Re: New Member Granddaugter with possible lymes

[Guest guest]

Hi there --

First of all, I am very sorry for all you are going through.

To answer your question, Lyme can progress very quicklyto Neurological Lymes,

within a month or two of infection (or reinfection -- my daughter has congenital

Lyme that presented with a whole host of autism spectrum issues, and then she

got the foot and joint pain, headaches etc. after a tick bite at age 10 --

that's when she was diagnosed).

You need to get a Western Blot test from Igenex and you need to demand to see

the test results. Don't just take the doctor's word for it. I say that because

my older daughter's test was equivoval and they told me it was negative

(literally true, but didn't tell me what I really needed to know, namely that

she tested indeterminate on some Lyme-specific bands, suggesting that she did

have the diesease). we lost 4 years before diagnosis as a result of relying on

that false information.

I hope that helps. There are some other great Lyme literate doctors you could

go to if this one is not right for you.

Again, so sorry you are going through this. Glad that you found this list. I

find the people on it incredibly knowledgeable and supportive.

Warmly,

Natasha

________________________________

From: PeggyR <rpggyr@...>

Sent: Sun, October 3, 2010 3:29:46 PM

Subject: [ ] New Member Granddaugter with possible lymes

Hello everyone,

I raise an autisitc 15 yer old granddaughter who I beleive has lymes. I do nt

remeber a tic, nor does she. We are in Rockport Mass and the tics this year were

horrific. I was pulling two and three off my dog weverytime he went out. I

myself had lymes last October. Lucky for me I found the tic on my back. I was

having headaches ,exhaustion, stiff neck, and swollen glad for about 10 days.

Then I found the tic. I immediately calle th Doc and he wanted me to get a blood

test. I said forget it, know how unreliable they are and since I was having

sympoms demanded 30 days of doxy. I was lucky.

My granddaughter started to complain about pain in the bottom of her feet and

tingling in her toes. She is also being treated for hypo thyroid and a recent

saliva test for adrenals came back positive for gluten sensitivity. The tingling

in her toes had me concerned so I called her Doc and wanted lots of blood tests

taken. He is out of stste and also specializes in Lymes. I asked if he would

frun the tests. He said yes and todl me to put her back on gluten to do furhter

testing on gluten allergy. He also ordered the Elisha and th WB for lymes. Well

lst Tuesday was the morning of the bood test. When she got up she was haveing

trouble walking, really off balance, and vision problems. She was also getti g

car sick when we drove to the hospital. A few days befdore she awaoke in teh

middle of the night in terrible pain both bootoms of ehr feet and her right

knee. She told me it felt like bees were stinging her feet. I ahd to give her 3

advil so she could get to sleep. The last two months she was been two weeks late

for her period. This month thr day she got it she could not even get out of bed.

I have an appt with the doctor on 10/23 to go over the blood work but when she

began to have double vision I paniced and called him. He was not in (this past

Fri) and was told to call back Monday. I told teh receptionist about her vision

trouble and I was scared to death. About twnty minutes later a call came t my

cell. I didn't answer but listend to the message and it was the doc telling e to

take her to the ER if I had to an he may need to refer her to a neurologist. I

was balistic. I called him right back and he answered. I told him I felt my

granddaughter had lymes and it was presenting as neuro. I did not want to wait

another three weeks to see him. He told me to come to his office on Monday. I

then said look your a Lyme specialist. I know the tests are not always

conclusive. I was very to the point and aksed am I coming up there for nothing

or are you going to eval her on symptoms and start treatment. He said he w!

ould evaluate her and do a neuro exam. He said due to the foot and knee symptoms

of pain and the tingling it sound like it may well be lymes. My question for

anyone on this group is this. Does early stage lymes present with these types of

sympoms. I am scared to death. Her knee and foot pain are gone, so is the

tingling in her feet and her vision is fine now but she is saying her legs feel

like there are 100lbs, and she is not dizzy but off balance. I so frighetened.

I've spent the whole weekend researching and I'm thinking of the worst. I have

not slept for over a week. Any input would be appreciaited.

[Guest guest]

>

> Hello everyone,

> I raise an autisitc 15 yer old granddaughter who I beleive has lymes. I do nt

remeber a tic, nor does she. We are in Rockport Mass and the tics this year were

horrific. I was pulling two and three off my dog weverytime he went out. I

myself had lymes last October. Lucky for me I found the tic on my back. I was

having headaches ,exhaustion, stiff neck, and swollen glad for about 10 days.

Then I found the tic. I immediately calle th Doc and he wanted me to get a blood

test. I said forget it, know how unreliable they are and since I was having

sympoms demanded 30 days of doxy. I was lucky.

>

> My granddaughter started to complain about pain in the bottom of her feet and

tingling in her toes. She is also being treated for hypo thyroid and a recent

saliva test for adrenals came back positive for gluten sensitivity. The tingling

in her toes had me concerned so I called her Doc and wanted lots of blood tests

taken. He is out of stste and also specializes in Lymes. I asked if he would

frun the tests. He said yes and todl me to put her back on gluten to do furhter

testing on gluten allergy. He also ordered the Elisha and th WB for lymes. Well

lst Tuesday was the morning of the bood test. When she got up she was haveing

trouble walking, really off balance, and vision problems. She was also getti g

car sick when we drove to the hospital. A few days befdore she awaoke in teh

middle of the night in terrible pain both bootoms of ehr feet and her right

knee. She told me it felt like bees were stinging her feet. I ahd to give her 3

advil so she could get to sleep. The last two months she was been two weeks late

for her period. This month thr day she got it she could not even get out of bed.

I have an appt with the doctor on 10/23 to go over the blood work but when she

began to have double vision I paniced and called him. He was not in (this past

Fri) and was told to call back Monday. I told teh receptionist about her vision

trouble and I was scared to death. About twnty minutes later a call came t my

cell. I didn't answer but listend to the message and it was the doc telling e to

take her to the ER if I had to an he may need to refer her to a neurologist. I

was balistic. I called him right back and he answered. I told him I felt my

granddaughter had lymes and it was presenting as neuro. I did not want to wait

another three weeks to see him. He told me to come to his office on Monday. I

then said look your a Lyme specialist. I know the tests are not always

conclusive. I was very to the point and aksed am I coming up there for nothing

or are you going to eval her on symptoms and start treatment. He said he would

evaluate her and do a neuro exam. He said due to the foot and knee symptoms of

pain and the tingling it sound like it may well be lymes. My question for anyone

on this group is this. Does early stage lymes present with these types of

sympoms. I am scared to death. Her knee and foot pain are gone, so is the

tingling in her feet and her vision is fine now but she is saying her legs feel

like there are 100lbs, and she is not dizzy but off balance. I so frighetened.

I've spent the whole weekend researching and I'm thinking of the worst. I have

not slept for over a week. Any input would be appreciaited.

>

HI,

My heart goes out to you and all you are going through. I am so sorry for your

anguish. Your letter reminds me of how I felt when my daughter came back with a

positive Western Blot from Igenex after 3 years of going to specialists and

being told her symptoms were all in her head....Desperate!! I went into crazy

mom mode and didn't rest until I found an LLMD to take care of my daughter.

As a nurse, I can understand why the doctor wanted to do a neuro exam, in case

something else is possibly causing the neuro symptoms. However, Lyme can

definitely cause neuro problems. How did the appointment go? What were the

results of her tests? Remember, unless the Western Blot was done by a lab

called Igenex, it probably didn't include certain specific bands indicative of

Lyme. I know some people who had 6 or 7 WB's and it wasn't until getting one

from Igenex that it showed up positive.

The pain that your granddaughter felt in the soles of her feet could mean she

was also infected with Bartonella, a co-infection often seen with Lyme. Foot

pain is a classic sign of Bartonella.

I wish you and your granddaughter the best of luck in finding the care she needs

and deserves. Please let us on the list know how you make out.

[Guest guest]

Well I thought I'd check in to give everyone an update and ask a few questions.

Both My grandaughters WB and came back negative. Not surprised. However

she did show one postive in Band 58. She never got the referral to the

Neurologist like the Lyme doc asked for. I'm not that disappointed though becsue

I did not want to spend six months chasing symptoms and ending up wiht a wrong

DX. Her pediatrician did start her on 100mg Doxy BID because the Lyme Doc told

him if he did not get her to a neurologist this week he was going to begin to

treat because of the symptoms. Some symptoms are better already. Her balance is

still a little of but she is not staggering like she was. All numbness and

tingling is gone. She claims her motor skills in her right hand are better. The

week that I took her to the pediatrician when her symptoms were the worst she

also had periods were her speech was very slurred, and she was very giddy. That

symptom seemed to pass as well but this Tuesday was the third week of doxy and

that symptom is back. She is talking like she is drunk and salivating a lot.

Could this be a herx reaction? She also claims that periodically she feel

vibrational shocks on her left side that last a few seconds. Her Lyme doc that

we saw this Tuesday said that was a very classic lyme symptom. Another good sign

was wehn we drove to the Lyme Doc who is out of State (1 hour ride) she did not

get car sick. It was funny because she asked me to close the car windows because

she claimed the pressure of the air was making her ears feel plugged. I have to

see her Lyme Doc again in 6 weeks. I mentioned sending out some tests to Igenex.

I would just feel a lot better if I had a definate Dx.

>

> Hello everyone,

> I raise an autisitc 15 yer old granddaughter who I beleive has lymes. I do nt

remeber a tic, nor does she. We are in Rockport Mass and the tics this year were

horrific. I was pulling two and three off my dog weverytime he went out. I

myself had lymes last October. Lucky for me I found the tic on my back. I was

having headaches ,exhaustion, stiff neck, and swollen glad for about 10 days.

Then I found the tic. I immediately calle th Doc and he wanted me to get a blood

test. I said forget it, know how unreliable they are and since I was having

sympoms demanded 30 days of doxy. I was lucky.