I've gathered a tremendous amount of information from this board and just want to post an update on my husband so hopefully it can help others in a small way.
We're going to get a second opinion from another LLMD because we're not comfortable with the way treatment is progressing (or not progressing). My husband saw an LLMD back in May 2008.
From May 2008 until around mid-August 2008 he was on 400 mg of doxy. He continued to have ups and downs with his symptoms - fatigue, chills, mind haze, gastro-intestinal issues, and severe joint pain. We didn't see any real progress.
In mid-August the doctor dropped him down to 100 mg of doxy three times a week (MWF). We still have no idea the point of taking such a low dose. The doctor dropped the doxy to focus on treating the yeast.
My husband did sulfoxime IV treatments for the yeast, which worked really well. I haven't found a lot of information about sulfoxime and was skeptical at first, but it did wonders. My husband had been on diflucan, but it really did nothing for his yeast.
His symptoms gradually worsened being off antibiotics and the doctor started different antibiotics the beginning of November. He was put on vancomycin (pill - not IV). He improved a little for a couple of weeks and then started slipping back. The doctor kept him on the oral vanco and added Ketek. He tolerated the Ketek for a couple of weeks and then started having mental problems.
He went off the Ketek, stayed on the vanco and plaquinel was added the end of December. My husband continued to show no real progress. He just started on Ceftin last week, so we're waiting to see how he does with that.
We also think something needs to be added for the Babesia (his primary symptoms fall under Lyme and Babesia). I know Plaquenil is used for Babesia, but he hasn't responded to that at all (he continues to have shortness of breath, etc.).
Our current doctor doesn't seem focused on the lyme/babesia and antibiotic treatment. Every time we go in there's something new brought up. The last straw, so to speak, was bringing up dna/genetic testing issues (we didn't even realize she was doing these tests as a part of his blood work).
We want to stay focused on his main symptoms and be more aggressive with the antibiotics and do lyme/babesia combinations.
In addition, the amount of supplements has become overwhelming. We believe in supplements, but again, want the focus to be on antibiotics.
My husband has shown short term improvement with antibiotics, so we're confident he can get better with the right combination.
As a final note, we're very thankful that my husband's employer has been understanding and flexible. They changed his status to allow him to work from home full time, which is a big help.
That's all for now. Thanks again for everyone's support.
SMJKOJ
Posts: 26 | From Virginia | Registered: Apr 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
What has your LLMD said about why she thinks he hasn't progressed?
I think dealing with the yeast issue before giving too many abx was a very important step! She was likely giving the abx at low doses to keep lyme at bay while getting rid of the yeast issue.
Sometimes it is a matter of finding which abx works best and that can take trials with different abx.
The shortness of breath (really air hunger) for me is related to die off. Acetylcholine improves that a great deal. I also have babesia. I can't say if that is your husband's problem but seems likely to me. Read all of my posts in this thread about that. http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/71942?
If your LLMD thinks the lack of improvement is due to an inability to detox, then her recommendation for genetic testing makes perfect sense.
As one who has several genetic issues with detox, I found much improvement in dealing with those while at the same time treating TBI's. Without treating the genetic/detox issues, I"m sure I'd still be very ill regardless of TBI treatment.
Research the genetic detox issues more in order to fully understand the implications. Look into methylation issues, biotoxins etc.. Lots of posts on this forum about those issues.
Never hurts to get a second opinion but your current doctor sounds very good to me.
It took several years of aggressive treatment and looking at all of the issues that can hold up improvement before I started to see real improvements.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
bettyg
Unregistered
posted
sm,
thanks for update on hubby! i was surprised too that dr. dropped doxy down vs. keepign it up there, etc.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic