Regarding Lyme info in different topic headings:

[PacificMama]

Please, don’t let the “L” word stop you from reading on. Like others here who have discovered lyme is at the root of their PANDAS issues, I’m hoping to help connect the dots for some of you posters…

 

Just some random thoughts referencing postings on various recent threads…

 

1. A Lyme/Borrelia infection creates a UNIQUE disease presentation in every individual that contracts it. There is NO standard presentation of symptoms. (which is why unknowledgeable doctors dismiss it too easily). It is multisystemic – so you may have many symptoms across many areas of the body. OR, you may have ONLY central nervous system involvement – with your only symptoms being neuropsych in nature (such as tics, ocd, anxiety, behavioral etc). It can present in the exact way you know to be the classic PANDAS presentation. ( Research: “lyme encephalopathy”, “neuroborreliosis”, “neurological lyme”, “neuropsychiatric lyme”. Quite a lot of medical literature exists on this topic.

Extensive symptom list: http://www.canlyme.com/patsymptoms.html

 

2. You do NOT have to have joint aches and body pain to consider lyme. However, anybody here who has had joint pain / body aches, especially migratory ones, should ABSOLUTELY be thinking lyme as #1 underlying infection.

 

3. Western Blot testing is HUGELY INNACURATE. Consequently, CDC says lyme MUST be a clinical diagnosis. Forget all the lyme testing you’ve had, and get the Western Blot from Igenex done. It is the most accurate test out there. I know you’ve spent a ton of money and time on testing already, but the $200-$400 you will spend on the initial tests will save you years of heartache and pain, and potentially thousands of dollars in ineffective treatments.

 

4. Regarding Strep: You can be positive for strep. You can be reactive to strep. You can see clear flares in symptoms when exposed to strep. You can have high Cam K.

BUT !!! Underneath it all, it can still be the lyme/borrelia bacteria that is driving the whole dysfunction of the immune system.

 

5. Herxing (an increase of existing or new symptoms) IS VERY INDICATIVE OF LYME and/or COINFECTIONS. There is a lot of discussion here regarding herxes, and what infections can cause them. Everything I have ever known, read or been told by lyme doctors is that only certain classes of organisms can cause the toxic die-off reaction that creates a herx. And strep isn’t one of them.

*SF MOM, I hope Dr. Harris clarifies some of this when you talk with him. Or how IVIG treatments might factor into symptom flares?? I will re-verify w/our llmd at next appt.

 

6. Common antibiotics used to treat lyme include those that many of you are using: Azith; Augmentin; Amox; Omnicef; Flagyl and others.

In lyme / Co treatment, flagyl and tindamax are used as “cyst busters” (lyme/borrelia bacteria can morph into 3 different forms, included a dormant-like cyst form.). Flagyl and Tindamax may produce particularly difficult herxing symptoms (followed by improvement).

 

7. LLMD’s (lyme literate medical doctors) are SKILLED AT TREATING THE MULTI-INFECTIOUS PATIENT. They know how to use combinations of antibiotics, and rotations of antibiotics, to attack one or multiple infections. They deal all the time with patients who have lyme, coinfections, mycoplasma, strep, ebv, and on and on. They strip away at the layers of infection.

 

8. LLMD’s won’t stop helping you until you are healed and symptom-free!

 

9. PANDAS doctors (and I mean no disrespect) are not well-versed in lyme.

 

10. Over 25,000 COMFIRMED new cases of lyme are reported each year. This number is vastly underreported and thought to be only 10% of the actual new cases each year. You do not have to live in wooded area to consider lyme. Lyme is found in EVERY STATE. Lyme can be transferred to the fetus during pregnancy.

 

11. Get the IGENEX testing done!

http://igenex.com/Website/

 

12. Contact ILADS for Lyme doctor near you: Book your appointment now… there are long wait times.

http://ilads.org/

 

 

[sf_mom]

THANK YOU, THANK YOU, THANK YOU for all of your posts.

 

I just want every one to know that my symptoms consist of: rotating joint pain (started in knees and then moved to hips), night waking, headaches (originally), urinary urgency (thought to be bladder infections), leg cramps, hair loss, unexplained.... out of no where fatigue, dizziness. All symptoms intensify when I get sick with a cold or flu. I had two symptoms prior to pregnancy..... with each pregnancy my symptoms intensified reaching their peak in Nov 2009 when I was finally treated for a month with Azithromycin and many of the symptoms resolved (Of course I thought this was all strep related to our children's illnesses). We are looking into the fact that this might be congenital Lyme that has affected all of our children. They all have high CaM Kinase with each having a unique set of symptoms that have all improved with antibiotics and IVIG treatments for two children. I understand from looking into congenital Lyme that the children do not always produce antibodies to Lyme because it doesn't recognize the bacteria as foreign. AND, in some cases children with congenital Lyme are positive for band 41 ONLY when initially tested.

 

I will clear the Herxing issue up with Dr. Harris and speak with him more specifically on band 41. In my son's case the cycle of symptoms was very clear...... but unfortunately we might be dealing with Lyme and not strep at all but a reaction to strep illnesses.

 

 

-Wendy

Edited August 3, 2010 by SF Mom

[philamom]

PacificMama-

 

I also want to say thank you for your post! My daughter is "typical" PANDAS, but because of Wendy's persistence (thanks again) I ordered the Igenex Western Blot. Positive! I would have never guessed! Prior, we had Lyme testing done through Quest which came back negative.

[Kay]

Thanks for your posting, I have a question. My daughter was off of antibiotics in the last 14 days with the intent of having blood drawn to have the lyme testing done. I had read someplace where someone said you had to be off at least 10 days for the testing but I am not sure if that is for all testing for lyme or for just certain lyme test. Our problem is that once she is off the antibiotics we really backslide and I will not be able to get her to a doctors office or lab to have the blood drawn she just won't be able to do it. She is a completly different person by the time we get to ten days off. She is about 70% when on antibiotics, she has had the usual Quest lyme test including the western blot and only the band 41 showed nothing else. I had wanted to really rule it out and felt like we should use the lab in CA. I did email them with my question but as of yet they have not responded. I just wondered if anyone knows the answer here.

 

Thanks.

Kay

[sf_mom]

Kay, I would call them.... the people who answer the phones are very nice and well informed. I actually think they know my voice by now I've called so many times

Edited August 3, 2010 by SF Mom

[Kay]

Thanks I will call them tomorrow. I am just hoping they will be able to do something while on the antibiotic.

[lyme_mom]

Thanks for your posting, I have a question. My daughter was off of antibiotics in the last 14 days with the intent of having blood drawn to have the lyme testing done. I had read someplace where someone said you had to be off at least 10 days for the testing but I am not sure if that is for all testing for lyme or for just certain lyme test. Our problem is that once she is off the antibiotics we really backslide and I will not be able to get her to a doctors office or lab to have the blood drawn she just won't be able to do it. She is a completly different person by the time we get to ten days off. She is about 70% when on antibiotics, she has had the usual Quest lyme test including the western blot and only the band 41 showed nothing else. I had wanted to really rule it out and felt like we should use the lab in CA. I did email them with my question but as of yet they have not responded. I just wondered if anyone knows the answer here.

 

Thanks.

Kay

 

My local llmd told me it does not matter. You can test on antibiotics. Certainly Dr.Jones must not think it matters either because he routinely tests his patients with repeat igenex tests while on abx.

[LNN]

If your child has high C3D compounding, I've read that can cause a false negative. Can you shed any light?

[justinekno]

I wonder if IGenex would have any info about this.

 

 

If your child has high C3D compounding, I've read that can cause a false negative. Can you shed any light?

[justinekno]

I was told by them you only had to be off of antibiotics for 10 days if you are doing the pcr tests.

 

Thanks for your posting, I have a question. My daughter was off of antibiotics in the last 14 days with the intent of having blood drawn to have the lyme testing done. I had read someplace where someone said you had to be off at least 10 days for the testing but I am not sure if that is for all testing for lyme or for just certain lyme test. Our problem is that once she is off the antibiotics we really backslide and I will not be able to get her to a doctors office or lab to have the blood drawn she just won't be able to do it. She is a completly different person by the time we get to ten days off. She is about 70% when on antibiotics, she has had the usual Quest lyme test including the western blot and only the band 41 showed nothing else. I had wanted to really rule it out and felt like we should use the lab in CA. I did email them with my question but as of yet they have not responded. I just wondered if anyone knows the answer here.

 

Thanks.

Kay

[Kay]

I did call and was told like you said Justine that only if you are doing pcr and urine test does it matter.

 

So picking all your brains, what test do you think should be run?

 

I was going to repeat what we had done with Quest which is just the Elisa plus western blot. Anything additional?

 

She does show the high titer for Igg Mycoplasma.

 

Thanks for all who posted.

Kay

[justinekno]

I'm away on vacation right now so I don't have my notes with me but I did the one our dr recommended which I believe was western blot igg and igm with the fluorescent light read. It was $260. Our dr said sometimes the fluorescent light portion will come up positive when the reg portion of the WB reads negative. I figured for $60 it was worth the extra check.

 

 

I did call and was told like you said Justine that only if you are doing pcr and urine test does it matter.

 

So picking all your brains, what test do you think should be run?

 

I was going to repeat what we had done with Quest which is just the Elisa plus western blot. Anything additional?

 

She does show the high titer for Igg Mycoplasma.

 

Thanks for all who posted.

Kay

[justinekno]

SF Mom; We are also looking into congenital Lyme. We are waiting for our IGenex results. There was a recent post about Dr. Jones thoughts that kids born with Lyme are very sickly. My son was not "sickly" but did have lots of high fevers and neuro issues. Were your kids very ill as infants? I can't remember if you tested them through IGenex. My son tested 41 positive on the regular western blot and had a high cam kinase (170). I wonder what Dr. Harris' take would be on congenital Lyme. Were you ever tested for Lyme or just treated for symptoms? I had the bullseye rash so never had bloodwork done.

 

 

 

THANK YOU, THANK YOU, THANK YOU for all of your posts.

 

I just want every one to know that my symptoms consist of: rotating joint pain (started in knees and then moved to hips), night waking, headaches (originally), urinary urgency (thought to be bladder infections), leg cramps, hair loss, unexplained.... out of no where fatigue, dizziness. All symptoms intensify when I get sick with a cold or flu. I had two symptoms prior to pregnancy..... with each pregnancy my symptoms intensified reaching their peak in Nov 2009 when I was finally treated for a month with Azithromycin and many of the symptoms resolved (Of course I thought this was all strep related to our children's illnesses). We are looking into the fact that this might be congenital Lyme that has affected all of our children. They all have high CaM Kinase with each having a unique set of symptoms that have all improved with antibiotics and IVIG treatments for two children. I understand from looking into congenital Lyme that the children do not always produce antibodies to Lyme because it doesn't recognize the bacteria as foreign. AND, in some cases children with congenital Lyme are positive for band 41 ONLY when initially tested.

 

I will clear the Herxing issue up with Dr. Harris and speak with him more specifically on band 41. In my son's case the cycle of symptoms was very clear...... but unfortunately we might be dealing with Lyme and not strep at all but a reaction to strep illnesses.

 

 

-Wendy

[Kay]

Thank you Justine for the Info I will take a closer look at the test they offer and your info and go from there. I have to call my ND too and get an appointment for a draw as well. I can order the kits right? They just have to come back with a doctors order and payment or you pay for them upfront? Sorry for all the questions.

[philamom]

I did call and was told like you said Justine that only if you are doing pcr and urine test does it matter.

 

So picking all your brains, what test do you think should be run?

 

I was going to repeat what we had done with Quest which is just the Elisa plus western blot. Anything additional?

 

She does show the high titer for Igg Mycoplasma.

 

Thanks for all who posted.

Kay

 

Kay-

I recommend the Basic Lyme Panel #4090 (Western Blot IgG, IgM, Lyme IFA) at $260 thru IgeneX. You pay upfront and submit to your insurance...and then keep your fingers crossed for coverage. They hold the sample for three months, so if you decide to run additional tests you will just need an additional fax from your doctor sent over.

Edited August 4, 2010 by philamom