The saga continues - Lyme test etc.

[PIK]

I was in touch with my rheumatologist who told me to go to my primary care physician. To make a long story short, I had ASO titers of almost 1600 a little over a month ago. He gave me a 10-day course of 500 mg three times per day penicillin then once a day 500 mg which I've been on. I've been feeling a headache for about a month, back of neck pain, shoulder pain, just awful. My ears hurts. Slightly vertiginous and get lightheaded when I laugh. The severity of these symptoms waxes and wanes throughout the day, but they're pretty much always there.

 

The primary care doctor (this has been like my third visit this month) drew blood for a CBC today and wanted to test for Lyme because I told him I felt like I had meningitis. The thing is, I did go camping once months ago, and this is an endemic area, but I didn't remove any tics, and I didn't have bullseye rash.

 

I don't know what to think at this point. Is this Lyme? Is it the penicillin slowly killing the strep and a reaction to it? Does anyone have any input please. Also, how do they test for Lyme? Is it just a blood test? Will they need to do a spinal tap (OMG this scares me so much, just the thought freaks me out). Please help everybody.

[mdmom]

I would suggest also testing for co-infections. Ticks carry so much more than Lyme. Some of your symptoms(particularly the headache) could be linked to Babesia. LabCorp and Quest test for 2 strains: WA-1 (Babesia duncani) and Babesia microti.

[rowingmom]

Go to the ILADS website and find a ILADS-trained LLMD in your area. You will get the proper testing there, usually an Igenex Western Blot for lyme - Igenex tests for more lyme-specific bands than do other CDC approved tests. The CDC removed lyme-specific bands from their tests when people who had received the lyme vaccine began testing positive for lyme.

 

An ILADS-trained LLMD will treat on clinical symptoms alone. Many people find that they seroconvert to positive on these tests after some period of treatment with the proper abx. All of these infections are immune suppressive, and tests relying on antibody production are questionable.

 

mdmom is right - lyme is very rarely found on it's own, and it's usually one or more of the coinfections (bartonella, babesia, mycoplasma, ehrlichia, RMSF, etc) that are causing symptoms. In our case it was bartonella. These infections can all result in brain inflammation and menengitis-type symptoms, as bartonella did for us.

 

Our daughter actually tested negative for lyme (although she did react weakly (IND) to one of the lyme-specific bands), but positive for bartonella through Igenex. If we had stopped with the negative lyme result we would not have found bartonella and treated for it. Our LLMD knew enough not to stop at lyme.

[msimon3]

Many many people have Lyme who do not recall a tick bite or ring shaped rash -- this is a 20+ year old guideline that has since been shown to be a relatively poor clinical indication amid a modern understanding of the variety of symptoms Lyme disease, and possible coinfections, can produce.

 

Neuroborreliosis is an infection of the nervous system tissue by Borrelia, and causes a wide variety of neurological symptoms from the meningitic types you list to motor dysfunction to behavioral changes.

 

Lyme disease is a clinical diagnosis, so you should see a Lyme literate medical doctor (LLMD) and many here will recommend seeing one who is ILADS affiliated and will have a modern approach relative to doctors who practice strictly to a narrow definition set by the CDC in 1994. Your LLMD can diagnose Lyme disease based on clinical observations alone, as the diagnostic tests available suffer from high rates of false negatives and potential false positives.

 

A traditional Lyme diagnostic test, per 1994 CDC guidelines, would have you test positive on an Elisa C6 blood test first, then require you to have a select 5 IgG or 2 IgM positive bands on the Western Blot. A more modern approach would have you skip the Elisa outright, and either test positive for Borrelia-specific antibodies on the Western Blot or test postive for Borrelia DNA directly using a PCR test. Igenex and Stony Brook are commonly used for Western Blots due to their superior diagnostic approach, and Igenex also offers co-infection testing for Babesia, Bartonella, and Ehrlichia.

 

Labcorp and Quest are also ok, but please be aware that they only test for one variant of Borrelia burgdorferi (B31) whereas Igenex tests for two (B31, 297). Moreover, both of these labs test for fewer bands (Borrelia proteins) which makes them prone to show a less accurate picture than test from Igenex or Stony Brook.

 

Lastly, your LLMD should recognize that Lyme disease technically is infection from Borrelia burgdorferi, but many doctors have suspected that other species can cause illness similar to Lyme disease. There are 36 known species of Borrelia, and this year Borrelia miyamotoi was confirmed to cause disease similar to Lyme. Imugen has a blood test available for B. miyamotoi infections.

Edited September 25, 2013 by msimon3

[rowingmom]

Here is a comprehensive chart of lyme and coinfection symptoms:

 

http://www.lyme-symptoms.com/LymeCoinfectionChart.html

 

If your doctors are giving up on you, find one that will not. DD never had a spinal tap, nor did she require IV abx. Don't be afraid.