posted
Our Doc wants to put my wife on Ceftin (Cefuroxime) 1000mg twice per day. This is after about 5 months of 500mg each day of Tindamax (Tinidazole).
The progress has been minimal as far as symptoms go. She eats very little sugar, speed walks 3-4 times per week (energy permitting), uses a far infared sauna 3-4 times per week and pretty much eats all organic foods.
She did test Iegenx positive but not CDC positive for chronic Lyme. Our Doc likes to use the CD57 test as sort of a gauge of progress. Here are the results for the Abs. Cd8-CD57+ Lymphs: 8/27/07 - 112 /uL 1/29/08 - 132 /uL - Tindamax was started at this point. 4/8/08 - 161 /uL 6/27/08 - 182 /uL - Looking good or so it appears. Symptoms still not really better. 8/27/08 - 144 /uL
A 38 point drop in the last 2 months while on Tindamax. That's not the direction we want to see this thing going.
I've also got the book by Bryan Rosner "The Top 10 treatments for Lyme disease" and Ceftin is on the "Worst Choice" list according to the book. The logic of the book on why it is not a good choice makes sense when you read it but I'm no expert on what he is talking about and it's hard to find factual information out there on this stuff (lyme).
I have a couple of questions:
1) What has really worked for anyone? 2) Does anyone else use the CD57 as a reference? If so, how has yours tracked thru treatment? 3) Is the CD57 drop an indication that the Tindamax ceased to be effective and it's time to change things up?
I have asked all these things with our Doc yesterday but I want to hear other opinions.
Thanks for all input.
Jason in GA
-------------------- Here for my wife who was diagnosed with Lyme in the Fall of 2007. Diagnosed after numerous visits to the dr and a Igenex positive test for chronic Lyme. Posts: 34 | From North Georgia | Registered: Jan 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Antibiotics, herbs, detox, exercise has worked for me.
My LLMD does not use the CD57, he says it can be high and the person can still be sick, or it can be low and the person feel well. He goes by symptoms once the testing was positive.
What else is she doing besides the sauna for detox? Any toxin binders?
Saunas are great and I used one daily for over a year (now I've gotten too busy to use it that often since I'm feeling so much better), but they can make the borrelia go to the cyst form. I took GSE to gently counteract that .... also Plaquenil.
Tindamax was too tough of a drug for me. We ended up stopping it.
I took antibiotic combinations rather than just one abx. That worked for me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by sixgoofykids: Antibiotics, herbs, detox, exercise has worked for me.
My LLMD does not use the CD57, he says it can be high and the person can still be sick, or it can be low and the person feel well. He goes by symptoms once the testing was positive.
What else is she doing besides the sauna for detox? Any toxin binders?
Saunas are great and I used one daily for over a year (now I've gotten too busy to use it that often since I'm feeling so much better), but they can make the borrelia go to the cyst form. I took GSE to gently counteract that .... also Plaquenil.
Tindamax was too tough of a drug for me. We ended up stopping it.
I took antibiotic combinations rather than just one abx. That worked for me.
Not sure about "Toxin Binders". I'll check that out. Thanks for you quick reply. Can you outline the exact protocol you did? What you took and when? How long from first starting to where you are today?
What is GSE?
Thanks for any help and hope you can provide me.
Jason
-------------------- Here for my wife who was diagnosed with Lyme in the Fall of 2007. Diagnosed after numerous visits to the dr and a Igenex positive test for chronic Lyme. Posts: 34 | From North Georgia | Registered: Jan 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sorry to hear that your wife is not better; you need to have her see a llmd.
To my understanding and knowledge, using Tindamax by itself as a first treatment for lyme is very unusual and seems ineffective.
Have you read Dr. B's guidelines? Usually, a cyst-buster like Tindamax or flagyl is used after or in conjunction with a core treatment protocol; such as a beta-lactam and macrolide, or IV rocephin, or another combination.
So, ceftin with tindamax with Tindamax sounds like an improvement over just tindamax. I am not a doctor and she needs an llmd to work with.
Never heard of anyone treating lyme with just a cyst-buster. I have not had my CD57 checked ever; my doctor monitors progress based on my clinical evaluation.
Best wishes for your wife. Hope you can find her a lyme literate doctor soon. You can post in the Seeking a Doctor section for referrals.
Posts: 2557 | From home | Registered: Aug 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Hi Jason,
I've been in treatment for 18 months and have been on several different protocols. It would be impossible to list them here, but typically I took babs meds (Malarone, Lariam, or Mepron), with a Macrolide and another abx (amoxy, cedax). That is how the combos were developed ... based on symptoms. I did take Tindamax for one week per month for four months. I also took Levaquin for bartonella.
It's a very personal thing to come up with a protocol and it needs constant review. Various drugs are appropriate at different times depending on symptoms. For example, Mepron is a great drug for me, I love it, but I know others who don't benefit from it at all. Same with Levaquin. We all hit our "miracle" combo by trying different things and addressing different issues along the way.
It's common to have symptoms get worse, then get better, then to get worse again. That's the time to change protocols.
But toxin binders are essential.
Burbur (www.nutramedix.com) takes the edge off a herx for me. If I'm feeling particularly toxic, an epsom salt bath seems to help more than a sauna because the sauna has the capacity to mobilize toxins.
GSE is grapefruit seed extract. It also helps with candida issues.
Sorry she feels so bad. I wish I could just say take this and she'll get better. Memorize the Dr. B guidelines, they are the best we have right now. I have read and reread and reread them. I cannot tell you anything better than what's in there. Hopefully as time goes on we'll get a more exact standard of care, but that's the best there is right now.
There are many herbs now to supplement treatment (Healing Lyme by Buhner and Cowden at Nutramedix). Those are new since the guidelines were written.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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