Re: My story and a question

February 12, 2011

kat,

thanks for sharing your story. i can totally relate to you about the " lyme

rage " . i have been on oral antibiotics for the past 2 years after having

lyme for 6 years undiagnosed. i used to fly off the handle a lot, but with

treatment i almost never do anymore. i have had my share of crying thinking

of how i treated my kids....i just aopologize and they see that i am getting

better so it helps to know it was from the lyme. the good thing is with all

of you that now you can start to heal. i wish you and your family the very

best in recovery. make sure to look into all the herbs too, they have helped

so much.

teasel, smilax, 5 HTP, glutathoine, vit d (those with lyme are usually

low), also check iron levels and thyroid, resveratrol, to name some that

have helped me. everyone is different but it sounds like you are good at

educating yourself what i did during my emotional rollercoaster times is

i loved my kids and husband up big time when i wasn't acting like a crazy

lady, and i told them this is the real me, the other is the lyme, altho i

always said it wasn't an excuse. i had an agreement with my kids that

whenever i started to act " that way " they could calmly say " mom, you are

hurting my feelings " or " mom, you are yelling too much " i would immediately

put myself in a time out to calm down, that helped alot too and they didn't

feel so helpless. best wishes

On Fri, Feb 11, 2011 at 5:35 PM, Health Coach Kat <kat@...> wrote:

>

> Hi all,

>

> I’ve been hovering here for a while and realized that I have not shared my

> story. Our Lyme journey officially began last year when (after several years

> of misdiagnosis and is some cases mistreatment by docs) my husband finally

> got diagnosed. Long story short, he’s more neurological with his symptoms

> and he was having cognitive problems. For that reason, I went with him to

> his first 2 hour appt. with an ILADS doc to take notes, etc. I’m 44 and over

> the course of my life I’d had little things here and there plus

> hypothyroidism. I was maintaining pretty well with my thyroid meds (and a

> healthy diet, which I think was my saving grace now that I look back). I

> would have what I call ‘episodes’ where it felt like I was getting the flu

> and it always would happen during stressful times!

>

> Anyway, I’m sitting there in my husband’s Lyme appt listening to them go

> thru ‘the checklist of symptoms’ and I’m thinking to myself, “yes, I have

> that, yes that one too.” Finally I said something and they said they thought

> they should test me! My test was positive and it showed they were active!

> Was I ever floored! What is even more unbelievable is that I’ve had it since

> I was either very small or I was born with it. Not sure which. My mom won’t

> get tested. Anyway, I have a 4 and 7 year old that got it in utero from me.

> They have had some problems since infancy and are now getting treatment from

> Dr. !

>

> It has been an uphill battle of the blind leading the blind in my house.

> Being that I’m a stay at home mom and do most of the care giving…the brunt

> of dr appts and medicine doling out falls on me. If I remember to dole out

> all of the meds and supplements (which I don’t LOL) I’m usually battling my

> aching muscles and joints to do it. Thank God I went to school for health

> and nutrition last year as it’s help me help myself a lot…I’m functioning

> ok. Which is better than some stories I hear. Don’t get me wrong, my husband

> is a great man but a very sick man who goes to work every day (when he

> shouldn’t be) just so we can have health insurance and $$ to pay for all of

> this insanity. I’m actually looking for either an IT job or a health related

> job so he and I can switch. He really needs to be at home healing.

>

> Anyway, that’s my long winded story. My question is this. 3 our of 4 of us

> have the emotional (anger/odc, etc) that goes along with Lyme. My daughter

> and I have the brunt of that. My 7 year old daughter has what I call

> meltdowns that resemble a 2 year old tantrum when something doesn’t go

> right. She’s a little on the ocd side, so it could be something as small as

> something being out of order (like a sequence of events at bedtime, etc). If

> I having a bad day, I respond calmly at first but get angry very quickly

> when she starts slamming doors and tearing up her room. Has anyone

> experienced this? Any advice on what to do. It seems to get worse with her

> meds which makes me think it’s a herx reaction or maybe even yeast. She does

> crave the sugar! LOL me too for that matter! LOL But we resist for the most

> part.

>

> Thanks for listening. I don’t get to go to Lyme support group meetings

> because of scheduling and distance so I really don’t have a support chain…

>

> Kathy in VA.

>

February 20, 2011

Your story is similar to my own, except I probably infected my husband who,

thank goodness, is only mildly affected. My mother and I have positively traced

the tick-borne soup back to her childhood at the very latest for sure, but we

highly suspect it goes back to her grandmother's childhood. My grandmother just

passed away this past Oct from a drug reaction we believe was caused by the

tick-borne infections.

The Lyme rage is (unfortunately!) quite real and we've dealt with it extensively

here in my house. I had some issues with it when I first " crashed " a few years

ago. My son, however, holds the record for worst case in our family...by FAR. Of

course both my kids inheirted this stuff (as did myself and my siblings, and

likely my mother and grandmother and their siblings, as I said). His rage issues

started as a toddler at which point they were just very intense tantrums. As he

aged, though, instead of things getting better they got worse. He would have

meltdowns (we also use that term, lol) exactly like you describe, and for the

silliest reasons as well. I can remember many over forming a letter incorrectly

when writing. We're talking knock-down, drag-out meltdowns because his letter

'a' didn't look just the way he wanted it to. *sigh*

For us the biggest thing that has helped (loooooooooong term) has been

bartonella treatment. Short-term there hasn't been much we *could* do besides

physically restraining him and just trying to survive the screaming, kicking,

throwing, etc. A lot of times that was MUCH easier said than done, especially

when I was at my sickest and didn't have the strength to pick up a coffee mug,

let alone hold down a seriously out-of-control 70lb boy!

Any of the antibiotics that cross the blood brain barrier help with the rage

symptoms, but we've really seen the best results with those that also target

bart. One thing, though... zithromax has probably been THE most helpful

brain-wise for myself at least, and likely my son as well, but while it has been

the best, it also brought about some REALLY intense herxing (worsening of

symptoms) for my son. I didn't have that problem, but my son definitely did. The

rage and meltdowns got a good bit worse for about the first 6-8mo. After that

(and with the addition of an anti-pyschotic) things gradually started calming

down. It's been just about a year since we added the anti-pyschotic so about a

year and a half on rifampin and zithromax for the bartonella. His meltdowns are

(knocking on wood!) almost 100% gone. In just less than 12mo he has gone from

daily rage 'episodes' severe enough that we literally had to call the police in

and only by the narrowest of margins avoided an inpatient pyschiatric stay (the

docs recommended a day program when we first started the anti-pyschotic, but I

wanted to give the new med a go first to see if we could avoid that and

thankfully we did!) to having a meltdown maybe once a month. These days the

meltdowns don't even come close to comparing to what they were a year ago,

either. He gets real mouthy, but hasn't had a real *physical* meltdown where

people or things have gotten hurt in months. The most physical it's been in the

last few months has been either running from us or breaking a pencil. Far cry

from throwing things like knives and hammers!

He's actually been doing so well we're attempting to cut back on the zithromax.

I'd like to get him off the Seroquel, but it is still quite obvious when he

misses a dose, so I can tell he still needs it. Our hope is that reducing the

blood level of the zithromax will let us ease up on the Seroquel, but still be

working to kill of the bart. We've got the bacteria load knocked WAY back, we're

just not 100% cleared yet.

32yo

mom to

Meagan, 13yo and 12yo. All infected with borrelia and bartonella and

probably half a dozen other tick-borne infections as well

[ ] My story and a question

Hi all,

Iâ€™ve been hovering here for a while and realized that I have not shared my

story. Our Lyme journey officially began last year when (after several years of

misdiagnosis and is some cases mistreatment by docs) my husband finally got

diagnosed. Long story short, heâ€™s more neurological with his symptoms and he

was having cognitive problems. For that reason, I went with him to his first 2

hour appt. with an ILADS doc to take notes, etc. Iâ€™m 44 and over the course of

my life Iâ€™d had little things here and there plus hypothyroidism. I was

maintaining pretty well with my thyroid meds (and a healthy diet, which I think

was my saving grace now that I look back). I would have what I call

â€˜episodesâ€™ where it felt like I was getting the flu and it always would

happen during stressful times!

Anyway, Iâ€™m sitting there in my husbandâ€™s Lyme appt listening to them go

thru â€˜the checklist of symptomsâ€™ and Iâ€™m thinking to myself, â€œyes, I

have that, yes that one too.â€ Finally I said something and they said they

thought they should test me! My test was positive and it showed they were

active! Was I ever floored! What is even more unbelievable is that Iâ€™ve had it

since I was either very small or I was born with it. Not sure which. My mom

wonâ€™t get tested. Anyway, I have a 4 and 7 year old that got it in utero from

me. They have had some problems since infancy and are now getting treatment from

Dr. !

It has been an uphill battle of the blind leading the blind in my house. Being

that Iâ€™m a stay at home mom and do most of the care givingâ€¦the brunt of dr

appts and medicine doling out falls on me. If I remember to dole out all of the

meds and supplements (which I donâ€™t LOL) Iâ€™m usually battling my aching

muscles and joints to do it. Thank God I went to school for health and nutrition

last year as itâ€™s help me help myself a lotâ€¦Iâ€™m functioning ok. Which is

better than some stories I hear. Donâ€™t get me wrong, my husband is a great man

but a very sick man who goes to work every day (when he shouldnâ€™t be) just so

we can have health insurance and $$ to pay for all of this insanity. Iâ€™m

actually looking for either an IT job or a health related job so he and I can

switch. He really needs to be at home healing.

Anyway, thatâ€™s my long winded story. My question is this. 3 our of 4 of us

have the emotional (anger/odc, etc) that goes along with Lyme. My daughter and I

have the brunt of that. My 7 year old daughter has what I call meltdowns that

resemble a 2 year old tantrum when something doesnâ€™t go right. Sheâ€™s a

little on the ocd side, so it could be something as small as something being out

of order (like a sequence of events at bedtime, etc). If I having a bad day, I

respond calmly at first but get angry very quickly when she starts slamming

doors and tearing up her room. Has anyone experienced this? Any advice on what

to do. It seems to get worse with her meds which makes me think itâ€™s a herx

reaction or maybe even yeast. She does crave the sugar! LOL me too for that

matter! LOL But we resist for the most part.

Thanks for listening. I donâ€™t get to go to Lyme support group meetings

because of scheduling and distance so I really donâ€™t have a support chainâ€¦

Kathy in VA.

February 20, 2011

chris,

maybe that is what helped me too, i have been on a combo of zithromax and

rifampin for well over a year, altho my igenex test did not show any

coinfections.

On Sat, Feb 19, 2011 at 10:20 PM, Casey <smurfytxmom@...>wrote:

>

> Your story is similar to my own, except I probably infected my husband who,

> thank goodness, is only mildly affected. My mother and I have positively

> traced the tick-borne soup back to her childhood at the very latest for

> sure, but we highly suspect it goes back to her grandmother's childhood. My

> grandmother just passed away this past Oct from a drug reaction we believe

> was caused by the tick-borne infections.

>

> The Lyme rage is (unfortunately!) quite real and we've dealt with it

> extensively here in my house. I had some issues with it when I first

> " crashed " a few years ago. My son, however, holds the record for worst case

> in our family...by FAR. Of course both my kids inheirted this stuff (as did

> myself and my siblings, and likely my mother and grandmother and their

> siblings, as I said). His rage issues started as a toddler at which point

> they were just very intense tantrums. As he aged, though, instead of things

> getting better they got worse. He would have meltdowns (we also use that

> term, lol) exactly like you describe, and for the silliest reasons as well.

> I can remember many over forming a letter incorrectly when writing. We're

> talking knock-down, drag-out meltdowns because his letter 'a' didn't look

> just the way he wanted it to. *sigh*

>

> For us the biggest thing that has helped (loooooooooong term) has been

> bartonella treatment. Short-term there hasn't been much we *could* do

> besides physically restraining him and just trying to survive the screaming,

> kicking, throwing, etc. A lot of times that was MUCH easier said than done,

> especially when I was at my sickest and didn't have the strength to pick up

> a coffee mug, let alone hold down a seriously out-of-control 70lb boy!

>

> Any of the antibiotics that cross the blood brain barrier help with the

> rage symptoms, but we've really seen the best results with those that also

> target bart. One thing, though... zithromax has probably been THE most

> helpful brain-wise for myself at least, and likely my son as well, but while

> it has been the best, it also brought about some REALLY intense herxing

> (worsening of symptoms) for my son. I didn't have that problem, but my son

> definitely did. The rage and meltdowns got a good bit worse for about the

> first 6-8mo. After that (and with the addition of an anti-pyschotic) things

> gradually started calming down. It's been just about a year since we added

> the anti-pyschotic so about a year and a half on rifampin and zithromax for

> the bartonella. His meltdowns are (knocking on wood!) almost 100% gone. In

> just less than 12mo he has gone from daily rage 'episodes' severe enough

> that we literally had to call the police in and only by the narrowest of

> margins avoided an inpatient pyschiatric stay (the docs recommended a day

> program when we first started the anti-pyschotic, but I wanted to give the

> new med a go first to see if we could avoid that and thankfully we did!) to

> having a meltdown maybe once a month. These days the meltdowns don't even

> come close to comparing to what they were a year ago, either. He gets real

> mouthy, but hasn't had a real *physical* meltdown where people or things

> have gotten hurt in months. The most physical it's been in the last few

> months has been either running from us or breaking a pencil. Far cry from

> throwing things like knives and hammers!

>

> He's actually been doing so well we're attempting to cut back on the

> zithromax. I'd like to get him off the Seroquel, but it is still quite

> obvious when he misses a dose, so I can tell he still needs it. Our hope is

> that reducing the blood level of the zithromax will let us ease up on the

> Seroquel, but still be working to kill of the bart. We've got the bacteria

> load knocked WAY back, we're just not 100% cleared yet.

>

> 32yo

> mom to

> Meagan, 13yo and 12yo. All infected with borrelia and bartonella

> and probably half a dozen other tick-borne infections as well

>

> [ ] My story and a question