Introduction & Questions from Liz in CA

[Guest guest]

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:

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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

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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)

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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