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Lyme in Michigan?
Hello to everyone here. I hope that you're all well. :) I have been through several places on this site asking questions and looking for answers through my undiagnosed health struggle and if someone could read this and share some thoughts with me, it would really mean a lot.
Does anyone here know of many cases of Lyme in Michigan? Has anyone here had Lyme without the distinctive rash?
Almost five months ago I suddenly began having a lot of very strange and painful symptoms that I hadn't been having before, but the ones that bother me the most are the visual symptoms and pain. Some of my visual symptoms are blurriness, double vision, visual snow, flashing and whiting out. The pain is everywhere, but a lot of it is in my head, face and neck. I don't know if any of my symptoms are typical for Lyme, but I was being evaluated for MS and I've been told that Lyme is one of its mimics. The neurologist tells me that he doesn't think I have MS. The neuro ophthalmologist found that my optic nerves are swollen, but doesn't think that has anything to do with my visual symptoms. There were herniated discs found in my neck that are pressing into my spinal cord, but the neuro surgeon doesn't believe that's causing my symptoms.
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. The only reason I brought it up to the doctors was because my dad reminded me of a couple of unexplained rashes I had before this all happened and he asked me if I thought I might have Lyme because last Fall we had a field mouse in our house.
I did recently see a posting at a restaurant for a benefit dinner. It's for someone with Lyme disease to help with the costs of their treatment, but I don't know if they got the disease here.
Thank you to anyone willing to read this and maybe help a little with some information. Blessings.
Does anyone here know of many cases of Lyme in Michigan? Has anyone here had Lyme without the distinctive rash?
Almost five months ago I suddenly began having a lot of very strange and painful symptoms that I hadn't been having before, but the ones that bother me the most are the visual symptoms and pain. Some of my visual symptoms are blurriness, double vision, visual snow, flashing and whiting out. The pain is everywhere, but a lot of it is in my head, face and neck. I don't know if any of my symptoms are typical for Lyme, but I was being evaluated for MS and I've been told that Lyme is one of its mimics. The neurologist tells me that he doesn't think I have MS. The neuro ophthalmologist found that my optic nerves are swollen, but doesn't think that has anything to do with my visual symptoms. There were herniated discs found in my neck that are pressing into my spinal cord, but the neuro surgeon doesn't believe that's causing my symptoms.
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. The only reason I brought it up to the doctors was because my dad reminded me of a couple of unexplained rashes I had before this all happened and he asked me if I thought I might have Lyme because last Fall we had a field mouse in our house.
I did recently see a posting at a restaurant for a benefit dinner. It's for someone with Lyme disease to help with the costs of their treatment, but I don't know if they got the disease here.
Thank you to anyone willing to read this and maybe help a little with some information. Blessings.
Hi. :) I've gotten a list of doctors from them, but I'm just waiting for someone to help me find information about each of the doctors and decide which one is best to see.
The good news is that the ophthalmologist said you were good to go. If you do not have any kind of paperwork (like a summary of the ophth's findings), then ask his office for a copy of his conclusions for your own file at home.
Then I would find a different doc altogether, taking all your past test results with you. Whether there is anything in the existing paperwork that is useful, I dunno, but you'll never know if you don't have copies of all of it to show a new doc.
Have you contact ILADS for a referral to an LLMD near you?
Also if you search online for
-- michigan lyme --
you will find lots of leads.
That's the best advice I can give you. When my 20th doc finally tested me for Lyme and it came back positive, I was told very gently that it couldn't possibly be Lyme, because I wasn't sick enough (!?) -- but I have an old dear friend in the Midwest who had Lyme for a long time, so I knew that I had to find a Lyme specialist, and doing THAT made all the difference.
So collect the data you can from past tests etc, and get a real Lyme doc! I know you have zero energy for this, so get a friend to help you. Really.
Then I would find a different doc altogether, taking all your past test results with you. Whether there is anything in the existing paperwork that is useful, I dunno, but you'll never know if you don't have copies of all of it to show a new doc.
Have you contact ILADS for a referral to an LLMD near you?
Also if you search online for
-- michigan lyme --
you will find lots of leads.
That's the best advice I can give you. When my 20th doc finally tested me for Lyme and it came back positive, I was told very gently that it couldn't possibly be Lyme, because I wasn't sick enough (!?) -- but I have an old dear friend in the Midwest who had Lyme for a long time, so I knew that I had to find a Lyme specialist, and doing THAT made all the difference.
So collect the data you can from past tests etc, and get a real Lyme doc! I know you have zero energy for this, so get a friend to help you. Really.
Hi. Thank you for replying. It helps me with the freaking out I've been doing.
I've seen an ophthalmologist twice. He told me everything looked good and that I should see a neurologist. He was actually pretty rude and didn't want to answer a single question I had. The neurologist sent me to a neuro ophthalmologist. He found that my optic nerves were a little elevated and suspected I might have IIH, but I'm not over weight so I didn't think that was the cause. I had a lumbar puncture and my pressures were good, so he basically told me he doesn't know what's wrong and to go back to the neurologist.
I've seen an ophthalmologist twice. He told me everything looked good and that I should see a neurologist. He was actually pretty rude and didn't want to answer a single question I had. The neurologist sent me to a neuro ophthalmologist. He found that my optic nerves were a little elevated and suspected I might have IIH, but I'm not over weight so I didn't think that was the cause. I had a lumbar puncture and my pressures were good, so he basically told me he doesn't know what's wrong and to go back to the neurologist.
Here's another idea: after I had been diagnosed with Lyme and was on antibiotics, I went to see my eye doctor for a regular check up, and having been beaten into the ground by too many docs already who would just sneer at me when I said I had been diagnosed with Lyme, I was figuring that I would get the sneering from the eye doc too.
But no!! It turns out that of all the medical specialists, eye docs take lyme seriously! My eye doc is not an optician (who makes glasses) or an optometrist (who can figure out what prescription your glasses should be), but is an *ophthalmologist*, meaning a real MD who specializes in eyes. ('Ophthalmos' is Greek for 'eye.')
So I went to the ophthalmologist and started to apologize for having been diagnosed with Lyme, figuring the sneering would start any moment, but he looked directly at me and said, "I am glad you told me. This is important to know." And then he went ahead and did the eye exam and everything was all right, but I can't tell you how comforted I was to know that this doc 'believed' in Lyme.
I even said to him at the end of the appointment that I had gotten the brush-off from other MDs (like my gynecologist) when I would mention in the course of a check up that I had Lyme, and he indicated that ophthalmologists generally take Lyme very seriously.
Given that you are having noticeable eye symptoms, I would, if I were you, go to an ophthalmologist very soon and get a work up from him/her. It's also possible that the ophthalmologist might know of a good Lyme doc nearby who could work with you overall.
You know what it going on inside you, and these nurses etc. are just guessing, but believe in yourself and what you are feeling and experiencing. I remember how unreal it all felt when I was ill, and yet I wasn't even convinced that I WAS ill ... since no one else could figure it out. I had begun to doubt myself.
You don't need to wait to see an overall Lyme doc to see an ophthalmologist. Just do it. When you call to make the appointment, tell the person you talk to that you are having symptoms that may indicate Lyme disease and are concerned about it, and how soon could they see you. That way they know you're not just someone getting a 'regular' eye exam to see if you need glasses or whatever.
Let us know what you do, okay? And I say: go for it. Make sure it's an *ophthalmologist* and not an optician or optometrist.
But no!! It turns out that of all the medical specialists, eye docs take lyme seriously! My eye doc is not an optician (who makes glasses) or an optometrist (who can figure out what prescription your glasses should be), but is an *ophthalmologist*, meaning a real MD who specializes in eyes. ('Ophthalmos' is Greek for 'eye.')
So I went to the ophthalmologist and started to apologize for having been diagnosed with Lyme, figuring the sneering would start any moment, but he looked directly at me and said, "I am glad you told me. This is important to know." And then he went ahead and did the eye exam and everything was all right, but I can't tell you how comforted I was to know that this doc 'believed' in Lyme.
I even said to him at the end of the appointment that I had gotten the brush-off from other MDs (like my gynecologist) when I would mention in the course of a check up that I had Lyme, and he indicated that ophthalmologists generally take Lyme very seriously.
Given that you are having noticeable eye symptoms, I would, if I were you, go to an ophthalmologist very soon and get a work up from him/her. It's also possible that the ophthalmologist might know of a good Lyme doc nearby who could work with you overall.
You know what it going on inside you, and these nurses etc. are just guessing, but believe in yourself and what you are feeling and experiencing. I remember how unreal it all felt when I was ill, and yet I wasn't even convinced that I WAS ill ... since no one else could figure it out. I had begun to doubt myself.
You don't need to wait to see an overall Lyme doc to see an ophthalmologist. Just do it. When you call to make the appointment, tell the person you talk to that you are having symptoms that may indicate Lyme disease and are concerned about it, and how soon could they see you. That way they know you're not just someone getting a 'regular' eye exam to see if you need glasses or whatever.
Let us know what you do, okay? And I say: go for it. Make sure it's an *ophthalmologist* and not an optician or optometrist.
Hi. Thank you for sharing all of that information with me. I hope one of the doctors will be able to see me sooner and that they'll be of some help. The flashes in my vision and my other symptoms are getting to be too much for me after so many months and not having any answers. It looks like there's a strobe light going off. Nurses in the ER have tried to convince me it's just migraines, but if these visual symptoms were migraine auras, wouldn't they have gone away at some point instead of being pretty constant?
Good for you, getting that list of docs! (I remember when I was so bad off with Lyme ... the idea of organizing myself to get out of bed in the morning was a major effort -- but it will get better w/ treatment).
It's sometimes hard to tell how good or bad a Lyme doc is ... because Lyme docs try to stay verrrry quiet so they don't have the state or local medical board come down hard on them for treating Lyme etc. aggressively.
But I did what you said: I snooped around online and found enough information to give me a pretty good feeling about my doc-to-be. I had an advantage, tho, because my doc is pretty well known in the Lyme community already, and he doesn't need to be discrete about his practice, being so well known.
The docs who aren't totally 'out' in the medical community may try very hard not to show up on Lyme boards etc., because they don't want to get in hot water. That's why you see us refer here on this site to "Dr A" or "Dr B", to avoid outing the doc if s/he isn't already 'out'.
If the doc is a member of ILADS, that's a good sign, but the docs may not advertise that either.
Lyme can mess with just about every body part ... bladder included. It comes and goes over time, in different body parts. Some people have bad 'Lyme brain' -- meaning foggy thinking and mental fatigue. Others have muscular and joint aches and pains. Sometimes the variant symptoms are because Lyme ticks carry other disease in addition to Lyme, called as a group 'co-infections', and that messes up the symptomatic indicators.
A Lyme doc knows that, and I think a lot of the confusion among nonLyme docs who are confronted with a new patient with a lot of strange symptoms just don't understand how variable Lyme presentations are. So I'd say just be observant of your own symptoms and even keep a brief daily log or calendar of how you feel generally and a short list of the day's symptoms. That kind of data is very helpful to a doc who is trying to figure out what you have (Lyme plus other infections, possibly) and over time how your treatment is progressing.
It's the exact opposite of other diseases, where a specific set of symptoms is common -- Lyme is the other way around: a real grab bag. I personally think that is why nonLLMDs are so lousy at diagnosis and treatment of Lyme and its possible co-infections, because docs are taught to look for a specific set of symptoms to narrow down an illness to a specific infection.
.... but Lyme doesn't play by those rules. And because Lyme can mess with memory and thought process, keeping a short daily log of how you feel and what meds you took and how you slept and anything else that seems out of the ordinary is a good thing to do, and take it with you to your appointments. The first thing my Lyme doc would do was take my log and go review it for a few minutes before coming in to talk with me. He could see patterns that were meaningful medically.
So yes, Lyme can mess with pretty much the whole body in different ways over time, so note it all down! It's like planning an invasion in a war: prepare, prepare, attack!!!
It's sometimes hard to tell how good or bad a Lyme doc is ... because Lyme docs try to stay verrrry quiet so they don't have the state or local medical board come down hard on them for treating Lyme etc. aggressively.
But I did what you said: I snooped around online and found enough information to give me a pretty good feeling about my doc-to-be. I had an advantage, tho, because my doc is pretty well known in the Lyme community already, and he doesn't need to be discrete about his practice, being so well known.
The docs who aren't totally 'out' in the medical community may try very hard not to show up on Lyme boards etc., because they don't want to get in hot water. That's why you see us refer here on this site to "Dr A" or "Dr B", to avoid outing the doc if s/he isn't already 'out'.
If the doc is a member of ILADS, that's a good sign, but the docs may not advertise that either.
Lyme can mess with just about every body part ... bladder included. It comes and goes over time, in different body parts. Some people have bad 'Lyme brain' -- meaning foggy thinking and mental fatigue. Others have muscular and joint aches and pains. Sometimes the variant symptoms are because Lyme ticks carry other disease in addition to Lyme, called as a group 'co-infections', and that messes up the symptomatic indicators.
A Lyme doc knows that, and I think a lot of the confusion among nonLyme docs who are confronted with a new patient with a lot of strange symptoms just don't understand how variable Lyme presentations are. So I'd say just be observant of your own symptoms and even keep a brief daily log or calendar of how you feel generally and a short list of the day's symptoms. That kind of data is very helpful to a doc who is trying to figure out what you have (Lyme plus other infections, possibly) and over time how your treatment is progressing.
It's the exact opposite of other diseases, where a specific set of symptoms is common -- Lyme is the other way around: a real grab bag. I personally think that is why nonLLMDs are so lousy at diagnosis and treatment of Lyme and its possible co-infections, because docs are taught to look for a specific set of symptoms to narrow down an illness to a specific infection.
.... but Lyme doesn't play by those rules. And because Lyme can mess with memory and thought process, keeping a short daily log of how you feel and what meds you took and how you slept and anything else that seems out of the ordinary is a good thing to do, and take it with you to your appointments. The first thing my Lyme doc would do was take my log and go review it for a few minutes before coming in to talk with me. He could see patterns that were meaningful medically.
So yes, Lyme can mess with pretty much the whole body in different ways over time, so note it all down! It's like planning an invasion in a war: prepare, prepare, attack!!!
Hi. :) Thank you for all of your messages. I pray you're doing well.
I emailed and received a reply with a list of some doctors. I'm hoping someone will have some time after or before work to help me try to find some information about the doctors.
Earlier I was wondering if Lyme ever caused problems with the bladder because one of the times I went to the emergency room I was told I had a really bad bladder infection that my doctor's office hadn't caught, but I had no symptoms of bladder infection and had no idea I had one. I did a search and it seems lots of people saw a connection.
I emailed and received a reply with a list of some doctors. I'm hoping someone will have some time after or before work to help me try to find some information about the doctors.
Earlier I was wondering if Lyme ever caused problems with the bladder because one of the times I went to the emergency room I was told I had a really bad bladder infection that my doctor's office hadn't caught, but I had no symptoms of bladder infection and had no idea I had one. I did a search and it seems lots of people saw a connection.
I am not a doc or medically trained at all, but I've read enough about Lyme that if I thought I had it, I would *not* take steroids. Neurologists are among the biggest Lyme-deniers out there, so I'm not really surprised that's who is suggesting steroids.
Have you contact ILADS for a referral to an LLMD near you?
Also if you search online for
-- michigan lyme --
you will find lots of leads.
If you are not up to it, ask a friend or family member to help. Hang in there!
Have you contact ILADS for a referral to an LLMD near you?
Also if you search online for
-- michigan lyme --
you will find lots of leads.
If you are not up to it, ask a friend or family member to help. Hang in there!
Hi. :) How are you? I hope that you're feeling good.
Someone contacted me from LLMD's office and said that they were scheduling out into December. I don't think I can wait that long, but they also told me to contact the International Lyme Disease Association and ask them if there is another doctor who could see me sooner than that.
I haven't taken the steroids my neurologist prescribed me, but my family is really pushing me to do so. I'm scared to take them and I'm also scared not to. My visual symptoms are getting worse. The flashing is getting really bad. I'm kind of trapped because I don't know what's wrong and don't know what the right thing to do is.
Someone contacted me from LLMD's office and said that they were scheduling out into December. I don't think I can wait that long, but they also told me to contact the International Lyme Disease Association and ask them if there is another doctor who could see me sooner than that.
I haven't taken the steroids my neurologist prescribed me, but my family is really pushing me to do so. I'm scared to take them and I'm also scared not to. My visual symptoms are getting worse. The flashing is getting really bad. I'm kind of trapped because I don't know what's wrong and don't know what the right thing to do is.
It might take a little longer to get that first appointment, because as I recall, the first appointment with the Lyme doc was a bit long on purpose, so there could be enough time for a complete history and examination and discussion.
Follow up visits were long enough to cover all the territory since the last one, but that first one was a good bit more. And being on the cancellation list is a good idea! Keep us posted -- we're rooting for you.
Follow up visits were long enough to cover all the territory since the last one, but that first one was a good bit more. And being on the cancellation list is a good idea! Keep us posted -- we're rooting for you.
Hi. :) I've asked someone to make some calls for me and they said they would. That's a great idea and thank you for it. Maybe one of the doctors will have a cancellation list I could be put on.
It's got to be scary enough having Lyme disease, but the rest that you all have to put up with when doctors refuse to treat it properly makes it so much scarier. That's another reason why it's so great that you guys are reaching out to people and helping them find their way through it.
It's got to be scary enough having Lyme disease, but the rest that you all have to put up with when doctors refuse to treat it properly makes it so much scarier. That's another reason why it's so great that you guys are reaching out to people and helping them find their way through it.
Yes, it is sad what a mess so-called 'mainstream medicine' has made of Lyme. Someday it will all be sorted out, but not soon enough.
If you are not up to calling the doc's offices, could you ask a family member or close friend to make the calls? "I am calling on behalf of a close friend who has been ill for quite a while and would like a consultation with Dr X. How soon would you be able to see her?" Then your friend could note that doc as 'possible' and keep going down the list. The doc's office would likely want to talk with you directly before booking an appointment. I'm just guessing, tho.
The sooner you call, the sooner you are on the list! And, if you are particularly nearby, you can tell them, "I can usually be at your office within [2 hours'] notice if you have a cancellation." Lyme docs are often verrrry busy people, for all the obvious reasons. But it's worth the hassle.
Hang in there!
If you are not up to calling the doc's offices, could you ask a family member or close friend to make the calls? "I am calling on behalf of a close friend who has been ill for quite a while and would like a consultation with Dr X. How soon would you be able to see her?" Then your friend could note that doc as 'possible' and keep going down the list. The doc's office would likely want to talk with you directly before booking an appointment. I'm just guessing, tho.
The sooner you call, the sooner you are on the list! And, if you are particularly nearby, you can tell them, "I can usually be at your office within [2 hours'] notice if you have a cancellation." Lyme docs are often verrrry busy people, for all the obvious reasons. But it's worth the hassle.
Hang in there!
Hi. Thank you. :) How are you?
I've decided to email since my mouth isn't on my side today. I hope someone will reply. I have a hard time making words come out when I'm really hurting. I've been doing some sniffing around and it looks like the doctor I was kindly given the information for had a wait list of over year, but that was several years ago and I hope it's not that long now. Do people really have to wait that long to get in to see an LLMD? That breaks my heart.
I've decided to email since my mouth isn't on my side today. I hope someone will reply. I have a hard time making words come out when I'm really hurting. I've been doing some sniffing around and it looks like the doctor I was kindly given the information for had a wait list of over year, but that was several years ago and I hope it's not that long now. Do people really have to wait that long to get in to see an LLMD? That breaks my heart.
You say, "I'm also trying to think of what I should say when I call the number. Explain that I'm having symptoms and that no one will test me for Lyme? "
It depends on who you are calling. If you are calling an MD who is known to understand Lyme for what it is, then you could say, "I have been ill for a while and have not gotten a diagnosis, but I am wondering if it is Lyme, and I understand that Dr X is interested in that field of medicine."
Or, you could just call and say, "I have been ill for a while and have not gotten a diagnosis, and would like a consultation with Dr X." If you already have hints that Dr X works in the Lyme field, then you may or may not want to mention Lyme. It's really up to you.
Lyme docs can be very quiet about how much they do or don't treat Lyme, because some local and state medical boards can come down on them if the docs get known for being a 'Lyme doc.' It all depends on the state and local medical boards, and I don't know the status in Michigan. I'm in California, and here, the doc have the right to practice as they see fit, so the Lyme docs don't have to hide -- but in other states, the medical boards have more power and can threaten a doc with revoking their medical license for 'over-treating' Lyme.
There's no right or wrong way, in other words, so you might start with 'I've been ill for X months and can't seem to get a diagnosis and treatment that works. Would Dr X be able to see me for a consultation?'
The receptionist might or might not grill you from there, but in my experience, they don't ask a lot of questions, because that's for the doc to do. If you can, however, figure out from local Lyme organizations and online boards whether a particular doc is Lyme-aware, then that would be a good place to start. Save you time and money and aggravation.
Someday all this sneaking around will be sorted out, but probably not this week.
And PS even if you see a doc who says s/he is a Lyme doc, or gives those indications, you may find that s/he is a bit off the beam and doesn't feel quite up to par. If that happens, find another doc. Local patient boards like this one, except for your state or area, might be helpful, but always keep your antennae up! Sorry not to be more help. Keep us posted.
It depends on who you are calling. If you are calling an MD who is known to understand Lyme for what it is, then you could say, "I have been ill for a while and have not gotten a diagnosis, but I am wondering if it is Lyme, and I understand that Dr X is interested in that field of medicine."
Or, you could just call and say, "I have been ill for a while and have not gotten a diagnosis, and would like a consultation with Dr X." If you already have hints that Dr X works in the Lyme field, then you may or may not want to mention Lyme. It's really up to you.
Lyme docs can be very quiet about how much they do or don't treat Lyme, because some local and state medical boards can come down on them if the docs get known for being a 'Lyme doc.' It all depends on the state and local medical boards, and I don't know the status in Michigan. I'm in California, and here, the doc have the right to practice as they see fit, so the Lyme docs don't have to hide -- but in other states, the medical boards have more power and can threaten a doc with revoking their medical license for 'over-treating' Lyme.
There's no right or wrong way, in other words, so you might start with 'I've been ill for X months and can't seem to get a diagnosis and treatment that works. Would Dr X be able to see me for a consultation?'
The receptionist might or might not grill you from there, but in my experience, they don't ask a lot of questions, because that's for the doc to do. If you can, however, figure out from local Lyme organizations and online boards whether a particular doc is Lyme-aware, then that would be a good place to start. Save you time and money and aggravation.
Someday all this sneaking around will be sorted out, but probably not this week.
And PS even if you see a doc who says s/he is a Lyme doc, or gives those indications, you may find that s/he is a bit off the beam and doesn't feel quite up to par. If that happens, find another doc. Local patient boards like this one, except for your state or area, might be helpful, but always keep your antennae up! Sorry not to be more help. Keep us posted.
I'm also trying to think of what I should say when I call the number. Explain that I'm having symptoms and that no one will test me for Lyme?
Thank you all for everything. I appreciate all of your kindness and what you've written. It really helps. I pray that you are all feeling and doing great.
I haven't been given any antibiotics yet. I haven't found anyone who will even consider testing me for Lyme, but I hope that today I will be able to get ahold of someone from the contact information I was given. :) I'm hoping that even if I don't have Lyme, maybe this doctor will be able to put me in the right direction based on my symptoms.
I haven't been given any antibiotics yet. I haven't found anyone who will even consider testing me for Lyme, but I hope that today I will be able to get ahold of someone from the contact information I was given. :) I'm hoping that even if I don't have Lyme, maybe this doctor will be able to put me in the right direction based on my symptoms.
I had the same feeling several times when I was on IV Invanz a few months ago (it treats both Lyme & Bartonella). I had the the shaking, chills, fever, and definitely trouble focusing or even talking coherently. I would be curled up in a fetal position in bed for an hour or more until it started easing up.
I knew one of these "episodes" was coming on when I started shaking or when I started feeling cold when nobody else was cold, or when my temperature started creeping up. I could get take some Tylenol, get a wet washcloth for my forehead, drink some water, and get to bed before it hit full force. They almost always hit me in the afternoon or evening. I'd get them a couple times a week. They seemed random.
Let me guess... the ER docs didn't know what to do for you.
My LLMD said it was all die-off (herxheimer reaction). The drugs just don't cause these symptoms as side effects. He reduced my dose, and at one point had me take a break (3 weeks off after 3 months of Invanz) so my body could catch up with the detoxing process. Over time, these episodes decreased and then eventually stopped.
An initial bad herx doesn't automatically mean that you can't tolerate that drug. It means that the drug is working to kill bugs, and the patient is feeling the effects of all the toxins of dead bugs being dumped into the blood stream at once. Usually, it gets better with time.
If the bad herxes don't ease up, then perhaps you aren't tolerating that drug well and you need a different one. (I stopped taking Invanz after 3 months because I didn't start feeling better like I should have. I did start feeling better on a couple different meds.)
My doc put me on significant doses of detoxing supplements, including Omega 3 fish oil, quercetin, resveratrol, vitamin C, alpha lipoic acid, glutathione, zinc, and even Allegra (fexofenadine) to help reduce inflammation and support my immune system. These additional things really helped.
Omega 3 fish oil has been shown to reduce brain inflammation. And your immune system desperately needs Vitamin C and zinc to function properly. (I just read that it needs zinc in order to turn off the inflammatory process so that it doesn't go overboard.) At the last appointment, the doctor's P.A. added chlorella to my regimen as well. It's also an excellent detoxer. (It's good to find a clean chlorella. The cheap stuff from a certain large Asian country has been found to have contaminants in it.)
Just think of these supplements as the clean up crew that come in to mop up after a battle between the antibiotics and the bugs so that the war can continue.
I encourage you not to give up. Definitely talk to your doctor about the idea of easing up on your dose until you get past the big die-offs. (Note: If your doctor doesn't understand the true nature of a late stage Lyme infection and herxheimer reactions, then he might believe you're just having a bad drug reaction and want to switch you. Sometimes even the LLMDs have trouble differentiating between side effects and die-off. Amoxicillin, the 2nd choice drug for early Lyme is less effective than Doxy, but killing the bugs a bit slower might be a good thing.)
I'm not a doctor and I'm not diagnosing you. I'm just sharing from my own experience. Please don't stop any meds without calling your doctor first.
Have you found an LLMD yet? Sometimes it can take weeks or months to get in, so I encourage you to do that as soon as possible. Or ask a family member to take on this task for you. Don't hesitate to ask for help, or to tell your family to expect less of you for a while.
Hang in there!
I knew one of these "episodes" was coming on when I started shaking or when I started feeling cold when nobody else was cold, or when my temperature started creeping up. I could get take some Tylenol, get a wet washcloth for my forehead, drink some water, and get to bed before it hit full force. They almost always hit me in the afternoon or evening. I'd get them a couple times a week. They seemed random.
Let me guess... the ER docs didn't know what to do for you.
My LLMD said it was all die-off (herxheimer reaction). The drugs just don't cause these symptoms as side effects. He reduced my dose, and at one point had me take a break (3 weeks off after 3 months of Invanz) so my body could catch up with the detoxing process. Over time, these episodes decreased and then eventually stopped.
An initial bad herx doesn't automatically mean that you can't tolerate that drug. It means that the drug is working to kill bugs, and the patient is feeling the effects of all the toxins of dead bugs being dumped into the blood stream at once. Usually, it gets better with time.
If the bad herxes don't ease up, then perhaps you aren't tolerating that drug well and you need a different one. (I stopped taking Invanz after 3 months because I didn't start feeling better like I should have. I did start feeling better on a couple different meds.)
My doc put me on significant doses of detoxing supplements, including Omega 3 fish oil, quercetin, resveratrol, vitamin C, alpha lipoic acid, glutathione, zinc, and even Allegra (fexofenadine) to help reduce inflammation and support my immune system. These additional things really helped.
Omega 3 fish oil has been shown to reduce brain inflammation. And your immune system desperately needs Vitamin C and zinc to function properly. (I just read that it needs zinc in order to turn off the inflammatory process so that it doesn't go overboard.) At the last appointment, the doctor's P.A. added chlorella to my regimen as well. It's also an excellent detoxer. (It's good to find a clean chlorella. The cheap stuff from a certain large Asian country has been found to have contaminants in it.)
Just think of these supplements as the clean up crew that come in to mop up after a battle between the antibiotics and the bugs so that the war can continue.
I encourage you not to give up. Definitely talk to your doctor about the idea of easing up on your dose until you get past the big die-offs. (Note: If your doctor doesn't understand the true nature of a late stage Lyme infection and herxheimer reactions, then he might believe you're just having a bad drug reaction and want to switch you. Sometimes even the LLMDs have trouble differentiating between side effects and die-off. Amoxicillin, the 2nd choice drug for early Lyme is less effective than Doxy, but killing the bugs a bit slower might be a good thing.)
I'm not a doctor and I'm not diagnosing you. I'm just sharing from my own experience. Please don't stop any meds without calling your doctor first.
Have you found an LLMD yet? Sometimes it can take weeks or months to get in, so I encourage you to do that as soon as possible. Or ask a family member to take on this task for you. Don't hesitate to ask for help, or to tell your family to expect less of you for a while.
Hang in there!
Just sent you a private message through this system, with local Michigan Lyme group phone numbers, if other contacts don't come through.
Keep us posted -- we're thinking of you.
Keep us posted -- we're thinking of you.
Keep trying the contact info that I gave you. The LLMD comes very highly recommended by a very reliable source. Good luck!
Thank you for everything you guys have been sharing with me. It means a lot. I was taken to the ER yesterday. My arms and legs kept shaking and I felt the strangest and scariest feeling I've ever felt in my head. If I have Lyme or something else, I really need to find someone who can tell me. I haven't heard back from the association and so I think I will have to call the number that was given to me.
Oh, and on the rash question... I did not have a bulls eye rash. (I did have a solid rash with no center clearing.) Very early studies of Lyme described that only 25% of patients recalled a bulls eye rash. More recent studies have shown that another quarter got a different kind of rash, and half saw no rash. (Of course any rash on the back of your head or other non-visible place could go unnoticed.)
Somewhere along the line, oversimplified descriptions of Lyme given to health care providers said to look for a bulls eye rash, swollen joints (esp. the knees), headaches, and possibly fatigue, followed eventually by Lyme arthritis. Since rheumatologists were doing the initial research, it took them a long time to look beyond the rheumatic symptoms to realize that there could also be neurological symptoms. (They still dismiss many symptoms related to specific organs, such as the thyroid, GI tract, gallbladder, liver, et.al. despite scientific proof that Lyme can infect multiple organs. And despite some fairly prestigious doctors expressing concern about how well Lyme can mimic MS, the so-called "experts" about Lyme still insist this almost never happens. Hah! Then why are there so many of us on the on-line forums looking for help!?)
Because the rash is definitive for Lyme, it was heavily promoted to doctors as an indicator of the disease. That was accurate, although incomplete, as it failed to remind doctors not to depend on the appearance of the rash for diagnosis.
Then the rash became part of the surveillance (sampling) criteria set by the CDC. They had different criteria in different states depending on whether they believed Lyme was endemic in that state. This further distorted the numbers and resulted in the reported cases skewing heavily towards appearance of the rash (as high as 80%).
An erythema migrans rash should always be treated immediately, and early infection (first month) antibody tests are often false negative. Antibiotics can suppress natural antibody production, meaning someone with an early infection who is treated promptly might never test "positive."
I've heard multiple stories of people who had the Lyme rash and their doctor prescribed Doxy but also ran blood tests. When the tests came back negative, they told the patients to stop the Doxycycline because they don't actually have Lyme. Aaggghh! WRONG! The rash ALWAYS means Lyme. But Lyme DOES NOT ALWAYS have a bulls eye rash.
I've heard multiple stories of people who got a tick bite and a solid rash or hives at the bite and were refused treatment because there was no center clearing in the rash. Attempts to oversimplify this complex disease has resulted in widespread misunderstandings.
Some doctors think that they can't diagnose it without a rash. Or that even if there is a rash, they needed a positive lab test or symptoms like fever first. All of this is wrong, but in reading the CDC information for myself, I can see how it can be easily misunderstood. The CDC prefers to have someone go undiagnosed and become disabled rather than giving 3 weeks of antibiotics to someone who doesn't actually have a Lyme infection. I personally would prefer the latter so that my health isn't wrecked.
Infectious Disease doctors who call themselves experts on Lyme have said, "Lyme is hard to get and easy to cure." and made statements such as, Lyme is usually a mild and self limiting disease easily cured with antibiotics.
Well, in real life, neither of these statements is accurate, and too many people have been devastated by this crippling disease because doctors don't take it seriously, or work under the various myths about Lyme, such as "There's no Lyme in this state!"
Somewhere along the line, oversimplified descriptions of Lyme given to health care providers said to look for a bulls eye rash, swollen joints (esp. the knees), headaches, and possibly fatigue, followed eventually by Lyme arthritis. Since rheumatologists were doing the initial research, it took them a long time to look beyond the rheumatic symptoms to realize that there could also be neurological symptoms. (They still dismiss many symptoms related to specific organs, such as the thyroid, GI tract, gallbladder, liver, et.al. despite scientific proof that Lyme can infect multiple organs. And despite some fairly prestigious doctors expressing concern about how well Lyme can mimic MS, the so-called "experts" about Lyme still insist this almost never happens. Hah! Then why are there so many of us on the on-line forums looking for help!?)
Because the rash is definitive for Lyme, it was heavily promoted to doctors as an indicator of the disease. That was accurate, although incomplete, as it failed to remind doctors not to depend on the appearance of the rash for diagnosis.
Then the rash became part of the surveillance (sampling) criteria set by the CDC. They had different criteria in different states depending on whether they believed Lyme was endemic in that state. This further distorted the numbers and resulted in the reported cases skewing heavily towards appearance of the rash (as high as 80%).
An erythema migrans rash should always be treated immediately, and early infection (first month) antibody tests are often false negative. Antibiotics can suppress natural antibody production, meaning someone with an early infection who is treated promptly might never test "positive."
I've heard multiple stories of people who had the Lyme rash and their doctor prescribed Doxy but also ran blood tests. When the tests came back negative, they told the patients to stop the Doxycycline because they don't actually have Lyme. Aaggghh! WRONG! The rash ALWAYS means Lyme. But Lyme DOES NOT ALWAYS have a bulls eye rash.
I've heard multiple stories of people who got a tick bite and a solid rash or hives at the bite and were refused treatment because there was no center clearing in the rash. Attempts to oversimplify this complex disease has resulted in widespread misunderstandings.
Some doctors think that they can't diagnose it without a rash. Or that even if there is a rash, they needed a positive lab test or symptoms like fever first. All of this is wrong, but in reading the CDC information for myself, I can see how it can be easily misunderstood. The CDC prefers to have someone go undiagnosed and become disabled rather than giving 3 weeks of antibiotics to someone who doesn't actually have a Lyme infection. I personally would prefer the latter so that my health isn't wrecked.
Infectious Disease doctors who call themselves experts on Lyme have said, "Lyme is hard to get and easy to cure." and made statements such as, Lyme is usually a mild and self limiting disease easily cured with antibiotics.
Well, in real life, neither of these statements is accurate, and too many people have been devastated by this crippling disease because doctors don't take it seriously, or work under the various myths about Lyme, such as "There's no Lyme in this state!"
Here's the comment I started for you a couple days ago, and finally had time to finish.
I'm a bit late to the conversation, and I see you've gotten some good info and good advice already. I'll jump in anyway. ;)
I am appalled that two doctors refused to test you for Lyme Disease because 'there's no Lyme in Michigan." Wisconsin and Michigan have had thousands of cases. Pennsylvania has more Lyme cases than any other state, and it's only 2 states away. Do these doctors think that deer, birds, and ticks somehow don't cross state lines??
Also the CDC officially stated last year that actual cases of Lyme are more like 10 times the reported cases. So if 165 cases were reported in Michigan last year, you can be sure the real number is at least 1650, and probably much higher due to all the undiagnosed cases thanks to ignorant doctors.
Sorry to be blunt, but refusing to test you is inexplicable to me. I would not go back to that family physician. It sounds like he pretends that his patients aren't really sick to cover up his own poor diagnostic skills.
Perhaps your local Lyme Disease support group could suggest a doctor (possibly even one who takes your insurance) who is willing to test for and diagnose Lyme. If the neuro won't test you for Lyme, then you certainly won't get diagnosed or treated by him, either. The good part about going to the neuro is getting a good work up and eliminating other possibilities.
I saw 2 neuros and got a full MS work up. It was helpful when I got to the LLMD. Diagnosis was easy once we got my Western Blot back and it showed Lyme specific antibodies.
The scary thing is that we've heard of people who've been misdiagnosed with MS by neuros and given immune suppressants that made them sicker. If you really had MS, then steroids would have made you feel better, not worse.
NOTE: I'm not a doctor, so I am not telling you what you do or do not have. I'm just trying to raise your awareness to the multitude of stories out there of Lyme patients devastated by misdiagnoses thanks to misinformation and disinformation put out to doctors over the last 20 years.
I highly recommend calling a local Lyme support group to find a doctor who truly understands Lyme and will actually believe you rather than blaming "stress" for your confounding symptoms.
P.S. A flu shot also made me noticeably sicker. If I'd gone to the LLMD when I first suspected Lyme rather than waiting, then the LLMD could have told me not to get the flu shot. (My regular neuro thought it was fine and okayed the vaccine.)
Flu shots have mercury and aluminum in them. People with neurological symptoms usually have inflammation that opens up the blood-brain barrier allowing the mercury and aluminum in the shot to go straight into your brain. Some research has shown that Lyme bacteria like to collect mercury and use it in their biofilms. I've heard of other undiagnosed Lyme patients who also got sick or sicker after a flu shot.
I'm a bit late to the conversation, and I see you've gotten some good info and good advice already. I'll jump in anyway. ;)
I am appalled that two doctors refused to test you for Lyme Disease because 'there's no Lyme in Michigan." Wisconsin and Michigan have had thousands of cases. Pennsylvania has more Lyme cases than any other state, and it's only 2 states away. Do these doctors think that deer, birds, and ticks somehow don't cross state lines??
Also the CDC officially stated last year that actual cases of Lyme are more like 10 times the reported cases. So if 165 cases were reported in Michigan last year, you can be sure the real number is at least 1650, and probably much higher due to all the undiagnosed cases thanks to ignorant doctors.
Sorry to be blunt, but refusing to test you is inexplicable to me. I would not go back to that family physician. It sounds like he pretends that his patients aren't really sick to cover up his own poor diagnostic skills.
Perhaps your local Lyme Disease support group could suggest a doctor (possibly even one who takes your insurance) who is willing to test for and diagnose Lyme. If the neuro won't test you for Lyme, then you certainly won't get diagnosed or treated by him, either. The good part about going to the neuro is getting a good work up and eliminating other possibilities.
I saw 2 neuros and got a full MS work up. It was helpful when I got to the LLMD. Diagnosis was easy once we got my Western Blot back and it showed Lyme specific antibodies.
The scary thing is that we've heard of people who've been misdiagnosed with MS by neuros and given immune suppressants that made them sicker. If you really had MS, then steroids would have made you feel better, not worse.
NOTE: I'm not a doctor, so I am not telling you what you do or do not have. I'm just trying to raise your awareness to the multitude of stories out there of Lyme patients devastated by misdiagnoses thanks to misinformation and disinformation put out to doctors over the last 20 years.
I highly recommend calling a local Lyme support group to find a doctor who truly understands Lyme and will actually believe you rather than blaming "stress" for your confounding symptoms.
P.S. A flu shot also made me noticeably sicker. If I'd gone to the LLMD when I first suspected Lyme rather than waiting, then the LLMD could have told me not to get the flu shot. (My regular neuro thought it was fine and okayed the vaccine.)
Flu shots have mercury and aluminum in them. People with neurological symptoms usually have inflammation that opens up the blood-brain barrier allowing the mercury and aluminum in the shot to go straight into your brain. Some research has shown that Lyme bacteria like to collect mercury and use it in their biofilms. I've heard of other undiagnosed Lyme patients who also got sick or sicker after a flu shot.
I have to tell you that I was given steroids when doctors couldn't figure out what was wrong with me. Lyme mimics several auto immune disorders, but steroids are a disaster for Lyme patients. I don't mean to scare you, but I definitely got sicker after prednisone.
I was given a shot of it for the supposed asthma that was believed to cause my difficulties in breathing. Four days later I ended up in the ER with worse breathing, almost total hoarseness, disorientation, and some anxiety. They gave me 4 days worth of prednisone and told me to go see a pulmonologist.
I steadily went downhill after that and eventually ended up severely ill and hospitalized. Here's the scary part. If you do indeed have late stage Lyme, the steroids may temporarily reduce some of the runaway inflammation in your body. But steroids make a Lyme infection worse, which will result in worsening symptoms and even more inflammation and greater difficulty in treating it.
If steroids made you sick before, I think that's a huge red flag. I had blurry vision, floaters, flashing lights, and significant light sensitivity. It has all resolved with treatment (although the blurry spot took the longest...turned out that specific spot was caused by Bartonella. The other visual problems went away with Lyme treatment.)
I can't encourage you enough to get to a LLMD. Doctors who don't understand Lyme or are in denial of Lyme and its coinfections can easily make a patient worse.
I was given a shot of it for the supposed asthma that was believed to cause my difficulties in breathing. Four days later I ended up in the ER with worse breathing, almost total hoarseness, disorientation, and some anxiety. They gave me 4 days worth of prednisone and told me to go see a pulmonologist.
I steadily went downhill after that and eventually ended up severely ill and hospitalized. Here's the scary part. If you do indeed have late stage Lyme, the steroids may temporarily reduce some of the runaway inflammation in your body. But steroids make a Lyme infection worse, which will result in worsening symptoms and even more inflammation and greater difficulty in treating it.
If steroids made you sick before, I think that's a huge red flag. I had blurry vision, floaters, flashing lights, and significant light sensitivity. It has all resolved with treatment (although the blurry spot took the longest...turned out that specific spot was caused by Bartonella. The other visual problems went away with Lyme treatment.)
I can't encourage you enough to get to a LLMD. Doctors who don't understand Lyme or are in denial of Lyme and its coinfections can easily make a patient worse.
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