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Posted

I've completed my 2nd month of lyme treatment. I feel horrible. The first month was really good, very nice improvement. Now after the 2nd month, I feel like I'm back sliding. Herxing I guess, some symptoms that went away are back (ringing in ears, brain fog, excessive tired). Starting to get depressed I guess after such a great 1st month, now reality sets in and worried this is going to take forever. Any emotional stress or adrenalin makes me feel like I will break apart and I can barely walk. How can emotions affect the body so much?

 

dd9 is having weird symptoms. Right now, her left eye is a little swollen and feels numb and is very bothersome to her. Bad rashes and eczema. Lots of pain.

 

I'm stressed about all the abx. It's messing with our gut. Even though I know we are on the right track, I keep questioning whether we are doing the right thing.

 

dd8's breath smells like strep and she's ramping up with her food OCD. She's on 250 mg zith a day. Could it really be strep? I want to start her on her lyme treatment because she's getting burning pain and back pain but we are still stablizing her seizures before we start.

 

Thanks for listening. Just overwhelmed and needing to post about it.

 

Susan

Posted

Suzan...i didn't know you were over here!!!!

 

it sounds terrible!!1... i just want to cry.....

i so hope you and your dd turn the corner soon!!!

 

i was happy to find something else to attack...as ds has not gone into complete remsiion since onseet 1 3/4 years ago...

and ds was in line for pex..........so i guess i will have to cancel....

 

but now...i just don't know if i can ride this wave.....

i don't know if you know...my ds8 started to tic just before Christmas(i thought he my non-panda kid)

and my ds 3 had some tics in aug on our road trip to the panda docs....went away after 2 rounds of abx for ear infection, that wouldn't go away

2010 was not a good year..i went from 1 panda to 3

 

i was holding so well....but in the last hour...i am scared...and feel a little hopeless

Posted

Why are you cancelling PEX?

 

That was one of the best things we ever did. Took a humongous edge off the entire set of symptoms, and even as bad as things got months later, because he never got the PEX he was supposed to get (all the problems at the hospital at that time,) I truly believe it was what made most of the difference for both my boys. But, there's no question in my mind that it definitely needed to be followed up with IVIG, and now that we are also finding Lyme, needs the Lyme tx, too.

 

This is such an amazingly complicated disorder.

Posted

Fixit, yes, we found out about the lyme in October with our positive tests and saw our LLMD in November. Lyme is no fun. But it really is better to know about it and attack it than to go unaware. I agree with tpotter, it is complicated and I think that is what is bringing me down this month. So many things to think about and manage. But from what I hear from those who have gone before me here, it will get better.

 

I am VERY sorry you have gone from 1-3 pandas kids! I know you are overwhelmed! Just keep coming here and posting and we will help each other through it all.

 

Susan

Posted (edited)

oh my gosh you guys...things will get better. Susan, I know how you feel and am in my second month of lyme treatment myself. For me the first month was the worst but I am actually feeling much better now. Just hang in there because I have heard the first few months are the hardest but that things will then begin to even out. HOPEFULY this is true. Take care of yourself. I know how hard it is to go through this right along side of your child but trust that you are doing the right thing and real healing can be achieved. Take a hot bath and some alka seltzer gold! :)

Fixit...I can't even imagine how overwhelmed you are worrying about 3 kids with whatever you call this disease! I hate to even ask but have you checked the other two kids for lyme yet? Its crazy but it seems to be running in families! Kim

 

Suzan...i didn't know you were over here!!!!

 

it sounds terrible!!1... i just want to cry.....

i so hope you and your dd turn the corner soon!!!

 

i was happy to find something else to attack...as ds has not gone into complete remsiion since onseet 1 3/4 years ago...

and ds was in line for pex..........so i guess i will have to cancel....

 

but now...i just don't know if i can ride this wave.....

i don't know if you know...my ds8 started to tic just before Christmas(i thought he my non-panda kid)

and my ds 3 had some tics in aug on our road trip to the panda docs....went away after 2 rounds of abx for ear infection, that wouldn't go away

2010 was not a good year..i went from 1 panda to 3

 

i was holding so well....but in the last hour...i am scared...and feel a little hopeless

Edited by momofgirls
Posted

Thanks all..

 

tpotter..you don't think i should cancel pex...i was going to call tomorrow...

maybe i will think about it over the weekend....

wont doc l cancel it if i send the dot blot???..she didn't know i was doing it..

i just wanted to followup as band 39 was ind....none of my docs thought it so...i know my dan was kinda surprised...

 

suzan,,thanks for the support as you are going through a rough time...

 

momofgirls..well..when i did orignal western in 4/10...just 41+ and 39ind...all my panda docs said not lyme...

and ds did great on the taper in july...and we've held some of the ground we made then, but not all...

though i will say..orgianl burst in feb made him worse..though again we had 4 fantastic days a few weeks out..but rebounded back to h(*(*& the begining of the steroid...

 

so...as i was preparing for a big gun..i was getting my ducks in a row...ta in sept..a little improvement but not complete hold...and with all the talk of lymes...i thought...let me just cross my T's....and asked for dot blot...with not much expection from me or my doc....

we just completed samples in early dec and i just got our results yesterday....i am just starting to digest this....

i lined the docs up just incase, and figured i could cancel..but id' go see at least one in person, no matter what the results read.....what the heck is another couple hundred?? <_<

 

i was thinking i should test me and dh first....

my only symtoms that stuck out from the list are...thyroid..i am a misquito buffet...and even though i have a great vocabulary, i cant use it because my brain cant find the words sometimes...

Posted

Susan,

 

Big hug, I know your pain... just two days ago the Lyme was killing me with headaches, night waking and deep, deep bone pain. I figured it was because I was in my third month of treatment!!!!! Anyway, today better than ever, energy, happy and 'enjoying' my children. My only resolve when I feel awful is that it will get better and it always does..... AND, during the dark moments I remind myself to treat the symptoms, advil, epsom salt baths, light exercise, rest when needed.

 

Hang in there.

Posted
i was thinking i should test me and dh first....

my only symtoms that stuck out from the list are...thyroid..i am a misquito buffet...and even though i have a great vocabulary, i cant use it because my brain cant find the words sometimes...

 

I don't know about what to do about the PEX but I would get you and dh tested for sure. I was "fine" before I fell apart in July after having a very traumatic experience that I believed triggered my lyme. Before then, thyroid, low vit d, low magnesium... lots of little symptoms that could be explained or ignored. In retrospect, I've been affected for a long time.

Posted

I would talk with Latimer about PEX and Lyme. I do understand it has been used for babesia treatment and with the 'right' antibiotics it might be very helpful. I think some kids with Lyme that were treated for PANDAS with PEX might not have been on right antibiotic protocol post treatment to fully eradicate symptoms and why some never achieved full remission. However, if PEX was not covered by your insurance Lyme is definitely recoverable without PEX or hdIVIG.

Posted

AND, during the dark moments I remind myself to treat the symptoms, advil, epsom salt baths, light exercise, rest when needed.

 

Hang in there.

 

Wendy, You just reminded me that I got the heater today in the mail for my FAR Infrared Sauna. I hope that means the rest of it is not too far behind. I can't wait to try it. I've been soaking my feet in the kids salt baths and it really does help a lot. I've started walking 5 min a day on the treadmill when I remember (50% maybe). So you are in your 3rd month? I thought you were a little farther along than that. You hang in there too.

 

Kim, thank you for your support! I am glad you are feeling better and I hope it continues for you!

 

Susan

Posted (edited)

I was on Azithro since August and only started multiple antibiotics Oct. 1st. I view later date as my first month of treatment.

 

Funny, I am checking into converting our hot tub to salt water!!!!!! I gave my husband the wish list yesterday that included FAR Infrared sauna and Lyme zapper (I don't even know if there is such a thing)....

 

Anyway, sounds like DD9 is herxing.

Edited by SF Mom
Posted

Oh Susan...hang in there, it will get better!

I know your concern about the gut issues. I'm always in constant fear with my daughter having 3 past c-diff infections, but I've been amazed that we have less stomach issues/complaints since treating for lyme. I even allow her to have pizza, ice cream, and other dairy once in a while with no problems. Just keep up the probiotics!

Just wanted to let you know I'm thinking of you and the girls!

Posted

Hi Susan,

 

Just wanted to add another message of support. Hang in there! I would just say that it is important to stay in touch with you doc and report all of these things (in case you hadn't done that).

 

I hope that even though you are doubting yourself now, you think back to your first month and the improvement you saw with treatment. That's not a coincidence. Treatment for these infections can be a windy road... but you'll get there!

 

Mary

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