When I was diagnosed with Lyme Disease I was having a discomfort on the left side of my stomach, right under my ribs. We put it off for so long, and there would be times it would get really bad too! Finally within the last few months we started looking into the gallbladder, which can cause pain and discomfort, and worsens after eating. The gall bladder creates another one of those chemicals to help digest food I guess, and the bile it creates is important, the only issue is it can have different issues like gall stones, and pain, and need to be removed. Not everyone needs their gall bladder removed, but we started considering IV Rocephin as my next treatment regimen and we wanted to make sure that we checked the gall bladder in full for any signs of problems before continuing down that path. We first did an ultrasound that checked the structure of all the organs and major things in the gut, including the Aorta Artery from the Heart, the whole digestive track, the Spleen, Kidneys, Ovaries, Gall Bladder, Pancreas, Liver, and so on. It came back clear, and we decided to do the next step which would check the function, instead of just the structure, of the Gall Bladder. This also after 5 weeks came back normal, and nothing was found. Then within two weeks I started going downhill. I had not even the slightest desire left in me to eat, I had no appetite, i was forcing a few bites a day if any food, and wasting lots of food, I just couldn't manage to eat even a bowl of soup! It would hurt if I did force down a lot, and I was extremely tired, and weak, and could not even horseback ride which is my passion! After 2 weeks and about 20 lb.s were lost, we started thinking Pancreatitis. The Pancreas creates enzymes to digest food and if its having problems can instead digest itself causing pain, lack of appetite, and fatigue, along with Diarrhea and dehydration. This could be serious, and the average treatment for something like that was multiple days in the hospital with IV nutrition to let your Pancreas rest. Then a few days after seeing the Doctor, and while we were waiting for the blood test for Pancreatitis to come back, i started having bad stomach pain, noticeably worsened when i ate, to the point where I would hunch over forward to help relieve it. I was nauseous, and not hungry, and tired, and in pain. I fought through but by Thursday evening was so bad I could barely breath, so I went to the ER. They did blood tests, urine tests, and a CAT scan (where you drink the contrast for 2 hours, and then get an IV and take the photos over the last hour), they even put in IV hydration for me and administered Morphine and nausea medicine. All the tests were negative for anything, and we had no clue what to do... I went home and rested, and then Friday my mom got in contact with the GI specialist to get her opinion. The GI doctor wanted me to start a medicine called Karafait that night, and take it 4 times a day over the weekend, and see if it helped any. other than that I was suppose to rest. Well i had a fever Friday evening, but still took the Karafait, and suffered through the night. Then by morning I felt a little better, still tired. By Sunday I was feeling wonderful! No pain, Nausea, nothing! it was virtually all gone! I was hungry, and thirsty and could eat without it bothering me! Like a miracle it was all better! the GI doctor explained Monday that the Karafait was probably coating a Gastric Ulcer and that's why it didn't hurt anymore. it would coat it and give me time to heal. This must be whats wrong. I have taken loads of tests we are still waiting back for, and I know I am going to be healing until the end of January at least, but I'm so glad we found what it was after two whole weeks of pain! This has been just another bump in the road in my treatment, and I will take it with ease and as Dory from Finding Nemo warns : 'Just keep swimming!'
Hey everyone, just wondering if anyone has noticed this. First of all, we have all been in a wheelchair or done something to call attention to ourselves as sick along this journey. Has anyone noticed that you don't get stared at when you are in a wheelchair? The stereotype is to believe that everyone is looking at you and thinking your weird, oh no! The truth is, when someone see's a young girl/guy in a wheelchair, or anything close, the tend to look away, look down, walk the other direction, or even dash out of your way. Not because they think you're weird, but because they care for the sick. Anyone who did not care would giggle, or laugh, or whisper about you. Int he many experiences I've had in public with either a mask on, or a wheelchair under me, no one has ever once asked me what was wrong, or criticized me! The Ugly Truth is you do what you got to do! Believe me, riding in a wheelchair may be ugly but the truth of the matter is, we are all in it together, you are NOT alone! :-D
The final test results and biopsy results came back from my endoscopy. They had said everything was fine, but know I am up against the toughest dieting challenge I think I've ever faced. After trying to reach us for days we finally have learned that the results showed I am lactaid deficient, which is very similar and parralell to lactose intollerent. I now am Lactose free with my diet and trying to fibns things like rice milk, soy cheese, and an alternative to pizza! I didn't realize even bread sometimes had milk in it, this is a big deal but is another challenge for me to beat down.
We believe from some of what we've heard that possibly this is due to the chronic antibiotics I have been on the past year. This would all make sense. If it's not that it could be caused by the Lyme or the co-infections, even possibly something that just simply developed! Hopefully it will get better soon when I see my gastro MD and she prescribes a pill with the digestive enzyme in it that i will take with any dairy food! I am going to see a nutritionist too, hope all goes well there! For now this is my latest update and as i am coming to accept it is another road block that I have to climb over in my path to recovery!
Babesia, one of the many co infections of Lyme, is not easy to treat and can cause many symptoms that can disable someone to regular every day activities. This strand of bacteria alone has hundreds of different strands within itself, and is something that my family was not comfortably able to afford testing for. Through Igenex labs in Ca., the one trustworthy Lyme Literate lab in the U.S. that tests for all its infections CORRECTLY, It will cost somewhere up to or around $600 for the extended co infections testing. Just for Babesia, or Bartonella testing, it is somewhere over $100 a piece! This is pricey, as the co infection tests are far more extensive and tough to execute than Lyme Disease. In fact, it is tough to even get one of these tests done through a local lab, and it is almost a waste of time in my mind as it won't be accurate enough to barely tell you anything. However, every person has different body types and the bacteria may show up more for one than another...... it is all dependent on the way god wants it to work out.
So if testing and diagnosis is so difficult, then you can imagine that treatment is tough too. Most of my symptoms (headaches, sleep apnea, concentration, dizziness, fatigue, stretch mark-like rash) all point to Babesia and/or Bartonella. We have tried treatment towards Bartonella and got no effect, so now we have pulled out the big weapons and are going to pack a huge punch to Babesia! Since 6-17-09 when I saw the LLMD, he prescribed Zithromax (a powerful antibiotic usually prescribed in a five day dose to last up to 14 days) so that it could treat Babesia and/or Lyme, mostly Babesia. There are some treatment regimens that claim treatment of co infections before the Lyme is more effective. For me only time will tell. The Zithromax is an every day 500 Mg. dose for me, to be taken by itself without herbs/supplements/vitamins. This is tough to accomplish when you take near 62 pills a day. The effect of the Zithromax was that I had a herx reaction (finally after trying medicines for 9 months with NO effect but steady worsening. Con was that It was July 4 weekend to start with, keeping me out of some exciting events, and that we had roped ourself into puppy sitting that weekend, and I was suppose to help a LOT.). Then I realized a very slight reduction to headache pain. It was just enough to take the edge off of the constant pain I felt, and enough to encourage me to get to work with my summer project of completing redecorating my room.
7-22-09~ the LLMD appointment went good. It has been decided that I am starting Mepron to go with the Artemesia, and Zithromax for a full blown Babesia treatment! The issue is in the Mepron. It is only an oral medicine, that comes only in liquid form, and only in Citrus flavor which I don't even like! This medicine is the thickest, and most NASTY medicine I have ever had to take. It is bright yellow, like a school bus, and literally the texture of paint, Elmer's glue, or nail polish. It feels like Concrete running through your system, and I can feel it moving through my entire GI track, which isn't very appetizing. Having to take a teaspoon of Mepron twice a day right after a meal is kind of similar to having to drink Barium before an Upper GI Test. It has a bad flavor, worse texture, and worse effect of toxicity of my body! I thought nothing could be worse than the Bicillin Injections I tried.
I hope though that this Mepron will move through all my body systems and effectively sweep the Babesia infection out of me, making me feel well enough to move on with my life dreams and aspirations.
One thing that ropes in with Lyme is multiple types and dimensions of GI ( gastro-intestinal) problems. There can be many sorts of pain in different areas throughout your entire GI track. I have experienced different symptoms of pain and problems for a very long time now, since I was 8 or 9, and all of it was worsened, we believe, by my Lyme infection. Since a very young age I had trouble with the fluid motion of my whole system, and keeping everything running smoothly. One thing we discovered after seeing the GI specialist was that I had acid reflux. Acid reflux is when the bodies esophagus muscles aren't strong enough to hold the stomach's acid where it belongs. This causes pain, 'heartburn', nausea, and irritation of the esophagus. I had mostly an issue with 'heartburn' and nausea, some vomiting at late night hours when I was lying in bed, and the acid was worse. I have taken multiple medicines to reduce the amount of stomach acid over the years, and have had to prop myself up at night. Since I got Lyme the GI track has been far more irritated, and I've had to have a special bed that mechanicaly inclines like a hospital bed, to encourage the acid to stay down (thank you gravity). I am most recently on Axid, which works more with encouraging the bodies natural ability to hold down acid and food with a small sphincter-like muscle at the top of the stomach, between stomach and esophagus. It does also reduce acid, called an acid inhibitor, or antacid. This is a prescription medicine.
I originally in April or May of 2008 wnet in for an endoscopy to see why the stomach was hurting so much worse since October 2007, when I got sick. They discovered multiple ulcers numbering up to 10. his was gtreated with antibiotics in case of H-pylori (bacteria can be in stomach, treated for it even though it was negative, I had it in the past in a stool test, and we treated it then too.) and other soothing medicines to heal the ulcers. Today, July 29 of 2009, over a year later I went back in for another endoscopy to see that the ulcers were gone, and the upper GI system is doing good. The axid is proved to be helping me.
I can't say that my stomach will stay well, as I am still on hard core treatments for Lyme and coinfections and don't plan to be well soon, but it is encouraging to know I am doing a little better in at least one area! :-)
I have a friend named Makayla who has gone through a lot with this Lyme Disease and Chronic co-infections, etc. She recently posted on a Lyme Disease Support group through Yahoo Groups about an incident that occurred. I wanted to post it here so that many more will see the seriousness behind this illness. It makes me question why no one can believe us when it comes to our serious condition! What if her mother hadn't shown up right then? Yes, read on!
I wanted to send you all an email, sharing an experience I had last night. I have Lyme/co-infections, as well as MCS (Multiple Chemical Sensitivities) . There for I wear sunglasses (light sensitive), earplugs (noise sensitive) and a mask (chemical/fragrance sensitive).
So last night around 9:15 p.m. my mom and I were coming back from a doctors appointment trip, and the car needed gas. With my MCS I can't be in the car when my mom is fueling up without getting a huge reaction which affects my airways. So my mom dropped me off at a park, which was down the street from the gas station....you can see the gas station and park from each other. She wanted me to take our pepper spray with me, since I am sick and for protection. So I had my sunglasses, earplugs and mask on. So I am waiting for my mom, and a police car drives up. 2 police men come out of the car, and ask me what I am doing. I told them that my mom was down the street getting gas and that I have MCS... I can't handle the fumes from the gas. One of the policemen says "Right" with the tone of "Yeah Right" didn't believe me. Then they pointed there flashlight at me and I flinched...light sensitivity. And then of course they have fragrance on them, so I was reacting and my lungs were burning and I was having a hard time breathing. So I told them, that I was about the step back, because I was reacting to their laundry soap. And the police man says again "Right" in the same tone as before...so I stepped back, and they stepped forward. Then I showed them the pepper spray that I had in my hand, like you can see it if you want. And he asked why I had it, I told him 1) that my over-protective mom told me to carry it and 2) because I am sick, I have Lyme and well to protect myself if something happened. He then say "Right" again. Then he asked if I was from around the area, and I said "No, I am traveling home from a doctors appointment, and my mom and I are on our way home." So then one of the men asked if I had ID, and I don't drive so I don't have one. So he asked me for all my information, gave it to him. And I see my mom pull up, and I say there's my mom. She runs out of the car yelling "If you have Cologne on, you are causing her damage." And telling them all that I had before. That I have MCS and can't be in the car while she gets gas, so that is why I was at the park. And everything else that I told them. Then they allowed me to go and say "Have a Goodnight", and I got in the car, put my oxygen trying to help me breathe better. And took all the detox agents that I had.
Let me just say my legs were trembling, and I was scared. Getting approached by police is scary, especially when you aren't doing anything wrong.
Anyway the point of this story, is that every Lymie or person with MCS should have a note from their doctor in their wallet/purse/ pocket that says that they're sick, and if you wear protective gear..the reason why you wear it. Something to protect yourself. Maybe get a MediAlert. It might help if you come into a situation like I did or something similar.
Me: What? As tears roll down my face, how come they didn't respect her serious condition? She is no lire, no one to be taken as a joke! No one should be disrespected in this way, by anybody else.
Last time I posted I was on a cocktail of herbs. I was taking about 35 pills daily. We determined that i was not getting the right improvement from the 'just herb' regimen, and we have chosen to add something to that!
I am now doing Penicillin Injections, which are a painful way of doing things but for some people can be more effective. They are deep intramuscular shots, so they are not like the oral antibiotics and are believed to be more concentrated, and they enter the body differently. might as well try it, right? Well this I have found to be pesky. I don't feel any better, my butt or 'hip' is always sore on one side or the other, and it's a shot every other day during the week! [The actual shot (for those who wonder) has a 1 1/2 in. needle, 2 CC.s or 2 ml. of thick ABX fluid, and is 'deep' muscular, meaning it is a very large shot. To give a comparison, the painful Tetanus shot is 1/2 CC of that painful fluid, this is four times that of a painful thick fluid. it also has 1/2 in. longer needle..... You can tell it is painful and long.] I requested for us to try the intravenous antibiotics, meaning the PIC Line, or IV fluid that goes directly into either my vein, or my heart. However we must try every other approach first!
I will be going back to my LLMD on the 17, so we'll see what he says about our check-up from the injection therapy.
One thing that Lyme Disease pushes you to do is take many supplements and medications! This is something we all have to go through. It's stressful, and very pesky, but important to keep every system of the body working right, because there is also Lyme patients that don't do so well unless they get their pills! ;-)
I personally can relate to LOADS of pills, and the cumbersome task of swallowing every one of them, up to 5 times a day! Most of these include the supplements, vitamins, and herbs required to fight Lyme naturally. Others may be for assistance in the gastric system, organ function, or are just prescription medicine for different symptoms. I remember the day when I was told by my MD (this was when I was very young, before Lyme) that I would start swallowing pills from now on! It seemed like the end of the world!
I never could have prepared myself for the place I am at now with my professional pill taking skills! In the beginning it started under 10 pills a day, and when we reached 10 it was scary. As doses rose and kept the pill count climbing, it reached 11, then 15, 20, 25! We were shocked as we were told to take more and more types of pills, and the count varied, and rose again to 35 pills a day, and finally we decided to stop counting. As I now am at full doses of multiple herbs to fight the Lyme, and others to fight Co-infections, some to improve Liver function, and lower levels of acid in my stomach, and others for basic vitamins, it has become necessary to upgrade from the biggest pill box CVS was selling at the time, to a custom made box. A bead box that is MUCH bigger and labeled here at home, with much larger slots too! :-) The sad part about the upgrade, is that in the new box we have a tally of 61 pills every day! That averages out to about 15 pills per serving, and I have my 'pill meal' 4 times a day.
On a positive note, what a way to lose weight! Why don't we all just switch to pill diets! I am so full by the time I'm done this tedious task that I have learned to only eat about 2/3 of the proportion I could have ate. Then I still give myself 15-30 minutes for my food to settle since they make me so nauseous!
As you can tell I make fun of it, but when the moment comes to load my stomach with this number of pills I am not thrilled, in fact more annoyed than anything!
Sadly but surely, I can relate! So to those of you pill taking warriors, it's okay!
Here are a few things that I have discovered to keep me going. It is important to be moving and social, because even though the world MAY look at you as sick and impossible, There are things we can do better than the rest when we are ill! One thing I have found and enjoy, as it gives me something to show off, be proud of, and enjoy is crafts. Things like knitting or crocheting, sewing, painting, beading, scrap-booking, sketching, and many more can give you something to have a goal for. A goal is important because you know you have something to work toward, a reason to live, and something to converse about with others! I have particularly picked up a great habit of beading that will, in the near future, possibly make me some money! I will have a big goal ahead of me! For this reason I know I have some worth, value, AND talent! The mysteries of beading have been clarified to me through books and online sources I have gathered! I experiment with patterns and forget that pain for a little while a day so I may pick up some wire and bead some more! How great is that, and I never imagined I would do so well with the colors, patterns, styles and so on!
I was at an event last weekend when Nancy (the leader of support group)'s good friend showed up and introduced herself. I didn't think much of it at first, but as we started talking I realized Nancy had spoken of me before and encouraged her about my beading work. She will be starting up a local artisan's shop where the work approved will be allowed to sit out on rented booth space for sale! What a chance for me to test this out and check my limits! In speaking with her further she explained that I can set my jewelry (if by her standards is acceptable) out in a display counter and see if it sells. I will make an income and a profit! She even was excited about my work! I am now testing many different methods of beading, crimping, styling, patterning, latches, colors, etc.! This is so special and beneficial to me as I will be able to make some money, learn some business and marketing, and see the result of great thinking, concentration, and hard labor! The opportunity is opening me up to change, new things, and creativity! Knowing that it will all work out in the end is nice too!
I also do scrap-booking from time to time and find it very special to a Lyme-fighter's senses, as it relaxes and exercises the brain. There are things I have done with scrap-booking that I surprise myself with! The talent and creativity required to sit and design page after page of art, pictures, and collected items from different places is spectacular! Seeing the aftermath of your unique concentration and effort makes it all the better as well! And for the people that aren't as crafty, it is great to just sit and put together a simple book containing memories from past life, without Lyme, and reminding yourself it will come again! Having something to look forward to, a light at the end of a tunnel, may be just what gets you by from day to day!
This is just what my personal experiences with artworking and crafts have shown me. As many I am not always in the mood to do anything concerning effort, but I have a lot of time on my hands with Home School that I never had before and I like to take advantage of it when I might!
As many may notice, when the weather gets bad, the barometer goes down, or the skies cloud over, you may notice the change in symptoms. I have come to realize that any change in weather, temperature, or barometric pressure increases the pain, and puts me into bed. over the course of a morning the sky can go from sunny to foggy or rainy, and I can go from okay to far below that!
If you are on the same track, understand that god is not punishing you, but testing you. You could have a great day and then be crumby the next week! It is just part of this illness and most realize the change in body when a storms coming, and I can even predict weather sometimes just by my grogginess.
As a storm comes closer the pressure in the Atmosphere usually increases causing the barometer to fall, and causing the joints in the body to feel greater strain. So if something's off, check the forecast!
Many feel this way in Winter and better in Summer, some feel worse in Summer better in Winter. It all depends what your Lyme Decides it doesn't like more....to put it more understandable. Every person is different but I can assure you that your increasing misery is shared with others, just stick through it and take it easy.
For me, I believe it is more than just the antibiotics to treat an illness like this. More than the herbs, the vitamins, anything. But for now let me talk a little about the medicines I have tried so far.
To start with, my LLMD recommended I start on herbal treatments before I even got the test results back. Here is a list of the herbs that were meant to fight the Lyme and co-infections over the past 1/2 year: Andrographis, Artemesia, and Cat's Claw. All of these and dosages can be found in the Healing Lyme book I recommend for reading. The necessary herbs were Milk Thistle for liver function, Probiotics for multiple reasons, a daily Vitamin, Vitamin B-complex, Magnesium, Vitamin D, Co Q-10, Fish Oil (Omega 3), and for sleep Valerian Root and time release Melatonin work the best. in total right now I take about 38 pills a day, and it is really tough on my stomach so I drink Aloe Vera Juice to coat the Upper GI track (throat and stomach).
In the beginning when the results were finally back as positive and it was time to treat, the LLMD put me on the above 'cocktail' of herbs and Biaxin. When that proved very little effective we switched onto Biaxin and Bactrim. Neither quite helped so after time we switched both of those to high doses of Amoxicillin. That was ineffective as well. Now I am on high doses of the above herbs and aiming for a herx, anything to show that the medicines are working. If you would like to look into any treatment like I have done, just remember that the side effects may differ. I have been effected minor and also have had increasing fatigue from time to time. it is said that Lyme makes cycles and gets worse for an allotted amount of time every 3/4 weeks.
Just to make it clear to everyone, my 'friends' a couple months ago that I posted about, bowling with them... did NOT come around. I canceled plans with my cousins so that I could get together with them and the day of, they all backed out! So, no bowling. But, you know, the truth is with us Lymies that no one can be a real friend unless they understand (or try to at least). So, If you feel you are not getting the credit you wish for fighting this illness by outsiders, I am here for you. The only time the school friends talked to me after that was a week or two ago when I contacted them and only ONE answered her phone, and she said she was busy anyway. I can truly understand and empathize with those of us who feel forgotten about, disliked, or just misunderstood! And it truly stinks.....(because we are still humans, and we are still us!) But it is the life god gave us to fight for. Women or Girls (especially teenagers) just feel that if you're not in the loop, then out of sight out of mind. I was deeply crushed when I was sitting at home that night, no plans because of these mean girls. We have to stick through it together! I just felt like it was important for me to post this and let all of us know, You are not alone! Even Myself, for I have to remind myself many times how much of a blessing it was for me to get pulled away from the selfish, untrue friendships I was in. And besides, I would never be accomplishing my life long dream with horses if it weren't so. The Hippo Therapy was foreign to me, as was my talent with them, until the awakening of this new chapter in my life. Truth is, We can make it through this! So contact a Lyme friend of yours today and let them know you can be counted on.... Because It(Lyme) is life now, At least we have a beating heart! ( If you need a shoulder to lean on, a friend to understand, or someone so you may feel guided, I am ready to try and help! email@example.com)
My latest little update. After almost 1/2 year, 5 months of fighting the ignorant Doctors and insurance company, I got the letter and now received the C-Pap for my condition called Sleep Apnea. It is most likely a symptom of the Lyme disease or co-infections, but it's something to treat and so I'm hopeful. I received the machine and mask set to level 6 (4-20 levels I believe) to keep air flowing in and out at night. If it helps a restful sleep, there is a chance I will heal faster because I'll be more rested. MAYBE even less fatigue!! I can't wait, and I am also worried that it will not help and will hurt really bad...
The only person I can think of with the same thing that would understand the awkwardness is my grandmother in GA. who suffers 'Fibromayalgia', sleep apnea, and other aches-- And she said it was just a get-used to process.
This is a little update and info on co-infections. Bartonella and Babesia are only one of the most popular co-infections in the tick disease community. (Bartonella is also known as 'Cat Scratch Fever'.) The marks for the traditional Bartonella 'rash' mostly appear somewhat as stretch marks in deeper purple or red along irrational spots on the body, but some get faded, these are stretch-mark impersonators that don't look anything to worry about. Young children, elderly people, even anorexic sufferers can get this awkward design on parts of the body(seen it in a book somewhere..). I know this from my mothers research to discover the cause of my bright purple marks on the inside of my thigh. They are slightly raised, and in the cork- screw shape almost like the spirochete itself! I was shocked when I first realized them one day trying on clothing. This was new, it just appeared, and was bright! (To make clear before continuing I have not yet been diagnosed officially with any co-infections as the IGeneX testing was too expensive for this workup. I have been assumed by my LLMD to have some sorts of co-infections, due to my symptoms and reactions to medicines.) These marks frightened me and I showed my mom. I had gained about 50 pounds over the year due to medicines, including growth in height, and foot size, and not being as active. I knew they looked similar to a picture I had seen before. Months later she was researching pictures on the computer and saw EXTREMELY similar marks from another female teen's thighs, and they looked exact...
So over time we concluded the reason and have printed pictures to show my LLMD next appointment. my brother has marks alike on his torso and shoulders, some on his legs that have gotten worse, moved, faded, and lengthened over the past year that we believe are Bartonella. My mom is getting him and my father tested for Lyme and making appointments for the LLMD.
So if you know someone or think someone has irregular marks, DON'T put it off for any further length of time, see a Lyme friendly Doctor and get the test done!!! A few herbs can take care of it for a length of time, or a while of antibiotics. I can't stress it enough how important it is to treat it ASAP... I would hate for more to suffer for a mark that looks like a stretch-mark.... But wouldn't you be concerned too if you were (or some cases are) in my shoes?
Babesia is similar, treatment and symptoms and testing. I may have that too considering my sleep issues, headaches, fatigue, and so much more similar symptoms. research up on this disease so you can help others near you!