Today was a better day. I got my blood drawn and they got a vein on the first try. Then Hollis, my angel nurse gave me my IVs and got a vein on the first try. That is unheard of!! We made friends with the new group and had everybody laughing about how I had to throw a ham over the house in order to marry H E. We’re back in our room and I’m resting up for the big day tomorrow. I get my big booster! They draw my blood. Then it takes two and a half hours to process it. Then they have to get it back in my body within fifteen minutes. Then one more day of IVs, then HOME!! It’s pretty hard traveling with my wheelchair. Thank God for Henry Earl!!

Six months post stem cells have found me back in LA for my “booster”. I’m sure today will be the most interesting day here. As we were entering the Infusio building, a woman came toward us that I just knew looked familiar. Just as she passed us I loudly said (as if I knew her) “Melanie Griffith!”. She turned around, walked back to us, and shook our hands as H E smiled and told her we were from Mississippi. We talked about Lyme disease a bit, she wished me luck and went on her way.

Then on to Infusio where they hooked me up to the ever loving diagnostic machine. I then met Dr Kim so we could go over what has changed since my last diagnostic test in October. Let’s just put it this way. About the only thing that shows improvement is my brain and cognitive ability. My adrenals have improved too, which is great and I am thankful for these. But when you hear a doctor tell you that all of your internal organs have been damaged and/or compromised, it will bring reality slamming you down to earth. My heart, liver and kidneys have taken quite a beating. I knew this, of course, just didn’t want to hear it again. My muscular/skeletal report is horrible, thus all the pain. My stress levels are through the roof and my lymphatic system and my immune system are screwed to the max.

All of this information leads to getting blood work done tomorrow. I have to fast after midnight which doesn’t really matter since she told me to quit eating anyway. 😩 She put me in the lymphatic draining bed. H E got me through that by saying stupid things to make me laugh.

Dr Kim added one teaspoon of baking soda in a glass of water to my home therapy program to bring down my acidity. That’s minor compared to the rest of it. I take pills called DAO, Histamine Scavenger, CBS, Reishi Mushrooms, and SAMe. I drink one teaspoon of psyllium seeds with a swallow of orange juice, one teaspoon of clay (yep…clay) in a glass of water, two liters of nettle tea, one liter of water, and a hot turmeric drink at bedtime. Don’t ask me what any of these are. I couldn’t tell you. I just do as I’m told. I have to continue this for a year.

In other news today 🙄 we returned to the hotel and ate a $138.00 lunch that would have cost me $10.00 to cook and I’ve been in my room since just crying and ready to give up. I’m sorry, but I’m just not as strong as people think. I’m tired of fighting and just plain tired. I hate this city! Sirens, horns, yelling, screaming, construction, destruction, ridiculous prices, and rude people who think anyone from Mississippi is a hick and stupid. H E met a man (that looked homeless) at !!!Starbucks!!! buying coffee 🙄🙄🤪 and when H told him he was from Mississippi the man said, “Mississippi isn’t worth a s*%+! Then proceeded to tell him he was the ruler from Florida to Texas and all the way up to Maine. H told him he must not be a very good ruler if he messed Mississippi up so bad. 😂🤣😂

I am homesick and ready to go back to my peaceful MISSISSIPPI home. I’ve missed my grandson’s birthday (yesterday) and my son’s birthday today.

I’m beginning to lose hope and that scares me. Please keep me and HE in your prayers. This is so hard on him too. Hopefully I’ll be in a better frame of mind tomorrow.

What a journey this has been so far! I know the Drs told me it could take a year or two for the cells to reproduce and get all thru my system but this is HARD!!! I’ve kept my spirits up pretty well, mainly because I have a caring and funny husband. But there are days…..like when I have to do tax things for my accountant in bed and Kyna decides to jump right in the middle of all my paperwork! Just one little thing sends me over the edge. I’ve been unable to walk for eleven weeks as of yesterday. It has really been a challenge. About two weeks ago I got very proficient in a wheelchair. I thought great, now I can get around! Well if you’ve ever spent time in a wheelchair you know how hard it can be. I do my best. I actually washed some clothes and folded them today. Little steps. My fatigue is staggering! I have taken a few steps on my walker so things DO continue to improve. My joint pain continues to plague me but I’m somewhat controlling it with Ibuprofen. Insomnia has gotten much better. I have to go back to LA in April. I am not progressing very well so I am getting a booster. Infusio does a blood draw, cleans it and puts it back to boost my immune system. Plus I’ll get those great infusions everyday. Whoopy! (Not) I miss my children and grandchildren so much. Nothing cheers me up like the grands. Thank you everyone for your thoughts and prayers. I still have a whole lot of hope!

 

Just when I thought nothing else weird could happen to me, it did. I have been trapped in my bed for eight weeks. I can’t walk because of pain in my left ankle. Whatever this is attacked both my feet, ankles and one knee. Dr Kim told me to start doing castor oil wraps. That’s where you rap the affected area with a castor oil soaked cloth and put a heating pad on top of that for one hour each day. Like so many other things in this weird disease, I rolled my eyes and thought that’s not going to work! But, low and behold, it did work. It worked everywhere except my left ankle. Dr Kim thinks that my losing weight so fast has caused my body to release lots of toxins in my body. Whatever this is has lodged there and will not go away. So Friday night I was sitting here watching more old movies. I bit down on a piece of chicken and the cap popped off of my lower right back tooth. About the same time the filling fell out of my lower left back tooth. Of course it was Friday night so no one could help me. And the tooth that the cap fell off of was very sharp and cut my tongue. It was impossible to eat and drink. So yesterday, January 15, I had to load up in my wheelchair and my husband took me to the dentist. He temporarily filled both teeth. My dentist also said because of losing weight so fast my whole bite had changed since the last time I had seen him and that’s why the cap and the filling popped out. I’ve been wanting to lose weight but it’s almost more trouble than it’s worth! Otherwise, I think I would feel great if I could just get out of this damn bed!! I’m trying to keep my spirits up but it’s getting really hard.

Got home last night (December 14) after going to the Ruleville Hospital by ambulance on Tuesday (12th). My stay at the hospital was an ABSOLUTE waste of time. All I wanted was to get a blood test and get my feet/legs x-rayed. I had to go by ambulance because I can no longer put either foot on the ground. I knew no one there would know anything about Lyme much less stem cells but I thought I would be able to show them emails about the tests CA wanted and go home. They not only wouldn’t run the tests I asked, but they wouldn’t contact CA!! They told me I had a UTI, which they later admitted I didn’t. That was their excuse for my low grade fever, which I still have. They brought the x-ray machine in and I was getting ready to tell them not to touch my feet or ankles, when, low and behold, they tell me they are there to do a chest x-ray which they told me didn’t come out clearly, nothing to do with my feet at all! At this point I thought I was dealing with a Dr just to find out he was a nurse practitioner. Next thing I know they have wheeled my bed into another room to do a video conference call with a Dr in Jackson who tells them to keep me overnight to observe me!! He knew nothing about Lyme either, but I guess they thought they were covering their asses. To make a long story short, I’m back at home, absolutely nothing has changed, but I am curled up in my own bed with my precious dogs and I am content. Trying hard to de-stress this weekend. Maybe next week will be better.

43 days post stem cells.

When I got home from LA I felt worse than when I left. Tired was an understatement!! I still could not walk across a room without gasping for breath. I waited patiently on my adrenal medicine to come in by just lying around and napping. The diet plan was really a challenge for us too. Basically all I can have are cooked vegetables and a little fruit and three ounces of fish or chicken per week.

Then on Thanksgiving night, we had to go to Ruleville to get Henry Earl’s hand sewn up because he decided to carve it instead of the turkey. He got four stitches. When we got home I told H E my right foot felt funny. I woke up in the middle of the night with both feet swollen and red and very painful. Everyone’s guess was gout, but with that ruled out, it’s going on three weeks that I haven’t been able to walk at all. Lyme has attacked my feet, ankles, and knees. I’ve been able to take a few steps on my walker these last two days but it is excruciating. I heard from my LA Dr this morning and he wants me to be x-rayed tomorrow. We’re hoping it’s temporary but it can become permanent and I have to admit I’m scared. I’m not supposed to take antibiotics because it can mess with my new stem cells. I’m really between a rock and a hard place. I can only hope this is temporary and that sooner, not later, the stem cells will start working. But six months to a year is yet another long time out of my life. It’s really depressing.

I don’t know that I’ve ever been gladder to be home! LA is a horrible place to visit, much less live! The people are rude. There are horns and sirens blowing all day long, the traffic…OMG!! We got home about 10:30. The dogs were very happy to see us. 😁

Now I start feeding my stem cells the right things to make them multiply and fight and build up my adrenals. It’s almost a vegetarian diet for the stem cells, no sugar, no carbohydrates. My adrenals can’t have caffeine, so tea and coffee are out. It’s a real challenge. I can’t have very many fruits. I can’t have salad. There’s going to be a lot of vegetable soup! 😂 I can’t eat raw vegetables! It sounds crazy but I’m not taking any chances!

I can’t dye my hair, which I haven’t done in years anyway. But get this, girlfriends. I can’t have nail polish!!! That’s going to be harder than the diet!!😂🤣 One of my fellow lymers works for L’Oreal and she’s sending me some chemical free polish.

On the subject of being around people, the clinic was very adamant about it. I am not to be in crowds, not even rooms full of people. I can have visitors, but no hugging and kissing which is hard for me.😩 You can’t even have the sniffles and there may be times when we ask you to wear a mask if I’m at a low point. In other words, it’s too much trouble to see me.😕 Kids in daycare and school are the worst. 😞 Any illness can be a real setback.

This will be my last post on this subject on FB. Everything else from this point on will be a learning tool for people who are going through Lyme and thinking of going to Infusio. There will be days when I feel fine and then there’ll be days when I crash. At 100 days, they reassess me and I might have to go back for a booster. But it could take anywhere from six months to a year to know if it has worked. My stem cells are reproducing daily. IF you want to check out what’s going on, you can always check in at lilslymelife.wordpress.com.

I want to thank all of you so much for your good thoughts, love, and encouragement. I couldn’t have done it without you. And especially thank my husband. He took every step with me and it was almost as painful for him. I didn’t think I could love him anymore than I do, but I was wrong.

Today was a very emotional day. We were so glad it was over but it was almost like we didn’t want to leave each other. We’ve been through so much together and we were so glad to be around others that had gone through the same hell. We had all been to doctor after doctor. We had all been diagnosed with wrong things. We’d all been told we were crazy and hypochondriacs. We all were finally diagnosed correctly and relieved, just to find out there was no cure. We all faced the fact that this was going to be our lives. We all found Dr. Philip Battiade. And we all walked into that clinic with a glimmer of hope on our faces and little by little became a family. I was the oldest in the bunch so I gathered all my little chickens under my wing, with H’s help, and we powered through. When I cried the day I got stuck twenty eight times, they all cried with me. All of these”kids” were under thirty. Some had gotten this disease at birth! And there are two things I can’t get out of my mind: how many people are walking around with this disease and haven’t been diagnosed and how many people know they have Lyme and can’t afford Dr Battiade? Something has GOT to change!!!

This is my family and I pray we all get well! We WILL stay in touch!

And our great nurse, Hollis!

P. S. Wouldn’t you know while I was getting my stem cells, Sylvester Stallone came to visit.

But I’d rather have my stem cells.

Deleon, our masseuse extraordinaire, whose folks are from Greenville, MS!

The Dr says the stem cell count averages 60,000,000. This was mine. The more to heal me with!!!!

Stem cells!!!