In my first post I told that my illness skyrocketed after I was injured. In this post, I will explain my injury.
In 2011 I severed my elbow and broke my wrist. I lost all feeling in that arm. It became swollen to about 3 times it's normal size.
The injury happened at 1pm. I went to a clinic nearby, the doctor there told me I needed to find a neurosurgeon because of possible nerve damage. Since that doctor decided he wasn't qualified to treat my injury, all he could give me for the pain was extra strong Tylenol. A severed bone and a broken wrist...yea that Tylenol was a joke.
I was admitted to the hospital later that afternoon. A doctor checked out my X-Rays and told me for sure he couldn't just set the bone. It would take surgery...
It was so late in the day already, surgery had to wait until the morning. I was finally given morphine at 10 pm that night. Nine hours I was in pain with no end. I was knocked out when the pain was finally under control. Falling asleep after this was great, especially considering I am a chronic insomniac and usually sleep is not that easy to accomplish.
The next morning I was woken up for surgery. They told me it would be short and I would be back soon. Easy right? I was just glad they were about to let me go back to sleep.
Next I was taken to the operating room. The anesthesiologist started her job and told me to count back from 100. I made it to 92 fine, kinda started waffling... and then she told me to keep counting. I ended at 89 when I finally went out. This was about 7-7:30 am. I couldn't wake up until 4:30 in the afternoon. When I did finally wake up, it was sudden. I was wide awake.
This was odd for me. I normally only slept a few hours a night...I had just slept through the night(not well but I did) and then again through half the day. Where did this come from?! I was supposed to be knocked out half an hour.
I had the cast on for 9 weeks. The cast started a few inches past my shoulder all the way down to cover half of my hand.
A few weeks after getting the cast off I started physical therapy. 9 weeks in a cast, I could hardly use my arm. No strength at all, couldn't even hold a pen. I still had pins and needles in my hands and fingers. My elbow could hardly move, my wrist bent downward somewhat, and my thumb and pointer finger were paralyzed. (even today I have not regained 100% of the feeling in my hand)
I hated it. I have never hated something this much ever before. It was so painful. It hurt more than the injury itself most sessions.
I followed their regime for six months. I gained some mobility back in my elbow and I could bend my wrist downward.
I went back to the doctor for him to check my progress. He looked at my arm and said "You can feed yourself now with that arm. You don't need anymore physical therapy. Good luck"
I was absolutely floored. I was 13, my arm after six months moved enough for me to feed myself so good enough.
My wrist didn't even move upward. I could flex my hand down, the highest I could move it was even with my arm. My elbow wasn't much better. I could not even come close to fully extend it or touch my shoulder, though I could now bend all of my fingers.
13 years old and less than half of my normal arm function was "Good enough"
I moved on and spoke to my ND. To my surprise they had answers for me. They use a device that emits far infrared laser, it is used to speed healing.
I would go to the ND twice weekly and they would use the laser coupled with massage and another device called a "precusor" from my shoulder to the tip of my fingers. In two months my arm was 95% normal and my strength was returning to normal. It wasn't painful and the results were astounding, after each visit I could see that my arm had improved.
After these two months with the ND with laser therapy were up, I was officially done with anymore treatment on my arm. This whole deal with my broken arm is what caused my LD to go out of control and land me where I am today.
Showing posts with label babesia. Show all posts
Showing posts with label babesia. Show all posts
Saturday, January 2, 2016
Wednesday, December 30, 2015
I Don't Know What to Expect
I leave for Hansa in just a few days! I am getting excited. I could finally start the beginning to the end of my chronic lyme disease and co-infections.
I cannot even fathom living without these symptoms. Whats it even like??
*flashback time*
I contracted lyme and co's in 2010, we think. I was bitten by a tick for sure. I saw it with my own eyes. This wasn't the beginning of my symptoms however.
I have had some form of insomnia my entire life, when I was a baby it took a long time for me to fall asleep and I never napped. (so I have been told)
I have also had fatigue and low motivation for as long as I can remember. I don't know when it began, it just became intolerable after my tick bite.
When I was around eight years old my parents took me to an allergist who started me on allergy shots. I hated the idea then and I hate that I did it now.
The doctor said my fatigue was caused by allergies. According to their skin prick test I was allergic to dogs, cats, grass, pollen, milk slightly, and mold off the charts.
My parents went with it. Seeing as I didn't have much of a choice in the matter, I hoped for the best.
Around six years later I finished completely with the doctor and the shots, haven't seen him since.
Guess what? It didn't make much of a difference in how I felt. According to their skin prick test I was less reactive to the allergens, so the shots did something. Yet I felt the same.
Interesting right?
I am not saying I have had lyme since I was a little kid, but something has been wrong with my body and the cause is unknown. It could have been candida, parasites, food allergies, diet, or something else.
The point of this story, I don't know what normal feels like. I have always been tired and I have never slept.
Anyway, back to the present.
I begin treatment with a real doctor who has seen hundred or thousands of people just like me. I like that. In my life my pediatrician, allergist, DO, and ND have all said "I don't know" when it comes to my disease. While we didn't know about the lyme, RMSF, and babesia when I last saw the allergist or the pediatrician I was tired. They didn't have an answer.
Now I am going to see a doctor who understands, he's been in my place. That alone is valuable, I don't care what other credentials a doctor has. Understanding is one of the most import qualities a doctor can possess.
I don't expect to be cured or in remission after two weeks. That's just too unreasonable.
I do expect to have a treatment plan and guidance, I have never had a good one. I think the consistency in treatment will help me if anything.
My one goal I personally want to achieve with these upcoming two weeks is to be able to be able to eat and exercise.
I am a six foot four inch tall teenage boy. I should be able to eat!! I consume maybe 1,000 calories on a good day. I weigh about 137 pounds last I checked. To give you an idea of how large my arms are, I can reach my fingers around my arm, top to bottom. Easy. I do not have any muscle left. Exercise is just not possible for me.
Teenage guys have energy. They workout and make a point to look decent to other people(well...some). They are conscious of what they look like, not necessarily to impress anyone. Just look good.
Ha, not me man. My only attempt I make is to not look like I just walked out of bed when I go out in public. If I look that good, I exceeded my goal.
I have made attempts at starting a light exercise regimen so many times in the past its ridiculous.
Stretching was the first thing I tried, I stuck with it the longest I think. I would just do a basic warm up and basic stretching for about half an hour a few times a week. This was around the time I first went to the ND and was doing better before I got worse again and went to the DO.
Since then I have tried doing reps of just 2-3 pushups and sit-up plus a few other exercises mixed in. Several times I have been able to keep at it a while, a few days a week for a few weeks or month.
I just cannot keep it up though, I crash.
Its like my muscles and connective tissues cannot rebuild and repair themselves well. Now my joints and muscles are the strangest they have ever been(for lack of a better term). My knees will come out of joint and pop back in randomly, my fingers do the same, plus muscles spasms/cramps and they are just harder to control.
This is a newer symptom for sure. I am sure it has something to do with my body not being able to function properly. Not being able to eat enough its probably related to this also.
SO that's what I really want to get from the two weeks. If I can fuel my body and use it, I know I will be able to get myself to a better health standard.
Overall I expect much more to happen from two weeks of intensive treatment but this is the starting point I want to accomplish.
Three days until I leave!!
I cannot even fathom living without these symptoms. Whats it even like??
*flashback time*
I contracted lyme and co's in 2010, we think. I was bitten by a tick for sure. I saw it with my own eyes. This wasn't the beginning of my symptoms however.
I have had some form of insomnia my entire life, when I was a baby it took a long time for me to fall asleep and I never napped. (so I have been told)
I have also had fatigue and low motivation for as long as I can remember. I don't know when it began, it just became intolerable after my tick bite.
When I was around eight years old my parents took me to an allergist who started me on allergy shots. I hated the idea then and I hate that I did it now.
The doctor said my fatigue was caused by allergies. According to their skin prick test I was allergic to dogs, cats, grass, pollen, milk slightly, and mold off the charts.
My parents went with it. Seeing as I didn't have much of a choice in the matter, I hoped for the best.
Around six years later I finished completely with the doctor and the shots, haven't seen him since.
Guess what? It didn't make much of a difference in how I felt. According to their skin prick test I was less reactive to the allergens, so the shots did something. Yet I felt the same.
Interesting right?
I am not saying I have had lyme since I was a little kid, but something has been wrong with my body and the cause is unknown. It could have been candida, parasites, food allergies, diet, or something else.
The point of this story, I don't know what normal feels like. I have always been tired and I have never slept.
Anyway, back to the present.
I begin treatment with a real doctor who has seen hundred or thousands of people just like me. I like that. In my life my pediatrician, allergist, DO, and ND have all said "I don't know" when it comes to my disease. While we didn't know about the lyme, RMSF, and babesia when I last saw the allergist or the pediatrician I was tired. They didn't have an answer.
Now I am going to see a doctor who understands, he's been in my place. That alone is valuable, I don't care what other credentials a doctor has. Understanding is one of the most import qualities a doctor can possess.
I don't expect to be cured or in remission after two weeks. That's just too unreasonable.
I do expect to have a treatment plan and guidance, I have never had a good one. I think the consistency in treatment will help me if anything.
My one goal I personally want to achieve with these upcoming two weeks is to be able to be able to eat and exercise.
I am a six foot four inch tall teenage boy. I should be able to eat!! I consume maybe 1,000 calories on a good day. I weigh about 137 pounds last I checked. To give you an idea of how large my arms are, I can reach my fingers around my arm, top to bottom. Easy. I do not have any muscle left. Exercise is just not possible for me.
Teenage guys have energy. They workout and make a point to look decent to other people(well...some). They are conscious of what they look like, not necessarily to impress anyone. Just look good.
Ha, not me man. My only attempt I make is to not look like I just walked out of bed when I go out in public. If I look that good, I exceeded my goal.
I have made attempts at starting a light exercise regimen so many times in the past its ridiculous.
Stretching was the first thing I tried, I stuck with it the longest I think. I would just do a basic warm up and basic stretching for about half an hour a few times a week. This was around the time I first went to the ND and was doing better before I got worse again and went to the DO.
Since then I have tried doing reps of just 2-3 pushups and sit-up plus a few other exercises mixed in. Several times I have been able to keep at it a while, a few days a week for a few weeks or month.
I just cannot keep it up though, I crash.
Its like my muscles and connective tissues cannot rebuild and repair themselves well. Now my joints and muscles are the strangest they have ever been(for lack of a better term). My knees will come out of joint and pop back in randomly, my fingers do the same, plus muscles spasms/cramps and they are just harder to control.
This is a newer symptom for sure. I am sure it has something to do with my body not being able to function properly. Not being able to eat enough its probably related to this also.
SO that's what I really want to get from the two weeks. If I can fuel my body and use it, I know I will be able to get myself to a better health standard.
Overall I expect much more to happen from two weeks of intensive treatment but this is the starting point I want to accomplish.
Three days until I leave!!
Thursday, November 5, 2015
Current Treatment
In my last post I basically just gave a long list of the remedies I have taken in the past years. Today, I am going to describe my current treatments, and possible changes for the future.
My current protocol is helping, but it will certainly not be my saving grace. I still have pronounced symptoms on a daily basis and I still have flairs weekly.
I did have this under control at one point, daily symptoms were minor and I wouldn't get any major flairs. I want a repeat of this! I have stuff to do and places to be!
Ok here is the list of supplements-
L-Glutamine powder, 1 tsp per day
Artemisia Combinations, 2 pills 3x daily, 3 days on 4 off
Black walnut capsules, 2 pills 3x daily
POA phytolens(TOA cats claw), 1x daily
sublingual glutathione, 2-3 daily, 50mg each
ALA, 100mg 3x daily
5 MTHF, 1 daily
Dopalift, 1/2 cap daily
FIveHTP Thrive, 2 before bed
Calc.Phos. 30C, 3 pills 2x daily
1 calm magnesium packet daily
1 Methyl B12 injection weekly
Cinchona bark tea, made with 1tsp bark
Long list right? It needs to change, with as much as I am taking I should be feeling better.
Lets analyze and dissect everything I am taking, maybe something will stand out to you(please tell me if you notice something!). I already have a general idea of what I want to change.
The bacteria killers are, Artemisia, cats claw, and cinchona bark tea. Plus the black walnut, which is more so for parasites.
Artemisia and cinchona are strong, they are certainly making a difference. I haven't even built up to a high dose yet. At some point I will probably move up to 3 cups of tea. These are both primarily for babesia/blood parasites(if present). Artemisia might kill borrellia, I don't know for sure. All of the information on Artemisia and borrellia is conflicting, some say yes it kills it some say no.
This is strong enough for the time being.
The POA phytolens isn't strong, 1 cap a day(450mg). This isn't a significant dosage at all! This is my ND's preference for treating lyme...because it is TOA free, its supposed to be stronger. When I followed the Buhner protocol with cats claw, I took a huge dose compared to this. According to the Buhner protocol I should work up to 1-4 tabs 3-4x daily, each pill is 450mg! I know there is some conflicting info on the TOA free vs non TOA free, but there is NO WAY this makes one 450mg pill capable of replacing a max dosage of 7,200mg. Its not possible.
I would take more but, this brand he wants me to take is $38 for 30 pills. I want to call BS. That's nearly $1 a pill, its not considered one of the strongest remedies for lyme disease, and that is expensive. The Buhner protocol made a difference for me, this does not...
This will definitely change in the future, its way too expensive for something that is too weak to make a difference.
I take the Dopalift for alertness, fatigue, and low dopamine levels. I have been tested twice for neurotransmitter levels, dopamine was almost non-existent on both tests...
I did one bottle of this earlier this year, nothing notable.
Then I did the second neuro test he wanted me to do it again because I didn't take it long enough for it to have an effect. I put it off for a while, I want to treat the cause of my symptoms, not the symtpoms themselves. Low dopamine is a result of a stressed, infected body. Not a pill deficiency.
This second round with the Dopalift was different than the first, for one it made me quit sleeping. As soon as I started taking it I was wide awake almost until sunrise!
So I spoke to the ND, he told me to half the capsule. So far this is working fine for me, it may give me a tiny bit of energy, nothing significant. He did tell me I would have to stay on this a little while for it to really make a difference, which is fine. There are 60 pills in the bottle, and I only take half of one daily...the one bottle will last me 120 days at this rate. Already bought it, might as well use it. So for now this doesn't need to change.
The L-glutamine is for gut health. The stomach uses it in the stomach lining, without it we develop problems. I started this after the first neuro test, I don't really notice a difference. I already have the bottle, at the slow rate I am using it this bottle will last at least another 6 months. So for now, this has no reason to change. Its an essential nutrient and I already have it.
I have been on and off magnesium for years. Its good for pain, muscles, and detoxification. The body uses magnesium to create enzymes used for detox.
I noticed at first if I missed a dose of mag I would have more muscle and joint pain. Now its no big deal. Its needed for detox and most chronically ill patients swear by it, so it can stay.
5HTP Thrive is used for sleep, I started this with the last bottle of Dopalift. It may be helping me sleep harder, not earlier at all, but waking up has been easier lately. I will leave this one be because its new, it still has time before I can feel the full effects.
Glutathione is used for detox. This is an OK supplement, it doesn't seem to have any strong effects. I started this to help up my detox about a month ago. It may help some, but I wouldn't brag about it...
When I finish this bottle I will replace it with something new.
ALA I started because of the Andy Cutler protocol for chelation. It is supposed to help detox heavy metals from the brain. In the beginning it was VERY strong, I had to cut the 300mg pill into 5ths, and took two each day. For the time being I wont change this, it isn't as strong as it was,but I think I need to add in another chelator like DMSA. When I was taking both is when I felt the best.
Methyl B12 shots were something Dr.L wanted. I showed low for B12 on a test in the beginning so this was something she wanted me to do. I started with regular B12 but it didn't do anything. Gene tests showed I needed the methylated form of B12.
The ND during this time also added me onto his B-complex. It is a good one, the B12 is methylated, it has loads of B vitamins, plus it has a high dosage of each. According to the ingredients the B-Complex is stronger than the injection, but ill be honest. Neither of these gave me significant results. I don't test low for B12 anymore, I don't need to be doing both of these.
I have since finished the B-Complex, still working on my B12 injections. For the time being, I am going to finish the injections and come back to it.
The 5MTHF is something the ND wanted me to do because of the results of the gene test. I cant remember exactly which gene is the reason he wanted me to take this. This for now, I wont change. He feels really strongly about it and the whole methyl B vitamins can make a difference for some. Ill give it a shot for a while longer.
Then last is the Calcarea Phosphorus 30C. This is something I started on my own. I researched homeopathic remedies to help with scoliosis, and this is the one that matched me. It is for calcium and phosphorus absorption, so it really isn't for symptoms. It can stay too.
Now that the overview is established, what should change in your opinion?
I am not treating Lyme disease, or at least strongly. Babesia is covered well, but nothing I am taking will significantly affect borrellia.
Another thing is I need to work on chelation again. I had to take a break because it was wearing me out. I had to wake up at night to take the pills, keep track of the time and make sure I had DMSA and water for the next dosage. With low dose chelation it is really frowned upon to miss a dose, so i stuck to this strictly.
Now I feel like its time to add something stronger than just ALA.
To recap-I am going to get rid of the POA phytolens and glutathione, and add something in for lyme and heavy metal detox.
If anyone has a suggestion as to what herbs to add, please comment!
Ok, my fingers are tired and I am too dizzy to stare at this screen any longer, I am out for tonight. :)
My current protocol is helping, but it will certainly not be my saving grace. I still have pronounced symptoms on a daily basis and I still have flairs weekly.
I did have this under control at one point, daily symptoms were minor and I wouldn't get any major flairs. I want a repeat of this! I have stuff to do and places to be!
Ok here is the list of supplements-
L-Glutamine powder, 1 tsp per day
Artemisia Combinations, 2 pills 3x daily, 3 days on 4 off
Black walnut capsules, 2 pills 3x daily
POA phytolens(TOA cats claw), 1x daily
sublingual glutathione, 2-3 daily, 50mg each
ALA, 100mg 3x daily
5 MTHF, 1 daily
Dopalift, 1/2 cap daily
FIveHTP Thrive, 2 before bed
Calc.Phos. 30C, 3 pills 2x daily
1 calm magnesium packet daily
1 Methyl B12 injection weekly
Cinchona bark tea, made with 1tsp bark
Long list right? It needs to change, with as much as I am taking I should be feeling better.
Lets analyze and dissect everything I am taking, maybe something will stand out to you(please tell me if you notice something!). I already have a general idea of what I want to change.
The bacteria killers are, Artemisia, cats claw, and cinchona bark tea. Plus the black walnut, which is more so for parasites.
Artemisia and cinchona are strong, they are certainly making a difference. I haven't even built up to a high dose yet. At some point I will probably move up to 3 cups of tea. These are both primarily for babesia/blood parasites(if present). Artemisia might kill borrellia, I don't know for sure. All of the information on Artemisia and borrellia is conflicting, some say yes it kills it some say no.
This is strong enough for the time being.
The POA phytolens isn't strong, 1 cap a day(450mg). This isn't a significant dosage at all! This is my ND's preference for treating lyme...because it is TOA free, its supposed to be stronger. When I followed the Buhner protocol with cats claw, I took a huge dose compared to this. According to the Buhner protocol I should work up to 1-4 tabs 3-4x daily, each pill is 450mg! I know there is some conflicting info on the TOA free vs non TOA free, but there is NO WAY this makes one 450mg pill capable of replacing a max dosage of 7,200mg. Its not possible.
I would take more but, this brand he wants me to take is $38 for 30 pills. I want to call BS. That's nearly $1 a pill, its not considered one of the strongest remedies for lyme disease, and that is expensive. The Buhner protocol made a difference for me, this does not...
This will definitely change in the future, its way too expensive for something that is too weak to make a difference.
I take the Dopalift for alertness, fatigue, and low dopamine levels. I have been tested twice for neurotransmitter levels, dopamine was almost non-existent on both tests...
I did one bottle of this earlier this year, nothing notable.
Then I did the second neuro test he wanted me to do it again because I didn't take it long enough for it to have an effect. I put it off for a while, I want to treat the cause of my symptoms, not the symtpoms themselves. Low dopamine is a result of a stressed, infected body. Not a pill deficiency.
This second round with the Dopalift was different than the first, for one it made me quit sleeping. As soon as I started taking it I was wide awake almost until sunrise!
So I spoke to the ND, he told me to half the capsule. So far this is working fine for me, it may give me a tiny bit of energy, nothing significant. He did tell me I would have to stay on this a little while for it to really make a difference, which is fine. There are 60 pills in the bottle, and I only take half of one daily...the one bottle will last me 120 days at this rate. Already bought it, might as well use it. So for now this doesn't need to change.
The L-glutamine is for gut health. The stomach uses it in the stomach lining, without it we develop problems. I started this after the first neuro test, I don't really notice a difference. I already have the bottle, at the slow rate I am using it this bottle will last at least another 6 months. So for now, this has no reason to change. Its an essential nutrient and I already have it.
I have been on and off magnesium for years. Its good for pain, muscles, and detoxification. The body uses magnesium to create enzymes used for detox.
I noticed at first if I missed a dose of mag I would have more muscle and joint pain. Now its no big deal. Its needed for detox and most chronically ill patients swear by it, so it can stay.
5HTP Thrive is used for sleep, I started this with the last bottle of Dopalift. It may be helping me sleep harder, not earlier at all, but waking up has been easier lately. I will leave this one be because its new, it still has time before I can feel the full effects.
Glutathione is used for detox. This is an OK supplement, it doesn't seem to have any strong effects. I started this to help up my detox about a month ago. It may help some, but I wouldn't brag about it...
When I finish this bottle I will replace it with something new.
ALA I started because of the Andy Cutler protocol for chelation. It is supposed to help detox heavy metals from the brain. In the beginning it was VERY strong, I had to cut the 300mg pill into 5ths, and took two each day. For the time being I wont change this, it isn't as strong as it was,but I think I need to add in another chelator like DMSA. When I was taking both is when I felt the best.
Methyl B12 shots were something Dr.L wanted. I showed low for B12 on a test in the beginning so this was something she wanted me to do. I started with regular B12 but it didn't do anything. Gene tests showed I needed the methylated form of B12.
The ND during this time also added me onto his B-complex. It is a good one, the B12 is methylated, it has loads of B vitamins, plus it has a high dosage of each. According to the ingredients the B-Complex is stronger than the injection, but ill be honest. Neither of these gave me significant results. I don't test low for B12 anymore, I don't need to be doing both of these.
I have since finished the B-Complex, still working on my B12 injections. For the time being, I am going to finish the injections and come back to it.
The 5MTHF is something the ND wanted me to do because of the results of the gene test. I cant remember exactly which gene is the reason he wanted me to take this. This for now, I wont change. He feels really strongly about it and the whole methyl B vitamins can make a difference for some. Ill give it a shot for a while longer.
Then last is the Calcarea Phosphorus 30C. This is something I started on my own. I researched homeopathic remedies to help with scoliosis, and this is the one that matched me. It is for calcium and phosphorus absorption, so it really isn't for symptoms. It can stay too.
Now that the overview is established, what should change in your opinion?
I am not treating Lyme disease, or at least strongly. Babesia is covered well, but nothing I am taking will significantly affect borrellia.
Another thing is I need to work on chelation again. I had to take a break because it was wearing me out. I had to wake up at night to take the pills, keep track of the time and make sure I had DMSA and water for the next dosage. With low dose chelation it is really frowned upon to miss a dose, so i stuck to this strictly.
Now I feel like its time to add something stronger than just ALA.
To recap-I am going to get rid of the POA phytolens and glutathione, and add something in for lyme and heavy metal detox.
If anyone has a suggestion as to what herbs to add, please comment!
Ok, my fingers are tired and I am too dizzy to stare at this screen any longer, I am out for tonight. :)
Wednesday, November 4, 2015
Past Treatments and a lot of Pills!
As you know, I have been treating my Lyme disease and co-infections for a few years. In my last post I said I was going to list all of my past, today is the day!
Most of the bottles I saved are herbs/supplements, but I have a few prescriptions like nystatin and doxycycline. Here it goes, its long...
For chelation-
3 bottles of Total Chelate by nutriwest, Started March 2015, 1 pill 3x daily, worked up to 2 pills 2x daily
2 bottles of DMSA Synergy from GS nutrients, 100mg 1 pill once daily, 3 days on 11 off(Doctors protocol)
2 bottles of King Chlorella from Nutricology, 10 pills spread throughout the day
2 bottles of DMSA from living supplements, followed the Cutler protocol, first bottle was 12.5mg, 1 pill every 4 hours, 3 days on, 4 off. I started this June 12, 2015, finished midnight September 5, 2015
A total of 560 pills
Probiotics-
Culturelle while I was taking Doxy, 1-2 daily, 180 pills
3 bottles of Body Biotics SBO's, I started at 1 two times a day, ended with 2-3 twice a day, started early 2015, finished May 24
Bowtrol Probiotics, 1 bottles, 2 daily, September 2015
2 Bottles Innate Flora 20-14, 2 per day(IIRC)
1 bottle NOW Probiotic-10,1 3x daily
1 bottle Biotics research S.Boulardii 2 daily
1 bottle Colon Plus also biotics 1tsp daily
=710 pills, not counting powder
I know a few of these are missing, I took more culturelle, another probiotic from Natures Sunshine, and at least 1 other. Plus I consume goat kefir and yogurt often(not pasteurized), but those don't count here
Vitamins-
Vitamin K2 from NOW, 4 bottles(from memory, only saved two), 600mcg daily, started early 2015, finished in June.
B-Complex, 1 daily, Metabolic Maintenance 1 Bottle, Started around August 2015, ended October 2015
5-MTHF Metabolic Maintenance, 1 bottle, 1 pill a day. Started with B-Complex, 2 bottles
Active B12 Folate, Prothera 1 pill a day, 3 bottles, started with Doxycycline
2 Bottles of Esther C, doses varied the ND had me doing 10g at one point, end of 2014/beginning of 2015
Active MTHF Complementary Prescriptions, 3 bottles, 1 pill a day.
1 bottle of Liposomal vitamin C, 3 pills a day, started in Oct.2015
1 bottle of CoQ10 from Metabolic Maintenance, 1 pill a day, Started with B-Comp.
2 bottles of Lithium Orotate. 1 bottle from Swanson and 1 from Advanced Research, 1 5mg pill a day, started after 1st hair test.
Custom Multivitamin Powder from Metabolic Maintenance, 1.5 tsp per day, 1 bottle, Started end of January 2015
3 bottles of NOW vitamin D-3, 10,000 IU per day, Started with K2
Calm Magnesium powder, 2 tsp per day, started with doxy, I only saved 2 bottles but I have continuously taken it since Aug.2013. I am going to estimate 6 bottles.
1 bottle of Green pastures Blue Ice Cod liver/butter oil, 8 per day, same as K2
There is definitely more, this is just what I coudld remember plus what I saved.
=2,350 pills not counting magnesium and vitamin powder!
Herbs(another big category!)
Grapefruit seed extract, nutribiotics, 3 per day(IIRC), 2 bottles
1 bottle of Swanson Grapefruit seed extract liquid, both of these were spring 2015
4 bottles of Swanson Milk thistle, 2 pills 3x daily, Started June 5, stopped end of Oct 2015
3 bottles of NOW Eleuthero capsules, 3 pills 3x daily, same as grapefruit seed extract
13 bottles of Swanson Andrographis Paniculata, 3 pills 3x daily, I started this early 2015
1 bottle of NOW Andrographis, same dose
2 bottles of Natures Sunshine Black Walnut, bottle one Aug., b.2 October 2015
2 bottles Artemisia Combinations, started 8/20 ended 9/5, 2015 B. 2 same as b2 black walnut
3 bottles of NOW Cats Claw, 3 pills 3 times a day, same as andrographis
2 bottles POA Phytolens, 2 pills 2x daily, 2015
2 bottles NOW black walnut/wormwood complex tincture, Feb. 2014
10bottles cryptolepis tincture from Montana Farmacy, first dose 15 drops, ended at 1/2 tsp 3x daily, started May , ended August. 2015
3 bottles Alchornea Cordifolia, 1/4 tsp, June-July 2015
1 bottles Sida Acuta 1/4 tsp, August-Sept.1
1 bottle Houttuynia tincture, Montana Farmacy, 1/4 tsp, June-July 2015
1 bottle Nutramedix Cumanda, started June 5
1 bottle Nutramedix Quina, started June 5
1 bottle Nutramedix Pinella started May 15
1 bottle Nutramedix Burbur started May 15
3 bottles of Biocidin from Bio Botanical Research, started around December 2014
2 bottles of Humaworm, bottle 1 January 2015, b.2 May 2015
1 bag of Houttuynia powder, I started at 1/4tsp and worked up to 1 tsp 3x daily, finished in Sept.15'
=2,270 pills, not counting liquids
This isn't counting the herbs I took first round with the ND for candida.
Other Misc. from the ND
Nutriwest-
1 bottle L-Glutamine
2 bottles methyl renew
2 bottles Total Cort
4 bottles DSF herbal
=630 pills
Metabolic Maintenance-
3 bottles Melatonin 9mg at night
3 bottles of L-Theanine
= 780
NOW-
2 bottles L-Ornithine 6 pills daily
1 bottle L-Theanine
2 bottles L-Arginine/Ornithine combo, 6 pills daily, 1 bottle 2014, 1 2015
=860 pills
Wellbrain-
2 bottles Adrestore
2 bottles Dopalift
=480 pills
1 bottle of Immuno gG from biotics research(idk when I took this, it was 2012)
2 bottles Sleep Deep from Dancing Willows, 2014
1 bottle Adrena Calm by Apex Energetics
= 100 pills
Other Misc.
4 bottles of Nystatin pills, 2 pills 2x per day
2-3 bottles Argentyn 23, 1 tsp 5x, 2014
Odorless garlic, 1,000 mg, 2014
4-5 Bottles Doxycycline, 4 liquid 1 pills, 100mg 2 times daily
= 580 pills
Homeopathics
4 bottles Ledum Palustre 30C. 5 pills 3x daily
1 bottle Boiron Silicea 30C
1 bottle Arnica Montana 30C
1 Bottle Calc.Phos. 6x
1 bottle Ruta Graveolens
1 bottle Calc.Phos 30X
2 bottles Mediral Rocky Mountain Spotted fever
1 bottle Physica Relax Milieu
=880 pills
This comes to a total of 9,160 pills!!! Except for 3 bottles(Artemisia, 5MTHF, and Dopalift), I didn't count anything I am taking currently. I didn't even count the liquids which includes the doxy and cryptolepis.
Almost 10,000 pills and I am still sick! This is just wrong. Most of these were in the last 1.5 years. What the heck.
I know some things aren't even included, like Dr.L had me take 3 rounds of mebendazole, 2 weeks each, and 2 rounds biltricide. IV drugs aren't counted. Essential oils weren't counted. And a few other miscellaneous things weren't counted. All of these have also been significant in my treatments.
Looking back, only a few of these were helpful. The cryptolepis tincture, DMSA, Ledum, and IV drugs made anything lasting. Houttuynia was also helpful, it was definitely killing something, I started at 1/4 tsp once a day and it made me feel horrible. I felt like I was going crazy. I would get this spacey feeling, I would become depressed at night, and I couldn't focus. It was one of the worst herxes I have ever had. The sad part is, idk if it gave me any lasting effects. It is traditionally used for Bartonella, which I have never been positive for. I decided to try it to see if bart would start showing up positive at the ND. Babesia never showed up until I started taking cryptolepis, I started taking it and I started testing positive on the bio machine. I thought the houttuynia would do the same for bart if I have it.
The ND has tried to push several of these products on me, especially several of the vitamins and Nutriwest. They are fine products, but they aren't what I need. What I need is to strengthen my body and get my body to kill the bacteria.
The probiotics definitely helped my stomach and candida. Before I tried the modified GAPS diet I had extremely high serotonin, which is made in the gut. After the diet and probiotics, its now too low actually. All of my neurotransmitters are low now. I will be making a post about this in the future. I just have to figure out....where did I put those test results...
In my next post I am going to highlight my current protocol and possible changes.
I wanted to right more...but it took about two hours to type all of this out.
I.am.toast.
Most of the bottles I saved are herbs/supplements, but I have a few prescriptions like nystatin and doxycycline. Here it goes, its long...
For chelation-
3 bottles of Total Chelate by nutriwest, Started March 2015, 1 pill 3x daily, worked up to 2 pills 2x daily
2 bottles of DMSA Synergy from GS nutrients, 100mg 1 pill once daily, 3 days on 11 off(Doctors protocol)
2 bottles of King Chlorella from Nutricology, 10 pills spread throughout the day
2 bottles of DMSA from living supplements, followed the Cutler protocol, first bottle was 12.5mg, 1 pill every 4 hours, 3 days on, 4 off. I started this June 12, 2015, finished midnight September 5, 2015
A total of 560 pills
Probiotics-
Culturelle while I was taking Doxy, 1-2 daily, 180 pills
3 bottles of Body Biotics SBO's, I started at 1 two times a day, ended with 2-3 twice a day, started early 2015, finished May 24
Bowtrol Probiotics, 1 bottles, 2 daily, September 2015
2 Bottles Innate Flora 20-14, 2 per day(IIRC)
1 bottle NOW Probiotic-10,1 3x daily
1 bottle Biotics research S.Boulardii 2 daily
1 bottle Colon Plus also biotics 1tsp daily
=710 pills, not counting powder
I know a few of these are missing, I took more culturelle, another probiotic from Natures Sunshine, and at least 1 other. Plus I consume goat kefir and yogurt often(not pasteurized), but those don't count here
Vitamins-
Vitamin K2 from NOW, 4 bottles(from memory, only saved two), 600mcg daily, started early 2015, finished in June.
B-Complex, 1 daily, Metabolic Maintenance 1 Bottle, Started around August 2015, ended October 2015
5-MTHF Metabolic Maintenance, 1 bottle, 1 pill a day. Started with B-Complex, 2 bottles
Active B12 Folate, Prothera 1 pill a day, 3 bottles, started with Doxycycline
2 Bottles of Esther C, doses varied the ND had me doing 10g at one point, end of 2014/beginning of 2015
Active MTHF Complementary Prescriptions, 3 bottles, 1 pill a day.
1 bottle of Liposomal vitamin C, 3 pills a day, started in Oct.2015
1 bottle of CoQ10 from Metabolic Maintenance, 1 pill a day, Started with B-Comp.
2 bottles of Lithium Orotate. 1 bottle from Swanson and 1 from Advanced Research, 1 5mg pill a day, started after 1st hair test.
Custom Multivitamin Powder from Metabolic Maintenance, 1.5 tsp per day, 1 bottle, Started end of January 2015
3 bottles of NOW vitamin D-3, 10,000 IU per day, Started with K2
Calm Magnesium powder, 2 tsp per day, started with doxy, I only saved 2 bottles but I have continuously taken it since Aug.2013. I am going to estimate 6 bottles.
1 bottle of Green pastures Blue Ice Cod liver/butter oil, 8 per day, same as K2
There is definitely more, this is just what I coudld remember plus what I saved.
=2,350 pills not counting magnesium and vitamin powder!
Herbs(another big category!)
Grapefruit seed extract, nutribiotics, 3 per day(IIRC), 2 bottles
1 bottle of Swanson Grapefruit seed extract liquid, both of these were spring 2015
4 bottles of Swanson Milk thistle, 2 pills 3x daily, Started June 5, stopped end of Oct 2015
3 bottles of NOW Eleuthero capsules, 3 pills 3x daily, same as grapefruit seed extract
13 bottles of Swanson Andrographis Paniculata, 3 pills 3x daily, I started this early 2015
1 bottle of NOW Andrographis, same dose
2 bottles of Natures Sunshine Black Walnut, bottle one Aug., b.2 October 2015
2 bottles Artemisia Combinations, started 8/20 ended 9/5, 2015 B. 2 same as b2 black walnut
3 bottles of NOW Cats Claw, 3 pills 3 times a day, same as andrographis
2 bottles POA Phytolens, 2 pills 2x daily, 2015
2 bottles NOW black walnut/wormwood complex tincture, Feb. 2014
10bottles cryptolepis tincture from Montana Farmacy, first dose 15 drops, ended at 1/2 tsp 3x daily, started May , ended August. 2015
3 bottles Alchornea Cordifolia, 1/4 tsp, June-July 2015
1 bottles Sida Acuta 1/4 tsp, August-Sept.1
1 bottle Houttuynia tincture, Montana Farmacy, 1/4 tsp, June-July 2015
1 bottle Nutramedix Cumanda, started June 5
1 bottle Nutramedix Quina, started June 5
1 bottle Nutramedix Pinella started May 15
1 bottle Nutramedix Burbur started May 15
3 bottles of Biocidin from Bio Botanical Research, started around December 2014
2 bottles of Humaworm, bottle 1 January 2015, b.2 May 2015
1 bag of Houttuynia powder, I started at 1/4tsp and worked up to 1 tsp 3x daily, finished in Sept.15'
=2,270 pills, not counting liquids
This isn't counting the herbs I took first round with the ND for candida.
Other Misc. from the ND
Nutriwest-
1 bottle L-Glutamine
2 bottles methyl renew
2 bottles Total Cort
4 bottles DSF herbal
=630 pills
Metabolic Maintenance-
3 bottles Melatonin 9mg at night
3 bottles of L-Theanine
= 780
NOW-
2 bottles L-Ornithine 6 pills daily
1 bottle L-Theanine
2 bottles L-Arginine/Ornithine combo, 6 pills daily, 1 bottle 2014, 1 2015
=860 pills
Wellbrain-
2 bottles Adrestore
2 bottles Dopalift
=480 pills
1 bottle of Immuno gG from biotics research(idk when I took this, it was 2012)
2 bottles Sleep Deep from Dancing Willows, 2014
1 bottle Adrena Calm by Apex Energetics
= 100 pills
Other Misc.
4 bottles of Nystatin pills, 2 pills 2x per day
2-3 bottles Argentyn 23, 1 tsp 5x, 2014
Odorless garlic, 1,000 mg, 2014
4-5 Bottles Doxycycline, 4 liquid 1 pills, 100mg 2 times daily
= 580 pills
Homeopathics
4 bottles Ledum Palustre 30C. 5 pills 3x daily
1 bottle Boiron Silicea 30C
1 bottle Arnica Montana 30C
1 Bottle Calc.Phos. 6x
1 bottle Ruta Graveolens
1 bottle Calc.Phos 30X
2 bottles Mediral Rocky Mountain Spotted fever
1 bottle Physica Relax Milieu
=880 pills
This comes to a total of 9,160 pills!!! Except for 3 bottles(Artemisia, 5MTHF, and Dopalift), I didn't count anything I am taking currently. I didn't even count the liquids which includes the doxy and cryptolepis.
Almost 10,000 pills and I am still sick! This is just wrong. Most of these were in the last 1.5 years. What the heck.
I know some things aren't even included, like Dr.L had me take 3 rounds of mebendazole, 2 weeks each, and 2 rounds biltricide. IV drugs aren't counted. Essential oils weren't counted. And a few other miscellaneous things weren't counted. All of these have also been significant in my treatments.
Looking back, only a few of these were helpful. The cryptolepis tincture, DMSA, Ledum, and IV drugs made anything lasting. Houttuynia was also helpful, it was definitely killing something, I started at 1/4 tsp once a day and it made me feel horrible. I felt like I was going crazy. I would get this spacey feeling, I would become depressed at night, and I couldn't focus. It was one of the worst herxes I have ever had. The sad part is, idk if it gave me any lasting effects. It is traditionally used for Bartonella, which I have never been positive for. I decided to try it to see if bart would start showing up positive at the ND. Babesia never showed up until I started taking cryptolepis, I started taking it and I started testing positive on the bio machine. I thought the houttuynia would do the same for bart if I have it.
The ND has tried to push several of these products on me, especially several of the vitamins and Nutriwest. They are fine products, but they aren't what I need. What I need is to strengthen my body and get my body to kill the bacteria.
The probiotics definitely helped my stomach and candida. Before I tried the modified GAPS diet I had extremely high serotonin, which is made in the gut. After the diet and probiotics, its now too low actually. All of my neurotransmitters are low now. I will be making a post about this in the future. I just have to figure out....where did I put those test results...
In my next post I am going to highlight my current protocol and possible changes.
I wanted to right more...but it took about two hours to type all of this out.
I.am.toast.
Tuesday, November 3, 2015
Bab Herx :(
My flesh and my heart may fail: but God is the strength of my heart, and my portion forever.
Psalm 73:26
Well like yesterday, I crashed. I woke up tired and dragged throughout the day.
All day I have felt tired, dizzy, shaky, and had a total loss of concentration.
Its not the same fatigue as usual, its more so flu-like. So my guess, its a herx.
Generally I don't herx often, or for long, so I should be better within a few days. In the mean time, detox and rest. That's all I can do.
Again, like yesterday, I nearly took a nap for about an hour. All I could do was lay down and try to sleep. Not because I wanted to sleep, I didn't have a choice. I didn't feel recharged afterwards, I went to bed because my body said I had too. I felt like if I didn't do this, I wouldn't be able to finish the day.
This only happens on the days I have a lot to do, part of it is stress. Thinking about all I should be doing just knocks me out. I try to avoid it, but when I have a lot to do, and cant, stress happens.
It just is what it is, I make do and keep moving on.
Because I have been feeling more ill than usual lately, I am rethinking my current protocol. That will be the topic of my next post. I am going to highlight my past treatments and what worked, I have saved around 70-80% of my empty pill bottles from the last two years. This makes it easy to remember what all I have taken.
Judging by my symptoms, I will probably look at restarting DMSA, probiotics, and probably something else for lyme. At the moment, I feel like only babesia is covered well.
I did take half of the Dopalift like my ND advised me to do. I didn't feel anything, but being in a herx, that's normal. The real test is, will I STILL be awake at 6:00am, that is the question.
Psalm 73:26
Well like yesterday, I crashed. I woke up tired and dragged throughout the day.
All day I have felt tired, dizzy, shaky, and had a total loss of concentration.
Its not the same fatigue as usual, its more so flu-like. So my guess, its a herx.
Generally I don't herx often, or for long, so I should be better within a few days. In the mean time, detox and rest. That's all I can do.
Again, like yesterday, I nearly took a nap for about an hour. All I could do was lay down and try to sleep. Not because I wanted to sleep, I didn't have a choice. I didn't feel recharged afterwards, I went to bed because my body said I had too. I felt like if I didn't do this, I wouldn't be able to finish the day.
This only happens on the days I have a lot to do, part of it is stress. Thinking about all I should be doing just knocks me out. I try to avoid it, but when I have a lot to do, and cant, stress happens.
It just is what it is, I make do and keep moving on.
Because I have been feeling more ill than usual lately, I am rethinking my current protocol. That will be the topic of my next post. I am going to highlight my past treatments and what worked, I have saved around 70-80% of my empty pill bottles from the last two years. This makes it easy to remember what all I have taken.
Judging by my symptoms, I will probably look at restarting DMSA, probiotics, and probably something else for lyme. At the moment, I feel like only babesia is covered well.
I did take half of the Dopalift like my ND advised me to do. I didn't feel anything, but being in a herx, that's normal. The real test is, will I STILL be awake at 6:00am, that is the question.
Monday, November 2, 2015
Artemisia, Cinchona, and Black Walnut
Hello my friends!
The new supplements for babesia arrived today!
A few posts ago I said I was ordering cinchona bark, artemisa combinations, and black walnut hull. I did this because I have been stuck in a babesia flair, this should help knock it down a peg. Here is some info I found on the herbs-
Cinchona bark is used for malaria treatment in South America. Traditionally ground and made into a tea for usage.
Quinine, which can be derived from cinchona bark, has been used as a traditional drug for malaria in North America. Quinine is no longer used for malaria treatment because of possible side affects.
However, the synthetic versions of drugs are nearly always much less safe than what they were derived from, so the bark should not have these side effects at low dosages.
I am going to drink a cup of tea daily.
Artemisia and its derivatives have been used in Lyme/babesia treatment for a long time. Many of the prominent LLMD's use Artemisia or artemisinin in their treatment protocols. It is also an antimalarial that is effective against babesia. It is typically taken in a capsule, 3 days on, 4 days break. It is said Artemisia builds up in the tissue and should be discontinued to allow it to clear. If it isn't allowed to clear it cannot be utilized by the body, it becomes desensitized. I don't know if its true or not, sounds kinda odd to me.
I am going to take 2 pills, 3x a day, three days on 4 off.
The black walnut is not for babesia (as far as I know), but it is good for killing parasites and yeast. Because Artemisia is also a parasite cleanser, although weaker than black walnut, I wanted to pair the two for a stronger effect. I take this every few months then take a break.
I am going to take 2, 3x a day, 15 days on, 5 off. Taking five days off is supposed to allow the parasite eggs to hatch, then restarting the herb will kill them after they hatch.
Here is the finished product. The bark needed to be ground a little more, but hey, it was my first try!
The new supplements for babesia arrived today!
A few posts ago I said I was ordering cinchona bark, artemisa combinations, and black walnut hull. I did this because I have been stuck in a babesia flair, this should help knock it down a peg. Here is some info I found on the herbs-
Cinchona bark is used for malaria treatment in South America. Traditionally ground and made into a tea for usage.
Quinine, which can be derived from cinchona bark, has been used as a traditional drug for malaria in North America. Quinine is no longer used for malaria treatment because of possible side affects.
However, the synthetic versions of drugs are nearly always much less safe than what they were derived from, so the bark should not have these side effects at low dosages.
I am going to drink a cup of tea daily.
Artemisia and its derivatives have been used in Lyme/babesia treatment for a long time. Many of the prominent LLMD's use Artemisia or artemisinin in their treatment protocols. It is also an antimalarial that is effective against babesia. It is typically taken in a capsule, 3 days on, 4 days break. It is said Artemisia builds up in the tissue and should be discontinued to allow it to clear. If it isn't allowed to clear it cannot be utilized by the body, it becomes desensitized. I don't know if its true or not, sounds kinda odd to me.
I am going to take 2 pills, 3x a day, three days on 4 off.
The black walnut is not for babesia (as far as I know), but it is good for killing parasites and yeast. Because Artemisia is also a parasite cleanser, although weaker than black walnut, I wanted to pair the two for a stronger effect. I take this every few months then take a break.
I am going to take 2, 3x a day, 15 days on, 5 off. Taking five days off is supposed to allow the parasite eggs to hatch, then restarting the herb will kill them after they hatch.
Here are my herbs after unboxing
I made a cup of cinchona tea. I had to grind the bark using the coffee grinder to make it into a powder.
I mixed 1tsp of the powder in a cup of boiling water and let it sit for a while.
Its not bad, kinda bitter. It has a unique flavor, with a texture like a raw sweet potato(know what I mean?) I can definitely take this without much difficulty daily. Its weird, but not bad.
I have already taken my first dose of everything. I became very fatigued late this afternoon, almost took a nap because of it. Wonder if it was a short herx? After I finished everything I had to do for the day I sat down, about 6:00pm. I almost fell asleep! I didn't get up for almost two hours. I am still tired, but on the days this happens...I know I wont sleep during the night. I can only pick one time to rest, today my body picked the late afternoon. I never know what to expect with this disease, its like a roller coaster.
One last thing, I emailed the ND today, asking him what I should do about my Dopalift situation.
He told me to half the capsule and try again tomorrow.
So tomorrow I am going to take half a Dopalift at 8:00am.
In my last post I said I was going to try taking it at 8am this morning, but my alarm didn't go off. Slept right on through... I didn't think about halving it, I am kinda glad I forgot.
Until next time!
Sunday, October 25, 2015
Babesia Symptoms
Earlier this week I posted about how I have stayed more tired than usual. I am generally tired but I can stay functional...well most of the time.
This past week was different. It was like, I would trade anything for sleep. It was like nothing was worth getting out of bed and using my valuable energy.
Yesterday something occurred to me. I noticed my abdomen was beginning to feel sore, around ribcage. Turns out this is the spleen area. The spleen processes blood cells, which babesia infects. So I think I may be going through a babesia flair...
In the past I have taken Cumanda and Quina from Nutramedix, and the herb cryptolepis.
The Cumanda and Quina seemed to work a little, but they just weren't what I needed. The effects just didn't last for me. That's when I tried the Cryptolepis tincture. It was like a magic bullet for my fatigue! The results were almost miraculous. Within a few hours of the first dose (15 drops) I felt better. I walked the dog for fun and did some other stuff I enjoy doing on good days.
I started at 15 drops 3x daily and quickly moved up to 1/2 tsp 3x, I did this for 5 months.
I stopped taking it in August because I was no longer feeling the affects. I wasn't having the same fatigue I was having before either. I haven't taken any anti-malarials since then...Maybe its time to give it a shot again.
I've never tried red root, I think I will order some of that also and report back!
On another note, I follow this blog- http://victoriawilguess.blogspot.com/ by Victoria Wilguess. She has suffered from Lyme Disease also. Like me she went several years without an answer or any treatments. Another thing that hit close to home was that she was also a teenager when she got sick. This is harder than most people can understand, unless you have been in the situation personally.
True friends to support you and family members to understand you can be scarce. That alone can bring someone down, on top of that she was a teenager. That is a stressful time for everyone at some point. She somehow stayed positive. I believe its because of her faith in God. I know that's what she will tell you.
Victoria has been going through some new treatments lately. Included a stem cell transplant, that she will have to go to Germany for.
Having a chronic illness is hard. There is uncertainty, pain, and a distancing from the reality previously known.
Victoria (and myself) had to grow up, just to learn to cope. This is not easy for kids who were used to running around and playing games. You cant explain to another 12 year old your sitting out of tag because your tired or in pain.
Victoria has been on my mind and in my prayers the past few weeks. It would be great if you could keep her in your prayers, she is going through a lot :)
This past week was different. It was like, I would trade anything for sleep. It was like nothing was worth getting out of bed and using my valuable energy.
Yesterday something occurred to me. I noticed my abdomen was beginning to feel sore, around ribcage. Turns out this is the spleen area. The spleen processes blood cells, which babesia infects. So I think I may be going through a babesia flair...
In the past I have taken Cumanda and Quina from Nutramedix, and the herb cryptolepis.
The Cumanda and Quina seemed to work a little, but they just weren't what I needed. The effects just didn't last for me. That's when I tried the Cryptolepis tincture. It was like a magic bullet for my fatigue! The results were almost miraculous. Within a few hours of the first dose (15 drops) I felt better. I walked the dog for fun and did some other stuff I enjoy doing on good days.
I started at 15 drops 3x daily and quickly moved up to 1/2 tsp 3x, I did this for 5 months.
I stopped taking it in August because I was no longer feeling the affects. I wasn't having the same fatigue I was having before either. I haven't taken any anti-malarials since then...Maybe its time to give it a shot again.
I've never tried red root, I think I will order some of that also and report back!
On another note, I follow this blog- http://victoriawilguess.blogspot.com/ by Victoria Wilguess. She has suffered from Lyme Disease also. Like me she went several years without an answer or any treatments. Another thing that hit close to home was that she was also a teenager when she got sick. This is harder than most people can understand, unless you have been in the situation personally.
True friends to support you and family members to understand you can be scarce. That alone can bring someone down, on top of that she was a teenager. That is a stressful time for everyone at some point. She somehow stayed positive. I believe its because of her faith in God. I know that's what she will tell you.
Victoria has been going through some new treatments lately. Included a stem cell transplant, that she will have to go to Germany for.
Having a chronic illness is hard. There is uncertainty, pain, and a distancing from the reality previously known.
Victoria (and myself) had to grow up, just to learn to cope. This is not easy for kids who were used to running around and playing games. You cant explain to another 12 year old your sitting out of tag because your tired or in pain.
Victoria has been on my mind and in my prayers the past few weeks. It would be great if you could keep her in your prayers, she is going through a lot :)
Wednesday, October 21, 2015
Chronic, Incessant insomnia...Permanent or Temporary?
I have never understood insomnia. I have been researching Lyme disease and most of its symptoms for years, but insomnia puzzles me to no end. The purpose of sleep is to restore the body right? So why wouldn't I need more sleep? I sleep about four hours each night-give or take...Not very restorative to be honest.
According to Dr.Horowitz about 70% of Lyme patients suffer from this chronic insomnia. It remains untouched by common sleep aids such as Ambien, Benadryl, or Restoril, but why? During my research I found Lyme disease isn't the only chronic insomnia causing illness. People with bipolar disorder can also have the same sudden onset of insomnia. Some patients stay so wired they cannot
sleep for days. I have met people who can attest to that.
Lyme and bipolar disorder are both considered chronic illnesses. The definition of chronic is "Marked by long duration or frequent recurrence" according to Merriam-Webster.By this definition,
people with bipolar disorder or Lyme disease are sick for a long period of time(or until death). During this time, the patient is not only accumulating damage from the chronic disease,but also the
chronic symptom...catch 22, isn't it?
Personally I have had some form of insomnia my entire life. As a baby I slept fine, I just took a long time to fall asleep. I would sleep 10 hours,so no one thought anything of it (that's what I was told at least). On the other hand, when I was 6-7 years old I stopped sleeping (no Lyme DX yet), I could be awake until 2:00 am before falling asleep. When I was a young teenager I used this to my advantage. Wide awake at 1:00am was a great time to catch up homework.
Not much has changed since then actually. (lol)An average night is 3:00 am before falling asleep. A bad night,on the other hand,may have absolutely 0 minutes of sleep whatsoever. None. Wide awake straight through the night.
I have tried everything. No dice.
Valerian root tincture, Ambien, Restoril, melatonin, homeopathic sleep remedies, herbal blends of sleep remedies, avoiding electronics and light for hours before bed...the list goes on..
I had my saliva hormone levels tested, high melatonin in the morning, normal in the afternoon, low in the evening, and then low at midnight. Melatonin supplementation seemed like a good idea. It was one of the only supplements to make a minor difference. It just included one side affect, a hangover the next morning. I would sleep late, struggle to wake up, and then feel groggy the whole day. I tried playing around with the dose, again, no help. I quite after that. If my body wanted sleep it could have it, but for some reason that's not what it wants. There is a reason, I just don't know it.
Dr. H recommends supplements to lower high cytokines. Cytokines are a group of inflammatory proteins. The anti-inflammatory diet, which I have followed since my ND recommended it to me years ago, should lower these. In theory...
Dr. Jernigan and Dr. Hulda Clark teach that excess ammonia in the blood stops the brain from sleeping. Both claim a high success rate for curing their insomnia patients. I tried Dr.Clarks method, taking L.Ornithine before bed. The protocol starts with a low dose then builds up over several days to a rather high dose.
It helped me feel more alert during the day. No change at night though :/
I wonder why that is.
I don't really like the idea of being attached to a prescription drug, just to fall asleep a few hours earlier. Especially for an unspecified period of time. After all, I learned to deal with insomnia a long time ago. Anymore, its not big deal to me...just irritating.
What do you guys use to treat your chronic insomnia? Is it worth trying?
Until next time...
According to Dr.Horowitz about 70% of Lyme patients suffer from this chronic insomnia. It remains untouched by common sleep aids such as Ambien, Benadryl, or Restoril, but why? During my research I found Lyme disease isn't the only chronic insomnia causing illness. People with bipolar disorder can also have the same sudden onset of insomnia. Some patients stay so wired they cannot
sleep for days. I have met people who can attest to that.
Lyme and bipolar disorder are both considered chronic illnesses. The definition of chronic is "Marked by long duration or frequent recurrence" according to Merriam-Webster.By this definition,
people with bipolar disorder or Lyme disease are sick for a long period of time(or until death). During this time, the patient is not only accumulating damage from the chronic disease,but also the
chronic symptom...catch 22, isn't it?
Personally I have had some form of insomnia my entire life. As a baby I slept fine, I just took a long time to fall asleep. I would sleep 10 hours,so no one thought anything of it (that's what I was told at least). On the other hand, when I was 6-7 years old I stopped sleeping (no Lyme DX yet), I could be awake until 2:00 am before falling asleep. When I was a young teenager I used this to my advantage. Wide awake at 1:00am was a great time to catch up homework.
Not much has changed since then actually. (lol)An average night is 3:00 am before falling asleep. A bad night,on the other hand,may have absolutely 0 minutes of sleep whatsoever. None. Wide awake straight through the night.
I have tried everything. No dice.
Valerian root tincture, Ambien, Restoril, melatonin, homeopathic sleep remedies, herbal blends of sleep remedies, avoiding electronics and light for hours before bed...the list goes on..
I had my saliva hormone levels tested, high melatonin in the morning, normal in the afternoon, low in the evening, and then low at midnight. Melatonin supplementation seemed like a good idea. It was one of the only supplements to make a minor difference. It just included one side affect, a hangover the next morning. I would sleep late, struggle to wake up, and then feel groggy the whole day. I tried playing around with the dose, again, no help. I quite after that. If my body wanted sleep it could have it, but for some reason that's not what it wants. There is a reason, I just don't know it.
Dr. H recommends supplements to lower high cytokines. Cytokines are a group of inflammatory proteins. The anti-inflammatory diet, which I have followed since my ND recommended it to me years ago, should lower these. In theory...
Dr. Jernigan and Dr. Hulda Clark teach that excess ammonia in the blood stops the brain from sleeping. Both claim a high success rate for curing their insomnia patients. I tried Dr.Clarks method, taking L.Ornithine before bed. The protocol starts with a low dose then builds up over several days to a rather high dose.
It helped me feel more alert during the day. No change at night though :/
I wonder why that is.
I don't really like the idea of being attached to a prescription drug, just to fall asleep a few hours earlier. Especially for an unspecified period of time. After all, I learned to deal with insomnia a long time ago. Anymore, its not big deal to me...just irritating.
What do you guys use to treat your chronic insomnia? Is it worth trying?
Until next time...
Tuesday, October 20, 2015
My Story, The Beginning
The story of my future started when I was 12 years old. I was at camp having a good time just like any other kid. During the night in the middle of the week I was bitten by a tick. I woke up about 6:00 AM to the feeling of it hanging onto my leg. I stood up and checked it out under the light, noted the size, pulled it off, and flushed it down the toilet. It wasn't the typical lone star tick I normally could find in Georgia, it was black and rather large, but not engorged.
I had gone to bed that night about midnight, after a shower. No tick whatsoever So at most this tick was attached for six hours. Ticks, according to the IDSA have to be attached a minimum of 24-36 hours to transmit an infection. That's also what the other Boy Scouts told me...
No rash, no blood, no symptoms...couldn't be a big deal right? Wrong...oh so wrong.
A few months later I had a traumatic injury and required surgery. I felt the worst I had ever felt in my life after a minor, 15 minute surgery. The surgery wasn't expected to last long, they sedated me just enough for half an hour. Surgery started around 7:00 AM, I counted back from 100, made it to 89, then I was out. I was totally out cold until 4:30 PM. I slept about 9.5 hours after about half a nights sleep. I have been a chronic insomniac since I was in my mid single digits. So to be totally out of it, for so long, was very out of the ordinary for me.
Fast forward a few months after surgery, injury is fully recovered. I still had this unshakable, intolerable fatigue. I had been told all of these stories about how anesthesia can make you feel terrible...but still progressing not diminishing after six months? *New problem, not anesthesia* I had constant fatigue and insomnia, joint/muscle pain, and dizziness...turns out, this was only the beginning of a long list of symptoms.
I decided it was time to do something. So I visited my local naturopath. Long story short, they found candida overgrowth and excess inflammation. These were both caused by the injury, and seemed to fit the profile.
I followed the anti-inflammatory and anti-candida diet for several months. During this time they also had me taking a regimen of anti-inflammatory and yeast killing herbs. My symptoms did improve and pain became tolerable. Several months and a plateau later, I moved on to the next doctor.
During my time with the naturopath I learned to start doing my own research. My list of symptoms matched Lyme. Migrating joint pain, just one of my symptoms, is extremely specific to Lyme. This symptom should have made any doctor suspicious of Lyme disease. When it came to visiting doctor #2, I was let down when no Lyme or Lyme test was mentioned. He did however test my blood for Mono/E. Barr, thyroid hormone levels and diabetes. All tests returned normal. I didn't bother going back.
A few months later a kind friend referred me to doctor #3, whom I first visited August 2013. I loved this doctor! Doctor #3, whom ill call Dr.L, was extremely thorough. This doctor asked me every question imaginable and listened to what I had to say! A huge change to the previous doctors who had diagnosed me, probably, before I ever set foot in their office.
Ten vials of blood later-Bingo! Positive titers for Rocky Mountain Spotted Fever. Or as I called it, the answer I had waited so long for. It sure took long enough!!
The Lyme test was negative, not all that shocking considering their poor track record.
Dr. L had me on a regimen of liquid doxy and IV rocephin, IV C, and IV mag/b vitamins. I would take the antibiotics for a month on, month break, retest and restart ABX. So basically I took ABX every other month. I would only do the IV drugs whenever I went into the office.
I followed that protocol for about a year until it just stopped working. In the beginning (first two months or so) I did feel better. I never felt normal, just improved.
Starting around the 4th round, doxy just made me worse, with no improvement afterwards.
The last round of abx I took was 28 days of ceftin(ceftriaxone). After that, which did nothing, I just quite with antibiotics. Have not taken any since.
The IV drugs/vitamins did make a noticeable difference.
The IV's consisted of Rocephin, Vitamin C 10,000mg, sodium bicarb, magnesium/b vitamin combo, and sometimes fluconazole if yeast was flaring. I liked the rocephin and Vitamin C. They made the most noticeable (and lasting!) difference. After a year and a half I quit going to Dr.L, I had gone through all of their resources. Still sick...
I started going back to the ND in Sept. 2014. I figured now that I had a DX, I could try out their treatment options. I prefer natural methods to synthetic chemicals anyway.
The ND, who uses biofeedback as a primary testing resource, found a reaction to RMSF, lyme, babesia, EBV, and parasites. Dr.L had had me do parasite cleanses in the past using both ABX and herbs, so this wasn't a new subject to me. I had found humaworm online and chosen that as my parasite killer of choice. The ND, on top of parasite cleansing, had me use their protocol for the lyme and virus. Their protocol consisted of colloidal silver, Biocidin and TOA free cats claw, along with adrenal support.
It helped, certainly stopped progression if anything.
This brings us to the present.
Since starting with the ND I have been treating myself a good bit. I have used andrographis, eleuthero, and cryptolepis per the Healing Lyme protocol. I have also used grapefruit seed extract, houttyunia powder, l ornithine, lithium, b complex, chlorella, DMSA, and several other things. (highlighted again here)
My current symptoms- roughly worst to least-
Insomnia (ambien and restoril did nothing, its anywhere 2-6 am before falling asleep)
fatigue
Brain fog
muscle twitching
muscle pain
tremors
sweats
heat sensitivity
dizziness
muscle/limb jerks
skin burning
tinnitus (CoQ10 has helped somewhat)
dizziness upon standing
chest tightening briefly making it hard to breath
Currently, 10/21/15, I am taking a B complex, Ledum Pal. 30C, Calc. Phos. 30C, ALA, Arnica Montana 30C, lipo vitamin C, milk thistle, magnesium, and iodine.
This, has only been the beginning of my fight against lyme disease and co-infections....
Until next time, God Bless and goodnight
I had gone to bed that night about midnight, after a shower. No tick whatsoever So at most this tick was attached for six hours. Ticks, according to the IDSA have to be attached a minimum of 24-36 hours to transmit an infection. That's also what the other Boy Scouts told me...
No rash, no blood, no symptoms...couldn't be a big deal right? Wrong...oh so wrong.
A few months later I had a traumatic injury and required surgery. I felt the worst I had ever felt in my life after a minor, 15 minute surgery. The surgery wasn't expected to last long, they sedated me just enough for half an hour. Surgery started around 7:00 AM, I counted back from 100, made it to 89, then I was out. I was totally out cold until 4:30 PM. I slept about 9.5 hours after about half a nights sleep. I have been a chronic insomniac since I was in my mid single digits. So to be totally out of it, for so long, was very out of the ordinary for me.
Fast forward a few months after surgery, injury is fully recovered. I still had this unshakable, intolerable fatigue. I had been told all of these stories about how anesthesia can make you feel terrible...but still progressing not diminishing after six months? *New problem, not anesthesia* I had constant fatigue and insomnia, joint/muscle pain, and dizziness...turns out, this was only the beginning of a long list of symptoms.
I decided it was time to do something. So I visited my local naturopath. Long story short, they found candida overgrowth and excess inflammation. These were both caused by the injury, and seemed to fit the profile.
I followed the anti-inflammatory and anti-candida diet for several months. During this time they also had me taking a regimen of anti-inflammatory and yeast killing herbs. My symptoms did improve and pain became tolerable. Several months and a plateau later, I moved on to the next doctor.
During my time with the naturopath I learned to start doing my own research. My list of symptoms matched Lyme. Migrating joint pain, just one of my symptoms, is extremely specific to Lyme. This symptom should have made any doctor suspicious of Lyme disease. When it came to visiting doctor #2, I was let down when no Lyme or Lyme test was mentioned. He did however test my blood for Mono/E. Barr, thyroid hormone levels and diabetes. All tests returned normal. I didn't bother going back.
A few months later a kind friend referred me to doctor #3, whom I first visited August 2013. I loved this doctor! Doctor #3, whom ill call Dr.L, was extremely thorough. This doctor asked me every question imaginable and listened to what I had to say! A huge change to the previous doctors who had diagnosed me, probably, before I ever set foot in their office.
Ten vials of blood later-Bingo! Positive titers for Rocky Mountain Spotted Fever. Or as I called it, the answer I had waited so long for. It sure took long enough!!
The Lyme test was negative, not all that shocking considering their poor track record.
Dr. L had me on a regimen of liquid doxy and IV rocephin, IV C, and IV mag/b vitamins. I would take the antibiotics for a month on, month break, retest and restart ABX. So basically I took ABX every other month. I would only do the IV drugs whenever I went into the office.
I followed that protocol for about a year until it just stopped working. In the beginning (first two months or so) I did feel better. I never felt normal, just improved.
Starting around the 4th round, doxy just made me worse, with no improvement afterwards.
The last round of abx I took was 28 days of ceftin(ceftriaxone). After that, which did nothing, I just quite with antibiotics. Have not taken any since.
The IV drugs/vitamins did make a noticeable difference.
The IV's consisted of Rocephin, Vitamin C 10,000mg, sodium bicarb, magnesium/b vitamin combo, and sometimes fluconazole if yeast was flaring. I liked the rocephin and Vitamin C. They made the most noticeable (and lasting!) difference. After a year and a half I quit going to Dr.L, I had gone through all of their resources. Still sick...
I started going back to the ND in Sept. 2014. I figured now that I had a DX, I could try out their treatment options. I prefer natural methods to synthetic chemicals anyway.
The ND, who uses biofeedback as a primary testing resource, found a reaction to RMSF, lyme, babesia, EBV, and parasites. Dr.L had had me do parasite cleanses in the past using both ABX and herbs, so this wasn't a new subject to me. I had found humaworm online and chosen that as my parasite killer of choice. The ND, on top of parasite cleansing, had me use their protocol for the lyme and virus. Their protocol consisted of colloidal silver, Biocidin and TOA free cats claw, along with adrenal support.
It helped, certainly stopped progression if anything.
This brings us to the present.
Since starting with the ND I have been treating myself a good bit. I have used andrographis, eleuthero, and cryptolepis per the Healing Lyme protocol. I have also used grapefruit seed extract, houttyunia powder, l ornithine, lithium, b complex, chlorella, DMSA, and several other things. (highlighted again here)
My current symptoms- roughly worst to least-
Insomnia (ambien and restoril did nothing, its anywhere 2-6 am before falling asleep)
fatigue
Brain fog
muscle twitching
muscle pain
tremors
sweats
heat sensitivity
dizziness
muscle/limb jerks
skin burning
tinnitus (CoQ10 has helped somewhat)
dizziness upon standing
chest tightening briefly making it hard to breath
Currently, 10/21/15, I am taking a B complex, Ledum Pal. 30C, Calc. Phos. 30C, ALA, Arnica Montana 30C, lipo vitamin C, milk thistle, magnesium, and iodine.
This, has only been the beginning of my fight against lyme disease and co-infections....
Until next time, God Bless and goodnight
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