Anxiety is major issue

[melanie]

When we saw Dr B danny had anxiety increased in his office.Dr B clearly said to me that he can get rid of that.Is this true?I know he said that.Im hoping he calls this week,Louise said she would ask him to call.I want to ask him some questions before I do the IVIG with him.

 

Melanie

[NancyD]

Anxiety seems to be the last to go for us. So far IVIg has not been able to touch it. I'm hoping plasmapheresis will. I'm sure every child reacts differently to each treatment. For us, tics were the first to disappear (and they were really bad), whereas many say tics are the last to go.

 

Nancy

[sf_mom]

My girlfriend's son's TICS also resolved immediately. Anxiety, Panic attacks, rages and OCD hung in there....... He was tested for Lyme and co-infections via Igenex just prior to 3 IVIG and he is positive for Bartonella/Ehrlicia. Anxiety is a huge symptom of Bartonella. He is now doing much better on the right antibiotic to address Bartonella. He also had classic PANDAS response to strep and titers were high which also resolved after first IVIG.

 

For my son the anxiety and OCD resolved a good six months ahead of the TICS.

 

Have you checked for Lyme/co-infections via Igenex yet?

 

-Wendy

[melanie]

Wendy I promise Ill do it today (call and order) Can you forward the # again.

 

melanie

[NancyD]

Wendy, is Igenex more reliable than other tests for Bartonella? From what I have read, "Diagnosis should be confirmed with demonstration of a 4-fold rise in antibody levels, initially immunoglobulin M (IgM) followed by immunoglobulin G (IgG)." But IVIg would alter the levels.

 

Nancy

[sf_mom]

Nancy: Dr. K has told some to wait a minimum of 12 weeks post IVIG to test for Lyme/co-infections. My girlfriend's son was approximately 14 weeks post IVIG when he was positive for the co-infections.... retesting for Lyme now that they are going after specific strains. Igenex is much more reliable... Just google Igenex/Lyme.

 

We waited almost 6 months post IVIG to test our son.

 

Melanie: YEEEEEEEEEEEEEAAAAAAAAAAAAAAAAAAAH!!! I'll take the promise Igenex 800.832.3200. You have to check for co-infections as well as Western Blot.

 

BARTONELLA-LIKE ORGANISMS

It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a

fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However,

several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from

that described as “cat scratch disease”. For example, in patients who fit the clinical picture, standard

Bartonella blood testing is commonly non-reactive. Furthermore, the usual Bartonella medications do not work

for this- they suppress the symptoms but do not permanently clear them. For these reasons I like to refer to

this as a “Bartonella-like organism” (BLO), rather than assume it is a more common species.

 

Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic

Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even

seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and

confusion.

 

 

http://www.lymediseaseresource.com/BurrGuide2008.pdf

Edited July 27, 2010 by SF Mom

[Ellen]

Wendy, I was wondering if you know which antibiotic it was that helped your friend's son with Bartonella. When my son first began to have PANDAS symptoms, he also came out positive for lyme with Igenex and positive for Bartonella (not with Igenex but with another lab). We did treat for both lyme and Bartonella but did not get great results at the time. I'm curious to find out what has worked for Bartonella for others because this is a treatment avenue I may be exploring again some time soon.

 

Ellen

 

My girlfriend's son's TICS also resolved immediately. Anxiety, Panic attacks, rages and OCD hung in there....... He was tested for Lyme and co-infections via Igenex just prior to 3 IVIG and he is positive for Bartonella/Ehrlicia. Anxiety is a huge symptom of Bartonella. He is now doing much better on the right antibiotic to address Bartonella. He also had classic PANDAS response to strep and titers were high which also resolved after first IVIG.

 

For my son the anxiety and OCD resolved a good six months ahead of the TICS.

 

Have you checked for Lyme/co-infections via Igenex yet?

 

-Wendy

[norcalmom]

We haven't done any testing for Lyme. I see that many of you are doing it post IVIG. Did they have Lyme(and pandas) prior to ivig? It isn't something they can GET from ivig is it?

Do the symptoms wax and wane like pandas, or are they constant? Thanks!

[peglem]

When we saw Dr B danny had anxiety increased in his office.Dr B clearly said to me that he can get rid of that.Is this true?I know he said that.Im hoping he calls this week,Louise said she would ask him to call.I want to ask him some questions before I do the IVIG with him.

 

Melanie

Allie's anxiety is reduced immensely from IVIG. Its not gone, but those pathways have been almost all she's learned throughout her life. She is requesting to try things that she was prevented from doing because of crippling anxiety. So, its been reduced enough that she feels she can work through it and overcome it.

[sf_mom]

Ellen,

 

My friends son is shedding symptoms (not without herxing though) on Biaxin 500 m.g./Rifampin 300 m.g...... He is 50 pounds. I am assuming they will rotate antibiotic upon their next visit September 15th or perhaps add the tindamax. I can keep you posted.

 

Definitely, pursue the Lyme further now that your son is stronger.... Lyme treatment can take 9 months to 3 years. I think at this point the right antibiotic could push him all the way to recovery.

 

GOOD LUCK!!!!

Edited July 27, 2010 by SF Mom

[PhillyPA]

Anxiety gone immediately after IVIG. After two days post ivig my son was calm, cool and collected. It is GREAT to see him so relaxed. Love it. He sleeps like angel too.

[sf_mom]

I think some have explored Lyme prior to IVIG and some have not. Not all have done the Igenex testing with co-infection panels either. The symptoms do wax and wane with Lyme. Northern CA is very Lyme intense.

 

Our son was 'classic' Pandas triggered by strep (positive ASO titer only) and didn't know prior to IVIG that Lyme has similar symptom presentation. We did not test in advance and maybe wrongly assumed strep was the only trigger or underlying infection. I now strongly feel it is one of the necessary tests prior to pursuing IVIG because the right antibiotic regimen is critical to treat Lyme/co-infections.

 

Both my older DS and my younger DD came back positive for the same double starred band. One has had IVIG and one has not. I'll keep updating when I have further results from our family. Our younger DS has not been tested yet and we are waiting until we consult with Dr. Steve Harris in August to do further testing.

[Ellen]

Thanks! This is really helpful. I'll keep you posted.

 

Wendy, I was wondering if you know which antibiotic it was that helped your friend's son with Bartonella. When my son first began to have PANDAS symptoms, he also came out positive for lyme with Igenex and positive for Bartonella (not with Igenex but with another lab). We did treat for both lyme and Bartonella but did not get great results at the time. I'm curious to find out what has worked for Bartonella for others because this is a treatment avenue I may be exploring again some time soon.

 

Ellen

 

My girlfriend's son's TICS also resolved immediately. Anxiety, Panic attacks, rages and OCD hung in there....... He was tested for Lyme and co-infections via Igenex just prior to 3 IVIG and he is positive for Bartonella/Ehrlicia. Anxiety is a huge symptom of Bartonella. He is now doing much better on the right antibiotic to address Bartonella. He also had classic PANDAS response to strep and titers were high which also resolved after first IVIG.

 

For my son the anxiety and OCD resolved a good six months ahead of the TICS.

 

Have you checked for Lyme/co-infections via Igenex yet?

 

-Wendy

[tpotter]

My son had IVIG last year about 2 months prior to PEX. Both definitely helped with anxiety.

[NancyD]

Wendy,

 

Thanks so much for clarifying (re Igenex and Bartonella). Everything I read was specific to "cat scratch disease". We're 19 weeks post IVIg. I think I will go ahead and order this test and do it next month when we draw for liver function.

 

We're also hoping to do plasmapheresis later this summer (followed by IVIg 28 days later) if we can get insurance approval -- perhaps that will help anxiety.

 

Nancy

 

Nancy: Dr. K has told some to wait a minimum of 12 weeks post IVIG to test for Lyme/co-infections. My girlfriend's son was approximately 14 weeks post IVIG when he was positive for the co-infections.... retesting for Lyme now that they are going after specific strains. Igenex is much more reliable... Just google Igenex/Lyme.

 

We waited almost 6 months post IVIG to test our son.

 

Melanie: YEEEEEEEEEEEEEAAAAAAAAAAAAAAAAAAAH!!! I'll take the promise Igenex 800.832.3200. You have to check for co-infections as well as Western Blot.

 

BARTONELLA-LIKE ORGANISMS

It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a

fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However,

several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from

that described as cat scratch disease. For example, in patients who fit the clinical picture, standard

Bartonella blood testing is commonly non-reactive. Furthermore, the usual Bartonella medications do not work

for this- they suppress the symptoms but do not permanently clear them. For these reasons I like to refer to

this as a Bartonella-like organism (BLO), rather than assume it is a more common species.

 

Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic

Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even

seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and

confusion.

 

 

http://www.lymediseaseresource.com/BurrGuide2008.pdf

Edited July 28, 2010 by NancyD