LLMD Appt

[Suzan]

We saw our LLMD today for the first time. I don't quite know what to post about, there was so much going on and it was so hard to keep up. I really like her and I think she will be a great doc for us. 5.5 hours of appts today. It was a marathon.

 

She agreed that we all have lyme. dd9 is a clinical diagnosis, dd8 and I were confirmed by Igenex.

 

She is starting me on treatment first so I can see how I do to ensure that I can take care of the children well when they start. This was hard to hear since I am so wanting to get them some help. But since they are on zithromax and probiotics already, and this is a part of what the protocol would be, I do appreciate and understand her position. I am their sole provider and if I can't take care of them, we are up a creek. Her goal is to keep me at work and the kids at school but to also get rid of the lyme, a delicate balance.

 

She can't tell how long I've had it so she is assuming the kids got it from me during childbirth but there is no way to know. So we can't know how much of their symptoms are from lyme. It's just time to start the treatment and see how we do.

 

She is happy to work with our local neurologist so we will talk again at our next appt in December to start the kids treatment. She thinks they will still need IVIG's down the road.

 

I don't know what else to say. My mind is on overload.

 

Susan

 

I start this week after my blood draw with Stage 1 (should take 3-4 weeks) Nystatin, Diflucan, Questran, Plaquinil and Flagyl. Then stage 2, Zithromax and stage 3, Amoxicillian

Edited November 3, 2010 by Suzan

[sf_mom]

Susan,

 

That was a long appointment but so glad it worked out. It is a lot to take in and once you decompress I look forward to hearing if you learned anything new. I sure hope you fair well with treatment too. Did she give you an anticipated timeframe of treatment for you?

 

Does she anticipate doing any other testing for co-infections for both you and the girls.

 

-Wendy

[lyme_mom]

We saw our LLMD today for the first time. I don't quite know what to post about, there was so much going on and it was so hard to keep up. I really like her and I think she will be a great doc for us. 5.5 hours of appts today. It was a marathon.

 

She agreed that we all have lyme. dd9 is a clinical diagnosis, dd8 and I were confirmed by Igenex.

 

She is starting me on treatment first so I can see how I do to ensure that I can take care of the children well when they start. This was hard to hear since I am so wanting to get them some help. But since they are on zithromax and probiotics already, and this is a part of what the protocol would be, I do appreciate and understand her position. I am their sole provider and if I can't take care of them, we are up a creek. Her goal is to keep me at work and the kids at school but to also get rid of the lyme, a delicate balance.

 

She can't tell how long I've had it so she is assuming the kids got it from me during childbirth but there is no way to know. So we can't know how much of their symptoms are from lyme. It's just time to start the treatment and see how we do.

 

She is happy to work with our local neurologist so we will talk again at our next appt in December to start the kids treatment. She thinks they will still need IVIG's down the road.

 

I don't know what else to say. My mind is on overload.

 

Susan

 

I start this week after my blood draw with Stage 1 (should take 3-4 weeks) Nystatin, Diflucan, Questran, Plaquinil and Flagyl. Then stage 2, Zithromax and stage 3, Amoxicillian

Wow! So glad you liked her! She is starting you on some strong stuff. Diflucan and flagyl are cyst busters. I took flagyl and it made me feel a little on edge but I felt better when I stopped it. I know others who feel it really helped them. Try taking it w oj to avoid tasting it- so gross. Makes sense to stagger the herxing starting with you. I feel so bad for you and what you have ahead of you but know that you will gt better and so will your kids now that you are treating the tbds.

[Suzan]

We saw our LLMD today for the first time. I don't quite know what to post about, there was so much going on and it was so hard to keep up. I really like her and I think she will be a great doc for us. 5.5 hours of appts today. It was a marathon.

 

She agreed that we all have lyme. dd9 is a clinical diagnosis, dd8 and I were confirmed by Igenex.

 

She is starting me on treatment first so I can see how I do to ensure that I can take care of the children well when they start. This was hard to hear since I am so wanting to get them some help. But since they are on zithromax and probiotics already, and this is a part of what the protocol would be, I do appreciate and understand her position. I am their sole provider and if I can't take care of them, we are up a creek. Her goal is to keep me at work and the kids at school but to also get rid of the lyme, a delicate balance.

 

She can't tell how long I've had it so she is assuming the kids got it from me during childbirth but there is no way to know. So we can't know how much of their symptoms are from lyme. It's just time to start the treatment and see how we do.

 

She is happy to work with our local neurologist so we will talk again at our next appt in December to start the kids treatment. She thinks they will still need IVIG's down the road.

 

I don't know what else to say. My mind is on overload.

 

Susan

 

I start this week after my blood draw with Stage 1 (should take 3-4 weeks) Nystatin, Diflucan, Questran, Plaquinil and Flagyl. Then stage 2, Zithromax and stage 3, Amoxicillian

Wow! So glad you liked her! She is starting you on some strong stuff. Diflucan and flagyl are cyst busters. I took flagyl and it made me feel a little on edge but I felt better when I stopped it. I know others who feel it really helped them. Try taking it w oj to avoid tasting it- so gross. Makes sense to stagger the herxing starting with you. I feel so bad for you and what you have ahead of you but know that you will gt better and so will your kids now that you are treating the tbds.

 

Thanks LymeMom and Wendy!

 

Regarding the Flagyl, we are starting at 1 weekend a month to spread it out. I think she feels we need to hit it with the three stages (she drew a great picture that really helped me understand )

 

I don't know if I learned anything new, I guess in a way it was all new or a deeper level of understanding. But I don't have an idea of how long treatment will be. I'll have to have that in my list of questions for next time! She did say she felt like it will be a long road for me.

 

Susan

[NancyD]

Yikes Susan, what a marathon ahead for you. My heart goes out to you. I am anxiously awaiting the results of my tests -- I might be right behind you, but I only have one, not three. It's hard enough being a single parent (and sole provider) taking care of children with health care needs, but for us to be sick too...I always say "I don't have time to be sick!" I can understand why you would want your kids to get going right away with their treatment, but it sounds like your LLMD is really taking everything into consideration to help your entire family. I will be following your situation closely. Please keep posting and stay strong.

 

Nancy

[sf_mom]

Susan,

 

I big hug... How far is your Mom from you? My girlfriend is also worried about her job as sole provider. She had a great talk with her boss and is working from home when need to get her through the first couple of months. Starting now is good because the holidays will be upon us and hopefully expectations are a little less.

 

Stock up on Motrin/Alka Selzer/Benadryl.

 

-Wendy

[philamom]

Suzan- I think you are making the right decision to treat yourself first. Maybe you can begin them on some detox supplements in preparation, at least some good probiotics (which I'm sure you're probably already doing). I remember some here taking milk thistle, so I need to mention it can NOT be taken with flagyl. Hugs!

[cobbiemommy]

Suzan,

That was quite the long appointment. Your doc sounds very caring! She doesn't happen to be in Lee's Summit, MO does she? This sounds so much like the advice that DS's doc gave us. I hope that you will feel better soon and your girls as well.

Cobbie