Friday, July 27, 2012

Super bugs and immune responses

A thirty seven year old female presented for an evaluation at the end of 2010. She had previously been in good health until 18 months before the visit. She had been diagnosed with chronic fatigue syndrome and fibromyalgia by several other doctors. She had been informed that blood tests, including a Lyme test, had all been normal. She had recently moved back to Maryland from North Carolina. She had previous lived in Maryland 2007 to the beginning of 2009.

Her symptoms had included: fatigue, swollen glands, joint pain and swelling, headaches, nausea, vertigo, blurred vision, dizziness, loss of balance, facial twitches, tremor, memory loss, decreased appetite, muscle cramps, abdominal pain, flulike symptoms, night sweats, shortness of breath, numbness and tingling, disorientation, confusion, poor cognitive processing, random lactation, hot flashes and chills.

She is not an outdoor person although she has had many cats. She does recall walking barefoot through tall grasses on several occasions. There is no history of tick bite. There is no history of an EM (bulls eye) rash.

After 6 months of treatment, including 5 months of Rocephin she is feeling reasonably well. She is still weak but has good endurance. The fatigue is all but gone.  Cognitive problems have largely resolved. Muscles pains are gone. Overall, she is about 80% better.

Response to antibiotics is extremely variable amongst patients. Currently the combination of Tindamax and Levaquin have been very effective. The addition of Cortef seems to have been very helpful.
I would like to suggest that I(we) frequently do not know what we are really treating. We do not have a microsopic view of  tissues, the immunological responses, microbiological responses or cellular functions.

For example. From many quarters it would be assumed that I am treating Lyme, Bartonella and adrenal fatigue. Perhaps this is mostly wrong.

Regarding Lyme, we have no data regarding microbial resistance. A patient yesterday asked me if Lyme is a "super bug." Actually a good question. We know Lyme has a complex genome and we know Lyme should have the ability to develop drug resistance. Super bugs like MRSA and VRE have evolved the ability to resist multiple antibiotics. Efflux pumps within the bacteria pump out antibiotics of differing classes rendering these antibiotics to be ineffective.

Perhaps Levaquin works, and/or Tindamax, because the offending germs have not developed resistance to these antibiotics.

And Cortef. Treating adrenal fatigue? Maybe not. Patients with treatment refractory Lyme may have very high levels of cytokines such as IL6 and TNF alpha. These are potent mediators of inflammation. It is well know that one of the ways Lyme makes people so ill is because it causes  excessive inflammatory reactions. Steroids are the best way to tamp down these excessive immunological responses.

I really started writing this blog because of the patients measurable immune responses to the germ. Currently, the standard WB shows no reactivity but the C6 peptide, 1.55, is positive for the first time.  The WB sent to Stony Brook showed only 41 IgM and IgG bands.  One year ago, a Labcorp WB was positive for IgG bands (4/10) 66,58,41 and 28 and IgM band 23.  Six months prior to that, Labcorp found IgG bands (3/10) 66,58 and 41 and a positive IgM (2/3) 39 and 41.  Previous C6 peptides had been 0.4 and 0.7.

It shows that either the tests are completely unreliable or that immune responses are extemely variable over time. Maybe some of both.

17 comments:

Summer said...

I'm very interested in the effects of Cortef/Florinef on Lyme treatment. I wonder if people treated with these meds have a harder time overcoming Lyme?

I recently started taking them and they are helping my energy but are they really helping it or just covering up a symptom?

I notice a lot of Lyme patients seem to have the most improvement on IV's. Is it possible for people to get back to 100% on orals alone if neurological involvement is present?

Paula said...

In response to Summer's question: I had neurological involvement and have been on orals for 14 months. I'm doing really well - symptoms are almost gone. But....I started treatment only 5 months after my symptoms started. If treatment is delayed (sometimes by years), it is much harder to be cured of symptoms.

LYMEMJ said...
This comment has been removed by the author.
Curtis said...

The immune issue seems to be pretty complicated because, from what I understand, Lyme can involve both an overactive and an underactive immune response at the same time. Maybe thinking about it in terms of immune dysregulation (and a systems-oriented approach) is more appropriate. I recently read a paper where a Lyme patient who had an insufficient response to IV antibiotics was treated with filgrastim (an immunosupportive granulocyte stimulating medication usually used for cancer patients with depleted immune systems) in addition to IV antibiotics with great success. Here's the link: http://kops.ub.uni-konstanz.de/bitstream/handle/urn:nbn:de:bsz:352-opus-9814/Diss_formated_ENDVERSION.pdf

Mike Smith said...

Immune system is not easy to understand, people struggling from immune problems can only try and find a temporary solutions..but as technology grows one can expect a easy solution osteoarthritis carlsbad

Dawn Valler said...

I have Lyme symptoms and some doctors think I may have Lyme, however others don't. Do you know of a good doctor in San Francisco that I can see about possible Lyme?

Camp Other said...

Curtis, I think you are on the right track. I think immune dysregulation and a mixed immune response play a big role in how Lyme disease (and other tickborne diseases) play out.

LYMEMJ said...

I admire you deeply as a very knowledgeable gentle sharing teaching Doctor and we the people with Lyme Disease will do all we can to protect you as you have protected us by treating us and saving our lives! Hold on Dr, it could be worse, it could be Lyme!

Lucas Ribeiro said...

Hi, I want to share with you that The Biological Medicine Network (www.biologicalmedicinenetwork.org) is presenting the two day seminar "Perspectives on Lyme Disease: A Biological Medicine Approach" in New Bedford, MA on September 20-21 . It is also sponsoring an evening lecture with Thomas Rau, M.D. "Treating Tick-Borne and Chronic Infectious Diseases with Biological Medicine" in New York next October 8th.
If you're not familiar with Dr. Rau or biological medicine, please watch a previous lecture by him about Lyme disease: http://youtu.be/7DJRV3boH5A
Please help us spread the word.
Best,
Lucas

mercurylyme .wordpress.com said...

I have lyme, and had neurological involvement. I beleive I was initially under treated. Subsequently was treated with over 1 yr of various abx. I still have some cognitive problems and fatiuge. I have been addressing heavy metal toxicity with amalgam removal and chelation. I also had reactivated EBV,HHV6 virus. Do you think underlying toxicy is an issue with lyme?

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Richard Calvo said...

Hello Dr. - I was wondering if you had considered writing a post on the new Gallaxy diagnostics (www.galaxydr.com) blood test that the FDA just approved for Bartonella infections?

JeffGator said...

Dear LymMD,

Thank you for your amazing blog. It has been an incredible resource. I just recently discovered I had past exposure at some point to borrelia hermsii. My symptoms have gotten gotten worse. I live in Montgomery County and was wondering how I could treat with you. Thank you so much.
jffdawson@yahoo.com

JeffGator said...

One question I wanted to ask...can borrelia hermsii cause leukopenia (decreased white blood cell count) and/or lymphopenia (low lymphocyte count)?

I have both leukopenia and lymphopenia. The doctors are clueless as to what is causing it. I'm HIV negative and my doctors believe they have also ruled out cancer. The only thing that is coming up positive is a test for borrelia hermsii (tick-borne relapse fever). I do not know how long I've been infected but I suspect possibly years (for which I've never received treatment).

Cameron VSJ said...

Hi,

I have a quick question about your blog, would you mind emailing me when you get a chance?

Thanks,

Cameron

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Nicole Gayles said...

Thank you for such a great blog! I was diagnoses with Lyme in Aug. 2012, bit by a tick in May 2009 and pretty much sick ever since. Prior to being diagnosed with Lyme, I was treated with steroids any time I had a flare up. Once diagnosed with Lyme, I was told that steroids are not good to be taking. I have the typical muscle and joint pain, swelling in my ankles, legs, knees. So you are saying that it is ok to treat inflammatory problems associated with Lyme, with steroids?