Below is an excerpt of an interview from Dr J (SC) a highly respected Lyme literate infectious disease expert. He promotes pulsed therapy- which I am currently doing (IV Claforan for 3 days every 3 days). I am doing better (better energy, mood and less sweats)and it is nice to get breaks off antibiotics to rebuild my liver (using acupuncture and Chinese herbs) and gut(lots of probiotics/goat milk kefir, vitamins and minerals).
Here's the interview:
What are some of the most important clinical observations and treatment recommendations you have made with regard to Lyme Borreliosis Complex?
Dr. J: What I learned a few years ago is that you don't have to treat every day. And with my HIV and infectious disease background, I learned the virtues of combination therapies. When you're dealing with a complex group of infections, there's no one drug that's going to satisfactorily handle the infection unless you're not that sick. It's all about putting your immune system back in charge. And to the extent that you can eliminate the source of the immunosuppression and your immune system
Everyone who's trapped by this illness needs nutritional support, metabolic support, and they need antibiotics. Some people are negative about antibiotics, but you can't evaluate antibiotic therapy in a vacuum or as 'all the same'…that's patently intellectually dishonest. We are, after all, treating multiple, stubborn infections in an immunocompromised host where, by definition, the immune system cannot handle the problem. And our goal is not to see how many days of antibiotics we can administer, but to administer the fewest days needed in order to restore immunologic control. Towards that end, we need to understand the triggers to keep patients out of situations that are going to perpetuate the patient's chronic illness and/or make it unwise to attempt therapy until these destabilizing stressors are reduced, whether the stressor is as basic as a bad support system or involve psychiatric, pain or sleep issues.
In treatment models, I've learned that pulsing makes sense, and I think everyone who's really sick has multiple infections. When I treat the three major infections, which are Borrelia, Bartonella and Babesia, and do that in a certain sequence and in a certain combination, people get better. And I think it's very important for people to go off therapy on an intermittent basis for one or two weeks at a time. Those windows are very important times to see how much immunologic security they have. Patterns develop, and the better the patient is, the longer they can go off drugs. For many years now, we have learned to pulse combination antimicrobial medications in certain patterns, and I have modified our clinical approach from learning the tempo of the disease.
Often you learn more about your patient when they're off treatment than you learn when they are on active treatment. These 'holidays' provide valuable windows for observation and after a time, you learn that cycles of therapy and the way they are sequenced show reproducible patterns of response. You also learn a lot from aspects of the treatment period, whether it's being on treatment, when it's the time to take Flagyl, and certainly the time that they're off treatment is a very important window for you to see how the patient is doing immunologically. And once you learn patterns and understand them, then you know when to intervene and when to back off. One of my patients said, "You're doing a dance with this disease, aren't you?" That's not a bad analogy.
I learned a long time ago that the most common reason for people not to get better is inadequate treatment of co-infections. It's very important to address the co-infections and to do so in an overlapping way, so you're not just treating one thing and then going on to treat something else. I only treat three days a week whether it's oral or IV, and have been doing it this way for at least five years, and exclusively this way for almost three years. And on all my programs, I give a week off of therapy on average every two to four weeks. I don't do it so much at the beginning, but after we get into it, patients get immunologically revved up.
In treating patients at the clinic, we are constantly striving for a balance point in terms of clinical efficacy and manageable toxicity, the latter being an inevitable sidebar to the highly immunogenic and inflammatory lipoprotein storm we see with Borrelia lysis. When the immune system activates, a patient can actually get more toxic, so we have to balance that. It's part of the art of medicine in terms of learning how to balance the toxicity generated and the fact that the patients need to detox. And I prefer to think there's a 'back door' to this illness as regards to the detoxification issues. If the 'back door' is closed, patients may remain unwell for protracted periods. Without question, there are considerable variations in the segment of the population with this illness who are going to be very sick, in terms of the ability to detoxify. This, in fact, may be as critical to outcomes as the infectious load and immunologic/genomic factors. That's the way it was with HIV, too, in a sense.
Tuesday, June 23, 2009
Sunday, June 21, 2009
Confirming Lyme
At a recent conference the medical director the Igenex medical director recommends doing "primed PCR urine tests if western blot tests are inconclusive. Antibiotics drive the Borrelia into the bladder where they can be detected in the urine. It is also a good clinical trial as you will see if there is any herxing or symptoms while on or immediately after the antibiotics. Be sure to keep a good diary of symptoms- headache, brain fog, fatigue, aches during these days. Your doctor should call Igenex (1-800-832-3200) so you have the correct forms and containers. There are many protocols used some recommend 3 days of collections or 5 days with 3 specimens sent. Here is a typical protocol:
Take Ceftin 500 mg twice daily with Zithromax 250 mg twice daily and collect urine for 5 days. Collect and send 3 separate urine samples during these days to Igenex for PCR tesing.
Igenex actually recommends repeat testing if initial test are inconclusive ie only one specific band is poistive. If you retest be sure to ask your doctor to check for 31kDa box as this will increase specificity. Your doctor must check this off on the back of the requisition paper or it will not be done ( I didn't know about this for 3 years and I'm a doc). 31kDa is highly specific for Lyme and can help clinch the diagnosis in "iffy" cases. If money is an issue and insurance won't cover repeating western blots- just do the urine PCR with antibiotics as it give both a clinical and lab diagnosis.
Take Ceftin 500 mg twice daily with Zithromax 250 mg twice daily and collect urine for 5 days. Collect and send 3 separate urine samples during these days to Igenex for PCR tesing.
Igenex actually recommends repeat testing if initial test are inconclusive ie only one specific band is poistive. If you retest be sure to ask your doctor to check for 31kDa box as this will increase specificity. Your doctor must check this off on the back of the requisition paper or it will not be done ( I didn't know about this for 3 years and I'm a doc). 31kDa is highly specific for Lyme and can help clinch the diagnosis in "iffy" cases. If money is an issue and insurance won't cover repeating western blots- just do the urine PCR with antibiotics as it give both a clinical and lab diagnosis.
Tuesday, June 16, 2009
The Yin and Yang of Lyme
I have spent my professional life merging East and West and feel that this is an area of Lyme treatment that is unrecognized. Most Chinese medical practitioners claim that antibiotics are not needed and most Western doctors fail to recognize the problems such as blood stagnation, organ dysfunction,and yin and yang imbalance that results from both the infection and from multiple long term antibiotics. I firmly believe that to become well you can and should combine treatments. This is how I treat hormone imbalance and now because of my illness am learning to do so for chronic Lyme.
I have been taking IV Claforan for 3 weeks now and have felt much better…my spirit and energy improved within days of starting treatment. One of the known side effects of Claforan is to lower the blood counts. As I progressed in my therapy I began to have increasing night sweats, uncontrolled tearfulness and sadness and increasing fatigue despite more rest. Most LLMD’s would say, “Great you are herxing.” But what is herxing really?? I understand that Herx reaction is the body’s reaction to dead bacteria/spirochetes but I also recognize that according to Chinese medicine it is blood/yin/Qi deficiency/liver stagnation, etc.
As I felt more unwell my liver function tests began to rise and my white blood cells began to fall. So I went to my Chinese Herbalist in Chinatown (Boston) and asked who the local acupuncturist is. (Doctors will not survive long in Chinatown if they are not successful with patients). Dr W (who takes insurance, so I pay only my $20 copay), has been practicing for over 25 years. I saw him yesterday. He was immediately angered by my state of health. He carefully explained, “your Yin and Yang are so very weak, and out of balance-stop the antibiotics.” (I was infusing during the exam!). He performed acupuncture and prescribed herbs to balance my organs ($17/week, told me to walk every day, sleep by 10pm, eat more vegetables and less meat and do less. I am used to merging modalities and I know that I will (for now) continue the antibiotics but I will also get my yin and yang balanced.
When I returned home my LLMD has left a message to stop antibiotic infusions because the white cell counts were too low. We discussed my theory and she agreed to adding Chinese Herbs and acupuncture to improve my kidney and liver yin, which will help my counts.
I will keep you posted- but no tears since acupuncture and clear happy head this morning. I will also post here the signs and symptoms of yin/blod and Qi deficiency. The symptoms look (and feel) a lot like Herx reactions…night sweats, tears, dizziness, heat intolerance…
I am do plan to transition off IV antibiotics in the upcoming months (hopefully) - they have done me good but I believe they should not be used long term. I will have a Bicillin injection today to prepare for IV withdrawal. I spoke with Dr S (Maryland) who says that he has less relapse when stopping IV using Bicillin injections in the last weeks of IV and then continues Biciillin (often with Omnicef) after the IV is discontinued. While I do this I will continue to get weekly acupuncture and boil my somewhat ghastly tasting herbs to restore my yin, yang and spirit.
I sincerely hope that this is not confusing to people. It is important to repair/restore the body while taking antibiotics and most "Chinatowns" throughout the world have skilled doctors. I trained in Australia with a Chinese doctor, in Melbourne’s Chinatown. The herbs are ancient and universal and they (the Chinese) have been treating spirochetes (Syphilis) for centuries. We have much to learn from them, and vice versa
I also believe that one does not have to spend a life’s saving to be well. I have lived with Lyme disease most of my life- lived it fully using combined treatments and I plan to live a long full life beyond today in the same way.
I have been taking IV Claforan for 3 weeks now and have felt much better…my spirit and energy improved within days of starting treatment. One of the known side effects of Claforan is to lower the blood counts. As I progressed in my therapy I began to have increasing night sweats, uncontrolled tearfulness and sadness and increasing fatigue despite more rest. Most LLMD’s would say, “Great you are herxing.” But what is herxing really?? I understand that Herx reaction is the body’s reaction to dead bacteria/spirochetes but I also recognize that according to Chinese medicine it is blood/yin/Qi deficiency/liver stagnation, etc.
As I felt more unwell my liver function tests began to rise and my white blood cells began to fall. So I went to my Chinese Herbalist in Chinatown (Boston) and asked who the local acupuncturist is. (Doctors will not survive long in Chinatown if they are not successful with patients). Dr W (who takes insurance, so I pay only my $20 copay), has been practicing for over 25 years. I saw him yesterday. He was immediately angered by my state of health. He carefully explained, “your Yin and Yang are so very weak, and out of balance-stop the antibiotics.” (I was infusing during the exam!). He performed acupuncture and prescribed herbs to balance my organs ($17/week, told me to walk every day, sleep by 10pm, eat more vegetables and less meat and do less. I am used to merging modalities and I know that I will (for now) continue the antibiotics but I will also get my yin and yang balanced.
When I returned home my LLMD has left a message to stop antibiotic infusions because the white cell counts were too low. We discussed my theory and she agreed to adding Chinese Herbs and acupuncture to improve my kidney and liver yin, which will help my counts.
I will keep you posted- but no tears since acupuncture and clear happy head this morning. I will also post here the signs and symptoms of yin/blod and Qi deficiency. The symptoms look (and feel) a lot like Herx reactions…night sweats, tears, dizziness, heat intolerance…
I am do plan to transition off IV antibiotics in the upcoming months (hopefully) - they have done me good but I believe they should not be used long term. I will have a Bicillin injection today to prepare for IV withdrawal. I spoke with Dr S (Maryland) who says that he has less relapse when stopping IV using Bicillin injections in the last weeks of IV and then continues Biciillin (often with Omnicef) after the IV is discontinued. While I do this I will continue to get weekly acupuncture and boil my somewhat ghastly tasting herbs to restore my yin, yang and spirit.
I sincerely hope that this is not confusing to people. It is important to repair/restore the body while taking antibiotics and most "Chinatowns" throughout the world have skilled doctors. I trained in Australia with a Chinese doctor, in Melbourne’s Chinatown. The herbs are ancient and universal and they (the Chinese) have been treating spirochetes (Syphilis) for centuries. We have much to learn from them, and vice versa
I also believe that one does not have to spend a life’s saving to be well. I have lived with Lyme disease most of my life- lived it fully using combined treatments and I plan to live a long full life beyond today in the same way.
Saturday, May 30, 2009
Life Is Good Intravenously
Okay, I never in my wildest dreams thought that I would end up with a central PICC line getting IV Claforan but I am, and I do, and I am happy to report that I am at last feeling like my old self. I wake up with enthusiasm for life. I have energy to do things. My night sweats are almost completely gone. I am experiencing some flare up of dental sensitivities and shoulder pain and when treatments began I had numbness and leg pains, but nothing too bad.
Getting the intravenous line was interesting. I could not go to the local community hospital as they had recently revoked hospital privileges for a physician referring patients for PICC lines to treat chronic Lyme. This is the same hospital who's infectious disease director had informed me that he did not believe in chronic Lyme.
So I went to another hospital 5 miles away. Fortunately this hospital was Lyme friendly. The staff were understanding and accustomed to seeing Lyme patients for PICC lines. It was so nice to be treated like a normal patient, to have people interested in my symptoms and what treatments I had been doing. It was amazing to feel "cared for."
One of my hospital nurses mentioned that she had had Lyme, but had been "treated." When I asked her if she was all better she mentioned that since her infection she had suffered from anxiety and trigeminal neuralgia that was not improving. When she saw that I was being treated for trigeminal neuralgia from Bartonella she took information to get tested again.
The visiting nurses report to me that approximately 1/2 of their IV patients are Lyme patients.
Getting the intravenous line was interesting. I could not go to the local community hospital as they had recently revoked hospital privileges for a physician referring patients for PICC lines to treat chronic Lyme. This is the same hospital who's infectious disease director had informed me that he did not believe in chronic Lyme.
So I went to another hospital 5 miles away. Fortunately this hospital was Lyme friendly. The staff were understanding and accustomed to seeing Lyme patients for PICC lines. It was so nice to be treated like a normal patient, to have people interested in my symptoms and what treatments I had been doing. It was amazing to feel "cared for."
One of my hospital nurses mentioned that she had had Lyme, but had been "treated." When I asked her if she was all better she mentioned that since her infection she had suffered from anxiety and trigeminal neuralgia that was not improving. When she saw that I was being treated for trigeminal neuralgia from Bartonella she took information to get tested again.
The visiting nurses report to me that approximately 1/2 of their IV patients are Lyme patients.
Thursday, May 21, 2009
Short term Intravenous for Bartonella
After 5-6 weeks of Rifampicin and doxycycline and Azithromycin, much improved but not fully better. Symptoms that have improved: brain fog, memory, ambition, mood, shoulder pain and dental sensitivities. Initially all of these symptoms worsened but now are better than before Bart treatment. I have been more funcional from 10 am to 3 pm- but the nights are still horrible.... night sweats and cold chills with joint pain and a feeling of being poisoned. My mood had been great on Rifampicin but after doxycycline was added it gradually worsened. This is the second time that doxycycline has caused severe depression in me and when I looked at the literature there are clear reports of doxycycline-induced depression and psychosis.
I had (phone) consult with Dr S and he has advised that I do 4-6 weeks of IV Claforan, in addition to Azithromycin Monday through Friday and Flagyl on the weekends. He feels most of my symptoms are Bartonella and Claforan is much better for Bartonella than other IV drugs. He said the fact that I am having the sweats within hours of the Rifampicin and the hypersensitivities in my nerves (teeth) and mood variablity point to Bartonella. He is seeing improvements in patients with Bartonella symptoms with this protocol......I firmly believe most of don't get better because of untreated co-infections- particularly Bartonella.
I am having my line put tomorrow. I will continue to do Zhang herbs and my homeopathics. He also recommends Transfer factor which I am adding- will keep you posted.......ps I never thought I would do an intravenous but feel like it's time, for a short period.
I had (phone) consult with Dr S and he has advised that I do 4-6 weeks of IV Claforan, in addition to Azithromycin Monday through Friday and Flagyl on the weekends. He feels most of my symptoms are Bartonella and Claforan is much better for Bartonella than other IV drugs. He said the fact that I am having the sweats within hours of the Rifampicin and the hypersensitivities in my nerves (teeth) and mood variablity point to Bartonella. He is seeing improvements in patients with Bartonella symptoms with this protocol......I firmly believe most of don't get better because of untreated co-infections- particularly Bartonella.
I am having my line put tomorrow. I will continue to do Zhang herbs and my homeopathics. He also recommends Transfer factor which I am adding- will keep you posted.......ps I never thought I would do an intravenous but feel like it's time, for a short period.
Monday, May 11, 2009
Morning Blues
So here is the morning dilemma for most of us. We are on treatments- herbal, antibiotics, supplements. We are doing better i.e. we can think, our headaches are not keeping us in bed unable to speak, we can eat though most foods are joyless, we can tolerate some noise and light, we are doing okay. Nights are still hellish episodes of heat and cold and sweats and aches. Your family looks at you in the morning, gauging where you are, how you are. Should they ask? Should they offer? So you say it, "I'm okay." What does that mean? Will you still get some help? Will they understand that you still feel as though you are fighting a flu with a touch of madness? Do you take Motrin or Nux vomica, up your vitamins C, or try that inspirational tape that helped so much 3 months ago? Do you go online to see who is posting a new hope or will that just depress you? Are you fighting your daughter's cold or is it the Monday blues? Is it a one year anniversary of treatment or is it the middle of a new protocol designed to kill cysts and 2 co-infections all in one fell swoop. Do you need an IV or a vacation? You are not bad, but you are not great. The weird thing is that if I can fight and power through and not think too much today will be okay. My mornings are like this.
Saturday, May 9, 2009
Catching a Cold: A Good Sign?
I was told (and experienced) that when you are very sick (with Lyme/Co-infections) your body will not recognize most viruses. The up side of this is that most people with chronic lyme (and chronic fatigue for that matter) do not catch colds and flus. Their immune system is too dysfunctional and overwhelmed to bother recognizing (trite) viral infections.
I view Lyme as a disease with layers. Until you treat Babesiosis and Bartonella you cannot begin to really rid the body of Lyme. And, until Lyme and Co's are treated, you can not get at Mycoplasma, and other chronic viruses harboring inside your cells/tissues.
Many people have chronic infections but if they are in good health there is no problem. For instance, Chicken Pox goes dormant, and only if you are under stress, aging, or worn down, will you get Shingles. Everyone accepts that. It is no surprise then that as you treat your Lyme and Co's you may not get fully better because of lingering (reactivated) EBV (Epstein Barr), HHV (herpes), CMV (Cytomegalovirus), or other viruses.... This is why many of us don't get fully better.
I do believe viruses are treatable but you can not begin to treat them until your Lyme/Co's are under control/gone. There are antivirals (not that great from my experience, but some people do get better with them. There are many herbal/homeopathic soulutions for viruses- Zhang uses Olive Leaf, there are many more (Berberine, Coptis, Clove Oil, Pleomorphics ....) And of course on top of all of this you must detox, (support the liver), heal the gut, and control (autoimmune) inflammations......It is a (solvable) puzzle, but no quick fixes.
So you can see why I was sort of excited when I finally caught a cold (first in 2 years), but unfortunately that unleashed my Mycoplasma, that I am now mopping up. I am however doing better now...nights are always worse -- why is that??
I view Lyme as a disease with layers. Until you treat Babesiosis and Bartonella you cannot begin to really rid the body of Lyme. And, until Lyme and Co's are treated, you can not get at Mycoplasma, and other chronic viruses harboring inside your cells/tissues.
Many people have chronic infections but if they are in good health there is no problem. For instance, Chicken Pox goes dormant, and only if you are under stress, aging, or worn down, will you get Shingles. Everyone accepts that. It is no surprise then that as you treat your Lyme and Co's you may not get fully better because of lingering (reactivated) EBV (Epstein Barr), HHV (herpes), CMV (Cytomegalovirus), or other viruses.... This is why many of us don't get fully better.
I do believe viruses are treatable but you can not begin to treat them until your Lyme/Co's are under control/gone. There are antivirals (not that great from my experience, but some people do get better with them. There are many herbal/homeopathic soulutions for viruses- Zhang uses Olive Leaf, there are many more (Berberine, Coptis, Clove Oil, Pleomorphics ....) And of course on top of all of this you must detox, (support the liver), heal the gut, and control (autoimmune) inflammations......It is a (solvable) puzzle, but no quick fixes.
So you can see why I was sort of excited when I finally caught a cold (first in 2 years), but unfortunately that unleashed my Mycoplasma, that I am now mopping up. I am however doing better now...nights are always worse -- why is that??
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