DNA Connexions + Chicken/Egg Scenario

I agree with 1000Daisies. I can relate to pretty much everything she said.

I saw a Functional MD, who did tests I'd never had before. She was a licensed MD who advertised herself as a functional MD, but she was not certified yet. I was thankful she helped me identify the root causes of my symptoms and chronic inflammation - CIRS from mold exposure and HLA-DR genes susceptible to Lyme and multiple biotoxins. Beyond that she wasn't much help. I quickly lost confidence in her and wish now that I had not wasted so much money on fruitless office visits, but - you know - I was sick, desperate, and clueless.

I also had a positive DNA Connexions test for Lyme and ehrlichia. I had to push for more Lyme testing as this functional MD was all about the mold, even though the idea that mold had caused all of my illness past and present just didn't add up to me.

I stopped seeing her and started reading Buhner and Rawls' books and started Buhner's herbal protocols.

I recently saw a DO who is ILADS trained and also understands mold. However, I don't know how much help she's going to be.

I honestly feel like ANY doctor is a crapshoot at this point. I have expectations that are never met. For example, I spent DAYS filling out questionnaires and typing up my medical history, etc. prior to initial consultations. NEITHER of them had read my history or reviewed the data I'd provided on their annoying portals. The functional MD wasted over half of my 2 hour appointment telling me the superiority of functional medicine and what she could do (which I'd already read on her website before booking the stupid appointment) and making small talk, all of which I paid $650 for. She asked very little questions of me and did not talk about my medical history.

The DO did ask questions, which she would have known the answers to had she reviewed my data and been prepared for the appointment.

I've pretty much completely lost my confidence in the medical profession period. I'be only seen one doctor in the last 20 years who even came close to doing what I think a doctor is supposed to do in the way of taking a thorough oral medical history and performing an adequate physical exam - and he was an ALLERGIST!!! lol

Hi Zrobinso -

You have definitely run the gamut of diagnoses and tx, as many of us have. I went undiagnosed for 16 years... I know how you're feeling - many of us here do. Glad you found us.

I think your instincts are pretty good about this - regardless of if or when you tx Lyme & Co or how (there are many effective modalities other than antibiotics so don't NOT treat because you don't want to use abx), your body will struggle to support the treatment if the immune system isn't functioning and if there are too many competing demands for systems and functions.

SYMPTOMS
One thing that is necessary to understand is - what are your current symptoms? Lyme & Co is primarily a clinical diagnosis. Even with positive tests (which I think you already show a positive for Lyme) - it's important to understand what is going on and often, to rule out other coinfections that are very common with a tick bite. It's possible that you can be infected with the Borrelia burgdorferi (Bb or Lyme) microbe and not have developed Lyme disease and that your sx are due to some other tick infection or something else so it's important to understand what your symptoms are.

DAMAGE
Additionally, sometimes symptoms can be indicative of other problems brought on by the body's response to infections or damage that has occurred that needs to be solved separately from an antimicrobial approach. Often, these issues are missed and can be part of the reason Lyme & Co treatment is ineffective.

METHYLATION
The methylation issues can be quite complicated - most MDs are looking for the two popular mutations and there are hundreds more and they can often combine to alter impact. I also had no support with everything I tried to mitigate methylation issues so I just focused on implementing all the detoxing I could in order to continue moving forward with my treatment. I'm hoping that by the time things calm down for me, the mythylation science will be a little more resolved. Fingers crossed.

One rule of thumb that is helpful is that heterozygous mutations are generally a 30% reduction in the function referenced and a homozygous mutation is roughly a 60% reduction. It is very common to have heterozygous mutations in the general public--definitely common with people like us.

HEALING
Regarding "curing" or "clearing" the Borrelia burgdorferi (Bb or Lyme) microbe - this is kind of a misnomer. It's impossible to know if you've killed ALL the Bb in your body and it's also irrelevant. The intent in treating is to heal the body so that the infection is reduced, the immune system is dominant and your symptoms subside. Obviously, this isn't what happened with the silver. This could be because you have other issues going on - pathogens, viral loads, immune dysfunction... the list of potentials is long.

And one thing only YOU can change is you will absolutely have to allow your body a chance to heal by slowing down. There is no way around this. You can't be that symptomatic, indicating that much dysfunction, AND be trying to put your body through treatment which also has its demands on your body... and try to carry on an active lifestyle. It just isn't gonna work. Been there, tried it a few times - delayed my treatment at least a year because I didn't listen to my body. It's telling you that it can't handle the load. It wants to heal - help it.

RECOMMENDATIONS
So - my strong recommendation is that you first slow down your day - work less, do less, get more sleep, be more inactive, peaceful, and allow what you're already doing a better chance to work. Make sure you're getting good nutrition and that you have no GI/absorption issues or you're wasting time and money.

I'd consider getting adrenals checked with a 24-hr multi-saliva sample test with a urine sample to see how your adrenals are doing throughout the day.

And you might want to increase detox protocol - cover all the bases (skin, GI, liver, lymph, brain) - members here can provide a lot of good input with more detail about your sx.

Confirm you have no GI problems (70% of our immune system is in our GI), high viral loads or anything else that can overwhelm your immune function so that it's more effective at helping you resolve what you're treating and/or if you decide to treat Lyme & Co more aggressively.

And if you still run into walls, it's time to switch up the protocol. But again, that circles us back to understand your symptoms better and what they might indicate. I like sharing this questionnaire with people - helps prioritize focus sometimes:
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

And we can help you figure out a good herbal protocol - some people also add in abx but many incorporate other modalities that can help (bee venom therapy, RIFE, infra-red sauna, and a few others...)

-p

I do think the DNA Connexions test is showing active...what's currently circulating in your blood and/or urine.

I may be wrong, but it's the antibodies test that we can't rely on for active vs. inactive infection...because our immune system can continue to produce antibodies for inactive infections.

I'll give you a much simpler answer ;o) You have active infections and you need to treat. All the other stuff is more than likely symptoms of your root cause which are these bugs running wild in your system and throwing stuff out of balance.

Personally I wouldn't be so afraid of antibiotics they are still the most potent, successful option to getting these bug colonies under control. You can also go herbal, energy medicine or all of them simultaneously of course.

See the LLMD, get your meds and see what happens.

Girlie said...
You said:

"I was IgeneX IND by testing 31kDa+++, 41kDa++++, and 59kDa++++ with positive 31kDa IGM and IGG isotope tests last year. So I got treated by a doctor in Fort Collins with Silver Hydrosol, which he claimed would do the job in 4-6 weeks. After taking 2 months of homeopathic drops, he energetically tested me as having no active infection. I was/am skeptical, but his credentials are overtly impressive, so I went with it. The thing is I am much worse right now (4 months after the therapy) than I was to begin with. "

You tested positive for lyme that was an 8 year old infection - and you treated for a few months and feel worse now.

That was ineffective treatment. You need to continue treatment...no need to question whether you have it or not - that was a positive test to back up your symptoms.

No one is healed in a few months when it's an 8 year old infection.


...and Lyme rarely (if ever) travels alone. Co-infections are a given.

Girlie is right.

I understand doubts about the doctor and his methods. It's time to for a new doctor or start treating yourself with herbs.

You said:

"In regards to DNA Connexions:

Yeah I have an appointment with my LLMD in Denver to discuss the DNA Connexions Friday. I feel like everyone and their mother is testing positive on this test so I'm wary to start aggressive treatments just based on this. I feel like even after treatment you would still see some bugs floating around in your system. Their presence doesn't necessarily mean it is still what is destroying my health. Regardless I'm sure he is going to say they are active and throw me on a protocol."

DNA Connexions is a PCR test. Everything I've read about PCR indicates it is VERY DIFFICULT to get a positive result, because it requires bacteria to be found in your lab sample. (Imagine dropping a fly in a gallon of water and taking out a tablespoon of water to test it to see if there's a fly in it.) A positive result is 100% accurate. You don't get a positive PCR test with DNA Connexions unless the lab finds borrelia bacteria in your urine or whatever sample was sent for testing. A negative result with DNA Connexions only means they did not find any DNA in the sample. It doesn't mean you don't have any bacteria.

I do understand your questioning if the infection is active or not. Many believe the bacteria will never be fully eradicated and that once infected, it will always remain somewhere in the body in some measure. The point here is YOU HAVE SYMPTOMS of active Lyme and probably co-infections. If you ignore it, it will not go away. It will only get worse with time.

It's very clear you have a lot of doubts and questions about all of this. That is going to affect your treatment outlook and your ability to recover. You said you have an appointment with an LLMD. Hopefully, this doctor will be a good communicator who will explain your options and answer questions thoroughly. Remember, YOU are the one in charge of your health. No matter what this doctor tells you, you don't have to accept his/her treatment plan. If you need time to think it over or ask more questions until you understand what the treatment protocol entails, the cost, the timeframe, etc., then tell the doctor that.

Here's an excerpt from an article that might be a good perspective to consider:

"When someone has acute Lyme of long-standing duration, there is a temptation to go right into Lyme treatment mode using antibiotics. However, the patients we are primarily discussing here are not the typical acute presenters; they are those who are chronically ill, have seen several practitioners, received short blasts of inadequate treatment, and are often very depleted.

I find clinical design to be everything in these cases. There is no rush to treat, since often the patient has been sick for years. We need to take the time to set the stage for a reasoned approach. Any practitioner can start Lyme treatment, but once you start, you are soon in “the middle game.” That is a place where you need to keep your bearings, or it is easy to get lost. This translates to frequent visits in which we are constantly tracking our patient’s multitude of clinical symptoms, along with a thorough physical exam, and correlating those symptoms with the patterns currently triggered by the pathogen that is predominating at the time." (excerpted from
www.gordonmedical.com/unravelling-complex-chronic-illness/lyme-neurotoxins-and-hormonal-factors/

That "middle game" is the hardest part. It's good to make an informed decision at the start of treatment of what method or route you want to take or are willing to take - antibiotics, herbs, other alternative means, or some combination. Go in with your eyes open. I imagine there are many people floundering around getting worse as time goes by because they went in without knowing what they were getting into and got scared, confused, or hurt and quit in the middle game. Quitting in the middle game can be costly health-wise. It doesn't mean you can't make changes or take breaks if needed, but it is a long-term commitment if you intend to get well and get your life back.

Yeah I hear you. I guess part of my mentality is this:

I've probably been bit by 500+ ticks in my life given my childhood. Seriously not an exaggeration (granted this was Mississippi and Michigan, not Northeast). I was always outside, camping, playing paintball etc etc. I was likely infected way back as a child, but was asymptomatic because my body kept it in check. Most of my friends probably have it to to some degree, as we were all bitten. I guarantee if I had 10 of my best friends take that DNA connexions test, they could come back with some form of positive result as well. Whats the difference between myself and them?

Well I became symptomatic early on at West Point when I was cutting weight for boxing and lost a lot of weight during basic (45 lbs in 4 months). I was already less that 12% body fat at 6' 180lbs pre-weight loss and dropped to 132 at my lowest, so it wasn't healthy weight I was losing. I'm sure that tanked a lot of my bodily processes and allowed those infections to start taking over. I'm sure my methylation, mitochondrial function, neurotransmitters etc etc were all thrown out of wack as my body lost it's homeostasis, anabolic hormone levels dropped as well as my cortisol went through the roof due to the chronic stress.

Instead of pumping my body full of meds, would adjusting the root factors for Lyme/Co-infections taking over do the trick (i.e. weakened immune system) by improving mitochondria, methylation, neurotransmitters etc etc and allow my body to take on this fight again? To me it almost seems that the infections themselves are symptoms of a dysfunctional immune system. Granted taking the anti-microbials COULD help reduce their burden, I've just heard so many horror stories about people starting on the heavy meds and getting much worse without ever getting better.

zrobinso said...
Yeah I hear you. I guess part of my mentality is this:

I've probably been bit by 500+ ticks in my life given my childhood. Seriously not an exaggeration (granted this was Mississippi and Michigan, not Northeast). I was always outside, camping, playing paintball etc etc. I was likely infected way back as a child, but was asymptomatic because my body kept it in check. Most of my friends probably have it to to some degree, as we were all bitten. I guarantee if I had 10 of my best friends take that DNA connexions test, they could come back with some form of positive result as well. Whats the difference between myself and them?

Well I became symptomatic early on at West Point when I was cutting weight for boxing and lost a lot of weight during basic (45 lbs in 4 months). I was already less that 12% body fat at 6' 180lbs pre-weight loss and dropped to 132 at my lowest, so it wasn't healthy weight I was losing. I'm sure that tanked a lot of my bodily processes and allowed those infections to start taking over. I'm sure my methylation, mitochondrial function, neurotransmitters etc etc were all thrown out of wack as my body lost it's homeostasis, anabolic hormone levels dropped as well as my cortisol went through the roof due to the chronic stress.

Instead of pumping my body full of meds, would adjusting the root factors for Lyme/Co-infections taking over do the trick (i.e. weakened immune system) by improving mitochondria, methylation, neurotransmitters etc etc and allow my body to take on this fight again? To me it almost seems that the infections themselves are symptoms of a dysfunctional immune system. Granted taking the anti-microbials COULD help reduce their burden, I've just heard so many horror stories about people starting on the heavy meds and getting much worse without ever getting better.

You have a pretty good understanding of all this. I don't think anyone can tell you for sure if improving your immune system and body functions will be enough to recover your health without addressing the infections themselves. I suppose it's possible, but you will have a far better chance if you address all of it together.

You asked what's the difference between you and your friends who were bit by ticks - most likely your HLA-DR genotype(s). If you have the genetic type for susceptibility to Lyme or multi susceptible to all biotoxins, your body is not able to clear the infections. If your friends don't have one of those genes, then they may never develop symptoms. It also depends on a combination of other factors like methylation defects, cumulative exposure to environmental toxins, other yet unidentified genetic factors, and any trauma to the body or suppression of the immune system.

You're correct - the chronic Lyme symptoms are the result of a dysfunctional immune system. In my understanding, chronic Lyme is very similar to autoimmune illnesses. You're born with a genetic predisposition. At some point in time, something happens - maybe a series of events happen - creating an environmental trigger that activates that gene expression. There are only two ways I've heard about that have a documented ability to turn off that HLA-DR gene expression. One is the use of VIP spray (see Ritchie Shoemaker, www.survivingmold.com). The other is the use of cat's claw (Uncaria tomentosa). According to Stephen Buhner's book, Healing Lyme 2nd edition, at the top of page 365, he describes the various immune and cytokine changes that cat's claw induced and said "there was a decrease in . . . HLA-DR expression."

Many people with chronic Lyme do not know their HLA-DR genetic type. Many do not use VIP or cat's claw, either, and yet many of them may still recover their health with adequate treatment. I'm sure there are more factors involved in genetic expression and likely there are other things besides VIP and cat's claw that can alter the HLA-DR expression. They just haven't been researched and documented yet.

I also heard many horror stories of people starting heavy meds, herxing horribly, and getting worse or not getting well. That, along with my own bad experience following a very short term trial of antibiotics, was the reason I chose not to do antibiotics. I looked into different options and chose to use Stephen Buhner's herbal protocols to treat myself. Even the herbs are super strong for me. I have to start at very tiny doses and work up very slowly. I feel like herbs were the best choice for me. I don't regret my decision. I'm only 4.5 months into treatment and still have a long road ahead, but I have made progress and the herbs continue to hit multiple infections. I plan to keep treating until I know I'm done.

The functional MD I saw ordered it through Labcorp. My insurance covered it. I don't know what medical code the doctor used on the lab order, though. If insurance doesn't cover it, it's super expensive.