This is a page dedicated to help people understand what it is like to live with Lyme Disease. There are hundreds of thousands of people in the US alone that suffer from this devastating disease, and most of them still have yet to be diagnosed. They suffer from a range of debilitating symptoms, and doctors have no answers for them. They continue to have declining health until they are in a wheelchair, completely bedridden, suffer from sever seizures, and eventually, death.
People who have been treated with antibiotics and other natural supplements by a Lyme Literate doctor have made complete recoveries. However, many live with chronic Lyme Disease. This is not just some 'leftover' symptoms. The disease has penetrated so much of the system, and can 'hide' from antibiotics, even burrowing into the bone marrow, so that it is impossible to kill every last spirochete. It appears I am one of those people. I have been on antibiotics for almost five years. While many of my symptoms have vastly improved or disappeared as long as I am on antibiotics, I live with many debilitating symptoms every day that make life very difficult. I strongly recommend you watch this movie, Under Our Skin. It's free to watch on Hulu. http://www.hulu.com/watch/268761
SYMPTOMS OF LYME DISEASE:
The symptoms of Lyme disease are many and varied, depending on the individual and many factors such as their age and even how they were infected. The symptoms overlap with many other diseases such as Lupus, Chronic Fatigue, Fibromyalgia, Multiple Sclerosis, Rheumatoid Arthritis, ALS, Epstein Barr, Hashimotos, OCD, ADHD, bipolarism, depression and many others. Many people go undiagnosed for years and years, or are commonly mis-diagnosed with one of the above diseases.
Lyme Disease can effect every single organ in your body, but it particularly loves your brain and nervous system. Your brain, of course controls everything: hormones, muscle movement, nervous system, mental health, memory..... every part of your body needs your brain.
Due to the fact that I had it for 14 years before I was diagnosed, I also have Adrenal Exhaustion. That in itself can kill you. Please keep in mind that I was perfectly healthy prior to Lyme Disease. I was also in my late 20's when these started coming on and got much worse into my 30's. Here is a list of my combine symptoms:
Tendonitis (-very painful) muscle spasms, muscle weakness,severe muscle cramps, floaters in my vision ( I had always had perfect vision, and never needed glasses) , tinitis (high pitched ringing of the ears), severe neck pain ( like the worst stiff neck you have ever had, but it never goes away) severe fatigue like all your arms are filled with lead, depression, brain fog, severe short term memory loss, insomnia, panic attacks, night sweats, difficulty swallowing, like your body forgot how to swallow. I have almost choked several times because the flap that is supposed to close over my wind pipe won't function sometimes. Voice goes hoarse/loss of voice, but it's not larengytis. Sudden onset of nausea, my mouth would start to water out of nowhere and I would think I was going to vomit, then it would go away. When I would lay in bed at night, it felt like there was an earthquake or someone was violently shaking the bed. I would sit up and look around, but nothing was moving. That was the Lyme acting on my brain, causing balance issues. This is, I'm sure, where the nausea came in as well. Days where I would just sneeze and sneeze for no reason, all day long. Tremors in my hands, hand-eye coordination is way off, muscle ticks, not being able to remember ordinary words, like 'refridgerator', flu-like symptoms: earache, sore throat, exhaustion, body-wide muscle and joint pain, arthritis in my hands, swelling and pain in hands and feet, hair loss, problems with blood sugar: goes high, then too low and crashes. I don't have diabetes and it doesn't run in my family. This is a direct result of Lyme affecting my organs and brain. Irritable Bowel Syndrome, anxiety, mood swings, depression, severe dizziness to the point that I could not stand up at all many days, I could only lay down. Headaches, feelings of hopelessness, no desire to live or do anything.
I have a mild case of bells palsy. That is where half of your face is paralyzed due to nerve damage. A few years ago, for a period of a few weeks the left side of my face was hurting SO bad. I thought I surely was dying of bone cancer~ that is how bad it hurt. It is undescribable. At the time, I did not know that the major nerve going to the left side of my face was being pinched due to swelling. Bells Palsy is a well known Lyme symptom, but I was not aware of it or even what bells palsy meant. Over a period of time after that, I noticed the left eye was droopy, there was swelling all along that side of my face, my left eyebrow was lower than the right, and I had hearing loss on the left side. When I run my fingers over the left my face, the sensation is somewhat numbed as compared to the right side. It wasn't until a few years later when I read about bells palsy that I realized what had happened to me and how lucky I was that I didn't end up looking like a stroke victim for life. I have permanent nerve damage on that side and my face will never go back to normal. Most people don't notice ( I don't think~ unless they just don't say anything) but it's glaring at me every day in in the mirror as a daily reminder of my disease.
Another really weird symptom that I didn't realize was happening until I saw it on another Lyme sufferer's list is 'phantom smells'. Yup, smelling things that just aren't there. It's weird. Mine was almost always the smell that something was burning, but it was simply impossible for that to be so. And it would be in weird places where that smell would not occur unless it was an electrical fire. The other phantom smell was the smell of something that stunk really bad like garbage. Again, in places where it wasn't possible. Another way Lyme worms itself into your life.
HOW DO YOU GET LYME?
Blood Transfusions~ They don't test for Lyme when they take blood donations. The 'real' Lyme test is very costly and takes time to have done and get results back. There are only 2 labs in the United States that can test for Lyme with a high degree of accuracy: Stoneybrook in New York, and Igenex in CA. The Stoneybrook test is about $350 and the Igenex in the range of $700. There is no way the Red Cross is going to have these tests done. The Western Blot test and all the regular local labs do is totally inaccurate and misses most cases. It missed mine. Thousands upon thousands of people that have Lyme don't know it. Many of the donate blood.
A dog lick~ Yup, according to my Lyme Doctor, Lyme is carried in Saliva and other bodily fluids. It's a bacteria and is easily transmitted.
A Mosquito Bite~ The Lyme bacteria has been found alive and well in female Mosquitoes
Biting Insects~ Also found it biting flies, there is more than one case of someone contracting Lyme through a bite from a biting fly. Studies done in Canada have shown it's transmitted by fleas and head lice.
Sexually Transmitted~Here are the other 'bodily fluids' I spoke of. Studies in Canada show that it is found in semen. I know of 3 women in my town that have it and got it from their husbands. Their children also have it, having gotten it in utero from their infected mothers. Lyme is a 'spirochete' type of bacteria. Siphylus is also a spirochete bacteria and they can react on the human body in very similar ways. We know that back in the 'old days' Siphylus used to make people slowly go crazy and then it killed them. Lyme definitely effects the brain and nervous system, causing all sorts of mental illnesses and then it will eventually kill you.
Lastly: The infamous tick bite~ It does not have to be on for 24 hours and it does not have to create a bullseye rash in order for you to be infected. In fact, you may not experience any symptoms for YEARS after the tick bite. It's very common for Lyme to show up years later during a bout of illness, after a surgery, divorce, or some other mental or physical stress on your body. When your adrenals are tired from working to get you well, they are not able to fight it off any longer and it takes over. In my case, it was like what they say about boiling a frog... something about putting it in cool water first and slowly turning up the heat. Finally, it's being boiled alive before it realizes what's happened. I was at a critically ill stage when I finally realized whatever I had could kill me. From there it took years to find a doctor to diagnose me.
TESTING
If you want to be tested for Lyme, Jo Blow doctor is going to be of little or no use to you. He knows just enough to get you, the patient, into trouble. They usually only treat for a 4-6 weeks, and they do not know all of the other supplements and testing that go along with Lyme Treatment. Lyme treatment includes the whole body: detoxing the liver, probiotics between the antibiotics, immune support via supplements, on and on. However, most people do not even get past the test, because Jo Blow MD has Jo Blow Lab conduct a Western Blot test that comes back negative. That is exactly what happened to me and thousands of others with Lyme.
Think of Lyme in terms of Cancer. It is a highly specialized field that few doctors are qualified to even test for, let alone treat. Most good Lyme Docs ( Called LLMDs by the Lyme community: Lyme Literate MD) are Naturopaths or "NDs." You will need to demand a test from Stoneybrook or Igenex and most likely pay for it out of your own pocket. If your doctor refuses, don't waste another minute with them. Fire them and get a doctor that will listen to you.
TREATMENT:
Treatment is a long, slow journey. Most times it will get worse before it gets better, much like Cancer treatment, you have to go through the fire to make it out the other side. Most Lyme Doctors are Naturopaths and many do not accept insurance, either that or your insurance will not cover NDs. So you will most likely be paying out of pocket for all visits.
The primary way to treat Lyme is antibiotics. I have been on 3 different antibiotics for 3 and a half years now. As long as I am on them, my symptoms continue to improve. Most of my physical symptoms such as tinnitus, the severe dizziness and vertigo, muscle cramping, panick attacks, floaters I my vision etc. has diminished by about 80%-90%. When I go off my abx for a week or so, floaters in my vision come back, my severe neck pain comes back and overall I start to get ill again very quickly.
A vital part of Lyme treatment are the supplements. These are all OTC things like Vit. C, L-Glutamine, Liver Detoxers, Probiotics, Vit D, Liquid Minerals, etc. etc. At one point, I had over $800 a month in OTC supplements I was supposed to be taking. These get very expensive, but the likelihood of full recovery without them is severely diminished. OTC supplements are not covered by insurance.
ADRENAL EXHAUSTION SYMPTOMS:
The adrenal glands are supposed to make 80 mg of hydrocortisone daily. This helps with pain (cortisone), allergies, and is the MOTHER of many other vital hormones. They pump out adrenaline when your body needs to combat stress. They are responsible for your fight and flight instincts in emergencies. When your adrenals don't work, there is no ability to handle even minor stress, allergens, or fight pain and inflammation in your joints. Your adrenals also 'talk' to you thyroid and pituitary. There is a vital relationship between these major and important organs and when the adrenals are not functioning, there is a massive domino affect that causes a multitude of completely dibilitating symptoms.
As I explained to my Dr. one time, If my house was on fire, I would not have the ability to get up out of bed and walk outside. I was mentally, spiritually and physically just a shell. Many days I wished I could just go to sleep and never wake up. I never considered suicide, but I certainly understand those that have. The pain of living becomes unbearable and that seems the only way out. It's like facing a black hole. There is just nothing, but it hurts so much. I feel like this disease has killed who I am in so many ways. Physical pain and symptoms are terrible, but the emotional ones are much worse. You cannot get out of your own head and it effects all of your relationships. The anxiety and emotional turmoil are a constant. I avoid people and public places as much as possible and prefer to just stay at home . Part of that is fear that I will suddenly start feeling really bad. Countless times, I would suddenly become dizzy or nauseous or just simply so exhausted I wanted to lay down in the store and just sleep. How I am feeling can change in a matter of 60 seconds, so I would have to overcome the mental worry of what could possible go wrong while I was out and about. Inability to handle minor, everyday 'stress', such as 'what am I going to make for dinner?' was completely overwhelming. I would just go to bed and pull the covers over my head and cry. A major increase in allergies is also another symptom of adrenal fatigue. Again, that hydrocortisone just isn't there. Air hunger' is another symptom. It's like when you have to take a deep breath or sigh, but after several tries, you still feel starved of air and cannot get a satisfying deep breath. Not a good feeling.
HEALING FROM LYME: WHAT HAS WORKED FOR ME AND MY FAMILY
Detoxing and healing: Infrared Sauna!
This was 'prescribed' by my wonderful Lyme doctor. He handed me a paper with instructions (see instructions below sauana photos) on building a simple, cheap infrared sauna using plywood and/or cardboard, some wiring or extention cords and 'heat lamps' with infrared bulbs. In my case I used insulating foam board with silver reflective coating on one side. Cutting the foamboard leaves little white, static filled foam pieces everywhere, so I just used clear packing tape to seal all the cut edges of the foam board so I don't emerge covered in 'snow' after each sauna :) I plan to 'wallpaper' or somehow decorate the outside so it's not so unsightly.
Get 4 'heat lamp' reflective shades, 4 infrared bulbs (found in most hardware stores, Lowe's etc.), a power strip, extention cord if needed and build it so that it's got a top to keep the heat in.
It's very important that after you sauna, you shower with a charcoal/and or clay soap to really get all the impurities off your skin so they don't just soak back in. You can find several types on Amazon.com. The one my Lyme doc recommended is the Japanese clay and charcoal soap bar: Pelican Deitanseki Soap, but it didn't have the greatest reviews. The last photo is of the exact charcoal soap he sold in his office, but there are several charcoal soaps on Amazon with better reviews. I have been using a black charcoal "African Black Soap" with Shea butter and charcoal from Walmart. It's not in the soap isle, though. I found it below the Burt's Bees display on the isle that has all the acne wash, etc. It's a thick bar of black soap with a clearish wrapper. I have only been using it a couple weeks and am not sure how I like it. It may be making me break out a little more on my back and face....I'm not sure. Charcoal soap can be very drying, so you will want a good moisturizer.
This was 'prescribed' by my wonderful Lyme doctor. He handed me a paper with instructions (see instructions below sauana photos) on building a simple, cheap infrared sauna using plywood and/or cardboard, some wiring or extention cords and 'heat lamps' with infrared bulbs. In my case I used insulating foam board with silver reflective coating on one side. Cutting the foamboard leaves little white, static filled foam pieces everywhere, so I just used clear packing tape to seal all the cut edges of the foam board so I don't emerge covered in 'snow' after each sauna :) I plan to 'wallpaper' or somehow decorate the outside so it's not so unsightly.
Get 4 'heat lamp' reflective shades, 4 infrared bulbs (found in most hardware stores, Lowe's etc.), a power strip, extention cord if needed and build it so that it's got a top to keep the heat in.
It's very important that after you sauna, you shower with a charcoal/and or clay soap to really get all the impurities off your skin so they don't just soak back in. You can find several types on Amazon.com. The one my Lyme doc recommended is the Japanese clay and charcoal soap bar: Pelican Deitanseki Soap, but it didn't have the greatest reviews. The last photo is of the exact charcoal soap he sold in his office, but there are several charcoal soaps on Amazon with better reviews. I have been using a black charcoal "African Black Soap" with Shea butter and charcoal from Walmart. It's not in the soap isle, though. I found it below the Burt's Bees display on the isle that has all the acne wash, etc. It's a thick bar of black soap with a clearish wrapper. I have only been using it a couple weeks and am not sure how I like it. It may be making me break out a little more on my back and face....I'm not sure. Charcoal soap can be very drying, so you will want a good moisturizer.
Below are the instructions for the Infrared Sauna as given to me by my doctor:
Cheap Rife Machine Alternative~ for about $30.
My Lyme doctor said (and I quote)"this works just as good as a $4,000 Rife machine". I photographed the instructions for you to view:
My Lyme doctor said (and I quote)"this works just as good as a $4,000 Rife machine". I photographed the instructions for you to view:
L-GLUTAMINE. I CAN'T OVERSTATE IT'S IMPORTANCE
Jarrow's formula L-Glutamine has been a miracle for us. Bear with my story, so I can explain the reason it's helped both our pain, the cause of which is different for each of us. My son is now 13 and for the past several years has had severe joint pain, especially in his knees and feet. He participated in sports and the pain was debilitating at times. Even when he was not in sports, his knees were literally swollen and red and he was limping around in pain constantly. He is very allergic to gluten and has to be on a gluten -free diet ( due to Lyme). When he eats gluten, he gets inflammation all over, especially in his brain and has major emotional meltdowns, can't sleep, etc.
My LLMD had told us to take L-Glutamine from the start, but didn't say why. We were on so many different things, that I just had to pick and choose what I thought was the most important that I could afford. ( at one point my supplements along would have been over $800 a a month). So we quit taking the L-Glutamine after the first jar was gone. My LLMD had me taking Thorne Research brand and it's over $50 for only 12 oz. ( powder form). I had some left over at the beginning the school year in 2014, so I decided to have him finish the jar. Within 1 week, his chronic pain was totally gone. For weeks, as he took the L-Glutamine, I asked him daily how he was and he kept saying he had NO pain. I started taking it daily and had the same results. Due to the Lyme, I had major, chronic joint pain and arthritis all over every joint in my body for years. It would come and go, and have flare ups, but it was chronic and debilitating. As long as I am on the L-Glutamine, it's reduced by about 90%. Sometimes totally gone.
The root of the problem is of course, Lyme Disease. Then you get someone like my son that has a major intolerance to gluten and he gets a leaky gut. The leaky gut + Lyme = pain and inflammation. For myself, a few months after I started on my antibiotics ( now over 4 years ago) I woke up one day and felt like I had been hit by a train. I had the worst pain of my life all over my entire body. I figured I was 'herxing' ( and boy did I ever~ I got a lot worse before I started to get better). I now believe that the antibiotics had caused leaky gut. The L-Glutamine heals the gut and does a lot of other wonderful things. I now buy the Jarrow's Formula L-Glutamine from Amazon. It's only $35 for 33 oz. and lasts us a really long time. We take between a tsp. and tablespoon in the morning with breakfast by mixing it into our drink. You an put it into anything: yogert, whatever. But my LLMD recommends taking it before meals.
My LLMD had told us to take L-Glutamine from the start, but didn't say why. We were on so many different things, that I just had to pick and choose what I thought was the most important that I could afford. ( at one point my supplements along would have been over $800 a a month). So we quit taking the L-Glutamine after the first jar was gone. My LLMD had me taking Thorne Research brand and it's over $50 for only 12 oz. ( powder form). I had some left over at the beginning the school year in 2014, so I decided to have him finish the jar. Within 1 week, his chronic pain was totally gone. For weeks, as he took the L-Glutamine, I asked him daily how he was and he kept saying he had NO pain. I started taking it daily and had the same results. Due to the Lyme, I had major, chronic joint pain and arthritis all over every joint in my body for years. It would come and go, and have flare ups, but it was chronic and debilitating. As long as I am on the L-Glutamine, it's reduced by about 90%. Sometimes totally gone.
The root of the problem is of course, Lyme Disease. Then you get someone like my son that has a major intolerance to gluten and he gets a leaky gut. The leaky gut + Lyme = pain and inflammation. For myself, a few months after I started on my antibiotics ( now over 4 years ago) I woke up one day and felt like I had been hit by a train. I had the worst pain of my life all over my entire body. I figured I was 'herxing' ( and boy did I ever~ I got a lot worse before I started to get better). I now believe that the antibiotics had caused leaky gut. The L-Glutamine heals the gut and does a lot of other wonderful things. I now buy the Jarrow's Formula L-Glutamine from Amazon. It's only $35 for 33 oz. and lasts us a really long time. We take between a tsp. and tablespoon in the morning with breakfast by mixing it into our drink. You an put it into anything: yogert, whatever. But my LLMD recommends taking it before meals.