posted
I had my three month appointment with him yesterday. I have to say all my doubts/worries have been put ot rest regarding his protocol. I trust him.
He does not address co-infects directly but his protocol does hit erch.,and I think bart.
He does not test for babs.
He does not think there is any scientific proof that co-infects are why chronic lyme patients are not getting better.
I am not sure what I believe. All i know is that I am improving on tetra. For the first time in 4 years I have had more good days than bad.
I am going to ask my other ID doctor (at Mass General - not a LLMD) if she will test me for babs. She already tested me for erch. and I was neg.
He did answer these questions - thought I would share the info:
Yes Tetracycline makes you gaine weight but Bia/Plaq does not.
My elevated ANA will go down as I continue to improve.
I can't take levohydracin long term, very bad for you to take it for more that 2 weeks.
He thinks this will take 18 months of abx to resolve. He will rotate me between tetra or biax/plaq.
He does not think IV Rocephin is usefull.
My racing heart is due to irratation of nerves leading to heart - he thinks the heart muscle itself is fine.
He would like me to try excersising.
He thinks that if I could tolerate Tetra then bia/plaq will be easy (I am refereing to stomache issues).
He also mentioned that a sign that the tetra is working is when it is no longer is causing nausea. This took about 10-11 weeks for me.
And the best part - he thinks I am improving. He even said that although I can expect some more bumps in the road, especially around my period and ovulation, that the worse days are behind me. I startied crying. How I want to believe in those words!
Thats all I can remember. Just thought I'd share.
Lori
Posts: 58 | From boston | Registered: Apr 2006
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posted
Thank you for posting this. We started treatment a month ago and your words are encouraging to hear.
Posts: 115 | From USA | Registered: May 2006
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posted
You are welcome. Sorry for the terrible spelling!
I am bumping this up again because I know some folks had questions about Dr. D and I wanted to make sure they see this.
Posts: 58 | From boston | Registered: Apr 2006
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posted
Thanks for posting that, Lori. Could you email me Dr. D's email - he was going to oversee ( by phone and email) my treatment four years ago - but then my doctor left, then Dr. D left BMC - the only contact I had. Think it's time to try again, tho the new doc I have looks doubtful. many many thanks dharma
Posts: 731 | From NH | Registered: Jan 2002
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posted
I also had my appt with Dr. D the same day as you and I felt more confident when I left.
Biaxin and Plaq were harder on my stomach then the tetra seemed to be. He switched me to Biaxin XL and I take both of them at dinner time.
I had weight gain as well with the Tetra and hope it goes away with the Biaxin and Plaq.
I would be interested in who you are seeing at Mass General and her position on chronic lyme. You may PM that info to me.
My only complaint is that it is so hard to get in touch with him and I totally forgot to talk to him about that.
Posts: 441 | From USA | Registered: Jul 2004
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posted
For those that actually see Dr D still, does he Rx both Biaxin Xl and the regular Biaxin? Does he think that one works better than the other? What does he think about balancing PH? Does he think that it's necessary? Thanks.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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posted
Testing for Babs - Just a reminder about testing for any of the Tick-Borne Diseases (Lyme, Ehrlichiosis, Babesiosis, Bartonella, etc).
A negative test result should not be used to "rule-out" the disease. Tests are not 100% reliable & too many factors can cause a "false negative" result.
Babesiosis is a good example.
www.ilads.org/burrascano_0905.html page 22 under "Diagnostic Tests," says: "...There are at least thirteen, and possibly as many as two dozen Babesia forms found in ticks, yet we can currently only test for B.microti and WA-1 with our serologic and nuclear tests....Be prepared to treat based on clinical presentation, even with negative tests."
Also, the lab used is extremely important!! Tests should be done by a lab that specializes in Lyme & other Co-Infections.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Does anyone know for sure which co-infects are not touched by tetracycline and/or bia/plaq?
Posts: 58 | From boston | Registered: Apr 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by badtick33: Does anyone know for sure which co-infects are not touched by tetracycline and/or bia/plaq?
Big Bad Babs.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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quote: The regimes are confusing and it appears to be a crap shoot about what one works.
When all is said and done, I personally think it will all come down to what particular strain of Bb you have as to why one protocol works better than another... just my opinion.
Posts: 115 | From USA | Registered: May 2006
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posted
I too have great confidence in Dr. D. I am getting better on his protocol. I started with him Nov 04. So far I have done 6 months Tetra, 6 months P&B, 6 Months Tetra, now I'm on month 2 of P&B this time around.
Tabers, I got much worse around weeks 3 & 4 of tetra the first time. You are probably herxing. Getting worse is not necessarily a sign the drug is not working, it may be the opposite. Dr. D. told me not to judge a treatment until I have done it for 90 days.
I usually ate 20 minutes after tetra, any longer and the herxing was bad. I tended to feel worse the hour after taking tetra in the am. I think this was because it was killing lyme every day. I always took it with lots of water & stayed upright for an hour.
Plaquenil and Biaxin is easier for me. No stomach problems, less ups and downs. The first year I took it it made me very nauseous the first few days. That subsided and then my mood felt different while on it. I use brand name Biaxin. The generic did not work as well. I have not tried XL.
The second time around on each drug has been much easier for me. This makes me think the difficulties the first time around were caused by the Lyme & related die-off toxins, more than the drugs. I did feel much worse around the 30 day mark on P&B both years. Herxing no doubt.
I gained approx 1/2 lb a week on tetra. Ugh. Since going on P&B my weight has been exactly the same every day. No more weight gain or water weight fluctuations. I'm hoping I'll start losing weight soon.
I can do a lot of walking but other exercise only in small amounts. It wipes me out. It feels as if the exercise mobilizes the Lyme very quickly, the drugs kill it and I herx right away. I don't dare exercise on days I have something important to do.
Hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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quote: For those that actually see Dr D still, does he Rx both Biaxin Xl and the regular Biaxin?
Our pharmacy dispensed generic Clarithromycin, so I am assuming regular Biaxin was prescribed. Perhaps I should checkup on this.
Posts: 115 | From USA | Registered: May 2006
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I can do a lot of walking but other exercise only in small amounts. It wipes me out. It feels as if the exercise mobilizes the Lyme very quickly, the drugs kill it and I herx right away.
Hmmm. This actually makes some sense...need to keep an eye on this. Thanks for pointing it out.
I have a question for you...how long before there is improvement with the brain fog? I know each person reacts differently, but did one set of meds work better than the other in this regard?
Thanks.
Posts: 115 | From USA | Registered: May 2006
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posted
For me the brain fog started to go away within days of starting tetra. It would come back when I was tired, tried to do too much, was herxing. I typically got worse every 3-4 weeks. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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