Hating the wait for follow-up appt... and questions to ask about conta

[pixiesmommy]

I had to postpone my follow-up to find out labs for a week (the whole office decided to attend the Lyme conference), so I am just hanging out here in limbo until next Thursday. Arghhh!

 

In the meantime, I am trying to think of things to ask. Here are some for ya'll too:

 

-Did you dr treat your whole family based on one person's positive IGENEX, etc, or did s/he also require that everyone have every expensive test done?

 

 

I still have to complete my 24 hour urine and saliva tests to turn in and there is a live blood cell test too that will be done on Thursday with instant results.

 

I feel like I am just drumming my fingers waiting to get started on figuring things out. I remember feeling this same way when we were waiting for our initial consult with Dr K to get the PANDAS dx and figure out that path. The not knowing makes me crazy!

[sf_mom]

Its a very slow process and we are still in the middle of continued testing. So, I can appreciate you drumming your fingers.

 

When we first went to our LLMD we had already completed Igenex WB and co-infection panels on two children. I am a little regretful that we did so much on the front end only to discover two of three kids don't make antibodies because its congenital LD. Once we had our first appointment, our LLMD followed with very directed testing (much cheaper as a result).... based on symptoms: DNA testing for our older son and basic Western Blot for me. When we got positive results the testing branched out once again based on symptoms and further investigation: Western blot and Babesia Fish for our other son (looking to see if he makes antibodies), Babesia Fish for me and basic Western Blot for my husband. Eventually, they will start bouncing results off the entire family and treating as we go along.

 

For my girlfriend and her son who are seeing a different very well respected LLMD, they continue to rerun basic WB and co-infection panels via Igenex while watching the CD 57s. Her son after 16 weeks of treatment is already negative for the two co-infections of Ehrlichiosis and Bartonella but is still contending with the Lyme. He has made marked improvement while his CD 57s have dropped.

 

Again, our Dr. feels it is a 2 year process for the average child to see full recovery and felt we could include the time spent treating for PANDAS..... So, yes we have at least another year of this process. Our sons TICs/OCD are in remission. Right now we get blips of stuff that lasts several days that consists mostly of mood liability. Some of the things our attention has shifted to are resolving the mood, hoping to stop the deterioration of his eye sight, repairing gut fully, fog/learning issues and physical stamina. Can you imagine, I am watching a full body rash of Livedo Reticularis fade from my twins. Painfully slow process that I pray becomes a distant memory some day. Party when its finally gone from their cheeks!!!! We've got a ways to go but we are so much better than we were as a family.

Edited October 22, 2010 by SF Mom

[pixiesmommy]

I looked up Livedo Reticularis after you mentioned it in a previous post and was astounded. THIS is what I call the "spiderwebbing" that Pixie gets during a fever/exacerbation that NO ONE has told me a name for or seemed to think it was of any significance whatsoever. She has it constantly, but it worsens during those times. I have it too, but to a lesser extent than she does.

 

I don't know what CD57 is. I'm so lost on the shorthand for PANDAS in that forum, and even more so here! I can't keep up!

[JAG10]

I looked up Livedo Reticularis after you mentioned it in a previous post and was astounded. THIS is what I call the "spiderwebbing" that Pixie gets during a fever/exacerbation that NO ONE has told me a name for or seemed to think it was of any significance whatsoever. She has it constantly, but it worsens during those times. I have it too, but to a lesser extent than she does.

 

I don't know what CD57 is. I'm so lost on the shorthand for PANDAS in that forum, and even more so here! I can't keep up!

 

My dd10 had livido reticulitis on her arms and legs before IVIG, but now it is gone. Dr. Trifiletti helped us figure out what it was and initially said it was unrelated. Then after researching it further, he said it can mean nothing and is common in females when chilled or it can be associated with autoimmune dysfunction. I'm betting the latter since it went away with IVIG.

[pixiesmommy]

Pixie's is less since IVIG as well, though I have noticed it gradually worsening as time goes one (we are almost 14 months post IVIG now)

[smartyjones]

Again, our Dr. feels it is a 2 year process for the average child to see full recovery and felt we could include the time spent treating for PANDAS.....

 

 

wendy -- are you saying your dr thinks 2 years from the discovery and treatment for TBI . . . or 2 years including the previous treatments b/c it's been for infectious pathogens even though not specifically TBI?

thanks.

[sf_mom]

Yes, two years from the moment he started taking Azithromycin which was August 2009. Again, I think there are individual consideration. i.e. our children don't make antibodies for the infection and therefore might have more difficulties with recovery or a certain child may have multiple co-infections. I'm counting at least an additional year of treatment.

[sf_mom]

Livedo Reticularis is associated with auto-immune and Lupus. Lyme the great mimicker often mirrors Lupus.

[Megs_Mom]

Livedo Reticularis is associated with auto-immune and Lupus. Lyme the great mimicker often mirrors Lupus.

Does Lyme cause high ana's? Or do you mean that it mimics the symptoms? Lupus is also a mimic. Thanks

[sf_mom]

It can.... its one of the question on initial consultation form for our LLMD. Do you have elevated ANA. Yes, it mimics symptoms of Lupus and often people are misdiagnosed as a results.

[pixiesmommy]

This is interesting to me, and I have read it too, because my mom is DX with Lupus (as of 2 yrs ago.) I was talking with my LLMD about history and the possibility that I may have congenital Lyme, and he said he was 99% sure I had Lyme without testing, and 99% my mother has Lyme without testing or having met her (based on history/symptoms alone.) My mom is in NC and is freaking out. I have told her not to worry, but to be glad we are getting some answers! She's waiting on my official DX before she pursues anything with herself.

[sf_mom]

Now, I'm anxious for your results. Drumming my fingers on the counter... a Lyme Diagnoses will provide a lot of answers for your family like it did ours.