Friday, June 6, 2008

Neuroborreliosis is driving me crazy!

Another patient today. This is the bane of my existence. These patients are coming out of the woodwork. This pleasant young man is 41 years old and he can't remember anything (slight exaggeration). He still works. But his loss of short term memory and bouts of confusion are driving everyone in his life crazy. He went to pick up his daughter, but went to the wrong school. He gets lost and confused. All of his critical cognitive processing has slowed down to a snail's pace. He looks like an early Alzheimer's patient. He is 41 years old! He had Lyme disease 11 years ago. His doctors prescribed 3 weeks of Doxycycline and told him he would DEFINITELY be cured. It could of been me. It wasn't. I saw him a year ago for typical chronic Lyme. I treated his with oral antibiotics. His aches and pains went away. His fatigue and other subjective symptoms all cleared up. After seeing me he sought the advice of a practitioner of alternative and complementary medicine. He was chelated for high mercury levels. He brain has gotten progressively worse. Today I sent him for blood studies. I ordered a Brain MRI with contrast and a nuclear medicine SPECT scan. He is going to need IV Rocephin and his insurance company will refuse to cover it for very long. Like similar patients, his MRI will show various degrees of white matter changes in the deep part of the brain. If the radiologist is given a history of Lyme infection, he will report that these changes are compatible with Lyme disease. Otherwise the report will suggests such things as a demylinating process, IE MS, vascular disease of small blood vessels or changes related to migraine disorder. The SPECT scan will show non-specific changes in blood flow to the brain which are compatible with Brain Lyme, but not specific. His laboratory test will show various abnormalities. The ELISA test for Lyme will be negative. The 10 band Western Blot test will probably be negative, but show one or two reactive bands. The 28 band Western Blot from IgeneX will likely be positive, but may only show indeterminate bands at the critical locations. The CD57 count will likely be low. C4a and C3a comlement levels will likely be elevated, but this is not guaranteed. The C-reactive protein level may be high. The vitamin D ratio will likely be abnormal. Vitamin D OH 25 will be low and Vitamin D 1,25 will be high, perhaps in the toxic range. This is the most reliably abnormal laboratory marker of the illness, yet there are no published studies which support this. Co-infection antibodies may be present, or not. High antibodies against Chlamydia pneumonia are very common. If the patient is sent for psychological testing it will show a variety of abnormalities. These tests are expensive, time consuming and generally not covered by insurance. As a practical matter they are generally not done. A simple mental status exam performed by the physician will show abnormalities if the disease is severe, as in the case described above.

Published data from Dr. Fallon and Columbia University from October 2007, show in a placebo controlled trial that long term IV Rocephin makes a difference. Patients were considerably better after 12 weeks. However, all the improvement disappeared in 3 months when antibiotics were discontinued. A repeat course of IV Rocephin was associated with a return of the gains. The suggestion from this study is that very long term IV antibiotics may be the best option for patients with Lyme encephalopathy also called neuroborreliosis or simply Lyme disease affecting the brain.

My patients go the hospital to have a PIC line (percutaneous indwelling catheter) placed into a large vein called the vena cava. A home nursing agency arranges for medicines to be delivered to their homes. The medicine is dripped into the vein from a bag daily. The dose of Rocephin is usually 2grams daily, a substantial dose. Herx reactions can be severe. I like to continue the treatment until the patient improves. The insurance company my have other ideas. 12 weeks is certainly better than 4 weeks which not be at all helpful. Rocephin is great because it crosses the blood brain barrier and needs to be given only once daily. The main side effect is sludging in the gallbladder with occasional cholecystitis (gallbladder disease). A medicine called Actigal can be given to reduce this effect. I have not found this necessary but might use it in a patient with known gallbladder disease. Rocephin inhibits cell wall synthesis. That means it only kills spirochetes. In severe cases I add Zithromax and Flagyl. Both can be given orally or by IV. Typically I add Zithromax 500mg IV daily and Flagyl 500mg daily. There is no literature to support this IV cocktail but it makes good sense and patients seem to benefit. Of course I realize that my anecdotal reports are not a substitute for sound science. One must realize that many studies in medicine will never be done. This is why medicine is an art as well as a science. The Zithromax works by an intracellular mechanism and is able to kill L-forms of Borrelia. The Flagyl targets the cyst forms of Borrelia. It has also been shown that such a cocktail is necessary to treat Chalmydia pneumonia if this is also present. Many patients have incredible responses. But I am unable to predict how an individual patient will respond. Follow up SPECT scans can show improvement in cerebral dysfunction. A prolonged course of oral antibiotics must follow the IV treatment in order to avoid any back pedalling from the gains that have been secured. The total duration of oral therapy is also hard to predict, but is likely to be many months to years.

While all these patients suffer with Lyme dementia doctors are busy fighting about whether or not chronic Lyme exists. Doctors who treat these patients are still targeted for State Medical Board investigations. Most patients generally are never diagnosed and I am afraid the repercussions are horrible for so many that could be helped. I hope to raise awareness so that many of these unfortunate souls can have access to treatments that can be extremely beneficial.

9 comments:

lymebytes said...

Why did he go to a doctor for alternative treatment? Was he still having symptoms when he left your practice? Do you find any alternative treatments effective?

Lyme report: Montgomery County, MD said...

Many Lyme patients are frustrated and seek help in many corners. Most doctors who bill themselves as Lyme specialist rely heavily on alternative treatments. When you are desparate you will try anything. Perhaps some herbal treatments work. This is not my experience.

dogdoc said...

Thanks- just having someone listen and not think you are nuts helps. Hard to be a doc and watch it all happening and be helpless to do anything. LDA gave me three names- two insurance won't cover, one insurance would cover has the unworking number. ILADS has not returned my calls. In my husbands case, it is likely not to be all Lyme. Long standing MS like bouts of lethargy, optic and neuro signs since twentys- but not frequent and normal inbetween. Rest of badness came in last 6 years with typical Lymes signs. Underlying neuro stuff dramatically improves with Pred even now but then encephalopathy signs kick in in a week. Thats scary isn't it- Pred and Lymes. The things that get done sometimes. Question for you- can you have Lymes IgG/M in csf and not have Lymes? IgG bands 58, 39, 18 positive and Igm band 23 positive. Again, this is csf not serum. Can't find guidelines for interpretation of csf. Second question, do chronic lymes folks with brain involvement ever get better temporarily with oral antibiotics? I mean can you hold it at bay and clear up thinking with oral doxy or something to keep someone able to work while waiting on other tests. I suspect you guys have had to treat people without insurance orally even when you wanted to do differently. What is the range of responses? I have a neuro who is willing to go oral while big specialists get their act together. This neuro doesn't ever treat Lymes disease and doesn't know much about it.mean can you hold it at bay and clear up thinking with oral doxy or something to keep someone able to work while waiting on other tests. I suspect you guys have had to treat people without insurance orally even when you wanted to do differently. What is the range of responses? I have a neuro who is willing to go oral while big specialists get their act together. This neuro doesn't ever treat Lymes disease and doesn't know much about it.

Lyme report: Montgomery County, MD said...

CSF is as good as serum. Many researchers, including those at Columbia do CSF C6 peptide index as well. The 23 band is very specific. It reacts to Osp C. The 39 band is also specific. It is hard to get positive culture or PCR of CSF. Lyme can do everything that MS does. Some think that a lot of MS is caused by Lyme. Do some research on this. Some people with brain involvement respond better to oral antibiotics than might be anticipated. Everyone reacts differently. Predisone makes everything better for a while. Lyme related MS might have a large autoimmune component. In a case of molecular mimicry antibodies directed against Lyme might also react with neural tissue. MS seems to be triggered by a wide range of microbes. Look up Weldon's work on MS and Chlamydia pneumonia. The most widely used MS drugs, alpha and beta interferon are known for their anti-viral properties. Patients treated for Lyme have had MS go into remission. Even WMD on MRI scans has improved, or at least stabilized. Sorry to be negative but "Big specialists" are the last ones who will buy any of this. You need an agressive LLMD. I won't give my name but can suggest Jemsek and Stricker. No, they don't take insurance and charge a mint. Call ILADS again. Incidentally, there are better oral therapies than doxcy.

Sonia said...

I have a CD 57 and just started tx after 8 yrs of undiagnosed lyme. ALso, just found out I passed it on to my 2, 5 and 7 yr old kiddos since I didn't know why I was so sick all this time after 18 specialists and dx with lupus, mixed connective tissue disease and sclero-derma.
I'm on ceftin, doxy ND RIFAMPIN AND CAN'T BELIEVE how much better i feel.
Question: what do you think about C3A and C4A in relation to Cd 57?
I would like to get the C 3-4A done but I don't know wht to expect.
I don't think I had those disorders i was dx with as it never really fit but i had the antibodies of all of them but negative ANA and c-reactive.
I have 7 bands for current infection meeting CDC criteria.
ow reliable is CD 57 to measure progress?
My daughter's Cd 57 is 18 and also has 7 + bands with ehrichionosis.
Any input as to when to get another Cd 57 for tx progress? and if you have a preference for cd 57 or c 3-4a? My hubby is also positive with 4 bands, his cd 57 is 185! but feels very fatigue all the time...
Thank you. :)

Lyme report: Montgomery County, MD said...

After ordering and reviewing hundreds of CD57 levels I have discovered that this test is not very useful. Many things affect this parameter.

C3a and C4a are markers of inflammation. They are more sensitive than sed rate or CRP. They may be helpful in evaluating the degree of inflammation. They also have limited clinical value.

The most important gauge of disease activity is symptoms and associated physical findings.

krisd said...

After years of dealing with neuro-like chronic Lyme symptoms (word loss, general visual darkening, memory loss, word substitution, vibrating muscles, etc) I found that if I eliminate gluten and dairy from my diet, the symptoms are greatly decreased. Are there any other foods that cause this particular inflammation that should be avoided?

Mario. said...

The combination of antibiotics IS a scientific method and is also very logical.
It is also a way how to prevent development of antibiotic resistance.

I think it was first used with chloramphenicol, which extremely efficiently breaks some paths in the bacterial development cycle, but in combination with another antibiotic disabling another bacterial functions the effect was still way better.

Just an example from microbiology for 2nd year (technical university).

Tatter Salad said...

FEB2014
Variability in insurance coverage continues. Those that are popular from Dr.'s point of view may be TERRIBLE from a Nerroboriollis patient point of view. All the "Blue-" ones are bad news; while UnitedHealthCare supplemental covers extremely well. - Have had 14 weeks IV Roceph no problem; which is a good start.