Thursday, December 18, 2008

Neuroborreliosis: another case

Reader seem to like case summaries. Here is one I saw today. This 58 year old man first presented to me 13 months ago. He had typical disseminated Lyme disease with neurborreliosis. He had a normal SPECT scan but the brain MR showed white matter disease. The radiology report indicated that the findings were characteristic of Lyme disease. Western Blots were IgG and IgM positive across the board. The C6 peptide antibody test was off the charts. Oral medications over a 7 month period of time produced up and down results with a positive trend. Persistent symptoms nonetheless included: joint pains, brain fog, memory loss, muscle weakness causing him to drop things, cognitive processing delays and even bouts of confusion, headache, dysphagia (trouble swallowing), poor stamina and other symptoms. IV Rocephin was started 5 months ago. At that point his work performance was poor and he was considering disability. He started getting better, slowly at first. Ups and downs with some disorientation marked the first month. After 8 weeks, his insurance cut him off Rocephin despite extensive documentation provided by me. The patient was determined to continue therapy and payed for treatment out of pocket. After 10 weeks, Levaquin was added. He continued to show improvement. He then reported one very good day! After 14 months Flagyl 500mg per day was added. Five weeks ago he reported two fantastic weeks. He was on Rocephin 2gm daily, Levaquin 500mg daily and Flagyl 500mg daily. The Flagyl was increased to 500mg twice daily. I saw him today after more than one year of therapy. He had been on Rocephin for 5 months. He now reported 5 consecutive fantastic weeks. This man who had seriously considered disability was 100% better. Gone were multiple cognitive complaints, pains, neuropathy, weakness decreased stamina and all the other symptoms noted above. He was back- in full clinical remission. Today we stopped the Rocephin and substituted Omnicef, 600mg per day. Follow up in 8 weeks.

11 comments:

jenbooks13 said...

Thanks. They really are fascinating stories even if I feel a little horrified as always by the amount of drugs and the slippery slope to the unexpected effective combination.

Lyme report: Montgomery County, MD said...

It is Friday. I had a long week, so am going to vent. I am tired of being criticized for treating patients aggressively with antibiotics.

It is a real disease. A very difficult disease. I treat it with real drugs. If herbs work for you, great. I have treated scores of patients who have wasted years- getting worse- seeing alternative practitioners who use herbs and homeopathic doses of antibiotics.

In my experience, Lyme disease becomes a lifestyle for patients are treated by CAM doctors. They spend their life savings, leave the doc's office with a shopping bag of placebos- sold by the doctor(which I consider unethical), and never get better. The patients end up playing the "sick role" for ever and the doctor gets a walking 401k plan. That is my opinion. When I see this over and over again- I AM HORRIFIED.

In fact, I saw a man today who has severe disseminated Lyme and is crippled by it. His family went into hock. The LLMD took every penny they had and then some. They spent more than $100,000 dollars. And he is not one iota better! Take that to your Lyme forum.

Starlings Preschool said...

Doc, Please don't consider stopping doing what you do! Aggressive abx therapy WORKS. I agree 100% about the alternative stuff keeping some practitioners in business. With this illness we have no choice but to go after it aggressively with abx. Most people in the Lyme community see the wisdom of this. WE NEED YOU. THANK YOU.

bugged said...

LymeMD thanks for finally saying that. I thank you for what you do. I know that comments from the one blogger who actually has any faith in the CAM docs won't discourage you but now maybe she will really leave the site! We can hope. Jenbooks13 you have now heard it from the source. You are on the wrong blog. Please go somewhere else. No only do you know that you annoy the patients but now you know that you annoy the doctor. What's wrong, your doctor does not have a site to communicate his thoughts with his patients? That's odd. They charge so much money for those phoney treatments. Many people go into remission using the amount of antibiotics that you have used. I know some. You may have just gotten lucky but are now hooked on the CAM, high tech love fest going on while docs stick that money right into their bank accounts and could not care less.
I've also seen one of those doctors and never bought into needing the IVvitimins or all the supplements he kept in the office closet so I was not there for long as he actually got irritated with me and told me that was why I was not getting well. I have heard from a former patient of the well known doctor who just wrote the Lyme Solution who had the same experience. When she did not succumb to the alt treatments he got angry and she left. They are greedy bloodhounds and have found a vulnerable source and it is unethical. People are strung along and they pay and they pay and there is no sound basis for their treatments. Most could not keep a practice going, or have actually lost their medical licenses but hide that fact, so they latch onto Lyme disease, where there is so much controversy, and they read a little and start a very, very profitable business. Hang in there LymeMD. We know you are the one really trying to help us.

sickofit said...

Thank you LymeMD for having the balls to take on the main IDSA and put it right out there. Don't let this little twirp get you down. Jenbooks13 you just find a CAM blog and stay here. LymeMD can erase your comments any time he wants and if he starts doing that,like I suspect, you will no longer exist in this blog. Please LymeMD, erase any comments by Jenbooks13. She does not respect you and you will see how fast she will just go away. Jen, what is the problem? Those high priced, pay on the spot, CAM docs don't have a blog so their patients can reach them or would they be too stupid to converse with about the scientifics of this disease. Oh, me no like greedy people that call themselves docs but are really leaches. When the keys (as all are individual) are discovered to treat lyme those docs will be long gone and very rich. Bye.

sickofit said...

Thank you LymeMD for having the balls to take on the main IDSA and put it right out there. Don't let this little twirp get you down. Jenbooks13 you just find a CAM blog and stay here. LymeMD can erase your comments any time he wants and if he starts doing that,like I suspect, you will no longer exist in this blog. Please LymeMD, erase any comments by Jenbooks13. She does not respect you and you will see how fast she will just go away. Jen, what is the problem? Those high priced, pay on the spot, CAM docs don't have a blog so their patients can reach them or would they be too stupid to converse with about the scientifics of this disease. Oh, me no like greedy people that call themselves docs but are really leaches. When the keys (as all are individual) are discovered to treat lyme those docs will be long gone and very rich. Bye.

dogdoc said...

You have a right to vent. This is a real disease of bacterial origin and antibiotics are appropriate in its therapy. If I had tuberculosis and someone proposed to treat me with hyperbaric oxygen and iv vitamens, I would laugh them out of the room. It would seem to me that the typical 6 to 12 months of three TB antibiotics in combination would be more appropriate. Unfortunately, this disease and its treatments are not as well described as TB, leaving those that actually want to treat it successfully to have to try different things to see what works. At least you find things that do work eventually- that sets you apart from many. Mainstream and CAM medicine would prefer that you suffered quietly as apposed to get better. It is a real disease with real signs and real suffering- it deserves the best treatment that you can come up with for it.

jpf said...

I have had Lyme for 7 y. I was an associate professor of medicine. After 4 years of misdiagnosis (as RA, thus on immunosuppressants), I was finally correctly diagnosed. Took 1 mo. oral levaquin, then 1-1/2 y oral Biaxin/Plaquenil. Relapsed w/ severe encephalitis 1 mo. after stopping. Alll cleared after 3 mo. IV Rocefin (self admin BID 4d. out of every 7). I was at the best I'd been but not well. I've read how you fell about CAM, but after 2 xcourses of a japanese form of apitherapy, I felt terrific--my husband said I was so smart, it was scary!--a joke, but a welcome one. Now I've relapsed badly again. My Lyme MD has resuscribed orall Biaxin/plaquenil. I've been on it 3 m w/o any perceptable improvement. I live in VT but am willing to travel. Can you recommend a very good Lyme MD w/ extensive experience w/ encephalitis? MAny thanks.

Lyme report: Montgomery County, MD said...

I recommend referrals through ILADS. I am sure that many herbal therapies may be effective, but I am not familiar with their use. I would think that all physicians who treat many Lyme patients see a lot of encephalopathy. The brain and nervous system is a primary are of attack. Frequently prolonged courses of intravenous antibiotics are needed in my experience. Insurance companies usually refuse to pay claiming that the treatment is "experimental." Many LLMDs are afraid to prescribe IV antibiotics for a variety of reasons. The stardard for neuroborreliosis remains IV Rocephin with? Zithromax and ?Flagyl. Every patient responds differently. Unfortunately, chronic Lyme may not be curable. The intracellular niche makes it impossible to completely eradicate the germs. Fortunately,patients can go into and stay in long term remission.
Good luck.

Starlings Preschool said...

Doc, do you rx Rocephin by itself initially, then add the cyst agent or L form agent?
Did this patient have co's? No mention of those. Was he all Lyme?

Suzanne said...

I love your blog, it is very informative and well written, thank you! I am curious about the follow-up on this one (I know it's old but maybe you remember anyway?). Do you always start with Rocephin before the Levofloxin & Flagyll? Or is the other way around just as good (Levaquin, Flagyll & then Rocpehin)? I have a friend who's starting IV abx in a few weeks and that's what his doc has laid out, so I'm very curious. Thank you again for this great source of info!