The Ugly Truth

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

Lactaid Deficiency

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 Treatment Started 6-17-09

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.

GI Symptoms with Lyme Disease

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! :-)

Scary Truth

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!
Makayla:

Hi Everyone,
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.

Later, Makayla

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.

Bicillin Injections

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.

Elaina

Heavy Pill Load

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!
Elaina