Many of the more severe or chronic cases of Lyme disease seem to have a lot of similar physiological abnormalities. I remember having some of the blood work forms in hand, thinking, why the hell is Dr. S testing for that? What a weirdo. I thought to myself, I have Lyme, and that’s that! End of story. Fix me please. But now, I can see why he as well as DC have chosen some of the tests that would not necessarily be on the normal blood test and would have to be sent out to LabCorp, Quest, or whatever company your hospital sends special tests to. Some were normal blood tests but I had no idea why they were important to test for. Well… that is usually not the case. So, not a weirdo… just good doctors who can see the whole picture.
Another term for having several abnormalities, given by one of the world’s most renowned Lyme doctors is called Multiple Chronic Infectious Disease Syndrome, or MCIDS. I prefer to tell people instead of using this fancy term, “I have a laundry list of shit wrong with me”. You say potato, I say potato. Tomatoes, tomatoes. 🙂
So, there are some abnormalities that people should consider when having Lyme disease. These abnormalities are important to look into because they could be hindering your path to getting well:
Bacteria, parasitic, viral, and fungal infections and diseases – These would be tick co-infections, mycoplasma, chlamydia, giardiasis, pinworms, EBV, HHV-6, HHV-8, West Nile, viral encephalopathies among others. For myself personally, I only tested positive for anaplasmosis, but am going on a babesia treatment soon and have and will be on a bartonella treatment yet again. Once again, good doctor = clinical diagnosis. Candida, or yeast is a VERY common issue. Antibiotics cause fungal issues. There are supplements to help aid in getting rid of yeast as well as over the counter products. I know I have fungal issues, due to my tinea versicolor yeast rash. Head and shoulders shampoo as a body wash and foot fungus cream works pissah. I tested positive for mycoplasma and HHV-6 as well. What a great start to my “laundry list of shit wrong with me.”
Immune dysfunction – As most of you already know, Lyme seems to make everything not work the way it should. Without a properly working immune system, it makes it awful hard to kill those little buggers as it slows your bodies ability to fight infection. It is also important do to a CBC panel to check how your blood cells are doing along the way. A lot of dysfunctions or disorders could mean your body is making too much or too little of something. Some immune dysfunctions to look out for include several other autoimmune disorders such as lupus, hemolytic anemia, and thyroid issues. Fortunately, I have had several thyroid tests and a neck ultrasound and even though there was something that was slightly off, I can’t remember for the life of me and I believe I had some anemia issues, but everything in this department seemed ok! Yay!
Inflammation – Inflammation. No shit, right? Think of all the joint pains and everything that hurts in your body. A WBC test is a good way and a simple blood test that can test your levels to see how you are fighting infection or if there is inflammation or infection in your body. When I was taking rocephin and after my surgery and complications from it, my levels were high, but I guess that is to be expected. There are several natural approaches to help fight inflammation. Great diet choices are an easy way to fight inflammation. Here is an illustration that can help you make some good choices 😉
Toxicity – Toxicity is an important issue among many Lymies. People who aren’t sick are able to get rid of the toxins more easily and people with Lyme tend to struggle at eliminating these toxins from their body.
I have heard a LOT of people commonly have mold toxicity with this disease. Mold toxicity can cause several types of infections that can hurt your eyes, skin, lungs, or other organs. If you suspect mold toxicity, you should take a test to see if their body has antibodies for mold exposure or take what is called a RAST test to see if you are allergic to any mold substances. Then, go from there… figure out if there is something in your home that would be causing the issues.
There has also been a lot of people with Lyme that have lead, aluminum, or mercury poisoning. Mercury, is actually the number one leading heavy metal responsible for hindering healing from Lyme. It is an immunosuppressant. I was very surprised at my results when I took a heavy metals test. I told Dr. S. about my hobby of target shooting and Dr. S, who I don’t peg as a gun toting guy whatsoever, said I bet you have lead poisoning.
I was kind of p’oed to be honest with you. It’s not like I lick the bullets or anything. What ev’ ,Dr. S! I was offended, as I thought he kind of thought of me as a crazy, hillbilly bumpkin and was judging me. Well, he was right when I got the tests back….. damnit. I kind of wanted to rub it in his face that he was wrong. But that very rarely ever happens.
Same with mercury. What? It’s not like I ate a thermometer when I was a kid. I have read in a book, “The Top 10 Lyme Disease Treatments” that when Lyme dies off, it releases mercury. I personally think that part of my issues were my past apartment, that I lived at for two years. I actually had to sign a waiver about the paint and windows having things that are no longer legal because they had dangerous chemicals. I didn’t eat the paint chips, but maybe that or the water made the difference. Like I said I lived there for two years. Who knows.. add it to my “list of shit wrong with me.”
Another suggestion to see if there are any other toxicities and prevent them in your home is to get your water tested! A basic water test only shows certain things, like iron, but there could be more toxic things in your water. My friend’s parents opted for the more expensive water test when they bought their home and they had extremely high levels of arsenic. Yikes!
These toxicities are just one more reason why detox is so important. There is also a process, called the chelation process, that you can take to aid in removing the bad toxins. You take some pills, and the heavy metals will attach and you will essentially pee out the bad stuff. It is important to monitor this process, however, as it can also remove GOOD chemicals in your body. Something to discuss with your LLMD.
Food, Environmental, or other Allergies – Most of us Lymies know that gluten and a ton of sugar is a no no, but there are many other types of foods that can affect our system. Some foods, you might not even know you have an allergy to. A lot of doctors offer what is called an Alcat test, which will help determine some of these allergies, that you might have not even known you had! Check out http://www.alcat.com for more information. This test can also determine chemical sensitivities as well.
I have not personally been tested, but have figured out on my own to cut gluten, even before I discovered I had Lyme, as I have more energy without it, have always had issues with sugar and dyes (red in particular), processed foods such as deli meat, and dairy. For awhile, potatoes and corn bothered me when I first started treatment as well… my lymph would swell so bad I had a hard time breathing. Awhile back, I was sneaking some gluten foods, like a breakfast sandwich from dunks and cosmic brownies, and it was amazing how friggin horrible my stomach felt after I ate. Not like I had to poo or anything LOL but really bad cramping. My tummy says NO to gluten!
Environmental and regular allergies will also hinder your ability to get well. Dust mites, pollen, mildew, dust among others. All can be tested for as well. A lot of Lymies keep a filtration system of sorts in their homes. I don’t have the money right now, but I would invest in one to help keep the pet dander and dust at bay.
Nutritional and enzyme deficiences – I could write a ton of these down. Oh my lanta, the list could literally go on forever. Lyme affects EVERYTHING in your body. Common nutritional deficiencies include: zinc, vitamin b, vitamin d, magnesium, manganese, iron, and many more. One VERY common deficiency among Lymies is magnesium, I am not really sure why, but this one is very common. I keep having low magnesium tests, but have finally gotten a normal number. I take magnesium glycinate, but there are other types of magnesium supplements you can take, such as malate, citreate, or taurate. Another thing to talk to your doctor about. Some types of magnesium will make you POOP! Levels me out though, my heart med makes me not go and the magnesium makes me go, so now, my stomach hasn’t been better for MONTHS! 😉 yay for that TMI info 🙂 I was also short on vitamin D, potassium, and l-carnatine. L-carnitine is common if you do not eat red meat anymore. All can be easily treated with supplements, most right over the counter.
Some enzymes that are commonly deficient in Lyme are CoQ10, amylase and lipase, used to check liver and pancreas issues, among others. It is important to figure out if you have high or low enzymes as systematically too high or too levels of some of these can once again cause an array of symptoms. There are many types of enzymes that work together in your body and have been proven beneficial to fight inflammation, improve digestion, pain issues and improve energy levels. A genetic test I would like to mention, is methylenetetrahydrofolate reductas, or MTHFR, or “the mother fucker gene” as I like to call it. This gene in your body provides interactions for this enzyme to process amino acids, glutathione, and vitamins. When this process doesn’t work, it can also make you sick. There are a lot of people with Lyme that seem to have this issue as well. MTHFR causes many issues from birth defects, to tiredness, to mental illness, to cardiovascular disease… lots of issues.
Almost all of these deficiences can be done easily on a regular blood test. A few need to be sent out but once again, important to monitor. Sometimes deficiencies and Lyme symptoms are so similar it really makes a difference to keep track of everything.
Psychiatric Abnormalities – Well, that explains a lot! They don’t call me “Crazy Kimmie” for nothin’! Lyme is closest related to syphilis, which is known for it’s neurological manifestations, and Lyme is closest related, so we shouldn’t have really expected different. Lyme can cause complete personality changes and other cognitive issues. Some of these include: learning disabilities, dementia, mood swings, anxiety, depression, obsessive behavior, sudden rage, and hallucinations. Personally, I feel like my main issue is rage. Talk to your doctor if you have felt any changes in your behavior.
Endocrine Abnormalities – There can be a lot of abnormalities as the endocrine system is a large system in the body. These are your glands that work together to make your body function properly. This is your thyroid, pancreas, pineal, thymus, ovaries, testes, adrenals, and parathyroid. All of these secrete hormones into your body, and all serve a specific purpose. Having too much or too little of these hormones, your body isn’t working the way it should.
It is very common for women to have ovarian cysts with Lyme. I was recommended to take a birth control to stop periods, or lessen them. Since I have Factor 5 Leiden, a blood clotting disorder, I was told to never take anything with estrogen, so regular birth control wasn’t an option for me. I went with depo provera, a shot that is progesterone based that I have to get done every 3 months. Super easy! No keeping track of more pills, I got enough of them already. I haven’t had any new ultrasounds to see if it has helped any but no more periods! Another reason to consider birth control is women tend to herx worse when they are ovulating. No ovulation = less herxing. Makes sense, right?
I would also highly recommend a Cortisol test. Too much or too little can cause too much stress and not allow you to sleep, or make you completely exhausted and sluggish.
Here is a nifty chart that shows symptoms of endocrine issues. I know a lot of symptoms can also be Lyme, but it could be something in your body not working quite right.
Autonomic Nervous System Dysfunction – This system controls your involuntary movements, such as your heart beating, blood pressure, breathing and swallowing, or erectile disfunction in men. Some people with Lyme or co-infections end up with heart issues. I don’t know for sure, but I attribute my supra ventricular tarchycardia to Lyme. Parkinson’s can be common in people with Lyme disease. I actually know of someone from my town that had a very bad, very serious time dealing with Lyme disease and now sees a specialist out of state for Parkinson’s. Once again, Lyme affects everything! If it makes you feel any better, guys with ahem, “issues”, us ladies tend to have a terrible loss of sex drive. At least the birds and the bee’s isn’t the first thing on your mind when you are doing your best to hold it together and just be able to get through the day.
Mitochondrial Dysfunction – This type of disfunction affects your organs, motor function, and the nervous system. Mitochondria is found in every cell in the body, except red blood cells and is responsible for 90% of energy needed by the body to support growth and sustain life. Your entire body can be affected if not working properly. Common symptoms of mitochondrial dysfunction include seizures, loss of motor control, myoclonus, visual and hearing problems, liver and cardiovascular disease, and for kids, developmental delays. I got the fun part, seizures and tics (which DC believes is seizures of my motor/sensory system). I was already legally blind before all of this and have been for years, but my family all is eyeglass wearers. If you notice something different, check with your doctor. Keep up with eye exams. Get a hearing test. Have a neurologist and cardiologist check up.
Stress – Stress doesn’t help anything. Being sick doesn’t help stress. At all. But Lyme seems to like stress an awful lot! Try to take a minute to relax and try some relaxation techniques such as meditation or a basic yoga (nothing too crazy, you don’t want to hurt yourself!). It might help you. I personally find writing to be a great outlet to get out some of the stress that I have built up inside.
Sleep Problems – I think this one is a given. Your body needs rest to get better. Get some rest. Nuff said. Of course, you can probably get a sleep aid of sorts from your Doctor to help you sleep but there are many natural supplements such as melatonin that can help you get to sleep. Other suggestions are valerian, chamomile, and kava.
Gastrointestinal Issues – Probiotics, probiotics, probiotics! A lot of us have IBS or some other tummy issue. I know I sure do! When I was first seeing doctors I had my super fun colonoscopy. It’s not the actual colonoscopy that sucks, as you are asleep and can’t feel anything, it’s the day before when you prepare. At least it was a quick 5 pound weight loss! 😉 Dr. S. also gave me a natural powder, called glutamine, that helps a lot with those stomach issues. It helps protect the lining. This is a tough one because most of us tend to have stomach issues to begin with, then oral antibiotics tear up your stomach even more. I highly recommend using these products. It will help. Not all supplements are created equal, either. A GOOD probiotic belongs in the fridge, not something you can pick up in the aisle of Rite Aid.
So, I think it is safe to say there are a lot of other things that paint a whole picture. For those of you who follow my posts and don’t have Lyme, consider some of these tests to ask your doctor if you aren’t feeling your best, especially the Alcat. Something as simple as a blood test or mouth swab might make you find out you have an allergy you never knew you had and you can go the next step. You might not feel as sluggish or tired! Nutritional deficiencies are also something to look into. Many people have several types based on diet or the way you process chemicals. A simple vitamin regimen might help you and fix the problem. Who knows?! Something to discuss with your practitioner. 🙂
A lot of these dysfunctions can also mimic a lot of the symptoms that Lyme can cause as well. A good LLMD should be testing you for these issues. But if they haven’t, you can always ask! It isn’t like it costs the Doctor anything to order the tests, you or your insurance is paying, so tell your Dr. to check off the damn boxes. You might even be able to teach him or her something new by telling them facts. It is always good to be your own advocate! Either way, you should address these issues in order for your treatment to be as effective as it can be. A big part of treatment and keeping the little bastards at bay is keeping your body happy 🙂 🙂 🙂
(Sources : Beyond Lyme Disease – Connie Strasheim (great book, read it!) , docroberts.com, webmd.com, wkipedia.com, nationaljewishhealth.com, kidshealth.org, lymeinfo.net, http://www.idph.state.il.us/envhealth/factsheets/mold.htm examiner.com, chroniclymedisease.com, mayoclinic, http://articles.mercola.com/sites/articles/archive/2009/08/04/Dr-Klinghardts-Treatment-of-Lyme-Disease.aspx, http://lymenzymes.blogspot.com, http://ghr.nlm.nih.gov/gene/MTHFR, http://www.healthy.net/scr/article.aspx?Id=273, santannaturalmedicine.com