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What should I ask the ID doctor tomorrow?
I know from reading your posts, you do not think much of ID doctors. I started going to him before I found out I have RMSF. He did blood work for everything, I thought. All he told me was I had two IGG subclasses that were low and had me to do 3 IVIG injections. I was scheduled to go back for more blood work to check my levels. I have to go to his office tomorrow for the results. While I'm there I'm going to show him the results from my test that my GP did that found the RMSF. I expect him to be negative about the report. I don't know what I should ask him. I really don't understand why he didn't find this.
I hear you. This doc sounds like he has possibilities, so keep your fingers crossed and see what he comes back with.
Part of the problem docs have in dealing with Lyme is that it is a crazy quilt of symptoms in each person, due to differences in immune system function and in which infections the ticks brought. So hang on! And keep us posted.
If this one doesn't work out, we'll go to Plan B. There's always a Plan B. :)
Sending you all good thoughts -- J
Part of the problem docs have in dealing with Lyme is that it is a crazy quilt of symptoms in each person, due to differences in immune system function and in which infections the ticks brought. So hang on! And keep us posted.
If this one doesn't work out, we'll go to Plan B. There's always a Plan B. :)
Sending you all good thoughts -- J
I googled it several days ago. When I saw my ID doctor on there, I knew it didn't mean anything. I still haven't received anything from the email I sent. I had blood work this morning and again this afternoon. I hope this isn't a dead end. I have felt so awful all day. When I have to do things like this, it wipes me out. I really hate to keep complaining, but I guess if I felt good, I wouldn't be on here. I will see what this doctor tells me after he sees my blood work and the procedures next week ,because at this time, I do not know where else to go. You told me that LLMDs are a state of mind a understanding. This doctor did want to hear everything I had to say. He also wanted to get my records and more bw and test and said he was going to study it. He talked to us about he had been talking with other doctors about this problems. Also, the fact that he has sent patients to New York, he understands that there is a long term problem from this. He does understand that a person will still be sick after a round of doxy. He said he has tried long term antibiotics, but he hasn't seen success.
My husband wants to find out what he has to say when we go back. Then we will decide if we should go again. Thanks again for all your help.
My husband wants to find out what he has to say when we go back. Then we will decide if we should go again. Thanks again for all your help.
I just searched on google (tho any browser should do) for
-- alabama lyme --
and for
-- georgia lyme --
and both of those searches immediately popped up with Lyme organizations in those states. ILADS being a national organization, it doesn't so much have its boots on the ground at that state level, but a state organization will.
Docs may join a local or state Lyme organization and be easier to find and also know how to bob and weave around the local politics and know who the good local labs are and and any specialty docs who understand Lyme and so on. For example, I was surprised when I found out that of all the MD specialists, ophthalmologists (MDs who specialize in eyes, not just make glasses) are extremely aware of Lyme and take it very seriously. Who knew!
But as said before, many docs don't want the added attention of being called a Lyme doc/LLMD, because the other docs (the ones who don't understand Lyme) can get really huffy and cause problems for LLMDs for 'over-diagnosing' and 'over-prescribing' -- because the LLMDs know a couple weeks of doxy ain't usually gonna cut it if you've been sick for a while, and also won't work against some of the co-infections.
So those local Lyme groups can be very useful. Take a look! Those groups often have a Facebook page too, if you do Facebook.
You go!
-- alabama lyme --
and for
-- georgia lyme --
and both of those searches immediately popped up with Lyme organizations in those states. ILADS being a national organization, it doesn't so much have its boots on the ground at that state level, but a state organization will.
Docs may join a local or state Lyme organization and be easier to find and also know how to bob and weave around the local politics and know who the good local labs are and and any specialty docs who understand Lyme and so on. For example, I was surprised when I found out that of all the MD specialists, ophthalmologists (MDs who specialize in eyes, not just make glasses) are extremely aware of Lyme and take it very seriously. Who knew!
But as said before, many docs don't want the added attention of being called a Lyme doc/LLMD, because the other docs (the ones who don't understand Lyme) can get really huffy and cause problems for LLMDs for 'over-diagnosing' and 'over-prescribing' -- because the LLMDs know a couple weeks of doxy ain't usually gonna cut it if you've been sick for a while, and also won't work against some of the co-infections.
So those local Lyme groups can be very useful. Take a look! Those groups often have a Facebook page too, if you do Facebook.
You go!
Thanks. You are probably right. Maybe if I get enough test and blood work, someone can look at all of it and help me. Like I said, I had the strange pressure headache, mostly in afternoons, a few months before the bite. If he could figure this out, I would feel so much better. Those are the worse thing I am going thru. I will look in my spam.
You are always so kind and encouraging. You have a way of calming people. This is the most frustrating experience of my life. I have just completed going thru 4 different doctors and 4 different surgeries with my back. I thought that was hard. I didn't know this world existed until a couple of weeks ago. My doctor,that diagnosed RMSF, said 2 rounds of doxy. I thought it was going to be rough and then I would get better. Then I start learning the medical world is not ready for this problem. Most of them don't understand it, and the few that do, have to basically go in hiding. You can't even get a straight answer from most about a doctor and treatment. I have a lady on a lyme group, that my friend with lyme got me on, talking about her sister getting treated. She lived in Alabama too. When I ask her who her doctor was and her treatment, her answer was her sister had always be so private about all of that. She would not have even posted on there if her sister knew it. I know what you told me about why they have to do this, but believe me this is a shock to me. She could just use the messenger. I saw a lady on here from Georgia that said she was in remission. Maybe if I send a message to her, she can tell me where she went. Sorry for all the venting, it's been a bad day, and I was hopeful.
Try ILADS again. They may just be swamped this time of year -- summer's coming to an end, so there's a pile of new cases of Lyme to be dealt with. It's not a huge organization, so try again.
You're doing fine -- Lyme has lots of ways it's a pain in the backside to deal with, and this is one of them.
Docs *all* believe they are doing the right thing -- even if they aren't. Medicine is constantly changing, since Mother Nature keeps a few steps ahead all the time. Remember, it took me 20 docs to get a diagnosis, and it was worth getting there.
Yes, it IS scary -- and remember that at least some of that feeling is because Lyme messes with your hormones and emotions, so that you may feel fragile and confused and upset simply due to the infection. All that will go away after treatment.
Try taking magnesium -- it will help with mood. If you don't want to take supplements, then be sure to drink milk or eat foods with lots of magnesium.
This doc you saw is not uncommon, in my experience and from what I read from others. That's mainstream medicine at work. Someday it will all be sorted out, but for now, that's just the way it is.
The hardest part of understanding this split in the medical community is that we are brought up to believe that All Docs Are Equally Wise. Not true, and really, it makes no sense to believe that they could be. Mother Nature keeps the docs on their toes, and not all docs are up to the challenge.
Given the split in the medical community about Lyme, the doc you saw was actually somewhat openminded -- tho he's maybe only half way to being an LLMD. Remember there's no test to be an LLMD ... it's a state of mind and understanding. And docs who are NOT LLMD's don't know they aren't. It's like a kid who thinks she sings really well but is tone deaf -- that's what this doc sounds like. He means well, but missed the boat.
So you tried a doc that had possibilities, but it turned out he wasn't quite at the level hoped for. That's okay. (Remember my 20 docs it took to get a diagnosis!) You're way ahead of where I was, so know that you're doing good.
Figure out the next doc to see, and get an appointment. You're doing fine -- you're posting here and fretting over the doc not working out -- that's a good sign! If you were curled up in the corner feeling sorry for yourself, now THAT would be a problem. Repeat: you're doing fine.
So figure out what doc you are going to see next, and get an appointment. You can do it -- and I know that because you already *are* doing it. It's not your fault the doc was clueless, tho well-meaning.
Hang on! Let us know how we can help.
You're doing fine -- Lyme has lots of ways it's a pain in the backside to deal with, and this is one of them.
Docs *all* believe they are doing the right thing -- even if they aren't. Medicine is constantly changing, since Mother Nature keeps a few steps ahead all the time. Remember, it took me 20 docs to get a diagnosis, and it was worth getting there.
Yes, it IS scary -- and remember that at least some of that feeling is because Lyme messes with your hormones and emotions, so that you may feel fragile and confused and upset simply due to the infection. All that will go away after treatment.
Try taking magnesium -- it will help with mood. If you don't want to take supplements, then be sure to drink milk or eat foods with lots of magnesium.
This doc you saw is not uncommon, in my experience and from what I read from others. That's mainstream medicine at work. Someday it will all be sorted out, but for now, that's just the way it is.
The hardest part of understanding this split in the medical community is that we are brought up to believe that All Docs Are Equally Wise. Not true, and really, it makes no sense to believe that they could be. Mother Nature keeps the docs on their toes, and not all docs are up to the challenge.
Given the split in the medical community about Lyme, the doc you saw was actually somewhat openminded -- tho he's maybe only half way to being an LLMD. Remember there's no test to be an LLMD ... it's a state of mind and understanding. And docs who are NOT LLMD's don't know they aren't. It's like a kid who thinks she sings really well but is tone deaf -- that's what this doc sounds like. He means well, but missed the boat.
So you tried a doc that had possibilities, but it turned out he wasn't quite at the level hoped for. That's okay. (Remember my 20 docs it took to get a diagnosis!) You're way ahead of where I was, so know that you're doing good.
Figure out the next doc to see, and get an appointment. You're doing fine -- you're posting here and fretting over the doc not working out -- that's a good sign! If you were curled up in the corner feeling sorry for yourself, now THAT would be a problem. Repeat: you're doing fine.
So figure out what doc you are going to see next, and get an appointment. You can do it -- and I know that because you already *are* doing it. It's not your fault the doc was clueless, tho well-meaning.
Hang on! Let us know how we can help.
So sorry todays doctor wasn't more encouraging about treatment. It probably won't hurt to have him run these tests. Get copies of everything so you can take them to a LLMD/ND. What city and state are you in? You can post on various lyme forums with a header saying " Looking for LLMD/ND in......."
Have you checked your spam folder for an ILADS response? That's where I found mine. Just keep plugging away and you'll find the right treatment!
Have you checked your spam folder for an ILADS response? That's where I found mine. Just keep plugging away and you'll find the right treatment!
I did use it. I have not received anything back. This doctor was used by a family friend when he had RMSF. The different is, he was treated early. I'm sorry, but I don't know who to see at this time. I'm doing the best I can. It is all a scary new world to me. What I have learned it not good. It is the hardest thing to find help and get the right treatment.
Sorry, I am confused. Is this "new doctor" a LLMD? I am going to assume by his comments that he is not. I'm pretty sure that others on here will agree that you need to see a LLMD. Jackie gave you the ILADS source, so you will need to use that to find a LLMD or a LLND. They will help you get tested through Igenex and do a clinical diagnosis. It costs money but well worth it!
All the best!
All the best!
I went to my new doctor today. I'm afraid he's not what I need. He told me there really wasn't anything to give me this far out for RMSF. He also said, he didn't think I had the disease, because I would have died. He thinks I got some of the bugs and they have probably caused the chronic fatigue, fibro, head issues etc. He said that is what happens when it isn't treated, it causes other problems within your body. This is one thing that bothers me, he doesn't think that antibiotics will help me at this point. He said he had families that insisted that they be given, and the patient had a very bad reaction to all the antibiotics, but didn't get well. I know from reading your post, and others, that you were given antibiotics to get well. He has ordered blood work to check my B12, CPK, Folic Acid, Magnesium, Parathyroid Hormone, CMV titers, Mono titers, Lyme disease titers, cortisol levels at am & pm , CT head scan, Echo cardiogram. Also, he is getting my records from the ID doctor. He really took a lot of time with me, as his office backed up. He said he wanted to look at everything and see if he could come up with something that would help. I am glad he is doing the CT scan of my head, because I started having these pressure headaches about 8 months before I saw the bite. It was after I started having panic attacks. Another thing that bothered me, he didn't know what I was talking about when I said something to him about testing thru igenex. I have learned that this is the one so many of you have used to learn exactly what you have. I'm afraid I won't know for sure if I have lyme or other co-infections, if it's never used. He told me that he, and other doctors, have seen hundreds of patients like me. There wasn't anything they could do for us. He said there were a lot of studies going on in this area, and there was a couple of clinics in New York that a couple of his patients had gone. They were using experimental drugs, but couldn't say they had gotten better. II have cried a lot today. I don't know if I even need to go thru all these procedures and blood work, if he doesn't intend to treat me with antibiotics. My husband went with me, and he has told me to give him a chance. He said he really seems to want to help you. I just don't know if he knows how.
This is great news! Good for you for plowing ahead -- when it comes to you versus Lyme, my money is on you!
What you did by being persistent and figuring out the way to get to a doc who understands is the main trick in dealing with Lyme -- and *you did it*.
Keep us posted -- we will be waiting to hear. Hurrah!!!
What you did by being persistent and figuring out the way to get to a doc who understands is the main trick in dealing with Lyme -- and *you did it*.
Keep us posted -- we will be waiting to hear. Hurrah!!!
I wanted to give you an update. I have an appointment with a new doctor on Tuesday. I was told he was not seeing new patients, but I talked to the lady and told her my condition. She took my name and phone number and said she would get back to me. I was pleased when she called me back in a few minutes and told me he would see me. I was told by a former patient that the doctor's brother had RMSF and had to fly to New York for treatment. I believe he tries to help others because of this. I have some hope now. After the visit with the ID doctor and talking with my friend that told me I would have to fly across the country, I really felt hopeless. That is an awful place to be. You have been great at trying to give me hope. What you do is so important for people like me. I will post to let you know if this doctor can help. I know he helped my son's friend that also had RMSF.
IGeneX seems to be the preferred lab for Lyme testing. My doc used it too.
I don't know why you would need to 'fly across the country.' There are docs who understand Lyme in many places.
To my understanding, doxy does not do the job on Lyme that has been in place for an extended period of time. Many of us do not know when we were bitten and never saw a tick or a rash, so knowing how long we have been infected is just a guessing game. Rather than looking back to an unknowable date, getting appropriate testing and diagnosis on your current condition would be the way to go, if I were in your situation.
Your GP sounds like a nice guy, but if he does not understand Lyme, then you may not get full answers. As mentioned before, it is my understanding from several sources that doxy, doxy and more doxy will not end an established Lyme infection. Many docs do not know or believe that, and keep giving doxy. Your doc may be one of those. Your choice is to educate your doc, or find another doc.
I do not personally know or know of any LLMDs in Alabama or Georgia. I live in California. I am sorry that you are having such a hard time, and it would be good if you find a friend or relative who can help you with these tasks. Lyme is a difficult disease, its co-infections make it more complex, and the medical community is in disarray, so it is indeed a very hard thing to deal with, but there is no magic wand for this. So I would
1 -- enlist a friend to help find a local LLMD
2 -- get tested by the LLMD
3 -- get treated
4 -- be well again
I remember how sick I was too, so I feel badly for you, but this is just a website that gives ideas of ways to deal with possible Lyme and other related infections. Please find a friend or relative nearby who can help you -- it's worth the effort.
Again, the ILADS referral source is -- contact [at] ILADS [dot] org. I can't type it exactly as you need to put it into your search box, because this computer program will block it out. Take out all the spaces and replace [at] with @ and replace [dot] with . I will send you a private message through this system with the correct email address.
Best wishes! and don't give up.
Keep us posted -- best wishes to you --
I don't know why you would need to 'fly across the country.' There are docs who understand Lyme in many places.
To my understanding, doxy does not do the job on Lyme that has been in place for an extended period of time. Many of us do not know when we were bitten and never saw a tick or a rash, so knowing how long we have been infected is just a guessing game. Rather than looking back to an unknowable date, getting appropriate testing and diagnosis on your current condition would be the way to go, if I were in your situation.
Your GP sounds like a nice guy, but if he does not understand Lyme, then you may not get full answers. As mentioned before, it is my understanding from several sources that doxy, doxy and more doxy will not end an established Lyme infection. Many docs do not know or believe that, and keep giving doxy. Your doc may be one of those. Your choice is to educate your doc, or find another doc.
I do not personally know or know of any LLMDs in Alabama or Georgia. I live in California. I am sorry that you are having such a hard time, and it would be good if you find a friend or relative who can help you with these tasks. Lyme is a difficult disease, its co-infections make it more complex, and the medical community is in disarray, so it is indeed a very hard thing to deal with, but there is no magic wand for this. So I would
1 -- enlist a friend to help find a local LLMD
2 -- get tested by the LLMD
3 -- get treated
4 -- be well again
I remember how sick I was too, so I feel badly for you, but this is just a website that gives ideas of ways to deal with possible Lyme and other related infections. Please find a friend or relative nearby who can help you -- it's worth the effort.
Again, the ILADS referral source is -- contact [at] ILADS [dot] org. I can't type it exactly as you need to put it into your search box, because this computer program will block it out. Take out all the spaces and replace [at] with @ and replace [dot] with . I will send you a private message through this system with the correct email address.
Best wishes! and don't give up.
Keep us posted -- best wishes to you --
I tried magnesium and I felt like my head was going to explode and it gave me diarrhea. ( which would probably be a good change for me now) It seems that ever supplement I have tried does this to me. What kind of magnesium are you talking about? I was told by a lady that after having four back surgeries I had depleted my magnesium. I got me some, and I was on the couch with the awful headache and then the diarrhea. I would like to try something that would work for me.
My doctor did blood work for lyme and RMSF at the same time. The lyme came back negative. My friend said I need to be tested thru igenex. She said she is sure I probably have it too and maybe other coinfections. She thinks LabCorp, that my doctor used , it not good enough. I am not well after taking 21 days of doxy, but I am no where near as sick as she has been. My doctor is a regular GP, but he is trying to help me. He is going to do more blood on the 21st. I believe if my levels are still not good, he will give me more doxy. Shouldn't I just wait and see if he can help me instead of flying across the country.
I don't know why but, I have been unable to get thru at the email you gave me for the ILADS. Can you just message me and tell me the drs in my area AL/ GA?
My doctor did blood work for lyme and RMSF at the same time. The lyme came back negative. My friend said I need to be tested thru igenex. She said she is sure I probably have it too and maybe other coinfections. She thinks LabCorp, that my doctor used , it not good enough. I am not well after taking 21 days of doxy, but I am no where near as sick as she has been. My doctor is a regular GP, but he is trying to help me. He is going to do more blood on the 21st. I believe if my levels are still not good, he will give me more doxy. Shouldn't I just wait and see if he can help me instead of flying across the country.
I don't know why but, I have been unable to get thru at the email you gave me for the ILADS. Can you just message me and tell me the drs in my area AL/ GA?
Others can chime in here, but I don't know why you would 'probably' have Lyme just because you had RMSF. Sure, it can happen, but there are lots of us posting here who have various co-infections (the 'bonus' diseases the 'Lyme' ticks often carry), but there is no pattern among us that I can see after several years of reading this site and various literature about Lyme.
Your friend sounds like she has had a really hard time, but that doesn't mean that you will too. I mentioned above how much help magnesium has been to me and to others I know. Mood can really swing down when there's not enough magnesium in your system. Try some of that and see if it helps -- it kicks in pretty fast, like under a week.
You ARE strong enough to handle this -- you found your way here! And there are lots of Lyme docs ... and surely there are a few between Alabama and DC. So buck up! The first and hardest part for me was getting the diagnosis: after that, it's plowing ahead with treatment.
You can do it.
Your friend sounds like she has had a really hard time, but that doesn't mean that you will too. I mentioned above how much help magnesium has been to me and to others I know. Mood can really swing down when there's not enough magnesium in your system. Try some of that and see if it helps -- it kicks in pretty fast, like under a week.
You ARE strong enough to handle this -- you found your way here! And there are lots of Lyme docs ... and surely there are a few between Alabama and DC. So buck up! The first and hardest part for me was getting the diagnosis: after that, it's plowing ahead with treatment.
You can do it.
I was talking with a friend of mine that about died with lyme. She is the one that told me to be tested. She said that if I have RMSF I probably have lyme. I hope not, she has been thru hell. She has to go by plane to Washington DC from Alabama to see her doctor. She said her doctor doesn't take anymore patients. She told me there is so few doctors and most of them does not take insurance anymore. She really scared me with everything she told me. I don't know if I am strong enough to handle all this.
It's not wasted time -- sometimes you have to go all the way to the end of an alley to be sure it really is a dead end. Then you go back and try another street.
The doc might be right about the RMSF -- I think it's not as tricky as Lyme -- but he doesn't seem to have any other specific ideas. He's trying, but he sounds to me like he's flailing.
So in your shoes, my next step would be to find a Lyme doc.
If you email to
-- contact [at] ILADS [dot] org--
and tell them what area you are in ("near St Louis MO"), they can send you names of docs in your area who do understand Lyme.
ILADS stands for International Lyme and Associated Diseases Society, a voluntary group that all kinds of docs belong to, but what they have in common is that they all have an interest in Lyme disease and tend to think more up-to-date thoughts about Lyme than other docs (like the one you just saw seems to be).
Your profile here doesn't say what state or area you are in, but if you tell us, maybe someone here has a good lead for that area.
--> Part of Lyme is that it messes with your hormone and endocrine system, which affects mood in a very big way. It is not unusual (and even common) to feel tired and in the dumps when you have a Lyme infection. So don't beat yourself up -- !
You are doing fine, just by looking for a doc and coming here to get ideas -- that shows you are strong and determined, and that is what it takes. Once you are diagnosed and get treated with whatever it is, things will be better. Moneyback guarantee.
Side note: do you take vitamins etc.? Lyme bacteria like to use up magnesium (Mg) in your body, and Mg has a big effect on mood and thinking process. You might try some Mg supplements, any variety ending in "-ate", such as magnesium malate, orotate, aspartate, citrate, etc. The American diet is apparently short on Mg anyway, and when Lyme comes to party, well ...
There is a kind of supplement that combines mangesium and calcium (one brand is called CalMag) and I have read in several places that it's just not that easily absorbed by the body, so I'd go for a supplement that is just magnesium, as mentioned above. I still take Mg supplements now, even tho I'm well past Lyme treatment. It really does help, even without Lyme slurping it up.
So email ILADS (see above) and get the names of some Lyme docs near you. It's no guarantee they will be a good fit for you, but they're likely better than Dr Clueless you just saw. (Okay, that was mean, but ... I meant it.)
Let us know how we can help -- and you hang in there!
The doc might be right about the RMSF -- I think it's not as tricky as Lyme -- but he doesn't seem to have any other specific ideas. He's trying, but he sounds to me like he's flailing.
So in your shoes, my next step would be to find a Lyme doc.
If you email to
-- contact [at] ILADS [dot] org--
and tell them what area you are in ("near St Louis MO"), they can send you names of docs in your area who do understand Lyme.
ILADS stands for International Lyme and Associated Diseases Society, a voluntary group that all kinds of docs belong to, but what they have in common is that they all have an interest in Lyme disease and tend to think more up-to-date thoughts about Lyme than other docs (like the one you just saw seems to be).
Your profile here doesn't say what state or area you are in, but if you tell us, maybe someone here has a good lead for that area.
--> Part of Lyme is that it messes with your hormone and endocrine system, which affects mood in a very big way. It is not unusual (and even common) to feel tired and in the dumps when you have a Lyme infection. So don't beat yourself up -- !
You are doing fine, just by looking for a doc and coming here to get ideas -- that shows you are strong and determined, and that is what it takes. Once you are diagnosed and get treated with whatever it is, things will be better. Moneyback guarantee.
Side note: do you take vitamins etc.? Lyme bacteria like to use up magnesium (Mg) in your body, and Mg has a big effect on mood and thinking process. You might try some Mg supplements, any variety ending in "-ate", such as magnesium malate, orotate, aspartate, citrate, etc. The American diet is apparently short on Mg anyway, and when Lyme comes to party, well ...
There is a kind of supplement that combines mangesium and calcium (one brand is called CalMag) and I have read in several places that it's just not that easily absorbed by the body, so I'd go for a supplement that is just magnesium, as mentioned above. I still take Mg supplements now, even tho I'm well past Lyme treatment. It really does help, even without Lyme slurping it up.
So email ILADS (see above) and get the names of some Lyme docs near you. It's no guarantee they will be a good fit for you, but they're likely better than Dr Clueless you just saw. (Okay, that was mean, but ... I meant it.)
Let us know how we can help -- and you hang in there!
Oh my, I feel like I wasted 2 hrs in the ID doctor's office. I would have been more upset if I had not been prepared by you what to expect from him. He did as expected and told me I had no infections causing me to be sick. He said that as for the RMS, 2 weeks of doxy was enough to kill what was in my system. He didn't know why I was still sick and fatigue. He said I should go back to my GP. I needed to get a scan from head to toe. Maybe see a ENT doctor or neuro. He told me two or three times it was not the RMSF causing me to feel this way. He said it is gone. I don't know where I will go next, but I hope I can find someone soon that will give me something that will help.
PS -- I didn't answer your question directly:
What should you ask the doc? Take a friend or family member with you to be your helper and take notes of the discussion, if it gets complicated.
I'd ask the doc
(1) what he thinks is wrong,
(2) why he thinks that,
(3) what other possibilities there are,
(4) what specific treatment(s) he suggests, and
(5) how soon treatment would begin.
If you are not satisfied, say thank you and take copies of all the test results and go to a different doc for a second opinion.
I'm NOT medically trained, so this is just from my own experience. You are carrying a heavy load, and get someone close to you to help. Take care, and keep us posted. Best to you --
What should you ask the doc? Take a friend or family member with you to be your helper and take notes of the discussion, if it gets complicated.
I'd ask the doc
(1) what he thinks is wrong,
(2) why he thinks that,
(3) what other possibilities there are,
(4) what specific treatment(s) he suggests, and
(5) how soon treatment would begin.
If you are not satisfied, say thank you and take copies of all the test results and go to a different doc for a second opinion.
I'm NOT medically trained, so this is just from my own experience. You are carrying a heavy load, and get someone close to you to help. Take care, and keep us posted. Best to you --
You say to me, "I know from reading your posts, you do not think much of ID doctors."
There are some good ones, but the problem is that the group-think among ID docs, as sincere as I am sure it is, is missing part of the data. Docs are scientists, and they learn early to rely on what other docs/scientists have discovered and determined in earlier work. That's a good approach ... except when somebody drops a stitch in the knitting. Scientists are supposed to be rigorous in their work and not let ego get in the way, but they are indeed only human.
I've posted this before, but it still applies: when AIDS first arrived on the scene about 25 years ago, the docs were totally confused about what it was and where it came from and how it was transmitted, let alone how to treat it. They went with the data they had at that point, which was that the only people with AIDS were either (1) gay or (2) Haitian. The Centers for Disease Control head doc went on live TV and stated flatly that if you weren't Haitian or gay, you couldn't get AIDS. That is just absurd on its face, but docs make mistakes, and he was trying to keep people from panicking. (For me, it had the opposite effect: it told me the doc had no idea what to do next, and he was just tap-dancing.)
Lyme is currently one of those areas where the docs are tripping over themselves making mistakes. It takes a lot of courage and confidence to be an MD: people's lives and well-being depend on it, so docs tend to go with what everyone else in the medical community is saying. That often works, but sometimes, as with AIDS and now with Lyme, that absolute certainty gets in the way of the docs thinking clearly.
I don't think badly of ID docs ... I just want docs to be a little more humble about the possibility that they could be wrong, but being doubtful tends to scare patients and rattle the docs themselves, so the docs act all-knowing, and sometimes they forget that they ARE human and prone to errors.
(Watch what's going on in the news now: the whole Ebola virus story has docs tripping over themselves. Docs are human, but one does wish they could be slightly more thoughtful about it all.)
You say, "I'm going to show him the results from my test that my GP did that found the RMSF. I expect him to be negative about the report. I don't know what I should ask him. I really don't understand why he didn't find this."
He missed it because he's human, and he made a mistake. He might not be humble about it, because docs need the patient to still feel confident about the doc's skills, and it also takes nerve for a doc to get out of bed in the morning and start messing with people's well-being and their very lives.
Your doc might not understand the mistake he has made, but that's also because he's human. He might have gotten arrogant like some docs do, but it just means you have to look out for yourself and find another doc for a second opinion of what to do, if the current doc doesn't snap to.
I speak from experience, in a slightly different circumstance. Some years back, I wasn't feeling well -- discomfort in the gut -- and went to a doc who specializes in that part of the body: a gastroenterologist. The doc told me it was nothing but indigestion and would go away.
Instead it got worse.
A few day later, I went to a hospital emergency room and told the doc there honestly about the first doc's comments, so we would be on the same page. The second doc told me he thought I had appendicitis, and he called in the first doc out of professional courtesy, but they both told me to go home. The second doc was deferring to the first doc, who was more senior.
Like a good soldier, I went home, still hurting. And it got even worse -- much MUCH worse -- so I went to yet a different ER (it was in an area with a lot of hospitals!), and I refused to leave till they called in a new doc, who realized that not only did I have appendicitis, but my appendix had already burst, and I would have died soon.
Surgery was done that night, and it was a long road to getting well, but here I am. The lesson I learned was that docs are only human, and sometimes they are arrogant and stupid -- including thinking all women are whiners.
These docs didn't mean to neglect me nearly to death, but they did. So take control of your situation, and if you are too weak to do so, then get a wise and experienced family member or friend to sort it all out and give you options to choose. As ill as you are, you may not be in good enough shape to think through all this, but you probably can make the decisions when they are formulated and presented to you.
Be your own advocate, and rely on friends and family to advocate for you. It's not wimpy to do so -- people think of me as being outspoken and stubborn (ya think?), but I needed people to help me through as well. Can you think of a family member or friend who can do that for you?
And high on my list would be getting another opinion from a new doc. Take your test results to date and see the new doc. Even go to the ER if you are that bad off. Be aggressive, and rely on your friends and family. YOU GO!
You say, "While I'm there I'm going to show him the results from my test that my GP did that found the RMSF. I expect him to be negative about the report. I don't know what I should ask him. I really don't understand why he didn't find this."
He missed it. He made a mistake. He's human.
So take charge.
Recruit a friend or family member to take charge for you, and to present options to you for decision. When you are as ill as you sound, it's nearly impossible to be on top of all this, so get your gang together and look to them for help and guidance. No one here knows you well enough to do all that, and it needs to be local and up front. I am sure you have someone who can do that for you.
Take care, and let us know how we can help and how you are doing, okay? Hang on!
There are some good ones, but the problem is that the group-think among ID docs, as sincere as I am sure it is, is missing part of the data. Docs are scientists, and they learn early to rely on what other docs/scientists have discovered and determined in earlier work. That's a good approach ... except when somebody drops a stitch in the knitting. Scientists are supposed to be rigorous in their work and not let ego get in the way, but they are indeed only human.
I've posted this before, but it still applies: when AIDS first arrived on the scene about 25 years ago, the docs were totally confused about what it was and where it came from and how it was transmitted, let alone how to treat it. They went with the data they had at that point, which was that the only people with AIDS were either (1) gay or (2) Haitian. The Centers for Disease Control head doc went on live TV and stated flatly that if you weren't Haitian or gay, you couldn't get AIDS. That is just absurd on its face, but docs make mistakes, and he was trying to keep people from panicking. (For me, it had the opposite effect: it told me the doc had no idea what to do next, and he was just tap-dancing.)
Lyme is currently one of those areas where the docs are tripping over themselves making mistakes. It takes a lot of courage and confidence to be an MD: people's lives and well-being depend on it, so docs tend to go with what everyone else in the medical community is saying. That often works, but sometimes, as with AIDS and now with Lyme, that absolute certainty gets in the way of the docs thinking clearly.
I don't think badly of ID docs ... I just want docs to be a little more humble about the possibility that they could be wrong, but being doubtful tends to scare patients and rattle the docs themselves, so the docs act all-knowing, and sometimes they forget that they ARE human and prone to errors.
(Watch what's going on in the news now: the whole Ebola virus story has docs tripping over themselves. Docs are human, but one does wish they could be slightly more thoughtful about it all.)
You say, "I'm going to show him the results from my test that my GP did that found the RMSF. I expect him to be negative about the report. I don't know what I should ask him. I really don't understand why he didn't find this."
He missed it because he's human, and he made a mistake. He might not be humble about it, because docs need the patient to still feel confident about the doc's skills, and it also takes nerve for a doc to get out of bed in the morning and start messing with people's well-being and their very lives.
Your doc might not understand the mistake he has made, but that's also because he's human. He might have gotten arrogant like some docs do, but it just means you have to look out for yourself and find another doc for a second opinion of what to do, if the current doc doesn't snap to.
I speak from experience, in a slightly different circumstance. Some years back, I wasn't feeling well -- discomfort in the gut -- and went to a doc who specializes in that part of the body: a gastroenterologist. The doc told me it was nothing but indigestion and would go away.
Instead it got worse.
A few day later, I went to a hospital emergency room and told the doc there honestly about the first doc's comments, so we would be on the same page. The second doc told me he thought I had appendicitis, and he called in the first doc out of professional courtesy, but they both told me to go home. The second doc was deferring to the first doc, who was more senior.
Like a good soldier, I went home, still hurting. And it got even worse -- much MUCH worse -- so I went to yet a different ER (it was in an area with a lot of hospitals!), and I refused to leave till they called in a new doc, who realized that not only did I have appendicitis, but my appendix had already burst, and I would have died soon.
Surgery was done that night, and it was a long road to getting well, but here I am. The lesson I learned was that docs are only human, and sometimes they are arrogant and stupid -- including thinking all women are whiners.
These docs didn't mean to neglect me nearly to death, but they did. So take control of your situation, and if you are too weak to do so, then get a wise and experienced family member or friend to sort it all out and give you options to choose. As ill as you are, you may not be in good enough shape to think through all this, but you probably can make the decisions when they are formulated and presented to you.
Be your own advocate, and rely on friends and family to advocate for you. It's not wimpy to do so -- people think of me as being outspoken and stubborn (ya think?), but I needed people to help me through as well. Can you think of a family member or friend who can do that for you?
And high on my list would be getting another opinion from a new doc. Take your test results to date and see the new doc. Even go to the ER if you are that bad off. Be aggressive, and rely on your friends and family. YOU GO!
You say, "While I'm there I'm going to show him the results from my test that my GP did that found the RMSF. I expect him to be negative about the report. I don't know what I should ask him. I really don't understand why he didn't find this."
He missed it. He made a mistake. He's human.
So take charge.
Recruit a friend or family member to take charge for you, and to present options to you for decision. When you are as ill as you sound, it's nearly impossible to be on top of all this, so get your gang together and look to them for help and guidance. No one here knows you well enough to do all that, and it needs to be local and up front. I am sure you have someone who can do that for you.
Take care, and let us know how we can help and how you are doing, okay? Hang on!
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