posted
Just had appt with neurologist at my LLMDs urging due to tremors and leg weaknesses.
Neuro has been treating my migraines and skull fracture (from accident back in 1969) for 17 years, and I feel confident in his expertise.
Neuro read report my LLMD had written, then said , "I think alternative or integrative medicine has uses, but we need to rule out some things with an EEG, EMR, and MRI."
I was ok with all that, but then my DH said, "could you recommend someone for a second opinion on the Lyme?"
I was stunned. We've had this doc (LLMD) for 17 years. He was in a traditional med practice until earlier this year when he began training in integrative practice and learning about Lyme.
Both neuro and hubby talked about the "controversy" of lyme and its treatment. Later, when I asked DH about it, he said he just wants me to get better and that it's hard to see me like this.
Have any of you dealt with this clash of western med, docs, and family? How have you handled it?
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
A difficult situation for sure. Your husband is seeing you get treated for a very long time and thinks you should be well by now. We would all like to be well. The trouble is that it is chronic in some people and they need treatment to stay functional, and cure is not really the goal.
Go with your own gut feeling about this. If you feel it is time for a change, then do it. If you don't think anyone else has the silver bullet, then stay put.
And thank your husband for his support all this time and maybe say you understand his feelings, but you will have to be the one who makes the final decision, after considering all viewpoints.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did DH see the recent ILADS conference video stream? If not, can you get the confernece on DVD?
That background is necessary. It sounds as if he is not yet aware of all the complexities.
Sadly, his asking the neurologist also diminished you in that doctor's view. I'm sure it must have been both a shock and a blow.
Though I know DH means well, his asking the neurologist for a LL recommendation is not going to help. I hope your DH can come to understand why and how important it is to not put you down in front of any doctor.
That your DH asked, implies to the neurologist that he did not trust your judgement or that of your LLMD.
As well meaning as he is, I would never let him sit in on another appointment UNTIL he becomes highly LL. Even if as kind and well meaning as can be, he could torpedo your case.
Dynamically speaking, it's also demoting you to the "child" position (in the neuro's eyes) for the two of them to be discussing your case.
However, you might still seek out all your LLMD and LL ND options. Ask around at the area lyme support groups, etc.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "EEG, EMR, and MRI."
ANY testing should be discussed with your LLMD and, if possible, ordered, guided and interpreted by a LL doctor.
Not everything is lyme, of course, and some additonal tests may be of help (or not) but, often, they are done in the wrong way for someone with lyme or not interpreted correctly.
For those with lyme, a QEEG is often much better. But that is not considered to be mainstream. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Neurologist disputes lyme -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Have any of you dealt with this clash of western med, docs, and family? How have you handled it?"
Yes, yes, yes!!! This was a constant struggle at the beginning.
I've since learned what alternative and what conventional treatment work for me and what does not.
I went to family members A LOT at the beginning and then I realized I needed to be my own advocate. Even the most well-meaning just wasn't giving me the best advice.
I only trust the opinion of 1 family member at this point and leave the rest out of it.
I keep my decision making about my health AWAY from family and my partner unless I know they respect my judgment.
It can be very frustrating because a spouse wants the best for you, but may offer suggestions that aren't good for you.
I remember one time my spouse wanted me to "power through" an antibiotic I was taking even though I was having bad effects (it turned out it was an allergic reaction). He just wanted me to get well, but didn't understand the need to stop.
I have since just kept my treatment plans to myself and it's created MUCH MORE peace in the relationship.
Sure, I'd like to have TOTAL support and understanding. Unfortunately, living with Lyme and other controversial illnesses is just alien to even the most caring family members.
Posts: 2839 | From California | Registered: Jul 2012
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I think Poppy said it wonderfully. sounds like everyone has your best interest at heart. the controversy can sway even those of us who have lyme. a 2nd opinion does not mean you have to take it. It can be good to hear things from a fresh set of eyes and then discuss with your LLMD.
Posts: 1728 | From USA | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I've had to deal with this too (force yourself to respond if this happens again). Has your husband seen Under Our Skin, or read Cure Unknown (good places to start)? You were probably so stunned you couldn't speak (been there).
It sounds like your husband could benefit from some wifely preparatory skills before both of you enter the doctor's office. You could also just leave him home, but I think it's helpful for both of you to hear what your doc has to say.
I want my husband there even though he sometimes dismisses something I've said (chauvinist). The one place I simply won't tolerate it is at the lyme doc's office. I just tell him (right in front of the doc) that he (hubby) doesn't have the whole picture, but I do. Or that I'm lyme literate, and he (hubby) is not. End of story (he backs down). Then he gets a noodle lashing once we leave. You'd think he'd learn (ha ha)!
So now that it's out there, if you feel another lyme doc might be better for you, go for it. I eventually went for the very best doc I could find. That way I wouldn't be second guessing all the time.
-------------------- --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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posted
Thank you for you wise counsel, and , Poppy, you're right, he just wants me better.
Yes, I need him to learn more about Lyme, but he seems almost afraid to.
As for the tests, my LLMD is the one who referred me to my neuro for the tests. Due to a serious skull fracture ( decades ago), my LLMD thinks/fears that Lyme may have gone to the scarred areas of my brain.
My tremors, leg weaknesses, and slower speaking pace have caused my LLMD to rule out other serious problems. Notice I did not say more serious.
Again thank you. I think/know/fear that I also have parasites due to some research, doctor's words, & evidence in stool this week. I do want to see a light at the end of this. I want more than two good days a month back. I am looking for support, wisdom, and hope.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I forgot to mention that lyme makes many of us much more insecure and timid (not that you are). I believe it likes to hang out in that portion of the brain. Unfortunately, I have let more things said to me slide than I used to. I am just now getting a handle on this (feeling better). Hang in there Dove. I think once you jump on the parasite bandwagon you'll get past the two day mark in no time. :)
-------------------- --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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