posted
My Lyme friendly internal med doc told me yesterday that the reason she only had me on 200Mg for initial treatment was because she had gone to a conference that taught it was best to "go low, go slow"
She said higher doses produce worse Herx so it was better to start on a low dose?
She also believes since I had no IgG bands and only 2 IgM bands that my infection is more recent, not chronic.
She is re-doing my blood work to see what it shows now. I just finished the antibiotics yesterday.
I asked her shouldn't I be off the abx for a while before doing the test? She said it didn't matter. I thought I had read differently.
Doe this all sound right?
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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posted
Yes, there are times when an initial dose is smaller at first to keep you from tough herxing.
Sometimes being on antibiotics before testing "teases" the infection out and you will get a stronger lab result. That is what we were told when my daughter was first getting diagnosed.
Posts: 177 | From God's Grace | Registered: Apr 2007
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Yes, the "go low, go slow" approach is what was used with me. We may be going to the same person.
Please look for a PM from me.
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
The go low, go slow approach can work work if you go long enough. It can takes years of treatment. I do know those that have completely recovered by this method.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My LLMD doesn't use it ... but I have heard of it.
She is not right about the IgM indicating more recent infection. That's where borrelia is different ... it always seems more recent with testing, but many long-term chronic Lymies only show IgM and no IgG. In fact, when my LLMD who has been treating Lyme for 20 years or more saw my positive IgG, he told me it was unusual.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
As sixgoofy said, your Lyme-friendly physician is not fully informed about the IgM and IgG antibodies in relation to chronic Lyme.
This thread is very helpful in understanding the issue, and is very informative about testing in general:
I am on the low and slow protocol, since I herxed so strongly to very small doses of antibiotics. I am finally up to half the required doseage of my current med, and it is still working, and causing herxes.
I think it completely depends on the patient, the meds used, and the infections present, among other things. One concern is of course causing the Lyme to become resistant to the med in question. So if you start to plateau or don't see any herxing or small improvements, my LLMD switches to a new med.
posted
I think that TxLymie & I go to the same doctor, possibly. She is more knowledgeable than she is given credit for, in my opinion. Every patient is different and will present with MANY different health issues that complicate the whole picture.
If this is the same doctor, I will say this: She is open to other doctors' opinions, alternative approaches, etc. Not a lot of doctors are like that, I have found. Lyme & co-infections combined with so many other health problems create different problems on a daily basis for all of us.
I know a lot of people who go to her, and she truly has your best interest at heart. If something is out of her realm, she will refer you out to another doctor............no problem.
She confers with multiple LLMDs, and has no problem with you going to one. She's a great doctor who remains OPEN to any possible treatment, but makes sure it is right for YOU.
As far as the IgG vs. IgM issue, I've read too much about it and haven't really formed my own opinion on it. I'm not a doctor, but it makes sense both ways. (I've read Dr. C's Western Blot Explanation many times...........)
I've had and have both IgG and IgM bands show up and I feel the same way health-wise, no matter what my labs say! So many health issues probably have something to do with how I feel overall anyway. I don't know.
I'll be quiet now............don't anyone jump on me about the IgG and IgM issue, please. Lyme is controversial enough without adding more things to go back and forth about.
I'm in a funky mood today, so I apologize if this post is weird in any way. I just know that this particular doctor has helped me tremendously, along with the help of other doctors ------ all working in harmony.
Just had to put in my 2 cents worth............
Take care, Same ol' terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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Thanks, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I've been on low dose abx for over a year now (mono-therapy) and I've gotten a LOT better. I still have symptoms, the disease is still very much active..but I'm way more functional. And I've had Lyme for most my life.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I think it can really vary for people. I did the slow and steady deal for four years and just got worse, and worse, and worse.
Then I saw a very aggressive LLD and got better for the first time in four years. Same with my husband.
I believe her when she said you have to treat Lyme and all co's at the same time in order to eradicate them, as well as all three forms of Lyme.
However slow and steady seems to have helped others. I bet it depends on the nature and severity of our infections, and things we may not even know about yet.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I haven't been to an LLMD yet but so far I am not feeling like I need to go that route just yet
Anyway, when I went in, she listened, answered every question I had and also ordered every single test I requested. Even an MR brain scan just to check to see if all was ok.
I don't have a lot of neuro issues but I am curious if I have lesions like so many here do. I just want to know.
She is working it so my insurance should cover it all. I am new into this so I guess time will tell.
I do NOT believe that I was recently bitten. At first I thought I could have had this 10 yrs...but I also have Chronic Mono which could cause the fatigue.This seems to flare up anytime I have a lot of stress.
I've also had hair loss for 8-10 yrs and have been tested for thyroid issues but she is doing a more extensive test so maybe the hair loss was from that and not Lyme??
It's hard to say whether I am chronic or not. I am tending to believe she may be right (not chronic) since I have had fatigue for 10 years but I have really lived a very normal life other than that. And if I had it 10 yrs wouldn't I be much worse by now?
My other symptoms began more in the past 6 months. Mostly chest pains and a pain in my left eye and various other sporadic pains.
So I don't think I have only had this a few months but it is possible I've only had 6-7 months...would that be considered chronic?
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
tutu wrote: She's wrong about not going off abx for the test.
Seems like this may be personal preference. My ILADS LLMD is an expert in testing issues which is one reason that I picked him and he had me stay on abx for IgeneX testing.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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My WB was very positive IgM, yet I've had symptoms for about 30 years now.
I maintained fairly well, until I had a baby almost eight years ago.
Then I had major surgery at the end of 2007 and have gone downhill very quickly since then.
My symptoms have become severe in the past eight months or so, for no obvious reason.
Btw, my LLMD is great - he's in Denton.
He no longer takes insurance, though.
PM me if you decide you want his name.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Shosty
Unregistered
posted
I tested fully CDC positive only after being on abx for a few weeks.
Our family all had IgG bands but had not been recently bitten.
Treating "low and slow" makes sense while first taking meds for a chronic infection (although the dose can be ramped up over time), but for a recent infection, a "low and slow" protocol will only temporarily suppress the infection, and make it come out later even more strongly- in my opinion anyway.
I think it would be safest to treat aggressively for 4-6 weeks if there is any chance at all that you were recently bitten. According to your ability to tolerate.
Theoretically, if you have a big "herx", as they say, you could assume that the abx are stirring up bugs that have been deeply hiding over a long period of time, rather than just killing bugs that have arrived more recently. But even this would perhaps vary with the individual and the timing of the bacteria's movement in your body.
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posted
My daughter's extremely well-respected LLMD re-tested her while she was taking abx. It had more positive bands than her first test and was CDC positive.
Posts: 984 | From US | Registered: Dec 2007
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Shosty, My doctor did say it was fine to test while on abx. I just thought I had read otherwise. Glad to know that is ok. Actually I am off the abx temporarily but that is only because she wants to see what the tests say and then she will decide on the next round of treatment.
I gotta say I am happy to be off of them. Even though it was only 6 weeks, I didn't feel very good when taking them. I seem to feel better now.....but we will see how long that lasts.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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