Daughter with constant headache. Chronic lyme relapse?

Hi,
My daughter has been down with a extreme headache for over a month now. This along with joint pain (no swelling) is her current symptom list. She underwent IV treatment for Lyme about 2.5 years ago and we are worried that this may be a relapse. Need help sorting out some of the blood tests that have been done as the different docs have stuck with their affiliations (ILADS vs IDSA).

S. Lyme IgG Western Blot - result 54. Negative

S. Lyme IgM Western Blot - result 12.9. Negative

Lyme LTT full antigen - 2 SI (<2 is Negative)

Lyme LTT Specf - 1.5 SI (<2 is Negative)

One doc feels that the LTT figure is just borderline and therefore may not be fully indicative. The CD 57 value is at 12.9 and hence it is clear that there is an infection in the body. The LTT run last year had 0 values on both full antigen and Specf (this is some 1 year after completing antibiotic treatment. The Lyme IgG then (presume Immunoblot) showed 3 values - V1SEof 13.18, p58 of 0.84, p18 bafz of 0.8 and was hence classified as a grayzone.

A LLMD centre feels that it is Lyme but is unable to explain why the Western Blot is -ve and the LTT is just borderline. Awaiting the latest P-NK cell count but last year it was at 145 (60-700 being the normal range). Expect the latest count sometime tomorrow I hope.

If someone can please help out, it would be great as we are going crazy trying to find a suitable solution.

Dear Georgia, Thanks for the reply. Any idea of how to best improve detox?

Hi and welcome to HealingWell.

I have borderline LTTs as well and i am currently still under treatment. My LLMD in Germany said it's pointless to test for the LTTs again (i need to repeat the tests in 4 months), we will just test for co-infections levels.

I don't see a point in running more Borrelia tests, especially it your daughter has been positive for Lyme and received treatment. As you might know this is not a bacteria that can be successfully removed from the body (except for maybe the first months post infection). So (if it gets there) it does persist in joints, brain and eye (places where immune system does not reach very well) for the rest of our lives. So in this situation most LLMDs treat based on symptoms.

That being said, there is no such thing as a person with just Borrelia. All people infected do have multiple bacteria that cause the problem. The tick is a dirty needle, has many organisms that can be passed. The hardest to treat are Babesia and Bartonella. Has your daughter been tested for coinfections?

Are you familiar with Buhner's books about this topic ? Many of us get treatment using herbal supplements, for chronic lyme these work better than antibiotics, especially that you can take them for years without the major side effects of ABX. They DO WORK.
buhnerhealinglyme.com/

Because lyme disease is immunosupressive, when going into remission it is really wise to continue taking the two most important herbs that boost immunity against this bacteria, in lowest dosage. I plan to take 3xcat's claw + 3x jap knotweed /day for the rest of my life. They are good for general health, anticancer and good antioxidant sources and very low/no toxicity. One month of cat's claw can cost as little as $5. Knotweed is a bit more expensive, probably $10.

When it comes to docs, i would stick with the ILADS folks. IDSA are completely clueless about how to treat/manage the chronic form of this disease. They simply ignore it. It's a combination of poor research, bad tests, clever bacteria and a non-lethal disease (most of the time).

Post Edited (mpostelnicu) : 11/26/2015 3:12:24 AM (GMT-7)

Dear Ioana,

Thanks for the info. Will try and look this up now.

Does your daughter have any pain in the soles of her feet? Especially when she first gets up? That's a classic sign of Bartonella, otherwise Nero Lyme would explain those symptoms as well.

The fact that she went 2.5 years since stopping treatments shows that the Lyme was put into remission, but if she was under just enough stress of some type, it can reactivate.

I would agree that if you are nervous about using abx again, then one of the herbal protocols would be very good to start her on, and I too would suggest Buhner's.

funnies - Georgia Hunter mentioned detoxing. Go to the "New to Lyme?" thread (always at the top). There are a couple of posts that talk about detoxing.

Only way to get the toxins out is to detox. Headaches are the worst. I had one for a year once. Terrible for a kid.

If you read the posts there are also some of the members who are in remission but still take some herbs to keep everything in check because stress is enough to upset the balance. I'm pretty sure Traveler does but I'm sure other members will have more names.

Hope you guys have a good day,
Kim