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Pmom:

 

I would suggest running the CD 57 blood test on yourself. This is often used for lyme patients (adults only) who are showing borderline or inconclusive results. Many lyme doctors consider a number lower than 100 to be indicative of lyme disease. Again, this test is not used for children.

 

My concern for you is that you still have vague symptoms and lyme left untreated can come back as a more debilitating disease years later.

 

 

 

Elizabeth

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UGH!! Okay..my last western blot came back negative with only IGG band 41 present. (2 years ago with my crazy/bad, evolving symptoms...all 3 CDC bands IGM were positive, positive Elisa, but negative, no bands IGG)

 

However, reading that story freaked me out....I can't begin to explain how similiar our stories are...even my hasband was shocked.

 

I have the Igenex box, like I said...I was going to use it on my son in Sept....but, I decided to go get the draw done for myself TODAY......I'll just order another one for my son.

 

Might I add that my husband is an avid hunter and got a deer not too long before my symptoms started. :blink: He said the deer was covered with tics :o ..he even caught one crawling on himself. Not attached! He brought the deer home for all of us to see!

We did.....got some good pics with it. I washed his clothes...drove the same truck he sat in with his hunting clothes...... :ph34r:

Still not convinced it is/was Lyme!! :huh:

 

Who is screaming at the computer/me right now??!!! :lol:

 

By the way...I am MUCH MUCH better now...not 100%, but way better!!!!

Edited by P.Mom
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No screaming at the computer at all........ I am so HAPPY you are testing again and especially through Igenex. I too am heading down to the LAB today for my LYME test. We'll be pacing back and forth together. I should know my results on September 20th.

 

By the way, my girlfriend has been running some LABS on herself high in heavy metals, high liver enzymes all indicative of LYME. She won't be testing herself until she see Dr. S again though and that is the end of September.

 

-Wendy

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Are headaches indicative of a herx reaction? Dd was on a 20 day course of Biaxin in March. During the course she had improvement in her PANDAS symptoms, but headaches were VERY BAD. They started on day 2 of the Biaxin, and were soon accompanied by tummy aches. Also, by day 18 she had a return of a "mystery" itchy, bumpy rash on her knees & elbows that she's now had 4 times (lasting weeks each time) over the past year. The dermatologist was not able to diagnose the rash. A friend mentioned that at least the headaches could have been a herx reaction. Does any of this sound like herx?

 

I should mention that she's been on Azith and Omnicef since then and has not had the dramatic headaches that she had while on Biaxin. She did, however, have a return of the elbow/knee mystery rash after starting Omnicef in July. She's still on the Omnicef and the rash has now disappeared.

 

Dd does have a history of a bite 2 years ago. We don't know what bit her, but it did get very hot and swollen. I questioned Lyme at the time, as I felt there was a faint bullseye around it, but the doctors told me that if it was Lyme the bullseye would be dark. They diagnosed her with cellulitis and gave her a 10 day course of antibiotics. The bite got better, and I really never thought about Lyme again until her PANDAS diagnosis this year. In March she had a Western Blot by Quest Diagnostics and it came back positive for band 41 IgM & IgG, as well as band 66 IgG. We just sent off her blood to Igenex yesterday, so hopefully we'll have more answers soon.

Edited by worriedmommy
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SF Mom.....I had those tests done, too. I told ya...I did about everything under the sun!

No high metals...... liver enzymes, ESR, CRP always normal, everything always normal...even at my worst!! Well, except the Lyme Elisa and IGM western blot. :blink:

 

Remember, this came after a very tragic event in my life.....coupled with two PANDAS kids......then I was told I had a hole in my heart (which turned out I don't ) husband had lost his job (now got a better one)....my always low blood pressure and low level anxiety went through the roof........could have weakened my immune system and let EBV run ramped!!??? :wacko:

 

Well, anyway, we'll see...I am going to get the draw now after I round up the boys.

 

Kelly

 

 

You know what else I just remembered.....it also started after my husband had a bout of strep!!! I was never tested or had symptoms!! :o This is no joke! I wonder......

Edited by P.Mom
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Yes my son (who had IVIG treatments) and daughter (who did not have IVIG treatments) both have positive and indeterminate band responses on some of the double starred bands (their results are fairly similar). I believe I've posted about this previously and you can read further into my history. We are also doing additional DNA testing via the urine which is also available through Igenex and or any LLMD to further resolve/determine the presence of LYME or co-infections by the DNA that is shed into the urine. In addition we are testing for allergies, molds, parasites, additional bacteria via the stool, initial penicillin response (rash from amoxicillin) and potentially for mycoplasma again in the future etc, etc, etc. I will know all the results on September 20th and will openly post them to the forum at that time.

 

The reason I mention the DNA testing is because it very possible a child that was passed LD/co-infections while utero may not to produce antibodies to the bacteria because it is not recognized as foreign to the body and there are other alternative methods for testing to confirm a diagnoses other than antibodies for LYME.

 

I have never stated my family has LYME Disease or a co-infection YET nor has the LLMD that we are working stated its LYME for our family. HE DID SAY ITS OBVIOUS our family has an 'illness' and will help to investigate further. AND, he feels he can bring our son to lasting recovery that does not require long term antibiotics once the HYPER IMMUNE response stops. Out of all the Dr.'s I have met our LLMD is by far the most versed in treating many different bacterias as well as understanding their life cycles and willingness investigating the underlying cause further.

 

As I've stated before... there have been way too many children that are NOW positive for LD that were not having success post hdIVIG and are recovering with the correct combo of antibiotics. LD should be ruled out in advance of PANDAS diagnoses to ensure proper treatment.

Edited by SF Mom
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Hi SFmom,

 

sorry if you already posted this info.and I missed it.

1) What are your lyme symptoms, or are you thinking you are an assymptomatic carrier?

2) do you have a history of a tick bite(s) (I know lots of folks don't remember getting bit by ticks, just curious)

3) have you always lived in SF area? where do you think you got exposed?

 

BTW...I'm almost done with Cure Unknown. It is a great book! Thanks for recommending it.

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I have the following symptoms: rotating joint pain (started in knees moved to hips sometimes in ankles and fingers), hair loss, leg cramps, dizzy spells that have sent me to PAMF and diagnosed with an inner ear infections, urinary urgency (treated for several bladder infections but never confirmed) and almost daily waves of fatigue where I feel like I just have to lye down... If I take a nap I feel like I was hit over the head with a hammer 'brain fog' until the following day, headaches that I thought were related to being peri menopausal. I was slightly symptomatic prior to pregnancy... symptoms increased little after first and dramatically after second. I was administered steroids for a full body rash with my last/twin pregnancy.

 

I do not have a history of a known TIC bite with bullseye rash but I grew up and MN and spent my summer sailing/camping with our family on the Canadian border and have pulled a ton of TICS of myself, my brother, my sister and some even fully bloated TICS with blood off the family dog. My husband is from the NE and had a mysterious illness in college 'upstate NY' that consisted of fatigue with an inability to sleep that took him a very long time to recover from. His illness was thought to be Mono. I have spent many beautiful days hiking in Northern CA. So, the answer is who knows where I could have gotten LYME 'if I have it'.

 

I understand that the three most infected areas in order are: NE, MN/WI and then northern CA. Geez!

Edited by SF Mom
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If I am positive, my husband is next on the list to be tested. My girlfriend with the PANDAS son from our cluster children will be tested too? We should all know our results in the next two months. I do plan to post them.

 

-Wendy

 

wow!

 

Is your husband getting tested too?

 

It'll be interesting to see your results.

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Just FYI....I tested positive for "Lyme" 2 years ago....my two kids have had 3 lyme test...all negative. Actually, my younger son has had 4 tests...he got tested at 3 years of age after a tick bite...BEFORE PANDAS...negative........so much for congenital Lyme. (I know about the non antibody producers if congenital Lyme....we are not dealing with Lyme) I have been with my husband for over 20 years......he got tested...negative...absolutely no symptoms of ANYTHING!

 

I would caution everyone not to get hyped up about Lyme. The tests (even Igenex) are NOT conclusive of Lyme..band 41 is NOT conclusive of Lyme.......just like "the tests" are not conclusive of PANDAS.

 

I have more info. I could post...but, getting ready for VACATION!!! :D

 

p.s. NOT saying your child can't have both...just be careful....antibodies in PANDAS MAY cross-react with Lyme testing!!! Also, Lyme does not present with overnight debilitating symptoms!!! Okay.....I'm ready..... ;)

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Pacific Mama...

 

 

I said "may." What I am trying to say is that MUCH is unknown about PANDAS. NO testing is accurate....same as Lyme. Who here can say that the antibodies involved in PANDAS can't be cross-reacting with the Lyme tests and giving a false positive for Lyme???? I have asked that question many times.......no response...there really isn't one!!!!! I wasn't surprised by the lack of response.

 

Doesn't it seem coincidental that many PANDAS kids are testing positive for Lyme?? I personally do not believe all these kids have Lyme....some...but not all. I sway to the "false positive" side of it. Any bull's eye rashes?? A few.(I know...not always present...remember, I was diagnosed with "lyme" 2 years ago and went through extensive treatment...I know all about it) Any SLOWLY EVOLVING symptoms that occur in Lyme? A few. Not the majority.

 

P.s. If ANYONE knew which SPECIFIC antibodies where involved with PANDAS in the first place...we would all be in a much better place!!

 

Also, I am not sure what can be said about a child improving on high dose, multiple antibiotics. Lyme??? Or PANDAS?? Don't some PANDAS kids improve on high dose antibiotics??? Zith.....Amox....etc. What is the difference really????

Edited by P.Mom
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