Over a year ago, I started to post about Lymes Disease… I just never got it finished, then I started it again. The information seemed a bit overwhelming, so, once again, I abandoned the project, for indeed, it is a major project. However, I feel compelled to try it once again. Bear with me; especially if you have any aches, pains, fatigue, if you have been diagnosed with ALS, fibromyalgia, arthritis, oh, the list is so great… I could go on forever. Hang in there, it may be the post that saves your life!
Here is what I wrote over a year ago:
The other day I had a conversation with a friend of many years, and, as with people our age, the topic got around to health issues. We had been talking about Gratitude, as with a capital G, one of my favorite subjects and the label on my biggest soapbox, and I stated how grateful I was to finally have my diagnosis for Lyme’s disease. She (I will call her Sally) asked me how I could be grateful for having a diagnosis of Lyme’s! I answered, “well, now I finally know what is wrong and I have a fighting chance to do something about it”. Also, it helps to know for sure that whatever is wrong is going to get better… and it might be not so great again from time to time as the disease cycles, but I no longer get in a panic when I have a “bad” day. There are days when my brain is clouded with fog and I have had to learn to sit it out – tomorrow will be better, and it is. I struggle with the nausea from the bucket loads of pills I am taking – antibiotics 3 times a day for 3 months… pro-biotics 2 hours after taking the antibiotics… special cleansers to get all the bad stuff out of my system… and, my usual thyroid and BP meds, B12 and my baby aspirin. Whoops, I forgot my Glucosamine for my arthritis. I am trying to find the right combinations and to make sure I eat enough food with the pills. I have lost my appetite – not a bad thing – and have to force myself to eat – but am not losing any weight – go figure! (actually, I ultimately lost 28 lbs!)
I have always been grateful for the days when I can walk around and get a few things done, whether in the house or in the yard as I had had days when I could not completely dress myself and had to wait 8 hours for someone to come and help me put my socks on – and by then it was almost time to get ready for bed – I am grateful to be able to do the simple things for myself that we all take so for granted.
I learned to sleep with socks on. I learned never to go anywhere without a phone on me or within a few feet. I have 9 phones in 7 rooms, and a cell phone in the van.
And the hardest one of all – I have learned to ask for help. Not often, true… and I might sit on my butt out in the yard for a half an hour before I lift that 4 ton phone to my ear… No, stubbornness is not a symptom. Or stupidity… though brain fog can be.
I got thru that series and a different series of medicines and the results were amazing. Am I 100% cured? No. Can I go out and play soccer? Not hardly. But I can be on my feet for more than 10 minutes without collapsing in a heap in a chair somewhere… or on the ground. I have been able to get some yard work done. I can breathe better. I can sleep at night without 4 pillows under my head or getting up and sitting in the recliner so I don’t feel like I am being suffocated. Or coughing, coughing, coughing, trying to remove something that was just living in my chest and could not be coughed out.
And from another post I tried to write:
A LITTLE INFORMATION ABOUT LYMES DISEASE… not that I claim to be any kind of an expert – not even close. But, I do have Lymes disease. I have learned that it appears in several forms, of which I have two. I will give you some information from: http://generalmedicine.suite101.com/article.cfm/lyme_disease_and_humans or, of course, you can do your own research.
Lyme Disease and Humans
Borrelia burgdorferi exhibits complex activity when infecting people. If allowed to occur, these changes make it difficult to cure the disease.
Lyme disease is probably the most common vectored disease in the world. Its causative agent is a spirochete: Borrelia burgdorferi. Borrelia normally requires both a tick host of the Ixodes genus and a warm-blooded host to complete its infectious cycle, but insects may occasionally also be vectors, transmitting Borrelia from one host to another.
Inside the Human
If left alone once inside a warm-blooded host, spirochetes move through the blood stream, reproduce slowly, produce blebs, change shape, and move into the host's organs and tissues where they give off toxins that often reduce host mobility. Reduced host mobility increases the probability that new ticks will find and bite the infected host and transfer the spirochetes to more vertebrates.
Spirochetes Release “Cluster Bombs”
Each active bacterium releases into the body thousands of infectious packages, called blebs. Although the bacteria reproduce only about once every two weeks, these blebs are produced almost continuously, are hyper infective and appear to cause most of the symptoms of LD. Blebs are a sort of smoke screen against the immune system. As immune cells and antibodies are attacking the blebs, the bacteria (hidden inside other cells) can continue to release more blebs without injury. Since blebs are not true cells, they may be destroyed without eliminating the actual bacteria.
Borrelia Attacks our Immune System
Our immune response is slowed down and even rendered ineffective by bacteria that can rapidly change their surface characteristics. Borrelia's ability to swiftly generate new combinations of surface proteins while the tick is feeding makes it important to remove I. scapularis ticks early in the feeding bout. But it is even more important to be treated as soon after infection begins as possible. If Borrelia are given time to change their surface proteins and develop other defenses against our immune systems and antibiotics, Borrelia may become able to escape our most concerted efforts to eradicate them.
Spirochetes are Shape Shifters
As if the arsenal of attack by ticks and spirochetes does not perplex the host's immune system enough, the bacteria will change their characteristics when the host marshalls defenses against the spirochetes. They seem to have programs that instruct them to:
Produce new forms of both surface protein groups (vlsE and Osp).
Change shape and discard surface proteins.
Move from the blood stream into body fluids.
Enter cells and become invisible to antibodies and killer T-cells.
Destroy immune system cells.
Hide behind the blood-brain barrier where many antibiotics cannot penetrate.
There are no fewer than three shapes of Borrelia, two of which are highly infective:
the spirochetal form, an L-form that discards its cell wall and integrated surface proteins, and
a cystic form that enters cells and becomes inactive.
The infective shapes of Borrelia disrupt cell function, destroy connections between them, and eventually kill the cells. Being inactive, the cystic form is resistant to antibiotics, does not present antigens to the immune system, and escapes destruction from most medications. The few medications that are active against the cystic forms are dangerous.
Most neurological damage in the body is caused by the L-form of Borrelia. This form easily enters cells, can break into small round cells (cocci), and in the nervous system, disrupts connections (synapses), destroys neurons and their supporting tissues, and produce holes (lesions) in the brain that cannot be repaired. These changes become manifest as:
altered sensory perception, forgetfulness, muscle weakness, slow or rapid heartbeat, low or high blood pressure, personality changes, dementia – sometimes extreme, “Lyme rage,” and many others.
A full blown disease with these characteristics needs a multi-pronged attack to be eliminated.
And then there is the co-infection, babesiosis… This is the one I am currently fighting. From http://health.nytimes.com/health/guides/disease/lyme-disease/babesiosis.html.
The tick that carries Lyme disease and human granulocytic anaplasmosis (HGA) can also carry babesiosis. Babesiosis is caused by a parasite called protozoa. It has been detected in about 10% of Lyme disease patients, and has been reported in Massachusetts, New York, Connecticut, Rhode Island, New Jersey, Minnesota, Wisconsin, Georgia, California, Washington, and now Virginia.
When babesiosis is acquired from ticks, the infection occurs only in the summer. However, unlike in Lyme disease, blood transfusions have also been known to transmit babesiosis, so it can also occur other times of the year. The disease is still very rare, but people in tick-infested areas should be aware of it.
Symptoms of Babesiosis
Symptoms of babesiosis occur 1 - 4 weeks after a tick bite and are similar to those of malaria. Most cases are very mild and nearly unrecognizable. More severe symptoms may resemble those in malaria and include:
Headache, Fever and chills, with night sweats, Nausea and vomiting, Muscle aches, Anemia
Complications of Babesiosis
In healthy people, babesiosis generally causes only mild and temporary problems, but research indicates that the infection might persist in some people and may be spreading faster than previously reported. In rare cases, it can be severe and even life threatening, particularly in elderly people or those with chronic health problems or compromised immune systems. In such cases, the infection can cause altered mental states, anemia and other blood abnormalities, very low blood pressure, respiratory distress, and kidney insufficiency. Co-infection with Lyme disease may also increase its severity. Unfortunately, it is very difficult to diagnose.
Treatment of Babesiosis
Babesiosis is caused by a protozoon parasite, not a bacteria, so antibiotics alone won’t cure the disease. Treatment involves a two-drug combination of an anti-malaria medication and an antibiotic. The standard drug combinations are atovaquone (Mepron) plus azithromycin (Zithromax, Zmax) or clindamycin plus quinine. About 25% of patients cannot tolerate quinine. Adverse effects associated with quinine include hearing loss, tinnitus, stomach upset, diarrhea, and dizziness.
That Mepron is a fun medicine. (NOT) It looks like thick, bright yellow paint. It costs over $1,200 a bottle, usually a month’s worth. Most insurance companies won’t pay for more than the first month. It makes you nauseated to the point that you just don’t want to eat which really helps since the Lyme’s diet is so strict – no sugar, very little caffeine, no gluten products, no pasta (gluten). It is suggested you eat as much organic, non-processed foods as possible. They suggest you eliminate white potatoes, also, and meats that contain all those chemicals, antibiotics and growth hormones. Imagine eating beef that has actually been allowed to graze in a pasture and was not raised in a stall being fed corn products and even processed meat (this is where Mad Cow disease comes from) but was actually allowed to freely walk around in a field and eat what nature intended. Ditto for chickens. What a radical thought! Cage free animals eating what nature intended so they don’t NEED all those medicines. And you don’t need to ingest them second hand.
Most people don’t take Mepron more than 3 months in a row as it tends to do kidney damage (note the blood in the urine) and liver damage (note the lack of appetite and nausea) and so, you pretty much need to quit taking it before it kills you. Of course, it is busy killing those nasty spirochetes, and that is a good thing, so it is important that you have a doctor who is carefully monitoring your progress. It is important to note at this point that there are doctors – general practitioners – who do not believe any of this stuff because it was not known about when they studied to become doctors. They prefer a wrong diagnosis like Lou Gehrig’s disease or fibromyalgia.
Living with Lymes is a test of endurance. As I mentioned before, the disease cycles as the spirochetes morph from one stage to another with a dormant period in-between. They thrive on sugar – hence the strict diet. But certain natural sugars are OK, especially honey, pure maple syrup and Stevia. Artificial sweeteners are just a different form of poison and must also be avoided.
I forgot to mention that one must avoid alcohol and tobacco products. I haven’t used either of those in nearly 30 years so I tend to forget about avoiding them. It just does not occur to me any more than drinking yellow paint would occur to you!
I had planned on teaching for 40 years. That was my magic number. By year 34 or 35, I was struggling to just get into the building from my van and to stay on my feet as much as possible thru the school day. Walking around the room was exhausting, it became hard to give kids the individual attention they wanted. I began to feel like a failure, I could not physically keep up with what I wanted and needed to do. And then the days came when I felt like I just could not think – or at least not as quickly as I used to. Writing pages of lesson plans, thinking of innovative ways to incorporate all the crap we had to incorporate in order to teach English, math and social studies in an art setting some days was just more than my brain could handle. The Lymes people call it brain fog. Year 36, I did not see how I could make it any further. I got Drs notes to keep me from having to do the walking others did. Year 37 was a year of total exhaustion. I prepared myself to hang it up. To tell the truth, I was scared. I thought I was dying – but I did not know of what. And I was, I was dying slowly of Lymes disease.
Retirement was not a lot of fun. I felt like a lazy slug. I’ve never had a lot of tolerance for lazy people and I thought I was becoming one of them. All the house work and yard work I promised myself that I was going to do once I had time just sat and waited, got dustier, weedier, more overgrown… sigh. Dust bunnies held a convention in my living room and multiplied rapidly in my bedroom and spread throughout the house. The effort it took to clean even so much as one kitchen cabinet or one drawer was enough to put me in the recliner for a week after.
So, I redoubled my efforts in my studies. If I could not walk, I could at least keep my brain from rotting away. I doubled my class load and managed to keep my QPA. I was offered a full scholarship to the University of Cairo. I had to turn it down as I knew my body would never stand the strain. If nothing else, graduate student housing was 6 blocks from the building where my classes would be held, and I knew I could not walk it. I even bought a bicycle thinking I could relearn riding a bike and buy a bike over there. Could not ride one. I did not have the strength or the balance any longer. Gave the bike away. Then again, my brain was having trouble separating my Arabic from my Turkish. I was sure I would say the wrong thing and commit some unforgivable international faux pas. Can’t you see the headlines? Granny student expelled from Egypt for telling the president of Egypt to go ____ himself. My dad’s good connections with the Egyptian brass would not be able to get me out of this one, and at 93, he wouldn’t have the energy, either. Oh, languages are so much fun when you screw them up.
Anyway, a friend, who had been diagnosed a few months earlier got on my case, told me she was convinced I had Lymes, and begged me to get tested. The rest is history, part of which is mentioned above.
I remember after the first 3 months of pills, pills, pills (28 a day) – I was able to climb a set of steps into the old train station without anyone holding on to me. OK, so maybe it was slower than I would have liked it to be, but, I did it myself. What a feeling of accomplishment! I was able to do all my grocery shopping in one trip. I still need a powered cart to do Wal-Mart, though. I have learned my limits. Well, most of the time, sorta… pretty much…
And so, as I mentioned up in the beginning, it has also changed my outlook in the gratitude department. I am so grateful for those good days, but, even on a slower day, what a blessing to be able to dress myself, to be able to think (at least enough that everybody seems to want me on their board of directors so I am in meetings all the time), to cut my own grass and pull a few weeds. My stand-uppity garden means I can actually raise a crop of beans and pick them myself – the back thing is not part of Lymes – that was a car accident. I can take care of the cats myself. I have finished a few jobs I had figured I would never get done.
So if you think there might be a possibility that you have Lymes, go find a Lymes specialist who will give you the blood test needed to find babesia and borrelia. And please, please, PLEASE, NEVER use Vaseline, alcohol or liquid soap to get a tick to let go of your skin. Remove it, preferably with tweezers, but pull it straight off quickly. If the tick has Lymes and you suffocate it, it basically regurgitates your blood and the Lymes bacteria back into your system and you are infected.
I know there is an email that has been going around for some time supposedly from a nurse telling you to use liquid soap and the tick will back out. This is how I got my infection, I know it. Our school nurse coated the tick with thick liquid antiseptic soap. A couple of weeks later, I had a huge bull’s eye on my back. DON’T LET THIS HAPPEN TO YOU!
Read all the information on the Lymes sites. It is true, there are still medical people who don’t believe in the research. My GP told me I was wasting my time and money going to a specialist, but she has to admit I am a hundred times better than I was. So look for the Lymes experts.
There are those with Lymes that claim the medicine does not work. My question to them is, did you follow the diet, too? I’ll bet they ignored that part, especially those hooked on alcohol, tobacco or sugar products. If you want to get better, life can not go on as usual, but we Americans, especially, think we can eat and drink anything we want and never have to pay any price health-wise, but that is not so, especially when we have parasites that thrive on sugars, or we impair our own immune systems with tobacco, or more correctly, the chemicals now put in tobacco to keep people addicted.
Get tested. Get well. For most of us, it is not too late.
An excellent reference is The Lyme Disease Solution by Kenneth Singleton, MD, MPH. It costs about $30, but if you have Lymes, it might be the best $30 you ever spent.
There are now Lymes support groups springing up around the country. See if you can find one. Go. If you have a loved one suffering, get them checked. Do your research. Do something. It does not heal itself.
And thanks for wading thru all this.