What's taking you so long to to get better? Isn't there a CURE for Lyme Disease?
Those of us with Chronic Lyme get asked questions like this all the time. In this blog post I share my thoughts on why treatment is a long process and why we there isn't a magic pill that will cure us.
When we hear the word cure we tend to think about illnesses where we get easily diagnosed, the course of action is known and the results are predictable, like if someone gets pink eye, or pneumonia, or ringworm or some other such thing. In those cases there is a clear cut diagnosis, treatment plan and a high success rate therefore we think of them as having a "cure". Because each case of Lyme Disease is so different, it's still be researched, is only barely understood and it is so very complex, there is not one treatment plan that works almost all of the time for almost all of the people, therefore no "cure".
Most of us with Lyme believe that after it has become chronic it is impossible to get rid of every single borellia bacterium in the body, but that's not required in order to be better and get your life back. What we are seeking, in most cases, is a lessening of infection and a strengthening of our immune system until we reach a point where our body can handle and take care of any small amount of infection that may have been hiding out. This is one more reason the Lyme community will say there is no "cure".
There is however every reason to believe you can and will get your health and your life back. I know two people who have rid themselves of the lyme and co. One of them is very high functioning and you would never know she was sick if you met her now. The other is still working on other heath issues that she likely would have had even without the Lyme.
Lyme has become an umbrella term and we must deal with the entire puzzle in order to achieve total wellness.
When someone has chronic Lyme what they really have is a random
assortment of tick-born infections, opportunistic infections like yeast,
parasites, and MarCons, as well as heavy metals, high levels of toxins,
vitamin and mineral deficiencies, and a laundry list of conditions, like adrenal fatigue, that
have resulted from every single bodily system being affected by this
illness. The complexity of this disease, the unique ways it presents in each person, are part of the reason treatment takes so long why there isn't
a cure.
I am getting myself very close to being able to say that I no longer harbor any tick infections, but I am still dealing with the havoc that it has caused in my body. I am VERY toxic and still fighting off several other infections that were opportunistic after the lyme weakened my immune system. My test results are getting better and my good days are improving, but there is still a lot of work to be done and I often feel similar to how I did when I had high levels of tick infections. I will likely always need to maintain a restricted diet, take a few supplements, and treat my body extra well in order to be sure that I never end up here again. But for now, I can say that there are days where I think I can see the light at the end of the tunnel. Keep fighting the good fight everyone.
Questions, comments, and words of encouragement are always welcome.
Sunday, September 16, 2012
Sunday, September 9, 2012
On the Verge Of a Big Breakthrough
About two weeks ago I went to visit my naturopath to get a full biofeedback work up. I tend to see her about once a year so she can use her nifty computer based machine to test me and help me understand what is currently happening in my body. I got some really good/helpful/interesting information from her and I wan to share it with you all. I'm excited about what it means for my health and I hope that my sharing can help one of you reading this to find the missing puzzle pieces in your health.
Warning: This is a LONG blog post, full of medical info.
The first piece of information I got was really exciting! She said she couldn't find any tick-born infections (TBIs)!!! I was really excited about that, but also a tad suspicious because I had just been muscle tested a week before and was still coming up slightly positive for Bartonella and had a substantial case of Babesia. I was really hoping her test would confirm my LLMD's (Lyme Literate Medical Doctor) muscle testing which has been saying that I don't have borellia aka Lyme and it did! The naturopath said that my test results were fluctuating as she went further and tested me for molds. I learned that mold illness can mimic Lyme and even effect the test results. She felt like she was missing something and wanted to be really really sure when she told me that she couldn't find any more TBIs so she kept checking and tweeking things in her biofeedback system until we finally figured it out.
According to her, I no longer have Bartonella at all! That's amazing since I'm not directly treating for it right now (unless there is something in the Bab-1 formula that also works against bart). She also said that I don't have any adult organisms for Babesia or Lyme, just eggs waiting to hatch. This is really exciting news because I am already treating for babs and when the eggs hatch they I will already have the meds in my system to kill them. I'm just one life cycle away form getting rid of babs :-) The bonus is that the life cycle is pretty short and she said it should happen in the next few weeks. I think it's happening right now because I'm feeling quite toxic and a bit herxy. The Lyme buggers have a longer less predictable life cycle and so I'm just hoping that they won't hatch until after I get something to kill them into my system. I'm just afraid t odo that right now because I'm so sensitive and I keep twitching every time I add a killing agent to my protocol. I'll see my LLMD later this week and confirm these findings with him and get something added to my protocol to make sure we kill the baby spirochetes as soon as they hatch. I can't believe that I'm just one life cycle away from really being rid of these fracking infections. I guess this explains why my LLMD hasn't been able to find the Lyme but wasn't ready to say I'm cured quite yet.
I couldn't help but wonder if I'm making such great progress why do I still have so many symptoms and what the heck is up with the neurological dysfunction and involuntary movements or twitching? It seems like if I'm almost all better I shouldn't have such dramatic symptoms. That's the thing about Chronic Lyme, it weakens your immune system and causes damage through the body resulting in a long list of symptoms and other issues some of which are worse them the Lyme itself. That's why when Lyme is left untreated for years it becomes really hard to treat and people get so sick for so long. Lyme Disease really has become an umbrella term for a whole bunch of conditions that tend to come along with the Lyme bacteria.
So back to my test results... She dug around and found that I have some hormone imbalances. My Thyroid is a little low ( not surprising as several people in my family take thyroid meds). my adrenals are low (I knew that), my progesterone level is low and I think I might be a bit estrogen dominate because of that ( maybe that's part of why I can get my skin to clear up?) and there are some imbalances with epinephrine and hydrocortisone. None of this surprised me at all, I have even been told some of it before. It makes sense with my family history, it fits with being chronically fatigued and easily exhausted, and I know that Lyme tends to attack or affect the HPA axis which controls the Hypothalamus, Pituitary, and Adrenal glands.
In addition, I am still fighting some other infections and exposures like heavy metals, an intestinal parasite, the MarCons staph infection in my sinuses, candida, and I've got a mild case of leaky gut. None of this surprised me either. I knew about all of these infections and have done a lot of work on each of them at some point. It is useful to know that pretty much everything is hanging around a really low levels. Now I know what I still need to treat and I suspect that if I could get my immune system to work it might be able to take care of some of these bitty bits of infection.
I mentioned mold earlier, well it turns out I'm being exposed to water damage molds, several species, and it's a toxic burden my body it having a hard time handling. I have got to figure out where in this new house there might be mold and talk to the landlord about getting an inspection or something. This is a potential nightmare I'm just not ready to face quite yet. I'll see what happens at my net apt and go from there. Hopefully we can do something to reduce the exposure and help my body to deal with it without having to get into any rental property issues. I thought we were done with mold when we moved into a warm, dry, newer home. ARG!
Now here's the really interesting part of the assessment results. We figured out that I have some vitamin and mineral deficiencies and part of the reason is because I have a genetic mutation that reduces my body's ability to convert folate into a useable form. It's called MTHFR. This is new information for me. I had been told before that my x-rays showed a mild cause of spinabifida and that it meant I inherited an issue with folic acid, but what I didn't know is that the folate has a relationship with iron, B vits, zinc, magnesium, and glutathione and that these things are key pieces to a properly functioning detox pathway. AH HA! Finally, it is all starting to make sense. I think that most of my symptoms, especially the neurological ones are simply an issue of having a broken detox pathway because of this genetic folate issue. Check out the list of conditions this mutation can cause. Read about how blockages in the detox pathway can effect the body.
There is a lot of interesting science behind all of this and I'll do additional blog posts on it later, but for now, to keep it simple, I'll just say that I think this is the missing piece to the puzzle. I think this explains why I am one of the lucky people who is more susceptible to getting a chronic illness, why it is taking forever to treat it, why I feel sooo bad even after making so much progress, and why I am so sensitive to so very many things. It could also explain things like exercise intolerance, seasonal and food allergies, digestion issues, sleep disturbances, weak teeth, and might possibly be a major player in every single symptom I still experience. In fact I think that this is one important factor in why each person's journey with Lyme is so different, we all have different genes that make us more or less likely to manifest certain kinds of symptoms.
This may sound like a horrible thing, OMG you've got a genetic defect! But really I'm so glad I know. It's not something that is going to kill me, it's really pretty easy to treat with a knowledgeable DR.'s help, it is probably linked to most of my symptoms and therefor I should feel a ton better once I start treatment. I'm also really glad to have found this out now so that I can take really good care of myself if we ever try to get pregnant. In fact I'm thrilled to find this out. I have this really strong feeling that getting this under control is going to create a lot of relief for my body, things will start to repair themselves and fall into place, I should start detoxing properly and get rid of the toxins and metals, and my immune system should bounce back and start taking care of the last few little infections. I really think that I'm on the verge of a BIG breakthrough and I'm excited because I think this is going to be the thing that brings me back to being ME.
I know that was a lot, thank you for taking the time to read it all. I so very much appreciate those of you who stick with me through the nitty gritty of this illness. I'll be seeing my LLMD on Wednesday night and I'm going to share this info with him, ask for his input, see what the muscle testing says and ask for some lab work to confirm it. Although I've simplified it to simply a folic acid problem, it is actually a complex chemistry equation and I want to make sure that we use this opportunity to really get a hold of all the little pieces and put me back together once and for all.
If you have any suggestions on tests I should request or questions I should ask my Dr. please let me know. I want to go to my apt as prepared as possible. As always, questions, comments, and support are always welcome. Thanks for being beside me on this journey. HUGS!
Warning: This is a LONG blog post, full of medical info.
The first piece of information I got was really exciting! She said she couldn't find any tick-born infections (TBIs)!!! I was really excited about that, but also a tad suspicious because I had just been muscle tested a week before and was still coming up slightly positive for Bartonella and had a substantial case of Babesia. I was really hoping her test would confirm my LLMD's (Lyme Literate Medical Doctor) muscle testing which has been saying that I don't have borellia aka Lyme and it did! The naturopath said that my test results were fluctuating as she went further and tested me for molds. I learned that mold illness can mimic Lyme and even effect the test results. She felt like she was missing something and wanted to be really really sure when she told me that she couldn't find any more TBIs so she kept checking and tweeking things in her biofeedback system until we finally figured it out.
According to her, I no longer have Bartonella at all! That's amazing since I'm not directly treating for it right now (unless there is something in the Bab-1 formula that also works against bart). She also said that I don't have any adult organisms for Babesia or Lyme, just eggs waiting to hatch. This is really exciting news because I am already treating for babs and when the eggs hatch they I will already have the meds in my system to kill them. I'm just one life cycle away form getting rid of babs :-) The bonus is that the life cycle is pretty short and she said it should happen in the next few weeks. I think it's happening right now because I'm feeling quite toxic and a bit herxy. The Lyme buggers have a longer less predictable life cycle and so I'm just hoping that they won't hatch until after I get something to kill them into my system. I'm just afraid t odo that right now because I'm so sensitive and I keep twitching every time I add a killing agent to my protocol. I'll see my LLMD later this week and confirm these findings with him and get something added to my protocol to make sure we kill the baby spirochetes as soon as they hatch. I can't believe that I'm just one life cycle away from really being rid of these fracking infections. I guess this explains why my LLMD hasn't been able to find the Lyme but wasn't ready to say I'm cured quite yet.
I couldn't help but wonder if I'm making such great progress why do I still have so many symptoms and what the heck is up with the neurological dysfunction and involuntary movements or twitching? It seems like if I'm almost all better I shouldn't have such dramatic symptoms. That's the thing about Chronic Lyme, it weakens your immune system and causes damage through the body resulting in a long list of symptoms and other issues some of which are worse them the Lyme itself. That's why when Lyme is left untreated for years it becomes really hard to treat and people get so sick for so long. Lyme Disease really has become an umbrella term for a whole bunch of conditions that tend to come along with the Lyme bacteria.
So back to my test results... She dug around and found that I have some hormone imbalances. My Thyroid is a little low ( not surprising as several people in my family take thyroid meds). my adrenals are low (I knew that), my progesterone level is low and I think I might be a bit estrogen dominate because of that ( maybe that's part of why I can get my skin to clear up?) and there are some imbalances with epinephrine and hydrocortisone. None of this surprised me at all, I have even been told some of it before. It makes sense with my family history, it fits with being chronically fatigued and easily exhausted, and I know that Lyme tends to attack or affect the HPA axis which controls the Hypothalamus, Pituitary, and Adrenal glands.
In addition, I am still fighting some other infections and exposures like heavy metals, an intestinal parasite, the MarCons staph infection in my sinuses, candida, and I've got a mild case of leaky gut. None of this surprised me either. I knew about all of these infections and have done a lot of work on each of them at some point. It is useful to know that pretty much everything is hanging around a really low levels. Now I know what I still need to treat and I suspect that if I could get my immune system to work it might be able to take care of some of these bitty bits of infection.
I mentioned mold earlier, well it turns out I'm being exposed to water damage molds, several species, and it's a toxic burden my body it having a hard time handling. I have got to figure out where in this new house there might be mold and talk to the landlord about getting an inspection or something. This is a potential nightmare I'm just not ready to face quite yet. I'll see what happens at my net apt and go from there. Hopefully we can do something to reduce the exposure and help my body to deal with it without having to get into any rental property issues. I thought we were done with mold when we moved into a warm, dry, newer home. ARG!
Now here's the really interesting part of the assessment results. We figured out that I have some vitamin and mineral deficiencies and part of the reason is because I have a genetic mutation that reduces my body's ability to convert folate into a useable form. It's called MTHFR. This is new information for me. I had been told before that my x-rays showed a mild cause of spinabifida and that it meant I inherited an issue with folic acid, but what I didn't know is that the folate has a relationship with iron, B vits, zinc, magnesium, and glutathione and that these things are key pieces to a properly functioning detox pathway. AH HA! Finally, it is all starting to make sense. I think that most of my symptoms, especially the neurological ones are simply an issue of having a broken detox pathway because of this genetic folate issue. Check out the list of conditions this mutation can cause. Read about how blockages in the detox pathway can effect the body.
There is a lot of interesting science behind all of this and I'll do additional blog posts on it later, but for now, to keep it simple, I'll just say that I think this is the missing piece to the puzzle. I think this explains why I am one of the lucky people who is more susceptible to getting a chronic illness, why it is taking forever to treat it, why I feel sooo bad even after making so much progress, and why I am so sensitive to so very many things. It could also explain things like exercise intolerance, seasonal and food allergies, digestion issues, sleep disturbances, weak teeth, and might possibly be a major player in every single symptom I still experience. In fact I think that this is one important factor in why each person's journey with Lyme is so different, we all have different genes that make us more or less likely to manifest certain kinds of symptoms.
This may sound like a horrible thing, OMG you've got a genetic defect! But really I'm so glad I know. It's not something that is going to kill me, it's really pretty easy to treat with a knowledgeable DR.'s help, it is probably linked to most of my symptoms and therefor I should feel a ton better once I start treatment. I'm also really glad to have found this out now so that I can take really good care of myself if we ever try to get pregnant. In fact I'm thrilled to find this out. I have this really strong feeling that getting this under control is going to create a lot of relief for my body, things will start to repair themselves and fall into place, I should start detoxing properly and get rid of the toxins and metals, and my immune system should bounce back and start taking care of the last few little infections. I really think that I'm on the verge of a BIG breakthrough and I'm excited because I think this is going to be the thing that brings me back to being ME.
I know that was a lot, thank you for taking the time to read it all. I so very much appreciate those of you who stick with me through the nitty gritty of this illness. I'll be seeing my LLMD on Wednesday night and I'm going to share this info with him, ask for his input, see what the muscle testing says and ask for some lab work to confirm it. Although I've simplified it to simply a folic acid problem, it is actually a complex chemistry equation and I want to make sure that we use this opportunity to really get a hold of all the little pieces and put me back together once and for all.
If you have any suggestions on tests I should request or questions I should ask my Dr. please let me know. I want to go to my apt as prepared as possible. As always, questions, comments, and support are always welcome. Thanks for being beside me on this journey. HUGS!
Tuesday, September 4, 2012
Gluten Free Scones
I just whipped up a batch of gluten free scones. I've been craving them for weeks now and finally I pulled out my 1,000 Gluten-Free Recipes cook book and got to work.
I had to use what was available in my kitchen and I modified a recipe, but what I came up with was super delicious.
Sour Cherry and Lemon Gluten Free Scones
Ingredients:
1/3 C. butter or Earth Balance (I used Earth Balance)
1 T. grated lemon zest
1 large egg room temp.
1/3 C. of sugar
1/2 C. milk or milk substitute (I used rice milk)
1 1/2 C. flour blend * see below
1/2 C. Tapioca flour
1T. Baking powder
1 1/2 tsp. Xanthan gum
1tsp. guar gum
1tsp. salt
handful of dried sour cherries
** Make a batch of Carol's Sorghum Blend. This can be used in place of all purpose flour in many recipes. It is used a lot in this cook book so I often make double batches to have it ready when I want to bake.
Now go and make some scones and them come back and tell me how your turned out and what changes you made to accomidate your diet and the flavors you had laying around your kitchen.
ENJOY!
I had to use what was available in my kitchen and I modified a recipe, but what I came up with was super delicious.
Sour Cherry and Lemon Gluten Free Scones
Ingredients:
1/3 C. butter or Earth Balance (I used Earth Balance)
1 T. grated lemon zest
1 large egg room temp.
1/3 C. of sugar
1/2 C. milk or milk substitute (I used rice milk)
1 1/2 C. flour blend * see below
1/2 C. Tapioca flour
1T. Baking powder
1 1/2 tsp. Xanthan gum
1tsp. guar gum
1tsp. salt
handful of dried sour cherries
** Make a batch of Carol's Sorghum Blend. This can be used in place of all purpose flour in many recipes. It is used a lot in this cook book so I often make double batches to have it ready when I want to bake.
- 1 1/2 C sorghum flour
- 1 1/2 C potato/corn starch
- 1 C tapioca flour
- Preheat oven to 375
- grease a cookie sheet or line with parchment paper
- in food processor (I used a stand mixer) process butter, zest, egg, and sugar until blended
- Mix together all dry ingredients
- Add milk, and all dry ingredients to wet ones and mix until just blended. Dough will be very sticky.
- Add in dried cherries to your hearts content.
- Use a wet rubber spatula to spread the dough onto the cookie sheet until it's about 3/4" thick. Make the edges straight if possible.
- optional: brush the top with 2T of cream and sprinkle with 1T sugar (I skipped this)
- Bake for 20 minutes
- use a firm spatula to cut the dough into 8-10 pieces, spread across baking sheet and continue baking for 10 more minutes
- Optional: glaze with 1C powdered sugar and 2T lemon juice mixed together (I also skipped this and mine were plenty sweet)
Now go and make some scones and them come back and tell me how your turned out and what changes you made to accomidate your diet and the flavors you had laying around your kitchen.
ENJOY!
Wednesday, August 1, 2012
Revised Protocol for Chronic Lyme Disease and Co-Infections
After my appointment last night I have a revised protocol to deal with my most pressing issues of parasites, bartonella, babesia, and candida.
Morning
4 drops MC-BAB-1
1 drop BAR-1
1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula
Pekana Basic Detoxification & Drainage Kit
-18 drop each apo-Hepat, Itires, and Renelix
1 1/2 tsp. Silvercillin Liquid
20 drops Black Walnut
2 Ashwagandha 400mg
3 IsoCourt
1 garlic pill
Afternoon
2 Food Based Multi Vits
3 IsoCourt
1 dropper Tox-Ease GL
1 garlic pill
Night
1 Melatonin SR 3 mg.
1 Low Dose Naltrexone 4.5mg
4 drops MC-BAB-1
1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula
1 1/2 tsp. Silvercillin Liquid
20 drops Black Walnut
1 drop BAR-1
1 Dr. Ohhira Probiotic
1 energetix Flora Synergy
1/2 tsp Ferrum phos homeopathic remedy
in 1/4 C. water then take 1 tsp. under tongue each night
once a week take 12 pellets instead
And tomorrow I have to do another round of papaya seeds to treat the parasites. I'll be taking 1 Tablespoon of dried seeds, grinding them and putting it in gel caps to take all at once. He has me take them on the full moon because parasites are most active during the full moon and so it's most effective to treat them then. Here is some info on papaya seeds as treatment for parasites: http://superfoodprofiles.com/papaya-seeds-parasites
Questions, comments and encouragement always welcome :-)
Morning
4 drops MC-BAB-1
1 drop BAR-1
1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula
Pekana Basic Detoxification & Drainage Kit
-18 drop each apo-Hepat, Itires, and Renelix
1 1/2 tsp. Silvercillin Liquid
20 drops Black Walnut
2 Ashwagandha 400mg
3 IsoCourt
1 garlic pill
Afternoon
2 Food Based Multi Vits
3 IsoCourt
1 dropper Tox-Ease GL
1 garlic pill
Night
1 Melatonin SR 3 mg.
1 Low Dose Naltrexone 4.5mg
4 drops MC-BAB-1
1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula
1 1/2 tsp. Silvercillin Liquid
20 drops Black Walnut
1 drop BAR-1
1 Dr. Ohhira Probiotic
1 energetix Flora Synergy
1/2 tsp Ferrum phos homeopathic remedy
in 1/4 C. water then take 1 tsp. under tongue each night
once a week take 12 pellets instead
And tomorrow I have to do another round of papaya seeds to treat the parasites. I'll be taking 1 Tablespoon of dried seeds, grinding them and putting it in gel caps to take all at once. He has me take them on the full moon because parasites are most active during the full moon and so it's most effective to treat them then. Here is some info on papaya seeds as treatment for parasites: http://superfoodprofiles.com/papaya-seeds-parasites
Questions, comments and encouragement always welcome :-)
A Bump in the Road
After my last appointment and the incredible Bicillin injections I was feeling fantastic! In fact I was feeling better then I had in years and I felt like I was improving a little more each day. It was an incredible feeling to be bursting with energy, strength, motivation, vitality, love...in essence I felt alive, very very alive and loving it.
I can't not even begin to tell you how happy I was to feel like myself again. The best part was discovering that even after all of the crap I've had to deal with Lyme Disease hasn't broken me. I'm still me underneath all the symptoms and I'm still the incredible person I was before those ticks had me for their lunch. This has not broken me and for that I rejoice!
Perhaps you've noticed that I used the past tense in that first paragraph. Yep, I was feeling fantastic. Not so much any more. I was just plugging along being more active and productive then I have in a very long time and then out of now where I crashed. It was so weird. One morning I was skipping down the street and then later that afternoon my brain was slowing down and I started twitching again.
I kind of freaked out at first. I started wondering things like:
I knew I couldn't take several more weeks of laying in bed barely able to walk or take care of myself and neither could my husband for that matter, so I called my Dr and asked him to squish me in whenever he could. I knew something had changed and I wanted to find out what and deal with it asap so I can get back to feeling fantastic. I saw him last night after he had seen all of his other patients. It was 11:30 when I finally saw him.
I updated him on my symptoms and we jumped right in to muscle testing to see what the heck was going on. Here are my results.
This is on a scale from 1-5 then 0.
Remember that 1= really bad problem 3= active and needs work 5= barely detectable 0= not present
In other words, the higher the number the healthier I am, but the ultimate goal is all zeros.
Test Dec '11 1/12 4/12 5/12 7/5 7/31
Lyme 4 4 2 1 0 0
Babesia 3 2 2 3 5 3
Bartonella 3 2 2 3 0 3
Parasites 0 1 5 0 0 3
Viruses 4 3 3 4 4
Mycoplasma 4 4 4 4 5 5
Yeast/mold/fungi 3 3 4 4 3 3
Bacteria 3 2 3 4 2 2
Neurotoxins 4 4 4 3 2
Metals 4 4 4 3
Interpretation:
Now that I know what is going on I feel quite a bit calmer. I can wrap my head around the symptoms and I've got a new protocol to address my current needs. I'm feeling a little better in general after almost a week in bed and a bit better now that I know what is happening inside my body. I'm all ramped up to take another swing at these buggers and get back to where I was just a week and a half ago. Hopefully this is one of the last major bumps in the road that leads to long term health.
Thanks for reading. Your questions and comments are always welcome.
I can't not even begin to tell you how happy I was to feel like myself again. The best part was discovering that even after all of the crap I've had to deal with Lyme Disease hasn't broken me. I'm still me underneath all the symptoms and I'm still the incredible person I was before those ticks had me for their lunch. This has not broken me and for that I rejoice!
Perhaps you've noticed that I used the past tense in that first paragraph. Yep, I was feeling fantastic. Not so much any more. I was just plugging along being more active and productive then I have in a very long time and then out of now where I crashed. It was so weird. One morning I was skipping down the street and then later that afternoon my brain was slowing down and I started twitching again.
I kind of freaked out at first. I started wondering things like:
- what is causing the neurological symptoms?
- I thought we had kicked Lyme in the ass for good, what if it was just hiding and is back in full force now that I'm off antibiotics?
- How log is this episode going to last?
- What if this is totally separate from the Lyme and it doesn't get better?
- What if I'm going to be on a roller coaster for the rest of my life?
- How am I ever supposed to have a family if I'm like this?
I knew I couldn't take several more weeks of laying in bed barely able to walk or take care of myself and neither could my husband for that matter, so I called my Dr and asked him to squish me in whenever he could. I knew something had changed and I wanted to find out what and deal with it asap so I can get back to feeling fantastic. I saw him last night after he had seen all of his other patients. It was 11:30 when I finally saw him.
I updated him on my symptoms and we jumped right in to muscle testing to see what the heck was going on. Here are my results.
This is on a scale from 1-5 then 0.
Remember that 1= really bad problem 3= active and needs work 5= barely detectable 0= not present
In other words, the higher the number the healthier I am, but the ultimate goal is all zeros.
Test Dec '11 1/12 4/12 5/12 7/5 7/31
Lyme 4 4 2 1 0 0
Babesia 3 2 2 3 5 3
Bartonella 3 2 2 3 0 3
Parasites 0 1 5 0 0 3
Viruses 4 3 3 4 4
Mycoplasma 4 4 4 4 5 5
Yeast/mold/fungi 3 3 4 4 3 3
Bacteria 3 2 3 4 2 2
Neurotoxins 4 4 4 3 2
Metals 4 4 4 3
Interpretation:
- YAY!!!!!! I'm still showing negative for Lyme. It's still possible that it's just hiding, but zeros two times in a row is a really good sign :-)
- Babesia has increased - could explain some of the fatigue, lack of endurance, and light headedness Info on Babesia: http://lymenaide.wordpress.com/2009/10/10/babesia/ AND two videos http://www.youtube.com/watch?v=ZGSWaXy1iHk http://www.youtube.com/watch?v=JOakxoorjoQ
- Bartonella has increased from nothing to active infection. Dang it! This is most likely what is causing my neurological symptoms. Info on Bartonella: http://www.lymedisease.org/lyme101/coinfections/bartonella.html
- I still need to work on clearing the candida from my gut. Info on Candida: http://www.yeastinfectionadvisor.com/systemicyeastinfections.html Video: http://www.youtube.com/watch?v=ahL2POVPeHA&feature=related
- I picked up a parasite, some type of worm. This is what is causing my stomach upset and digestion issues. Who knows where I got it, but the chaos that it's causing on my tummy shows me that any little thing is enough to tip the scales and make me feel sick again. I may be making progress on riding the infections, but I think my immune system is still weak and that's why I pick these up so easily and am so effected by them.
- The increases I've made in in my protocol have killed stuff and I have an increase in neurotoxins that are released as the organisms die. This probably also contributes to my neuro symptoms.
Now that I know what is going on I feel quite a bit calmer. I can wrap my head around the symptoms and I've got a new protocol to address my current needs. I'm feeling a little better in general after almost a week in bed and a bit better now that I know what is happening inside my body. I'm all ramped up to take another swing at these buggers and get back to where I was just a week and a half ago. Hopefully this is one of the last major bumps in the road that leads to long term health.
Thanks for reading. Your questions and comments are always welcome.
Tuesday, July 10, 2012
Current Protocol - What I'm taking to treat chronic Lyme
One of the things I love the most about muscle testing or A.R.T. is that my Lyme Disease treatment or protocol changes often to adapt to the changes happening in my body. I think this method works really well for me because I get to find out what to take, when to take it, how much to take, and it's not a guessing game any more. I finally feel like I know that each and every pill or drop I ingest is actually doing something beneficial for me and I no longer feel like I'm just taking handfuls of pills and hoping that something will work. Instead I'm taking just what I need and it is working.
This is my current treatment plan and it's the smallest, easiest protocol I've had since I started treating in 2008. YAY!!!!
Morning
4 drops MC-BAB-1
1 dropper Jernigan Yeast Ease
1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula
Pekana Basic Detoxification & Drainage Kit
-15 drop each apo-Hepat, Itires, and Renelix
1 tsp. Silvercillin Liquid
2 Ashwagandha 400mg
1 Unique E -400 IU
3 IsoCourt
Afternoon
2 Food Based Multi Vits
3 IsoCourt
1 dropper Jernigan Yeast Ease
Night
1 Melatonin SR 3 mg.
1 Low Dose Naltrexone 4.5mg
4 drops MC-BAB-1
1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula
1 tsp. Silvercillin Liquid
1 dropper Jernigan Yeast Ease
1 Dr. Ohhira Probiotic
1 energetix Flora Synergy
1/2 tsp Ferrum phos homeopathic remedy
in 1/4 C. water then take 1 tsp. under tongue each night
once a week take 12 pellets instead
I'd love to hear what you're taking that works and if you've taken any of these things. Questions and comments always welcome, but remember if you don't have anything nice to say it might be better not to say anything :-)
This is my current treatment plan and it's the smallest, easiest protocol I've had since I started treating in 2008. YAY!!!!
Morning
4 drops MC-BAB-1
1 dropper Jernigan Yeast Ease
1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula
Pekana Basic Detoxification & Drainage Kit
-15 drop each apo-Hepat, Itires, and Renelix
1 tsp. Silvercillin Liquid
2 Ashwagandha 400mg
1 Unique E -400 IU
3 IsoCourt
Afternoon
2 Food Based Multi Vits
3 IsoCourt
1 dropper Jernigan Yeast Ease
Night
1 Melatonin SR 3 mg.
1 Low Dose Naltrexone 4.5mg
4 drops MC-BAB-1
1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula
1 tsp. Silvercillin Liquid
1 dropper Jernigan Yeast Ease
1 Dr. Ohhira Probiotic
1 energetix Flora Synergy
1/2 tsp Ferrum phos homeopathic remedy
in 1/4 C. water then take 1 tsp. under tongue each night
once a week take 12 pellets instead
I'd love to hear what you're taking that works and if you've taken any of these things. Questions and comments always welcome, but remember if you don't have anything nice to say it might be better not to say anything :-)
Friday, July 6, 2012
Fantastic News!
I've been on the new protocol that includes Bicillin injections for just over 5 weeks now. For the most part I have been feeling really good. The twitching has stopped and I can feel my symptoms lifting. I'm sleeping less, have more energy and the brain fog is lifting!!!! Hooooraaayyyy!
It's been really nice finding out that underneath all the layers of sickness and funk I'm still there and I'm still me. As my energy returns I'm discovering just how deeply this illness has effected my entire life. I hadn't fully realized that it permeated every single moment of my life. I had grown so accustomed to lyme "normal" that I didn't realize I was so tired I was moving though space and every moment of my life in a way that wasn't fully authentic. As my symptoms lift I find, for example, that I can suddenly climb stairs without effort, in fact I can bounce up them again. My week little voice has got it's uumph and confidence back. I'm feeling creative and I'm up and moving around most of the day. I even went swimming and to a festival! It's been really nice to discover myself shinning through as the fog begins to lift more then it has in years. When it happens I sometimes think to myself, "Oh yeah, here I am and check me out, I'm freaking awesome!" It's a really, really good feeling.
SO...I had an appointment with my doctor last night and we retested all of my issues and my supplements. The results were surprising. Both the doctor and I we expecting improvements in both how I feel and in my numbers, but we had no idea how good it would be.
Remember that 1= really bad problem 3= active and needs work 5= barely detectable 0= not present
In other words, the higher the number the healthier I am, but the ultimate goal is all zeros.
Test Dec '11 1/12 4/12 5/12 7/5
Lyme 4 4 2 1 0 (we triple checked)
Babesia 3 2 2 3 5
Bartonella 3 2 2 3 0
Parasites 0 1 5 0 0
Viruses 4 3 3 4 4
Mycoplasma 4 4 4 4 5
Yeast/mold/fungi 3 3 4 4 3
Bacteria 3 2 3 4 2
Neurotoxins 4 4 4 3
Metals 4 4 4 3
Interpretation: WAAAAAAHOOOOO!!!!!!!!!!!! (happy dance)
After starting the Bicillin I started feeling better and better until about a week ago when I started to have some symptoms creep back. It looks like taking the Bicillin for 5 weeks did a little number on my tummy and now I've got an increase in yeast and gut bacteria and toxins. These things are to be expected and are likely the cause of my remaining symptoms. It's a tad disappointing to feel funky after feeling so fantastic for several weeks, but at least I know for sure that we are making progress and that I'm in the home stretch right now.
So as of now my doctor says we can't say that I'm cured because there is a chance that he can't detect the Lyme because it's gone into a dormant cyst form, but he said we can say that at least for yesterday I didn't have Lyme!!! He's guessing that as we're making progress and peeling off the layers of illness my body will heal and my immune system will get stronger and things will continue to progress faster and faster (double wahoo and one more happy dance!!!!!!). He's estimating that I'll be better or almost totally better in 2-3 months!!!!!!! No one has ever said that before. I have always been told a year - year and a half for the last 4 years. Things are getting really exciting around here.
What surprises me the most about this great news is how fast it happened. I've been sick for so long and I feel like I've tried everything. The spring was really rough for me, I was twitching so bad and for sooooo long that I was beginning to think I might just have to accept that life was as good as it was going to get. I never expected that 5 shots in the ass would be enough to cause such a dramatic improvement, let alone a possible remission of Lyme. It just blows my mind that one day I can be sick as all get out and then just weeks later feel better then I have in years. It really is amazing.
For now, we've adjusted my treatment protocol. It's focused on the last bit of babesia, yeast, toxins, and bacteria in my gut. It's the smallest protocol I've had since I started treatment in 2008. I'll do another post with the details very soon. I have to be extra careful with my diet, so no more gluten free cookies for a while. I'm really excited to find out what life will be like after the rest of these nagging symptoms lift and are gone for good.
Keep on keeping on!
It's been really nice finding out that underneath all the layers of sickness and funk I'm still there and I'm still me. As my energy returns I'm discovering just how deeply this illness has effected my entire life. I hadn't fully realized that it permeated every single moment of my life. I had grown so accustomed to lyme "normal" that I didn't realize I was so tired I was moving though space and every moment of my life in a way that wasn't fully authentic. As my symptoms lift I find, for example, that I can suddenly climb stairs without effort, in fact I can bounce up them again. My week little voice has got it's uumph and confidence back. I'm feeling creative and I'm up and moving around most of the day. I even went swimming and to a festival! It's been really nice to discover myself shinning through as the fog begins to lift more then it has in years. When it happens I sometimes think to myself, "Oh yeah, here I am and check me out, I'm freaking awesome!" It's a really, really good feeling.
SO...I had an appointment with my doctor last night and we retested all of my issues and my supplements. The results were surprising. Both the doctor and I we expecting improvements in both how I feel and in my numbers, but we had no idea how good it would be.
Remember that 1= really bad problem 3= active and needs work 5= barely detectable 0= not present
In other words, the higher the number the healthier I am, but the ultimate goal is all zeros.
Test Dec '11 1/12 4/12 5/12 7/5
Lyme 4 4 2 1 0 (we triple checked)
Babesia 3 2 2 3 5
Bartonella 3 2 2 3 0
Parasites 0 1 5 0 0
Viruses 4 3 3 4 4
Mycoplasma 4 4 4 4 5
Yeast/mold/fungi 3 3 4 4 3
Bacteria 3 2 3 4 2
Neurotoxins 4 4 4 3
Metals 4 4 4 3
Interpretation: WAAAAAAHOOOOO!!!!!!!!!!!! (happy dance)
- This is the first time I have had 3 zeros!!!!
- parasite free for two months in a row!
- NO more bartonella
- NO more Lyme (fingers crossed)
- Almost rid of mycoplasma AND babesia
After starting the Bicillin I started feeling better and better until about a week ago when I started to have some symptoms creep back. It looks like taking the Bicillin for 5 weeks did a little number on my tummy and now I've got an increase in yeast and gut bacteria and toxins. These things are to be expected and are likely the cause of my remaining symptoms. It's a tad disappointing to feel funky after feeling so fantastic for several weeks, but at least I know for sure that we are making progress and that I'm in the home stretch right now.
So as of now my doctor says we can't say that I'm cured because there is a chance that he can't detect the Lyme because it's gone into a dormant cyst form, but he said we can say that at least for yesterday I didn't have Lyme!!! He's guessing that as we're making progress and peeling off the layers of illness my body will heal and my immune system will get stronger and things will continue to progress faster and faster (double wahoo and one more happy dance!!!!!!). He's estimating that I'll be better or almost totally better in 2-3 months!!!!!!! No one has ever said that before. I have always been told a year - year and a half for the last 4 years. Things are getting really exciting around here.
What surprises me the most about this great news is how fast it happened. I've been sick for so long and I feel like I've tried everything. The spring was really rough for me, I was twitching so bad and for sooooo long that I was beginning to think I might just have to accept that life was as good as it was going to get. I never expected that 5 shots in the ass would be enough to cause such a dramatic improvement, let alone a possible remission of Lyme. It just blows my mind that one day I can be sick as all get out and then just weeks later feel better then I have in years. It really is amazing.
For now, we've adjusted my treatment protocol. It's focused on the last bit of babesia, yeast, toxins, and bacteria in my gut. It's the smallest protocol I've had since I started treatment in 2008. I'll do another post with the details very soon. I have to be extra careful with my diet, so no more gluten free cookies for a while. I'm really excited to find out what life will be like after the rest of these nagging symptoms lift and are gone for good.
Keep on keeping on!
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