son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!
- Thread starter hensue
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Hi Hensue, i would get him in with Klimas if possible and then tell her about the tick bite etc and see what she advises, otherwise start a seperate thread looking for good lyme doc.
I think the important thing is for him to have some testing to rule in or out physical disease as opposed to anxiety disorder.
Hope this makes sense -take care, Justy.x
I think the important thing is for him to have some testing to rule in or out physical disease as opposed to anxiety disorder.
Hope this makes sense -take care, Justy.x
Esther12
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Personally, I'd advise against 'Lyme literate' doctors. Lyme disease can cause complicated and long-term problems... but there's a lot of quackery around it. Unless you have really good reason to think that Lyme disease is likely to be significant you you/your son, I'd stay away. There are lots of dodgy tests claiming almost everyone has Lyme disease, and that if you pay a lot of money, they'll treat you for it.
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FYI sue: PLease be aware that everybody here does not have everyone else's best interest in mind. It takes a bit of reading/watching to figure out who is trying to give good/helpful advice.
Apparently there is a new test for lyme. If he had a tick bite, that is something to consider.
http://forums.phoenixrising.me/showthread.php?14236-New-Lyme-disease-culture-test-now-available!
Your main issue is going to be finding a decent doctor that can help, but doesn't charge a fortune. If it is more than $700 for the first visit(not including tests) move on....hopefully he has some insurance and can get the testing paid for somewhat by insurance. It might take trying one or more docs to find one that you think can help.
Apparently there is a new test for lyme. If he had a tick bite, that is something to consider.
http://forums.phoenixrising.me/showthread.php?14236-New-Lyme-disease-culture-test-now-available!
Your main issue is going to be finding a decent doctor that can help, but doesn't charge a fortune. If it is more than $700 for the first visit(not including tests) move on....hopefully he has some insurance and can get the testing paid for somewhat by insurance. It might take trying one or more docs to find one that you think can help.
I have really screwed up now! Dr Klimas office says no new patients until late winter or early spring. He had an appt. and found out all that was wrong with his back and we all thought that was the problem and I cancelled. I really wish I had kept it now.
Any suggestions????
Susie
Any suggestions????
Susie
Hi Susie, im so sorry to hear this -what a mess! Please dont panic, all is not lost. Why don't you make a new appointment with Klimas for next year and in the meantime you could take a look at the link to the mitochondrial profile function test that i sent you that is now available internationally. It would give you some idea of wether your son has M.E/CFS and also give a personalised list of things to try if problems show up with reccomendations of what else to look at. Its just an idea but it could be a good stop gap and you would know then wether he needs to slow down and rest in order to reduce the anxiety or wether to try more conventional anxiety approaches.
Take care, Justy.x
Take care, Justy.x
That is a thought! What does everyone think about Dr Black or Dr Lapp??? I can get him in right away but everything is cash. It is not but two and half hours where he lives.
needs some info
did see where Cort had remarked whether good or bad. Dr Lapp does a lot of drug trials??
needs some info
did see where Cort had remarked whether good or bad. Dr Lapp does a lot of drug trials??
heapsreal
iherb 10% discount code OPA989,
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Hensue, look into getting all the usual viral culprits like ebv, cmv, hhv6 tested, just treating them can make a big difference to how he feels. Im sure you could find a doctor to test for these.
cheers!!!
cheers!!!
Sushi
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You could make an appointment and then get on the waiting list for cancellations. That sometimes works.
Best wishes,
Sushi
August59
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I spent 10 days and $30,000 at Mayo in Rochester, MN and got nothing except 90 pages of reports and at the time was told they did not diagnose CFS as a disease. This was in 2006 and maybe they have changed. They danced all around it, but would not put CFS down as diagnosis.
August59
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how far are you from Charlotte, NC? If not to far you could try Hunter Hopkins Center w/Dr. Lapp or Dr. Black
Just want to say well said justy!
hensue, if your son has ME/CFS, there is much he could be doing, such as the things justy mentions. That is a nice summary of my own situation, really, I could have written that post as well.
The truth is that with ME/CFS, the harder you push, the worse you will become. So the desperation to quickly find a treatment can be a mistake, based on traditional medical 'just take a pill' reasoning.
Regarding finding a doctor, a good 'integrated medicine' or 'functional medicine' doctor will usually listen to reason and consider ME/CFS a serious disease. And most importantly they will treat the gut and stress and provide some medications that are needed. I would not make the assumption that you absolutely need an ME/CFS specialist until you have tried doing everything possible you can first. Diet, stress reduction, methylation support, some natural treatments for the gut (he complains about gas, that can be simple dysbiosis that can be treated without a specialist).
Even if you do end up wanting to go to a specialist, there is no rush. Pick the doc you want to see and get on their list. The world will not end and ME/CFS will not likely go away while you wait. And meanwhile your son can learn to better manage his condition. Anyway...what do you think an ME/CFS specialist will do? They do not have any magic, they will tell your son to start pacing, manage his energy envelope, keep well hydrated, follow a good diet for the food intolerances we often have, things like that. Some might prescribe an antiviral or antibiotic or one of the more exotic treatments if that is indicated, but those might not be necessary. ME/CFS takes time to treat, sometimes years to figure out what will help a given patient. So self-help and working on general wellness can be very smart things to focus on, along with safe, integrated natural medical approaches, while you work on finding a good doc, etc.
taniaaust1
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I was concerned how you could take Kurt post.. If i didnt understand where Kurts thoughts were coming from that would of been an very upsetting post to read as it could be seen as trivialising things by some
What Kurts post is trying to get you to understand that if your son does have ME/CFS ..specialist or not, this is going to be a long and hard process for him and lots about this issue is having to go with the flow.
A specialist cant like quickly fix him but may just help him a bit. If he has got ME/CFS this will mean he will probably have to change so many different things and his life wont just go back to what it was but it will go on.
Im going to suggest something which "may" help you both know more if he has some psychological issue or ME . There is a test neurologists sometimes do which you can try with him.. if he is positive it will show he's issue isnt just psychological and help point towards ME as this is one of the many different tests many ME patients may find are positive. (note.. not all ME patients thou are positive either so a non positive test dont mean he hasnt got ME/CFS).
Try the following test with him (make sure you are there to grab him if he's going to fall during it and that he dont have anything about him which he could hurt himself on). http://en.wikipedia.org/wiki/Romberg's_test
.....
If he has ME, many things specialists try with ME patients can be actually done at home. As the others have said, he can while awaiting to get in with a specialist.. start trialing certain things eg chemical avoidence to see if they could be triggering off the panic attacks, B vitamins esp active forms are a common thing which can help a little many of us, make sure food intollerances arent triggering off panic attacks.. he may think about trialing a food elimination diet etc etc etc.
There is so many different things one can be be trialing which are non harmful things while awaiting to get in with a specialist and get a diagnoses.
best luck
as you and your son probably feel like his world is in fact being destroyed and is ending as he becomes less and less able
What Kurts post is trying to get you to understand that if your son does have ME/CFS ..specialist or not, this is going to be a long and hard process for him and lots about this issue is having to go with the flow.
A specialist cant like quickly fix him but may just help him a bit. If he has got ME/CFS this will mean he will probably have to change so many different things and his life wont just go back to what it was but it will go on.
Im going to suggest something which "may" help you both know more if he has some psychological issue or ME . There is a test neurologists sometimes do which you can try with him.. if he is positive it will show he's issue isnt just psychological and help point towards ME as this is one of the many different tests many ME patients may find are positive. (note.. not all ME patients thou are positive either so a non positive test dont mean he hasnt got ME/CFS).
Try the following test with him (make sure you are there to grab him if he's going to fall during it and that he dont have anything about him which he could hurt himself on). http://en.wikipedia.org/wiki/Romberg's_test
.....
If he has ME, many things specialists try with ME patients can be actually done at home. As the others have said, he can while awaiting to get in with a specialist.. start trialing certain things eg chemical avoidence to see if they could be triggering off the panic attacks, B vitamins esp active forms are a common thing which can help a little many of us, make sure food intollerances arent triggering off panic attacks.. he may think about trialing a food elimination diet etc etc etc.
There is so many different things one can be be trialing which are non harmful things while awaiting to get in with a specialist and get a diagnoses.
best luck
taniaaust1
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I just thought of another ME sign which can show but I dont know if it only usually just shows in the long term MErs (maybe it dont show up till later in ME? thou)... but with ME many of us loose our finger moons (that white part at the base of our nails).
Its quite normal for someone to be missing a couple and some people do miss more but those with ME can loose most of their finger moons (i have only the ones in my thumbs left. I didnt know about any of this till I read something in which a ME specialist mentions it)..
If i can think of any other things which can actually show in those with ME but probably wont be there in just a psych patient.. I'll post it.
....
If he has it, alcohol intollerance is also a good sign that someone probably has ME and not just an anxiety issue. Those with only anxiety or psychological issues may do things like increase alcohol intake while those who have ME often end up getting sick when they have it.
Alcohol intollerence is so common in ME that that almost made it into the diagnostic criteria for the ME/CFS canadian consensus document i think it was.
Its quite normal for someone to be missing a couple and some people do miss more but those with ME can loose most of their finger moons (i have only the ones in my thumbs left. I didnt know about any of this till I read something in which a ME specialist mentions it)..
If i can think of any other things which can actually show in those with ME but probably wont be there in just a psych patient.. I'll post it.
....
If he has it, alcohol intollerance is also a good sign that someone probably has ME and not just an anxiety issue. Those with only anxiety or psychological issues may do things like increase alcohol intake while those who have ME often end up getting sick when they have it.
Alcohol intollerence is so common in ME that that almost made it into the diagnostic criteria for the ME/CFS canadian consensus document i think it was.
The moons on my thumbs are only left now. I appreciate all the help from everyone. It is like are we missing something God forbid? That could make him feel like this? I am just assuming it is cfs but I would have a hard time convincing him of this. Kurt you did not offend me but it is his state of mind which I understand.
Is I dont want to feel like this the rest of my life!! This can be very distressing to a mother. You are right the specialist will still be there. I thought maybe the quicker he was diagnosed maybe it would not be sooooo bad??
Is I dont want to feel like this the rest of my life!! This can be very distressing to a mother. You are right the specialist will still be there. I thought maybe the quicker he was diagnosed maybe it would not be sooooo bad??
thanks tania, you made a good 'catch' on my post, I was in a hurry when I wrote that and on re-read it could be misunderstood, your clarification was correct and appreciated!
hensue, ME/CFS takes time to diagnose, even in the best situation. Actually, as hard as this might sound, if your son has ME/CFS he is probably better off than some of the other possible diagnosis, as there IS chance of significant recovery in the early years and we know a lot more now about how to treat ME/CFS now. I do know people who have worked on their health and experienced significant remission within the first five years or so.
Also, I relate to your situation as I both have ME/CFS and have a child, who is also an adult, who also has ME/CFS, plus FM. She had to drop out of college due to getting this illness and has lived with us ever since. This was very hard for me to accept the first few years, she was very bad off at first, did not have the energy to leave the house for about two years at one point, she actually never even went out the front door or even sat on the porch. I remember the day she finally went outside. We have continued to work, every single day, on this illness, for years, and have made significant progress. My daughter went shopping today for about two hours, with her mother, standing up and walking around, etc. She can drive again, reasonable distances. Still sick and disabled, and she still has to monitor her energy envelop carefully and take supplements, including active B vitamins as tania pointed out. But she is more functional and life is better for her.
I hope you and your son find a way to make peace with your situation, there is a LOT you both can do, and there are doctors and also natural medicine experts who probably can help.
One medical thought occurred to me, since you mention your son has liver area pain, the liver holds the largest reserve of glutathione in the body. So logically, if he is having Phase I/II detox problems and glutathione is being depleted, and/or methylation is getting blocked, the liver might be very distressed. Also, the liver is a primary target for the autoimmune condition that might be involved in ME/CFS (anti-cardiolipin/anti-mitochondria), per a study in Hawaii. Of course there may be many different problems with the liver, this particular methylation/detox problem just happens to be one that appears common in ME/CFS. Fortunately that is a system that can be helped with supplements (methylation is involved in the level of glutathoine in the liver). That is just one example of how digging in and learning might lead to some help, while we wait for better answers (collectively speaking).
Regarding whether your son has ME/CFS, PEM is a pretty strong indicator for this illness.
hensue, ME/CFS takes time to diagnose, even in the best situation. Actually, as hard as this might sound, if your son has ME/CFS he is probably better off than some of the other possible diagnosis, as there IS chance of significant recovery in the early years and we know a lot more now about how to treat ME/CFS now. I do know people who have worked on their health and experienced significant remission within the first five years or so.
Also, I relate to your situation as I both have ME/CFS and have a child, who is also an adult, who also has ME/CFS, plus FM. She had to drop out of college due to getting this illness and has lived with us ever since. This was very hard for me to accept the first few years, she was very bad off at first, did not have the energy to leave the house for about two years at one point, she actually never even went out the front door or even sat on the porch. I remember the day she finally went outside. We have continued to work, every single day, on this illness, for years, and have made significant progress. My daughter went shopping today for about two hours, with her mother, standing up and walking around, etc. She can drive again, reasonable distances. Still sick and disabled, and she still has to monitor her energy envelop carefully and take supplements, including active B vitamins as tania pointed out. But she is more functional and life is better for her.
I hope you and your son find a way to make peace with your situation, there is a LOT you both can do, and there are doctors and also natural medicine experts who probably can help.
One medical thought occurred to me, since you mention your son has liver area pain, the liver holds the largest reserve of glutathione in the body. So logically, if he is having Phase I/II detox problems and glutathione is being depleted, and/or methylation is getting blocked, the liver might be very distressed. Also, the liver is a primary target for the autoimmune condition that might be involved in ME/CFS (anti-cardiolipin/anti-mitochondria), per a study in Hawaii. Of course there may be many different problems with the liver, this particular methylation/detox problem just happens to be one that appears common in ME/CFS. Fortunately that is a system that can be helped with supplements (methylation is involved in the level of glutathoine in the liver). That is just one example of how digging in and learning might lead to some help, while we wait for better answers (collectively speaking).
Regarding whether your son has ME/CFS, PEM is a pretty strong indicator for this illness.
Thanks Kurt
I understood no bad feelings. In fact where would I be without all of you? I am very sorry for your daughter suffers from this dreaded crap. My problem, he calls at 9:45 wife gone to store. He has been home all day all 4 kids gone to school. Cannot function I am non existent, cannot live like this any more. He is not saying he would take his life but crying to me that he is so sick feeling he cannot get up. We are relying on wife's insurance so he cannot come home. BcBs of NC. I am just getting no where with his docs. I guess i will take him to see Dr Black or Lapp Seem to know quite a bit about it. I have not heard but one person or maybe 2 that has gone there.
When I get sick If I go overboard and do things physically I should not within about 24 hours I am flu symptoms aching all over but also pain from fibro and cannot move for the fatigue. He seems to have this kind of fatigue but not pain all the time. I guess that is what I am not understanding?? Fibro and chronic fatigue apparently not exactly alike. Seems like him just getting through the day is impossible. I know that sick and fatigue when I have the PEM. Mine eventually goes away if I rest his is not. Can you overdo so bad you just cannot get up??
Can i ask do anyone of you here take Wellbutrin Sr? I take it twice a day 150 Sr, now if I did not have it fatigue wise I could not make it. I never had panic attacks feeling like I was going to die. My pain was so bad I just wished sometimes I could. I know now how to deal a lot better and not working.
He is with a wife married 4 kids and not doing dishes vacuming picking up kids and this could be stressful for all. I am trying to find and internist in NC that understands CFS and will take insurance. Just so we can rule out the other things.
I called his internist and they think it is in his head. I cannot find an internist in the triangle of Charlotte or Raleigh, chapel Hill that knows about chronic fatigue.
I want to rule things out first. A lot of things have been ruled out. He has panic attacks, severe disc slipped in lumbar region and etc. He got off the neurotin because he could do nothing but sleep. Now taking Ambien yuk. He is begging and crying tonight to please take him somewhere he doesnt want to lose his wife and child. He wants to function.
I think I will just call and see if he wants to go to Lapp or Black has anyone on the board been? At least maybe that would be the diagnosis. Like you said I would like to go to internist and get blood work run etc.
Whatever right now taking meds to go sleep and I am rambling and prob making not knowing what I am saying. He does not have the energy or strength to help himself right now. We are paying day care for his daughter because he cannot keep her a 3 year old. I am reading again about the liver what you wrote.
What about the LDN approach Dr Klimas puts people on does it help?? CFS
I guess I was extremely lucky I would not believe the docs years ago when they told me I had fibro. After I went to neurologist and other docs and finally to Emory Clinic in Atlanta Ga. I did not tell them what the other docs had said and they only went by symptoms. All I heard is you have the classic symptoms and bam neurologist at Emory put me on Wellbutrin Sr and klonopin and many supplements over the years. Multi vitamins magnesium malic acid. etc.
I went into a depression for about a year knowing my life would never be the same but I had lived !! Your child has not and my son has not and I am sure many people on this board have not lived yet. That really suks so I find myself fortunate. This day and age they dont just send you through a clinic like Emory anymore I guess.
take care
rambled
Susie
I understood no bad feelings. In fact where would I be without all of you? I am very sorry for your daughter suffers from this dreaded crap. My problem, he calls at 9:45 wife gone to store. He has been home all day all 4 kids gone to school. Cannot function I am non existent, cannot live like this any more. He is not saying he would take his life but crying to me that he is so sick feeling he cannot get up. We are relying on wife's insurance so he cannot come home. BcBs of NC. I am just getting no where with his docs. I guess i will take him to see Dr Black or Lapp Seem to know quite a bit about it. I have not heard but one person or maybe 2 that has gone there.
When I get sick If I go overboard and do things physically I should not within about 24 hours I am flu symptoms aching all over but also pain from fibro and cannot move for the fatigue. He seems to have this kind of fatigue but not pain all the time. I guess that is what I am not understanding?? Fibro and chronic fatigue apparently not exactly alike. Seems like him just getting through the day is impossible. I know that sick and fatigue when I have the PEM. Mine eventually goes away if I rest his is not. Can you overdo so bad you just cannot get up??
Can i ask do anyone of you here take Wellbutrin Sr? I take it twice a day 150 Sr, now if I did not have it fatigue wise I could not make it. I never had panic attacks feeling like I was going to die. My pain was so bad I just wished sometimes I could. I know now how to deal a lot better and not working.
He is with a wife married 4 kids and not doing dishes vacuming picking up kids and this could be stressful for all. I am trying to find and internist in NC that understands CFS and will take insurance. Just so we can rule out the other things.
I called his internist and they think it is in his head. I cannot find an internist in the triangle of Charlotte or Raleigh, chapel Hill that knows about chronic fatigue.
I want to rule things out first. A lot of things have been ruled out. He has panic attacks, severe disc slipped in lumbar region and etc. He got off the neurotin because he could do nothing but sleep. Now taking Ambien yuk. He is begging and crying tonight to please take him somewhere he doesnt want to lose his wife and child. He wants to function.
I think I will just call and see if he wants to go to Lapp or Black has anyone on the board been? At least maybe that would be the diagnosis. Like you said I would like to go to internist and get blood work run etc.
Whatever right now taking meds to go sleep and I am rambling and prob making not knowing what I am saying. He does not have the energy or strength to help himself right now. We are paying day care for his daughter because he cannot keep her a 3 year old. I am reading again about the liver what you wrote.
What about the LDN approach Dr Klimas puts people on does it help?? CFS
I guess I was extremely lucky I would not believe the docs years ago when they told me I had fibro. After I went to neurologist and other docs and finally to Emory Clinic in Atlanta Ga. I did not tell them what the other docs had said and they only went by symptoms. All I heard is you have the classic symptoms and bam neurologist at Emory put me on Wellbutrin Sr and klonopin and many supplements over the years. Multi vitamins magnesium malic acid. etc.
I went into a depression for about a year knowing my life would never be the same but I had lived !! Your child has not and my son has not and I am sure many people on this board have not lived yet. That really suks so I find myself fortunate. This day and age they dont just send you through a clinic like Emory anymore I guess.
take care
rambled
Susie