What else is going on here?

[scoobymummy]

I haven't been on here for awhile. I've been treating my son for PANDAS for the last 6-10 months with prophylactic antibiotics and it's helped a lot with certain symptoms - certainly the ocd behaviours and tantruming have decreased significantly. So that's left the myriad other symptoms on the table.

 

So here we go....

 

Both my son and I have the strep titre in our bloodstream. After abx treatment, our levels are normal. DS continues on prophylactic abx.

 

We both suffer from the following:

 

- muscle knots throughout the body that are very painful. Respond well to trigger point massage, but never go away.

- fatigue and lethargy

- brain fog

- anxiety

-extreme sensitivity to weather - prior to weather change, we get very hyper/anxious, then incredibly tired (I had mono in the past and that's what it feels like), muscles knots start to ache, start to see spots, vision is wierd, eventually get a headache.

- extremely sensitive to light and sound

 

We'll have periods, usually when the weather is stable, but it always returns.

 

- I've had migraines since puberty, always low energy, endometriosis, digestive issues

 

- DS was 'colicky', needed to be held constantly, had digestive issues as baby, as toddler had extreme tantrums (like many a day, lasting up to an hour in duration)

 

I've recently been finding many of these symptoms, with the addition of wierd allergy-like symptoms, itchy bumps, in my siblings and found out that my grandmother had many of the symptoms as well.

 

I'm starting to think fibromylgia. I've been looking at Lyme, but a lot of it doesn't seem to fit. On the other hand, I live in Ontario where there is a lot of lyme (born here) and lived in Mexico where there were lots of ticks (I remember finding them on the floor in our house). Just starting to read about congenital lyme.....

 

Does anyone know if fibro can be passed from mother to child?

 

Sorry, that's a ton of info, but I'm slowly trying to figure out the layers of what ails us. Treating the PANDAS has been a huge help, but want to go to the next step.

[scoobymummy]

We've both had most of the blood work over the last couple of years. He has very few food sensitivities. GFCF diet had no result, although he does take enzymes to help digest and that helps a lot. Somehow probiotics slipped by me - that's an obvious one I should have thought of. With a mamma with a foggy brain it's a little like the blind leading the blind sometimes. Thanks for reminding me of that. I have a great DAN ped here and a an excellent naturopath. I know my DAN didn't believe that Lyme can be passed on from mom to baby, but she's willing to test for it if I want

(she's very receptive to any new ideas). We just didn't want to interfere with the abx at the time. I'm seeing the naturopath in a few weeks and the ped in June, so between them I'll run the lyme and check out your other suggestions. Just wondering about fibro, though, as those symptoms seem to ring more of a bell to me with our symptoms.....unless Lyme is one of those disorders that has an incredibly long list of symptoms and looks different in everyone(?).

[LNN]

Just wondering about fibro, though, as those symptoms seem to ring more of a bell to me with our symptoms.....unless Lyme is one of those disorders that has an incredibly long list of symptoms and looks different in everyone(?).

 

Some publications refer to lyme as "the great imitator" because yes, the list of symptoms is very broad and overlaps with a lot of other diseases as far as symptoms go - just like fibromylagia does. And it does seem that lyme can be congenital. This was posted on the lyme forum the other day and may be helpful...

 

You may want to look specifically at Bartonella, which is the most common culprit for neuropsych issues like OCD.

If you chose to pursue lyme, there is a lot of misunderstanding out there and much disagreement. So you will have to do a lot of your own homework to sift thru and decide what makes the most sense for your family.

 

I do have two questions about a fibromylagia dx - first, I'm not familiar with it being something that effects kids. Am I mistaken? And also, if you do get dx'd with fibro, what is the course of treatment? My understanding is that it's more about symptom management than cure. Any info you have would be appreciated.

[scoobymummy]

I do have two questions about a fibromylagia dx - first, I'm not familiar with it being something that effects kids. Am I mistaken? And also, if you do get dx'd with fibro, what is the course of treatment? My understanding is that it's more about symptom management than cure. Any info you have would be appreciated.

 

I don't have a fibro dx yet, just seems that the list of symptoms is the closest to what both of us are experiencing. Yes, there is pediatric fibro http://www.mamashealth.com/book/kfibro.asp. I don't know much about treatment yet, I've just started researching, but I think you're right that it is mostly about controlling symptoms. Trigger point massage is a big one (fabulous by the way). I'm still at the tip of teh iceberg of info. Once I've read more, gone to my naturo, my ped, I'll have more of a direction for treatment, but for now I'm just trying to gather information and see if there are others out there with similar symptoms.

[EAMom]

Hi Scoobymummy,

 

have you read the book Cure Unknown? I read it awhile ago...I believe it was there that it was mentioned that a lot of fibromylagia is actually undiagnosed Lyme.

 

I would definitely explore the possibility of tick born diseases given your history of tick exposure.