My thinking
LHCTom, how long do you think you have had lyme disease? Do you feel that you have CFS IN ADDITION to lyme? Have you had the test done on you cerebrospinal fluid (ouch, I had a lumbar puncture done in the 80s and I don't think I could do it again).
When you look into new treatments, what are you trying to address as the priority?
I meet the criteria for CFS/ME but also have strong evidence that I may have Lyme which may either be it's cause or I may be unlucky enough to have both.
First my priority is getting a definitive diagnosis of Lyme since that effects how I try and drive my overall treatment. Why do I and my doctors believe I have Lyme
I have lived on acreage in Northern CA for 23 years where Lyme is prevalent and I have pulled a hundred black legged ticks off either my body, my friends bodies, my bed, my dog and my cat. I have been bitten a number of times and had to have an attached tick removed. So I meet the epidemiology test and exposure test. I do not recall the rash however.
My symptoms, like CFS closely match Lyme symptoms.
My Western Blot came up positive on the highly specific 34 and 39KDa and Flagella 41KDa but failed the CDC criteria which is controversial and driven by one ego driven Gary Wormser
I had a new blood culture done by Advanced Laboratory Services and they cultured the Lyme Bb Spirochete from my blood positive!!
I was given 2 antibiotic treatments about 6 months apart and had severe Jarisch-Herheimer reactions meaning something died off causing a massive immune response in body. Since the 2 antibiotics were different, it couldn't have been a reaction to the drug and both lasted about 3-5 days.
Lyme and CFS/ME are suspected to be pathogenic initiated immune dysfunction which in turn activates opportunistic pathogens like HHV-6, EBV viruses and Mycoplasma and other bacterial infections. The immune dysfunction both helps the initiating pathogen ( Bb in the case of Lyme and a mystery for CFS) survive by down-regulating the innate immune system and killer cell activity and other adaptive immune function including B-Cells and a whole host of other immune mechanisms. This helps the initiating pathogen and opportunistic pathogens survive and tough to treat.
People often relapse after antibiotic or antiviral treatment because the bacteria and viruses hide intracellular, n biofilms, in the immune cells, in the nervous system etc.. If you don't kill them all, they will return.
In addition, Lyme in hides inside Lymphocytes and other immune cells along with HHV-6 and EBV evading contact with antibiotics and antivirals.
Lyme and the viruses also hid in the nervous system also evading antibiotics and antivirals.
Lyme and the viruses use bio-film colonies of mixed pathogens plus genetic exchanges to surround themselves with protective barriers from both the immune system and antibiotics and antivirals. Its tough to break up the protective biofilm colonies and some pathogens stop growing in the biofilm so antibacterials and antibiotics fail.
Both Lyme and the viruses trick the immune system in autoimmune attacks of normal tissue through a variety of mechanisms. This causes most of the symptoms and harm. B Cell alterations may be involved in this autoimmune problems by creating inappropriate antibodies that attack host cells.
They are frighteningly alike in how they work with the main difference being the initiating pathogen.
So what does this mean for treatment to me?
Any treatment that doesn't eliminate the infections either by antibiotic or antiviral mechanisms will not work
Any treatment that doesn't correct MOST of the immune dysfunction will not work.
Any treatment that does not address biofilms will not work.
So what might work?
Testing for ALL pathogens so you know what you are fighting is essential. You must know your enemy. This cannot be over-stressed.
Testing all immune functions possible is essential. To the extent science understands the immune system, the problems MUST be understood.
A biofilm treatment strategy must be found for the pathogens found in your body. There are a number of researchers working on this. Its currently a major problem. Their are are persistence tricks like Lyme changing from its spirochete form to and L-form to a Cyst form that must be tackled. This may also be true of other pathogens.
Once you know what is wrong with your immune system, their are both scientifically rationale approaches like Rituximab, Zadaxin and other immune modulators plus proper nutrition and supplements that can help straighten out the immune system. Their are more radical approaches. I'm looking at all as I have a IgG subclass deficiency in IgG1 and IgG 3, a low CD3 and CD8, low NK activity and low CD57... My immune system is in the tank. I need more testing
I have HHV-6 so high dose Famvir will be my probably approach
The combination of Ceftin and Flagyl addresses both forms of the Lyme bacteria.
I'm stuck so far on biofilm strategies but its my to priority along with other immune system restoring strategies.
Bottom line - You need to fix your immune system and wipe out a very tricky enemy in these pathogens.
WORK IN PROGRESS