Disabled, Self-Care & Lyme 

21 Mar


Lyme & Self-Care 

I always thought when my parents were older I would be the one taking care of them and showing them appreciation for everything they’ve done for me in life. Little did I know I would become disabled and they would be taking care of me the rest of my life. Chronic, late-stage Lyme disease has made me disabled. I don’t like that word but it’s true, I can no longer take care of myself or do most of the things I used to be capable of. I don’t know what I would do without my parents. 

My parents are both at retirement age and my mom is showing signs that her lupus/CFS are coming back out of remission after 20+ years. My dad has health issues of his own. So I feel like I need to be there for them and help them with their needs. I didn’t know I would be on a fixed-income after working hard my whole life and educating myself for a solid future. I have no spouse so I make under poverty level income but I am thankful I did work for 16 years and have some sort of social security income. Medicare as we all know doesn’t cover much with Lyme and I have no idea if they have dental insurance? 

I fear daily that my parents may get worse or have health issues and we all will be laying here in bed with nobody to take care of us. I have a sister but she’s not reliable nor does she ever care to learn the illnesses I have. I have another “sister” by bond but she lives a few states over and she is barely hanging in there herself. Just have to keep hope alive that something gets better for us all. This post was mainly just me thinking out loud but also maybe someone can relate to what I am saying. Have a great weekend Spoonie family. 

Dehydration – Dry Mouth Tips 

21 Mar


Dehydration – Dry Mouth Tips 

If you have been following my blog for a while you know I have a chronic dehydration problem. Not just the POTS issue where I need fluids but I also have a generic problem where my cells cannot retain water or something of that nature. When I go to the ER they always say I have chronic dehydration but I think it’s called “chronic intra-cellular dehydration”. 

With my dehydration I literally have a very dry mouth like the Majave Desert. I can drink 8 bottled waters and still have severe thirst. I can take a drink of water and my mouth will literally dry up within seconds of swolleing the water. I’ve never had a quenched thirst or moisture feeling in the last 5-6 years since Lyme was getting neurological and debilitating. 

I have no idea what a moist mouth felt like until I tried this genetic Target brand “Dry Mouth Oral Rinse”. I always remind myself to pick some up when I rarely go to the store since it’s right by the pharmacy but always forget. I finally remembered. I took my first cap full tonight and my mouth felt moist for at least 5-10 minutes. Something is always better than nothing right? It felt great to to have that dry tongue, dry teeth and throat feel in my mouth for once. If you have dry mouth, cotton mouth from mmj..etc, I highly recommend this stuff. 

In the picture above are my Lyme essentials since Lyme can cause sensitive teeth, gums, nerves in your mouth. It is hard to brush sometimes when you are hitting nerve endings in your gums. The sensadyne toothpaste helps some and the sensitive mouth wash also helps a little. If you have a sour mouth or Lyme issues you might want to give these items a try. Good luck. 


Gammagard IVIG Infusion 

13 Mar

IVIG Infusion 

I’m not doing so good, I’m awake in bed with the chills, headache and feel worse than usual. Took extra pain meds, migraine meds and they aren’t touching the pain. If you have been a reader for a long time you know I have hundreds of symptoms from different chronic illnesses but the IVIG usually gives me a bad reaction or aseptic meningitis. It’s possible I may wake up today with meningitis, usually comes days after the infusion. It’s very painful amd hard to do anything so I’m writing this now. I have severe muscle, bone, nerve, joint pain..etc and still haven’t been able to get in to get ketamine coma infusions. 

I don’t want to take any more pain meds since they are not helping. I took an Epsom bath but could barely get in or out. Drinking a lot of water to hyper hydrate as per my nurse. Took 1500mg of Curcumin as per my LLMD but it’s not helping. Just want to share my experience for those new to IVIG or those who know what I mean. My dosage is above in the picture and infused in 4 hours once a month with a 250ml saline bag. Don’t let this scare you though these are common side effect symptoms but the meningitis is not. My immune is slowly going up a few numbers so it is helping. I’ve tried other things to raise my immune but they don’t help. 

For those who don’t know I was born with little or no immune called Primary Immunodeficiency (PID). When I was 6-7 years old I was bitten by 3 ticks embedded in my skin. My low immune allowed the Lyme and other tick borne disease to invade my body and thrive. I was severely sick right after being bit for 3-4 weeks or longer than the flu but had flu like symptoms. I was re-infected again in 1999 when a few ticks but me in my backyard while playing with my dog. My dog got Lyme the same day I did and she passed away 7 years later. I had a rare case of “elderly pneumonia” but I was a teen and I nearly died from it. At the time they thought I had AIDS. But later found nothing to diagnose me with. 

I have a great retired ER nurse who comes over to do the infusions at my house. He is very knowledgable and friendly. I use pre-meds before the infusion which I have listed in a previous post if you need help. Without them I had severe migraines and aseptic meningitis more frequently. The last few infusions make me very drowsy and I couldn’t stay awake. I went to bed and slept sound for 20 hours and woke up not knowing where I was. I need to get some rest but wanted to update you. I hope you all are finding better days, stay strong we can do this!! 

My TGF-B1 Results 

11 Mar

Above: My Human Trans Growth Factor (TGF-B1) Results are back. The last results I think we’re higher. I haven’t driven the 2 hours to see my doctor yet and don’t currently have an appointment so I cannot remember what this test is specifically for? From what I have read it can be signs of cancer, disease, mold issues…etc. My results were high but they are in the normal Lyme or mold sufferers range from what I read. I’ve seen much higher. Maybe one of you can share exactly what this means in layman terms?  Thanks in advance! I will ask my nurse today but he is a retired ER nurse, not sure if he will know. 

Readers of my Blog

I just wanted to take a moment to thank you all for reading and for your comments. I do read all comments and sometimes I think I have replied but I didn’t so bare with me. I try to reply to as many as I can, when I have energy. I appreciate you all. Haven’t heard from Bill in a while I hope he is doing okay. There was also a lady who seemed to be ready to give up (suicidal) and haven’t heard back from her so I hope she is doing better. I think of you all and wish you all the best. We will all have better days coming and we will all get through this together. I’m always here. I don’t mind being open as long as I am helping others I am content. 

Have a great week Spoonie family! 

CFS/ME Is Finally Real & Renamed “SEID” & Yes Men Suffer Also 

7 Mar

I guess doctors finally believe in one invisible illness and studies have backed it and proven its real. Chronic Fatigue Syndrome (CFS or ME) is now being renamed “Systemic Exertion Intolerance Disease” (SEID). Doctors are said to finally be taking this seriously. That’s good news. 

I was watching Dr. Oz where they kept saying “women finally can feel relieved” or that only women have CFS/ME/SEID but that’s not true, men have it also and I am one of them. Kind of made me mad. They also did the same thing with Lupus saying only women have it yet men suffer from it also and I also have Lupus (SLE). Just because a majority of women have it doesn’t mean it’s only a female disease. So don’t believe everything you hear on TV or on the Internet. 

Just like Lyme disease is said to be an “easy cure” or it totally leaves your body after 10-14 days of antibiotics…..that’s total bull crap! They also say Lyme disease is not chronic, isn’t in other states or countries…blah blah all lies! The CDC and IDSA need to put the truth out there. Someone new to Lyme reads these things and gets false hopes of they may be told they don’t have Lyme only many years later to have Lyme get worse in their body and they are in a wheelchair, having seizures and cursing at the doctor years ago who told them they didn’t have Lyme. 

So I just wanted to add the fact that yes men have CFS/ME/SEID also. I have all if the symptoms and have been diagnosed with it from many primary doctors. They belived in it back when they diagnosed me but they always says there was nothing they could do to help. I tried daily self B12 injections (my B12 turned out to be high), I’ve tried everything but nothing can help the pure exhaustion, zero energy & lead weight feeling in your body. 

The only pro to having SEID is that it usually wins over my insomnia and I can sleep a lot better and longer. It’s a battle so my body is constantly confused. The insomnia wants to keep me awake while the SEID wants me to go to sleep, even while standing up sometimes. Just like my auto-immune disease and other diseases they are confusing my body and doing different things. This can be very exhausting to your body to have your immune constantly at war and your body at war with itself then adding Meds that are trying to help but add to it. 

I wanted to validate to my fellow male followers that yes your CFS is real and yes men have it too so don’t feel left out. Lol This is one step in the right direction for us sufferers and maybe some meds will be on the way that can help. It helps us feel validated. Now we need to get the other invisible illnesses studied and doctors to believe us/them. 

Have a better weekend warriors! Keep your head up, things will get better. 

Lyme Disease Challenge 

1 Mar

March 1st started a new Lyme disease challenge “take a bite out of Lyme”. Last year the ALS ice bucket challenge was not only trending and very popular but it also brought in a lot of money for ALS. Some ALS sufferers may actually have Lyme disease. This year we want to start a new trend and get Lyme popular and in the public eye so they can be more educated. 

We need to get the word out there that the CDC & IDSA are not helpful at all and they lie. They make it seem like Lyme disease is an “easy cure” and it’s not chronic. I’m sure you have encountered others like I do who say “what is Lyme isn’t that a thing where you get sick for 2 weeks” or something similar. We need to educate and the world needs to know Lyme disease is in every state and other countries. We need better care, more science/studies, we need compassion and to be believed when we go to a doctors office. 

Do your part by following any of the steps in the picture above. Most of us Lymies are taking a picture biting a lime and posting it on social media such as Instagram, Twitter, Facebook & Pinerest and include at least one fact about Lyme disease to educate others. Let get this going and hope it gets as much attention as the ice bucket challenge did. Hashtag your photo #LymeDiseaseChallenge 

IVIG Infusion

19 Feb


Had my monthly IVIG infusion last Wednesday. Most Lyme’s take IVIG (human plasma) to boost their immune to help with Lyme but I’m taking mine both for Lyme but mostly for my primary immunodeficiency (I was born with little to no immune and have it for life). Most Lyme’s also use Sub-Q IVIG which is different than what I use. There are many different brands and ways to infuse IVIG but I use Gammagard 10% 30g/300ml dose infused over 4 hours.

I didn’t have a chance to post about this last infusion until today because I haven’t been well. I had a bit of bad reaction again and slight brain swelling, inflammation. I’m doing a Lyme diet and anti-inflammatory diet plus taking anti-inflam medication and supplements but they don’t help me. For some reason doctors think these anti-inflammation things are miracles and can help with the pain but they don’t. Well at least in my case they don’t and doctors seem to not believe me that I feel no difference, it’s frustrating.

I was able to avoid the ER but that’s only because I hate going there and because I have every med they give me at the ER at home. I did all the precautions and pre-meds before the infusion and even added an extra 500ml saline after. It just seems to hit me every 5-6 infusions. Very painful. It makes you not want to continue with the infusions but I have to do it because I don’t want to end up on isolation getting sick from anyone that comes near me. I may be upping my dose soon or switching to 4 infusions per month.

I have a good nurse and he is a retired nurse from a hospital so he’s seen it all. He told me to tell everyone getting IVIG infusions to “hyper hydrate, that’s very important”. He recommends a half-gallon of water before the infusion or keep drinking just plain water until you cannot drink anymore. But you might want to add in some electrolytes like Gatorade or smart water..etc.

Hope you all have a much better week. Stay strong and do your best to carry on and don’t let your illness define who you are.



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