posted
I don't know what to do. My husband has Lyme Stage 2. He was treated orally for 2 weeks, then symptoms came back (fluid in knee, joint pain, fatigue). They put him on a midline, after 1 week of the midline treatment, he got C. Diff, and had to go to the hospital for 2 days. The hospital Dr. took him off his Lyme treatment and thinks he should treat C Diff first (for 2 weeks), then maybe go back on the Lyme Treatment. He is going to a Rhematologist for Lyme, who we haven't been able to get a hold of since going to the hospital (5 days ago). My husband's Lyme symptoms have all come back and I'm scared it will just get worse while he's not treating it and it won't ever go away. Please help.
Also, is there a support group anyone knows of? He is really in need of some support from people who know what the heck is going on.
Thank you!
Posts: 4 | From Northern VA | Registered: Mar 2013
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Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm not surprised you haven't been able to get a hold of his doc.
Your best bet is to find a lyme literate specialist fast(LLMD, or LLNP, LLPA, LLDO, LLND). You can post here in seeking or go to www.lymediseaseassociation.org. They will email you some names quickly. Be sure to choose an ILADS lyme specialist (International Lyme and Associated Diseases Society). They are cutting edge. Everyone else is clueless about lyme (they simply aren't educated enough on the subject).
The lyme specialists are often booked solid for months, so ask to be put on their cancellation list. I did this and was able to be seen in 3 days. Seriously, try this with several docs and take whoever gets an opening (cancellation). Although I didn't end up with my first doc, he helped me. Your husband really needs an ILADS specialist.
Yahoo has support groups on line, as well as groups that meet in person. Google yahoo, lyme.
Did his rhumatologist put him on probiotics? He should start taking them right away. My first lyme doc put me on 36 billion and it wasn't enough. I should have been put on 100 billion, minimum. I slowly worked up to 400. Also, your husband's doc should have put him on s. boulardii.
When did his symptoms start, or when was he bit?
-------------------- --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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Your husband needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non Lyme-literate doctors have no clue about this horrible disease or its complex treatment.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you a private message with the name of a lyme doctor and my experience getting rid of C Diff recently.
The main thing is that there isn't anything to worry about regarding the lyme. It takes a long time to get rid of lyme if you have had it for at least a year. The C diff meds treat lyme. And, lyme is a slow grower, so a few months will not make the lyme significantly worse.
You can go to the lyme support groups in your area to talk in person with others affected by this disease. See Support Groups on left side of page. Some groups are very negative, according to my lyme doctor. So, you want to find one that isn't.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you all for your responses and help. At least now we feel like we have a few more answers! To Catgirl, I'm not sure when he got it.
My guess is around November, because that's when he started having symptoms. His symptoms were painful joints, water on knee, fatigue.
Posts: 4 | From Northern VA | Registered: Mar 2013
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posted
Is your rheumatologist an LLMD? I see you are in northern virginia. My son's rheumatologist is an excellent LLMD. And her office always calls back, even after hours, if there is an emergency, like going to the hospital for something.
As for support, check out the National Capital Lyme Disease Association. They were instrumental in getting the new law passed in Virginia, and they have support groups.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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