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Old 09-06-2006, 03:40 PM   #1
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Location: North Augusta South Carolina
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chimom2000 HB User
Questions about lyme disease. Due to get my labs next Tues



I have been reading these posts and see that it seems that everyone is on a different protocol of treatment for lyme disease. Dr J has me on Augmentin, Biaxin and Flagyl. I take the Augmentin and Biaxin three days a week for 3 weeks and add the flagyl the last three days of the 3rd week. Take the 4th week off and start all over. I am also on Jarro Dolphilus which is a probiotic along with 3 supplements. Is anyone else on this protocol?

How long have you all been being treated for lyme disease? How long do we have to stay on the antibiotics? Are we ever cured?

I am going downhill so rapidly that I can barely walk any longer. I spend about have my time in bed. I force myself up at varying intervals but it is getting harder and harder.

I hope that Dr J's liscense is reinstated after the stay as we are driving 3 hours to get to him now. Probably closer than many of you but down here in the south they say it is not possible to have lyme disease. I wonder though if we do not have lyme disease here then why do the vets preach so hard about protecting our animals against the disease. Isn't it the same tick?

Sorry for going on so long. Just nervous about the dr j thing.
Idelette

Last edited by chimom2000; 09-06-2006 at 03:40 PM.

 
Old 09-06-2006, 04:33 PM   #2
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Re: Questions about lyme disease. Due to get my labs next Tues

Hi Idelette. I am sorry you are are so sick. How long were you sick before getting diagnosed? How long have you been on treatment? Dr. J. is an excellent doctor, so I am sure you are in good hands. It is a shame what happened to him with his license. He is not the first doctor to go through this.

You are right that vets are usually more knowledgeable about tick-borne illnesses than doctors are!

It can be rough going through treatment, and it is normal to feel worse before feeling better. Are you familiar with the herx reaction? It can take time to recover, but with proper treatment you can get better.

It is important to learn as much as possible. I recommend reading "Everything
You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and Dr. Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many doctors follow his protocols.

Hang in there okay?

 
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Old 09-06-2006, 05:04 PM   #3
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Location: North Carolina
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Re: Questions about lyme disease. Due to get my labs next Tues

Idelette
I also go to the J Clinic. Just went yesterday. It is a shame what the Medical Board has done to him. I hope that will change soon. I just read on a post (not on here) that someone had e-mailed CDC and ask when they would be changing their guidelines on lyme. They had gotten a responce to the e-mail that a decision would be around the first of Oct. I had read a news bulletin that several LLMD's from ILADS had met with the top CDC in June about reviseing their guidelines. Maybe they will be doing that.

Also I wanted to note that I was on amoxicillin and septra with a flagyl pulse at the end of two weeks. I did that for weeks. Then while on drug holiday, I was bitten by a cat and ended up being changed to augumentin by my family dr. I had a big herx from the augumentin. Yesterday when I was seeing Christie I told her that augumentin worked better. So after this next round of meds I rotate back to augumentin. So, yes to answer your question. Augumentin did work for me. Septra is in the same family as Biaxin and that one I was on with the amoxicillin.

Every case is different, I hope it helps yours too. Remember to detox. (we discussed that yesterday) Dry skin brush. I had some pretty bad herxs. But overall, I am some better. Hang in there. You will see an improvement but for awhile it might seem your are going backwards not forwards.

If I can help, I'm here. It does help to know that there are others that understand.

Prayers....Marsha (from NC and in treatment since last oct)

 
Old 09-06-2006, 07:51 PM   #4
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Re: Questions about lyme disease. Due to get my labs next Tues

Idelette
Sorry to hear you are so sick. I also see Dr J. Have been going for two years and have been pulsing on and off various orals the whole time. I have not been on augumentin, but have had the Bioxin and Flagyl. (also had Septra, Levequin, Ktek, minocycline, doxy...etc) I get slightly different reactions with each cycle. I herx at the beginning of each cycle, but it was much worse in the beginning than it is now. I spent the first two months in bed, my joint pain was severe and I could not walk. Then I walked with a walker for about a month. Then I had physical therapy and walked with a cane for awhile. Now, I'm almost running! I can even climb stairs. I rarely have joint pain, except when it rains. Right now my biggest challenge is fatigue. (and of course the herxing..which for me is kind of like getting the flu for a few days every couple of months)

So, yes, it does get better. It just takes time. I'm still getting better. Sometimes it's like two steps forward, one step back.You are in great hands with Dr J. I too am nervous about the current situation. But I know Dr J will do all he can to treat us the best he can. Hang in there.

 
Old 09-07-2006, 02:07 PM   #5
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Location: North Augusta South Carolina
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chimom2000 HB User
Re: Questions about lyme disease. Due to get my labs next Tues

I have only been with Dr J since last month. I really lucked out. I called them expecting to have to wait a least 3 -5 months for an appointment. But had one in less than a week. And with Dr J himself. Not one of the others. When I went it was Aug 3rd. My insurance paid for all my labs. (BCBS of SC)
He gave me scripts for the three antibiotiocs and suggested several good supplements. My insurance again paid for all my scripts.
I can not help but think that is a good sign that he was able to write my scripts etc since his liscense was suspended in June. At least that is what the press release says. Anyway, I will find out more and post it next tues when I get back from my visit with him. Well I will probably wait till Wed to post since it is a good drive back. I am sure I will be wiped out.

Thanks for your responses.

 
Old 09-07-2006, 02:54 PM   #6
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Join Date: Aug 2005
Location: North Carolina
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Re: Questions about lyme disease. Due to get my labs next Tues

Chimom
Dr J's license was suspended with a stay. Which means under the conditions the medical board placed on him, he can treat lyme.

I did receive a letter today, his practice is now Jemsek Speciality Clinic. He is very supportive with all us and wants to help in any way he can. As of Oct 1, he will be no longer accepting insurance. His office will expect payment with the visit, but is willing to file the insurance. He also is willing to help us if we need to apply for medical assistance. There is a program. I'm sure you will get the letter. I won't go into detail. If you don't get it in a few days, call them and ask them to send you one.

He is dedicated to finding help for all of us with chronic lyme. He helped paved the way for Hiv/Aids 20 yrs ago and I know he will do the same for lyme. I'm glad he is on our side. I think he is a fighter. He has to be to fight the system the way he has.

I think we need to keep him and his staff in our prayers.

Prayers...Marsha

 
Old 09-22-2006, 10:48 AM   #7
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Re: Questions about lyme disease. Due to get my labs next Tues

Hi chimon,

How much Augmentin are you taking a day?

 
Old 09-22-2006, 08:26 PM   #8
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Location: North Carolina
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Pearlscale HB User
Re: Questions about lyme disease. Due to get my labs next Tues

Augmentin....Amoxicillin 875 & Clavulanate potassium 125. RX bottle reads amox/clav 875/125. I took it for 3 wks twice a day. Alot of herxing. Two weeks off. Now finishing levaquin & Mino (add flagyl last three days) with another two wks off. Then back to Augmentin for 2 wks.
Prayers....Marsha

Last edited by Pearlscale; 09-22-2006 at 08:32 PM.

 
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amoxicillin, augmentin, biaxin, flagyl, levaquin, minocycline, potassium, septra



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