posted
I have been treated for Lyme for a year, and now my fiance has suddenly come down with the symptoms. Forget how she got it - that is up for debate. Her primary doc says, after three weeks, it is either a bad virus or most likely Lyme. She says if it is Lyme, she will treat her. I want her to be on ABX NOW! I can't stand that they are dragging their feet, meanwhile my fiance can barely get out of bed. (nauseau, joint pains, back and spine pain, dizziness, weakness) She told my primary about my LLMD, who offered to treat her, but her primary told her she must choose between the two docs. I suffered for nine months before I found a LLMD to treat me, and I don't want the same to happen to her. How can I instill that urgency in my fiance?
------------------ Thanks, Rick
Posts: 136 | From Poughkeepsie, New York | Registered: Jul 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
You are so right to urge her to get treatment NOW. I had dizziness as one of my earliest symptoms. Since I didn't know the cause, I got on that merry-go-round of specialists which only increased the dizziness.
My symptoms progressed rather rapidly, resulting in disorientation, getting lost in my own yard, etc.. I couldn't figure out how to tie my shoes. Could barely walk anyways so I guess it didn't matter much. I walked into things, couldn't clap my hands together 'cause I'd miss the other hand.
If I had gotten treatment early, I could've probably avoided what I'm going through now. Months and Months of orals and now looking at a PICC line in a few weeks for IV meds. Without proper treatment, IT WILL GET WORSE requiring lengthier, more aggressive treatment.
Rick, When I was so bad, I didn't feel like I could make it to the doctor's office and told my husband no repeatedly. I wanted help at the same time but confused and scared. You may need to take charge as she may be too scared, too sick, incapable of thinking clearly etc.. Put her in the car and race to the LLMD.
Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Ditto - about the need to URGE her to start treatment as soon as possible.
But here are my thoughts, and keep in mind I just woke up and I'm on narcotics for pain, and by brain is also almost fried because of the spirochetes...but here goes.
Did SHE watch you suffer until you found your LLMD?
Has she seen / heard about you HERXING? Could she be scared of that?
OK - here's where I would be nervous, if I were her -- She's afraid of losing her regular doc. Maybe she likes her regular doc and doesn't want to have to go thru all the drama and BS of finding a new one.
But this is what she needs to consider:
IF reg. doc knew much about Lyme -- if she were truly Lyme literate -- she'd probably throw your fiance's head back and SHOVE antibiotics down her throat NOW.
BUT NO - she's not going to do that, because I'd be willing to bet that good ol' reg. doc will only want to treat her for about 6 months - maybe 2-3 months MAX!
So all her waiting around for reg. doc dumb @$$ ain't helping her NOW or even in the long run.
Perhaps you could encourage her to go with YOU to your next LLMD appt? Got one anytime soon? Can you make one?
Ultimately newsman -- it's her body, her pain, her suffering, and her decision.
This is her 'journey' and even if she doesn't make what we consider to be the "right" decision - it's still all up to her.
My suggestion is to pray for her; talk with her; appeal to her sense of logic; LOVE her; and then shut up and wait.
If her pain starts getting bad enough...she'll start scrambling for the phone to call your LLMD.
I believe all will work out....it may not work out in the time OR way you'd prefer -- but it's all OK. (<----that's my narcotic pain medication getting in touch with my spiritual beliefs right there...hope you enjoyed that.)
Hope that helps a bit.
Blessings,
------------------ DR. Wiseass - not a real doc - just a real wise ass. www.twistoflyme.blogspot.com
posted
Thanks for your replies! You are right, she trusts her primary and believes she will get to the bottom of it. (but after she waits ten days for her next apt.) Also, I did take my fiance to my LLMD...who said it could be Lyme and, if so, she wanted to treat her. My fiance's primary had originally put her on doxy the first week, but she was feeling worse, which they attributed to an allergic reaction to doxy. But I believe it was a herx, since the symptoms haven't gone away since stopping doxy two weeks ago. Yes, she watched me suffer for nine months as docs gave me the runaround. I am about 90% now, starting to taper off abx after a year. But she has a chance to clear hers up before all that, yet it's so frustrating because the doctor has no urgency to do so. Thanks for all your replies!
------------------ Thanks, Rick
Posts: 136 | From Poughkeepsie, New York | Registered: Jul 2004
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posted
Hi Rick, I know this is killing you, sitting around and waiting, if we could all learn from others experiences, wouldn't life be grand.
I just don't understand a PCP who can't stand to let go. So if your fiance had cancer or heart disease I guess this Dr. (quack) wouldn't send her to a specialist then either. This Dr. is just arrogant to make her decide who she is going to see, I do understand, noone could talk to me either, I thought my PCP had my best interest at heart. For four years until he told me to go see a psychiatrist.
Sorry if I seem bitter, but after 8 years of this, I just wish I had had a LLMD available to me right away.
Keep supporting her and remind her the Dr. works for her.
My husband will soon be tested again. He was positive the first time, did great after 5 months of orals, but now after 2 years he seems to be relapsing a bit.
Best Wishes to you both Cindy
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Posts: 906 | From San Francisco Bay | Registered: Jun 2001
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posted
Thanks Cindy. Her PCP is waiting for another week, until their appt, to make the next step. Meanwhile, symptoms are getting worse, joint pain, heart racing, leg and back pain, shortness of breath. The Western Blot from the PCP came back negative. My fiance has been off all abx for two weeks...and she seems to understand she must demands treatment from her PCP next week. Thanks.
------------------ Thanks, Rick
Posts: 136 | From Poughkeepsie, New York | Registered: Jul 2004
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Someone calls the PCP TODAY and says I WANT TO START TREATMENT....NOW. Call in the antibiotics at such&such pharmacy and pick them up!
She and you can determine what treatment she gets.
Let the PCP count on Lyme first, the virus second.
I trusted my PCP and was given 1 week abx. That was 9 yrs ago. Every lyme test done is NEGATIVE. I came up with an indeterminate reading after her 1 week antibiotic.
Back and spine sounds just like me last summer... Doesn't she feel like dying from pain? Isn't she crying herself to sleep? I have had many virus' before, but do they really do this to you? I don't think so.
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Morningnewsman,
Next week?! I agree with Lymester. First of all isn't it stated that "Virus" in the summer months should be very suspect of Lyme?
Secondly, ?clinical diagnosis? One week of Doxy? Allergic reaction?
I think most of us here have trusted our PCP to do right by us and I believe they try, but are limited in their knowledge of Lyme. This seems to be the case here. IMO only, I think a good PCP does not make you choose between two docs. I understand her allegiance to her PCP, but this is her health. Her symptoms are too severe to be waiting.
The other thing that she may consider, is, we won't speculate how she got it, but there may be the possibility of passing it back and forth? If I had to do over, as many of us wish we had the opportunity to do, I would've went right to the LLMD.
Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Thanks for the replies, which I agree with. I know she should get treatment. I know that each day that goes by it only worsens and becomes more difficult to treat. But she simply refuses to go back on the ABX wihout her PCP being in on it, and the doc is away until next week. It is frustrating that there is no urgency, especially since she saw me suffer and go around in circles until I saw my LLMD after 9 months. I impore her that she just cannot let this drag on, because it will be much more difficult to eradicate. But many surrounding her still don't think she has Lyme, and some use the negative tests as proof. She says by me pestering her with the horrors of Lyme as she waits, I am only making her more upset. I say she should be upset, that this is VERY serious, and much more so unless she gets treated NOW. That is my frustration. Thanks very much for your input.
------------------ Thanks, Rick
Posts: 136 | From Poughkeepsie, New York | Registered: Jul 2004
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