Here is a patient who states he has been sick his entire life - seeing a parade of doctors for as long as he can remember. Childhood was tough and he was maladjusted. Diagnosed with: learning disabilities, ADD, depression and Asberger's syndrome at varying times. Always sickly, missing a lot of school. Abdominal pain, fatigue, fevers, colds, flus, headaches and other ailments. Now treated for depression and sleep apnea he feels he is not thinking as clearly for the last year. He notes: increased anxiety, trouble finding words, worsening depression, more ADD symptoms. He also admits to drinking too much and using marijuana about three days a week. Things have not gone well at work or at home recently.
He recalls removing a tick from his dog a few years ago - not sure what kind. He has some vague pains in his joints and muscles, occasional pins and needles in his hands and feet, some twitching around his eyes and occasional tremors. He grew up in Arizona in the 70s, moved here 10 years ago. And then someone said: get a Lyme test.
An LLMD sent extensive tests to IgeneX. Everything was negative except the Lyme Western Blot. He had IgM bands: 18,31,34. He saw an LLMD who diagnosed Lyme. He was treated with herbs and a month of antibiotics. It didn't help. He saw an infectious disease doctor who ordered a Western Blot through Labcorp. Only a 23 IgM showed up. He was told he did not have Lyme disease.
He now wants a third opinion - great.
A Western Blot from Stony Brook showed IgM bands 41 and 93.
His exam showed a mild postural tremor, otherwise normal.
OK, so maybe you are thinking he got Lyme by vertical transmission from his mother. Seems pretty unlikely in Arizona in the 60s.
The labs are positive for Lyme, right. All three labs found highly specific bands; they just didn't agree. Not even a little. Labcorp, 23 band, OspC. IgeneX 31,34, Osp A and B. Stony Brook 93 band, flagellum protein, only found in Lyme.
He didn't Herx.
I ordered a course of high dose antibiotics and asked the patient to return for a Lyme PCR in two weeks.
I am discouraged about Western Blots. All three labs use different kits and different procedures. I have noticed certain biases. Labcorp gets a lot of 23s. Stony Brook gets a lot of 93s. And IgeneX finds more 31s.
People can interpret the tests according to their own biases. The IDSA is wrong but all test results need to be interpreted with caution.
This is a frustrating case. The next test will likely be negative.
My answer: Lets fix the other stuff and then see what remains. He needs to be checked for: B12, Vit D, Celiac and a few others. Perhaps I can be persuaded to check: DHEAS, Histamine, Copper, Zinc, TIBC/ Ferritin, TSH and thyroid antibodies with new guidelines and screen for heavy metals.
Sorting out the chaff from the grain is not going to be easy.
I would be doing him a disservice if I treat for Lyme now.
Acupuncture and traditional Chinese herbal therapy would be much better than what I have to offer - along side Western psychiatric help.
10 comments:
Isn't it true that a lot of the problems Lyme sufferers have to deal with are due to auto-immune mechanisms running haywire, and as such similar problems can result from food allergies and intolerances?
Can't believe I am writing this - I have no qualifications whatsoever, but I just get this feeling reading this that it isn't Lyme at all, but perhaps there is a similar auto-immune trigger in the form of another pathogen?
My sister is suffering from Ulcerative Colitis. The amount of allergies and intolerances she develops over time is astonishing. In the end she can't eat anything until she is treated with Remicade / Infliximab. She can then normally eat the most important food types for a while. I fully believe a highly resistant pathogen is tormenting her system, but most of the problems seem to be triggered by auto immune reactions.
Lyme testing sounds like a black art. It must be incredibly frustrating to work with this every day.
What about a CD57 test? DO you place any vaue on that? I had all the symptoms of yme, ruled out everything else, and got a neg. test from Labcorp but could not afford to pay for any more tests out of pocket by the time we even started looking at Lyme. My CD57 was 19(though Labcorp) which the doc at the time said was indicative of chronic Lyme. I was treated as such, and after several rounds of abx and herbs and ultimately LDN I recovered. Do you look at CD57 at all?
The Lyme specialists in Augsburg, Germany use the CD57 as an important indicator of chronic Lyme - mine was low as well, and I was treated with Plaquenil & Clarithromycin which worked well.
Bands do come and go. Some antibodies may be tied up in circulating immune complexes as has been suggested.
There are differences in the assays based on strains used in the kits. The standard CDC kit used by Labcorp/Quest is based on the B31 strain. IgeneX mixes two strains for their test kits. I don't know what strains Stony Brook uses.
Test kits derived from different strains may express different bands with different intensity
As discussed at the 1994 Dearborn meeting: test kits with multiple strains may be more accurate.
These results may all be accurate.
Still, test only shows exposure not disease.
CD57s are very non-specific, like cytokine levels, C-reactive protein and sedimentation rates.
Something is wrong, but what?
Dear LymeMD,
I like your approach. in your complex patient a test that I think would be helpful to clear the muddy water is My Lyme Immune ID. I have found this to be helpful in cases where you are not sure of the diagnosis. Also Check it out. you could also throw in a CD 57 count for good measure.
Best, TL
I just joined the blog. And I am very interested in finding the name of this Lymemd doctor. And where he/she is located. Can you please tell me
call ILADS. They can help you find a Lyme specialist in your area.
http://www.ilads.org/
Off topic, but this is awesome:
http://www.cbsnews.com/8301-18563_162-57358994/calif-hs-student-devises-possible-cancer-cure/
See how cancer medicine is combined with nano-particles to deliver medicine directly to affected cells and leave other cells unharmed.
Surely this must be applicable to a lot of other diseases - if it works.
Why is the C6 peptide test not being considered in this scenario? It's obviously chronic if it is Lyme, so wouldn't C6 come back as something greater than zero?
It seems from my reading that a good WB with a poor C6 and vice versa in late term lyme is not that uncommon.
I mean, if you're throwing stuff on the wall, why not?
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