Hi! My brother has had chronic Lyme for over ten years. He has lost his job, divorced his wife and has even been in jail. My brother has been seeing a Doc in DC who has been prescribing him drugs including Klonopin, lyrica, anti-seizure meds and many more. He just left the hospital from a three day stay because he was having seizures which the docs believe were caused from Klonopin. Does anyone know of a Lyme literate doc (neurologist, psychiatrist, infectious disease)in the San Diego area? Is anyone else taking Klonopin (6mg a day) for Lyme? Any help would be greatly appreciated. Thank you.
Hi Shannon, I'm sorry for the troubles your brother is going through, I hear of this happening to many of us, myself and daughter have lyme and co-infections, and my daughter was on klonopin as well as other prescriptions, she actually got worse while being on them, klonopin is a horrible drug, it is misused a lot for anxiety, and helps a lot of people w/seizure disorders, but for my daughter it caused terrible rage and she got herself into a lot of trouble being on it. You need to slowly wean yourself off of it otherwise you can have a seizure or damage yourself.
I've been to all types of dr's and wasn't getting better, I found some lyme support groups on yahoo, etc. and natropaths, and herbs, detoxing, diet, etc. and am feeling better from them, not out of the woods yet, but functional. Don't give up on your brother, the illness has taken him over, remember the other person that is inside of him, this disease can rob you of so much. You're a wonderful loving sister and if you ever need a sounding board, feel free to write to me.
Best,
Alicia
Anti-seizure medicines are very difficult to regulate and do require very close care and an occasional hospitalization. With the Lyrica, it becomes infinitely more difficult. You are trying to control nerve sheath pain which is likely the most severe an individual can experience. Any move towards self medication late or missed doses can upset a virtually almost impossible balance anyway.
If you are referring to Lyme Literate doctor as one who can handle the possible neurological complications and insult to your brothers immune system there is likely no better group in the area than Scripps-Ximed Medical group, which is located on the main campus of Scripps Memorial Hospital and University of California San Diego. They are very familiar with Post Treatment Lyme Syndrome
If you are looking for one who claims he can treat your Brother based on dubious lab tests and antibiotics as if it were active infection I can't recommend one.
Scripps has an 800 number: Call 1-800-SCRIPPS (1-800-727-4777) for a physician referral.
It's a good idea to give them a call and ask who they recommend for lyme disease.
Thank you so much for your nice note. We are hoping that his Doc will recommend that he get off Klonopin soon. What kind of detoxing/diet do you do? Thanks again for your kind response. Hope you are feeling good today!!
kittiecattie said:
Hi Shannon, I'm sorry for the troubles your brother is going through, I hear of this happening to many of us, myself and daughter have lyme and co-infections, and my daughter was on klonopin as well as other prescriptions, she actually got worse while being on them, klonopin is a horrible drug, it is misused a lot for anxiety, and helps a lot of people w/seizure disorders, but for my daughter it caused terrible rage and she got herself into a lot of trouble being on it. You need to slowly wean yourself off of it otherwise you can have a seizure or damage yourself.
I've been to all types of dr's and wasn't getting better, I found some lyme support groups on yahoo, etc. and natropaths, and herbs, detoxing, diet, etc. and am feeling better from them, not out of the woods yet, but functional. Don't give up on your brother, the illness has taken him over, remember the other person that is inside of him, this disease can rob you of so much. You're a wonderful loving sister and if you ever need a sounding board, feel free to write to me.
Best,
Alicia
Thank you so much! I will recommend this to my parents and hope to see some docs at Scripps!
tj1 said:
Anti-seizure medicines are very difficult to regulate and do require very close care and an occasional hospitalization. With the Lyrica, it becomes infinitely more difficult. You are trying to control nerve sheath pain which is likely the most severe an individual can experience. Any move towards self medication late or missed doses can upset a virtually almost impossible balance anyway.
If you are referring to Lyme Literate doctor as one who can handle the possible neurological complications and insult to your brothers immune system there is likely no better group in the area than Scripps-Ximed Medical group, which is located on the main campus of Scripps Memorial Hospital and University of California San Diego. They are very familiar with Post Treatment Lyme Syndrome
If you are looking for one who claims he can treat your Brother based on dubious lab tests and antibiotics as if it were active infection I can't recommend one.
Borrelia burgdorferi is neither gram positive OR gram negative. It has a weak reaction either way to staining. The whole concept of endotoxins from dying Lyme is completely bogus. Endotoxins are usually only produced from Gram negative bacteria. There is a rather interesting Clinical disease associated with C. difficile caused by antibiotic therapy that is the result of toxins.
If someone is "herxing" it isn't usually a good thing unless there is a a gram negative bacteria specifically being targeted. As none of the Lyme bacteria are gram negative, it is NEVER a good thing if it the result of Lyme treatment.
I agree with tj's assessment here. The grapevine can come up with some pretty wild theories that are not in any way scientific. It can be a real red herring for patients trying to find something that helps. Dead bacteria coming out through the pores of one's skin sounds particularly suspect to me.
I understand you are just trying to feel better and to help someone help feel better, Brazil. It is really difficult having health problems that chronic, persistent, painful, and a puzzle to doctors. More research is badly needed and better treatments, too. Sometimes symptoms may get better on their own, but it is human nature to look for reasons and to assign causes to the effects we see, though we may not necessarily hit on the right ones.
I have concerns about using Burrascano as a guide, as he has been charged with professional misconduct as well as gross incompetence by the state of New York:
http://www.casewatch.org/board/med/burrascano/findings.pdf
It is so easy for the internet to make theories seem valid, even if they are based on pure speculation rather than testable, observable, and measurable evidence. If enough repeated assertions get put out there, theories seem to acquire the status of truth, even if there are no solid facts to back them up. This can have very unfortunate consequences for patients.
Have you read about Wakefield's theories about the MMR vaccine and autism? His theories were discredited by the medical community, but received so much attention that if you google the MMR vaccine you can find many sites that insist that it causes autism, despite a complete lack of scientific evidence. Unfortunately, Wakefiled's theories were so widely publicized that parents in the UK and Ireland stopped vaccinating their children. The consequence? A steep increase in measles and mumps cases, resulting in needless deaths.
I understand that patients with chronic symptoms from lyme are searching for answers. I know people on this community are sick and in need of help. But I do not believe that Burrascano is the right guide. And it is concerning to me how many naturopaths rely on his theories.
The problem with Burrascano is he hasn't got a clue what he is talking about most of the time (BTW he has been censured in 5 in addition to New York) He has no training or education in the area he professes expertise and certainly no more knowledge about immunology/infectious disease than he got in training as a primary care physician.
He is sort of like the Powerball winner claiming to be a financial Guru, You can't argue they are rich.
The numbers in Lyme favor the Lyme Literate Docs, NDs and NPs:
- 70% get well with standard treatment but what happens with that 30% that don't?
- 70% get well in 6 Mos pf the 30% left that don't get will (or substantially improve) in 6 mos. the cast majority get well with in 1 - 4 years. There are a few who develop some other complications (about 5% of those who don't get well initially) that require additional treatment usually it is because of infection of Cerebral Spinal fluid or damage to the autoimmune system. Most of this group respond in some measure to the treatment.
- So all in all better than 97% of Lyme Patients get better on their own within 1 - 4 years. This include those treated by "Lyme literate Doctors" Pretty hard to not want to fork out the average 20 grand these guys charge for their antibiotic protocol with their high success rate. Of course you get the same rate by doing nothing and save 20g.
My concern is not that, I have blown a lot of money on a lot of things over the years (queue up picture of fast motor cycle) My concern is the high number of folks who are being harmed by Lyme Literate treatments.
Burrascano after facing medical boards in multiple states, murder charges in another has backed off, an quits a lot sooner than he used to. He was never in trouble for his treatment. it was OVER treatment that got him in a jam. Docs are seeing regularly patients who are having severe cognitive problems, seizures, liver and kidney issues and a long list of other irreversible ailments from over treatment that are debiliting or killing patients on a regular basis.
And as far as the "bugs" nothing special about them at all. In fact they are about the least special bacteria we come in contact with. You can read about it here. Yeah It was edited by the University of Montana. Sort of a natural as Dr. Burgdorferi mot only taught her but researched in the valley as well.
http://www.horizonpress.com/borrelia
The funny thing despite the fact if you are an NHL fan, you won't be seeing any games for a while as they are contemplating shutting down the league because of a mumps outbreak, is even after it was proven Wakefield made the whole thing up. people were convinced the anecdotal evidence was so strong, that he was right anyway - same with Lyme
Thank you so much for your help. Truly appreciated.
Brazil said:
Hi Shannon, I know you are not responding to me, but regarding detox, my NP told me to drink lots of lemon water, and water in general. The lemon helps detox the dead bacteria and endotoxins they release upon dying, plus helps "clean" the liver also. I squeeze probably 1/2 of a lemon per day in water and also in fruit/kale smoothies I drink. I also am eating pomegranate for the antioxidant properties it holds. I've heard thru the grapevine that eating high-salty foods and taking Vita-C with it, helps to get rid of the bacteria (the C and salt mixed does something but I'm not sure what) and I'm unsure if that is true but I have tried that, too, and I've also read that one should use the antibacterial soap one would use prior to surgery to get rid of dead bacteria as I've "heard" sometimes they even come out thru the pores of one's skin. I don't also know about this one, but since reading that, sometimes I use a salt-scrub in the shower that I bought for post-chlorine use, just to "scrub them away" " just in case." It "seems" to be working for me since I doubled my ceftin drug that I orally take. I have not experienced horrible herxing, but I know I must be and the bacteria must be dying b/c the pain in my tendons in my leg is gone. I sometimes get muscle twitches and brain fog, which can also be attributed to the herxing factor. Sorry for rambling.....anyway, lemons for sure! ;-)