Test Results back, what do they mean and IVIG?

[tygertoo]

Hello all...well after waiting for a few weeks I received the results for my DS.....his Anti Dnas B titer was 1,360...Mico Plasma was 5.0 and IGM was 1377. Does anyone have thoughts on these results? Also, Dr. K said that the next logical step is IVIG along with antibiotics...can anyone tell me of their experience with this?

 

Should my family be tested for Strep as well?

 

We are still getting a handle on all of this and would love to hear from others....

 

Thank you!!!

[EAMom]

Should my family be tested for Strep as well?

 

YES!!! Get throat cultures on everyone in the family to check for carriers.

 

Have you read these?

flowchart: http://www.latitudes.org/forums/index.php?showtopic=6688

and

FAQ: http://www.latitudes.org/forums/index.php?showtopic=6266

[tygertoo]

Should my family be tested for Strep as well?

 

YES!!! Get throat cultures on everyone in the family to check for carriers.

 

Have you read these?

flowchart: http://www.latitudes.org/forums/index.php?showtopic=6688

and

FAQ: http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

 

Thank you for the links! This is all so overwhelming and I feel like I am swimming with questions and concerns....I wanted to try antibiotics first but Dr K says that it will not work long term and that IVIG is the best route....the IVIG concerns me and was wondering about peoples experience with it...

 

I was hoping to get some personal experiences...I've seen posts on getting tonsils out....food allergies exasberating symptoms....antibiotics...IVIG....it just seems to go on and on...

 

Thank you to everyone and I appreciate any guidance as we begin this journey.

[EAMom]

I would vote for a trial of 1-2 mo. of high dose Azith. first (250mg or 500mg/day depending on your child's size). I would also start Ibuprofen.

 

I would definitely do abs first...there are some kids on this forum who have done well without IVIG. Even if you do end up doing IVIG, I think there is something to be said for getting symptoms a bit under control first. That's just me...we personally didn't rush into IVIG although we did do it in the end.

 

 

You need Azith. (or possibly Biaxin) for your antibiotic...not Augmentin, since Augmentin doesn't' "get" both Mycoplasma AND strep.

 

How old is your child and how bad are the symptoms right now?

[tygertoo]

I would vote for a trial of 1-2 mo. of high dose Azith. first (250mg or 500mg/day depending on your child's size). I would also start Ibuprofen.

 

I would definitely do abs first...there are some kids on this forum who have done well without IVIG. Even if you do end up doing IVIG, I think there is something to be said for getting symptoms a bit under control first. That's just me...we personally didn't rush into IVIG although we did do it in the end.

 

 

You need Azith. (or possibly Biaxin) for your antibiotic...not Augmentin, since Augmentin doesn't' "get" both Mycoplasma AND strep.

 

How old is your child and how bad are the symptoms right now?

 

 

 

My son is 8. His symptoms are mild in comparison to others on the forum thankfully. He began having tics when he was 4 and diagnosed w TS at 6. His OCD really kicked in at 7 - had issues w germs, choking on food, tactile issues, switching lights etc. We have never had any issues in academics he is ahead in all subjects, he plays sports, is social BUT is on the shy side has a little bouts of separation anxiety and socially a little immature. But is very living and even tempered. We currently take him to therapy every 2 months for Cognitive behavior therapy which has helped alot w the OCD. Right now we are pretty symptom free other than some mild ticking and occassional OCD things. We do have issues with bed wetting if we don't wake him up in the middle of the night. Dr K really feels IVIG wld be best. I am nervous about that. I have heard from many people that he is very good and we are in good hands but still have my own concerns. I really don't understand the test results other than they are elevated and some people talk about the Cunningham test?? I will have my DD tested (she is always sick w a cold so wldnt surprise me if she is a carrier) and my husband. I just finished w 30 days antibiotics bc I was recently diagnosed with a form of Lyme disease. I'm just trying to put all the pieces together.

[KeithandElizabeth]

I would also suggest having your son tested for lyme (via IGENEX) since you were positive for lyme disease and I believe the 70% of lyme cases test positive for mycoplasma.

 

Zithromycin would be a good start (versus Augmentin) since it addresses strep, myoplasma and lyme. But if there is any chance your child does have lyme, Zithromycin would probably not be enough. Most ILADS lyme doctors use multiple antibiotics for lyme and then treat the patient for 2 months after the symptoms are gone.

 

I know this can all be overwhelming, but I feel that there is so much hope once you treat the underlying infections.

 

Elizabeth

[tygertoo]

I would also suggest having your son tested for lyme (via IGENEX) since you were positive for lyme disease and I believe the 70% of lyme cases test positive for mycoplasma.

 

Zithromycin would be a good start (versus Augmentin) since it addresses strep, myoplasma and lyme. But if there is any chance your child does have lyme, Zithromycin would probably not be enough. Most ILADS lyme doctors use multiple antibiotics for lyme and then treat the patient for 2 months after the symptoms are gone.

 

I know this can all be overwhelming, but I feel that there is so much hope once you treat the underlying infections.

 

Elizabeth

 

 

He was tested by western blot and was negative...he had his first case of pneomonia when he was 10 months old and was hospitalized...get mycoplasma P yearly (sometimes twice a year)...never had strep tho...but his titer levels were high. still digging tho!! just not sure what to do next.

[Stephanie2]

Maybe you should consult with an infectious disease doctor or an immunologist regarding the infections you have going. Just a thought...

 

Stephanie

 

I would also suggest having your son tested for lyme (via IGENEX) since you were positive for lyme disease and I believe the 70% of lyme cases test positive for mycoplasma.

 

Zithromycin would be a good start (versus Augmentin) since it addresses strep, myoplasma and lyme. But if there is any chance your child does have lyme, Zithromycin would probably not be enough. Most ILADS lyme doctors use multiple antibiotics for lyme and then treat the patient for 2 months after the symptoms are gone.

 

I know this can all be overwhelming, but I feel that there is so much hope once you treat the underlying infections.

 

Elizabeth

 

 

He was tested by western blot and was negative...he had his first case of pneomonia when he was 10 months old and was hospitalized...get mycoplasma P yearly (sometimes twice a year)...never had strep tho...but his titer levels were high. still digging tho!! just not sure what to do next.

[sf_mom]

I agree with Elizabeth... You need to address underlying infection and sometimes there are multiple. Lyme literate Dr.'s can help determine exactly what underlying infections are present and how to address them with antibiotics one by one. You may eventually need IVIG to abate all symptoms but at least you'll know in advance what infections you are dealing with: Lyme, Mycoplasma, Strep, Staph, etc. If you go to the ILADS website you can find a Dr. local to you by e-mailing.

 

Our son's case was also considered mild on presentation: minor OCD and mostly TICS but because of our case history we knew most likely a resilient strain of strep due to RF exposure. It took 3 IVIG treatments to put symptoms into remission.

 

I know its exhausting and overwhelming..... keep reading and investigating.

 

 

 

 

 

I would also suggest having your son tested for lyme (via IGENEX) since you were positive for lyme disease and I believe the 70% of lyme cases test positive for mycoplasma.

 

Zithromycin would be a good start (versus Augmentin) since it addresses strep, myoplasma and lyme. But if there is any chance your child does have lyme, Zithromycin would probably not be enough. Most ILADS lyme doctors use multiple antibiotics for lyme and then treat the patient for 2 months after the symptoms are gone.

 

I know this can all be overwhelming, but I feel that there is so much hope once you treat the underlying infections.

 

Elizabeth

[tygertoo]

I agree with Elizabeth... You need to address underlying infection and sometimes there are multiple. Lyme literate Dr.'s can help determine exactly what underlying infections are present and how to address them with antibiotics one by one. You may eventually need IVIG to abate all symptoms but at least you'll know in advance what infections you are dealing with: Lyme, Mycoplasma, Strep, Staph, etc. If you go to the ILADS website you can find a Dr. local to you by e-mailing.

 

Our son's case was also considered mild on presentation: minor OCD and mostly TICS but because of our case history we knew most likely a resilient strain of strep due to RF exposure. It took 3 IVIG treatments to put symptoms into remission.

 

I know its exhausting and overwhelming..... keep reading and investigating.

 

 

 

 

 

Would the Western Blot be sufficient to rule out Lyme? I was diagnosed with a tick bite called Erlichia chafeenis - not lyme but I guess a cousin to it. My son was negative on the West Blot. He has had myco plasma Pneuomonia every year since he was 10 months old (sometimes twice a year). Can you tell me about your experience with the IVIG? Side effects, who did it etc??

 

Thank you!! This forum is a lifesaver as im sure you know!!

 

Karen

 

 

 

 

 

 

 

 

 

 

I would also suggest having your son tested for lyme (via IGENEX) since you were positive for lyme disease and I believe the 70% of lyme cases test positive for mycoplasma.

 

Zithromycin would be a good start (versus Augmentin) since it addresses strep, myoplasma and lyme. But if there is any chance your child does have lyme, Zithromycin would probably not be enough. Most ILADS lyme doctors use multiple antibiotics for lyme and then treat the patient for 2 months after the symptoms are gone.

 

I know this can all be overwhelming, but I feel that there is so much hope once you treat the underlying infections.

 

Elizabeth

[sf_mom]

My understanding of 'Western Blot' is it doesn't rule out Lyme. A lot of false negative 'I think'. We are not treating our son for Lyme so someone more informed might correct me.

 

Mycoplasma can present a real problem if not treated fully....... http://www.latitudes.org/forums/index.php?...art=#entry63708

 

Based on your son's history it seems more of a chronic infection rather than multiple pneumonia's. I highly suspect there could be additional infections as he has been sick for a very long time. With a compromised immune system/underlying infection/s ones ability to fight off additional bacteria's is very difficult.

 

Our son was treated by Dr. K.... he is 98% recovered and 130% better in areas we did not realize was related to PANDAS. As a family, we chose to treat very aggressively.... IVIG was not a scary proposition to us because it saved our younger son's life and I also had IVIG for fertility issues. Our son was 3.75 when exposed to RF, got sick and went untreated until 10 months ago. He just turned 6 in March.

Edited May 16, 2010 by SF Mom

[lyme_mom]

My understanding of 'Western Blot' is it doesn't rule out Lyme. A lot of false negative 'I think'. We are not treating our son for Lyme so someone more informed might correct me.

 

Mycoplasma can present a real problem if not treated fully....... http://www.latitudes.org/forums/index.php?...art=#entry63708

 

Based on your son's history it seems more of a chronic infection rather than multiple pneumonia's. I highly suspect there could be additional infections as he has been sick for a very long time. With a compromised immune system/underlying infection/s ones ability to fight off additional bacteria's is very difficult.

 

Our son was treated by Dr. K.... he is 98% recovered and 130% better in areas we did not realize was related to PANDAS. As a family, we chose to treat very aggressively.... IVIG was not a scary proposition to us because it saved our younger son's life and I also had IVIG for fertility issues. Our son was 3.75 when exposed to RF, got sick and went untreated until 10 months ago. He just turned 6 in March.

Yes that is true. There are many more false negatives than false positives. The Western blots from lacorp and quest and other labs covered by insurance are wrong half the time, mostly false negatives. Igenex and Clongen labs offer good western blots that test for all known lyme antibodies (other tests do not!) and several strains of lyme (there are close to 300 strains). So you could have a different strain of lyme that is not tested for and still have lyme but get a negative result. It costs around 200 for a good lyme antibody test from igenex or clongen. False negatives are common. Adults can take a cd57 test as a quick screening test for lyme. A depressed score indicates an active lyme infection. Under 100 is suspicious for lyme, under 60 is pretty definitely lyme. This test does not work for kids for some reason.