Mommas with Lyme Disease <3 - Page 13

[gigismom]

thanks kathy, i don't remember if it is dr jones she mentioned. i will hopefully talk to her tomarrow and will find out then. i just wish i had or felt like i will eventually get a clear cut positive or negative on this. i have a feeling i won't though and that the results will just be up to interpretation and then we will have to decide how to proceed. i don't want to guess.

[kjbrown92]

I know how you feel. I'm going through it too. It's been a couple weeks since DS's blood draw, so I'm hoping when I go in for my appt today that he'll have DS's results. My doctor's theory is that I got lyme between DD1 and DS, and that's why DD1 is healthy and DS and DD2 have tons of food intolerances and gut problems. We'll see if that theory pans out.

[chlobo]

Honestly, I hope he's wrong. But I understand that then you'd have something to treat.

[kjbrown92]

DS has it. Found out today.
I also tested positive for Rocky Mountain Spotted Fever. How weird is that? I guess a tick must have gotten me at some point, eh?

[chlobo]

Originally Posted by kjbrown92

DS has it. Found out today.
I also tested positive for Rocky Mountain Spotted Fever. How weird is that? I guess a tick must have gotten me at some point, eh?

Oh dear. So what's his treatment plan?

And what is the treatment for RMSF?

[gigismom]

Kathy, so now what? Did you get a suggested treatment plan? This is something to treat so now you can feel empowered to continue to heal and improve.

[kjbrown92]

DS is on Minocycline for a month, with Cat's Claw, same as me. Except I've already been on the minocycline for a month, and I'm doing it for another month and adding Bactrim for the month as well. The doctor was happy that I was having Hx reactions. I'm hoping DS's aren't bad though. I don't want him to be miserable while he's still in school.

The doctor made it sound like I must have had Rocky Mountain Spotted Fever at some point, but from all the reading I did yesterday it sounds like it's an acute thing and then goes away. The only thing I can think of according to the symptoms is when I was 14!! My church youth group biked 10 miles to a park and were there all day. The next day I started to feel unwell. By Friday I had a temperature of 103 (the only fever I've ever had besides my constant 99 when I had mono in college) and was delirious. The doctor diagnosed a kidney infection and I was put on abx, and I was sick for about another week. I'm wondering if I had the RMSF then and also happened to have a UTI (my first) and the abx took care of it all. Of course if that's true, then have I had lyme since I was 14? That UTI is what started odd symptoms... I then had UTIs about 3-4 times a year until I was 20 (went on abx for a few months and broke the cycle). But it was odd because my symptom was always pain right in my diaphragm. They'd test, and I'd have a UTI. Then when the UTIs went away, I still kept getting this intense diaphragm pain and would vomit, etc. They said I had non-ulcer dyspepsia, or spastic stomach, or spastic color, pre-ulcers, etc. etc. no one had any answers, then they went away the summer I turned 21. I'm wondering if that was the cascade of lyme all along... in which case I need to test DD1 as well.

[chlobo]

Originally Posted by kjbrown92

DS is on Minocycline for a month, with Cat's Claw, same as me. Except I've already been on the minocycline for a month, and I'm doing it for another month and adding Bactrim for the month as well. The doctor was happy that I was having Hx reactions. I'm hoping DS's aren't bad though. I don't want him to be miserable while he's still in school.

The doctor made it sound like I must have had Rocky Mountain Spotted Fever at some point, but from all the reading I did yesterday it sounds like it's an acute thing and then goes away. The only thing I can think of according to the symptoms is when I was 14!! My church youth group biked 10 miles to a park and were there all day. The next day I started to feel unwell. By Friday I had a temperature of 103 (the only fever I've ever had besides my constant 99 when I had mono in college) and was delirious. The doctor diagnosed a kidney infection and I was put on abx, and I was sick for about another week. I'm wondering if I had the RMSF then and also happened to have a UTI (my first) and the abx took care of it all. Of course if that's true, then have I had lyme since I was 14? That UTI is what started odd symptoms... I then had UTIs about 3-4 times a year until I was 20 (went on abx for a few months and broke the cycle). But it was odd because my symptom was always pain right in my diaphragm. They'd test, and I'd have a UTI. Then when the UTIs went away, I still kept getting this intense diaphragm pain and would vomit, etc. They said I had non-ulcer dyspepsia, or spastic stomach, or spastic color, pre-ulcers, etc. etc. no one had any answers, then they went away the summer I turned 21. I'm wondering if that was the cascade of lyme all along... in which case I need to test DD1 as well.

Since the lyme test is an antibody test how does the doctor know when its "active lyme" vs. just having the antibodies b/c you had lyme? I'm not trying to be snarky, just trying to understand. With vaccine preventable diseases they use the antibody test to see whether you are still immune. So how does it work with lyme? How will he know when to stop treating?

[Panserbjorne]

already answered you, but in theory they're looking for antigens and antibodies. Antigens cause a disease and antibodies fight it. The presence of antibodies just tells you that the disease has been fought. The presence of antigens means there's something currently being fought.

[kjbrown92]

Originally Posted by chlobo

Since the lyme test is an antibody test how does the doctor know when its "active lyme" vs. just having the antibodies b/c you had lyme? I'm not trying to be snarky, just trying to understand. With vaccine preventable diseases they use the antibody test to see whether you are still immune. So how does it work with lyme? How will he know when to stop treating?

That's not a snarky question!! I asked the doctor the same thing yesterday. He said that lyme doctors treat by symptoms and use the blood test just as confirmation. If you've never been treated, then chances are you still have it (like me). If you get worse while treating, it means you have it. Etc. But I have the same question, how do you know when to stop treating? How do you know you've killed all those suckers so that they don't come back?

[kjbrown92]

Originally Posted by Panserbjørne

already answered you, but in theory they're looking for antigens and antibodies. Antigens cause a disease and antibodies fight it. The presence of antibodies just tells you that the disease has been fought. The presence of antigens means there's something currently being fought.

They are looking at IgG and IgM at Igenex. Which is which (antigens vs. antibodies)? Same thing with Rocky Mountain Spotted Fever - it tested IgG (positive), IgG Titer (high), and IgM (negative). He's saying that I had it at some point (not current) so does that meant the IgG is antibodies and the IgM is the antigen? Because both DS and I on the lyme test were positive IgG and negative IgM.... but since neither of us were ever treated for it, he thinks we have it. But the way you describe it, it sounds like we fought it. Is that right? I also want to know how you know when you're done fighting it. Or is it one of those things that never leaves...

[Panserbjorne]

the bigger issue is that just because the antigens aren't present in the bloodstream doesn't mean it's not an active infection. What it means is that the infection is no longer in the bloodstream. That doesn't mean it's not active in the muscles, organs, neurological system etc.

Your doctor is 100% correct. Chronic lyme is only really diagnosed clinically because blood tests can't be definitive. As long as you have symptoms you will be treated. The blood tests are helpful to show if it's something that you ever had (so they know it's worth chasing) but even that isn't accurate as not everyone mounts an immune response. If you don't there will be no antibodies to be found and you will still be very sick.

K, the good news is that you were strong enough to fight it and that your body was well enough to have an immune response. I know it seems weird, but that's actually good news.

[Panserbjorne]

Oh, and in that instance they are testing the ratio of IgM to IgG which tells you where you stand in the infection. In the beginning there will be more IgM antibodies and as the body compensates and fights the balance will shift and the IgG antibodies will outnumber the IgM antibodies. SO more IgG's tell you that you are in late stage so to speak. The infection is more chronic than acute. Does that answer your question?

[chlobo]

How do you know if your titers are high? Is that the + on the bands?

What if you don't have a definitive test? Does that mean your immune system is just screwed?

[gigismom]

Pb..could you give me your thoughts on our situation. I descibed it above but just to reiterate... I had acute lyme last summer. I started abx right away and had a positive elisa test. Ds was 18mo at the time. He was/is nursing. He has gut problems (dysbiosis) and food allergies/intolerances and did prior to me getting lyme. He recently had the igenex test and the IgG was positive (could be mine) and IgM was equivocal. His doc is consulting with dr jones in ct to get a second opinion on how to proceed. Do you think based on your understanding that this is a positive result? I probably won't hear anything until tues as this is a holiday weekend. Also, his dr thinks I may not have been treated aggressively enough. Since he was nursing my dr at the time presribed amoxicillin that I took for a month. I have no symtoms of chronic lyme that I can tell but do you think I should be tested to be sure?

Jen

[Chakra]

So I have been on treatment for about 3 weeks now and I feel sooooo crappy. So tired and weak, crabby, body aches, headaches...Does this mean a herx?

I'm also seeing a lot of flashing spots and colored spots now. Never seen those before I started treatment.

I'm having a hard time focusing and trying to work on my business too. When does it get better?

Kathy did you do the igenex for your kids too? Or just the standard test?

oh ya...I bought the book 'healing lyme' - I'm just getting intio the second chapter. I'm so happy I found this book, but it's scary khow bad this awful disease is.

[Panserbjorne]

Originally Posted by gigismom

Pb..could you give me your thoughts on our situation. I descibed it above but just to reiterate... I had acute lyme last summer. I started abx right away and had a positive elisa test. Ds was 18mo at the time. He was/is nursing. He has gut problems (dysbiosis) and food allergies/intolerances and did prior to me getting lyme. He recently had the igenex test and the IgG was positive (could be mine) and IgM was equivocal. His doc is consulting with dr jones in ct to get a second opinion on how to proceed. Do you think based on your understanding that this is a positive result? I probably won't hear anything until tues as this is a holiday weekend. Also, his dr thinks I may not have been treated aggressively enough. Since he was nursing my dr at the time presribed amoxicillin that I took for a month. I have no symtoms of chronic lyme that I can tell but do you think I should be tested to be sure?

Jen

I'm sorry, it's late and I'm tired, so you'll have to forgive me. I'm not entirely sure what you are asking. It sounds like you had lyme, got treated and have no residual symptoms, but you are wanting to test your little one to make certain you didn't pass it to him....do I have that correct? Does he have any symptoms that have cropped up since you were dx and treated?

This is a tough one. The tests are so inaccurate that unless you started seeing symptoms I'm not sure how a case would be made to treat you. Or him for that matter. I don't know that it would be considered positive but it depends on the context and what the doc is seeing.

I will also say, for what it's worth, that with chronic lyme *in my experience* the symptoms seem to crop up a year or so AFTER the abx were done. People usually do get relief from them...it's whether or not they have lasting relief that is the key. However that's not generally reflected in the bloodwork. If you have had lyme in the past, it's going to probably read the same way.

[gigismom]

Originally Posted by Panserbjørne

I'm sorry, it's late and I'm tired, so you'll have to forgive me. I'm not entirely sure what you are asking. It sounds like you had lyme, got treated and have no residual symptoms, but you are wanting to test your little one to make certain you didn't pass it to him....do I have that correct? Does he have any symptoms that have cropped up since you were dx and treated?

This is a tough one. The tests are so inaccurate that unless you started seeing symptoms I'm not sure how a case would be made to treat you. Or him for that matter. I don't know that it would be considered positive but it depends on the context and what the doc is seeing.

I will also say, for what it's worth, that with chronic lyme *in my experience* the symptoms seem to crop up a year or so AFTER the abx were done. People usually do get relief from them...it's whether or not they have lasting relief that is the key. However that's not generally reflected in the bloodwork. If you have had lyme in the past, it's going to probably read the same way.

sorry if i was confusing. i am not sure what i am asking either. yes, you are right about our situation. I had lyme while nursing, was treated, got relief, the end... I thought. my ds has had gut issues and food reactions since birth (i thought bc i was on antibiotics for a uti when he was 10 days old). I took him to a new doctor who also happens to be the leading lyme doctor in our area. She was treating him for the gut issues and he is getting better. I mentioned that I also had lyme last summer thinking that that antibiotic exposure would also certainly have done more damage to his/my gut. She immediately wanted to test him. Now, I don't see how the test could have come back different than it did. Of course he will have positive IgG because I passed that on to him. From my understanding IgM is high in the acute stages and fades over time. His test was equivocal. Just wondering if this means he was infected last summer and it has faded or that the test is just not accurate and he never had it... i realize that this is a tough one, just thought someone may have some experience or heard of a similar situation. His gut symptoms and allergies have only gotten better in the past few months since we started treating. However, the food reactions did initially get worse last summer when I did have lyme. I chalked this up at the time to the abx and he was just starting to eat more foods so had more opportunity to react. I also feel great from being on his diet and taking various supps. Thanks for any thoughts you have!

jen

[kjbrown92]

Originally Posted by Chakra

So I have been on treatment for about 3 weeks now and I feel sooooo crappy. So tired and weak, crabby, body aches, headaches...Does this mean a herx?

I'm also seeing a lot of flashing spots and colored spots now. Never seen those before I started treatment.

I'm having a hard time focusing and trying to work on my business too. When does it get better?

Kathy did you do the igenex for your kids too? Or just the standard test?

oh ya...I bought the book 'healing lyme' - I'm just getting intio the second chapter. I'm so happy I found this book, but it's scary khow bad this awful disease is.

Yes, we're doing Igenex for the kids too ($200 a test). That "Healing Lyme" book was good. That's when I decided to add Cat's Claw to my pills and the doc okayed it.

DS was sooo hyper this morning. Not sure what that's about. I'm worried that he's going to start having stomach issues again because of die-off or whatever. And the "growing pains" in his legs. All the things that went away off the foods.

Anybody know if D levels have anything to do with it. My level had been 27, got put on 2000iu/day. Had it tested again (in September after a summer with no sunscreen) and it was 48, but doctor said to take 5000iu/day because we were heading into fall/winter. Just had it taken, and it's 36, so now he's got me on 10,000iu/day. Why can't my body keep the vitamin D?

[Panserbjorne]

the reason that it's tough is that the antibodies *can* be passed through the breastmilk so it's possible he never had it. But even if he did, you are correct..the results would have been the same. However if you are seeing improvement while he's being treated I doubt that is the case. Many docs treat "as if" if there is a history. I manage lyme in a very different way so I'd have a very different perspective on that particular aspect.

I have certainly heard of babies getting it through breastmilk, and babies getting it in utero so neither is out of the realm of possibility. What I'd bring to the table (always) is the predisposition. Which he clearly had. That's where my particular focus would be. Plenty of people DO contract lyme and get over it with no pomp and circumstance. Plenty of people don't. What's the difference? That's my focus.

Always pursue health, in whatever way you can. IF you feel better being treated, changing diet, taking targeted supplements then there is no question that you are on the correct path. I have no idea if that answers your questions at all....