Progress has been a slow go this past week. I truly thought I'd be better than this by now. My doctor said to continue the upper doses of hydrocortisone for a few more days and then back off slowly. I can't tell you how fatigued I am. It's not a normal fatigue or exhaustion. It's more like some kind of mega-vaccuum is sucking the life out of me.
I spoke with my Lyme friend today. Sierra Integrative Medical Center gave her life back to her. Not only did it put her back on her feet, but she is on a steady incline of good health. She does have to go back once in a while for a "clean up" treatment, where they just clean out the bad stuff building up in her body in order to keep her immune system strong. This is not a mandatory thing, but she said most people opt to do it because it strengthens them each time. She had Chronic Ebstein Barr and went back for a treatment for that. (She also gives herself ozonation shots when she gets ill.) They call those treatments "tweaks." The initial treatment is 4-6 weeks of living out there and going through intense homeopathic therapy.
At this point, we don't know that it's something we can do, but I'm going to continue looking into it. There's as much bad said about the clinic as good. I don't know why. I don't know if some people are responsive to this type of treatment and others are not, I just don't know. I know my doctor has confidence in it and that speaks very highly of the clinic and their treatment in my opinion. He would never endorse something if he weren't convinced.
I also know that Randy Travis was treated for Lyme Disease at Sierra. After going all over the USA to find a cure for losing his voice (his voice specialists couldn't find anything wrong with his throat or vocal cords) and other things caused by his illness. Now, he's back to doing everything he loves doing. He goes back every year for preventive care which he says protects his health.
Moving on...
Thankfully, my LDN - low dose Naltrexone, is helping the pain and inflamation. The pain med I had before took the edge off the pain, but then the pain only increased after I had been on it for a while. The LDN has enabled me to go off that med and still feel some relief. Granted, it only makes the pain more tolerable...most of the time, but at least it's working and with no side effects.
It's amazing how you can become accustomed to a way of living. It's all you know and you don't realize how bad things get at times. The past two months have been a time of renewing awareness for us.
Thank you for your prayers and support. It always does my heart good to receive messages of concern, love, and prayer support.
Blessings,
~Linnette
Hydro-cortisone...My Life Saver
I went to the doctor with my list and went over the entire past eight weeks. I told him everything I could possibly think of. I sat there overwhelmed for a moment trying to figure out where to start. But, I finally just plunged in and told him every little thing I wrote down or could remember. I also got his email so I can email him when I need to instead of trying to talk through the nurses. Talking through nurses is so frustrating. There's just too much stuff and it's all so complicated to try to relay everything third person. So...
Basically, my body is in "crisis" mode. It's overloaded with illness and pain and gut stuff (pancreatitis) all at once. And it's causing my neurological system to go bonkers. So the brain is trying to figure out how to deal with it all and fix everything. In doing so, it's trying to shoot out cortisol (adrenaline) in order to give me the boost I need to heal or make things work right, but there's no cortisol to shoot because my adrenal glands aren't functioning right. No cortisol and the body goes into shock and starts shutting down. Addison's disease.
So, he wants me to up my hydro-cortisone for 7 days and then go back to my normal amount. If I relapse after decreasing, he wants me to double it again for another seven days and then back it down gradually. The hydro is not healing me but, basically, that's what is keeping me alive right now. This is not because I became dependent from taking the hydro-cortison. The hydro-cortisone is what saved my life after the heat stroke I had almost three years ago and it probably saved me again last night. I literally felt like I could go to sleep and never wake up.
Doc still thinks I have sub-acute pancreatitis (thanks to the bartonella co-infection), but we just "didn't happen to catch it in the blood work." Those were his words. I said, "The story of my life." He smiled sympathetically and said, "Yeah."
He also thinks my blood is clotty, causing the migraines...thanks again to the bartonella! So, I'm going back on the Nattokinase (supplement). I was supposed to have stayed on it throughout my treatment, but I quit taking it because of money...trying to cut cost. Anyway, if that works, we'll stick with it. If it doesn't work, he knows of a medication that worked for another patient to keep the red blood cells elastic instead of sticky and he said we can try it.
The bartonella lives in the red blood cells and makes them sticky. They stick to each other, forming tiny clots that make the blood thicker than it should be. Makes it hard for the blood to flow properly. A lot of Lyme patients have strokes because of this. Anyway, this other patient described all the same head issues I described to him and he showed a marked improvement on this medicine. We'll see if the Nattokinase works, first. If it doesn't, we'll try the other med.
He gave me permission to use whatever enzymes work for me, so when I'm finished with the Zenpep($$$), I'll try another one I used while waiting for my Zenpep to come in. They seemed to help when this pancreas stuff first arose and it might be cheaper than the prescription...have to check into that. Of course, I was on the vegan diet then, too. If it doesn't work, I'll simply return to the Zenpep.
He's taking me off the Armour Thyroid for now (it's backordered indefinately) to see how I do. He said there really isn't any good replacement for it. I think it's the most natural thyroid med out there. The others are synthetic, I think. At any rate, he didn't think it worth trying the others at this point.
He's hoping that increasing the hydro-cortisone will give my body the support it needs to get me over this hump. I did feel a small measure of strength return after taking a double dose this morning and I've taken it twice since. Yesterday, I was too weak to get up and take my meds, so I went without it until bedtime...the very medicine I needed to help me.
He said this illness (chronic Lyme disease) is a beast that's hard to conquer and we have to keep plugging along with baby steps for now until we get to where we need to go. He said if we had $15,000-$20,000 for it in the budget, he would send me where I could get well much more quickly...completely clean my system out. I have a friend who did that and she's cured.
I asked him about diet. He told me the same thing he usually says...low carb and make sure I get protein.
That's about it. I know I often say that prayers are so appreciated, but I also want you to know that I feel your prayers. I do. And I thank you.
Blessings, Linnette
PS ~ Since posting this, I have learned there is Adrenal Support supplements available that help to heal the adrenal glands so they can once again produce cortisol. These can only be given to you through a health care professional such as a nutritionist, chiropractor, or other practitioners licensed to sell them. I did not go off my Hydro-cortisone cold turkey. I gradually eased off of it, replacing doses with the Adrenal support. I'm currently still in the experiment mode. I do feel weak and tired a lot. I haven't been doing this long enough to know for certain what the contributing factors are. I'll keep you posted.
Basically, my body is in "crisis" mode. It's overloaded with illness and pain and gut stuff (pancreatitis) all at once. And it's causing my neurological system to go bonkers. So the brain is trying to figure out how to deal with it all and fix everything. In doing so, it's trying to shoot out cortisol (adrenaline) in order to give me the boost I need to heal or make things work right, but there's no cortisol to shoot because my adrenal glands aren't functioning right. No cortisol and the body goes into shock and starts shutting down. Addison's disease.
So, he wants me to up my hydro-cortisone for 7 days and then go back to my normal amount. If I relapse after decreasing, he wants me to double it again for another seven days and then back it down gradually. The hydro is not healing me but, basically, that's what is keeping me alive right now. This is not because I became dependent from taking the hydro-cortison. The hydro-cortisone is what saved my life after the heat stroke I had almost three years ago and it probably saved me again last night. I literally felt like I could go to sleep and never wake up.
Doc still thinks I have sub-acute pancreatitis (thanks to the bartonella co-infection), but we just "didn't happen to catch it in the blood work." Those were his words. I said, "The story of my life." He smiled sympathetically and said, "Yeah."
He also thinks my blood is clotty, causing the migraines...thanks again to the bartonella! So, I'm going back on the Nattokinase (supplement). I was supposed to have stayed on it throughout my treatment, but I quit taking it because of money...trying to cut cost. Anyway, if that works, we'll stick with it. If it doesn't work, he knows of a medication that worked for another patient to keep the red blood cells elastic instead of sticky and he said we can try it.
The bartonella lives in the red blood cells and makes them sticky. They stick to each other, forming tiny clots that make the blood thicker than it should be. Makes it hard for the blood to flow properly. A lot of Lyme patients have strokes because of this. Anyway, this other patient described all the same head issues I described to him and he showed a marked improvement on this medicine. We'll see if the Nattokinase works, first. If it doesn't, we'll try the other med.
He gave me permission to use whatever enzymes work for me, so when I'm finished with the Zenpep($$$), I'll try another one I used while waiting for my Zenpep to come in. They seemed to help when this pancreas stuff first arose and it might be cheaper than the prescription...have to check into that. Of course, I was on the vegan diet then, too. If it doesn't work, I'll simply return to the Zenpep.
He's taking me off the Armour Thyroid for now (it's backordered indefinately) to see how I do. He said there really isn't any good replacement for it. I think it's the most natural thyroid med out there. The others are synthetic, I think. At any rate, he didn't think it worth trying the others at this point.
He's hoping that increasing the hydro-cortisone will give my body the support it needs to get me over this hump. I did feel a small measure of strength return after taking a double dose this morning and I've taken it twice since. Yesterday, I was too weak to get up and take my meds, so I went without it until bedtime...the very medicine I needed to help me.
He said this illness (chronic Lyme disease) is a beast that's hard to conquer and we have to keep plugging along with baby steps for now until we get to where we need to go. He said if we had $15,000-$20,000 for it in the budget, he would send me where I could get well much more quickly...completely clean my system out. I have a friend who did that and she's cured.
I asked him about diet. He told me the same thing he usually says...low carb and make sure I get protein.
That's about it. I know I often say that prayers are so appreciated, but I also want you to know that I feel your prayers. I do. And I thank you.
Blessings, Linnette
PS ~ Since posting this, I have learned there is Adrenal Support supplements available that help to heal the adrenal glands so they can once again produce cortisol. These can only be given to you through a health care professional such as a nutritionist, chiropractor, or other practitioners licensed to sell them. I did not go off my Hydro-cortisone cold turkey. I gradually eased off of it, replacing doses with the Adrenal support. I'm currently still in the experiment mode. I do feel weak and tired a lot. I haven't been doing this long enough to know for certain what the contributing factors are. I'll keep you posted.
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