Archive | September 2012

Patience

This past month has been tough, mostly in the sense that I haven’t been able to do anything for Jackson.  This past year, I have been researching beyond anything I’ve ever done.  Supplements, treatments, doctors, Lyme Disease, Mitochondrial Disease, Hyperbaric Oxygen, Gluten Free/Casein Free, ABA therapy, school district preschool, Speech Therapy, Occupational Therapy, Osteopathy, Homeopathy, Genetically Modified Organisms (GMOs), the list goes on and on.

With Homeopathy, they key is patience, and waiting for the remedies to do their thing.  We go back to our Homeopath on Tuesday, and I’m thinking he’ll see Jackson’s lack of progress and be changing remedies since we have not seen much progress this last month.  I am not ready to give up  Homeopathy.  I wholeheartedly think our amazing Homeopath is capable of helping Jackson.  For the next 6-8 months, Jackson is in his hands and we’ll see what happens.  I’m not thinking beyond that now since all my positive energy is in Homeopathy now.

My passion is now is getting all the GMOs out of our house.  Whole Foods is my new best friend, and Organic is the name of the game.

For those who still need proof that GMO foods are a danger to our health unlike any other, watch this YouTube video about independent research on GMO’s recently done in France. This should also make us think twice (or more) about eating the meat of any animal fed these foods: http://youtu.be/Njd0RugGjAg
For those of you that have not yet watched Jeffery Smith’s important new documentary “Genetic Roulette” I can’t recommend it strongly enough.

Nagalese and GcMAF

I mentioned in my last post that Jackson’s nagalese level is an extremely high 3.4, with the normal range being 0.3-0.9.  His high number re-confirms the viral theory that our LLMD suggested.  The treatment for his obscenely high nagalese level would be GcMAF injections bought from Europe.  This therapy is a possibility in the future, although for now, we are 100% committed to Homeopathy.  GcMAF injections are definitely in the back of my mind and on my list of things to try in the future should our path journey that way.  Dr. Bradstreet explains about GcMAF and treating Autism:

Better Health Guy, http://www.betterhealthguy.com, documents his journey through GcMAF injections on his website.  His nagalese levels started at 2.9 and lowered to 0.6 through GcMAF injections.

From http://www.betterhealthguy.com:

GcMAF (Gc protein macrophage activation factor) is an immune-regulating compound from Europe that may have benefit for those of us struggling with immune system health.  It has been used in HIV and cancer for several years.  More recently, doctors and researchers have been considering GcMAF for use in patients with illnesses that most of us will recognize.

From gcmaf.eu, “In its role of immune system regulator, research shows GcMAF can reverse other diseases that attack the immune system like Autism, CFS, XMRV, Lyme disease, Aids, HIV, Fibromyalgia (all of which we’ve begun to have success with ourselves), osteoporosis, Hodgkin’s, Lupus, MS, Parkinson’s, various bacterial and viral infections and various types of Immune dysfunction.

I first heard about GcMAF almost a year ago.  At the same time, I had first learned about “nagalase”, a blood test that is used to in part determine whether or not one might be a candidate for GcMAF therapy.  Nagalase is an enzyme that prevents Vitamin D receptors (VDR) from being activated on the surface of the macrophage.  As a result, macrophages are not “activated” and our immune systems are not able to properly respond to invaders.

Here are some points that I have learned thus far on GcMAF:

  • GcMAF has reportedly been tested more for safety, purity, etc. than other human blood products.
  • Macrophages are cultured, destroyed, and the GcMAF receptors are purified.
  • Treatment is via injection 1x/week for 8-20 weeks.  Dose is titrated initially to avoid exacerbation or Herx responses as much as possible.
  • A commonly used dose is .25ml once weekly (a 2.2 ml vial should last 8 injections).
  • The primary test used in looking at whether or not GcMAF may be a reasonable intervention is nagalase.
  • Nagalase inactivates macrophages.
  • I personally would NEVER consider this option without having a baseline nagalase test.  Normal is < 0.95.  Mine was 2.9.
  • The practitioner I worked with suggested that 2.9 was in the range of someone with HIV or cancer in terms of the impact on the immune system.  I’d like to hear from others in the Lyme community as you get test results as well to see if there is a pattern of elevated nagalase in those with Lyme disease.  Whether or not Lyme itself has anything to do with nagalase elevation is something I have not been able to find anything on.  We certainly all have underlying viral co-factors that are likely in play as well, but I suspect that Borrelia may also play a role in nagalase elevation.
  • In healthy college students, a nagalase 0.4 is not uncommon (the lower the better).
  • At 2.9, my practitioner was surprised that I did not have more cognitive deficits such as memory loss and other cognitive issues.
  • It has been suggested that ongoing antimicrobial therapy without a working immune system is like leaving the house with the door wide open inviting burglars in.  By using GcMAF to activate macrophages, nagalase drops, and one may regain a functional immune system.  The door is then closed to further invaders and we may no longer serve as a microbe hotel.
  • Maintenance therapy should not be needed once the immune system is once again properly functioning.
  • Activated macrophages only remain active for 7 days so any negative responses are generally short-lived.  That said, some people do have strong inflammatory responses that are not believed to be typical die-off reactions.
  • It has been indicated that in some cases, other medications may be needed in order to manage the inflammatory response.  This is another reason that one needs to be working closely with a knowledgeable practitioner before considering GcMAF in my opinion.  In the CFS and GcMAF world, this more severe form of a die-off reaction is called IRIS.
  • VDR genetics do not seem to play a role in predicting response as earlier thought according to one practitioner that I have spoken with. That said, Vitamin D levels do correlate with the positive response rate of GcMAF.  Thus, Vitamin D supplementation may be required in order to optimize outcome.
  • Other than die-off reactions or activation of symptoms (inflammation), no other side effects are generally expected.
  • Nagalase should be monitored every 1-2 months while on treatment to determine the required duration of the therapy.  Target nagalase after treatment would be 0.4 to 0.6.
  • Elevated nagalase has a profound detrimental effect on the immune system.  Elevated nagalase is often presumed to be related to microbes of viral origin or cancer.  Viruses that are nagalase producers open the door to chronic infections.
  • Hemagglutinin contains nagalase and is also found in flagella of some bacteria so it could also be the case that some bacteria may produce nagalase.
  • Parents with ASD children also often have elevated nagalase.
  • A practitioner I spoke with likened Lyme disease to a “peat moss fire” burning below the surface.  Activating macrophages should help to deal with the fire.
  • GcMAF should be helpful in dealing with other infections that are not of viral origin; for example, Borrelia, Bartonella, and other infections commonly associated with Tick-Borne Infections (TBIs).  GcMAF is active against many cancers and many different kinds of microbes.
  • Neopterin is another test that is sometimes used as an indicator of immune suppression.  As macrophages become activated, neopterin may rise and later fall.  If one is in the normal range for neopterin and has an immune-related illness, this could be an indication that the immune system is suppressed and not responding appropriately.
  • People with autoimmune conditions can generally use GcMAF.  However, GcMAF may be contraindicated in people with Multiple Sclerosis.
  • Reduction in nagalase is generally seen early in the course of treatment; within the first 3-6 weeks.  In some studies, nagalase dropped by over 50% in less than six weeks.
  • Cancer patients may initially feel as bad on GcMAF as they do on chemotherapy, but often feel much better after the first month.
  • Anti-inflammatories may limited the effect of GcMAF.
  • Enzymes and biofilm-reducing supplements may have a negative impact on GcMAF therapy and may be best avoided.  It is still too early to know what the impact may be, but one practitioner I spoke with feels that it is best to avoid these.
  • One should not be on any immune-suppressing agents while on GcMAF as the immune system must be partially functional in order to respond appropriately to the treatment.
  • A common pattern is to see elevated lymphocytes, high nagalase, and low NK cells.  Once nagalase drops, it may be the case that NK cell function could be positively impacted.  CD57 is a type of NK cell.  It is too early to know if this proves to be true, but it is one of the things I’m quite interested in.
In November 2011, I listened to a presentation by Dr. Kenny de Meirleir on GcMAF.  This video is an absolute must-watch if you are considering GcMAF.  You can find it here.  A few of my takeaways from watching this presentation include:
  • With compromised immune activation, increased nagalase cuts off the conversion to GcMAF – result is a deglycosylated Gc protein that cannot activate macrophages.
  • If you have increased nagalase, you have less GcMAF and your Gc protein is not effectively transferred into GcMAF.
  • Nagalase is part of the gp120 enzyme in HIV.  HERV’s or other viruses active in cells may produce nagalase.
  • Several intestinal bacteria are producers of nagalase.  Editor’s Note: I found this connection to be quite interesting; the gut is big.
  • Similar to HIV, CFS patients have many infections and reactivate endogenous herpes viruses – EBV, CMV, HHV-6, HSV-1, as well as Herpes 7.
  • Healthy controls have very low nagalase enzyme activity.  Normal people do have some, but it should be very low.  There is a clear difference in those with pathology.
  • 395 CFS/ME patients – average nagalase in Kenny de Meirleir study was 1.72 with range of 0.28 to 4.0.  Controls had < 0.69 with range of 0.35 to 0.68.  Only 12/395 had normal nagalase levels resulting in 97% having increased nagalase activity.
  • Dr. Cheney did a small study of 50 patients.  Average nagalase was 3.0 with range of 0.8 to 6.7.  He has a much sicker patient population than de Meirleir.
  • Origin of nagalase in CFS may be: retrovirus?, herpes viruses, intestinal bacteria, HERVs.
  • Find Lipopolysaccharides (LPS) in the blood from gram negative intestinal bacteria (less so from gram positive bacteria).  High LPS suggests increased intestinal permeability or leaky gut syndrome. LPS is one of the most immunogenic substances in the body.  Extremely ill and moderately ill patients have increased circulating LPS and thus leaky gut syndrome.
  • Altered intestinal flora and changes in gut permeability may be a major factor in this entire clinical picture.
  • GVDR-Fok1 and GVDR-Bsm1 polymorphisms in CFS – response to GcMAF is dependent on the VDR gene polymorphism.  VDR is involved in skeletal metabolism, modulation of immune response, and regulation of cell proliferation and differentiation.  Many CFS patients have osteoporosis. Editor’s Note: The VDR connection to GcMAF efficacy seems to be an ongoing topic of debate.
  • In 185 patients looking at VDR genetics, FF/bb is a higher responder.  Ff/Bb is a moderate responder, and Ff/BB is a low responder.  de Meirleir takes VDR genetics into account when giving and dosing GcMAF.
  • Africans are higher responders and Norwegians and Scandanavians are lower responders.
  • GcMAF and LPS activate macrophages.  Majority of CFS patients have increased bacterial transfection from gut to blood. GcMAF stimulates macrophages through a different mechanism than LPS without the negative effects of LPS.  LPS and GcMAF cannot stimulate macrophages simultaneously – it is one or the other.  Affinity of macrophages for GcMAF is higher than for LPS.  GcMAF will induce a “good” phagocytosis without the bad IL-1 and TNF-alpha release.  “Bad” macrophage activation by LPS is diminished by the competitive action of GcMAF in the macrophages.
  • de Meirleir uses 100 nanogram (1/10,000 of an mg) in 1ml serum.  Editor’s Note: This is different than GcMAF.eu potency which is 100ng in .25ml
  • Can be done IV or SC once per week at dose of 25-100ng per week.  The Dose depends on how activated the immune system is and the VDR genetics.  If a patient is a low responder genetically and has low activation of complement in the immune system, the dose might be 100ng per week.  Otherwise, much lower dosages may be used.  Treatment duration is 5-40 weeks with 15 week being the average.
  • Symptoms such as fatigue, sleep quality, pain, neurocognitive function, recovery/less payback, digestive problems, and orthostatic intolerance improved in over 50%.  Of 108 patients, 68 of these had noticeable improvement.  Of these, 44 of the 68 had decrease in fatigue.
  • Risks – GcMAF is natural and normal people produce it.  T-cell activation in patients with a Th1 -> Th2/Th17 shift could in theory develop or increase auto-immunity.  That said, it has not happened once in his cases.  He did have a few people that developed autoimmune thyroid conditions; but that is not uncommon in the normal patient group that he sees.
  • Patients with increased TGF-b1, high IL-6, high ANA, and thyroid antibodies are temporarily excluded.
  • Overstimulation with GcMAF can lead to IRIS – immune reconstitution inflammatory syndrome.  IRIS has been seen in the past in HIV.  In HIV, this is rarely discussed given the severity of the condition they are treating.  IRIS occurs when the immune system is heavily damaged by viruses other co-infections are present.  The immune cells start to regenerate and the immune system produces an exaggerated response to the co-infections.  It is not the GcMAF itself but the result of significant co-infections.  IRIS has been replicated in mice.
  • 20-30% of GcMAF CFS patients experience IRIS.  It is more common in those with co-infections and in those with activated T-cells or a low number of T cells.
  • de Meirleir monitors IRIS with C4a, cytokines, CD25, and HLADR+.
  • Attempts to prevent IRIS with a broad screen for fungal, viral, intracellular bacteria, and parasites.
  • Start with a low dose and titrate up slowly.  In 7 patients that had IRIS, de Meirleir found active Babesia.
Current Status

To learn about my personal experience and response to GcMAF, visit my GcMAF Log page.

Nagalase Testing

Health Diagnostics and Research Institute
5406 Bordertown Ave
Suite 2300
South Amboy, NJ 08879
732-721-1234
Lab@VitDiag.com

Web site: http://www.europeanlaboratory.nl/

The cost of testing is about $65.

Resources

There are numerous resources on GcMAF available.  Rather than try to go into great detail here, as I am still learning about GcMAF myself, I have provided some additional resources below that have significant information on GcMAF.

If you have experience with GcMAF, I’d appreciate hearing from you.  If you have additions or corrections to the information here or additional information that I should share here, please Contact Me.

Note: I am not an expert on GcMAF therapy.  This information is being provided to share my personal experience with this option only.  All medical decisions should be discussed with your doctor.

Anyone out there?

We’re still here, I promise.  I haven’t given up on anything, haven’t lost focus of helping Jackson thrive….I’ve just been busy beyond belief.

Job sharing a first grade classroom, doing double day HBOT dives (we got up to 58!), finding an excellent preschool placement for Jackson, giving Jackson his supplements and remedies, getting all the GFCF food together, and spending quality time with the family seem to take up every waking minute with none to spare.

I can say, with a relieved deep breath, that my heart tells me we are on the right path.  After 3 IEPs, touring and speaking to several preschool possibilities, Jackson will be starting at a county Autism program on Monday.  We visited the classroom last week for the first time, and I went in with great reservations, already making a list in my head of the reason why this program wouldn’t be good for Jackson.  I was proven wrong after observing the teacher, aides and children in the classroom.  First and foremost, the teacher is amazing.  My belief is that a good teacher is 90% of the reason for a successful classroom and student achievement.  During our observation, she was answering all our questions, interacting with her students, and proving to us why she is a good fit for Jackson.  The program is a 5 hour day (8-1:30pm), with speech therapy and occupational therapy included in the day, with a bussing option (which we have declined for the time being).  A concern of mine was, about the staffing to student ratio…1 teacher, 2 aides, 8 students.  The thought ran through my head, do we want a one -on-one aide for Jackson?  When we signed the IEP, we signed it with the condition that we would  meet back in 30-45 school days to discuss successes, challenges, concerns.  I really feel like the teacher who impressed us will advocate for Jackson and honestly tell us if Jackson is able to meet his goals with the adults available in the classroom.  I took Jackson to the classroom on Friday for an hour to meet the teacher, aides and new friends.  He went in smiling and left smiling.  It’ll be a long day for him, and it’ll be a huge transition for him, but I have peace of mind that he is in a safe, loving, nurturing learning environment.  I am excited for his upcoming school adventures.  Jackson has been home-bound for so long, and he is so ready to go out into the classroom and gain experiences to become a successful learner.

Jackson’s behavioral therapy is just one piece of what is going to help him get better.  Internally, Jackson has an extremely toxic, poisoned body.  Lyme, vaccines, heavy metals, nagalese (just got test results he is an extremely elevated 3.4 {normal range .3-.9}), viruses, who knows, the list goes on and on.  Back in August, we met with our DAN/LLMD who had been treating Jackson for the last 7 months and explained to him our desire to pause treatment with him (perhaps temporarily), and give our Homeopath full authority to do what he sees fit for Jackson.  Jackson has been on Homeopathic treatment now for a month, meaning alternating two different remedies and taking 5 daily supplements.  The Homeopath we are seeing has seen over 13oo autistic children and has seen success with the majority.  For those of you new to Homeopathy, as I was just a few short months ago, it requires an open mind and is on the other end of traditional, allopathic medicine.  The book that first educated me about Homeopathy was Amy Lansky’s, ‘The Impossible Cure.’   Life is SOOOOOOOOO much simpler with Homeopathy .  The last 7 months have been stressful beyond belief.  Timing medicines, supplements, being homebound because of special doses, crushing, mixing.  Yes, we are giving Homeopathy 8 months to see what progress can be made, but I truly believe with all my being that we will be seeing little (leading to big) changes in this next year.  I need to be patient.  Involved, but patient.  I’m so used to surfing the web, gathering information about supplements or different treatments, posting to other parents on the Yahoo groups, researching what educational toys we should have in our house that would help Jackson, go, go, go.

The HBOT is being returned Monday, Jackson starts his new school, we start him on two new remedies this week, we’re continuing our bi monthly Osteopath appointments (we’ve now done 5), and we continue to shower him with all the love and inclusion as humanly possible.  Jackson has so much love and support behind him.  He has every reason to want to fully enter our family and engage in this world.  We will truly do anything for Jackson.  Anything.  Things are finally starting to settle down.  I am excited about Jackson’s behavioral and physical support we have in place.  Good things are coming.  I know it.  We’re still here.

This entry was posted on September 8, 2012. 2 Comments