Igenex negative but Specialty Labs tell us we have Bartonella

[sptcmom]

Hello all

Finally have a moment to post. Thank you so very much to all you Lyme moms who encouraged me to keep looking and searching for answers for the leg pains. Dr Jones saw DS8 last week as did Dr B. Dr Jones found Igenex testing to be correctly negative for all but Bartonella H. The Igenex titers for Bartinella IgM was less than 1:20 but for IgG it was = 1:20 which is high normal or borderline. Dr Jones evaluated DS fo a couple hours. He found Right facial nerve sensory-motor involvement, right eye convergence insufficiency, left brain developing larger than right brain as is the skull, right upper extremity developing faster than left upper. Left lower extremity developing faster than right lower. DS has left butt muscle atrophy and left thigh muscles are low tone. He has subtle pain in left hip and pelvic area which Dr Jones said could be inflammation of the synovial membranes. He sent bloodwork to specialty labs for Bartonella and the IgG is positive.

We are currently being treating with Biaxin, Bactrim and zithromax. I will alternate the Biaxin with Augmentin as needed.

I'm better today, mentally I mean. It was very hard for me to comprehend this stuff. I mean its deep and I am reading a lot. Dr Jones pooh poohs all IgG levels except for the tic borne disease. He says that Band 41 is of no significance. He also spoke about Mycoplasma Fermentens species, Chlamydia as a concern.

DS has been herxing with flu like symptoms.

A special thanks goes out to Wendy for all her support, wisdom and advise. I hope this is my answer. Now I hear that once treatment starts then the other coinfections turn up positive. Lets see what happens.

Jodie

[JuliaFaith]

Hello all

Finally have a moment to post. Thank you so very much to all you Lyme moms who encouraged me to keep looking and searching for answers for the leg pains. Dr Jones saw DS8 last week as did Dr B. Dr Jones found Igenex testing to be correctly negative for all but Bartonella H. The Igenex titers for Bartinella IgM was less than 1:20 but for IgG it was = 1:20 which is high normal or borderline. Dr Jones evaluated DS fo a couple hours. He found Right facial nerve sensory-motor involvement, right eye convergence insufficiency, left brain developing larger than right brain as is the skull, right upper extremity developing faster than left upper. Left lower extremity developing faster than right lower. DS has left butt muscle atrophy and left thigh muscles are low tone. He has subtle pain in left hip and pelvic area which Dr Jones said could be inflammation of the synovial membranes. He sent bloodwork to specialty labs for Bartonella and the IgG is positive.

We are currently being treating with Biaxin, Bactrim and zithromax. I will alternate the Biaxin with Augmentin as needed.

I'm better today, mentally I mean. It was very hard for me to comprehend this stuff. I mean its deep and I am reading a lot. Dr Jones pooh poohs all IgG levels except for the tic borne disease. He says that Band 41 is of no significance. He also spoke about Mycoplasma Fermentens species, Chlamydia as a concern.

DS has been herxing with flu like symptoms.

A special thanks goes out to Wendy for all her support, wisdom and advise. I hope this is my answer. Now I hear that once treatment starts then the other coinfections turn up positive. Lets see what happens.

Jodie

So glad you are making headway with your DS! My DS12 has had flu-like symptoms since getting sick in March and has never fully recouperated. He still has headache, sore muscles, stomach pain, fatigue, etc. One of his tests came back a bit high (after all others [except Cunninghams]coming back neg) - smooth muscle AB, and now he is being tested for 'Dermatomyositis'. Blood tests for this, creatine kinase & adolase, both came back neg. but they still did an MRI on his pelvic area to make sure muscles did not show signs of this. Only mention this, because some of what you are experiencing sounds similar.

 

DS dr. did think that his initial trigger was micoplasma, but now she is suspecting the flu which this new disease follows.

 

We have not done the IGenex for lyme yet but I am thinking we should. Dr. does not think we should but may be persistant in ordering it. Lyme is just not prevalent in our area of the us (West coast). Also, DS does not have some of the symptoms.

 

Your post has me thinking of looking at Bartonella again. Is this part of the Igenex testing? It sounds like your doctor is doing a thorough job which is great!

 

Best wishes for your family.

[KeithandElizabeth]

Jodie:

 

I completely understand how difficult this all is to wrap around your head mentally. I have been thinking about your son from your posts and I know IVIG was not a complete success, so I am happy that you have other avenues to explore which may lead to true healing.

 

These blood tests are so very tricky and what is so frustrating is that sometimes the sickest people have a negative tic borne disease blood test due to either the antibodies hiding out in immune complexes or hiding out in other places in the body.

 

It sounds like you are already seeing some herxing and the herxing can be very intense. It sounds like you are in good hands with Dr. J!!!

 

Thanks for sharing and I wish your son and family healthier days to come!!

 

Elizabeth

[PacificMama]

 

JuliaFaith,

 

I just wanted to clarify for you that yes indeed, the CDC considers the whole pacific west coast (northern Cal, Oregon, and Washington) to be very endemic for lyme disease and other vector borne illnesses. There is quite a lot of lyme reported from Washington state.

 

Here is a link to the Oregon Lyme disease network, which could help you find a doctor to evaluate and help you rule out, or in, these infectious diseases. The group actually helps a lot of folks in Washington.

http://www.oregonlyme.org/

[saidie10]

Wow this all is very complicated but it sounds like you are on the right track! I will send some positive thoughts your way as you continue on this journey to get treatment for your little boy.

[sptcmom]

Thank you guys for your support and guidance which has always been invaluable to me and my family.It is a daunting task indeed and we're handling it one day at a time right now.

[PacificMama]

Hi Jodie,

 

I posted to your message last night... but don't see it today.

 

I just wanted to say that's great news that you have found some answers and are on the path to recovery with your son. Dr Jones does such a thorough exam, and can find the most nuanced symptoms (of course he knows what he is looking for).

 

Best of luck, and keep us posted.

Mary

[kimballot]

Jodie -

 

Thanks for sharing that info with us. Please keep us posted on your son. I hope this new finding helps to relieve the underlying infection so your son can continue to heal!

[Suzan]

Wow, I will watch for his improvement with much interest! We are slowly working our way towards our lyme evaulation for dd9. Igenex blood draw next week and then preparing all the paperwork our ilads doc will need. I sincerely hope this will help your son's pain!

 

Susan

[sf_mom]

Jodie

 

As you know... I am very hopeful for your son. There is a good discussion on Herxing which I am sure you are reading. It seems like several children are just starting treatment so we are not alone in this journey. From what I understand, the 12 week mark is typically a huge turning point for children with Lyme/co-infections. Perhaps its because it takes 90 days to replace WBC and 120 for RBC..... 'that is just speculation' on my part.

 

We saw the flu like symptoms as well in DS but thankfully it passed quickly.

 

-Wendy