posted
What do they do? Sometimes I weigh telling them but sometimes I think that the reason I am seeing the dr. may be caused by Lyme or the medication (like today when it seemed like my 3.5 year old had a yeast infection).
The dr.seemed to go from 0-60. Asked me who was treating her, I played dumb - I'm not sure it is necessary for her to know. She asked me three times. She also asked me twice how long my daughter has been treating and when did she have a tick bite. I said a couple of weeks and left it at that. She dug further and said "three weeks? Because that is far too long...." I cut her off and just said "a couple of weeks."
It's hard enough to manage the treatment of the entire family and myself with this happening when I'm just trying to be sure to take care of everyone. I realize she is probably coming from a place of concern, but I just wanted to go to "oh, you really have no idea what this disease is doing to me any my family." I didn't but I wanted to.
This probably belongs in another category than medical advice, but I don't see a way to move it and I'm out of energy to retype it.
Wondering about others' experiences. This makes me not feel like I can just be open with regular doctors and that makes me upset.
[ 06-14-2012, 06:43 PM: Message edited by: YinYang ]
Posts: 274 | From United States | Registered: Feb 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah i broke down and told a couple of docs i was being treated for lyme.
didn't work out too well either. ain't seeing them anymore....
regular docs just don't understand and don't want to.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As a parent of a child, you have to be very careful.
Some parents have been accused of "Munchausen by Proxy" and had the child removed from their care - all over lyme treatment. This is not all that uncommon, actually.
I would do all you can to treat your child yourself for things like yeast infections, etc., in conjunction with the LLMD or a LL ND.
Most of us had to give up long ago going to a regular doctor - for anything - as they could usually never help, anyway. A person with lyme is VERY different from the typical patient. VERY.
Especially for yeast infections, there are many things we can do ourselves. But, for a small child, if your LLMD has not properly addressed how to prevent and manage yeast problems, you may need to also find a LL ND (naturopathic doctor).
There are many past threads with details, and good professional links:
Ten threads - -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also regarding "Munchausen by Proxy" you need to be very careful with whom you share any details of your child's lyme journey.
You can never know who will say what to whom. There are many in the "regular" medical field who can come down very quickly against parents treating children for lyme.
Be careful out in public, even in a lunch booth, just don't talk about this to anyone other than your closest circle of trusted friends. And tell them not to talk about it in public, either.
I don't want to frighten you but this is a very serious matter indeed.
Normally, I'm all for openness. But that can result in loss of child custody where lyme treatment is concerned. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I've had 5 arrogantly closed minded docs treat me badly. I just went through it recently too (caught off guard). Now when I go to an apt, I take a note with me (as a reminder) that says, ILADS. I just did this (6th doc).
Start telling docs you follow the ILADs protocol. Most of them are clueless and don't know what it is (I did this with my PCP and it shut her up on that apt.). If your doc asks anything further, then that is your opportunity to say, it's cutting edge stuff.
Then, if they ask anything further (like symptoms or meds), just tell them you can't remember. I can never remember anyway. I just tell them that that is part of lyme (brain fog).
Seriously, they don't know what ILADS is. They've been trained to try to protect their patients from sham lyme docs who are taking their money running all kinds of fancy tests. Don't even bother trying to penetrate that bubble around them (I've tried). Just say, I appreciate your concern, however I have decided to follow the ILADS protocol.
If they are ask you another lyme question, change the subject.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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poppy
Frequent Contributor (1K+ posts)
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posted
Unless a doctor knows something about lyme, it usually doesn't help to tell them. And sometimes hurts.
I know this should not be true, and one would think that a doctor should know what else medically is going on with a patient.
But generally the best thing to do, if you must reveal this, is to also say that you understand there is controversy and that you are not there for lyme treatment and do not wish to discuss specifics about that treatment. Try to get the doctor to stick to the problem you came for.
Some docs will get mad at this and you would be better off without them in your life. Because anyone who does have a bad reaction to your statement, even if you say it with a smile, may be looking for information to use against you or your doctor.
And a lyme doctor should be helping you with yeast problems. Nystatin, diflucan can be prescribed. Or there are alternative non-prescription things which are frequently discussed here.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
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posted
- For a child, though, if a regular doctor is set on "Munchausen by Proxy" using the term "ILADS" will not appease them.
Most likely at just a "few weeks" on antibiotics, your custody of your child would likely not be challenged. But the doctor may not stop there and may inquire further.
The grilling you got from this doctor is a major red flag. I would not return to that doctor.
That kind if grilling often precedes a major legal battle for a patient's LLMD.
Although you did not divulge the name, if there is anyway that LLMD could be figured out by the regular doctor, you need to just give a head's up to the LLMD.
If that regular doctor calls your pharmacy, could the LLMD's name be given out?
If your insurance company covered any tests for the LLMD, that detail may also be available to the regular doctor.
It's very different regarding the care of a minor child. Parents don't have the luxury of saying, "Well, we're treating this way" as, if against "standard medical procedure" the parents can loose.
ILADS' treatment has lost to "Munchausen by Proxy" legal contests and so have some parents and children.
So sad to even consider all this but knowing about it can help. -
[ 06-14-2012, 06:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I was lucky this way with my family doctor. Basically, he said that he's glad I'm being treated if I feel that's what I need. He restated his views somewhat, but to me it seemed as if he were relieved that he wasn't going to be dragged into a confrontation about it with me. And he said he was glad I was going to continue to see him for my 'general' medical needs.
I am convinced that he does not want to be drawn in to the lyme scene because of the College of Physicians. I don't believe there is a LLMD in Canada anymore due to their bullying. If there is I don't know of him/her. I see an LLND.
Posts: 161 | From vancouver island | Registered: Feb 2012
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randibear
Honored Contributor (10K+ posts)
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posted
hmmmi i think i remember a case where the child said something at school about being treated for lyme. well the teacher didn't believe in lyme, called in the school doctor, and then they called the social agency, parents were involved and the child was taken away for awhile.
it was a real mess.
can't rememeber the final outcome tho.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme is discussed here but the scope of the article goes beyond that. Same author of the lyme book "Cure Unknown":
posted
Wow, I had no idea about all of this. As if having sick children and being sick yourself wasn't enough. I'll be certain to be very guarded moving forward. This is absolutely not something that I'd like to go through. How horrifying for those parents.
The confusion of all of this just gets deeper and deeper...
Posts: 274 | From United States | Registered: Feb 2012
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posted
I had an appointment with my TMJ specialist yesterday. I hadn't seen him since before my lyme diagnosis. I was hesitant but decided to tell him. He didn't seem shocked or withdrawn. He didn't question me...it was nice. He said lots of his patients are people with CFS and FM. I asked if he saw many with lyme. He said no but many of them may have it and just not know it. I was pleasantly surprised.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
I found a GP who has been great. He said at the beginning that he was not sure that Lyme is the problem, but after he ruled out other options has been very open.
I explained at our first appt that I was skeptical too (no clearly positive labs), but that I didn't see any other choice; it was try antibiotics or continue to suffer.
Doesn't bat an eye now when I give him my list of meds.
He's a good one; admits he doesn't know everything, and that the medical field has much to learn. THAT, in my opinion, makes all the difference in a doctor.
Posts: 330 | From TN | Registered: Sep 2011
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posted
8 or 9 suggested psych evals? You must be a very strong person to endure that. How awful...
Posts: 274 | From United States | Registered: Feb 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by YinYang: Wow, I had no idea about all of this.
. You can read all about this in the book Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub
I read this book and think it's a must for all of us to read. It's very good and explains how things got so twisted with this disease.
Posts: 161 | From vancouver island | Registered: Feb 2012
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posted
I guess I might be a bit freer to discuss, as I don't have any children to endanger.
I stand up to the doctors, and I don't shut up. I have brochures, lots of facts, and I just keep talking until they listen.
If the doctor walks out, I then educate the staff, who can't walk out. I have educated an ER dept and a dental school. We are right and they come from ignorance.
I also found that when I keep it more personal, it works better.
I mention the data of our contracted cases here, including one where the dog brought the tick into the home and that's how the person contracted Lyme.
When the doctor heard that, he got worried because he was going to walk someone's dog that week.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
I'll add that book to my "light" summer reading list! I've always been someone who felt compelled to stand up for "right vs wrong" it's appalling, though that there are people that may feel they understand fully something they've never endured. That is simply not how people should operate.you nev know what someone's life is like until you walk a mile in their shoes.
Plus, there are so many more terrible injustices in this world to tackle, why would anyone make it their mission to take a sick child from their parent?
So disheartening for humankind.
Posts: 274 | From United States | Registered: Feb 2012
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linky123
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Member # 19974
posted
I would not trust any "regular" md. Ever. I have had nothing but bad experiences with them -
everything ranging from ignorance to downright hostility.
What good does it do to discuss it with someone who doesn't get it and will probably just make things more difficult for you?
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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map1131
Frequent Contributor (5K+ posts)
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posted
Majority of the time they start speaking stupid talk, because they know nothing about it.
Some day soon they will have to learn something.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Even for parents, while it's important to be on guard with regular doctors, to feel connected & also proactive regarding lyme,
contact area and state lyme support groups - or national ones. Either for more detail or to become an activist on some level.
Your voice - or efforts behind the scenes can make a difference that way.
And you can find the lyme-friendly doctors for basics. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'll say it again - even if the doctor may not be interested, we have ample opportunity to tell the staff and get them educated. It's about telling people what's going on, as in "you could get this too" kind of thing.
Posts: 13117 | From San Francisco | Registered: May 2006
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dbpei
Frequent Contributor (1K+ posts)
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posted
I had a horrible experience with my PCP. I had hoped she would join forces with me once I learned that it was Lyme Disease that had likely caused my hearing loss and other symptoms. Instead, she became hostile and my annual physical turned into a debating round.
I am done with her. Had her for almost 10 years and I was hardly ever sick until this! I searched around by networking with other lyme patients in my area (support groups and posting on local forum) and asking if they had any 'lyme friendly' PCP's.
I learned of a doctor who stood by a woman who was critically ill with chronic lyme - treated for over a year and now doing much better. This doctor was perplexed by her symptoms and could not help her but the lyme doc did. He had respect for her treatment - and so far he has had respect for mine.
I was worried about some strange feelings of faintness when I changed positions and he took that seriously. After a normal EKG, he had a heart holter monitor hooked up by a cardiologist and I learned that I have a healthy heart. After that, he suggested that my problem is probably related to Lyme and suggested I discuss with my Lyme doc.
I feel like we are a team. Thank God I am done with my old doc. I would strongly suggest searching in your area the way I did and that way, you have medical back up and can team up with your doc in case you need his/her help.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Our family dr. is a DO. When we first started to going to him, I brought him Lyme brochures, info, etc.
He was grateful for getting the info, knows Lyme is a problem. I have found that DO's tend to be more open-minded and willing to "learn" from a patient.
Healer
[ 02-01-2013, 06:56 PM: Message edited by: sixgoofykids ]
Posts: 163 | From New Jersey | Registered: Oct 2009
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littlebit27
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posted
I gave up telling docs. I was tired of the fighting, and I couldn't handle everything they said to me. I tell them I have Bartonella and that usually confuses them because most don't even know what that is. . .
posted
I just don't mention it anymore....I just told my dermatologist because he wanted me on some antibiotics...
Well he said "Are you sure...people are misdiagnosed with Lyme all the time! Or their Dr's just hand out the diagnosis like candy"....What?!
I even had Dr's tell me that people use Lyme to get pain pills and that's the only reason they are diagnosed...
No wonder it took me seven years to get properly diagnosed!
Posts: 148 | From AZ | Registered: Sep 2011
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map1131
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posted
I'm so blessed to have a PCP that called it possible lyme, then dx it lyme and has been on my side since '99.
He doesn't know all the answers. He tried his darnest to nip it in the bud early on. He was thrilled went I started with a LLMD and then sad when there still wasn't a cure for me.
I don't know how I would have made it through this illerate medical establishment without him. I feel for those of you that only have a LLMD that's usually hundreds of miles away.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Pam,
Many more have no access to a LL doctor at all.
Travel and cost are each huge obstacles that many have no way to manage.
I sure hope this changes someday but, with the IDSA's push against lyme and the insurance "industry" also so against treatment and LLMD coverage, those are mighty huge hurdles.
The "stigma" on patients from the conventional medical circle, the media, and families and friends just adds to the burden.
Actually, the media do not intend to stigmatize those with lyme but they sure do so out of their ignorance, laziness and/or resistance to learn the truth. Every time they are a puppet for the IDSA's anti-lyme stance, nails in coffins.
So, never wanting to leave on a down note, at least the world wide web and sites such as this and other leading lyme educational outlets are a life saver for many to try to figure out then:
how else? -
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