Lyme questions

[searching_for_help]

Is it possible dd could have Lyme WITHOUT any physical symptoms? Her symptoms are intrusive thoughts, OCD, anorexia nervosa, extreme anxiety. Tests show immune system not good (very low NK cells - CD57 and complement 3) Titers high for past mycoP, HHV6, also h.pylori and I'm too tired to remember the rest. Oh yeah. Gut issues as well. This definitely started with strep, but her IGG titers aren't all that high anymore, although her Dad just tested positive for strep (NO symptoms), and ds was positive for mycoP with no symptoms.

 

She did NOT respond to IVIG or steroids (twice). But she has really herxed when beginning Doxy and Valacyclovir.

 

Her Igenex IGM results were:

IND for 23-25

IND for 39

++ for 41

IND for 83-93

 

So, once again - CAN YOU HAVE LYME WITH NO PHYSICAL SYMPTOMS?

With no positive response with IVIG or steroids, should we consider something else?

[SSS]

Yes. My dd does not have outward physical manifestations like 'typical' Lyme patients:

no joint pain, no knee pain, doesn't complain of any headaches.

She gets up and goes to school every day.

It's all neuro here, too-

OCD (moving target kind, gets thoughts and ideas in her head that plague her, etc.)

Can do vocal tics. Mouthy. At worst, horribly rude. Hyper, walks around and can't settle. At home, no attention span.

 

Have you treated with antibiotics the high Myco, and H Pylori?

[nicklemama]

Lyme presents as neurological or arthritic. My son has the neuro form and I have the arthritic form. My LLMD considers indeterminates on Igenex to be positive. It's like a pregnancy test where the line is not dark but it can be seen. If there are no antibodies to Lyme you would get no response at all. Your Igenex above shows exposure to Lyme. Those are very specific Lyme bands. If your immune system is not functioning properly it has a hard time mounting a response to Lyme, hence the negatives or lowered response with indeterminates.

 

You should read Dr Horowitz's new book Why Can't I Get Better. He talks about all the other infections and issues he sees in chronic Lyme patients. He calls it MSIDS.

Edited May 17, 2014 by nicklemama

[putting together the piece]

Yes. Find an LLMD fast. Your ind. bands are lyme specific. This is exactly how my DS 12 presented. After 1 month abx treatment for Lyme his INGENEX test lit up CDC postive. Also my DS 9 was CDC positive and although we were treating with abx. for the Lyme, IVIG (2 rounds) would not hold. You have to handle the Lyme infection and any co-infections.

[philamom]

Symptoms could be from Bartonella, a tick-borne co infection. Anymore, its rare for a tick to just harbor borrelia. They usually transmit co-infections as well. Bartonella is known for neuropsychiatric symptoms, as well as swallowing, heartburn, choking difficulties and GI issues. Unfortunately, since bartonella is so elusive, testing proves even more difficult to yield a positive result. My dd test positive for bart through Quest (Nicholas Lab in Calif), but never Igenex. We have it drawn with other quest labs, but that test is marked to be performed at the Nicholas lab.

 

83-93 is borrelia specific, as well is 23-25 I believe, so something is showing up.

Edited May 17, 2014 by philamom

[searching_for_help]

sss - yes, she's been treated for h. pylori and is currently taking Doxy for mycoP. (Also on an antiviral.) She's been on 400 mg. a day of Doxy for the last 30 days. Not seeing any improvement with the anxiety or intrusive thoughts.

 

nickelmama- you mentioned your son has the neuro and you have the arthritic. I've had weird pains in my neck, shoulder, back and knee - sometimes it seemed like it was cycling from place to place. I've often had pain in the back of my neck and it's crackly sounding. I've often wondered if it's Lyme, but have been to busy with my kids health problems to have myself checked yet. Think I will now. Also, I have Horowitz's book - I'll have to actually get it read!

 

philamom - Before the kids were born, I had a swollen lymph node under my arm, and doc noticed a cat scratch on my arm. I requested dd to be tested for Bartonella, and it was negative. (Igenex, I'm pretty sure.) I'm wondering if we might need to have that test redone.

 

putting together the piece - Fortunately, our NP is very interested in Lyme treatment and has been learning all she can. She didn't rule Lyme out after we got the results, but started treating some of the other issues first. I think now, it's time to start thinking more serious about the Lyme aspect.

 

Thank you all so much for your responses. I could not survive without this forum.

[frikfrak]

Hi,

 

Yes, my DS (23) sinced diagnosed 4+ years ago, all bands positive as well as RMSF....never had, still doesn't have any physical symptoms...only neurological.

[nicklemama]

I was misdiagnosed with rheumatoid arthritis in 1997. All these years, no joint damage, just pain and stiffness. About 6 months ago, things really flared up and fibromyalgia and chronic fatigue were added. I think it was caused from all the stress of dealing with DS these past years. I've been suspecting I had lyme for a year or so but never did anything about it until it got really bad. I didn't really have the time, trying to deal with DS and get him well. Now that he's better, its my turn. Yuk.

[colleenrn]

I would be suspicious of Lyme with those bands, even though they are indeterminate. Also, has she been tested for babesia and bartonella? They can cause those symptoms.

Colleen

[searching_for_help]

Just an update for this post. She did the iSpot through Neuroscience and DID finally test positive for Lyme.

[mama2alex]

Glad you got an answer!

[rowingmom]

Please don't neglect to test for coinfections. Lyme rarely travels alone.