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Monday, February 9, 2009

Lyme Dementia, Namenda, MS, A bug, and Radiologists

A 53 year old showed up at my door a little more than 2 years ago. He had been diagnosed with Lyme disease and was looking for help. He had already been ill for more than 3 years. He suffered with severe pain- on serious opiates. He had neuropathic pain- including a relentless trigeminal neuralgia. To date, this has persisted. He had already received 40 days of IV Rocephin and 30 days of oral antibiotics for CDC positive disease- to no avail. I took him on- a challenge. We have been through ups and downs with courses of Rocephin and oral antibiotics. His cognitive issues have been very worrisome and not improved until recently. His mother died of Alzheimer's disease and he sees the same syndrome in himself. Lab testing has shown consistently positive antibody WB bands, both IgM and IgG. He is also ELISA positive, for what that is worth. His C6 peptide has consistently been high as well. This is of some interest since Immunetics- the makers of this assay- claim that one sees a 4 fold decrease in C6 titers after successful treatment of Lyme disease. Perhaps his most interesting finding is his Brain MRI. It shows "deep white matter lesions bilaterally, consistent with the clinical diagnosis of Lyme disease." The radiologist notes that the lesions are not in a distribution typical for demyelinating plaques. (MS).

After trying many therapies, with mediocre results, I decided to try something novel for his dementia. His significant short term memory loss, bouts of mental confusion and aphasia were similar to presentations seen in the early to moderate stages of Alzheimer's disease. This is something quite familiar to me; I spent 15 years as the medical director of a large Nursing Home at one time. Based on the notion that Lyme dementia is related to glutamine sensitivity- as seen in Alzheimer's disease as well, I prescribed Namenda. This made a dramatic difference and has perhaps been one of the most helpful therapies for this most challenging patient.

Recently I sent a blood sample to Clongen for a wet mount. His blood, like that of so many other Lyme patients, has numerous, highly motile, extracellular organisms.
Clongen's attempts to sequence the "bacteria" have failed. It does not amplify with any of the known universal primers for bacteria used in PCR assays. Attempts to culture it in various media have also failed. Perhaps it is not a bacteria, but a tiny parasite of some kind. Clongen plans to test for this possibility as well.

The mystery of the motile organisms for now, remains unsolved.
There is no evidence that it is any known bacteria including a relative of Bartonella or a relative of Pseudomonas.
It is not killed with a plethora of antibiotics and anti parasite drugs.

Today this patient told me that a doctor friend said he should have a spinal tap to rule out MS. As previously discussed, there is no diagnostic test for MS. Myelin basic protein can be measured in the CSF- it is a marker for destruction of myelin- but it does not diagnose MS. Based on his MRI- it would not be unexpected to find MBP in his spinal fluid. Actually, I recommended that he see his neurologists. There is no research regarding the use of typical MS therapy in neuroborreliosis patients. It is possible that interferon therapy might help. Other, less commonly used MS therapies, including plasmapheresis and IVIg have been recommended for Lyme patients.

My final musing here is: "What do radiologists think?"
Infectious disease physicians, rheumatologists and neurologists dismiss the notions that such patients are suffering with neuroborreliosis. Many have proposed a Post-Lyme autoimmune disorder. The radiologists have not been steeped in this dogma. They call MRIs and SPECTs all the time: "Compatible with Lyme disease." They see the evidence in black and white; from my discussions with radiologists, they believe in chronic Lyme disease. They do not diagnose Post-Lyme. Apparently neuroborreliosis has not been censured from their text books. They in fact know that neuroborreliosis exists and that it has been well documented.


Seibertneurolyme said...

Thanks for the update on the mystery bug even if it is very discouraging news.

Wondering if Clongen has investigated the possibility that the mystery bug could be nanobacteria? Hubby tested positive for that 2 or 3 times about 5 years ago. Very few antibiotics have any effect on nanobacteria because of the biofilm and the calcification involved.

Also wondering if the new Bartonella culture medium developed by the vet in North Carolina has been tried with the mystery bug?

sicklywoodmancraig said...

Touche, does that mean that all the radiologists must undergo investigation as well?

sicklywoodmancraig said...
This comment has been removed by the author.
dogdoc said...

Seibertneurolyme- How is your hubby doing? I never heard back from you and don't know where your email went in my address book. Have you ever had the PCR for the motile Bartonella clarridgeiae (the other feline species) done on your hubby? They have it at Medical Diagnostic labs in New Jersey. I was considering it, but didn't want to waste the money if I was barking up the wrong tree so to speak.

dogdoc said...

Doc- there is a series of published case reports from Europe of neuroborreliosis that were unresponsive to IV Penicillin and IV Cephas - these patients subsequently responded to retreatment with IV sulbactam/cefa combination. Perhaps in some strains, that multidrug efflux pump they found is more active?

Seibertneurolyme said...


Hubby is a full-time job!!! My husband Steve has required various IV meds to treat his Lyme, babesia, bartonella and/or the mystery bug for 6 of the 8 years he has been ill. I am the one who has to medicate him in the middle of the night or whenever he has a severe symptom attack. Finally after 8 years I no longer have to get up multiple times every night to administer meds.


Sending you an e-mail.


Not all radiologists are so enlightened. Hubby has had 10 plus MRI's. He has 4 or 5 brain lesions or white matter hyperintensities. One report reads similar to your patient's. Other reports range from "normal for age" to migraines to possible demyelinating disease to ischemic changes.

Of course the neurologists put their own spin on the reports and say anxiety or depression etc. since it is not M.S.

Lyme report: Montgomery County, MD said...

I concerned neurologists called me yesterday. A patient had diffuse white matter disease and was concerned about the possibility of Lyme disease. He didn't even know what I was looking for. He was appalled that doctors denied the existence of Lyme disease. His wife had Lyme and ahd required long term antibiotics. Change, unfortunately, seems to require that physicians and their families be afflicted with chronic Lyme.

gale said...

About the unknown extracellular organisms.
Wouldnt it be possible to ask CDC to look into the mystery?

Unknown said...

Could the mystery bug be Chagas?

Anonymous said...

My mom has lymes but she got it 20 years ago.....there was never a positive test for it however....its definitely chronic now....its heartbreaking...we are in Canada where it is denied/not acknowledged...are there tests in the states now that can prove she has it, if only for my own peace of mind? Thank you so very much, sincerely Melanie