Lyme Disease Support - How to Get Your Life Back
Difficult to diagnose and tough to treat, Lyme disease has reached epidemic proportions. While the CDC reports that over 300,000 cases of Lyme disease are diagnosed each year, this number doesn't reflect just how many people struggle with ongoing and chronic Lyme disease support.
But don't lose hope! Just because the medical community doesn't yet have a good understanding of Lyme disease, you can still get help and manage Lyme symptoms.
The Causes of Lyme disease
Lyme disease is an infection of bacteria in the Borrelia family, typically spread via insect bites. And those insects are primarily ticks.
Though you will often hear this said to the contrary, ticks do not need to be attached for 24 hours in order to transmit Lyme to the host. It's scary, but they can transmit Borrelia and dozens of other co-infections in a much shorter amount of time.
According to Stephen Buhner, Lyme researcher and herbalist, an average tick carries over 200 different diseases at any time.
Fortunately, there are plenty of precautions you can take to prevent ticks from biting you in the first place.
As mentioned above, Lyme is typically spread by ticks, but unfortunately that is not the only way that one can get Lyme. Beyond a tick bite, evidence suggests that Lyme can be sexually transmitted between partners and that the bacteria responsible for Lyme disease can also spread to a baby in utero during pregnancy.
It is also thought that mosquitos might transmit the disease.
Testing for Lyme
Nothing about Lyme is easy. There are many problems associated with this illness, but getting an accurate test for Lyme can feel like the first of many hurdles that those with this illness face.
Due to the slow replication of Borrelia and the fact that it doesn't spend much time circulating in the blood, typical blood tests have proven notoriously unreliable. You might get false negatives and still be dealing with Lyme.
These tests are far from absolute. You might still have Lyme even though a test says that you don't. Following is some more information on common Lyme tests, and then some more helps for where you can get help.
The two most common Lyme tests are blood tests called ELISA and Western Blot.
- The ELISA Test - Measures the Borrelia antibody in the patient’s blood. These antibodies typically hide in your tissues, so the ELISA (being a blood test) detect those. While the ELISA is often covered by insurance, most folks consider it unreliable and it can actually miss roughly half of those who have the disease.
- The Western Blot Test - This test detects different antibodies by measuring various protein bands. The presence of multiple bands allows for a more accurate diagnosis of a microbial infection.This test is more sensitive than ELISA, but is difficult to interpret and not always accurate. It's also very expensive (around $600) and not covered by insurance.
Regardless of whether or not you get a test done, you might want to seek out a Lyme Literate MD if you suspect Lyme disease.
These doctors can often diagnose Lyme based on symptoms alone and have the ability to help you figure out the best way to take control of your symptoms with a chronic Lyme disease treatment that delivers real results.
Acute Lyme vs Chronic Lyme Symptoms
Beyond the typical signs of infection like fever and muscles aches, Lyme disease comes with a long list of symptoms that can drag on for years. Some of these symptoms come on soon after a Lyme infection occurs (Acute Lyme Disease) and others come if the Lyme is not arrested early on and the patient develops an ongoing illness (Chronic Lyme Disease).
Acute Lyme Symptoms
- Bulls-eye rash (this is a common symptom, but note that fewer than 50% of people remember getting a rash)
- Flu symptoms such as fatigue, fever, chills, muscle aches, and headaches
- Neck stiffness
Chronic Lyme disease occurs when you don't successfully treat acute Lyme immediately after the tick bite. This happens either because a doctor misses the signs of infection or because the symptoms failed to appear at first.
Chronic Lyme has many systemic symptoms and can persist for years. Often referred to as The Great Imitator, doctors will often misdiagnose Lyme because it affects so many different body systems.
Don't lose hope though, it's still possible to get your life back.
Chronic Lyme Symptoms
- Joint & muscle pain
- Chronic fatigue
- Muscle twitching
- Chronic flu-like symptoms such as a headache, fever, and neck stiffness
- Bell’s palsy
- Brain fog
- Sensitivity to loud noises
- Problems sleeping
- Blurry vision and floaters in eyes
- Dizziness and tinnitus
- Tremors and tingling in hands and feet
- Chest pain & heart palpitations
- Air hunger (feeling like you are not getting enough air)
Addressing Acute Lyme vs. Chronic Lyme
Acute Lyme Disease can be treated with antibiotics. Following is the reasoning behind how and why to do that.
Although casual and unnecessary use of antibiotics is problematic, they do have a place in our healthcare system and can mean the difference between life and death in the case of a fierce bacterial infection.
However, with Lyme disease, it's not usually as effective as we want to believe.
Borrelia bacteria reproduce at a much slower rate than normal virulent bacteria do. For example, in vitro replication shows an average of every 7 days. This means that the traditional prescription of 7-10 days of doxycycline for a tick bite will not wipe out Borrelia since antibiotics work best when they're taken through several replication cycles.
If you know you've been bitten, you might want to talk to your physician about a 4-6 weeks of doxycycline.
After the first couple of weeks have passed from the tick bite, you have missed your window for antibiotics.
Some practitioners do not recommend antibiotics for long term Lyme disease for several reasons. Borrelia can survive even in the harshest environments. Once the bacteria have entered the bloodstream through the bite, they use their corkscrew shape and burrow into our collagen-rich tissues such as joints, muscles, heart, and brain.
This hiding allows them to be protected from antibiotics and the immune system.
They also have the ability to encase themselves in a cyst when they feel threatened, protecting themselves from antibiotics. Borrelia bacteria then lay dormant, waiting for the antibiotic threat to pass.
In other words, you can treat your initial tick bite with an antibiotic, only to have Lyme disease resurface months or even years later.
Longterm IV Antibiotics for Lyme
Longterm antibiotics are a controversial topic for treating Lyme Disease, and here are the reasons why that is the case.
Some Lyme Literate medical doctors prescribe long-term IV antibiotics for the treatment of chronic Lyme disease because short-term antibiotics are only helpful directly after infection.
However, there are big risks involved with longterm antibiotic use. (source)
For example, folks on longterm antibiotics still need to deal with the destruction of their gut ecosystem, further compromising their immune health. Excessive antibiotic use also contributes to antibiotic resistance.
Some Lyme experts and physicians don’t recommend long-term antibiotics because the risks outweigh the benefits.
Management of long-term Lyme disease syndrome is often focused dealing with symptoms using natural or over the counter pain relievers and inflammatory interventions.
Lyme is terrible. Ticks are almost everywhere, and the disease wreaks havoc on many who get it.
However, even though Lyme disease can feel impossible to deal with, you have hope if you've been infected.
The best thing you can do for yourself is to research as much as you can and take advantage of proven supports that are available to you. It may be difficult to do, but believe me; the more you understand about what's happening to your body, and how to support it, the better advocate you will be for yourself when visiting with doctors.
What kind of Lyme disease support has worked for you?
Stefani is a boy mom and wife on a mission to provide hope for those with autoimmune conditions and Lyme, and encouragement for raising healthy kids. She blogs over at Natural Paleo Family where she loves to cook real food meals, healthy desserts, and embrace the craziness that is life.
Thank you for this informative blog. Really helps a lot.
I have had great success working with my llmd with both antibiotics and herbals. I actually developed POTS (positional orthostatic tachycardia syndrome) from lyme and at one point couldn't stand longer than 2 minutes without getting so lightheaded I'd almost pass out. I've only been treating since Feb and have had tremendous success! Not cured yet, but getting closer to remission everyday.
Great article btw. Thank you!
Hi Brooke! I developed POTS from my Lyme as well. It's certainly very difficult to deal with, but mine is now thankfully mostly under control as well. So glad you've had success with your LLMD!
That's excellent news! Did you ever treat POTS with florinef? I am weaning off of it right now since I am doing so well. How long have you been treating? What are your worst lingering symptoms, and how recovered do you feel you are? Tough question I know. Healing and positivity your way!
I did not treat it with florinef... I'm actually working with a naturopath who specializes in genetics for the last 6 months. He's treating the mast cell activation that I have, which is the underlying cause of my POTS. By treating the MCAS with supplements and homeopathy, the POTS symptoms are going away. The worst lingering symptoms I have are bounding heart, dizziness, and palpitations. Drinking concentrated electrolytes all day long really helps as well! Healing and positivity back at you! <3
I've gone the all-natural route with my Lyme treatment- just diet changes, homeopathics, and herbal supplements. I'm not over it yet but my body has been responding well! In six months I've gone from four types of Borrelia/Bartonella to one. =)
That is so great, Rachel. Have you worked with a practitioner or figured things out yourself? Stories like this give me hope because frankly I'm petrified of Lyme!
I worked with a doctor who had had Lyme himself and we worked to find solutions mostly through muscle testing. I don't think I could have figured it out by myself, or if I had it would have taken a lot longer! And I think it's great to be aware of Lyme but it's not something to fear- just keep supporting your immune system to be able to fight any intruders =)
I appreciate that perspective. I have seen so many devastated by the disease that it's hard not to worry!
I was scared of Lyme as well, thinking I already had enough problems already and didn't see how my body could handle Lyme. I have gone to a practitioner and found out that it's likely that Lyme (and three co-infections) is what I have been dealing with already. Feeling much better after 4 months of treatment. It's more prevalent than most know. Have you seen Under Our Skin and the sequel?
So glad you are feeling better! I will be getting tested as well most likely as I have mold toxicity. I just sent out a newsletter w/ some information about that--if you're interested you could sign up for updates.
I haven't seen it and am a bit scared but I am open. I did just get a book about Lyme that looks really good.
One of the best recommendations I got from my Lyme-literate naturopath was to do daily infrared saunas, and I have seen tremendous results. Unlike a steam sauna, an infrared sauna heats you up from the inside, and basically 'cooks' the bacteria - they cannot survive at the temp your body will reach in even a 30 minute session. It takes time, though - one sitting isn't enough. I do them regularly because they also help with the repair of damage, like the arthritis I have, and lowering my blood pressure and headaches. (Never had high blood pressure until I got this monster.)
I'm so sorry you have had to deal with this. I know how terrible that is. I have heard many say that the saunas are great. Glad you are seeing some progress!
Saunas can be so amazing! They help your body to deal with all kinds of issues. I also ended up with blood pressure problems from my Lyme (POTS), but thankfully it's mostly under control at this point, as I clean up the tail end of the mess this thing made 🙂 Hope you're getting better every day!