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New...Help?
I have been ill for the past 12 yrs. Last week I was talking to a friend who had just been diagnosed with Late Stage Lyme disease. I knew he was ill with something, but he never could get a clear diagnosis.
When he began listing all his symptoms my reaction was more that surprise because I have been experiencing ALL of what he described plus a few more symptoms.
I have been to specialist after specialist after specialist. None of them had ever even talked about lyme disease. So I have learned to just 'live with it.'
After talking to him, I began to do some research. All the research I have found (symptomatic) is dead on for late stage.
I called my doctor this morning just to make sure about being tested for the disease ( i can't name all the tests that have been done on me!) And never had a test for Lyme. When I talked to my Dr, he stated he had never heard of Late Stage Lyme.. so here I am this afternoon look for more information and medical articles on the disease and I find this site.!!
I believe that Lyme Disease is what has been making me sick for all these years. I have everything! Joint and muscle pain, unexplained fevers, migraines, on some occasions weird rashes, clumsiness (and I bruise easily), been diagnosed with depression - anxiety/panic disorder - ptsd - suicide, swelling of joints, bone pain, major fatigue but also insomnia because of the pain, numbness in feet and hands (this was the first symptom that led to get a checkup), increase in allergic reactions to antibiotics and allergy meds. What really bothers me is that I have had recent problems with numbers... adding/subtracting/switching numbers.. etc...I had to close my checking account because I kept switching numbers and ran myself into debt.
I have scoured this site and read almost all posts about this. Talked to my doctor again, but he is still skeptical that this can even happen.
I have had several tick bites since I was a little girl, Grew up in the outdoors, love the outdoors. Every year I find ticks either on me or in my house.
I am very frustrated and don't know how to convince my DR to do the tests that need to be to at least rule out Lyme disease.
I am tired of being sick and non-functional. It may not be Lyme disease, but everything I have read...it fits. It never occurred to me either that it may be Lyme disease, and I should know more about this disease than I do, considering where I live.
Any help on talking to my DR would be extremely helpful.
When he began listing all his symptoms my reaction was more that surprise because I have been experiencing ALL of what he described plus a few more symptoms.
I have been to specialist after specialist after specialist. None of them had ever even talked about lyme disease. So I have learned to just 'live with it.'
After talking to him, I began to do some research. All the research I have found (symptomatic) is dead on for late stage.
I called my doctor this morning just to make sure about being tested for the disease ( i can't name all the tests that have been done on me!) And never had a test for Lyme. When I talked to my Dr, he stated he had never heard of Late Stage Lyme.. so here I am this afternoon look for more information and medical articles on the disease and I find this site.!!
I believe that Lyme Disease is what has been making me sick for all these years. I have everything! Joint and muscle pain, unexplained fevers, migraines, on some occasions weird rashes, clumsiness (and I bruise easily), been diagnosed with depression - anxiety/panic disorder - ptsd - suicide, swelling of joints, bone pain, major fatigue but also insomnia because of the pain, numbness in feet and hands (this was the first symptom that led to get a checkup), increase in allergic reactions to antibiotics and allergy meds. What really bothers me is that I have had recent problems with numbers... adding/subtracting/switching numbers.. etc...I had to close my checking account because I kept switching numbers and ran myself into debt.
I have scoured this site and read almost all posts about this. Talked to my doctor again, but he is still skeptical that this can even happen.
I have had several tick bites since I was a little girl, Grew up in the outdoors, love the outdoors. Every year I find ticks either on me or in my house.
I am very frustrated and don't know how to convince my DR to do the tests that need to be to at least rule out Lyme disease.
I am tired of being sick and non-functional. It may not be Lyme disease, but everything I have read...it fits. It never occurred to me either that it may be Lyme disease, and I should know more about this disease than I do, considering where I live.
Any help on talking to my DR would be extremely helpful.
Wecome kaydey you will geta lot of help here I will give you my long story another time it is very similar to yours ,first I will give the others a chance as like you I havent had much luck with Doctors .
I'm sorry that you've been sick for so long, but hopeful that you may now be on a path to answers/treatment. It sounds like other conditions have been ruled out, which does make Lyme a more likely suspect as it can mimic so many conditions yet evade testing.
I'm not an expert or anyone special, just a patient dealing with this illness.
I do not think you will have luck convincing your current doctor. You say that you've been looking around the site a bit, so I'm sure you've read that Lyme is often very difficult to diagnose and treat, and is misunderstood and underestimated by most physicians.
The term used by patients to designate doctors who will help us is "Lyme literate" physician, or "LLMD." Often times, only an LLMD will diagnose and/or treat late stage Lyme. Try doing an internet search of "LLMD" plus your city/state, and see if you get any names.
You may want to also look up International Lyme And Associated Diseases Society (ILADS). It has content spanning basic Lyme info to their treatment guidelines. Note that ILADS represents a tiny minority! Most doctors do not know much about, or even acknowledge, difficult cases of Lyme disease.
Other great info can be found in the book "Cure Unknown" (by P. Weintraub) and the film "Under Our Skin." Both have informative websites that are easy to find.
By all means, keep pushing your doctor. But you may well benefit from also seeking out an LLMD. Many have long waiting lists to get in for initial appointments, especially this time of year.
Take care and let us know how you're doing and what questions you have.
I'm not an expert or anyone special, just a patient dealing with this illness.
I do not think you will have luck convincing your current doctor. You say that you've been looking around the site a bit, so I'm sure you've read that Lyme is often very difficult to diagnose and treat, and is misunderstood and underestimated by most physicians.
The term used by patients to designate doctors who will help us is "Lyme literate" physician, or "LLMD." Often times, only an LLMD will diagnose and/or treat late stage Lyme. Try doing an internet search of "LLMD" plus your city/state, and see if you get any names.
You may want to also look up International Lyme And Associated Diseases Society (ILADS). It has content spanning basic Lyme info to their treatment guidelines. Note that ILADS represents a tiny minority! Most doctors do not know much about, or even acknowledge, difficult cases of Lyme disease.
Other great info can be found in the book "Cure Unknown" (by P. Weintraub) and the film "Under Our Skin." Both have informative websites that are easy to find.
By all means, keep pushing your doctor. But you may well benefit from also seeking out an LLMD. Many have long waiting lists to get in for initial appointments, especially this time of year.
Take care and let us know how you're doing and what questions you have.
Welcome to our Lyme neighborhood.
Many of us have wandered around like you have, looking for answers, until we stumble on something like this site, or a book, or a friend who has had similar symptoms. I'm sorry it took so long for you to find this clue, but you're here now.
If you can't locate an LLMD in your area, post back and we can scout around a bit. The ILADS website Wonko mentioned is very helpful in many ways.
Take care --
Many of us have wandered around like you have, looking for answers, until we stumble on something like this site, or a book, or a friend who has had similar symptoms. I'm sorry it took so long for you to find this clue, but you're here now.
If you can't locate an LLMD in your area, post back and we can scout around a bit. The ILADS website Wonko mentioned is very helpful in many ways.
Take care --
This is the first site I found that actually had ppl who seem to have been suffering like i am. I have printed out many pages ( sooo many pages) of research on Late Stage Lyme it isn't even funny.
I am not a hypochondriac, I rarely see my DR unless it is something I absolutely cannot live with or that I know I need treatment for.
For me to hear that this disease is not possible for me to have unless it is within a few mo of being bitten really gets my Gaul. Why don't physicians read the recent articles and data?
Thus far tonight...besides the previous print out from Robert Bransfield, MD., I have printed out three more medical journal articles explicitly about Late Stage Lyme.
The more I research, the more frustrated I get. I know this is what has been causing me to be ill for so long. And yet I have been forced to 'just live with it.'
I am not a hypochondriac, I rarely see my DR unless it is something I absolutely cannot live with or that I know I need treatment for.
For me to hear that this disease is not possible for me to have unless it is within a few mo of being bitten really gets my Gaul. Why don't physicians read the recent articles and data?
Thus far tonight...besides the previous print out from Robert Bransfield, MD., I have printed out three more medical journal articles explicitly about Late Stage Lyme.
The more I research, the more frustrated I get. I know this is what has been causing me to be ill for so long. And yet I have been forced to 'just live with it.'
BTW.. how do I find a Lyme Literate Physician? I live in South Dakota. The closest thing we have to a diagnostic unit at Mayo...and I have been there.
They released me because i was 'temperamental' and told one doctor to 'f'' off after he tole me it was all in my head.
It isn't all in my head. And the more I read about LSL the more angry I get.
I KNOW this is what is wrong, i know there is treatment (sort of) but tonight i am really getting upset knowing that my own doctor, the person who has taken care of me and my children for 23 yrs, is saying there is no such thing!!!!!
How do I deal with that????
They released me because i was 'temperamental' and told one doctor to 'f'' off after he tole me it was all in my head.
It isn't all in my head. And the more I read about LSL the more angry I get.
I KNOW this is what is wrong, i know there is treatment (sort of) but tonight i am really getting upset knowing that my own doctor, the person who has taken care of me and my children for 23 yrs, is saying there is no such thing!!!!!
How do I deal with that????
How far can you travel, and in which direction? There are people on this site who drive 4 or 5 hours to an LLMD and they find it definitely worth while.
Don't get too wound up about the 'late stage' aspect of Lyme. You are where you are, and while Lyme is easier to cure in the early stages, that means the very early stages, which most of us are long past before we finally get diagnosed and treated. Treatment of late stage (aka 'chronic') Lyme is harder and not as certain, but it's not hopeless.
Don't get too wound up about the 'late stage' aspect of Lyme. You are where you are, and while Lyme is easier to cure in the early stages, that means the very early stages, which most of us are long past before we finally get diagnosed and treated. Treatment of late stage (aka 'chronic') Lyme is harder and not as certain, but it's not hopeless.
Your story is pretty typical for many of us. We end up doing our own research and figuring out what we have. You could insist that your doctor order a lyme test but your best bet would be a LLMD.
Traveling is the problem. I am agoraphobic. For the past few years leaving my house has not been much of an option. And as I stated before the closest diagnostic DR I will probably find is at Mayo, in Minnesota....If I have to, I am willing to take enough meds to get to me a DR that will actually help me!!! (that means me being passed out for a couple of hours,, but, hey.....if it will get me a diagnosis that is real... it is worth it...:( )
I still need to find out where I can find a LLD... It is apparent that my DR is not one of them.
I also apologize for sounding so rude.... I am just frustrated. I am sure I finally know what is wrong with me, and yet my DR has no clue....
I will do whatever it takes to see a physician who is knowledgeable about this.. if it means me taking extra meds to make me sleep through the trip and to whatever hospital...so be it.
I am just so tired of being tired and everything else.
I also apologize for sounding so rude.... I am just frustrated. I am sure I finally know what is wrong with me, and yet my DR has no clue....
I will do whatever it takes to see a physician who is knowledgeable about this.. if it means me taking extra meds to make me sleep through the trip and to whatever hospital...so be it.
I am just so tired of being tired and everything else.
You do not sound rude at all. You sound sick and tired, and we've all been there.
Does your agoraphobia predate your illness? I ask because a lot of us with Lyme seem to be susceptible to sensory overload and can be uncomfortable with crowds and big places.
Go to google and enter the expression "how to find an LLMD" and you will find websites offering advice on how to conduct your search. There are online referral services. We're not "allowed" to post direct links to them because MedHelp wants you to stay here (and we do, too!) and they count that as promoting the competition.
Try to find an ILADS LLMD. Some of the services will let you check that as an option. This ensures that they have some extra exposure to current Lyme treatments.
Does your agoraphobia predate your illness? I ask because a lot of us with Lyme seem to be susceptible to sensory overload and can be uncomfortable with crowds and big places.
Go to google and enter the expression "how to find an LLMD" and you will find websites offering advice on how to conduct your search. There are online referral services. We're not "allowed" to post direct links to them because MedHelp wants you to stay here (and we do, too!) and they count that as promoting the competition.
Try to find an ILADS LLMD. Some of the services will let you check that as an option. This ensures that they have some extra exposure to current Lyme treatments.
Yes, you are just in that angry stage that it seems all of us go in and out of from time to time. Some more than others (me:).
As they said, try searching for an LLMD on ILADS. It seems like its a big secret to find one because 1) Medhelp will not let us post 2) Often they don't want their name plastered everywhere b/c they may get in trouble with their state licensing board and etc etc etc. It's a ridiculous mess b/c the CDC screwed up the entire thing years ago. You'll start recognizing some of the names of our allies and our "enemies" when it comes to Lyme. There are certain people who have been with the IDSA, mucking up our chances at being treated.
You need to watch the movie, "Under Our Skin" and read the book, "The Cure Unknown" by Pamela Weitraub (sp? - I think that's the author's name).
If you could possibly get a doctor to sign off on an Igenex Western Blot for Lyme, then you are off to a great start. You'll have to pay, unfortunately, about $475 and then you can submit it to insurance. Sometimes, you can slide it onto a non-literate MDs desk and they'll agree - but usually, they'll scoff and say Labcorp or Quest can do that. Yes they can do it, but no, they won't do it the best way possible and may very well give you a false negative.
Take care and good luck. You have found a great group here to help. They are awesome.:)
As they said, try searching for an LLMD on ILADS. It seems like its a big secret to find one because 1) Medhelp will not let us post 2) Often they don't want their name plastered everywhere b/c they may get in trouble with their state licensing board and etc etc etc. It's a ridiculous mess b/c the CDC screwed up the entire thing years ago. You'll start recognizing some of the names of our allies and our "enemies" when it comes to Lyme. There are certain people who have been with the IDSA, mucking up our chances at being treated.
You need to watch the movie, "Under Our Skin" and read the book, "The Cure Unknown" by Pamela Weitraub (sp? - I think that's the author's name).
If you could possibly get a doctor to sign off on an Igenex Western Blot for Lyme, then you are off to a great start. You'll have to pay, unfortunately, about $475 and then you can submit it to insurance. Sometimes, you can slide it onto a non-literate MDs desk and they'll agree - but usually, they'll scoff and say Labcorp or Quest can do that. Yes they can do it, but no, they won't do it the best way possible and may very well give you a false negative.
Take care and good luck. You have found a great group here to help. They are awesome.:)
Anxiety and crankiness are two things I had a lot of. I could see it happening, and just couldn't stop it. It's part of Lyme, and overload happens quickly and harshly. Be kind to yourself, forgive yourself, apologize to your family and friends when it happens, and plow ahead. Let us know what you decide to do and how it goes -- Best wishes!
I have experienced the anxiety/crankiness too - like Jackie California - I could see it happening - almost like someone else has taken over your body/mind - I couldn't believe some of the things that I heard myself saying!!
I too would reccommend you find yourself an LLMD. as you said 'doesn't matter how you get there - just get there - you will only become more frustrated/angry/anxious if you deal with 'main stream' docs. An LLMD. knows the whole picture of lyme - this is what you need. Lab. tests for lyme are not reliable - an LLMD. is where I would go first - that is once other possible 'illness' had been ruled out.
I too would reccommend you find yourself an LLMD. as you said 'doesn't matter how you get there - just get there - you will only become more frustrated/angry/anxious if you deal with 'main stream' docs. An LLMD. knows the whole picture of lyme - this is what you need. Lab. tests for lyme are not reliable - an LLMD. is where I would go first - that is once other possible 'illness' had been ruled out.
I have an appt on Thurs to talk to my Dr. When I scheduled the appt, I told her to leave me at minimum 45 minutes to talk to him and show him some of the articles I have found and printed.
Instead of the usual 15 min, she did schedule me for 1/2 hr. (better than nothing.) I am hoping he sees my profile in these studies. He has been my Dr for years and when it all started (about 1997-98) there were so many tests that I can't even remember them all, however, they didn't do a lyme test, which is stupid because of where I live!
If he doesn't agree to do the testing recommended in these articles then I will find another Dr... and I intend to tell him so.
I will keep you all posted... and thank so much for your support! I don't feel so alone anymore.
I think about getting here almost everyday, because you have all given me some hope, but that just isn't possible :( .
Instead of the usual 15 min, she did schedule me for 1/2 hr. (better than nothing.) I am hoping he sees my profile in these studies. He has been my Dr for years and when it all started (about 1997-98) there were so many tests that I can't even remember them all, however, they didn't do a lyme test, which is stupid because of where I live!
If he doesn't agree to do the testing recommended in these articles then I will find another Dr... and I intend to tell him so.
I will keep you all posted... and thank so much for your support! I don't feel so alone anymore.
I think about getting here almost everyday, because you have all given me some hope, but that just isn't possible :( .
No, the agoraphobia does not predate the lyme symptoms, if fact the depression began approx 5 yrs after my first symptoms and it slowly grew into other mental illness, I also have PTSD (which does predate, but that is something for another time.)
You saying that Lyme causes sensory overload is nice to hear (sort of) because I used to be a very outgoing person, always on the go, always in public, and now getting me to leave the house is nearly impossible. The bad about hearing it is that if I don't get help, all my effort to overcome the agor. would be a waste of time and energy.
I really hate being a prisoner in my home, but it is a better option than being in public.
You saying that Lyme causes sensory overload is nice to hear (sort of) because I used to be a very outgoing person, always on the go, always in public, and now getting me to leave the house is nearly impossible. The bad about hearing it is that if I don't get help, all my effort to overcome the agor. would be a waste of time and energy.
I really hate being a prisoner in my home, but it is a better option than being in public.
Thanks for staying in touch with us -- I know it's an effort, given how you feel.
A suggestion -- when you tell your Dr you are going to look for an LLMD, try to do it so that it doesn't end the relationship with the current Dr. You may need him/her in the future. A problem I run into is that my LLMD doesn't have the time (or actually the interest) to treat anything but Lyme+coinfections, and there are other illnesses and things that pop up over time for which you still need your regular Dr. And it sounds like you have a good relationship in some ways.
I am still searching for a 'regular' Dr for myself, and it's complicated to do, because I walk in with no history with this person in the white coat and launch into "Well, I have Lyme and here is the treatment I am on ..." and lots of drs just don't want to get involved. I am generally very healthy except for the Lyme (not even sniffles for the past 5 years, just Lyme -- my immune system must be on overload), but still there are times when I need to see a regular Dr.
Like we used to sing in the Brownies: 'Make new friends but keep the old' ... same thing goes for doctors.
Hang in there.
A suggestion -- when you tell your Dr you are going to look for an LLMD, try to do it so that it doesn't end the relationship with the current Dr. You may need him/her in the future. A problem I run into is that my LLMD doesn't have the time (or actually the interest) to treat anything but Lyme+coinfections, and there are other illnesses and things that pop up over time for which you still need your regular Dr. And it sounds like you have a good relationship in some ways.
I am still searching for a 'regular' Dr for myself, and it's complicated to do, because I walk in with no history with this person in the white coat and launch into "Well, I have Lyme and here is the treatment I am on ..." and lots of drs just don't want to get involved. I am generally very healthy except for the Lyme (not even sniffles for the past 5 years, just Lyme -- my immune system must be on overload), but still there are times when I need to see a regular Dr.
Like we used to sing in the Brownies: 'Make new friends but keep the old' ... same thing goes for doctors.
Hang in there.
I didn't mean to sound like I would fire him... in fact, it would be stupid of me to so. He is one of the Dr in town that has studied some immune deficiency syndromes like what my daughter has... she is IGg deficient. So I still need him on board.
But I will tell him (in these words) "If you can't help me, then maybe I need to find a physician that is able to" and go on to say that we still need him blah blah.... i was never going to be rude about it
He really is a good Dr. just somewhat 'close minded' I guess is the best way to put it. H*.. I don't know... maybe I am fooling myself about the whole thing.... maybe I should just fire him and find a different Dr.
It will really all depend on how he responds and reacts on Thurs. I am an educated woman, and he knows that. He knows my forte' is in research (Sociologist). Maybe that will be a point of fusion between us and he will listen.
But I will tell him (in these words) "If you can't help me, then maybe I need to find a physician that is able to" and go on to say that we still need him blah blah.... i was never going to be rude about it
He really is a good Dr. just somewhat 'close minded' I guess is the best way to put it. H*.. I don't know... maybe I am fooling myself about the whole thing.... maybe I should just fire him and find a different Dr.
It will really all depend on how he responds and reacts on Thurs. I am an educated woman, and he knows that. He knows my forte' is in research (Sociologist). Maybe that will be a point of fusion between us and he will listen.
I hear you. You won't fire him but you'd really, really like to smack him upside the head sometimes.
All the drs I encountered on the way to a Lyme and babesia diagnosis sounded like your doctor, more or less. Calm, firm, doing their best to deserve the white coat and the stethoscope. It must be hard for them, to be the 'authority' and then have that challenged. Once they've been challenged, what other tools do they have? Not many. They don't have the time or inclination to discuss the situation with the patient as a grown up ... it's The Doctor Thing. I see it not only in my doctors but also in close friends and family who are MDs. They don't know any other way to do it.
Once the drs step away from the security of the CDC/IDSA guidelines, they've nothing to go by, and that probably scares them because that's how they are taught to practice medicine -- with good reason, I might add -- but when the frontiers of medicine are reached, it takes a little more (or a lot more) gumption to go beyond conventional wisdom and try to sort things out.
I got concerned again today listening to Obama tell the AMA meeting in Chicago that there is a lot of money to be saved in medical things by adhering to 'established standards of practice' and 'proven treatments.' To keep all the doctors on the ranch by limiting practice to the 'standards' of the CDC/IDSA would take away the possibility of being treated for Lyme in the way that works ... bad news bears.
But I digress. You go, girl, and if you can educate your doctor to be your ally along the way, you will have achieved a great deal. Heck, when you get well, you will have achieved the greatest thing of all!
All the drs I encountered on the way to a Lyme and babesia diagnosis sounded like your doctor, more or less. Calm, firm, doing their best to deserve the white coat and the stethoscope. It must be hard for them, to be the 'authority' and then have that challenged. Once they've been challenged, what other tools do they have? Not many. They don't have the time or inclination to discuss the situation with the patient as a grown up ... it's The Doctor Thing. I see it not only in my doctors but also in close friends and family who are MDs. They don't know any other way to do it.
Once the drs step away from the security of the CDC/IDSA guidelines, they've nothing to go by, and that probably scares them because that's how they are taught to practice medicine -- with good reason, I might add -- but when the frontiers of medicine are reached, it takes a little more (or a lot more) gumption to go beyond conventional wisdom and try to sort things out.
I got concerned again today listening to Obama tell the AMA meeting in Chicago that there is a lot of money to be saved in medical things by adhering to 'established standards of practice' and 'proven treatments.' To keep all the doctors on the ranch by limiting practice to the 'standards' of the CDC/IDSA would take away the possibility of being treated for Lyme in the way that works ... bad news bears.
But I digress. You go, girl, and if you can educate your doctor to be your ally along the way, you will have achieved a great deal. Heck, when you get well, you will have achieved the greatest thing of all!
OMG this is just unbelievable, we are all in the same boat....but not a sinking one!!! Kaydey, I think the Dr's feel intimidated, especially when we know more than them on this topic. I am waiting for my second set of results to come back, very anxious to see what the WB has to say..the first time two years ago I tested positive for lyme, went on Doxy for a month, rash came back a few months later. He stated there is no way I was re-infected again. Well believe you me...I am still sick...I really think if you have lyme, you will always have chronic lyme...anybody have thoughts on this? Kaydey hang in there and pursue all the tests required. If you still have the infection I believe the IGm will come back with the bands reactive with a current infection, am I correct by saying this guys? Also, go with the LLMD if you can find one. I believe the closest one to me is Springfield and I heard that he is a good one. Take care and good LUCK!!!
I've read that a pos IGG is more indicative of a CHROINC longstanding infection. Where as the IGM is for the current/new infection. I think. Anyone correct me if I'm wrong on this...
Skarey, thanks for the input, I am real curious how this blood work comes back...I wonder since I was treated and it was IGm, if it now will go IGg positive...I am learning so much through you guys..I only had one band positive for IGg. I think it takes 2, I had 2 for the IGm. I'll keep you posted. Also, OMG did you watch the trailer on the Under the Skin, that is terrible. Thanks again
Chatter
Chatter
I am not the one who is IGg, it is my daughter, although it is an inherited trait.
If any of you are diagnosed with IGg or IGm, make sure you see an immunologist! Regular physicians (pardon me) SUCK at diagnosing and making a Rx plan. But once they get a Rx plan from the immunologist they can usually hand the Rx and monitor the imbalance.
Btw, IGg is something you are usually born with, but it may not show up until adulthood.
There are 4 parts to the immune system 1, 2, 3, 4 they are paired up 1/3, 2/4. Each sector controls certain functions of immunity, eg., the muscles, nervous system, mucous membrane, blood. Depending on the duo you are diagnosed with determines the Rx you need.
My daughter has the first set. By now she should have outgrown it, but she one of the fewer than 2% that have not. And she will probably never be free of it.
The Rx for this GammaGlobulin therapy. She first started when she was 1... after 11 hospitalizations and only a total amount of 6 wks NOT on antibiotics. At that time the Rx was new, and harsh and painful. It was injection 1x a week for 7 wks.. BUT.. each week the injections increased, eg., wk 1=1inj , wk2=2inj, wk3=3inj until the 7th week which was 7 injections.
Good news for patients today... they put in a central line with a hep lock. And the treatment is IV so no more injections.
My daughter has had her line in since she was 8, it has had to be changed a few times, daily cleaning and flushing must be done.
Good news, she is doing well.
here is a link for immunodeficiency
http://www.immunediseaseeurope.com/ideu/patients/IDF/igg_subclass.html
If any of you are diagnosed with IGg or IGm, make sure you see an immunologist! Regular physicians (pardon me) SUCK at diagnosing and making a Rx plan. But once they get a Rx plan from the immunologist they can usually hand the Rx and monitor the imbalance.
Btw, IGg is something you are usually born with, but it may not show up until adulthood.
There are 4 parts to the immune system 1, 2, 3, 4 they are paired up 1/3, 2/4. Each sector controls certain functions of immunity, eg., the muscles, nervous system, mucous membrane, blood. Depending on the duo you are diagnosed with determines the Rx you need.
My daughter has the first set. By now she should have outgrown it, but she one of the fewer than 2% that have not. And she will probably never be free of it.
The Rx for this GammaGlobulin therapy. She first started when she was 1... after 11 hospitalizations and only a total amount of 6 wks NOT on antibiotics. At that time the Rx was new, and harsh and painful. It was injection 1x a week for 7 wks.. BUT.. each week the injections increased, eg., wk 1=1inj , wk2=2inj, wk3=3inj until the 7th week which was 7 injections.
Good news for patients today... they put in a central line with a hep lock. And the treatment is IV so no more injections.
My daughter has had her line in since she was 8, it has had to be changed a few times, daily cleaning and flushing must be done.
Good news, she is doing well.
here is a link for immunodeficiency
http://www.immunediseaseeurope.com/ideu/patients/IDF/igg_subclass.html
So, I went to my Dr. It is amazing how much is said by body language. He took my printouts, said he would 'look into it' but didn't think my symptoms added up to Lyme. When I tried to talk to him about Late stage or Chronic Lyme, his response was HMM, I have never heard or read anything about that. But his face told me he didn't believe me.
He said he would get back to me this coming week 'sometime.'
I did tell him that I wanted him to continue to be my Dr, because he knows my complete history and knows all the tests that he has ordered through the years and that the best bet for us finding out for sure was for him to continue to be my Dr.
I followed that up with, 'but if this is something you don't believe can happen then maybe I should look for a Dr who is familiar with this.' He said "that may be a possibility" but his body language was ... You B* I talked to him for a whole 10 min before he walked out the door.
So, now I am just waiting to hear back from him....doubt it will happen. So on Monday i am starting a search for another physician in town. Who knows, I might just find one that is willing to work WITH me instead of against me.
He said he would get back to me this coming week 'sometime.'
I did tell him that I wanted him to continue to be my Dr, because he knows my complete history and knows all the tests that he has ordered through the years and that the best bet for us finding out for sure was for him to continue to be my Dr.
I followed that up with, 'but if this is something you don't believe can happen then maybe I should look for a Dr who is familiar with this.' He said "that may be a possibility" but his body language was ... You B* I talked to him for a whole 10 min before he walked out the door.
So, now I am just waiting to hear back from him....doubt it will happen. So on Monday i am starting a search for another physician in town. Who knows, I might just find one that is willing to work WITH me instead of against me.
I'm so sorry to hear this. Unfortunately, your encounter with your doctor sounds very similar to others that have been posted here.
For doctors who know anything about Lyme, the term 'Chronic Lyme' can set off alarm bells, because while even the CDC agrees that there is Lyme disease, their rule is that it's easily cured by a short course of abx, and if anyone continues to have symptoms after that, it's an over-reaction of their immune system to a now-cured disease, and therefore there is no such thing as Chronic Lyme.
Actually, I agree with the idea that there is not a separate disease ... it's still Lyme, it just hasn't been cured.
My suggestion, if you don't mind me giving my 2 cents? -- Look for an LLMD, and if you need your Dr Unfriendly for run of the mill things, then go see Dr Unfriendly. I would tell him what you are taking for Lyme, if anything, when you see him, just as you would with any other doctor -- they need to know what other meds you are taking to avoid conflicts, right? But don't expect Dr Unfriendly to be warm and fuzzy about the Lyme or the treatment.
What is important now is that you find an LLMD and get fully tested and diagnosed.
For doctors who know anything about Lyme, the term 'Chronic Lyme' can set off alarm bells, because while even the CDC agrees that there is Lyme disease, their rule is that it's easily cured by a short course of abx, and if anyone continues to have symptoms after that, it's an over-reaction of their immune system to a now-cured disease, and therefore there is no such thing as Chronic Lyme.
Actually, I agree with the idea that there is not a separate disease ... it's still Lyme, it just hasn't been cured.
My suggestion, if you don't mind me giving my 2 cents? -- Look for an LLMD, and if you need your Dr Unfriendly for run of the mill things, then go see Dr Unfriendly. I would tell him what you are taking for Lyme, if anything, when you see him, just as you would with any other doctor -- they need to know what other meds you are taking to avoid conflicts, right? But don't expect Dr Unfriendly to be warm and fuzzy about the Lyme or the treatment.
What is important now is that you find an LLMD and get fully tested and diagnosed.
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