Pixie-Positive for Lyme and Addison's Disease

[Megs_Mom]

It could be herxing. I will try to be more diligent about epsom salt baths-- provided I can get her into them. I think we are going to change doctors- apparently there is another in the area.

 

I am totally emotionally and physically crashing. This same dr started me on thyroid meds for hypothyroidism, and I am totally bottoming out since starting them about 2 months ago. Looks like I will be off to the endocrinologist too.

 

Something better give soon, because we are tapped out financially. DH and I talked last night and I basically told him I am about to give up on everything and just say, "Screw it. We're not getting any better from anything, so why keep struggling to afford it?"

 

I know I'll feel differently in a few days when I get another small influx of energy, but for now, I am totally BLAH.

Hi - I am so sorry you are going through all this. I have followed your story from the start, and have always felt that you were taking good healthy steps for your entire family. I would go with your gut regarding this doctor. A lot of things in your post disturbed me, and I expect that would be my gut instinct as well. If you find the next doctor has a better bedside manner, but the facts are the same, then you will have learned something. But our experience (DH) with an LLMD has been very very different than this. She is very cautious, tries to keep our expenses to a minimum, is very upfront about concerns, and listens very well. She also does not diagnose "everything", if she sees odd test results, she will send to a specialist. I'm not sure I would be terribly comfortable addding thyroid results & lyme all at one time, as thyroid issues alone can be an unbelievably complex challenge. (Just decisions on natural vs synthetic medicines can be a big one).

 

Given that your test results are fairly indeterminate, and that you have a long history of working with similar challenges with Pixie, I'd suggest looking back at your charting. What has worked? What other circumstances may have helped or hindered treatment. What has made Pixie worse? Is the treatment worth the tradeoff at this time? What does your insurance cover best?

 

I think you must be exhausted emotionally and financially right now. I wonder if you can take a week of making no decisions, finding some calm, and then come back to it. Sometimes it can start to feel like there is so much pressure from all directions, and a decision has to be made right away. But that is generally not true - usually a week is ok, and you can come back to it again.

 

If you were "just" dealing with PANDAS, I am sure parents would ask you questions like "perhaps you have an exposure or break-through strep issue". If that is possible, then adding an abx like Azith might help. Perhaps Pixie has PANDAS and an underlying Lyme issue? Maybe the challenge is that you are in the middle of cold & flu season and her antibody load is very high right now. I can't remember, did she have her adnoids and/or tonsils out? We did adnoids due to high re-occurance of ear infections and while this did not change the immediate situation, it has helped us avoid "blips" during the cold and flu season simply because she is no longer getting an ear infection with every respiratory illness.

 

I'm sad that I don't have much of any use to offer you, but hope you know that many of us on all the boards watch your story, and hope with all our hearts that you find the right answers for your entire family.

[pixiesmommy]

Thank you. That was really encouraging, and I definitely do need a pep talk!

 

There is not a doubt in my mind that Pixie does have PANDAS/PITAND, because we do see her response, and the pattern in her life, to strep. I am frankly SHOCKED that IVIG helped her as much as it did, but then I think of all the things that we did that coincided with that time- specifically diet changes- that impacted those results too (IMO.) Strep is RAMPANT at her school right now, so she is obviously responding to that on top of whatever else is going on. My gut tells me that she is not "just" PANDAS.

 

From what I have learned, things like to travel in packs and have these "relationships" with each other. Mold likes Mercury, and vice-versa. Strep is tied in there somehow, possibly to the mercury or to a parasite from, or something else entirely. Gluten factors in too, somehow, at least for us. I just keep thinking if we can "un-bind" some of these things, then we can "detox" whatever is going on. I know that is very simple way to put it, but that's how my mind makes it make sense, even if it's not the most scientific terms.

 

I think we are going to start seeing a new Lyme doctor. We talked to Dabel (who got the recommendation from IowaDawn) and there is another LLMD in our area. There is just too much weirdness with the dr we had been seeing for us to feel trust with him and want to continue.

 

We go back to the endocrinologist on Feb 1 to see if she really does have Addison's. I'm dying to know. I wish they would just read the results to me over the phone. I have no patience for these things- it feels like such a race against time for our health and sanity anyway.

[sf_mom]

From what I understand you'd be in good hands with this new Dr!!!

 

Good luck and I look forward to hearing of progress.

 

-Wendy