Results are in

[Guest guest]

Hi y'all

Well I went to the Gastro Doc yesterday and I do not have Celiac YEAH!!!!!!

I do have a hietal hernia and Diverticulosis. So all in all its good. She

gave me the diet for the Diverticulosis and said that the no longer believe

that nuts or seeds can cause problems so I can just stay on my, Low salt,

Diabetic, Intersticial diet.. what a joy LOL at least I can still eat

BREAD... warm bream with butter is my passion.. Just thought I would let ya

know

Heidibug

[Guest guest]

DARA

call me..I will give you my phone number if you email me at finrussak@... OR

I would be happy to call you I have unlim long distance...I have much info re NJ

drs as well as what to do about your little one. I can also help you with the

Igenex results by emailing you detailed explanations.

Finette

[ ] Results are in

I just got the Igenex results for my 2 kids. We have an appt for my 6yo with a

LLMD and myself this Saturday, but just found out he will not see my 3yo, as he

does not see kids that young. I don't really understand the Igenex results, so

am looking to see if anyone can make sense of this.

My first question is, Does anyone have experience with a good doctor who treats

kids? I already put in a call to Dr , but am anticipating a long wait to

see him, I live in land and would ideally like to find someone closer by.

The doctor we are seeing this weekend is in New Jersey, and we are traveling

that far because he could give us the soonest appt, and he came personally

recommended. 3 others that came recommended in the Baltimore area are not taking

new patients. I know I can get a list off of the internet, but would rather go

by people's experiences than picking out of a hat.

For my daughter's results, it looks like she tested negative for co-infections.

Her western Blot IGM is postive, with 31kDa ++, 34kDa +, 41kDa IND. IGG says

negative but 41kDa ++, and there are 3 bands that say IND.

For my son, Western Blot IgM says negative, but 18kDa +, 41kDa ++, 83-93kDa IND.

IgG says negative, but 41kDa is +++ and three others are IND. His IgG for HME

is highat 1:320 titer.

SO, what I gather is that if there is only one band positive, the test result is

considered negative, but there is still evidence of lyme present that needs to

be treated. Is this right?

If anyone can help me make sense of this, I would appreciate it! It is hard to

wait til Saturday to understand it all.

Thanks, Dara

[Guest guest]

Id contact NatCapLyme , their Pres. Monte Skall is a good friend of mine and she

can help you--at this number and email and get their list of names of

Drs:703-821-8833; monte@...?

Ginger is a Nurse Practitioner and accordingly must work under a Drs supervision

?and Im unsure who that may be in DC area. She also has recently spent a bit of

time watching and shadowing Dr but none of us can be sure as to the extent

of that " training " .Monte may know these things,but most importantly she will

have a list of all possible Drs. Maybe you can find the same Dr for both kids (

or even all 3 of you) which would be easier on you.

I also have a list of a few Md support groups that are very reliable and sources

of great info. I will be happy to fwd them to you if you like!!.

FWIW I live in NJ and there are a few Drs Id avoid at all costs. If you like I

can talk with you about who you have an appt with so you dont end up wasting

time and money!!

As far as western blots:

1. theyre not sensitive or reliable enough to use as the sole basis to diagnose

(prove) Lyme or co infections

2. The bands reflect the different proteins found on or in a " bug " that your

immune system is reacting to--telling us that it recognizes that youve been

attacked by an enemy.

3.Every/each band isnt necessarily a neg or pos--it very much depends on WHICH

band is revealed. ?For example the 41kda band us NOT specific and many have that

one come up--its a flagella (tail) protein in spirochetes. We naturally have

spirochetes in our bodies and so having that band may mean that a non-Lyme spiro

got into your blood from lets say a gum sore or mouth cut, and the immune system

alarm went off. It cant/wont prove " Lyme " .

4. when Igenex or other labs report a test as " neg " even tho a few bands are in

fact " hot " --thats due to the CDC basis--by law they have to report that anything

less than the number and type that the CDC says defines " pos " as not pos --so

even IF there are a few of the bands that are absolutely specific to Lyme

spiro's come up--if theyre not the ones or of the number of bands CDC says--they

call it neg. and the dirty secret is that the cdc chooses which bands and the

numbers by the IDSA folks who were involved in vaccines several yrs ago--and

they chose to avoid cross reactions--and to make the vaccine marketable--which

after awhile it wasnt anyways.

accordingly--this misses many valuable bands as well as the fact that a few are

indicators of Lyme even if your body ignores some others--also there are bands

they dont even test for at this time that would find it more easily in some

folks!!! The cdc and labs are ignoring other important proteins!! politics!!!

5. " equivocal " means the test result itself is " maybe ,but not really positive "

and is used when there are IND results. thats means " indeterminate " or we cant

tell...maybe positive. Because the IND band is not absolutely " neg " .

6. When there are a few positive bands that are Lyme specific but not enough (

per CDC) thats not an " equivocal " result--thats a NON CDC, yet POSITIVE for

Lyme!!!

7. Its common to treat IND and Equivocals ?as well as Non-CDC positives since

its more likely you have Lyme and the damages of not treating may outweigh the

waiting.

8-as for your son: he has a weakly pos 18Kda, very pos 41 ( recall thats the

nonspecifc one so doesnt count as much but still counts since others are there);

and 83-93IND ( again recall that means " not exactly neg " )..AND most important to

me a very high HMS--thats Human Monocytic Ehrlichia--it would be extremely rare

for him to have Ehrlichia and not also Lyme since they piggy back...the total

pattern tells me its highly likely he DOES have " Tick Borne Illnesses " sometimes

called TBI's since its more than Lyme alone.

btw 18kda--flagellin protein ( more specific to Borrelia/Lyme)

?? ? ? 41 kda-flagellin ( some claim not as specific for Borrelia)

?? ? ? 83-kda- protein 83 very specific for Borrelia

?? ? ? 93-kda-protoplasmic cylinder antigen--specific for Borrelia

Im a developmental biologist and not a Dr so cant diagnose--I am explaining the

tests only. Also I have over 20 years experience as patient educator and

advocacy in Tick Illnesses.I would definitely pursue seeing a Dr for him!!

good luck

Finette Russak, M.S.

Science Educational Consultant

Lyme Disease Advocate

Support group Leader

original member of LDA-NJ ( now LDA)

member of lymeneteurope, lymeaid parents,many online and local support groups

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Re: [ ] Results are in

In land, you are not far from Washington DC. I think Ginger

Savely treats patients from there, and I believe she will treat both

your children. But to know for sure you have to call her. She is

great and has been doing this for a long time. Battled Lymes herself,

she is very compassionate and very much on top of the latest

treatments. She works closely with many other Lyme specialists around

the country including Dr. . Her office can also explain the

test results to you.

Your son " might " have what they call an equivocal result. In which

case there is controversy as how to perceive that test result. Some

think that it is as good as positive where others think it should be

taken somewhat negative. Or that you have been exposed to Lymes but

that it is not active in the system anymore. My son was equivocal and

I treated him anyway which resulted in an array of active symptomatic

flare ups at three weeks into his treatment and with continued

treatment throughout the year those symptoms subsided. Theory being

that we activated dormant spirochetes with the treatment and then the

treatment kills the bacteria. Dormant spirochetes will no cell wall

have to become active in order for the cephlasporine antibiotics can

kill the bacteria with a cell wall.

This is her info in San Francisco but I remember reading that she was

treating patients in DC also: