Tag Archives: coinfections

Rest In Peace – Friend And Fellow Lyme Warrior

17 Feb

Jeremiah K

 

Rest In Peace – Friend and Lyme Warrior

I literally just heard the news so I am at a loss for words. It’s been a rough week and this really saddened me to the breaking point.

Jeremiah Katches was a good friend, father, husband, photographer, lyme disease sufferer and lover of life’s beauty. He was one of the only Lyme disease sufferers I knew who was near by in California. We never had a chance to meet in person because one of us was always too ill and neither of us could leave the house.

I just talked to Jeremiah on Thursday night and by Friday he was gone.  His last message was “I love u brother an don’t give up fighting …. I’ll keep u in my prayers an pray so hard something changes for u for the best”. That is the kind of person he was, always caring and thoughtful even in his suffering.

I wish doctors could help us and that even a psychologist could use their services for free to help those who are crying for help. Jeremiah was crying out for help the last few days and nobody responded to him. I had no idea until I just read his twitter. So sad and I feel like I could have helped had I known.

The first day I met Jeremiah he was always so supportive and optimistic. He talked to me about becoming a famous photographer. I hope his pain and suffering are gone and he knows that he was loved by many.

Jeremiah had been suffering from lyme and coinfections and he was vomiting frequently and had really bad insomnia like I do. I do not know how he passed away but i do know he was in a lot of pain the last few days and lyme was breaking his body down.

My thoughts and prayers are with his family, wife and two daughters. Rest in peace brother, I love you too….

 

Here is the last message from Jeremiah the day before his passing which I think speaks for us all and speaks volumes. May his death open more eyes and make people more aware:

 

“This disease like u said is destroying our lives an it doesn’t seem like anyone cares anymore. Not even our dr’s. I’m trying to stay positive just like I’m sure u are but it’s so hard to do when no one takes us serious. I’ll keep u in my prayers an pray so hard something changes for u for the best.”

 

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Read More About Jeremiah And His Story Below:

 

From lymedisease.org – HERE

From inannahouse.org – HERE

 

or visit these links (copy/paste)

 

http://lymedisease.org/news/touchedbylyme/another-fallen-lyme-warrior.html

http://www.inannahouse.org/july-2012.html

 

Sign A Petition For Jeremiah HERE

https://www.change.org/petitions/house-committee-on-veterans-affairs-allow-veterans-to-receive-prompt-and-adequate-medical-care

 

 

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Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida…

15 Feb

slip-man-hi

 

Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida, Insomnia…

First off … Happy Valentines Day to all of those who are lucky enough to have someone in your life who cares for you and you found love.

My Valentines was a rough one. First it started with my old friend insomnia keeping me up all night and all month nearly. Many people use the word ‘insomnia’ to describe staying up one hour past bed their bed time but to us true sufferers it means we stay up for days with little to no sleep at all. I couldn’t take staring at the ceiling in bed anymore so I got up and laid in my chair watching NCIS reruns all day. Then the tremors started getting worse.

I put on my PulseOX and my heart numbers fluctuated between 100’s (tachycardia) and shot down to the 50’s (bradycardia) within 2 seconds then back up/down and repeat. This is common when suffering from Postural Orthostatic Tachycardia Syndrome (POTS) which I have been DX’d with. My Oxygen levels went from 98% (normal) and went down to 89% (bad) just reaching for the remote and stayed at 89% setting the alarm off. I wasn’t too short of breath though.

More towards the evening the Neuro problems started to get worse then usual. I felt as if I was on a boat in choppy waters. I would stand up and look like I was starting a new dance craze. The best way to describe how I was walking is like a really drunk person in a wet suit with flippers on indoors. I’m sure it looked funny but it wasn’t fun. Vertigo set in so my depth perception was off and I was really dizzy, tipsy, off-balance and had all three types of vertigo at once; pseudovertigo, subjective and objective.

“There are three types of vertigo. The first is known as objectiveand describes when the patient has the sensation that objects in the environment are moving; the second is known as subjectiveand refers to when the patient feels as if he or she is moving, and the third is known as pseudovertigo,an intensive sensation of rotation inside the patient’s head.”

My usual “stone man” set in about 6pm as I have describe this before in an earlier blog post. To keep it short I feel like I turn to stone or rust up and can’t move in severe pain. It happens like clock work every night. The only thing that takes the edge off is my pain killers and time. My stomach started to ache about this time and I had sharp pains and bubble guts. It was more of a Candida issue and not the pain of C-diff which I had last year. Won’t go into detail on that or TMI. ha ha

Here it is 1 AM and things are finally starting to settle. I still feel very tachy in my chest and in my nerves. I truly believe stopping antibiotics has allowed Lyme and coinfections like my Babesia to thrive again. I will be starting a schedule to go back on antibiotics soon, I just don’t want that C-Diff or Candida outbreak again so a lot of probiotics it is. I think this proves that my Lyme disease and coinfections are very real and still active after 2 years of aggressive antibiotics treatment, injections, Picc … etc which the CDC (not a fan) says Lyme is cured with up to 10 days of antibiotic treatment (lies).

Not complaining in this post really I just like to share my real experiences and my daily life  to help others and answer questions. I am at peace with all my illnesses and I am an optimist who just wants to spread awareness. Hope everyone had a better day/night and that your lyme/chronic illness healing journey is going well. Take care for now…

 

 

 

 

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Lyme And Dental Issues

20 Jun

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Lyme And Gingivitis?

I have been told from many in the Lyme community that Lyme disease and coinfections can cause gingivitis or what appears to be gingivitis and dental issues. Not sure how accurate this is but I have heard of a few people who lost every tooth due to Lyme. I hope that is not common?

In my case in the past few weeks I have been having cuts around my gums near my teeth. There are 2-3 cuts in total and only on the bottom gums. They just came out of nowhere and it makes it difficult to brush. The cuts do not bleed unless I brush my teeth and accidentally brush over the cut. I do not have the bad breath or swelling like gingivitis so I wonder if one of my herbals are causing this?

I do brush my teeth at least 2-3 times per day, I floss daily and I use a good mouth wash. I have never had any dental issues in the past except for a cavity or two at check-ups as a child. I have always taken acre of my teeth so this is something new for me.

I also have been having really sensitive teeth lately. Anything from lukewarm to hot and anything cold are tough to eat. I have been using sensodyne toothpaste but it says if the problem lasts more than 4 weeks to see a dentist. This has been going on for years and ever since Lyme was at its worst.

I do notice one of my fillings has a hole in it now and I can really feel the hot and cold in that tooth. I need to have that filling replaced and preferably with a non-mercury Lyme-friendly filling.

My problem is that my insurance dropped me since I have SSDI now so I have no insurance until September. I cannot afford to see a dentists or doctor or to pick up my prescriptions that have been sitting at the pharmacy for 2 months. Gotta love Lyme and all of the crap that comes with it.

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Some More Kombucha Flavors

18 Jun

Kombucha

I have talked about Kombucha before but here are some flavors my mom found for me today. One is Hibiscus (No 3) and the other is Lavender (No 7) flavored. These drinks have enzymes and probiotics in them. I drink these in place of the Coke or Dr Pepper I once drank.

I do prefer the GT’s brand but there are many brands. If you want to know more about them visit GT’s web site HERE. If you have never tried one I say buy just one to see if you like it before you buy a bunch of them. They have the taste of tea, vinegar and the flavoring. It is an acquired taste.

Flavors from GT’s Brand
All Ages

Enlightened Organic Raw Kombucha

Original
Citrus
Gingerade
Multi-Green
Botanical No 3
Botanical No 7
Botanical No 9

Enlightened Synergy Organic & Raw

Trilogy
Mystic Mango
Cosmic Cranberry
Guava Goddess
Gingerberry
Passionberry Bliss
Strawberry Serenity
Cherry Chia
Grape Chia
Raspberry Chia

21 & Up (Due to traces of alcohol that may be found in the drinks)

Organic Raw Kombucha

Trilogy
Cosmic Cranberry
Gingerberry
Divine Grape
Superfruits
Strawberry Serenity
Maqui Berry Mint

Synergy Organic & Raw

Trilogy
Cosmic Cranberry
Gingerberry
Divine Grape
Superfruits
Strawberry Serenity
Maqui Berry Mint

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Vitamin Water XXX

I know these drinks are not good for you and have sugar in them but when I have my cheating days I like one of these. It is a Vitamin Water XXX which has Acai, Blueberry and Pomegranate in it. I like these for the vitamins, antioxidants and electrolytes they have in them. The electrolytes are great for those night sweats and sweating from Babesia and to help when you have diarrhea.

If you are going to cheat try one of these instead of a soda.I really like these taste of this one over all of the other flavors to choose from.

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You Just Don’t Get It

14 Jun

Got Meds?

You Just Don’t Get It

Lyme really changes our lives and we cannot help that we are no longer the same fun person we once were. I feel as if I am in a real life invasion of the body snatchers. I look in the mirror sometimes and I wonder who it is I am looking at. It is not depression as many people think but it is the feeling of being really ill and there seems to be nothing that can cure me. I don’t like feeling this way but that is my life right now.

I hear from so many people how their friends and family just don’t get why they can’t meet for coffee or go out for fun. Lyme and coinfections are really unpredictable little critters and we never know what day we will be feeling our worst. It makes it really hard to try and plan something with a friend when you have no idea if on that day you might be in the bathroom all day, puking all day, too ill to get out of bed…etc. Some of us are bedridden and never leave our rooms.

We are prisoners in our homes. There are some people with Lyme who are able to work, go to the gym, go out and have fun…. but that doesn’t mean all of us are that way. Each person, body and what diseases we have are all different. Just because Bob has Lyme that he has only had for one year and he can still work that doesn’t mean that I can work. I have had Lyme, Bartonella, Babesia and much more for 30 years and at one time I was able to work too but now look at me.

It is very difficult to explain to our friends and family why we cannot go to a movie on Saturday. We are sensitive to sound, light, smells and just being around a large crowd. It might sound made up or crazy but it is true. Going to that movie will make us feel even sicker and it might take 3 days of bed rest to recoup from that small venture out of the house. Knowing that one small task will make us feel so much worse for days is not worth the risk of going out for an hour or two.

I once took a trip with my parents to a nearby city for a 3 day vacation. I got very car sick and jet lagged on the ride. I remember seeing the beautiful view from our house we rented. Then I slept all three days and barely woke up just for dinner and back to bed. I didn’t even get to enjoy anything. There was a hot tub I wanted to use but I never got to use it. After that trip I really do not feel like going anywhere if it means I will feel so ill I have to sleep for days.

People like to compare their self to what we feel like. Let me just say it is not the same. I hate when I tell someone how I feel and they seem to think they know exactly what I feel like or that their situation is worse. I tell them I was up at night crying with so much pain that it was a 10-11 on the pain scale. Then that person will say “I know what that feels like I had pain today after I tried to lift a chair but it was much worse than yours”. No that is not the same pain.

I used to be pretty tolerant to pain when I was younger. I have broken plenty of bones and I even fell off of a bridge at work one time and got back up and started working again. I have cut my head open, got a concussion and continued to work with blood dripping all over. I have drilled screws through my fingers during a rush job at work. I am not clumsy it was just a very  faced paced job and very physical.

I have had my lower back give out on me and I was in a lot of pain and had to drag my self on the ground since I could not stand up. There are so many times I have had some form of pain but nothing compares to the pain that Lyme, Fibromyalgia and coinfections bring to your whole body. The pain is intense and on every part of your body where you have never had pain before. If I were to describe the pain and symptoms I would be here for weeks.

For some reason people like telling us how they “feel like crap” when they have a cold or flu as if they think they are on our level and going through what we are going through. Again not even close. They are looking for sympathy yet in years not one of them has ever shown sympathy for your Lyme. A cold and the flu are absolutely nothing compared to Lyme. Those are just one of 100’s of symptoms.

Lyme Is Overwhelming

Lyme and coinfections can be so overwhelming, confusing, and make you feel lost. It is so hard to tell someone in words just how you feel. There is so much going on in our bodies, our brains, and in our lives it makes you feel as if things cannot get any worse everyday.

We struggle with many things daily that people do not see. We battle with insurance, we try to get medicine covered so we don’t have to pay huge medical bills. Many of us have no income or spouses and we cannot afford to see a doctor. Many do not have medical insurance, do not have a place to live, have no money for medicine….etc.

Most people only know what they read on the internet from a web site that has no clue what Lyme is either. Some may have heard of the word Lyme disease at one time in their life and all of the sudden they are an expert on how we should feel and how to cure us. You hear things such as “oh you have lymes disease, well that’s good at least you know after a few pills of antibiotics you will be cured in a week or two”. Seriously? I want to slap those people.

Even when you tell someone that you have been on antibiotics for years they still seem to think you should have been cured in two weeks because the article they read says so. Well the person that wrote that article has never had Lyme disease and they are uneducated. They most likely are our enemy and tied to the IDSA.

Going Through The Motions

If I tried to explain what my Lyme and coinfections feel like I guess I could say it is a horrible, painful nightmare that just won’t end. For some the pain and depression become so mush that they take their own lives. Montell Williams has MS and he can relate to what we go through. He even tried to kill his self to end the pain and the nightmare. By the way I am not a quitter at anything and I think suicide is very selfish but yes the pain makes life not worth living at times.

This is how my days go and many others can probably relate and are even worse off then me:

I wake up at some odd hour in the afternoon and the first thing I wake up to is pain, dizziness, headache, cotton mouth, soaked bed from sweat, and I try to get out of bed. There is no sense of urgency or excitement since I know exactly how each day will be. I grab a water and try to rehydrate after sweating all night.

Next I take any pills I need to take on an empty stomach such as my thyroid pill and herbal tinctures. I walk very slow and tipping from side to side with a limp to my chair in the living room. I am still on a daze and I tend to stare in a trance a lot at nothing. I turn on the TV and find it really hard to focus on what they are saying.

About this time I start to get new pains (my usual pains) come over my body and I feel the need to rest my head. My dad will talk to me but most of the time I find it hard to follow what he is saying and it is hard to keep up. I then will eat dinner. I have no cravings anymore for food and I just eat because I know I have to.

After dinner I take my lump sum of pills that are to be taken with food and water. These include my much needed pain pills which seem to make me feel just a tad bit better and I am so thankful they still help me. I will watch TV for the next few hours and chat with my parents but I don’t really talk much.

Once the pain killers kick in and my pills give me a tiny boost of energy I will play games on facebook or answer friends messages. I also take this small window to update blog posts. Usually while sitting at the computer my neck is stiff, arms hurt and hands hurt from typing and I feel I just want to lay down. To a healthy person being on the computer is fun and easy but to a sick person it is a struggle.

After my hour of “fun” I will go to my room and lay back in bed. I will watch my recorded shows and maybe play a game or two on my iPhone. Hours later I hobble into the shower and then lay back in bed. I take my night time pills. I will watch TV until the sun comes up and usually fall asleep around 6am-10am on average.

During my rest I can either have CFS or Insomnia. I never know when each one will strike. Most nights it is insomnia and I get maybe 30 minutes to an hour of sleep. On a good night my CFS will make me so tired I feel paralyzed and I sleep for 6-8 hours never hearing anything. This is not usual for me since I was always light sleeper when I was healthier and I could hear a cricket fart at 100 yards away.But when the CFS is bad my eyes are always heavy and I find it hard to stay awake even if the house was burning down.

The next day I repeat the same process. Pretty exciting stuff huh? I am just going through the motions and waiting for something to progress. I know one day I will have somewhat of my life back but until then I am patiently waiting.

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Added Samento, Banderol and Pinella

3 Jun

Day One: Samento, Banderol And Pinella

(Update) Week one and I am up to 15 drops twice per day and moving to 20 drops tomorrow. I haven’t been having any big die-off reactions but I have noticed an increase of sweat. I have been soaking the bed more than usual and have been feeling very warm, burning in the forehead and the chills. These are my usual daily symptoms but I do notice and increase in intensity and volume of sweat.

Day one

I have heard so much positive feedback on these three droppers that I decided I would give them a try. I was warned by a few people and by the bottle to only start with one drop. I put 10 of each in some water seprated each by 15 minutes apart and waited a minute or two to drink it. Did this twice today. So far I don’t notice any difference. Don’t do as I do only start with 1-5 drops twice per day.

The Samento and Banderol are a microbial defense. They are said to help break down biofilm and help with cyst form Lyme. The Pinella is used as a brain nerve cleanser. They are all three herbal tinctures. Right now I am using a combo of these tinctures; Lyme Specific Formula, Cryptolepis, Samento, Banderol, Pinella and Dr J’s Allermac. I bought mine an Amazon but you can find them at other online stores. iHerb will ship Samento refrigerated for freshness.

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Using Samento and Banderol

Use these drops 30 minutes before any meal and on an empty stomach. I use them right when I wake up in the evening time about 1 hour before dinner and later at night/ early morning 2-3 hours after I have a snack or my late night fats for malarone. Do not take the drop with your antibiotics, wait a couple of hours or take them before hours hand.

Normal doses are 1-5 drops of Samento in plain water (I use a shot glass full) and wait 1-2 minutes before drinking. Then wait 15-20 minutes and and then add 1-5 drops of Banderol to the same amount of water and wait 1-2 before drinking.

You can use these while on antibiotic treatment and I hear that if you are at a plateau where your antibiotics stop working then that is the best time for these drops.Check out the video below for a doctors comments on the droppers.

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(Marty Ross MD on Banderol and Samento in Lyme Disease)

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A List Of My Supplements And Herbals

31 May

(Just some of my daily supplements/meds)

My Supplements and Herbals (* must have)

*Vitamin D3

*Vitamin B Complex

Natural Vitamin E

Vitamin A, C, E & Selenium

Amazon Spiro

Calcium

Magnesium

Devil’s Claw

Fibro Essentials

Kelp

*Chanca Piedra

*CoQ10

Sleep Essentials

Echinacea

*Omega 3 (Krill Oil)

Acai Berry

Niacinamide

Adrenal Essence

Rhodiola Rosea Extract

Goji Berry

*Milk Thistle

Saw Palmetto

Resveratrol

5-HTP

Grapeseed/Green Tea/Pine Bark

L-Arginine

Aretmisinin

D-Limonene

Cat’s Claw

Oregano Oil

Pau D’arco

Chlorella

Tumeric/Ginger

Tart Cherry Extract

Butcher’s Broom

Chromium Picolinate

Chloline & Inositol

Holy Basil Leaf

Olive Leaf

Ribose

Gluthathione Precursor Complex

Sarsaparilla Root

Horsetail Grass

Coconut Oil Soft Gels

Seriphos

Colostrum-LD

Potassium Citrate

Samento

Nutramedix Banderol

Pinella

Lyme Specific Formula

Cryptolepis

A-EB/H6

Vitamin B12

Vitamin C

Chia Seed

 

I’m sure there is more I am forgetting…… I am not taking all of these daily these are just all of the ones I have tried. At one point I was up to 45 pills per day.

 

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