Re: Introduction & Questions from Liz in CA

[Guest guest]

Definitely get your son tested. If he's had Lyme, it could explain many of his

issues.

You don't have to have a positive Lyme test to be diagnosed and treated. Your

doctor is going on symptoms, which is a completely legitimate way to proceed.

It's typical for doctors to treat for at least a year or two, sometimes longer.

(My process was different: I went 4-5 months on a combo, took a month off, then

switched drugs and went another 4-5 months. This went on for almost two years.)

Most docs like to switch up the antibiotics to prevent resistance and hit the

Lyme in its various forms.

Stay on top of the yeast issues. With the antibiotics, they'll get worse. Many

of us go on total no-carb diets, which help. I was on Diflucan *and* Nystatin

every day for the entire 22 months. Also: the probiotics are absolutely

essential to preventing really bad side effects from the abx.

It is a lot to mentally digest, especially if you've got brain fog. With any

luck, that will improve over time.

Sara

On Apr 12, 2011, at 3:35 23PM, lizzzander wrote:

> Hi All.

>

> My name is Liz, Thank you for including me in your group. I am new here and

this

> is my introduction, as well as I am in need of some advice. After being ill

> without a diagnosis other than CFS, FM, food intolernaces and MCS for the last

> 15 years, I finally got some results and found a doctor that understands Lyme

> disease and its many components. I met with her in Feb. and have completed

many

> tests and received the results last week. However, I am feeling physically

awful

> and on overwhelm trying to decipher all the test results and the lack of clear

> explanation from the doctor, or maybe it was my lack of clear thinking when I

> met with her. I guess I don't have the CDC's definition of Lymes Disease, but

> according to my doctor she thinks that I do have Lyme disease. I am hoping

that

> a few of you might be able to explain to me what my test results mean, what my

> diagnosis's really are and why my doctor prescribed what she did. As well as,

> what long term treatment of Lymes/Bartonella really means? My doctor said that

> we should treat with antibiotics for 4 months and then retest if the lab

results

> indicate the antibiotics are indeed fighting the Lyme, I should continue with

> Lyme treatments including antibiotics for anywhere from 18 months to 3 years

>

> I am 46 years old. I live in Monterey, California, I am widowed, on disability

> and the mother of two children. My youngest (age 17) has Non Verbal Learning

> Disorder (an Autism Specrtum Disorder similar to Asperger's Syndrome), MCS,

> Anxiety, ADHD, Allergies, Food intolerances, Yeast problems and Learning

> Dis-abilities. I suffer from weird seizure like episodes, rashes, severe

muscle

> spasms, joint inflammation and pain, spine, hip and neck stiffness and pain,

> sleep issues, food intolerances, chemical intolerances, face, chest and upper

> arms get hot flashes, cognitive difficulties, extreme fatigue, exercise makes

> it worse, headaches, chronic peeling lower lip, and was just treated for a

> chronic systemic yeast infection of the blood (Diflucan for 60 days),

> dizziness, etc.

>

> So my new doctor ran a bunch of tests and these are the results of concern:

> --------------------

> Diagnos-Tech, Inc

>

> GP3 - Bacterial Stool Culture:

> Pathogens/Bacterial Overgrowth detected:

> 1. Kiebseilla/Enterobacter/Serratia Group - Moderate

> 2. Alpha Hemolytic Streptococcus - Rare

>

> MB2 - Total Intestinal SIgA (Stool): 121 (low: <400mg% dry wt)

>

> MB4 - Alpha Anti-Chymotrypsin (Stool): 121 (Mild/Distal Colitis 100-180)

>

> FI4 - Gliadin Ab, SIgA (Saliva): 15 Borderline

> --------------------

> Hunter Labs

>

> Complement Component 3A

> C3a Level: result 258 (Range 0-940)

>

> Complement Component 4A

> C4a Level: result 9026 , ABN High (Range 0-2830)

>

> Mycoplasma Pneumoniae Ab, IgG = 1.25 (greater than .33 is positive)

>

> Mycoplasma Pneumoniae Ab, IgM = 0.00 (Negative)

> -----------------------

>

> Doctors Data

>

> Hair Elements:

> Arsenic – High

> Bismuth - High

> Titanium - High

> Sodium - Low

> Potassium - Low

> Copper - Normal

> Zinc - High

> Cobalt - Low

> Boron - Low

> Lithium - Low

> -------------------------

>

> IGeneX, Inc.

>

> IFA, B Burgdorferi G/M/A: Result <40 (negative)

>

> Lyme IgM Western Blot:

> 41 kDa - IND

> 83-93 kDa - IND

>

> Lyme IgG Western Blot:

> 39 kDa - IND

> 41 kDa - +

>

> B. microti IFA (G/M):

> B. microti IgM - <20

> B. Microti IgG - <40

>

> B. duncani IFA (G/M):

> B. duncani IgM - <20

> B. duncani IgG - <40

>

> HME Panel (monocytic):

> E. chaffeensis IgM - <20

> E. chaffeensis IgG - <40

>

> B. henselae IFA (G/M):

> B. henselae IgM - <20

> B. henselae IgG - 40 (positive)

> ----------------------

>

> So, this is what I heard my doctor say:

> 1. I most likely have Lyme Disease (Treat for 4 months with antibiotics and

then

> retest)

> 2. I have Bartonella

> 3. I am positive for Mycoplasma (A marker for CFS, FM and Gulf War illness?)

> 4. My C4 test indicates that I have a chronic infection(s)

> 5. My C3 test indicates that I do not have an autoimmune disease (yet)

> 6. I have a rare form of Streptococcus and I am a carrier (?)

> 7. I have markers for past exposure to Epstein Barr Virus

>

> This is what she prescribed, but she didn't explain why or what was supposed

to

> treat what.

>

> 1. Probiotics

> 2. Florastor

> 3. Fresh Garlic

> 4. No Gluten

> 5. Vitamin B12 shots every week for 4 weeks

> 6. Colostrum PCHF(New Zealand)

> 7. NDF Factors (Chlorella and other stuff)

> 8. Levaquin 500 mg daily for 21 days

> 9. Minocin 100 mg 2x daily

> 10. SSKI – 2 drops daily

>

> She made it sound like I should start all of these things at once. Which goes

> against everything that I have been taught... adding one thing at a time, so

you

> will know what it is, if you have a bad reaction. I don't know which things to

> do first or in what order. My thoughts are to do the probiotics and the

> colostrum first for a week, then add in the NDF for a week then add the

> antibiotics. But, I am unsure if it is a good idea to start both antibiotics

at

> the same time and if not which to start first. The SSKI I am not sure I should

> do at all. I am extremely sensitive to medications and am allergic to nearly

> every pain medication and muscle relaxer except for Ibuprofen and Valium, but

> neither of these can touch the pain when it gets bad

>

> I know that this is a lot of information and I would really appreciate any

help

> that you can offer. She also said that I may get worse before I get better,

due

> to Herxheimer reactions. I can't imagine feeling any worse than I do right now

> and this is giving me great anxiety. Also, if I am not being clear in my

request

> for information, please ask questions, my thoughts are a bit foggy.

>

> Lastly, Is it wise to get my children checked for Lymes disease now that I

have

> been diagnosed with it?

>

> Thank you so much in advance for any help or clarification that you can offer,

>

> Liz

>

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

I have no advice for your results but please have you son on the ASD tested

too. & nbsp;

Over 90 percent with ASD have Lyme.

Sent from my Palm Pre on the Now Network from Sprint

On Apr 12, 2011 9:45 PM, lizzzander & lt;lizzander@... & gt; wrote:

& nbsp;

Hi All.

My name is Liz, Thank you for including me in your group. I am new here and this

is my introduction, as well as I am in need of some advice. After being ill

without a diagnosis other than CFS, FM, food intolernaces and MCS for the last

15 years, I finally got some results and found a doctor that understands Lyme

disease and its many components. I met with her in Feb. and have completed many

tests and received the results last week. However, I am feeling physically awful

and on overwhelm trying to decipher all the test results and the lack of clear

explanation from the doctor, or maybe it was my lack of clear thinking when I

met with her. I guess I don't have the CDC's definition of Lymes Disease, but

according to my doctor she thinks that I do have Lyme disease. I am hoping that

a few of you might be able to explain to me what my test results mean, what my

diagnosis's really are and why my doctor prescribed what she did. As well as,

what long term treatment of Lymes/Bartonella really means? My doctor said that

we should treat with antibiotics for 4 months and then retest if the lab results

indicate the antibiotics are indeed fighting the Lyme, I should continue with

Lyme treatments including antibiotics for anywhere from 18 months to 3 years

I am 46 years old. I live in Monterey, California, I am widowed, on disability

and the mother of two children. My youngest (age 17) has Non Verbal Learning

Disorder (an Autism Specrtum Disorder similar to Asperger's Syndrome), MCS,

Anxiety, ADHD, Allergies, Food intolerances, Yeast problems and Learning

Dis-abilities. I suffer from weird seizure like episodes, rashes, severe muscle

spasms, joint inflammation and pain, spine, hip and neck stiffness and pain,

sleep issues, food intolerances, chemical intolerances, face, chest and upper

arms get hot flashes, cognitive difficulties, extreme fatigue, exercise makes

it worse, headaches, chronic peeling lower lip, and was just treated for a

chronic systemic yeast infection of the blood (Diflucan for 60 days),

dizziness, etc.

So my new doctor ran a bunch of tests and these are the results of concern:

--------------------

Diagnos-Tech, Inc

GP3 - Bacterial Stool Culture:

Pathogens/Bacterial Overgrowth detected:

1. Kiebseilla/Enterobacter/Serratia Group - Moderate

2. Alpha Hemolytic Streptococcus - Rare

MB2 - Total Intestinal SIgA (Stool): 121 (low: & lt;400mg% dry wt)

MB4 - Alpha Anti-Chymotrypsin (Stool): 121 (Mild/Distal Colitis 100-180)

FI4 - Gliadin Ab, SIgA (Saliva): 15 Borderline

--------------------

Hunter Labs

Complement Component 3A

C3a Level: result 258 (Range 0-940)

Complement Component 4A

C4a Level: result 9026 , ABN High (Range 0-2830)

Mycoplasma Pneumoniae Ab, IgG = 1.25 (greater than .33 is positive)

Mycoplasma Pneumoniae Ab, IgM = 0.00 (Negative)

-----------------------

Doctors Data

Hair Elements:

Arsenic – High

Bismuth - High

Titanium - High

Sodium - Low

Potassium - Low

Copper - Normal

Zinc - High

Cobalt - Low

Boron - Low

Lithium - Low

-------------------------

IGeneX, Inc.

IFA, B Burgdorferi G/M/A: Result & lt;40 (negative)

Lyme IgM Western Blot:

41 kDa - IND

83-93 kDa - IND

Lyme IgG Western Blot:

39 kDa - IND

41 kDa - +

B. microti IFA (G/M):

B. microti IgM - & lt;20

B. Microti IgG - & lt;40

B. duncani IFA (G/M):

B. duncani IgM - & lt;20

B. duncani IgG - & lt;40

HME Panel (monocytic):

E. chaffeensis IgM - & lt;20

E. chaffeensis IgG - & lt;40

B. henselae IFA (G/M):

B. henselae IgM - & lt;20

B. henselae IgG - 40 (positive)

----------------------

So, this is what I heard my doctor say:

1. I most likely have Lyme Disease (Treat for 4 months with antibiotics and then

retest)

2. I have Bartonella

3. I am positive for Mycoplasma (A marker for CFS, FM and Gulf War illness?)

4. My C4 test indicates that I have a chronic infection(s)

5. My C3 test indicates that I do not have an autoimmune disease (yet)

6. I have a rare form of Streptococcus and I am a carrier (?)

7. I have markers for past exposure to Epstein Barr Virus

This is what she prescribed, but she didn't explain why or what was supposed to

treat what.

1. Probiotics

2. Florastor

3. Fresh Garlic

4. No Gluten

5. Vitamin B12 shots every week for 4 weeks

6. Colostrum PCHF(New Zealand)

7. NDF Factors (Chlorella and other stuff)

8. Levaquin 500 mg daily for 21 days

9. Minocin 100 mg 2x daily

10. SSKI – 2 drops daily

She made it sound like I should start all of these things at once. Which goes

against everything that I have been taught... adding one thing at a time, so you

will know what it is, if you have a bad reaction. I don't know which things to

do first or in what order. My thoughts are to do the probiotics and the

colostrum first for a week, then add in the NDF for a week then add the

antibiotics. But, I am unsure if it is a good idea to start both antibiotics at

the same time and if not which to start first. The SSKI I am not sure I should

do at all. I am extremely sensitive to medications and am allergic to nearly

every pain medication and muscle relaxer except for Ibuprofen and Valium, but

neither of these can touch the pain when it gets bad

I know that this is a lot of information and I would really appreciate any help

that you can offer. She also said that I may get worse before I get better, due

to Herxheimer reactions. I can't imagine feeling any worse than I do right now

and this is giving me great anxiety. Also, if I am not being clear in my request

for information, please ask questions, my thoughts are a bit foggy.

Lastly, Is it wise to get my children checked for Lymes disease now that I have

been diagnosed with it?

Thank you so much in advance for any help or clarification that you can offer,

Liz

[Guest guest]

Welcome to the group. I did not see any blood work on vitamin D3. Most

likely that is also low and you might want it checked. Most folks with

Chronic Lyme have low D3 as do many healthy people too! My wife tested at 3

when healthy range is consider 35-75. She takes 10,000 IU daily of Vitamin

D3 to help.

It is extremely rare to cure Chronic Lyme in only months. Once its in the

body it tends to be extremely tenacious.

As far as your doctors recommendations you can ask what their experience has

been with other patients and Chronic Lyme etc.

I know for my wife when she would try a protocol it was always started

slowly or the Herxing would be extreme. Look up Jarisch-Herxheimer reaction.

You get far worse before you get better and it can be more unpleasant than

the disease at times!

I notice you are also low on sodium. You might want to consider the salt/c

protocol. Many folks with Chronic Lyme use it as their number attack on the

disease. There is a really excellent group for this protocol and one

of the best groups I know of for Chronic Lyme.

lymestrategies

I have a lot of good information I have collected in the 4+ years helping my

wife get her Chronic Lyme into remission. You can get a free copy at my

website below.

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

> [ ] Introduction & Questions from Liz in CA

>

> Hi All.

>

> My name is Liz, Thank you for including me in your group. I

> am new here and this is my introduction, as well as I am in

> need of some advice. After being ill without a diagnosis

> other than CFS, FM, food intolernaces and MCS for the last

> 15 years, I finally got some results and found a doctor that

> understands Lyme disease and its many components. I met with

> her in Feb. and have completed many tests and received the

> results last week. However, I am feeling physically awful and

> on overwhelm trying to decipher all the test results and the

> lack of clear explanation from the doctor, or maybe it was my

> lack of clear thinking when I met with her. I guess I don't

> have the CDC's definition of Lymes Disease, but according to

> my doctor she thinks that I do have Lyme disease. I am hoping

> that a few of you might be able to explain to me what my test

> results mean, what my diagnosis's really are and why my

> doctor prescribed what she did. As well as, what long term

> treatment of Lymes/Bartonella really means? My doctor said

> that we should treat with antibiotics for 4 months and then

> retest if the lab results indicate the antibiotics are indeed

> fighting the Lyme, I should continue with Lyme treatments

> including antibiotics for anywhere from 18 months to 3 years

>

> I am 46 years old. I live in Monterey, California, I am

> widowed, on disability and the mother of two children. My

> youngest (age 17) has Non Verbal Learning Disorder (an Autism

> Specrtum Disorder similar to Asperger's Syndrome), MCS,

> Anxiety, ADHD, Allergies, Food intolerances, Yeast problems

> and Learning Dis-abilities. I suffer from weird seizure like

> episodes, rashes, severe muscle spasms, joint inflammation

> and pain, spine, hip and neck stiffness and pain, sleep

> issues, food intolerances, chemical intolerances, face, chest

> and upper arms get hot flashes, cognitive difficulties,

> extreme fatigue, exercise makes it worse, headaches, chronic

> peeling lower lip, and was just treated for a chronic

> systemic yeast infection of the blood (Diflucan for 60 days),

> dizziness, etc.

>

> So my new doctor ran a bunch of tests and these are the

> results of concern:

> --------------------

> Diagnos-Tech, Inc

>

> GP3 - Bacterial Stool Culture:

> Pathogens/Bacterial Overgrowth detected:

> 1. Kiebseilla/Enterobacter/Serratia Group - Moderate 2. Alpha

> Hemolytic Streptococcus - Rare

>

> MB2 - Total Intestinal SIgA (Stool): 121 (low: <400mg% dry wt)

>

> MB4 - Alpha Anti-Chymotrypsin (Stool): 121 (Mild/Distal

> Colitis 100-180)

>

> FI4 - Gliadin Ab, SIgA (Saliva): 15 Borderline

> --------------------

> Hunter Labs

>

> Complement Component 3A

> C3a Level: result 258 (Range 0-940)

>

> Complement Component 4A

> C4a Level: result 9026 , ABN High (Range 0-2830)

>

> Mycoplasma Pneumoniae Ab, IgG = 1.25 (greater than .33 is positive)

>

> Mycoplasma Pneumoniae Ab, IgM = 0.00 (Negative)

> -----------------------

>

> Doctors Data

>

> Hair Elements:

> Arsenic - High

> Bismuth - High

> Titanium - High

> Sodium - Low

> Potassium - Low

> Copper - Normal

> Zinc - High

> Cobalt - Low

> Boron - Low

> Lithium - Low

> -------------------------

>

> IGeneX, Inc.

>

> IFA, B Burgdorferi G/M/A: Result <40 (negative)

>

> Lyme IgM Western Blot:

> 41 kDa - IND

> 83-93 kDa - IND

>

> Lyme IgG Western Blot:

> 39 kDa - IND

> 41 kDa - +

>

> B. microti IFA (G/M):

> B. microti IgM - <20

> B. Microti IgG - <40

>

> B. duncani IFA (G/M):

> B. duncani IgM - <20

> B. duncani IgG - <40

>

> HME Panel (monocytic):

> E. chaffeensis IgM - <20

> E. chaffeensis IgG - <40

>

> B. henselae IFA (G/M):

> B. henselae IgM - <20

> B. henselae IgG - 40 (positive)

> ----------------------

>

> So, this is what I heard my doctor say:

> 1. I most likely have Lyme Disease (Treat for 4 months with

> antibiotics and then

> retest)

> 2. I have Bartonella

> 3. I am positive for Mycoplasma (A marker for CFS, FM and

> Gulf War illness?) 4. My C4 test indicates that I have a

> chronic infection(s) 5. My C3 test indicates that I do not

> have an autoimmune disease (yet) 6. I have a rare form of

> Streptococcus and I am a carrier (?) 7. I have markers for

> past exposure to Epstein Barr Virus

>

> This is what she prescribed, but she didn't explain why or

> what was supposed to treat what.

>

> 1. Probiotics

> 2. Florastor

> 3. Fresh Garlic

> 4. No Gluten

> 5. Vitamin B12 shots every week for 4 weeks 6. Colostrum

> PCHF(New Zealand) 7. NDF Factors (Chlorella and other stuff)

> 8. Levaquin 500 mg daily for 21 days 9. Minocin 100 mg 2x

> daily 10. SSKI - 2 drops daily

>

> She made it sound like I should start all of these things at

> once. Which goes against everything that I have been

> taught... adding one thing at a time, so you will know what

> it is, if you have a bad reaction. I don't know which things

> to do first or in what order. My thoughts are to do the

> probiotics and the colostrum first for a week, then add in

> the NDF for a week then add the antibiotics. But, I am unsure

> if it is a good idea to start both antibiotics at the same

> time and if not which to start first. The SSKI I am not sure

> I should do at all. I am extremely sensitive to medications

> and am allergic to nearly every pain medication and muscle

> relaxer except for Ibuprofen and Valium, but neither of these

> can touch the pain when it gets bad

>

> I know that this is a lot of information and I would really

> appreciate any help that you can offer. She also said that I

> may get worse before I get better, due to Herxheimer

> reactions. I can't imagine feeling any worse than I do right

> now and this is giving me great anxiety. Also, if I am not

> being clear in my request for information, please ask

> questions, my thoughts are a bit foggy.

>

> Lastly, Is it wise to get my children checked for Lymes

> disease now that I have been diagnosed with it?

>

> Thank you so much in advance for any help or clarification

> that you can offer,

>

> Liz

>

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of

> sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

Hi Sara, Robyn and

Thank you all very much for your responses. I will get my two children tested as

soon as I can afford to do so... it is sooo expensive! I think it is important

also.

I had no idea that 90% of ASD children had Lyme. Are there any links that you

could share that demonstrate that. I would liek to share it with some mom's that

have ASD kids.

I believe that they tested my Vit D awhile back and it was normal, but I will

recheck those results.

I will keep reading and trying to absorb... this is a very confusing medical

condition and I feel pretty lost at the moment.

Thank you all for your replies,

Liz