Post Lyme etc. treatment

[JuliaFaith]

This forum helped move us to the lyme board a while back, but checked with this forum whenever possible. But now it is time to return here as, I believe, lyme treatment along with several other treatments are over or nearing the end. Really need to pin down dr. on what we are now treating. Ds14 did have approx. 6 weeks of 'starting to feel better' for the first time in over 2 yrs.

 

Then, had his first "PANDAS" flair since starting treatment with this doctor. Dr. thinks it was a variety of different things that started it. I wonder if it is myco since he starts with cough and it gets worse from there. This time was a bit different since he started with 'Not wanting to get older and wanted to die!" which progressed into cough/throat tic/stomach pain. My prior back-up plan (start abx immediately) was not available at the time and he was already on Rifampin so did not know what to do. Dr. took him off Rifampin immediately over phone. Used Advil/Benadryl in the meantime and continued with detox/thyroid support. Had to wait 2 days to see doctor so symptoms ramped up more than I had seen during last flair over 1 1/2 years ago.

 

Now Dr. put him on Augmentin-3 weeks and Azithromycin-several months. He told dr. that he felt better on Quintessence/lipohealth mix so she added that back along with Artemsinin/Mimosa pudica.

 

Parasite treatment will be started as soon as all meds are received. The Mimosa Pudica treats parasites/depression so hopefully this helps with the depression part. He is also taking probiotic/gaba mix which helps as well.

 

The 'depression' issue is one that he seems to need some help in. Normally, he tries really hard to be happy but I can see it wearing on him over the months/years of treatment. Took him to counselor but she was not very receptive to a chronically ill child. Any ideas for this would be greatly appreciated.

[LNN]

Well, you can go back to the old neighborhood and see my new post about mold, as you're one of the gurus I was asking for advice. So I guess I don't need to suggest mold here. You've been there, done that. Just do a mental check about air conditioners.

 

My DD7 has scary depression and I'm no Good kind of thoughts. Tryptophan helped her a lot, as did proper methylation. I overdid things (see this post http://www.latitudes.org/forums/index.php?showtopic=18185) and I haven't added back any tryptophan - tho I will if school anxiety comes into the picture.

 

I forget who, but someone here suggested I read this book and it really helped http://www.thewayup.com/ebook/f/TheWayUp.pdf The book talks about using both tryptophan and tyrosine but tyrosine didn't seem to do anything one way or the other for DD (It does help DS with focus tho). You can see why both supplements would help with depression by looking at the methylation cycle in Circle 2 http://www.heartfixer.com/AMRI-Nutrigenomics.htm where tryptophan gets converted into seratonin and tyrosine supports dopamine synthesis.

 

Of course, your DS is 14, so no telling what role changing hormones and/or years of chronic illness could be playing. Just some ideas to run by your doc. I hope you figure it out soon!

[JuliaFaith]

Just started thinking that maybe the "not wanting to get older" is an OCD symptom. He said "cannot seem to get out of his head".

 

LLM-Thanks for your reply! Wondering if your daughter's cough is the same? As for air conditioners, we do not typically use them in our part of the country, so not an issue. They do seem to present some issues with mold so good you are looking into it. I wonder if finding the manufacturer on line and finding out about maintenance would be helpful. There may be more that you can do to clean the unit itself. Can it be removed so you can look at duct work as well?

[dut]

Hi - just on the therapist front, Dr keller in Redmond suggested we try Shelly Mackaman also in Redmond. She says she gets PANDAS. She has a lonmg waiting list, 6 months or so and we have yet to see her so can't comment personally but she came highly recommended.

 

Hope you get this flare under control soon.

[JuliaFaith]

Hi - just on the therapist front, Dr keller in Redmond suggested we try Shelly Mackaman also in Redmond. She says she gets PANDAS. She has a lonmg waiting list, 6 months or so and we have yet to see her so can't comment personally but she came highly recommended.

 

Hope you get this flare under control soon.

Dut--Thank you! Checked up on you a while back. Hope treatment is going well. Take care.

[Hopeny]

Just want to commiserate this is the most awful thing when your child tells you that. My DD8 (Lyme/PANDAS/Myco)seemed to actually have suicidial obsessive thoughs took us a while to figure that out, that it was actually obsessions. In my DD's case it was totally misdiagnosed as depression. They have mostly gone away with abx. Our new wonderful psychologist, told me that with OCD this suicidal thought comes up as a way to alleviate anxiety. They don't actually want to die, they just don't know how to alleviate the anxiety so that thought is calming. I know its extremely alarming but this has helped me to better understand and focus on the anxiiety/other calming ideas. Fortunately I just found a wonderful psychologsist who specializes in chronically ill children, while her focus is on Lupus children she just really gets it. I imagine there must be some others like her. We are in the NY area outside of NYC, if you are near I am happy to give you her name. Oh to add my DD's suicidal obsessions went out of control on high dose amox treatment for Lyme. Doxy helped calm it down and the augmentin/biaxin really took her to a manageable level. Hugs, you are not alone.

[JuliaFaith]

Just want to commiserate this is the most awful thing when your child tells you that. My DD8 (Lyme/PANDAS/Myco)seemed to actually have suicidial obsessive thoughs took us a while to figure that out, that it was actually obsessions. In my DD's case it was totally misdiagnosed as depression. They have mostly gone away with abx. Our new wonderful psychologist, told me that with OCD this suicidal thought comes up as a way to alleviate anxiety. They don't actually want to die, they just don't know how to alleviate the anxiety so that thought is calming. I know its extremely alarming but this has helped me to better understand and focus on the anxiiety/other calming ideas. Fortunately I just found a wonderful psychologsist who specializes in chronically ill children, while her focus is on Lupus children she just really gets it. I imagine there must be some others like her. We are in the NY area outside of NYC, if you are near I am happy to give you her name. Oh to add my DD's suicidal obsessions went out of control on high dose amox treatment for Lyme. Doxy helped calm it down and the augmentin/biaxin really took her to a manageable level. Hugs, you are not alone.

Thank you so much Hopeny, you have no idea how timely and relevant your input is.

 

Now on day 3 of abx. he seems to be settling down a bit. I think the side effect of benedryl (sleepiness) was actually very helpful in the first few days of this which makes sense along with the obsessive thoughts and anxiety.

 

You are lucky to have found a good psychologist in your area. We are on the other side of the states, but thank you for the offer. Started looking today (thanks DUT for recommendation) because just the stress of chronic illness over 2 yrs. seems to be taking a toll on him.

 

Keep healing and best wishes to your family!

Julia