I have been doing much bette (on orals only), but had a big backslide. I am wondering if the new oral abx will work as well as IV. It seems there is a shift away from IV recently.

What are the reasons for this and are people on here getting better with orals only?

Thanks
 

therse a shift away from it because people ( many) are getting better on just orals.

I didnt do IV. Im 90 percent better. I'm not saying I NEVER would. Heck, if I backslid that much, I just might.

Its a tough call. Only you can tell you what is right for you.
 

In the end (or what I sincerely am hoping is the end), my experience matched three theories that have been discussed a lot on Lymenet over the past year. Remember, this is a non-scientist's simple take on the whole thing.

First, there's a theory that co-infections block Lyme treatment, and that you have to be rid of them before bothering with Lyme.

Second, a lot of people subscribe to the idea that Lyme can protect itself by changing its form, turning into a cyst or floating around without a cell wall, the main target of drugs like rocephin.

Third, there was much talk for a while of how rocephin, and all the drugs in its class, cannot sufficiently penetrate the blood brain barrier to eradicate neuro Lyme.

So people have experimented with antibiotic herbs that have a low molecular weight, like garlic and smilax, that cross the BBB; antibiotic combinations that claim to hit the three Lyme forms simultaneously; and some pretty darn powerful co-infection drugs.

For me, doing all three approaches has brought the best results so far. Hopefully, others will share their experiences on this.
 

I do know that in my case- I was treated 1 month after bite with no chance that I had Lyme previously ( living in city in Australia and no symptoms at all)

After 5 months of Doxy and 1 month of Amoxy- I feel that I have as full blown a case as I did when I started

I did get progressively better with slight flares until the Amoxy

I take heart from what I learn here- and especially Liz from your recent postings

could you tell me who you are seeing? I have recently contacted Columbia but have not heard anything back

the further I get into this disease the more shocked I am that it isn't front page news!!

thanks Sarah

then DR E in New Jersey early May
then DR H in NY early June

Trying to get to see Dr B but I have no primary care physician- and he requires one that will consent to cooperate

didn't have a dr here when I was bitten as I had just arrived in the country-

have been seeing Dr C in NY state but need more opinions I believe-

perhaps if anyone has either a good GP that will work with Dr B...?

Or another recommendation of a fantastic dr?

I know that I am supposed to be patient-
thanks for your patience with me while I loose it...

green poo enough to send anyone to the looney bin even if it IS not a worry...

cheers friends-Sarah

I'm a little nervous about giving out this doctor's name until we've gotten to know each other better. He's not actually an LLMD. But if he says it's okay, then sure.

However, Janet Thomas' NJ LLMD has a good reputation, and there's another guy named Dr. E who specializes in bartonella, but who also prescribes for Lyme.

Before you make a decision, it might be useful to figure out which antibiotics you are going to ask for, then call and see how the doctor responds. I got the best responses from doctors who treat children (and can't risk the wrath of angry parents), doctors who cost a fortune (since their patients may not be able to afford them for long), and urban doctors whose reputations are often bound up with major hospitals in the area.

 

I tried to get my HMO to pay for my Lyme treatment. So my PCP faxed my CDC positive Western Blot to the infectious disease (IDiot) doctor in the network supposed to be knowledgeable about Lyme. The ID(iot) doc phoned my PCP and told him I did not have Lyme and that the antibody bands were from mouth spirochetes. Thus, insurance didn't have to pay. How convenient. So maybe don't expect too much from the ID doc.

Dr H in NY and Dr E in NJ were two of those recommended to me. I went to Dr. G in NJ
because 1)we're are the same sex 2)earlier appt and reasonable fee 3)also recommemded.

I would recommend Dr G in NJ.
 

For what it's worth...."doctor hopping" will slow you down, as will 95% of ID ducks!

------------------
oops!
Lymetutu

 

I hope to be able to say that I was treated with success and only with orals- in the near future!

thanks for advice re ID doctor- I may pay out of pocket and not claim to avoid any issues

In regards to your doctor Liz, if there is an issue with not wanting to attract the attention of insurers- I can pay and not claim through insurance

My lack of patience is in reaction to the fact that I am 37 and wed this year and we are both want to start a family. Actually was bitten 2 weeks before first IVF appointment! Obviously on hold for now-

Thanks for all of your help-

Sarah

I think we are all a little better but I worry about my husband and my son...but we are all getting slowly better.

Linda
 

I've been abx free for over 5 months now and doing great.

Could you 'backslide' be yeast-related?

------------------
Julie G.
___________
lymeinhell
 

Although I am still battling this disease and have had 2 rounds of IV Rocephin, I would never have been able to afford my treatment if it were not for the expertise my IDMD. IV got me to a place that orals couldn't - walking.

Do your homework before you discount any MD. There are non-LLMDs who are successfully treating LD. The ILADS Guidelines are not exclusive to LLMDs. If you look at the publishers, you will notice that some of the MDs listed are Infectious Disease MDs.

Go with whomever will treat you the way YOU want to be treated.

Good luck in your journey.

Bc
 

I only answered again this time because the posters above don't seem to have given enough credit to the idea of different strokes for different folks. Some people need IV, others have managed to get by on orals alone. Be very cautious about people who generalize from their case alone to all others. They are undoubtedly correct about their own situation.

One reason for the shift away from IV is that it is very expensive, requires invasive ports, and most insurance companies don't want to pay. So, docs try very hard to find orals that will work instead. There are also some very advanced cases that require IV and nothing else will do.
 

I have done only orals.
My LLMD never thought it was necessary even thoght I kept asking.
I think orals are for those who are very, but very bad....

 

IV has risks. People die from infected catheters.

Orals are safer.

Some people need IV (like me!) but orals can work for many people- sometimes it takes time to see an effect or to get the right combination-