Lyme -- a 'Lyme-literate MD'. That scoops in a whole lot of kinds of docs.
When you have located a Lyme doc you want to work with, then you could go back to your family doc and say, 'I want to consult with Dr X, who is [an immunologist]. Would you please give me a referral.' Or something like that. You don't need to use the word 'Lyme', but that's up to you.
If your family doc won't play ball and let you slide through with a referral, then (if your Lyme doc doesn't take your insurance -- many of them don't take ANY insurance, for reasons we can discuss another time), then you can pay the Lyme doc yourself, 'out of pocket', and get a receipt that you can submit to your insurance company. They will often pay a good chunk if not all of the bill, perhaps classifying the Lyme doc as 'out of network'. Lyme docs understand all this and it works out. If though your insurance will not reimburse without referral from your current doc, that may not work, unless you can convince your current doc that you appear to have some infection that the Lyme doc can treat .. depending on what specialty your Lyme doc is, that might slide by. Dunno. Re-read your coverage and look for loopholes.
My insurance reimbursed me for a big portion of my Lyme doc's visits as 'out of network', and it paid for ALL of my medications prescribed by the Lyme doc -- but my policy didn't require referral from the primary care doc.
Once you know a bit more about what doc you want to see, you can begin to sort out the options on how to approach billing etc.
Thank you! You've been great help. I've just emailed the MLDA. I hope they will be able to contact me with something about doctors.
... and one more thought ... are you sure your current doc would react badly to discussion of Lyme? There are lots of docs who think for themselves, but are cautious because of the way the local and state medical boards approach things. Just a thought.
Hi. :) I don't think I'll have any luck with my doctor for various reasons. He won't test me for Lyme because he says it doesn't happen in Michigan. I went to see him three or four times about my symptoms and he kept insisting that they were all caused by stress even though I tried to make it clear that I had been feeling really good before the onset of these things. I had been through far more stress in my life. I was taken to the emergency room and the ER doctor called him to ask him if I should be admitted to the hospital so that I could be seen by a neurologist. He said no. The only reason I got any referrals out of him was because my father got so scared for me he called his office in tears, crying into the phone and begging for someone to do something. Nobody called back, but when I had my next appointment and I asked if I could see a neurologist, he relented.
I didn't know it until somewhat recently, but my mother saw this same doctor years back. He told her that she didn't have diabetes. She went off her medication and later went into diabetic shock and almost didn't make it. If I had known that before, I never would have went to him. I'm kind of stuck with him for right now because of my insurance and because I need to see the neurologist he referred me to, but I hope to find another doctor who hasn't caused so much suffering.
I'm sorry that I just wrote a whole story there. Hugs and blessings to you.
Thank you for relating all this -- I am so sorry for all you and your family have been through. I've had some great docs -- and some awful ones, so you're not alone there.
I hope your visit with the neurologist goes well. Unfortunately, neurologists in general do not have a good reputation for understanding Lyme disease, but if the doc runs some tests, that will give you more information about what you *don't* have and maybe even what you *do* have [if it's Lyme]. When you have the test results of whatever the neurologist tests you for, be *sure* to get a paper copy of it all (even if you have to fib and say something like 'my parents are interested in seeing the test results') and go from there.
Would your insurance reimburse you partially if you see a doc not in your network?
Your story sounds SO familiar to many of us who have gone through the Lyme maze!! I'm so sorry your doctor won't refer you. I know of some people that have used a walk-in clinic to get their referral. I'm in Canada so things may be different here.
Many of your symptoms are similar to mine, and they're all on Lyme symptom lists including the palpitations (I get those, mainly at night) and the stomach pain - very common esp. if you have a co -infection called Babesia. Anxiety is a big one too, and I think it's heightened at the beginning by NOT knowing what is wrong. After I got my Lyme diagnosis the anxiety subsided a fair bit, and once I start my treatment in the next week or so I'm hoping it will dissipate!
Often with Lyme Disease, along with getting the bacterial spirochete from a tick, one can get other infections such as Bartonella and Babesia from the same tick bite. A good LLMD can clinically diagnose those. Mine did without doing further blood tests, so that saved me some $.
I've sent a FB message to my friend who sees a LLMD in Michigan and I will send you a private message with the name and info as soon as I hear back from her, which should not be long. I know she really finds the LLMD good.
I can relate to not wanting to tell people all your symptoms. Unfortunately we lyme patients have been doubted and brushed off one too many times - and it can come from both the medical field, friends and family. I'm very guarded as to who I speak to about it as I've been scoffed at too many times. It can be an isolating disease but I've found good support on here. I've also found a Naturopath in my own city that is apparently very good with Lyme treatment and was trained under ILADs doctors. I see her for the first time next week. I recently connected with a lady in my own suburb who has Lyme so we will meet and email and be a support for each other.
I will have to decide what treatment route I will follow - naturopathic or the antibiotic protocol from the LLMD that I saw in the US. Take cafe, be strong and keep us posted! I will inbox you as soon as I get that name. :)
My neurologist kept insinuating that my symptoms were stress-related too. I hope you keep an open mind as to what your neurologist will tell you, and I'm guessing he too will deny Lyme. Mine did a nerve conduction test which showed no issues, then did an MRI. He said that if the MRI comes back normal that we'll have to start exploring stress issues. Needless to say, I never went back. I was able to get a copy of MRI from my GP and at about the same time I got the LD diagnosis.
I have sent you a private message with contact info for a highly recommended LLMD in Michigan. Good luck, take care!
Thank you both. I'm sending you guys the warmest, biggest hugs I can think of. I really appreciate your kind responses and your help. It means a lot to know that you guys are out in the world doing what you do. :)
I'm not sure in the insurance will do that, but I will check. I'll be looking for both of your private messages.
Did you or are you experiencing severe headache with your infections? I have had constant pain in my head and there's different kinds of pain. Something that's scaring me is what just happened to me earlier in the day. It has happened several times, but it only seems to happen right before or during sleep. It feels like my head has blown up or been filled with explosives that went off. It's a sudden, extreme pain. The worst I've ever felt, even worse than a migraine. It terrifies me. One of the weirdest things about it is that it will often happen while I'm dreaming and then out of nowhere it will hit me and I wake up. When I wake up, my vision is flashing and it's hard to see. The intensity goes down after I'm awakened and then my pain goes back to the level it's usually at. Every time I go to bed I pray and pray that it won't happen and that it's just my body's way of complaining about the pain in my head while I'm asleep, but I don't know what it is.
About your 'flashing headaches', everyone is different in their symptoms, due to different co-infections and different body chemistry and immune system activity. I haven't had what you are describing, but perhaps someone else here has. You might post a new message to catch someone's eye, titled something like 'Sudden, severe headache pain and lights flashing esp. at night?' All the more reason to find a good doc soon.
I just quickly scanned the message thread above and am not sure if you are looking for something from me about insurance. I don't think so, but nudge me if I'm not remembering.
I think my mind made a mix of the messages and I was confused about who was contacting me for a while there. Sorry about that. Weird things like that have been happening to me a lot.
I hope you're doing well today and feeling good.
Not to worry. :) I just didn't want to drop the ball on my end.
fwiw, I'm quite well now, and I get confused a lot anyway! It's just life-overload on top of everything else, eh? Take care! You're doing fine and plowing ahead.
Thank you. :) I'm happy that you're doing well.
I saw the neurologist today. He's prescribed me Prednisone because the last time I was given steroids by IV my vision improved a little, but I can't tell if that was coincidental. I do know that the steroids made me sick, but I'm also really scared about what's happening with my vision. I'm not sure what to do. If I have Lyme, would it still be okay to be on steroids?
I'm not medically trained, nor is anyone else here that I am aware of, so finding an MD who can advise you on this point would be a very good idea.
That said, prednisone is a steroid that, to my understanding, suppresses the immune system, which would likely mean that the Lyme bacteria would not be held in check as they have been.
In that situation, I personally would check with a Lyme specialist before taking steroids. Do you have any leads to an MD who could give you a second opinion on steroids?