Archive | January, 2015

Sensitive Teeth & Gums Tip

31 Jan


With Lyme disease we get very sensitive to all senses (sound, sight, touch..etc). But also our teeth and gums are very sensitive. It can be painful brushing our teeth and using mouth wash. Even cold or hot water can be painful. I eat sour candy to help with nausea and the acid will make my teeth extremely sensitive and I can feel nerves being hit when I brush near my gums.

Using my normal toothpaste was very painful and my whitening mouth wash made it worse. I could barely brush on some teeth without getting tears in my eyes. I found using Sensodyn Pronamel helps with this issue. Makes it a little easier to brush my teeth with less pain. After a week my teeth are less sensitive. I just can’t eat lemon juice or sour candy as often I need to. Hope this tip might help someone out there who knows this issue.

Making Juices With My Nutri Ninja

31 Jan


Making Drinks

I’m not a nutritionist (although I’ve taken courses) but I just wanted to share some tips and general recipes I use for healthier drinks. I like to drink a ton of water, tea, kombucha with my illnesses. I cut out soda, sugar and caffeinated drinks. Recently I added a Nutri Ninja blender to make my own juices that I normally buy at Jamba Juice or the store. The blender is great, I recommend one but it is very noisy so plug your ears. I will post a couple of my juicing favorites below.

Remember when you make a drink to use fresh ingredients to get the most nutrition and health benefits. You can use frozen but go fresh when available. Remember that many fruits have natural sugars in them and that you can get many vitamins in the drink so be aware of the supplements you are using. Below I will list the general ingredients I use in my juices but I don’t have an exact measurement of how much to put in since each Ninja blender cup is a different size. I use the large size cup most of the time. Add or subtract things for a taste you prefer. I peel and chop most ingredients into small cubes.

Garden Green Drink

Kale (wash thoroughly)
Cucumber (peeled)
Celery (peeled)
Green Apple (I took the peel off it upsets my stomach)
Ginger (peeled, a little packs a punch)
Lemon juice
Pink Himalayan Salt
Water or Carrot juice

Strawberry, Blueberry, Banana Smoothie

Almond Milk (I use vanilla flavor)
Kale (only a small piece)

If you have a juicer have fun creating your own favorite drinks. You can use soy milk, almond milk, cashew milk rice milk, coconut water…etc you can make it to fit your diet and your needs. You can add cashews or other nuts for flavor. You can add flax seed, chia seeds, protein powders to add a boost to the drinks. Add ice, yogurt, milk or frozen fruit to make it more of a smoothie but I find adding bananas makes it a nice thick smoothie type consistency. You can find a lot of information online with exact recipes but the blender comes with a recipe book for drinks for men and women. Have a great weekend Spoonie family.

New Lyme Treatment

28 Jan


New Lyme Treatment

*Don’t get me wrong on my last post, it was a general post on doctors and not about my new LLMD. I was just trying to say how it’s the same thing over and over with Lyme. The doctors have no idea how we feel and they’ve seen exaggerators so many times so one person’s “severe pain” may feel like nothing to another. So each case is different and I feel like sometimes they think I’m exaggerating when I say my pain is so bad I can see why some choose suicide. We just want some validation, relief and hope. This new Lyme doc seems like she may be helpful and I am going to follow her treatment. Plus I did enjoy the day out with my mom who helps me so much and looking at the scenery on the way. No matter how much pain you are in or car sick… Take time to look around and enjoy the beauty life has to offer.

New Treatment List:

Rife Machine (to kill Lyme/Bab/Bart )
FIR Sauna (detox)
Epsom Baths (detox)

Argentyn 23 (silver the kind that doesn’t turn you blue)
Nystatin (for my candida) 500,000 unit tablets (suspension has sugar)
Candida Support (I use Now name brand)
Curcumin (anti-inflam) 500mg three times daily
Boswellia (anti-inflam) 350mg three times daily
Fluconazole 100mg Tue/Thur/Sat once a day
Minocycline (the only abx that helps my brain) 100mg Mon/Wed/Fri
Doxycycline (maint dose) once a day

After 2 weeks on Fluconazole get a blood panel for

ANA with reflex (lupus test)

And she wants to check my EKG results from the ER.

I have been on all of these a few times and currently am on some of these treatments. I highly recommend Curcumin (been on it 4 years) since I’ve heard so many good things about it and studies. The only new one in the bunch is Argentyn 23 and boswellia which I was supposed to try years ago but never did. The FIR sauna is also one that I wanted to purchase long ago but heat makes me so much sicker so I wasn’t sure I should try it. This new Lyme doc thinks Rife is one of the best ways to kill off these bugs. I think the Rife is helpful but my Lyme brain forgot I owned one.

Visit To My New LLMD

28 Jan

Picture I edited from yesterday’s trip to LLMD

I’ve always promised to be 100% honest on this blog so others with Lyme get the truth and not something watered-down or sugar-coated. Well here is the reality with Lyme and doctor visits with how I’m starting to feel….

I hate every doctor I’ve seen since I first went to a doctor complaining of chronic pain and a bad knee. A doctor at that time told me I was “a young kid who was making up things to get attention and time off work”. You better believe I gave that doc a piece of my mind, many f-bombs and I even later got my revenge and he was fired after I gave my honest answers on a survey about my visit with him. I found out he was like that with others. Since then my view of “doctors are caring, compassionate gods” changed to “doctors are assholes” (sorry for the language). Since then I’ve had maybe 2 decent doctors out of 30 or more doctors. That’s not a very good ratio. And that is from many different medical centers.

As for my LLMDs they are the only doctors I trust or like. But I’m starting to realize things with them too. My older LLMD seemed to favor female patients and even visited them in the ER or text them daily to check on them. Most were early stage lyme & not very sick. With me he never replied when I text him, he never called back or answered when I went to the ER. I would call to leave a voice message and nobody would refill my prescriptions so I would be out for weeks. He kept pushing aggressive antibiotic treatment on me although I had bad c-diff and severe flesh eating candida. I was told to stop antibiotics yet he wanted me on even more than the 3 I was already on? Makes no sense and he had no idea what I was going through. I lost the ability to walk and that didn’t change things. I was told I was “too complicated”. Plus visits averaged $1,200 a visits (with in house meds) and treatment was going to be $6,000 a month and back then I had zero income plus I’m not wealthy nor is my family. So I moved on.

My next Lyme doc was very thorough but pretty strict and not the joking type. He asks a question you better answer it exactly or he would ask again very loud. Even though I told him my short and long term memory were very bad he still wanted exact dates of everything from my past. I can’t even remember what I did yesterday! So if I would say “I think is was November ” he would reply “you think! I need exact dates no thinking”. Sheesh I don’t know I don’t remember and I don’t feel good so cut some slack. But he was a good doctor don’t get me wrong just very strict and to the point. Well I started to like him once we got passed the questions part he started putting things together and testing me for many things that all came back positive. He was a huge help and even took some of my Medicare so visits weren’t bad as far as price. After a few visits he was puzzling things together when he told me he could no longer see me “I was too complicated plus he is no longer taking Medicare anyway”. So I moved on.

Went to my first visit with Hynote. She was so nice and so awesome. My first visit she talked for 3 hours and only charged me for 30 minutes. She was so interested in my whole life story and all my illnesses and other things she was like a mad scientist ready to take me on. Almost like Dr House on TV when he finds a rare case. She started doing genetics testing and I was positive on all. She started telling me why I was allergic to the sun and vitamin D and why I have chronic dehydration….etc. My next visit she started more tests and putting more things together. I took a lot of tests and she was so excited to see the results and tell me all about them. She was really smart. But she didn’t look well that day and she had scabs all over. A few days later I found out she had passed away. So there went all that testing and results I was getting and my records were in probate for a while so we couldn’t get the results. So we moved on since she was the owner of that Lyme center they closed and a non-Lyme doc took over.

Started seeing a new LLMD who was putting some things of her own together but she didn’t know what Hynote was doing and not familiar with genetics and things Hynote knew well. So all the Hynote stuff came to a cease and no results. Started back on treatments I’ve already tried and weren’t successful. They still weren’t successful and made no difference. But the new LLMD did get me on IVIG finally since my immune was low enough that Medicare would finally cover most of the treatment. I still had to pay $550 for each infusion but better than thousands. So she was helpful and was one of the only docs I didn’t mind visiting. But she has left the Lyme center for a good cause. So I had to move on.

Yesterday was my first visit with my new LLMD (DO). It is starting to feel like Groundhog Day (movie) where it’s the same routine each visit. Tell me everything and I will try ‘my treatment theory’ on you. But the problem is I’ve pretty much tried them all so I am just repeating treatments. My latest treatment is taking a maintenance dose of Doxycycline which I’ve been doing for 5 years. I’m taking Minocycline (at my request since it’s the only med that reaches my brain barrier and helps with head pressure). I’m back on fluconazole and candida meds but fluconazole can be bad on the liver. Im told to try a gluten-free, sugar-free, dairy-free, egg-free diet because that is probably why I have so much pain! As I told her I don’t drink any dairy, don’t eat eggs, rarely eat sugar…. But I do eat gluten currently but I’ve already tried that same diet for a year. I was off all gluten and everything and notched no difference. I just have osteo issues since I was a baby. And I will be taking silver but not the kind that turns you blue. Pretty much everything I’ve been on for years.

I was sitting in my chair with my sunglasses on (since her lamp hurt my eyes), I was slouched in my chair in pain and sicker from the 2 hour (one way) car ride and she tells me I’m “rebellious”? She told me I can do a ozone colonic/enema and I said “no that’s the one thing I’m not trying I’m not a fan of enemas even at home”. That’s when I was called “rebellious” but she pointed at me in the chair as if I was Joe Cool. I said “I have no quality of life and the only thing I have to look forward to is my tv shows and what is for dinner so now I’m going back on diet and can’t eat food I like and I don’t need to be violated again with an enema as I laughed and joked”. She said at least I had a sense of humor still. But she was telling me “I’ve given up and that’s why I’m not getting better.” Yeah okay. I do everything doctors ask me to do like a lab rat and I feel no better at all or any difference but I keep doing it everyday and buy things I hear about on my own to get better. You think I want to live like this? Every doctor I see tells me they will get me back to normal then later after treating me they tell me I’m too complicated and my Lyme is too old to treat with antibiotics so we just have to try and give me a quality of life. So forgive me for not too excited that a gluten-free diet again will get me back to “normal”. Lol

I guess I’m just starting to see through the BS and fluff. I’m not giving up I’m ready to kick Lyme’s ass!! I do my own research and help others. I try anything I hear that works. I’m just tired of paying money I don’t have to try some things I’ve already tried many times or to tell my life story for 30 minutes again and again to pay $500 for my story and no answers or results. I’m just as sick as I was when I started treating 5 years ago. And some things are getting worse. So I’m going to try all that she recommended but I’m giving my honest opinion when it’s done. She also just questioned if I was only there for pain meds and told me how she is against pain meds and thinks turmeric can do the same job. Doctors have no idea how much pain some of us are in.

What made me mad yesterday was I was told my first visit will be 15 min to see if I like the new doctor and it would be “free”. Then I was told since I need a refill on my pain meds (I’ve been on 15 years) that I would have to pay for a 30 min visit. I ended up paying $550 out of pocket because she kept me there over 30 minutes asking me questions. I didn’t know I was paying by the minute. It’s not a shrink’s office. I had to take yet another urine drug test to get my refills like a criminal thanks too all the prescription drug abuse going on and new law. I also have to see a doctor in person every month (although I can barely leave my house) to have a face to face to get my pain meds. But when you go to get a refill they act like “you’re only here for pain meds? We need to get you off them you are a junkie”. They force you to go get your meds but then treat you like you are only there for drugs and you’re a bad person or druggie for asking? Wtf is medical care coming to? I guess I’m just fed up with all this run around and no answers. I’m not feeling good so maybe I’m grouchy tonight but that’s what is on my mind.

Hope you all are having better luck and success, sorry for a negative post but I’m just getting tired of being called names or treated like a druggie for trying to get some pain relief. Stay strong.



Back Stretcher For My DDD & More

25 Jan


I bought this back stretcher on Amazon for $9.99. I have DDD, many herniated discs, bone on bone, spinal cysts, spinal stenosis….etc so I needed a way to crack and stretch my back at home since I can rarely leave the house. For $10 this thing was the only thing I’ve tried that actually cracks my back and stretches it out. The only con I have is when I put my hands behind my head I get extra dizzy and head rush. But that is my own issue not the product’s fault. I can’t use an inversion table because I will pass out with my POTS and vomit. So this is a cheap way to help your spine out. Just wanted to give some tips about things I use that are cheap and helpful. This may not relieve the pain but it’s good to stretch the spine out daily.

Bought A Nutri Ninja IQ Juicer

25 Jan


Nutri Ninja

I’m not going to go into the health and recipes since that uses way too much brain power which I don’t have but I wanted to share an item I really like. I had a juicer before and after making one juice drink it was a pain to clean up and it uses a lot of fruits and veggies that cost a lot. I took the juicer back after one use and continued to buy my drinks from local stores. Well now I have a Nutri Ninja and this thing is awesome and easy to clean up (it’s dishwasher safe).

Being ill we should all try to get as much nutrients as we can (I know some of you have allergies or use TPN with feeding tubes sorry this can’t help you). I like to get the garden green drinks or green goddess drinks from Jamba Juice it local juice or vitamin shops. Now I can make my own at home. This new Nutri Ninja is $99-$140 depending on what you get with it as a package deal. Target has one for $99 but it’s missing the small cup and heathy cook book. I bought mine on Amazon for $119 and it comes with 3 cups you blend in (small, ,medium & large), the blending base, the blade, juice recipe book, and a pretty nice healthy cook book.

I made my first drink last night (pic below) but I didn’t let it blend all the way so it had some pulp. I bought the Ninja with auto IQ so it knows when to stop on its on and it pulses so it blends very well. You can put fruit, nuts, veggies in it and it can handle them. This thing is better than a blender and better than a Nutri Bullet because mine is 1000 watts and the Bullet is only 600 watts. It’s a nice color with stainless steel and black. Has suction cups on the bottom to hold it still.

It’s very easy to use and cleans up in minutes versus hours like I had with the expensive juicer. So it’s pretty Spoonie friendly. I recommend this if you want to juice or want to upgrade. The only issue I have with it is the noise. I’m sound sensitive so the noise is a little loud but almost like a blender with ice. If you are looking for a healthy cool new toy this is it. Remember to use all fresh ingredients to get the most nutrients and health benefits.

Green Goddess (fresh Kale, lemon juice, cucumber, celery, green apple, carrot juice, lime juice, baby spinach)


Backed Up From Your Meds? Here Are Some Tips

25 Jan


Backed Up From Your Meds? Here Are Some Tips

I don’t want to go into TMI (too much info) but I know many of you reading this have troubles with IBS, GP and other digestive issues. I’ve had IBS-D for half my life and it really took a lot away from living when I was healthier. But Norco helped my IBS-D a lot. But now I have trouble with getting backed up due to my pain medication such as my morphine.

Here are some tips to help get things moving and going a little better in the bathroom. These are things that help me and my mother who suffers with really bad issues.

1) I take a spoon or cap-full of Miralax (Costco Brand) every night before bed
2) Stool Softeners – if things are really dry & not moving or rock hard, take one gel capsule or up to two but don’t take them everyday just when needed
3) Hydrate! Make sure you stay very hydrated everyday no matter what
4) Eat or drink a lot of greens or fiber. The green goddess drink may help you out
5) If you have hemorrhoids or a lot of inflammation & pain back there then try a hemorrhoid “cooling gel”. If you don’t like that feel or mess of gel then try moist wipes or medicated pads with witch hazel it really cools and heals fast
6) Sitz Bath – I don’t use one but my mom swears by this thing. Put warm water in the bath which goes over the toilet and it will help with pain and more
7) TP – make sure you are buying a soft, good quality brand even if it costs more it’s worth it
8) Pre-Biotic, Probiotic & Enzymes are also a big help
9) Change your diet and eat less fatty foods and more fiber healthier foods in your foods

I’m sure I have many more tips but my brain can’t think of them. I hope these tips some of you. Have a much better week and stay strong and stay positive.