My question is this

We are pretty sure I contacted Lyme in 2001 (personally I think much later, in the 90's, but he thinks otherwise).

He has me on all the right medication and supplements. He really seems like he knows what he is doing.

He thinks I have babs and bart.

I have been on medication since January (Biaxin and Minocyclin, then Zith and Levaquin and now Ketek - in addition to supplements, probiotics, Nystatin, Cat's Claw and Artemesinin).

He thinks most of my Lyme should be gone by now. I am on Ketek for 2 more months and then that's it for antibiotics.

5-6 months of antibiotics.

All my research I have done says you should be on them longer. Am I wrong?

He has had Lyme and said that a few months of ABX cured him and he has had no symptoms so far.

And you had this a minimum of 4 yrs with no abx? Doesn't add up in my book.

Babs alone can take a year or more to clear....same with bart. I don't see where you've even had the meds for bart or babs...???

I know you are really fond of him & probably feel darn lucky to have him now.

But what are all the other LLMD's saying with regard to length of treatment?

I mean - if you STILL have symptoms after the antibiotics - then what?

I would think if LD is supposed to be primarily a clinical diagnosis - that treatment should be extended until the clinical picture is better - don't you?

Do your research & take it to him (in the wise way you know how...).

Lyme treatment - from my limited understanding - is supposed to be individualized - isn't it? If not, we'd have a national standard protocol by now.

We ain't got that yet.

You're an individual - make him treat you like one & not like a clone of his happy a**.

xoxo

We've had major, major improvements over the year, but I still have herxheimer reactions, particularly since I added in the tindamax to treat the cyst form. Which I hope, hope, hope is the final step for us...

Yeah, I know all about Dr S in Chadds Ford. My first visit he said I should never expect to test positive and gave me 250 mg of Zith every day for 6 wks. Saw me again and put me on 250mg of Zith every other day for 6 wks. And then told me that he would not treat me until I did test positive. ?????? And I kept asking him, do you think I have Lyme and he would say, 'maybe'. ??????

The way he portrayed his treatment at our very first visit was totally opposite of how he ended up treating me. I was so confused and frustrated with him.

I am seeing another doctor in DC now.

Sad thing is, it almost takes me as long to go to this doc in DC than it did to see Dr. S in PA!

The doc I am seeing now said that he would not stop ABX until after symptoms stopped. He really thinks 4-6 months will get rid of the Lyme, Babs and Bart.

I am worried it will put the Lyme into hiding (suppress it - if that is the right word) and when it resurfaces, it will be even worse than it is now.

Nothing personal as he is a wonderful man, but I, too believe he took me off abx way too early and know of a few others that he has done this too.

Not sure if he or we are right (and know my grammar is not, lol).

Did your Lyme symptoms come back (I assume they did)?

It sucks cause he is a great guy. And so far diagnosing me and treating me is basically by the book. It is just the length of treatment that is the problem...

I really thought this LLMD was the one for me.

I would hate to have to pay out of pocket for another outrageous initial consultation fee and testing with another LLMD. And just going through the whole process of finding one, meeting one, etc, will be so frustrating.

I came on here to update you on how my visit with Dr. S went, when I came across your post.

I can tell you that I have a very similar take on the advice I was given. I found the doctor to be very likable and he did 'know his stuff', but he also insisted that 1-3 months of treatment for babesia, and 1-3 months of IV treatment for the lyme will "have me feeling fine." I asked him what would happen if I wasn't well, or if I relapsed and he said that relapse very rarely happens, and left it at that. I can tell you that he was also very keen that I nurse the baby I am currently carrying for 6 months, although I have heard quite the contrary on lymenet and from Dr. Jones' office.

Rene

Good to know Rene. I will take you and Dr WA's advice. I hope it works cause I really like this LLMD.

But, I mentioned that I still had alot of stiffness that was very painful (something I've always had since the very beginning of symptoms - legs, back, arms, neck, feet, hands, etc) and he said that it could not be Lyme, as I had been treated enough. It must be my weight. ?!?!?!?!?!?!?!?!?!

Don't get me wrong, I know I need to lose weight but it just seemed an odd answer - especially when the stiffness is everywhere - not just my legs. It hurts as much to bend my knees as it does to lift my arms high enough to take off my bra or to open my hands.....it's all the same exact pain.

And 3 months treatment of ABX should have cleared out my Lyme?

quote:

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Originally posted by sarabear:
I still have 5 months to go before I can start my treatment so in the meantime I'll have to live vicariously through you. hahaha.

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Sara, you're not on amoxy??

I agree with Rene you must tell him what you think. This is a team effort and you know your body. That being said if he does not continue treatment then I would find another LLMD...

I just know so many that have been in long term treatment with him and it shocks me to hear otherwise. Even when my friend thought he was ready to stop meds Dr. S told him he needed another two months just to be sure. My friend is doing great to this day and quit all meds 10 or 11 months ago. Good luck and I hope things work out soon.

BRAIN 1 YEAR
BLOOD 4 MONTHS
SKELETON 3 MONTHS
DNA 2 MONTHS
LIVER 6 WEEKS
SKIN 4 WEEKS
STOMACH LINING 5 DAYS
TASTE BUDS 6 DAYS

So going with that theory spirochetes cant hide forever.

I went the last time for treatment 14 months straight no breaks. I have been off abx since sept 27th 04 sofar so good.

Everyone here needs to understand that the disease works differently in each person because of there make up and Time infected ,strain or strains of Bb, coinfections and overall health to begin with.

If I were you I would insist on treatment until all symptoms were gone then I would go 2 to 4 months more also taking flagyl at the same time.

Well, we were both right. I had developed systemic candida from the abx, which needed to be cleared up. But, I also relapsed and was having what seemed like Babs symptoms. My MD admitted me to hopsital for testing to rule out every other possibility and to get me on a nutritional IV because I was pretty darn sick.

After a few trips to the hospital with "mysterious" symptoms (as ER MDs called them), my MD and I decided that infact I still had Lyme and certainly had Babs. I started over with my treatment, after I cleared the candida. 13 months later my MD is saying I need to keep going with abx and thinks I lost ground when off treatment. He does not take an omnipotent viewpoint on this.

I think sometimes, it is a trial and error with Lyme treatment. You may well be better after 5 months of treatment, many are. But, be aware that if you stop treatment and relpase you will lose some of the benefit of the first round of abx.

Please discuss this with your LLMD. Sounds like he will listen. Afterall, you pay the bill.

Good Luck

oh I'm on amoxy alright! 4500 mg/day, but it sure isn't treating me! With the babs, the amoxy isn't makign a dent in my symptoms so I'll have to wait until the baby is born to begin the mepron/zithro. After that, apparently I'm supposed to be on IV for a little while for the lyme. Then maybe I'll start feeling better.

Sara

No, I have never been tested for the co-infections. My LLMD just says that my symptoms and the time of the symptoms match Babs and Bart.

I have never been positive for Lyme - even with Igenex.

The meds went like this: Biaxin and Minocyclin, then Zith and Levaquin and now Ketek.

I believe the Biaxin and Mino were for Babs - and the Zith and Levaquin for Bart.

He said he is going to take me off of Ketek in 2 months. At that time, it will end up being 5 months (maybe a little less) that I will have been on ABX.