Monday, October 29, 2012

On paper I'm pretty healthy.

I've seen my Lyme Literate Doctor twice since I last posted.  I've been having to see him more regularly because my Lyme Disease symptoms have been so up and down lately, especially the neurological symptoms like involuntary movements and the total brain melt that comes with it.

I have been saying for a while now that when I don't have to deal with the chronic fatigue, mental slowing, and physical limitations of my neurological symptoms I am feeling pretty good.  It seems like maybe my good days are getting better, but there is no real improvement in the bad ones.  In fact they seems to be happening more often.  Getting the results of my muscle testing really helps me to be able to wrap my head around my ever changing symptoms and make sense of what is going on inside of my body.  Here are my most recent 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    9/12    9/27   10/24

Lyme                   4                 4            2               1            0       0          0       0        4 

Babesia               3                 2            2                3           5       3           0       0       0

Bartonella           3                 2            2                3            0      3           0       0       0

Parasites             0                 1            5                0            0       3           3       4       0      

Viruses               4                 3            3                4            4                    4       5       4

Mycoplasma      4                 4            4                4            5       5           4       4       0

Yeast/mold/fungi  3              3            4                4            3       3           3       4       0

Bacteria             3                 2            3                4            2       2            4                0

Neurotoxins       4                4                              4            3       2            3       3       3

Metals                4                4                               4           3                     3

Emotions                                                                                                                     4


INTERPRETATION:
I'm looking REALLY good on paper!  I got so many zeros (zero = not present) this time that my Dr. wasn't sure he wanted to believe the results.  Some how since my last apt a month ago I was able to clear myself of parasites, mycoplasma, mold/yeast, and unfriendly bacteria as well as keep the Babesia and Bartonella away!  I've never had so many zeros before.  It's almost too good to be true.  I think that's how the Dr. was feeling too, sort of a let's not get too excited just yet.  We'll see how it all looks at the next apt and if it's similar then we can get really excited.  This could have been a fluke.  Muscle testing is not 100% accurate, but not many tests for the things I have are.

We also received results for some blood work I had done and that returned great as well.  We did a CD-57 (this measures basic immune functioning) and I got a score of 61 which is an improvement over my last score of 33. The goal is 100 for a few months.  My complete metabolic panel was all normal.  My thyroid is functioning properly.  My cholesterol levels were low and he said I have the best healthy to non healthy ratio he's ever seen on paper for a real patient.  We also tested my homosysteine levels.  These would be high if I was having a hard time detoxing.  They weren't high.  So either I'm not having detox issues or the heaps of supplements I'm taking for detox are doing their job.  Sort of seems like I should have stopped my supplements before doing this test to find out what's really going on.

This was all great news.  The only bummer parts were that I'm still muscle testing for a moderate level of neuro toxins, my level of viruses is up (I think I picked up a tummy bug a few weeks ago), and the fracking Lyme has returned at a level 4.  Level four means that it is present and active but not a huge infection.  BUMMER!  I was really hoping to get another zero for Lyme at this appointment so that I could finally say that I was Lyme free.  This new information does however explain why some of my symptoms like night sweats and headaches have returned.  It also lines up with what the naturopath said which was that at the time she tested me with biofeedback I didn't have any adult lyme bacteria in me, but that I did have eggs waiting to hatch.  I have had some stress in my life recently and I think that the stress gave the lyme a better environment in which to hatch and so they came out to play.  It also could have just been that they were ready.  Who really ever knows with these things?  It could also be that the antibiotic injections I got in the spring/summer sent them into hiding.  They made have just made biofilms to hide in and now that the pressure has been off for a while they've come out of hiding.  That doesn't feel as right to me, but it's possible I suppose.

I'm glad to discover that my more minor symptoms have a cause I can understand and I'm hoping that I can kill these new Lyme bacteria before they get too comfortable and reproduce again.  I got rid of it once before I can do it again.  Now if we could only figure out why it is that I'm getting better on paper, but not so much in real life that would be great.  I keep saying this and I'm starting to get pretty frustrated with not being able to find a cause or reliable treatment for the neurological stuff.  It's by far my worst symptom, the most frequent, and the most debilitating and we just can't seem to figure it out.  Hopefully soon we'll get a clue to help unravel this mystery.

Friday, September 21, 2012

Treating Parasites With Papaya Seeds

My Lyme Literate Medical Dr or LLMD turned me on to an easy and affordable way to treat parasites with papaya seeds.  I've had good success with it and I get a lot of questions about it.  In this blog post I'll share some info about the use of papaya seeds for treating parasites, describe how my doctor recommended I use the seeds and offer up some sources for more information.  Please remember that this is just information, I am not a doctor, and that you should always check with your physician before starting any new treatment. 

The seeds from papaya fruit have anti-helminthic and anti-amoebic properties, which means they can kill intestinal worms and other parasites in our digestive system.  Studies are showing that children in Nigeria who are treated with papaya seeds are 75% clear from the buggers after just 7 days of treatment.  Papaya seeds are a successful method of treating intestinal parasites with little to no side effects at an affordable price.  My LLMD says that this is so easy, affordable, safe, and effective that everyone should do this 1-2 times a year as part of a wellness program.

There are lots of ways papaya seeds can be ingested.  They can be snacked on, used in cooking, blended into smoothies, and ground into powder.  Here is how I prefer to take mine. 

  1. Buy a non-gmo papaya
  2. scoop out the seeds 
  3. rinse the seeds and remove any bits of fruit
  4. spread onto a cookie sheet that has been covered with paper towels
  5. Let dry in a warm place for as many days as necessary.  I have a window box that is perfect for this part of the process.
  6. Measure out 1Tablespoon of seeds and grind them in a spice grinder
  7. Carefully put the powder into gel caps. I have a 1/8 teaspoon that helps with this step.  I usually get about 15 caps, but it depends on the size you use and how full you pack them.
  8. On an empty stomach right before bed I take all of the pills I filled at once.
  9. Repeat again on the full moon.
Here are some websites with more info on how to use papaya seeds to treat parasites and some recipes for smoothies.  Just an FYI the seeds taste like black pepper.  It's totally okay to just eat them or put them int your food, but keep in mind they are quite peppery.  That's why I use the gel caps, I don't really care to taste them.
  
Info and smoothie recipe:
http://superfoodprofiles.com/papaya-seeds-parasites

Info on the standard honey and papaya seed method:
http://voices.yahoo.com/a-natural-cure-parasites-study-confirms-honey-6988304.html

Dr. Oz segment on parasite treatment:


Thursday, September 20, 2012

My New Protocol for Lyme and MTHFR

Here is my updated protocol for treating Lyme related infections and addressing the MTHFR genetic mutation I have that causes me to be vitamin deficient and have difficulty processing folic acid, all of which results in difficulty with detoxing. 

Morning

2 drops MC-BAB-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

2 Ashwagandha 400mg

3 IsoCourt

1 B6 Pyridoxal 5'-Phosphate

1 ActiFolate from Metagenix

1/2 tsp Ferrum phos homeopathic remedy
in 1/4 C. water then take 1 tsp. under tongue each night, save mixture and use again in AM


Afternoon

2 Food Based Multi Vits

3 IsoCourt

Night

Melatonin SR 3 mg.

1 Low Dose Naltrexone 4.5mg

1 Dr. Ohhira Probiotic

12 tablets of Chlorella Mana

2 drops MC-BAB-1

Pekana Basic Detoxification & Drainage Kit 
-18 drop each apo-Hepat, Itires, and Renelix

1/2 tsp. Neuro-Antitox II Basic
- Apple Cider Vinegar formula

1/2 tsp Ferrum phos homeopathic remedy
in 1/4 C. water then take 1 tsp. under tongue each night, save mixture and use again every AM
once a week take 12 pellets instead


Over time I will be adding in these additional items.  I am choosing to add one at a time because I want to see how each supplement effects me.  I am also being careful about not opening up my detox pathways to quickly out of concern that I will dump a bunch of toxins and metals at once and feel really sick for a while.  Slow and steady is the trick here.

2 Zinc Picolinate
2 ProEPA Fish Oil
1 dropper 3 x per day Jernigan Yeast Ease
5 sprays ACZ nano
Increase Cholrella Mana to 12 tabs 2 x per day
7 sprays each side of nose 3 X per day Argentyn 23 silver spray
2 3 X per day Para-Gard


Monday, September 17, 2012

Muscle Testing and Biofeedback Confirmation

Last week I had an appointment with my LLMD and I told him all about my visit with the naturopath and what she uncovered with her biofeedback testing.  He was really intrigued and listened closely while I explained what she had uncovered.  He ran me through his normal list of muscle testing for me and added in a few things to explore this new info.  I was really excited when their testing was in synch with each other.  It's always so validating when two different practitioners with very different testing methods come up with pretty much the same results. These are the results from my muscle testing.

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    9/12

Lyme                   4                 4            2               1            0       0          0 

Babesia               3                 2            2                3           5       3           0

Bartonella           3                 2            2                3            0      3           0

Parasites             0                 1            5                0            0       3           4

Viruses               4                 3            3                4            4                    4

Mycoplasma      4                 4            4                4            5       5           4

Yeast/mold/fungi  3              3            4                4            3       3           3

Bacteria             3                 2            3                4            2       2            4

Neurotoxins       4                4                              4            3       2            3

Metals                4                4                               4           3                     3



Interpretation:

AWESOME!  He didn't find ANY signs of active infections of Lyme, Bartonella, OR Babesia!  This is great.  It doesn't mean that they are totally gone, just that they aren't active right now.  If the naturopath was right then it's possible that I really don't have bartonella any more and I just have eggs of the Lyme and Babesia.  When I asked my LLMD if I should be on something to kill them if they do hatch he said that if there are still eggs they will only hatch if the environment if favorable for them and that it's possible they will never hatch.  I like that idea, but I like the idea of being rid of them even better.  I think this is one of those times where the only option is to wait and see if my testing stays at zeros for a long while.  This is the first time I have tested negative for Babesia and the first time I have tested negative for all 3 infections.  This is progress.

In addition, this is also the first time that my highest number is a 3.  Remember 1 = #1 problem, big deal, bad news.  SO right now my worst issues are probably parasites, toxins, and mold.  Each of those is substantial enough to make some one really sick.  I've still got a bit of work to do, but I'm coming along and making progress.

What I was most curious about was the naturopath's discovery of a genetic mutation that effects the way my body metabolizes folic acid.  The mutation is called MTHFR and is probably more common then most people think.  The key thing about this mutation, for me, is that it causes blockages in the detox pathways.  I'm beginning to suspect that a lot of the reason I still have such severe neurological symptoms is because I'm not properly detoxing.  Expensive lab tests are required to confirm exactly which mutation I have and the complexities of how it is effecting my body.  This MTHFR issue causes lots of deficiencies in vitamins and minerals.  These showed up in my biofeedback testing and again in my muscle testing.  My body really wanted B vitamins, folic acid, fatty acids, zinc, etc to address this problem and the associated imbalances.  For now that's all the confirmation I get on this issue.  I have started the protocol for treating this detox issue and I hope it will help me to feel better.  I suspect that I will be doing some lab work soon to get more info because this is a really complex health issue.  I'll do a separate post soon that goes into detail on this mutation and it's significance.

For now, I'm trying to recover from an episode of pretty bad neurological symptoms and twitching.  I'm starting a new protocol that focuses on MTHFR and detoxing and I'll be looking into figuring out where there could be mold in our house and buying an ionizer to help clear the air.  I'm optimistic that we have finally found the piece of the puzzle that will make all the other pieces fall into place.  This MTHFR thing is something I'm going to have to attend to for a long time, possibly for ever, but taking a few vitamins and some folic acid are no biggie if it means I can finally start feeling good and get back to living life.

I hope all of you are finding what you need to live happy and healthy lives.  Thank you for being with me on this journey. 

Questions, comments, and words of encouragement are always welcome.

Sunday, September 16, 2012

Is there a cure for Lyme Disease?

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 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!




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.
  • 1 1/2 C sorghum flour
  • 1 1/2 C potato/corn starch
  • 1 C tapioca flour 
  1. Preheat oven to 375
  2. grease a cookie sheet or line with parchment paper
  3. in food processor (I used a stand mixer) process butter, zest, egg, and sugar until blended
  4. Mix together all dry ingredients
  5. Add milk, and all dry ingredients to wet ones and mix until just blended.  Dough will be very sticky.
  6. Add in dried cherries to your hearts content.
  7. 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.
  8. optional: brush the top with 2T of cream and sprinkle with 1T sugar (I skipped this)
  9. Bake for 20 minutes
  10. use a firm spatula to cut the dough into 8-10 pieces, spread across baking sheet and continue baking for 10 more minutes
  11. Optional: glaze with 1C powdered sugar and 2T lemon juice mixed together (I also skipped this and mine were plenty sweet)
I ate mine piping hot and topped with Earth Balance and two jellies, apricot fruit spread from Santa Cruz Organic and a homemade cherry strawberry from Happy Girl Kitchen Co.  I try to limit the amount of sugar I consume so I skipped adding and extra to the top and they were plenty sweet for me.  My husband declared them as his new favorite pastry.

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

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:
  • 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?  
 As I said, I kind of freaked out.  I know that most of these thoughts were irrational and that I was just in a state of disbelief.  I really, really thought I was just weeks away from being healthy for good and I was so very disappointed when my worst symptoms returned.  I'm finding that the better I get the harder it is to deal with the setbacks.  It's like I can see the light at the end of the tunnel, but I'm running on a treadmill and getting nowhere fast.  It's exhausting and frustrating.

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.
So in general, things aren't tooooo bad.  I'm still getting better over all I just need to refocus my protocol on parasites ( they work as a team with the tick infections and make the whole picture worse) and the co-infections of bartonella and babesia.

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

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)
  • 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
What, WHAT?  Did I just say I currently don't have LYME?  Yes, yes I did!!!

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!


Wednesday, June 6, 2012

These are a few of my favorite foods

People often ask me what I eat if I can't eat wheat, dairy, and about a zillion other things.  Well, I've made a list for you of some of my favorite foods.  Hopefully you'll find some inspiration here.  I'm sure you'll discover that my diet is anything but boring.  Comments and questions are always welcome.  Bon apetit!   Did I spell that right?

Breakfast

Scrambles - scrambled eggs with whatever I can find in the fridge ( potatoes, spinach, zucchini, asparagus, turkey sausage, tomatoes, rice, black beans, tomatoes, chard, kale, quinoa, leftovers, etc.)

Toast and scrambles eggs - I like udi's breads and bagels and Food for life's english muffins

Homemade Muffins - pumpkin or fresh blueberry are my favs

Pancakes - usually homemade, but occasionally Trader Joe's GF if I don't feel well

Crustless Quiche - There is a recipe on my blog

Breakfast Sandwiches - Bagel, egg, turkey sausage, turkey bacon or sliced lunch meat, cheese (daiya), spinach, pesto (homemade), tomato

Quinoa - I'll cook it with stock and then top it with eggs and spinach and maybe some turkey sausage

Pigs in a blanket muffins - Just make muffins, but use pancake batter and stir in breakfast sausage and bake - YUM!

Omelet - stuff with your fav fillings


Lunch

Most of the time I eat dinner leftovers for lunch or I snack heavily, but sometimes I will make something just for lunch.

Turkey Sandwich on Udi's bread - When I get really inspired I'll use pesto, sundried tomatoes, olives, cheese, spinach, lettuce, tomato, cucumber, sprouts, etc.

GF mac n cheese - I make it with Earth Balance and rice milk to lower the amount of dairy

Turkey dogs - no bun

Nachos

Frozen GF pizza

Frozen GF chicken nuggets

Tuna on thin rice cakes or rice crackers

Salad

Green apple and cashew butter

Taquitos

Grilled "cheese" sandwiches

Canned soup

Thai noodle soup - similar to top ramen


Dinner

Most of my meal planning revolves around dinner.  I find that there are often enough leftovers for lunches and the extra ingredients can be used in breakfast and lunches.

Stir Fry and Rice - I usually use chicken and lots of veggies and top with GF sauces from San-J or I make my own

Fried Rice - Can be made with Stir Fry ingredients, I usually use chicken and veggies and GF tamari soy sauce, ut you can use any leftover meat or even tofu

Taco night - crunchy or soft corn tortillas, ground chicken or turkey, black beans, rice, and all the fixins

Nachos - Use taco night left overs and pile 'em high for nachos.  I like to get chips with flax or something as healthy as possible

Enchiladas - I'll use any leftover taco night fillings and add potato, chard, spinach, olives, green beans, or any other veggies I have available, roll into GF tortillas and top with green enchilada sauce.  I like the GF tortillas at New Leaf the best, but I'll use teff I can't find them.

Roasted Chicken - I get a whole chicken, brine it over night and bake it with carrots and potatoes

Chicken Soup - After we've eaten most of the chicken I'll make soup out of it.  Sometimes I add quinoa, GF noodle, or rice, but always use lots of veggies

Cornbread and Chili - I like Pamela's mix the best, just top with black bean chili and you're done!

Baked Potatoes and Chili - Same as above.  Sometimes I make my own chili other time I used canned.

Chili Dogs - self explanatory 

Hearty Salad - This is an everything but the kitchen sink type salad.  We try to eat this once a week or so to be sure we're eating enough veggies.  I make a typical salad with garden veggies and we'll top it with any number of things - chicken, turkey bacon, sunflower seeds, pumpkins seeds, cranberries, raisins, sliced apple, toasted nuts, GF croutons,  beans, sprouts, mandarin oranges, cabbage, anything
Burgers - We'll get ground turkey or chicken and mix it with fun stuff like fresh garlic, parm cheese, pesto, sun dried tomatoes, etc. and let it sit for at least an hour before we grill 'em.  I usually top mine off with agave sweetened BBQ sauce, cheese, tomato, and wrap in romaine leaves.  I've come to prefer it without the bun.

GF Pasta -  right now my favorite is quinoa pasta, but some of the brown rice ones are good too.  I have two styles of sauce that I alternate between.  One is dairy free creamy pesto with veggies and the other is homemade tomato sauce made with whatever I have

Pizza- homemade GF crust topped with all kinds of yummy stuff

Creamy Polenta - topped with mushroom sauce, pesto, or marinara and cheese

GF beer battered fish - I usually use talapia or cod

Homemade veggie sushi - just make sticky rice and julienne a bunch veggies and roll 'em up

Crustless Quiche - recipe on my blog, just bake yummy stuff with scrambles eggs and call it dinner

Apricot Teriyaki Chicken - recipe in the 1000 GF recipes cook book

Bruchetta - I'll make GF french bread and my own bruchetta topping and pair it with salad and call it dinner

Thanksgiving dinner- roast turkey breast, mashed potatoes, green beans, salad

Sausages - we like the sundried tomato chicken sausages at TJ's because they don't have intestines

Felafel Balls with salad and rice or quinoa 

Tamales - usually store bought, but sometimes we get homemade ones from local families


Side Dishes

Homemade fries or potato wedges - I like to use sunflower oil and itallian herbs

Carrot fries - slice like fries, top with high heat oil and sea salt and bake at 425 until slightly blackened

Quinoa - add flavor by cooking with stock

Brown rice

Salad

Grilled veggies - we like zucchini and asparagus the best

Veggies sauteed in garlic and butter

Carrots and snap peas in creamy carrot "butter"

Steamed veggies

Cucumber and tomato salad

Asian Cucumber cups

Green Beans with olive oil and lemon

Baby Carrots and hummus

Mashed Potatoes and Gravey

Sweet Potato fries


Snacks

Homemade granola bars

GF pretzels

Green apple with cashew butter

Fresh Fruit

Fruit Leather

Nuts - mostly cashews

Popcorn (rarely)

Corn chips and salsa

Fresh veggies with hummus

Dried fruit

GF crackers

Rice cakes - I like the thin ones the best

Pumpkin or sunflower seeds







Friday, June 1, 2012

My current Lyme Disease Treatment Plan

People often ask me what I'm taking to treat Lyme Disease, it's co-infections, and all the assorted symptoms and related issues that come along with it.  I've put together a list of what I take and provided links to helpful resources as often as possible, just click on the colored words to get more info about the product or it's use.  Please feel free to comment or ask questions.

Morning


3 drops MC-BAB-1

1/2 tsp. Neuro-Antitox II CNS/PNS 
- Apple Cider Vinegar formula

1/2 tsp. Silvercillin Liquid

2 Ashwagandha 400mg

2 Andrographis 400mg

1 Acetyl -L-Carnitine 500mg

1 Unique E -400 IU

2 Food Based Multi Vits from Advanced Nutritional System

3 IsoCourt

2 Isoquercetin 100 mg.






Afternoon

1 Acetyl -L-Carnitine 500mg

2 Food Based Multi Vits

3 IsoCourt

1 Lithium Orotate

1 Vitamin D3 5000 IU

Night

2 Melatonin SR 3 mg.

1 Low Dose Naltrexone 4.5mg

Pekana Basic Detoxification & Drainage Kit 
-15 drop each apo-Hepat, Itires, and Renelix

3 drops MC-BAB-1
1/2 tsp. Neuro-Antitox II CNS/PNS
- Apple Cider Vinegar formula

1 tsp. Silvercillin Liquid

2 Andrographis 400mg

1 Magnesium Taurate 125mg

1 Acetyl -L-Carnitine 500mg

1 Lithium Orotate

2 Isoquercetin 100 mg.

1 Dr. Ohhira Probiotic


Soon I will Be adding Smilax and weekly Bicillin Injections


Thursday, May 31, 2012

Doctor's Visit

Last night I went for an appointment with my Lyme doctor.  I've been having a lot of neurological symptoms lately so I was really looking forward to seeing him.

We reviewed my current symptoms: fatigue, involuntary movements, tingly arms, difficulty walking, slowed speech and cognitive function.  In general I feel like if only I didn't have these few really debilitating symptoms I would be doing really well.  I can feel the old me trying to rise to the surface but it's as if I'm weighted down by these few major issues.  We also reviewed the list of my old symptoms and celebrated having so many of them resolved.

Then we moved on to muscle testing or ART as some people call it.  We tested for my current infections and compared them to my last visits.  He uses a ranking system where 1 is the most active or biggest problem, 3 is present but not incredibly active, 4-5 is detectable but at a verylow  level, and 0 is not present at all.  Here is an over view of my ART results.

Test                    Dec '11      1/12       4/12          5/12

Lyme                   4                 4            2               1           

Babesia               3                 2            2                3

Bartonella           3                 2            2                3  

Parasites             0                 1            5                0

Viruses               4                 3            3                4

Mycoplasma      4                 4            4                4

Yeast/mold/fungi  3              3            4                4

Bacteria             3                 2            3                4                

Neurotoxins       4                4                              4

Metals                4                4


Looking at my results we can see that in general I have really good numbers.  Pretty much everything is at a 4 except for babs and bart which are 3s (present but not reeking havoc).  I have gotten rid of ALL parasites.  I think my effort to avoid sushi has helped with this along with some good supplments.  I'm doing pretty well except for a raging case of Lyme Disease.

What I find really interesting about this method of testing is that it often explains how I'm feeling.  I had said that I felt like if I cold get these last few really awful symptoms to clear I would be feeling great and i think I was right.  Once I get this Lyme under control I should be feeling a lot better because I'm not dealing with as many big infections any more.

The next thing we did was to test all of my current protocol.  We discovered that as usual I'm really sensitive to a lot of things and about half of my treatment was no longer working for me.  Taking so many things that my body was no longer liking  might also have been contributing to me not feeling so well these last 4-6 weeks.

We removed all of the stuff my body didn't want, adjusted the doses on a few items, and then added in just a few new things to treat this raging case of Lyme.  I left with a good understanding of what is happening inside my body and a significantly smaller protocol which made me happy.

One of the best lessons I have learned since doing this muscle testing is that sometimes when I think I'm not getting better, that's not the case.  Instead it sometimes is just a switching of dominance in my my infections.  One month I may feel very neuro, another month short of breath, and another my gut may be hurting.  I've learned to recognize that just means that things are changing.  As I clear out one infection another rises to the top and I attack it.  In general, my results are getting better and I'm on a good path.

I'll be doing another blog post soon with my new protocol, but for now I'll share that he wants me to go back on antibiotics for a little while.  I tested well for Bicillin injections.  He thinks 4-6 weeks at one injection a week should perk me back up.  If it doesn't knock out the entire infection we will rotate to something else because after a while the Lyme bacteria adapt and it looses it's effectiveness.  I'm not looking to the pain that comes along with the injections or the ensuing herx reaction, but I am really excited about feeling a lot better and kicking Lyme in the ass once and for all.

Questions and comments always welcome.

Thursday, May 10, 2012

The Unpredictibility of Chronic Illness

One of the hardest parts about living with a chronic illness like Lyme Disease is the unpredictability of it.  Each day when I wake up I have no idea how I am going to feel and what I will be able to do that day.  I start each day with good intentions of feeling great and a list of things I'd like to do, but things don't always go the way I'd like them to.  Today was one of those days.

Today I woke up feeling pretty good.  I was excited about the beautiful weather and I was able to get a quick start to the day.  I went out for a really nice appointment with my chiropractor and dropped off a prescription at the pharmacy.  One the way home I started feeling withdrawn and tired.  I think I yawned 5 or 6 times on the 10 minute drive home.  I thought maybe I would need to take a nap this afternoon, but by the time I had made it upstairs, gone to the bathroom and walked into the kitchen to try to make lunch I was moving at the speed of a snail.  I found myself standing in the kitchen, slightly hunched over, silently staring at the sandwich fixings my husband had set out.  I wasn't moving or talking and I found myself wondering why he was moving around in the kitchen so fast and how I was going to find the energy to make a sandwich for myself.  

Then I realized it wasn't him who was moving fast, it was me who was moving slow.  Within a matter of minutes I had gone from perky and ready to tackle my to do list to total space cadet and barely able to stand.  My husband noticed and asked how I was doing and I told him I didn't feel quite right and that I didn't think I could make a sandwich because I was going down hill fast.  

As I was saying that my leg and arm contracted and I began to have a series of big involuntary movements that I call twitching.  I guess it's sort of like a tick or a spasm.  It doesn't hurt at all and I'm so thankful for that, but when it happens it sort of feels like my brain partially shuts down.  I get slow both physically and mentally, I become very weak, my speech slows, I have a hard time standing, and I become extremely exhausted.

Lucky, my husband was right there and he knows just what to do to help me get through these random blips.  He put me on his back and gave me a piggy back ride to the bedroom where he set me up with my laptop, water, and made my sandwich for me.  He gave me a few words of encouragement and then let me rest for a while.  

About an hour later I had to get up to go to the little girls room.  I was slow and jerky in my movements, but I made it there.  I tried to go from the bathroom to the kitchen to get some water with lemon to help with detox ( I think these episodes come on most often when I'm toxic and I had just upped my dose of Bab-1 and Bb-1), but I couldn't walk that far.  I took a few steps and tried to talk to my husband, but it was too much for my brain and I had to lay down on the floor to rest.

This video is of my trying to get up off of the floor and walk by myself just a few minutes ago.  You'll see that I need to use a chair to get myself up off of the floor and that the effort of trying to take just a few steps is making things worse and finally I just get so exhausted that I fall back to the floor to rest and continue twitching. Sorry it's sideways, I can't figure out how to rotate a video.  If anyone knows I'd love to learn how.




I wanted to share it with all of you so you could see what this twitching I keep referring to looks like.  I also wanted to share it because May is Lyme Disease Awareness Month and I one of the messages I want people to hear about Lyme is that it is serious, it can effect your life in really big ways if you don't get god treatment right away.  The symptoms are different for everyone and this just happens to be one of mine.  

I'm happy that this is something that only happens occasionally, that it doesn't hurt, that I'm not having seizures or dying, that it is happening less often, with less severity and with shorter duration (it used to last for weeks or months, not just days or a week at a time).  I'm also glad that I'm learning how to deal with it to minimize it as much as possible, and that my husband is here and knows just what I need when this happens (I couldn't get through this without him), but it sure makes life unpredictable.

I'll likely spend the majority of the day resting in bed or on the couch because it gets better when I sit or lay down and worse when I try to get up and move.  I'll have to reevaluate my to do list for today and postpone most of the items until this passes.   The hardest part is that I have no idea how long this will last.  It could be just most of today or I could be like this for a week.

I've come to terms with this limitation as best as I can.  Sometimes I get really disappointed about not being able to be up and doing things, but I try not to linger in that feeling.  Mostly, I just try to avoid situations that seem to trigger it and give in to the resting when my body demands it.  Sometimes though, I wish other people were a little more understanding of how this effects my ability to do things.  It's hard for me to plan things far in advance or commit to things that would demand a lot of time and energy (like getting a job or traveling) because I never know how am I going to feel and what my body is going to let me do at any given moment.

Have any of you experienced something similar to these movements?  What caused them?  What did you do about it?  How did it effect you?  Leave me a comment and tell me your stories, I'd love to hear them.  

LinkWithin

Related Posts Plugin for WordPress, Blogger...