About 2 years ago I posted a video on my YouTube channel relaying my entire Lyme disease/Health journey up until that point. I share a short version of my health journey up until getting diagnosed on my About page. The other week I posted an updated Health/Lyme disease journey video on my channel recounting what the two years since that original video has looked like. I had several people ask if I could put that video into a blog post, so here we go!

I'm going to summarize the second half of that first video (because the lead up is on my About page) in a few bullet points and then go more in depth with the last couple of years.

-Diagnosed with chronic Lyme disease plus a host of co-infections Spring 2012

-Started on antibiotics, herbals, and supplements

-Got a picc line placed and started IV antibiotic therapy summer of 2013 for 7 months

-During the end of that 7 months I tested positive for high mold levels and began mold treatment (IV anti-fungals and lots of binders)

-Stopped antibiotics and switched to the herbal Cowden protocol. Also began treating heavy metals

-Summer of 2014 was spent on herbals, learning all about detoxing, and moving from CO to NM

-I essentially stopped treatment in the Fall of 2014 once moving because I felt I had plateaued  and was doing better overall. I began working and things started to flare again, so I found some new doctors in NM.

-One doctor had me do IV ozone and after my first one I ended up in the ER due to peeing blood. We believe the ozone busted a cyst and I ended up being just fine.

-I was working 2 jobs and totally over did it thinking I was "better" and crashed HARD. Major relapse.

-I started seeing a new Lyme doctor in NM who does a lot of alternative therapies. I eventually got a port-a-cath placed and started heavy duty IV's of ozone, silver, vitamin C, some other detox IV's, and attempted antibiotics again (which didn't go well- my body was so done with them!). I honestly tried quite a few treatments while living in NM and there are probably a couple nuanced things that I didn't mention. If not mentioned it's because they didn't work.

-I also started bee venom therapy while in NM which I did for about 2 years (I have a whole video on that here).

-I found an AMAZING chiropractor in NM who was spot on with muscle testing and helped me a lot with my digestive issues, especially SIBO.

-I started working with a nutrigenomics specialist who provided supplements based on my genetics. This helped for the first six-ish  months.

Then I moved to CO to start grad school....

When I moved, I had a seizure and passed out in a coffee shop which resulted in a concussion. This really threw off my body and nervous system. The supplements the nutrigenomic specialist was providing stopped working. I ended up withdrawing from grad school because my health could not handle the intensity of it all.

I started seeing an LLND here in CO who was Klinghardt trained in ART (autonomic response testing, a type of muscle testing). I saw the PA first who provided some herbals and referred me to a cold laser therapy specialist and my current immunologist. I did laser therapy for a few months and noticed no difference, sadly. Lasers have a lot of efficacy and some amazing benefits, but they didn't work for me.

I returned to that Lyme clinic to see the head doctor several months later. I didn't feel like the herbals I was put on were helping, but this follow up visit was a disaster. The doctor and I clashed and I felt like the clinic wasn't a good match and they couldn't' handle my case. I ended up stopping Lyme treatment completely at this point which was the end of 2017.

I started working exclusively with my immunologist and found an amazing primary care. Both diagnosed me with mast cell activation syndrome and dysautnomia. My immunologist began running advanced testing to determine if I was a candidate for IVIG. I've spent the last year and a half focused on getting and starting IVIG, which I finally started in the summer of 2018.

I have still dealt with a lot of GI symptoms. Fatigue and GI are my worst symptoms! I traveled to LA to see a top GI doctor in March 2018. He is very integrative and amazing! He retested mold and Lyme, both of which were negative. He did some other extensive testing and we determined that I'm not actually absorbing nutrients and utilizing them in my cells. I was placed on several supplements for that. I've done several drug trials with him in the last year, as well, to try and aid in my gut healing. We have figured out that I have damage to the nerves that innervate my GI system and that is what needs to be repaired. Although IVIG is meant to repair nerve damage, it hasn't seemed to help my gut at all. My GI feels the next best step is trying stem cell therapy, but there is no guarantee with that and it is very expensive so I haven't made a decision around this yet.

So, the last two years have consisted of a lot of repair and rebuilding after the damage that Lyme and extensive treatment has done. My current treatment consists of:

-Myer's cocktail and glutathione IV followed my IV fluids one week, IVIG the following week (I get this every 3 weeks), one week off of IV's

-In terms of IVIG, I started to feel better over the last 6 months of 2018. But 2019 as been a bit harder and we are still working through what could be causing all my insane fatigue. Part of that includes figuring out my hormones as I do have Hashimoto's and we want to make sure my hormones are in balance

-MCAS and dysautonomia managing medications along with my other medications needed (like thyroid, motility meds, etc)

-Supplements tailored to my specific needs

-My usual detoxing (FIR sauna, epsom salt baths, dry brushing, green juices, etc) as this helps me feel best since I deal with chemical sensitivities

-Lots of rest and just taking care of my body the best I can

-I've also been working a lot on mindset! This has made a difference and I will continue to work on this plus working through trauma and limiting beliefs

A question I get asked often is "what treatment worked best?" and  "should I do X treatment?" and my answer is yes/no/maybe. I literally can't answer that. I'm sure almost every treatment I've tried has helped me in some way and they've each built off each other. I'm not 100% yet and still have a lot of healing to do, but would I be where I am today if I hadn't tried everything I've done or done things in a different order? Who knows! The way I move forward is on gut instinct. I research treatments and then go with my gut reaction on how I feel about a treatment. I'm VERY intuitive and my true gut reactions have never steered me wrong, so I trust my gut instinct with everything I have (even though it's hard sometimes).

I get asked a lot about gut health and gut healing. This is such a complicated topic and I discuss it a lot more in depth on my Instagram, which I encourage you to check out and follow me on if you don't. The short answer is that treating SIBO is what has helped me the most, although gut issues are still a big problem for me. Everybody's gut issues have a different root cause and you have to figure out what the issue is for you (is it Candida or SIBO or celiac or something else) and treat that. Just changing my diet or just adding in a certain supplement has never done much for me, but that may be the thing for you. We are all so different!

I know the above two answers are a bit frustrating because we all just want that magic bullet, but everyone is so bio-individual that the way we got sick and the way we are going to heal is going to be completely different for each person. There is no one size fits all treatment or answer.

This entire health journey has been quite the roller coaster, which, if you deal with chronic illness too, know. I've been through some really rough times (still have them, still more to come, I'm sure) and I've also learned a lot and gotten a lot out of this experience. I wouldn't be the person I am today if I didn't go through what I have. The things that have been most helpful in my journey are connecting with others on social media who can relate and I can speak my truth with, having/creating a really good support system (thanks mom and dad and two of my best friends!), and having faith that this is all for a reason. Sharing my story has been immensely helpful for me. It makes me feel less alone, but I've realized it helps others which in turn helps me because it makes it feel like this isn't all for nothing. Knowing I can support others in their journey or be the voice that I didn't have when I first got sick means a lot.

If you don't know, my friend Derek and I started a podcast called Beyond Your Diagnosis where we share all about living life with chronic illness. We discuss various topics related to chronic illness life and have guests on to share their stories, too. It's been so fun and we've gotten a ton of positive feedback. If you haven't checked it out, please do. You can find us on iTunes, Spotify, Stitcher, and Google Play.

I've been spending a lot more time on YouTube sharing my journey and have mostly just been posting recipes here. I'm happy to try and do more blog posts like this with updates and not just on YouTube if that is better for those of you who still read my blog :). Just let me know in the comments!

This past September (Sept. 2018) I had the chance to attend the LivLyme Foundation Lyme Conference. This was a two day conference consisting of a variety of doctors, researchers, advocates, and more who spoke regarding Lyme disease. It was really quite an amazing experience for me in so many ways, but this post is going to be sharing all the information I learned.

The post is divided up based on speaker. I provide notes on the information they shared plus references and links to articles as necessary. I also provide my own interpretations or conclusions of what they said and attempted to translate all the "scientific speak" into lay person language so it is easier for you to understand.

I took notes on 14 different speakers and have shared a lot of the key points on my Instagram already (all stories are saved to the Lyme Disease highlights on my page). I wanted to comprehensively put ALL the notes together in one spot and felt a blog post would be the best and easiest way to share. So, let's get into it!

Disclaimer: I AM NOT a medical professional. I am NOT providing medical advice in this post. I am simply recounting the information presented at the conference. Please always speak with your healthcare provider to determine the best course of action for you!

A few points emphasized by the doctors or other general points made during discussion periods:

-At this point, there is no known cure for Lyme disease, but remission is possible. Due to the elusiveness of the Borrelia Burgdorferi (Bb) bacteria and challenge to treat biofilms, doctors can't at this point conclude that patients are completely cured of the infection.

-Patients must be careful re: sex. Although all the research isn't there or known, there is evidence to suggest the ability of Lyme to be passed sexually. Your best safety option is using a condom!

-Dr. Horowitz answered the question of having kids if you have had Lyme disease and his answer was also emphasized by other doctors. It is possible to have healthy kids but both parents MUST be in remission before trying, sperm can carry Lyme so it's not only the mother who needs to be treated, and the mother must be on treatment during the pregnancy. [They discussed antibiotic treatment, but I did not write down specifics]

Dr. Eva Sapi: BIOFILMS

Dr. Sapi is a researcher and professor at the University of New Haven. She's recovered from Lyme herself and does a ton of research on Lyme and biofilms now.

As most of you with Lyme disease know, Borrelia Burgdorferi has 3 forms: spirochete, cyst/round body form, and biofilm. The biofilm is what is the most resistant to antibiotics and what allows the bacteria to hide and persist.

Biofilms are not unique to Lyme by any means. They are something produced by many microorganisms as a way to protect themselves and provide "housing" so to speak. A biofilm produced by one organism may end up housing a variety of other microorganisms, as well. Which is how we can end up with so many hard to treat, persistent infections at once. Something key to note about biofilms is that although they can form anywhere, they prefer to settle on collagen. This is why many with Lyme disease are prone to muscle injury, collagen deterioration, and pain.

Dr. Sapi has devoted much of her current research to biofilms and how to eradicate them in Lyme so that we can heal! She, herself, has recovered from Lyme. The research she presented discussed the evidence of chronic Lyme and the ability of the Borrelia Burgdorferi bacteria to persist after the typical 2-4 weeks of antibiotics. This is a great study discussing the presence of Lyme bacteria up to 8 weeks post treatment with a resurgence at 12 MONTHS! You can read more studies demonstrating the persistence of Lyme bacteria here, here, here, here, here, here (Have I linked enough studies yet for the doubters? Because I could keep going...). Lastly, this study demonstrates the presence of biofilms in vivo.

In her lab, Dr. Sapi has studied:

1. The effects of temperature on biofilms, finding that biofilms prefer to live and grow at 37C, which is body temperature (what a surprise!). My interpretation was that this meant that biofilms become less stable/more easy to target when we change our temperature (heat ourselves up or cool ourselves down- whether that be mildly with saunas or ice baths or medically with procedures like hypothermia). You can read the study here.
2. The effects of mutating the Borrelia and how it formed biofilms. It was found that stressing the bacteria (by mutation) still allowed the borrelia to produce biofilms, but some forms were slightly more sensitive to antibiotics. This shows the potential of stress response to aid in the ability to target Bb with treatment. You can read the study here.

Dr. Sapi took time to discuss how although the typical treatment with Doxycycline may eliminate some of the bacteria and some of the forms, there are still other forms that survive and persist. Later I'll discuss the positive results Dr. Zhang and Dr. Horowitz are having with certain antibiotic combinations.

Dr. Sapi has also spent a lot of time studying more natural, herbal treatments for Lyme disease (something she used for her recovery). Stevia has been a big trend in the Lyme community over the last few years for treatment and rightfully so! Stevia combined with antibiotics has shown to help reduce Bb biofilms! This is Dr. Sapi's study.

Although she didn't discuss it at the conference, I spoke with her after regarding the Cowden Protocol. Her studies on various Cowden herbs have shown them to be more effective then traditional antibiotics in eliminating persister forms of Lyme.

Lastly, Dr. Sapi has done some research on bee venom in Lyme disease. Again, this was not discussed at the conference, but here is a great article you can read.

Dr. Ying Zhang: TREATMENT FOR PERSISTENT LYME DISEASE

Dr. Zhang is a professor and researcher at Johns Hopkins University. His area of study is on persistent bacterial infections and developing more effective treatments.

Dr. Zhang started off by discussing the basics on persistent Lyme infection and the current controversies surrounding treating post-treatment Lyme disease syndrome (PTLDS) or chronic Lyme. He used the term PTLDS to be politically correct (so I'll be using it here), but made it clear at the beginning of his talk that PTLDS is synonymous with a chronic Lyme infection. First of all, most patients aren't even aware they were infected until Lyme reaches the persistent form. Second, the infection can alternate between being active and inactive (laying dormant). How? Biofilms!

A CDC survey found that 56% of doctors currently treat Lyme longer than the IDSA recommendations because the current, short treatment cycle of doxycycline does not seem to help patients (a big duh, right?!). So how does a disease become so controversial?

1. Due to the visible vs. invisible, objective vs. subjective issues that come along with an invisible illness. Doctors struggle to treat (and judge patients) based off their looks and the fact that blood work may not reflect symptoms.
2. Studies on treating PTLDS patients with antibiotics have had mixed results. Dr. Zhang discussed 5 studies (see image below). Why are results mixed? Because each patient is uniquely different and the same treatment won't work for everyone. The patients may have needed longer treatment or a different combination of antibiotics then were used in the study. The last study he presented (the one most often referenced by those who argue against long term antibiotic use) was a Dutch study that concluded there is no improvement with antibiotic use, yet the study used no control, invalidating the results.
3. There are a number of theories about the cause of PTLDS, including that it's due to a persister infection, but no matter what, there is currently no FDA-approved treatment for it. This leaves patients (whether they believe in chronic Lyme or not) sick and in pain with no answers.

Dr. Zhang then discussed that there are 2 forms of persister infection:

1. Type I: This is an early development of persister. When the tick bites you, you are immediately infected with biofilm (remember biofilm is what is so hard to treat and makes Lyme persistent).
2. Type II: This is late development of persister. This is when you get a tick bite and are not treated in time, which allows the infection to grow and develop into late stage Lyme.

Here is some of his research discussing the persister method in Bb.

Dr. Zhang's latest research focuses on using Tuberculosis (TB) treatment as a model for treating persistent Lyme. In case you didn't know, TB treatment was originally a 2-4 year mono-treatment due to the persisting aspect of the infection. Patients would become antibiotic resistant, though, so treatment evolved to rotating various drugs and got treatment down to a 24 month treatment. Now, TB treatment is 6 months (2 months of phase 1 to kill active infection, 4 month continuation phase for persisters) with 4 different drugs, one of them being a persister drug (Rifampin). Dr. Zhang emphasized that infectious disease doctors will have no idea what persisters are, only TB doctors!

This TB model is how Dr. Zhang believes we need to approach Lyme treatment- an initial 30 day treatment for active spirochetes and then a longer term, persister regimen. Dr. Zhang has published several studies on daptomycin drug combination therapy for Lyme (treatment methods Dr. Horowitz is using- Horowitz seems to be doing the clinical analysis while Zhang is doing the in-lab research). You can read those studies here and here.

Dr. Zhang has also studied the efficacy of Essential oils in persister Bb treatment, with a lot of positive findings! The top 5 essential oils to use against persisters are oregano, cinnamon bark, clove bud, citronella, and wintergreen. The top 3 essential oils to use against biofilms are oregano, cinnamon bark, and clove bud. You can read the study here. He also has another study that has not yet been published finding that garlic, allspice, myrrh, hedychium, litsea cubeba are more active against persisters than any known persister drug at the moment!

Dr. Kim Lewis: DEVELOPING TREATMENTS

Dr. Lewis is a professor and researcher from Northeastern University. Some of what he presented is currently unpublished research, so I can't share in great detail. I will provide a general overview of the information he presented, though.

Dr. Lewis works in a drug discovery lab, looking into natural options that may be able to be turned into treatments for disease. In the lab, they use mice with a knocked out immune systems (aka they don't respond to Doxycycline), which is comparable to a human with a compromised immune system from Lyme. They have found one compound so far that hits spirochetes and are looking into it's development as a drug therapy for Bb.

The most exciting thing Dr. Lewis presented, though, was his research on the gut microbiome in PTLDS patients. So far, they've found that chronic Lyme patients have a high level of a certain bacteria that is often associated with autoimmune disease and low levels of a different, beneficial bacteria as compared to control groups. What this means is that the makeup of the gut in chronic Lyme patients differs from healthy individuals. The chicken or the egg question was not addressed.

Now that they have identified specific bacterial strains that are altered in PTLDS patients, they can formulate proper replacement therapies. Dr. Lewis and his team are about to run a study in which they do fecal microbiota transplants (FMT) in these PTLDS patients to see how it affects treatment and symptoms. Should be exciting to see the outcomes soon!

Dr. Debbie Hamilton: PEDIATRIC LYME

Dr. Hamilton is a pediatrician who mainly treats children with complex cases, autism, and Lyme disease. Dr. Hamilton's talk was mostly about how Lyme can present in children and since pediatric care is not of my interest I didn't take a ton of notes. I will share a few key things I found of interest, though.

Dr. Hamilton was one of the main doctors to emphasize this next point, but almost all of the doctors brought this up to some degree: whenever she has a patient come in who has been diagnosed with POTS or some form of dysautonomia she immediately tests them for Lyme disease. She has found the two to be almost synonymous. Since Lyme loves the electrical systems of the body, the Autonomic Nervous System (ANS) is often greatly impacted by the infection, thus leading to POTS. She discussed how 50% of POTS patients develop POTS after having an infection! You can read two studies that discuss the connection of POTS post-Lyme infection here and here.

Dr. Hamilton discussed how ENT symptoms are most often Lyme. This study discusses how common ENT symptoms are in patients with Lyme and Bartonella. This study by Peltomaa discusses how "The prevalence of positive levels of antibodies against Borrelia burgdorferi was sixfold higher in patients with sensorineural hearing loss."

Autism was the next topic discussed. 22-80% of children with Autism have tested positive for tick born infections. Dr. Hamilton mentioned that if symptoms of Autism were present since birth, it's possible you are dealing with a congenital case of Lyme disease and need to take a look at the mother's health and medical history. If the child goes through a classic regression phase, trace back to when that regression phase began to see if there was a trigger, like a tick bite. I found all of this quite interesting because it means there is potential to minimize Autistic symptoms or possibly reverse by treating the root cause in certain patients.

Dr. Jayakumar Rajadas: DRUGS FOR TREATING PTLDS/CHRONIC LYME

Dr. Rajadas is a professor at UCSF and the founding director of the Stanford bioADD, a drug research laboratory. To be honest, I didn't take many notes for Dr. Rajadas speech. He mainly discussed various compounds they are researching to use in the killing of persister cells in Lyme disease. What felt most important to me was to hear, again, that there are some amazing doctors and researchers working hard to understand the mechanisms of Bb and the persister forms plus how to potentially treat persisting infection to help patients!

Holly Ahern: INACCURACIES OF LYME TESTING

Holly Ahern is a professor and microbiologist at SUNY Adirondack. She co-founded Lyme Action Network and has created a biorepository in NY to study those with chronic Lyme disease. Unfortunately, I missed Holly's talk. I was able to get notes from a friend, but please be aware these are not my direct notes so I do not have direct study references.

The first thing to discuss is the inaccuracies of the current CDC testing for Lyme disease (Western blot and Elisa). Many on the anti-Lyme side tend to argue that there are too many false positives. Holly has found that there is a false positive 1% of the time while there is a false negative 50% of the time in an acute Lyme infection and 80% of the time in chronic infections. You might want to take a moment to re-read that sentence again. Yeah, okay good, you read that right.

IGG vs. IGM testing is essentially totally bogus with Lyme disease. First, let's review what each of those means. IgM is a marker for current infection while IgG indicates past exposure. Bb is able to manipulate innate (immediate response) and adaptive (antibodies created for future reinfection) immunity (review this study for the science) to disable the IgG response. For those whose IgG (chronic) response has been disabled, they will only test IgM positive when infection is active. Since Bb is a persister, it can essentially always be a current infection. Therefore, a person could have been bit years ago but test IgM positive today. This is why the 2 week course of antibiotics is not going to work. [Victoria note- I've seen a number of people only have IgG positives which, based on everything I learned at the conference put together, I assume also can indicate the persister nature of Lyme. Essentially it caused an initial reaction in your body and allowed you to produce some antibodies, but now is hiding in biofilm so you aren't getting the IgM response. You may still have a very severe and current Lyme infection though!]

Something else of importance to note is that many of us are probably familiar with the HLA mutation for mold. A mutation of HLA-DR basically means that you don't produce antibodies to mold and therefore don't clear the toxins from your system when exposed- allowing a build up in your body that produces a very serious illness. Well, what has also been discovered is that this mutation relates to Lyme disease, as well. AKA You genetically won't produce antibodies to Lyme! No wonder so many don't test positive or don't get better after one round of antibiotics. Dr. Shoemaker discussed two great studies regarding this in this article he wrote about Lyme and CIRS, you can read the studies here and here.

Susan Green:  LEGISLATION

Susan is a lawyer out of Maryland who has done a lot of work on Lyme-related legislation. Her talk wasn't anything too interesting, as it was really geared towards doctors and other lawyers in learning how to navigate the legislative system.

Many patients get involved in legislation, though, as we ask for changes in the treatment of chronic Lyme. In doing so, we need to remember to keep it simple when contacting our legislators, don't be intrusive, and have one consistent message. Letter writing campaigns are a great way to raise awareness with our legislators.

I am working with Susan to create a template letter that Lyme patients can send to their legislators to ask for funding on Lyme disease research. Stay tuned!

Sue Visser: CDC REPORT

Sue Visser works for the vector-borne disease research division of the CDC in Colorado. It was challenging to welcome here to this conference and many people walked out during her talk, but she discussed a few points I'd like to share with you. Sue did stay for the entire conference and spoke with several of the doctors to learn more and understand the controversy around chronic Lyme and how many patients are truly suffering. I know that those of us in the Lyme community have a lot of issues with the CDC and rightfully so, but there do seem to be a couple good people within the organization even if the CDC as a whole is BS at the moment when it comes to Lyme.

Sue shared some statistics the CDC has/is using on tick-borne illness. Firstly, one of the major issues in CDC statistics is that they can only discuss what has been reported to them. Many doctors don't report. Obviously we are aware why many Lyme doctors don't report in the first place, but also many doctors who have CDC positive patients don't report. Some states as a whole have given up on reporting, as well, because the process is complicated with too much paperwork and an overload of sick patients. The CDC estimates that about 1/10 of tick-borne cases are actually reported... so take the CDC's numbers and multiply by 10. There ya go, a more realistic number of Lyme cases (which we as patients are already aware of!).

From 2004-2016, tick borne illness cases have doubled with Lyme accounting for 82% of all tick borne disease. The CDC is aware it is a growing epidemic and stated that the US was not prepared for this growth, tick-borne disease in general, or the amount of illness that it has caused.

Currently only $10.7 million is allocated for Lyme research. If you don't know, this is pennies compared to the money funneled into other disease. [Sue was not able to comment on this, but it was made clear by Holiday and other speakers that the best thing to do is reach out to your representatives who are in charge of budgeting! That is why I'm working on the letter with Susan Green].

I asked Sue this question: "You've been here all day listening to all these doctors and researchers present the science on chronic Lyme, so why is the CDC still so resistant to the diagnosis and helping suffering patients?"

Her answer: "That is the million dollar question. I don't have an exact answer but my best guess is due to poor diagnostic tools."

I'll let all of you take that as you will.

Dr. Richard Horowitz: DATA MINING IN PATIENTS/LATEST RESEARCH

If you don't know who Dr. Horowitz is, you probably don't have Lyme disease! Dr. Horowitz has made a name for himself in the Lyme community by fighting HARD for patients, constantly researching and trying the latest treatments on patients, and has written two books with everything you could ever want to know about treating, what he calls, MSIDS (Multiple Systemic Infectious Disease Syndrome).

His presentation discussed his latest research. His research has been focused on using dapsone combination therapy in the treatment of Lyme disease. His first study was published in 2016 utilizing 100 patients. This new study was based on the MSIDS model of 200 patients.

Dr. Horowitz spent a large chunk of his talk discussing how Lyme causes numerous downstream health affects and the high numbers of co-morbidities or infections (including mold, viruses, dysautonomia, etc) in Lyme patients. I don't want to sit here and provide all the statistics, as I believe they will be in his final study, but I do want to touch on a few.

72% of patients had immune system issues. Most had a positive ANA with no lupus or other discernible illnesses. He found a majority had either low IgG, IgM, or IgA levels with 85% having low IgG subclasses 1 and 3. These subclasses affect phagocytosis, a process to clear out pathogens and dead or defective cells in the body. Dr. Horowitz said that a future question to investigate is whether low IgM with low IgG subclasses 1 and 3 could be a marker for Lyme.

Dr. Horowitz then mentioned that a large chunk of patients did require IVIG therapy to ultimately heal, since they presented with low immunoglobulin levels. He briefly addressed the fact that these patients need IVIG due to an underlying immune deficiency issue. I will address this further in the next speaker's notes.

So how do we treat these patients?

1. First, biofilms need to be addressed and hard! Using Dr. Zhang's protocol findings, like stevia and essential oils, in combination with dapsone is a great option
2. Dr. Horowitz uses a Dapsone combination therapy (Dapsone + 1-2 other antibiotics which will be discussed in the published research study). The importance of dapsone is that it is also anti-inflammatory, penetrates the central nervous system, stops RNA and protein production in the bacteria, and hits all 3 forms of Bb.
3. The goal is to decrease inflammation, increase detox, and repair damage. He uses the 4 R's: Replace hormones, Repair mitochondria, Rebalance the autonomic nervous system, and Reinoculate the GI tract.

A couple notes:

-Dr. Horowitz's dapsone research is on Bb itself. For dapsone combo therapy to be successful, co-infections must be addressed first!

-Dapsone is an incredibly challenging drug to tolerate. He said the best ways to get patients to tolerate it is by utilizing methyline blue, tegamet (I believe this is the drug he mentioned), and increasing glutathione (like MAJOR glutathione use to help detox).

Dr. Isaac Melamed: ALZHIEMER'S OF THE IMMUNE SYSTEM

Dr. Melamed is an immunologist in the Denver area. He is actually my immunologist and I was excited to see he was speaking at the conference. Although not a LLMD, he has seen an increasing number of Lyme patients come through his office over the last 10 years that he can't ignore it anymore. He apparently has spent a lot of time working with Dr. Horowitz now to learn  more about Lyme, advance Lyme-related immune system research, and help patients heal.

He addressed the chicken or the egg question that my family and I are always discussing: is it the Lyme infection that wreaks so much havoc (destroying the immune system) or is it an underlying malfunctioning immune system issue that allows people to get so sick in the first place?

I'm going to address a few things he discussed before getting to his answer to that question. First, he discussed how he believes there is an important genetic component to these types of chronic, mysterious illnesses, but that there are other- environmental- factors that truly allow the disease to progress so intensley.

"Genetics load the gun, epigenetics pull the trigger"

New cancer treatments are aimed at immunotherapy treatments. Aka treatments to modulate the immune system to regulate the cancers rather then going in and killing everything with chemo. Dr. Melamed believes this is the approach that needs to be taken with Lyme treatment.

He's found pretty much all of his Lyme patients deal with neurological manifestations. Interestingly enough, failure of apoptosis (the natural death of cells- aka a way to clean out old cells!) leads to an increase in inflammation contributing to many neurological illnesses (like alzheimer's, autism, and more). But, this is also true of other disease in the body including skin issues.

In his research, Dr. Melamed has found that ADHD is often an inflammatory disease and that by decreasing inflammation in these kids helps tremendously. One way he has done this is by utilizing Zyrtec to decrease allergic reactions.... decrease histamine! Essentially, the allergic triggers induce neuro-immune inflammation. He's finding similar patterns in Autistic children- that it may be the result of an inflammatory reaction or pathway due to immune system dysregulation. Since IVIG can reduce inflammation and modulate the immune system, it may reduce symptoms in Autistic patients.

Dr. Melamed has also found that patients with CVID (common variable immune deficiency) AND low C1 levels all have been positive for Epstein-Barr virus, mycoplasma, Lyme, strep, and parvovirus. Essentially, these patients develop "Alzheimer's of the immune system" where their systems aren't able to recognize or react properly to infection (they forget how!).

1. Since your innate and adaptive immune system talk to each other to react to pathogens appropriately, there becomes a major issue when this communication is interrupted. This is often the case in CVID patients.
2. C1 is important for controlling inflammation and plays a role in autoimmune disease. Those patients with CVID and low C1 end up with brain autoimmunity and neuro-cognitive symptoms as a result of inflammation.

So, I know that felt like a lot and went way off topic, but it was basically the background for Dr. Melamed to answer the chicken or the egg question. He believes the sickest patients who aren't able to recover from serious infections (like Lyme) with standard treatments are suffering from underlying immune system dysfunction (Alzheimer's of the immune system) that can be regulated again utilizing IVIG. Essentially, we can modulate the immune system to respond to infection accordingly with IVIG therapy.

He said many of these types of patients also have Mast Cell Activation Syndrome and EDS (Ehler's-Danlos Syndrome). So what is the link here? Well MCAS is also due to an immune system dysfunction. EDS on the other hand is the genetic component that isn't well understood yet. The big question is what genetics make someone so susceptible to this whole cascade of issues. There is certainly a genetic component because many of these patients aren't getting better despite throwing all the darts at the dart board. This is where we refer back to "manually" modulating the immune system with IVIG.

One of the big questions a lot of people have asked me is if I am afraid of getting re-infected from IVIG. My short answer is no. Both Dr. Melamed and Dr. Horowitz have calmed my fears around this. If you didn't know, the process of collecting IVIG for patient use is very extensive. The plasma sits for 6 months to watch for anything growing in it. It then goes through a 12-step cleaning process and is PCR tested throughout the entire process. Neither Dr. Melamed nor Dr. Horowitz have seen reinfection with patients and find the benefits for healing outweigh the current known con's. Plus, IVIG consists of the immunoglobulins which are what should be fighting the disease in the first place!

Dr. Phillip DeMio: LYME SYMPTOMS

Dr. DeMio is a doctor specializing in Lyme and Autism. He spent his talk reviewing all the different systems (aka every part of your body) that Lyme disease can affect and the accompanying symptoms, especially what he sees regularly. Since many of us with Lyme already know most of this, I am not going to repeat it all here. I do want to highlight a few points, though.

First of all, Dr. DeMio showed a brain MRI of a patient with white spots on their brain who had been diagnosed with MS. He tested and treated this patient for Lyme, re-did the MRI and the spots were gone. This is actually very common in Lyme patients. Oddities on brain MRI's can be an indication of Lyme and it's important to get proper testing and treatment if you are dealing with neurological and cognitive symptoms.

He talked very seriously about pain in Lyme patients. He emphasized that even though pain is an invisible illness for patients and they are turned away from many doctors as "just trying to get the hook up" they truly need proper care and medication. Their pain is real and it can be anywhere!

He sees a lot of patients with false malnutrition AKA patients wasting away despite eating and getting proper nutrient intake (this is because the bacteria are eating up those nutrients and wreaking havoc on hormones). Lyme acts as a false mitochondria. It gets into the cell, taking all the nutrients from your actual cells mitochondria, and using them to fuel themselves. This leads to mitochondrial dysfunction which is why so many patients deal with chronic fatigue.

Lastly, Lyme loves the electrical systems in the body (which I wrote in another speakers notes as this point was emphasized many times). It especially loves to attack the GI tract and co-infections love to sit in the GI lining. This is why so many Lyme patients suffer with a multitude of GI symptoms and issues, including motility issues due to damaged GI nerves (Hi, my names Victoria, have we discussed my GI symptoms enough?!).

Dr. Ricardo Maggi: BARTONELLA

Dr. Maggi is a researcher out of North Carolina State University. He has spent much of his research on Bartonella, specifically developing better diagnostic tools. His talk was about the development and growth of various strains of Bartonella over the years and the challenges that surround testing methods. This was the only talk on a specific co-infection.

First of all, Bartonella divides every 22-24 hours, can survive in any type of cell in the body, and isn't always in the blood. This makes it very challenging. Since 1993, we have gone from knowing about 3 species to discovering 36 species of Bartonella! Over 17 of these species are associated with human disease but only 2 have been used for commercial testing methods. And to make matters more confusing, different strains of each species can be transmitted differently (by tick vs. fleas for example).

Bartonella is considered a relapsing bacterial disease. Since Bartonella divides so slowly and has a 5 day cycle, it can be challenging to get a positive test. You can test on one day and it could be negative but test on another and it could be positive. This adds to the "fun" of nailing down a positive Bartonella test for patients.

Dr. Maggi has reviewed all the various types of testing out there for detecting disease. He's found different tests yield different results. For example, 50% of patients whose blood was drawn and grew Bartonella (aka they could see the patient had Bartonella- it was growing in their blood samples!) tested negative with IFA (indirect immunoflouresence antibody testing). On the other hand, 50% of IFA positive patients were seronegative! Blood testing has yielded 32% accuracy while culture is 80%, so testing for Bartonella is very dependent on the type of test done, when, and sample drawn.

Something else of importance to note is that Bartonella is transmitted by ANY VECTOR (flea, bed bugs, ticks, etc). And if you don't know, Bartonella is also called cat scratch fever. This is one reason why I will never have a pet cat, ha!

Dr. Jyotsna Shah- IGENEX

Dr. Shah is the President and lab director of IgeneX, the leading laboratory in Lyme disease testing. Her talk was VERY technical and I missed part of it so I am not going to share many notes from her. Although, I do want to share a few further points about testing that I haven't addressed already in previous speakers notes.

First of all, when people ask me what test they should do for Lyme, I always suggest Igenex or DNAConnexions. Armin Labs is another popular lab out of Germany that more doctors are using. To be honest, I don't know enough about Armin and I hear mixed things. I've heard they may be better for co-infection testing or for determining current activity of the infection (vs. whether you have it in your body or not).

I believe both Igenex and DNAConnexions are CLIA licensed and Armin is not. I was told Armin doesn't have the same oversight and test validity as Igenex. Also, different types of tests look for active infection vs. antibodies vs. DNA. Please speak with a Lyme literate physician to determine the best testing for you.

Dr. Omar Morales- PLASMAPHERSIS

Dr. Morales is the Founder of the clinic Lyme Disease Mexico in Puerto Vallarta, Mexico. They provide a variety of treatments at their clinic for Lyme disease, their main one being various types of Aphaeresis. They also have become well known for what patients have dubbed the "Lyme Vaccine" which is not what you think.

The goal of aphaeresis is to target several stages of the disease. With aphaeresis, you are able to separate specific cells so you can increase or decrease specifics in the patient based on what they need. It is a very targeted therapy based on the patient with virtually no herx reaction, according to Dr. Morales. It also has the ability to aid in immune modulation, activate naive leukocytes, and remove toxins. Aphaeresis treatments help in a variety of diseases and most that IVIG helps treat since it is immune modulating.

There are several types of aphaeresis:

1. Plasmapheresis: Plasmapheresis is the process of replacing someones plasma with a synthetic version (I believe you can replace with other peoples plasma, but they use a synthetic version at Lyme Mexico). It decreases the density of the blood and plasma by removing toxins. This allows the right cells to do their job with less barriers in the way. Plasmapheresis has shown to decrease inflammation and provide autoimmune symptom relief. Studies show it's benefit in a variety of disease including PANDAS, Lyme Neuroborreliosis, Neuropathy, and infectious and inflammatory disease. 
2. Erythropheresis: This is red blood cell exchange. Red blood cells are pulled out allowing for the removal of blood-borne diseases like parasites. It's been shown to benefit in the treatment of Babesia. Dr. Morales addressed concerns about red blood cell exchange and re-infection stating they have a full pathogen inactivation protocol and also utilize UV light and ozone. 
3. Extracorporeal Photopheresis (ECP): This is the process of running the blood exchange through a UV light exchange while infusing
4. Granulocyte/Monocyt Aphaeresis (GMA): This is the process of selectively removing disease mediators in the blood which allows for the production of new granulocytes and monocytes. Overall this reduces inflammation and increases apoptosis! This procedure has been found to most helpful in PANDAS cases. 

Lyme Mexico is also known for their "Lyme Vaccine" which is essentially the process of using dendritic cells as an autologous vaccine to trigger the correct immune response. Dendritic cells are messengers between the innate and adaptive immune system. As we know, Lyme messes with the innate and adaptive immune system and their abilities to communicate. This vaccine essentially works to correct that communication so the body can respond to the bacteria appropriately. This Lyme vaccine is a big immune modulation technique used by Lyme Mexico.

I hope you found this information as interesting and helpful as I did. Although much of it I already knew from years of dealing with Lyme, it was very calming and reassuring to know that so many doctors and researchers care and that the research is being done! If you have any questions, please comment below and I will answer the best I can.

We all want to get the proper diagnosis right? When we are sick we want to know what is wrong. We want a concrete name so we can better comprehend what is happening. Even if it's just a broken bone- name it! Name it so I can understand it, so I can treat it. Right? Right.

But, there's a dark side to finally getting a diagnosis, too....

...Read the rest of my guest post on Chronic Love Club!

I don't eat bone broth, fermented foods, collagen, or take glutamine or folate/5-MTHF supplements. WHAT?! Many of you may be surprised given that bone broth, fermented foods, and glutamine are very popular in both the gut healing arena and chronic illness world. Folate (or 5-MTHF, methylfolate supplement) has also been hyped up a lot recently as a helpful supplement to combat mutations on the MTHFR gene and it's sister genes.

I've never liked bone broth or fermented foods and both have always bothered my stomach rather then helped it. I kept trying to eat those foods because everyone said I should to heal my gut. I'd force bone broth down and attempt bites at sauerkraut on occasion. I then started added hydrolyzed collagen to my smoothies, baked goods, or tea. It never felt right and it certainly didn't make me feel good.

Then, the other week, I had my genetics properly and thoroughly analyzed by a nutrigenomics specialist and some serious light was shed! I should always know to go with my gut because it has yet to let me down...

Woah woah woah, let's back up a little, shall we? Let me drop some knowledge. This is about to get a bit scientific, but I'm going to try and keep it as simple and straightforward as I can. There are four similar sounding words I need you to keep straight first. They are:

Glutamine

Glutamate

Glutamic acid

Glutathione

Glutamate is essentially the same thing as glutamic acid, for your reference and the purpose of this post, so in this post I'll just be using the word glutamate. Glutamine is a PRE-CURSOR to glutamate. Let's just worry about remembering those two for now, glutamine vs glutamate, okay? And glutathione is an anti-oxidant that helps with detoxification and inflammation. Many of you probably already know what glutathione is.

Glutamate is a neurotransmitter. An excitatory one. It's VERY important for proper brain function and isn't something to hate on... unless in excess. Glutamate is also praised for it's ability to help with healing in the body, including the gut. Glutamate is the pre-cursor to GABA which is an inhibitory neurotransmitter. GABA can then be recycled to glutamate. Essentially, glutamate and GABA balance each other out (one excites, one calms). Imbalances in the body (due to many things, which we will get into in a moment) can cause imbalances in glutamate vs. GABA, leading to high glutamate levels.

High glutamate levels can cause a number of issues from neurological disorders, aversions to certain clothing (fabrics and feels), paranoia, chronic fatigue, and more. Although glutamine helps produce glutathione, increased glutamate can put a demand on glutathione, reducing glutathione levels in the body which in turn increases inflammation. Sounds fun, huh?

Ever heard of glutamate? Probably, it's a supplement, it's found in foods, and it's the component of MSG. MSG= monosodium GLUTAMATE. Many processed foods contain free glutamate. Many health foods contain bound glutamate because it is an essential amino acid. We do need it for our health! Bound glutamate tends to be good because your body is able to digest it slowly and use it properly. We need all 20 amino acids (proteins) in our diet and in meals (meat contains all 20, vegans need to eat rice WITH beans to get them all at once), but consuming just one, and in excess, can cause a lot of issues. Gluten and casein also contain high levels of glutamate, another reason to cut gluten and dairy from your diet.

Well, glutamine is a pre-cursor to glutamate, like we mentioned above. We all know how bad MSG and other processed foods are (is it now making sense why MSG has been linked to neurological disorders?). But, you probably didn't know glutamine supplements and natural, even healthy, foods high in glutamine or glutamate can cause issues. So what foods are high in glutamine? Bone broth, fermented foods, collagen supplements... 3 foods that are all the rage in the paleo and gut healing community! Many doctors also prescribe glutamine supplements on top of all that for gut healing, not surprisingly given what I said above about it's ability to convert to glutamate and accelerate healing. I AM NOT SAYING THESE FOODS ARE BAD! But in excess and for those susceptible to glutamate issues, they are. My genetics make me highly susceptible to glutamate uptake and not recycling it into GABA properly.

Like I said, glutamine rich foods and supplements are popular in the gut healing community, but if you have leaky gut then this allows glutamine to leak into the blood stream, cross the blood-brain barrier, and turn into glutamate... uhh?! You're essentially just dumping this excitatory neurotransmitter into your poor little brain and it soon becomes toxic leading to all the negative consequences I mentioned above. That's a real problem isn't it?

So how does folate fit into this mix? Folate, also known as B-9, can increase glutamate and it also helps convert another amino acid into glutamate. So, you're taking a folate or 5-MTHF supplement to help with your MTHFR mutation, you're downing bone broth and fermented foods to help heal your gut, and maybe you added a glutamine supplement to it all, as well. All of this increases the pool of FREE GLUTAMATE in your body. Ay carumba! Are you feeling like crap yet?

One more thing about folate and glutamate, both stimulate mTOR. mTOR is the process in your body that creates new cells while autophagy is the cleaning up of old, dead or bad cells (including viral cells, bad bacteria, etc). These phases can't be on at the same time. Either mTOR is on or autophagy is on. If mTOR is constantly on, then your body isn't cleaning up any of the bad guys and your left with all those viral, bacterial, and dead cells sitting in your system! Talk about NOT healing...

Are you taking all the steps you think you're supposed to be taking to help heal your gut and body yet still feeling bad or even worse? This could be why. Especially the folate supplementation issue. Many doctors see MTHFR, MTRR or another sister mutation and immediately think METHYLFOLATE SUPPLEMENT NOW! Without looking at or knowing about other genetic issues a person may have that don't allow them to use folate properly. That's my issue, but I'm not going to get into all the genetic mutation issues related to folate in this post. I'm just going to leave things where they are for now and hopefully you'll take my word on it (I mean don't, do your research, but for now know that I have ;)). And don't blame your doctor right away, genetics are very complicated and much of this is just coming to light.

I think this is a very important topic to share about given the popularity of the foods and supplements mentioned in this post and the lengths many of us go to find healing. Healing, especially for those chronically ill with something like Lyme disease, can be EXTREMELY complex. I know I just added another layer to the onion, but your genetics play a paramount role in both your illness and health. They aren't something to be ignored. Yes, we can actually alter gene expression but you need to know what genetic issues your dealing with first to either have your genes express in a positive manner or know how to compensate for the bad ones.

Be sure to talk with your doctor or a trained genetic specialist (I suggest a nutrigenomics specialist who understands all the genes related to gut and detox) to find out what genetic issues you may be having and how to address them. Remember, I am not a doctor. I am simply sharing my experience and knowledge that I gain along my healing journey.

Sources

My knowledge from biochemistry classes in college

My nutrigenomics specialist

http://www.jstor.org/stable/pdf/2882673.pdf?seq=1#page_scan_tab_contents

https://www.ncbi.nlm.nih.gov/pubmed/12481981

Glutamate Excitotoxicity: The Brain, The Nervous System & Nutritional Solutions

Beyond MSG: Could Hidden Sources of Glutamate Be Harming Your Health?

Glutamate – One More Piece in the Chronic Fatigue Syndrome (ME/CFS) Puzzle? The Neuroinflammatory Series Pt. II

http://science.sciencemag.org/content/276/5319/1699

http://digitalcommons.wayne.edu/oa_theses/388/

I get loads of questions asking me about picc lines and port-a-caths so I decided to just make a video talking all about them! I discuss what they're for, the differences, how to prepare and recovery from the placement procedure of each, long term care tips, and just some overall tips & tricks.

I hope this video is helpful for some of you!