Cannabis for Lyme Disease

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cannaleafCannabis use is a Process, not a silver bullet. But it is a worthy process to go through.

My journey with cannabis for lyme began about 7 years ago, and about 3 years ago I learned about the oil (you can read my article Cannabis Oil, Shifting the Paradigm below) Since then, much has been experienced and learned. I began the first facebook lyme and cannabis group in 2013 and we have since gathered a tremendous amount of information, as well as there are now other groups for lyme and cannabis hard at work gathering more. Due to a very long and in depth journey with this healing plant, much wisdom and information about the process of using it has been gained, however, there is no “perfect formula” or “standardized treatment” for using cannabis.

Currently I am only smoking cannabis and using a transdermal preparation. I still must take breaks from treatment with the oil itself due to herx reactions, which is where I am at now, on a break. But I continue to heal. Even with cannabis it is a deep spiritual, physical, and emotional process, not a quick fix. It is better to learn your way by developing a relationship with the energy of the plant and with your own body and your own intuition than to follow any one’s rules for using it, though initial research and guidance from more experienced users (best to find others using it for lyme) are a good way to find starting guidelines. Lyme does not neatly fit into the cannabis protocol developed by Rick Simpson (please do not attempt that type of dosing), nor do we do well with the solvent he uses, from what I have seen over time. Cannabis has not cured me, but continues to help me. And with lyme we need all of the non-harmful help we can get. I believe that managing symptoms and discomfort are as important as battling the disease itself. I no longer subscribe to a “grin and bare it” attitude about herxing.

There are many emotions that arise when utilizing cannabis, and this is a very important piece of the healing puzzle. Working with our emotions, past memory, trauma, fear, anxiety, and bad habits are fundamental to the process of healing lyme. I have often seen many who feel the strong emotions that arise when using cannabis and think they are a “side effect” and I do not think this is the case. I think it is more a matter of the latent emotions which are stored “come up” for purification. And in this sense I have experienced cannabis as a strong emotional healer as well as a fine physical companion.

Cannabis can be used for lyme in so many ways, it is not limited to smoke. It can be used as multiple types of oils, infusions as well as concentrates. It can be vaporized, used transdermally, it can be eaten in foods, and it can be used raw by juicing the leaves of the plant (though this has proven to be the most difficult to access).

Cannabis continues to bring me comfort, ease, support, healing, and relief from suffering. It helps me sleep better, eat better, and de-stress. It is a blessing on this very difficult journey. I encourage anyone who is beginning their path to learn as much as they can, and to really rely on the advice of others with lyme who are experienced in using cannabis second only to their own inner guidance and intuition. Go slow, start slow, remember it is a process and respect the potency and the power of the medicine. Taking breaks is ok. I do it all the time and find “pulsing” the medicine to be best for me, that may not be true for  you, and you should do what your body needs. The links below should help you along your journey and orient you to some of the general yet progressive cannabis info.

Links to my article and a radio interview specifically on Cannabis for Lyme

Vegascannabismag.com article “Cannabis Oil, Shifting the Paradigm” Page 20-21

http://issuu.com/vegascannabismagazine/docs/vegas_cannabis_magazine_oct_2014

Blog Talk Radio “High Noon” Discussion Cannabis for lyme disease

http://www.blogtalkradio.com/papsite-radio/2013/12/14/high-noon–cannabis-oil-lyme-disease

Other helpful and important links for Cannabis specific healing:

A place to begin, Run From the Cure the Rick Simpson Story

https://www.youtube.com/watch?v=0psJhQHk_GI

RAW juicing of cannabis, Kristen Courtney’s story

https://www.youtube.com/watch?v=7xPmR8j4plw

Cannabis International, views cannabis as dietary essential

http://www.cannabisinternational.org/

Shona Banda’s story and method, she healed herself from Chron’s with Cannabis Oil

https://www.youtube.com/watch?v=x_otUB7pVMA

Colorado Dispensary article on ACT therapy Advanced Cannabinoid Therapy

http://sensiseeds.com/en/blog/riverrock-colorados-largest-dispensary-2/

About our Endocannabinoid System that is now being discovered

https://www.youtube.com/watch?v=aVS9QIzTT7k

For further information please join one of the cannabis for lyme groups on facebook

My group

https://www.facebook.com/groups/375646122538840/

Another wonderful cannabis for lyme group

https://www.facebook.com/groups/1506598772889860/

 

Modern Medicine People- We have come to build a bridge

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A Love Note to my fellow medicine men and woman

 

The “others” are beginning to come out of their caves and down from the high planes and quietudes of the montain ranges and peaks. The Masters of tomorrow are coming from the valley of the shadow of death into the daylight of this dimension to sing their medicine to the people connected by strings of light to exact our roles in geometric formation sacred beyond the times of the ancients. I danced in a pow wow from 10,000 years ago to which I belonged. I was home with the ancestors. Viva the ancestors!  I see you. I love you. I  honor you. The Awakening was a seed I had faith in, but now it is a strong seedling with roots that are spreading with strength and swiftness across the landscape of consciousness. Water. Nourish. Build. The medicine people are back and to you all I offer a song of gratitude and a feather from White Hawk medicine for your alters. As your songs are why I can live and take one more step forward with a shining heart.

 

Inspired by “Build a bridge” by Nahko Bear and Medicine for the People….loving their music and message

 

Amanita Muscaria for Lyme: A little known pain killer

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amanitaFor so many years, 10 actually, I was in awful pain daily from chronic low back pain I had as well as from the myalgias and joint pain of Lyme disease. In 2012 I was at a very low point due to my pain and I prayed to God to help me find a way. I was also suffering from daily nausea that was two years and counting. This combination of debilitating symptoms was simply too much for me. In Fall of 2012 I came upon a few plant (one fungi) medicines that really helped me. One of them, Amanita Muscaria or Fly Agaric, the famous mushroom depicted in Disney films and iconically known worldwide for its bright red cap and white dots, came into my consciousness and has since been one of my very favorite allies. It is an ally and not an inert fungi. When I first started noticing it, I just had a feeling about it, I felt drawn to it. Then I found a woman who had Lyme in the UK and had utilized this very fungal ally as a remedy for some of her most daunting Lyme disease symptoms, and especially pain. I flew through her entire blog with utter fascination and I knew I had to utilize this. I started to research more about the beautiful mushroom and what I found was no short of a trip down a rabbit hole, and a visit to wonderland. Not in the way you may be thinking.

I found that in Russia, it is utilized for it’s pain killing properties, and has been for eons. It has untold medicinal properties. In Siberian villages, it was used to help the elderly during the winter time for strength and endurance. The Vikings utilized it to become insensitive to pain and feel enormously strong against their conquests. The Shamans of Siberia utilized the mushroom in a sacramental way. In fact, some scholars have argued that it is the ancient Soma of the Rig Veda, and that most religions were channeled out of a sacred intoxication with this plant. While that idea tantalizes the mind, it is certainly too lofty to explore here. What I want to speak of is my experience with Amanita Muscaria, and how it helped me to become free of the plague of chronic pain, structural pain in my back due to disc bulging, as well as the myriad types of pain that Lyme disease creates, muscular aches, shooting pains, migrating pain, joint pain. I have been freed of most all of these pains that I had before working with this medicine.*

I obtained some mushroom specimens as well as a bit of tincture made from them. I began by eating very small amounts to see how I felt. A piece about the size of my thumbnail is what I took to begin, and I felt a slight change, and a few alterations in perception. I started to sweat a lot and felt extremely happy, and I also felt a distinct opening of my heart. It didn’t occur right from the start, but I continued experimenting with it in different forms. I made an oil from it, I heated it in butter, I soaked it in grape juice, I used the oil trans-dermally, and then I got my tincture. This, I put directly on my spine, where my back pain was. Key word is WAS. Over the next few weeks I started to notice I didn’t have any pain. If I would stop utilizing the mushroom, the pain would return.* But one of the things that was so surprising to me, is after the initial few weeks of experimentation, I simply had to use 1 drop right on my spine and it took all my pain away for about a week. Even in areas where I did not put the drop. No back pain, no muscle aches, it was all just kind of gone. I still had some breakthrough pain in my neck and shoulders, but the majority of my pain was reduced to almost nothing. I came off of my pain medication I had taken for the past 7 years thanks to this friend in the Fungi Kingdom, and I am still off of them completely as I still (Nov 2013, a year later) have no pain.*

The pain reduction isn’t the only benefit I received. I had much more energy when I used it and I found my depression started to dissipate. I felt a definite sense of the Spirit realm and a connection to nature, yet I didn’t trip out or anything like that, but I did feel like it was communicating with me in various ways. I started to see it everywhere, and I also started to find a lot of amazing information on it, including others who had used it with success to heal everything from arthritic joints to severe lifelong depression. All of a sudden my friends started to see it everywhere, it was a very cool phenomenon. I continue to use this very sacred ally through tincture I make myself. I use it daily to take away the pain of living with Lyme disease, as there has been a tolerance I have developed and I do need more now. I currently use about 5-8 drops on my spine per day.

The pain reduction qualities are so impressive I started to wonder why we know nothing of it, why science isn’t figuring out how to make the best pain medicine that is totally non-addictive from it. I, mean, I had tried all of the medical industries “solutions” to pain, and YUK. It is a world fraught with despair and addiction, and often the pain becomes just as bad after you get used to their narcotics and you are still in pain, yet now you are an addict too. It is a dark world, and there is great need for the relief this fungi brings.

When I started working with Amanita, It felt like I was developing a relationship with the energy and essence of it. There is no prescription for it. One must see how it responds to you individually, as well as use caution because it is an entheogen, and can be poisonous. So I started very cautiously and I do feel there was some adjustment my system had to make to it, like I had headaches at first after using it. But I no longer get them. I think that there is a detoxification process that it puts you through before revealing it’s gifts of pain annihilation, increased energy and stamina, and a happy disposition. I feel that there is a healing quality to it on top of it’s analgesic properties. Entheogens and sacramental plants and fungi are making their way back into the consciousness of the masses, and it is my belief that they hold many of the answers to our most pressing questions of health and healing, and can help us to become like the phoenix that rises from the ashes.

*I used AM for a few years, it did end up healing my chronic low back pain, but in the end was not able to heal the other types of pain I was experiencing. I am not recommending this for anyone, I am simply sharing my experience. I am very grateful for it’s effects on my physical and mental health, but there came a time when I stopped using it and my illness became more complex in different ways. So, basically, my update is that it helped me tremendously for a time, it healed my low back pain, and then I stopped using it. It may come back into the picture for me, only time will tell.

Here is a link to another blog describing it’s use in relationship to lyme disease

http://flyagarictincture.blogspot.com/

Letters for Lymies: A way to help from your bed

01-writing-a-letterHello all! Please help your fellow Lyme sufferers by writing to their senators on behalf of their disability claims. This is a way we can help each other even though we are tired and in bed most of the time! Often times people with Lyme are denied disability, that is very much needed and deserved, because of lack of evidence. One way to help fellow Lyme sufferers is to write to their senators on their behalf. The more letters received on a case, the more likely they will be successful in getting approved. My goal here is to have an “army” of Lymies, who are looking for ways to be of service to their community, signed up to be “letter writers”. If you are interested in becoming a letter writer email me  @ carpedium11@yahoo.com saying so and from this point on, we can all write letters on an as needed basis. I will write and publish the standard letter that can be sent out, and all you have to do is go to the websites for each Senator (two) and fill out the email form on their website with this letter and sign your name. Our first Lymie we will be helping is Cheryl Eibert and the following are links to her Senators

http://www.rubio.senate.gov/public/ , http://www.billnelson.senate.gov/

In the subject line, be consistent, put– CHERYL EIBERT SSD CASE #7854191

Here is the letter to copy into your email:

Dear Senator,

I am writing on behalf of Cheryl Eibert and her disability claim. She is a facebook friend of mine within the context of the Lyme Disease community. I write on her behalf because she is extremely ill with Lyme Disease and multiple other related disorders. She cannot function due to this disease and has reached out to her community for assistance. I, myself, have Lyme Disease and know it’s devastating effects personally. I ask that you review her case and help her to quickly get approved for social security disability as she is facing homelessness and worsening of her diseases. She has no health insurance and truly needs this assistance. Her functioning is greatly impaired due to Lyme and related disorders and she cannot work due to this decline. Lyme disease is a multi-systemic infection that effects multiple systems in the body and makes functioning especially difficult in those who have had the disease for years, as is the case for Cheryl. The following are the ways she is unable to function in each category:

Marked restrictions to activities of daily living: 

Extreme Fatigue, unresolved by resting or sleeping for any amount of time, effects Cheryl’s ability to clean her home. Her house chores are often left undone due to fatigue, dizziness while standing, and arthritis of multiple joints which results in pain.

Cheryl’s ability to vacuum her home has diminished due to extreme low back, knee, and hip pain from Lyme disease

Sitting upright is no longer possible for any normal period of time due to the pain this causes her, which affects her abilities in most areas of daily living. This includes leaving her bedridden for most of the day.

Bending over, stooping and other activities are no longer possible for Cheryl due to extreme pain

 Marked restrictions to activities of social function:

Dizziness when attempting to communicate has made social interaction extremely difficult for her.

Cheryl has memory loss and this affects her ability to function in social conversation.

Cheryl often cannot leave her home due to Lyme disease, and this prohibits her from developing and maintaining normal or even limited social function with friends and loved ones.

Cheryl is often isolated because her ability to leave her home has diminished due to severe fatigue

Agitation and anger associated with Lyme disease have affected Cheryl’s relationships negatively

 Marked difficulties in maintaining concentration, persistance, and pace:

Cheryl’s ADD, dizziness, and Lyme disease has created marked decline in her ability  to concentrate. She forgets what she is saying in mid-sentence and often cannot finish a task or even a movie due to lack of ability to concentrate.

Extreme fatigue and pain prevent Cheryl from being able to complete tasks in a timely manner.

Repeated episodes of decompensation:

Cheryl worked as a house cleaner for many years, but now cannot even stand up long enough to do her own dishes. Her own home is now too much for her to keep up, as she can no longer bend or stoop, she gets extremely dizzy and fatigued within 10 minutes of starting. She used to be able to do these things consistently and now she has decompensated to the point of being mostly bed bound.

Thank you for your consideration,

Lisa Sikes

Lyme Advocate

Colon Cleansing 101: Enemas, Colemas, and Colonics, oh my!

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Clean your colon! All three of these methods use water to irrigate and cleanse the lower bowel or the large intestine which is referred to as colon (bowel) hydrotherapy (water therapy). The use of water irrigation for bowel cleansing is not new, it has been used as far back as ancient egypt and is even mentioned in the bible. Cleansing your colon can have many benefits, because it clears out the old before your body can absorb the toxins that it means to release. This can be very helpful in terms of detoxification, and can be a very effective remedy for constipation of any kind. Having daily healthy bowel movements is paramount for even a normal healthy person. For those of us with lyme disease or other maladies that are a source of toxins in our bodies, we must be ever more diligent in keeping the train moving 🙂 But going beyond healthy normal bowel movements into the realm of detoxification has been key in supporting my healing. I have been on “both ends” of colon hydrotherapy so to speak. I used to give treatments as a colon hydrotherapist, and I use water irrigation all the time in my own healing protocol. For me, I feel it reduces the load of toxins my body has to process, thereby lifting that burden and releasing extra energy into my system that my body can use to heal itself. And it simply makes me feel better.  I learned to do my first enema at the Ann Wigmore Institute in Puerto Rico. Ann Wigmore was a health pioneer who believed that disease resulted from two sources, 1. Over toxicity and 2. Lack of Nutrients. She left a legacy of health education in the form of cleansing and rebuilding the body using living foods and cleansing techniques such as colon hydrotherapy. At the institute we were encouraged to do daily enemas as part of our program, which I did. Along with the nutrient dense living foods, I felt a tremendous difference. I felt lighter, clearer, and healthier overall. I learned about auto intoxication that can occur when the bowel is sluggish and moving slower than it is supposed to. If your fecal matter is not expelled quickly your body can continue to reabsorb the toxins over and over until it is expelled. Once I began cleansing my colon and eating the living food diet, my bowels began to move every time I put a piece of food in my mouth! I had never had movements like that in my life. It definitely made for more energy, and a terrain that had a better chance of dealing with the lyme I was fighting. Since my time at Ann Wigmore I have used many different methods of colon cleansing. I often would get colonics myself, but the cost of doing colonics can be prohibitive. I spent my time at Ann Wigmore at the beginning of my journey with lyme disease, and thank God for that! Cleansing my colon has been one of the most effective ways to keep my system clean as well as helping me to reduce the intensity of symptoms from chronic lyme disease. There is a sense of relief that comes from these methods. I think everyone should have, at the least, an enema bag in their home. And we should all know how to utilize these ancient time tested methods for health! I believe in self sufficiency in healing, and for that reason the colema and enema are the front runners here.

The differences between the three therapies, and how to do them:

The Enema

enemabag

The enema is the simplest and least invasive of the colon hydrotherapies. For it you will need an enema bag, not the fleet bottle, but the red rubber bags that are reusable as they hold more water and can be used over and over. The fleet enema pale’s in comparasn to the true enema bag, but there are also disposable enema bag products. To do an enema heat up some distilled water until it is warm to your touch, not hot, be careful with this. Set up your area in the bathroom. I usually put down a towel and a pillow, and I hang my enema bag from the door know or a handle on a drawer. You want to hang it so it is high enough to flow well, but not too high that the pressure would be too great. Lay on your right side. Use a little bit of olive oil to lubricate your anus, and insert the tip of the tube gently. Once you have done this, prepare your self with a few deep breaths, and then use the clamp to release the flow of water. You can allow the flow to continue until you feel the first urge to defecate. You can then clamp down and let that sensation pass or if you need to release get up, remove the tube, and sit on the toilette. You repeat this process until the water in your bag is all gone. While on the toilette, you can do a little massage over your colon and some stretching to help with the release. I believe most walmarts and walgreens sell the enema bag. The cost of the enema bag is around 15.00. This is the most affordable of the three therapies.

The Colema

colema board
The colema board is right in the middle, better than an enema but not as good as a colonic. The beauty of the colema board is it is closer to a colonic than an enema in terms of how thorough a cleanse you receive from it. It also allows you to lay on a board over the toilette, so you can release as your colon is filled with water. Where with an enema you must get up and down, holding the water in so not to make a mess. Colema kits also allow you to get a good 5 gallons of water flushed through your colon, which is obviously more thorough than what an enema bag can hold. This is my preferred method for colon cleansing. http://www.colema.com/setup.html The cost of a colema board kit is approx 270.00, and well worth it!

The Colonic

colonic

To do a colonic you mustgo to a wellness center in your area to receive a treatment. There are open colonic systems and closed colonic systems. If you go to a colon therapist with a closed system, they will be with you the entire session regulating the machine and working with you. In this system you lay on a table and have a tube inserted in your anus, and your fecal matter will flow out through a clear tube. In an open system, there is a basin like “bed” you lay on and the tube that is inserted into your anus only allows water to come in, but it is so small that when you release your bowels, the fecal matter and water mixture flow around the tube out into the basin under your bum. This method allows you to be alone while receiving the therapy as you only need assistance in the beginning. I prefer the open system because of the privacy factor, and I felt with a closed system that I feared releasing because it could make a big mess. Both are great and have their pro’s and con’s. Colonics typically run from 50.00 dollars a session to 75.00. If cleansing your colon is to become a regular therapy for you the cost of colonics could prove prohibitive. Which is the purpose of this blog, to explain the choices for colon cleansing available to you. The picture is of an “open system” colonic unit.

 

Home Ozone for Lyme Disease: A powerhouse in need of our attention

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Disclaimer: I am not a medical doctor and am not suggesting anyone try this. This is for information purposes only, as I tell my story and battle with chronic lyme disease

ozonemachine

It started about two years ago for me, the stomach problems, which forced me to stop taking the antibiotics I had always relied on. I simply couldn’t take one more pill. I was nauseated constantly, had no appetite, developed heartburn and gastritis (which I have healed since which is for another post). This put me into research gear, which I never really leave, once again for an alternative to keep  the lyme at bay. I really had lost hope of becoming well at this point, but because of my involvement with our lyme community I have seen one to many people not treat, give up treating, and oh how much worse things can get! This is the fight for my life. I had known about ozone for many years, and about hyperbaric oxygen for that matter. But each modality was sooooo expensive, and therefore inaccessible to me. A friend of mine went to the Hitt clinic in Mexico for Chronic Fatigue syndrome with viral complications. During her time there a few things happened. One, she received intensive IV ozone autohemotherapy for 12 days, along with multiple other modalities. But ozone was the one that really, intuitionally, felt like the one to pay attention to. She had horrendous herxheimers from it, which if you know about lyme and other infections is a GREAT thing. She came home about 40 % better. She also met the brother of another Lymie who had gotten totally well by doing the Hitt clinic treatments, mainly ozone, high dose vitamin c, auto-urine injection, and possibly some amino acid therapy. I spoke with him, and he goes back a few times a year to do 3-5 days of ozone treatment as a booster, a pick me up. But he runs a company, is an activist, and travels all the time…so he is doing well. Yay. The problem at that time was financing, as I know this is the case for many people with lyme. My friend spent nearly 7000.00 dollars in 12 days. When she came home, she felt a lot better for a few months, but then began to decline due to lack of additional treatment. The man I spoke of did 4-5 weeks of the same type of treatment, quite a bit more than her, and that did it for him. He went from Lyme to better! Yes, it does happen. But of course, I am doing the math, and if 12 days costs 7000 (approx), then the five or more weeks I would need for lyme would simply be out of the question for me.

This is an important topic for all lymies I want to take a moment to address. Lyme requires constant, consistent effort in treatment regardless of the type. So I think the smartest way to look at our situation is through the lens of accessibility, both physical accessibility (distance, range, and ability to handle the treatment) and financial accessibility. After nearly 10 years with this disease I realized, If it is not accessible to you, you will not be able to complete/continue the treatments. It’s the same if the treatment is too toxic, i.e. antibiotics. We are often stuck in a state of limbo, where treatments may need be applied for 10 or more years, as in my case. We must be diligent in our personal responsibility to our bodies, minds, and spirits throughout these processes. Knowing our limits, but also pushing ourselves past them is a paradox we must develop discernment about because the truth with lyme is that it is a process of healing. There are no magic bullets, but if something could come close it is ozone. That is why we must be able to actually walk, for a while, the path we pick. And this is where home ozone therapy enters.

So IV ozone costs approximately 150 per treatment, which for lyme is needed minimum 2x per week for at least a year. That adds up to 14,400.00 dollars. And you may, probably will, need to continue on after that. Because of my situation which I share with so many of you, cost is very difficult for those of us living on disability (if we are even that lucky), which is the case for me. The ethical considerations as to why this particular treatment is being offered at such a rate is another topic all together.

Ok, back to home ozone therapy. This has basically been a miracle for me. I purchased my own equipment with the help of my boyfriend (God bless him for this and so much more). The cost of the unit and all the accessories including the sauna itself is approximately 2000.00 dollars from Promolife.com. There are other places to purchase an ozone unit from, but do not be fooled into buying one of the cheap water ozonaters, they are useless for our purposes. I started my treatments on February 1st of 2012. I came off antibiotics at that time, and in the past have only been able to stay off of antibiotics for a month or two at a time. The most I ever went, even while applying other treatments, was 6 months and then a serious decline and/or flare would begin. The pain would become unbearable, and I would succumb to another “season” of antibiotics. This time, it is sticking! So happy to say. I have not needed any antibiotics since the day I began my ozone treatments and it is nearly a year. I try to wait 6 months into trying a new therapy before reporting it on my blog, because so many things do and will fail. But like anything else in life it is fail 5 times, succeed once. I am excited to express this joy of being free of constant toxic antibiotics with my fellow lymies. It is a freedom hard won. Now lets get into the treatments, what they are, how to do them.

There are a few different ways to get ozone into the body, however it is UNSAFE to breathe. Ozone is a gas, an atomically charged form of pure oxygen. You hear about the “ozone layer”, but this is medical ozone for application to the human body. It is a highly antibacterial, antifungal, and antiviral element. In the comfort of my own home I do the following treatments:

Ozone steam saunas – This must be done with your face outside the sauna because you CANNOT breath ozone in, but there is a special sauna I use where my head sticks out

Ozone ear insulflations- letting the ozone go directly into the ear canal at a very low flow rate

Ozone vaginal insulflations- letting ozone flow into the vagina, where it is picked up by the lymphatic system and carried into the rest of the body

Ozone rectal insulflations- ozonating the rectum directly, but a colonic or enema must be done first to prepare

Ozonated water on an empty stomach- ozonating the water and drinking it on an empty stomach is simple and very helpful

How often? 

For me, I started out doing saunas a few times a week with doing ears directly afterwards. I am now working on doing at least five days a week of ozone treatments, this did take nearly a year as there are significant herx reactions to the treatments just like with any other effective treatments. The beautiful thing about the sauna is that you are getting a heaping dose of ozone directly through the largest organ of the body, the skin, while at the same time sweating out the toxins from the dying lyme, so there is a rejuvanetive quality to the treatment even though it is also intense. The other benefit is that in my mind, I know ozone is non toxic to my body (at appropriate levels), so I am not adding insult to injury so to speak. I always feared the herx reactions with antibiotics, because I know the killing off the lyme was causing a lot of the pain and discomfort of the herx, but the element of feeling poisoned or toxic from the drugs themselves was always there. This is avoided all-together with ozone.

I do ear insulflations every time I do a sauna because the lyme likes to run to where they are safe. If I do only my body they will show up in my brain, so I do ears every time to get both major areas. This system has worked well for me. Currently I do a morning glass of ozonated water, then a sauna, then ears on as many mornings as I possibly can.

What equipment is needed?

1. An oxygen source, i.e. oxygen tank or oxygen concentrator, if the ozone unit does not require an oxygen source you know NOT to get it….tank vs. concentrator, there are some differences to be noted..tank allows lower flow rates for ears, concentrator allows convenience and never having to refill. Concentrator is more expensive short term, tank is more work but allows lower flow rates which becomes important.

2. An Ozone generator, again it must require an oxygen source, but there are many companies that sell them. I used promolife.com and am extremely happy with them and the unit. It comes with a five year warrantee . And you can get everything but the fan on this list from them

3. A steam sauna with a hole for your head!! This picture is of the one I use, the cheaper tent sauna, and it works perfectly!!

4. Water bubbler

steam2

5. humidifier

6. Stethescope for ear insulflations

7.  A fan to blow on your face while doing the sauna, both for cooling you and blowing the ozone away from your face so you do not breath it in.

8. If you get an oxygen tank, you will need a pediatric flow regulator

What else?

You need to understand the limits, both high and low, of gamma (measurements of ozone concentration). The lower limit is 20 gamma and the upper limit is 70 gamma. Above the high limit, it can be caustic to the body, and below the lower limit it is considered inactive. So most treatments I do are between 20 and 70 gamma. However, when ozonating water the gamma can be high because the water cannot be over-ozonated as a medium. I use lower gamma for things like ear/vaginal insulflations. There is a learning curve when beginning the ozone treatments. It takes much more effort at the beginning than it does later when you have learned the terms, familiarized yourself with the equipment, and found a comfortable routine. A lot of people say to me, well I’m not technical and I don’t understand this stuff…My advice, LEARN to be. It really is not very technical, it is simply foreign. And no one will care as much about your health as you ever will, so don’t be afraid to learn something new.

Supplementing essential fatty oils is a must while doing ozone because of the drying effects it can have. However it doesn’t have to be extreme at all, just start taking some cod oil or other efa’s. And Dr. Saul Pressman recommends a product called concentrace, to replace any minerals lost during sauna sweating. I admit, I haven’t done this step yet, but plan on it. And of course drink lots of water, always.

As you can see, the cost of buying yourself the equipment is totally worth it when you compare it to trying to pay someone else to do it for you, not that I wouldn’t love to do the IV’s, but this is a great and highly effective alternative. Plus you get to do your treatments when you feel comfortable doing them, in the comfort of your personal space. Freedom and self reliance in treatment of chronic illness create positive feelings of self worth and value for your life, these are very important factors in the healing process, at least in my discoveries.

While there are many resources out there that sell the ozone set up, please let promolife know that Lisa sent you if you do in fact decide to go through them. I get a referal fee which is much needed. Thank you.

Resources:

http://www.promolife.com/idevaffiliate/idevaffiliate.php?

id=411http://www.youtube.com/feed/UCdO9rmQYsM1KswO6GDvb2Lg

http://www.o3center.org/Articles/TheStoryofOzone.html

Do It Anyway- A Mantra For the Chronically Ill

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We may be down, but we are NOT out! Living with a chronic illness can be limiting in many ways, but adjusting to those new limitations and having a solid understanding of what you CAN do is really important. Even if you know you can only be active for 4 hours a day, that should serve as the basis for planning your days.. The biggest pittfal to this way of thinking is comparing yourself with others energy or abilities. That is not your reality and is not helpful. Base your life on your abilities, not societies expectations. Because even if you touch one life with your time or simply make a connection during your active 4 hours, it is better than nothing. Set a goal for yourself, and work on it each day as much as you can. When we go, our life’s work will not be measured against another persons, it will be measured against the truth of our own Soul. So don’t give up, and DO IT ANYWAY!

An example of how this mantra can help you is when your internal voice goes negative on you- “I don’t feel good” say mantra, “do it anyway”….apply this anytime your pain body tries to gain control, and you will be very happy with what you will accomplish!

Mother Teresa’s Anyway Poem

People are often unreasonable, illogical and self centered;
Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.

If you are successful, you will win some false friends and some true enemies;
Succeed anyway.

If you are honest and frank, people may cheat you;
Be honest and frank anyway.

What you spend years building, someone could destroy overnight;
Build anyway.

If you find serenity and happiness, they may be jealous;
Be happy anyway.

The good you do today, people will often forget tomorrow;
Do good anyway.

Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.

You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.

The Blue Butterfly: Shamanism for lyme disease, a story

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OLYMPUS DIGITAL CAMERA I never thought Lyme Disease would lead me to the Amazon Rain Forest, but in fact it did. I Journeyed to visit a Shuar Medicine Man named Kiap Uyunkar, meaning black jaguar healer. That was his Shuar name, but we all called him Juan. As if my 7 years on the path in search of healing hadn’t taken me to outrageous places already, both in the world as well as in my soul.

My mother, who so graciously funded this expedition, said to me that she believed in the ability of the earth and the plants to heal the body. She also has a great faith in her heart about miracles. She told me about a movie called “The Blue Butterfly”, and that the boy in the film went to the amazon looking for the Blue Morpho as his last wish, he had a terminal brain tumor. His search ended in the total and complete healing of his tumor, it was a true story.I hadn’t seen it. So as far as Shamanism goes, that was my Mom’s frame of reference. I, however, have been more deeply looking at esoteric healings for quite some time, given to the lack of cure western medicine has provided. It is also my spiritual path. So with Mom funding the trip, I was on my way in search of healing.

I knew the travelling would be hard and that the journey itself would require deep internal and physical strength and an open channel of willingness on my part. One of the principle plant medicines used by Shamans of the Amazon is Ayahuasca. I had had one previous experience with this medicine and it is intense to say the least. So with all of this ahead of me, I knew my previous spiritual disciplines and practices would play a major role, and that I would have to make use of all of my personal power to overcome this disease.

As I boarded the plane for Ecuador my heart and mind were filled with excitement and fear and I employed my faith to enter into the deep unknown. I felt Alive, really alive to be embarquing on such an incredible journey. We arrived at the hotel in Quito with my fellow group of travellers, and were to be there two days before  heading to the jungle. We all exchanged stories of our purpose for being there and started to coalesce as a group. It was exciting. Then as I was walking to the cafe, I saw Juan and instantly recognised that he was our Shaman, in fact I felt an instant soul connection with him as if recognizing an old friend. His eyes were filled with light and we hugged. I employed my beginner level spanish and said, “mucho gusto”. I could tell instantly that he was a being of light because he simply radiated. I felt at ease that I was in the right place, that my heart had led me down the right path, and that I had a profound journey ahead of me.

The next day we headed out, Juan said a prayer to keep us protected on our 6 hour journey to the Amazon. We all squeezed into the transport van and began our new adventure. We stopped to see Cotopaxi, a breathtaking volcano that is 20,000 ft high. Ecuador has many active volcanoes. In fact, everything about it felt alive.

The earth was wildly alive with a living force that filled me up, and even the hearts of the people were alive and I could feel their heart centeredness. I had never seen such loving men with open hearts that exuded true masculinity. As we neared our destination it began raining, and not the kind of rain I’m used to, it was sheets of rain. We stopped to pick up our rubber boots, that were a total Godsend the entire time, and by the time we reached camp it was well into the darkness of night. We were greeted by Juan’s family and everyone helped the “gringos” get our bags to the hut, it was really a hut.

I was overwhelmed at the reality of living in the jungle, although admitedly exhillerated. The bugs were abundant, and I found my way to my bed which was minimal. I was disoriented and going through a wild stream of emotions, but still the excitement outweighed my fears about roughing it. Little did I know that that would be the easiest thing about the next 10 days. We would begin our ceremonies in two days.

The next day we acclimated, we talked, and Juan delivered the first of many different kinds of medicines. It was a tea concocted of 9 different plants he went out into the jungle to pick freshly that morning. It was boiled down and made in a 5 gallon stainless steal pot. He started to talk to us about the purpose of the tea and how to take it, it was a purgative mixture that worked through making you sweat and urinate profusely. It was to begin cleansing us of our impurities before our ayahuasca ceremonies. He insisted we must drink as much as we can, cup after cup, and to continue to sweat out the poisons in our bodies. “Very important” he said, “keep drinking and purify!” I must have drank 20 cups that day, and I felt exhausted, both from travel and from the cleansing effects. God knows I was toxic with all the pills I had been taking for years, everything from antibiotics to painkillers, and then of course the toxins that lyme produces, they were all coming out. I zombied my way through dinner that night and went to sleep.

Juan was already teaching me so much about nature and life. They had cut down fresh trees that would burn for the next ten days because they burned only on the inside. One log had been a home to hundreds of “hormigas” (ants) and I said, “how will this be ok”? I mean it was right in our “living room”. Juan insisted, “no, they are our family” and on the hole out of which they poured he placed his hand. He left it there and allowed his family to run all over him. Then he grabbed my hand and pulled me to the log I had made my mind up to avoid, but something about seeing him do it and not have any fear transferred to me. I knew what he was trying to teach me, and I let him place my hand on the grand central station of ants. I felt calm and I think exuding that calmness had an effect on the ants, they could feel it and most of them curtiously walked around my hand, although a few decided to explore the new territory. This was my first lesson from him showing me that the Mother, our Earth, is our family and that there is an interconnectedness we share with her and all living beings.

Juan was born in the jungle, and this interconnectedness was his way of life. He was born to walk the path of the Healer, the Doctor of his tribe. In Shuar they call him an “Uwishin” which means doctor. In fact he told me that before he even had breast milk after birth, he was given the sacred medicine of ayahuasca. He was a man that I could see had deep deep wisdom, and I felt honored to be learning from him. His tribe’s direct lineage of teachings went back 100,000 years, from the Elders to the Young, generation after generation. Unfortunately he seemed to be one of the last to be carrying on the tradition in it’s original form.

Ayahuasca is a sacred brew that has been used by shamans of many cultures in south america for thousands of years. It is an intelligent medicine that helps you to face yourself, your fears, and your internal world. Physical healings of miraculous quality are known to take place when people ingest the medicine. These claims are what peaked my serious interest about the brew, although I had heard stories from many friends over the years about the spiritual process of taking the medicine.

I found little to no information on the internet about ayahuasca and lyme disease. This makes sense because they don’t have lyme in South America, and it is a relatively new illness even where it is epidemic. Western medicine has offered treatment for the chronic form of lyme, from which I suffer, but has delivered a cure to only a small few. So when I found Juan and heard that he had experience with several lyme patients over the past ten years, I knew I had to explore it further. Juan had treated exactly four lyme patients, and all had recovered a good part of their health from his treatments, however none had been cured. This was something Juan was not aware of until I brought it to his attention, and he looked further into the nature of the disease and why it relapses.

During my assessment with Juan he explained that they did have the disease in his culture, but it was isolated to the animal population. In Shuar it was called “Muah”. He told me he had spoken with other doctors before I came to inquire more about it, and had used his visionary abilities to gain a deeper knowledge of the disease. What he saw was that lyme worked as a male and female energy in the body. When the male aspect was active in the body, the feminine would be asleep and vice versa.They worked together. This allowed it to survive almost any treatment and explained why lyme relapses so often. That the bacteria had a protein coating around it that kept it safe from medicines intended to kill it. All of this concurred with what I already knew about lyme. He said the ayahuasca would dissolve the protein coating, but that it would not kill the bacteria itself. That to truly cure the disease, it must be a continuous treatment over many months in six day cycles. Six days on the ayahuasca and six days on herbal antibiotics. He told me that lyme is harder to cure than cancer, but that it is curable. He emphasized, “it is curable, not incurable”. This gave me a lot of hope, although I knew my two weeks in the jungle with him would not be enough to affect a cure, and that this would be the fight of my life. He talked with me of working together to discover the true cure, and that I could stay longer to work with him.

The day of our first ceremony arrived and we all anticipated nightfall. The ceremonies are performed at night in Juan’s tradition, in many shamanic traditions actually. Because it is a visionary medicine, the backdrop of a night sky makes the external world less important and allows you to go more deeply inside. That is where the healing takes place, inside yourself.

That afternoon he took me aside and I began the first of my initiations. We sat side by side in the medicine circle, with the Pestaza river rushing endlessly behind us. Until that moment, I had seen Juan as a lighthearted spirit filled with wisdom. But now it was time to be serious. He began to center himself and his internal power became evident. He held a white bottle of  liquid tobacco and began showing me what to do with it. “Tobacco is a sacred plant, very very sacred to my people”. He demonstrated the ritual to me, cupping his hand and stabalizing the liquid in his palm. He moved slowly and lifted his palm to his left nostril, snorting the liquid up one side and allowing it to settle at the back of his throat. He leaned forward letting it come out the other side. It reminded me of the neti pot that Indians use to clean the nasal cavity, which I had done many times. But as I took my first snort, I realized, this was not the same thing. The liquid stung and a burned as it hit the walls of my nose. I began to gag violently and mucous loosened from all of my passages. My ears opened, my vision became sharper, and then he told me to go lay down and rest for the ceremony.

 

Feeling Good and Sending Out Hope!

I have been feeling pretty good lately, and just wanted to post an update to spread hope. Its more often that you read about how bad someone is doing with lyme than not, so I want to make a real effort here just to send out the message that you CAN feel GOOD. I have carved out my own path on the road of lyme disease, and for the past few months I have been feeling much better. This week I was able to  work four days! I even got my first paycheck in about five years. It’s a super small one, but still, yay.  Just two months ago I felt like I was on my death bed, and I’m not saying my current state is permanent, but I have learned to FULLY live when you get the gift of energy. So that’s what Im doing..living. It took about a month and a half of being back on my doxy protocol, combined with colloidal silver this time, to really start feeling better. For those of you who are interested, I am including a complete list of my current protocol, which is keeping me well above 70%, for now anyway, things can always change with lyme.

My Treatment protocol:

100 mg doxycycline 2x daily

2 nystatin 2x daily (keeps me yeast free without toxic effects of diflucan)

T3, bio-identical thyroid replacement

Bee venom therapy

colloidal silver, about three tablespoons a day

probiotic therapy, two supplements and yogurt daily

Palliative Care (also very important for quality of life!):

Darvocet (for pain, I have found it to be the best choice, mild but effective)

robaxin (for muscle spasms, as needed)

xanax (to sleep at night)

I think the key to the “lyme climb” is consistency and persistence. If one thing doesn’t work either rethink it or try something else, but DON’T give up. For example, when I started on doxycycline, my doc put me on 300-400 mg a day, and I just couldn’t handle it, and that is how I finally discovered the lower doses over long periods of time, and that is what worked for me.  It is super important to be doing something at all times for the lyme, you just have to find what is right for you. The times I am sickest is when I am taking nothing at all.

Think about palliative care as well, it is a big consideration given the agony lyme disease causes. For years I toughed it out, and the pain just wore me down, making me very depressed. I have used antidepressants for periods of time as well, I only say this here to say they are simply a tool that can help at certain points in time. Also make sure you are taking care of your emotional and spiritual bodies. This is probably more important than anything, as the root cause of all disease is at those levels. Meditation has been a real transformational tool that has helped me in more ways than I can say. Find ways to internal happiness that don’t require the body to be perfect!  http://www.ananda.org/meditation/learn/technique.html

Social Security Disability for Lyme Disease: A how to guide

Not only am I a lyme disease sufferer, but I am also a trained social worker. Because of this, I understand both sides of the coin, and have learned (the hard way over time) how to navigate the system. Life has created a very unique path for me to walk and I would like to share my knowledge with those of you who are financially desolate, unable to work due to lyme disease, and having a hard time navigating the system.

A quick look at my path to SSD (Social Security Disability):

First of all, you should know, it took me four years to get approved for SSD. It is a lengthy process and you WILL be denied the first time you apply. Do not take this personally or let it bring you down in any way. It has nothing to do with your worthiness. If you have lyme and you cannot work, you are eligible for SSD and Medicare, it is just that you have to be persistent and go through the hoops the system has created. On top of that you need to have a medical doctor you can trust who can and will document your case, the best bet is to have a LLMD (Lyme Literate Medical Doctor).

When I first applied, I was denied and gave up. I felt that I must not deserve it. During that time I was in Georgia receiving IV antibiotic treatment from a very compassionate doctor. I stopped by a disability advocate office just to ask a few questions. It was, ironically, a social worker (this was before I became one) who sat me down and explained the process to me step by step, including the obstacles I would face. She told me that unless you are blind or a quadrapelegic, you will be denied your first time, and maybe even through your appeals. Once you are denied the first time you have 60 days to appeal the decision. I was denied 3 times, and that is the magic number. On my third denial I contacted a lawyer to represent me, I found out that this is sometimes the only way to get through the red tap. The lawyers who take on disability cases only take a percentage of your back pay, they require no money paid up front. Once I got to this point, I received a letter from the court hearing office informing me that because we were “short” on judges in Nevada that I would be waiting 24 months to get a hearing. At this point I had sold my home and spent all of the money I had on treatments, but was still getting worse. I was desperate, so I wrote everyone I knew and asked if they would contact my senators (Reid and Ensign at the time) about my case. There was no way I could have held out another 2 years just for a decision, I needed health care and income. My mother also wrote to the senators and contacted their offices. Within three days I got a call from Harry Reid’s office saying they received over 130 emails on my behalf (Thank you to all those people!) and that they would be assigning me an advocate and helping me with my case. I got a court hearing within 2 months! It was a fight, a long hard one on top of the fight for my life, but in the end I won. I hope my story inspires you to keep fighting and pursuing this. While it is not much money, it comes with health insurance and has been a huge blessing that has helped me get a lot better and survive.

Being that lyme is totally misunderstood by doctors just for us to get treatment, the path to get disability income and health care is even more difficult. Some people with lyme can work. And I believe you should if you can. But when the disease becomes too overwhelming, this is a solid alternative that can provide income and health insurance. I am an advocate for all lyme patients because I know first hand it’s devastating effects.

Something you should know about SSD is that it is NOT welfare! It is an insurance policy that you pay into while you are working. So if you become ill after working in the system, you are entitled to benefits!

Steps to take:

1. Go to your local social security office and ask for an application for SSD and Medicare. Or visit them online and do the application there: http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/326

2. Make sure to be going to a doctor that is knowledgeable of lyme, and get all of your records (from all the docs you’ve been to). Keep track of all the things you do to try and get better, and document the abilities you’ve lost.

3. Turn your completed application in: wait for your answer which will most likely be a NO the first and maybe even through your third appeal. If you get it on the first try, congrats, you are lucky!

4. Appeal, Appeal, Appeal!

5. Get an attorney that specializes in SSD cases in your area. They take a certain percentage of your back pay, if you are approved. Otherwise you pay nothing.

6. At your hearing: state your case and fight for yourself, bring family members in, and find ways of measuring how lyme has affected you.

7. Keep your head up, and know that there is hope out there for a cure! Meanwhile, be willing to accept help from all directions and develop coping mechanisms that allow you to live your life!

*************************************************************************************************

When Filing For Disability by Jennifer Pitts, Leslie Wermers, and Anna Willo Hart

These are notes compiled from 3 different people on applying for disability – notes written by Jennifer Pitts, Leslie Wermers (may she rest in peace), and myself, Anna Willo Hart.  As long as this writing is kept in its original form, anyone is welcome to share it with people who need this information!  I’ve been told by several friends that this was the first bit on disability that didn’t make their heads want to spin off; I take that as a good sign! lol!

Namaste’

Willo


When filing for disability, determination is usually not based on a diagnosis but is based on one’s ability to function. It is also not based on the doctor’s opinion that one is disabled, but rather on the documentation of one’s ability to function, number of systems affected, number of symptoms, severity of symptoms (etc), that is in one’s file.

The SSA has what is called the Adult List of Impairments. Under 14.00 (Immune System Disorders) you will find Lyme disease listed under 14.09 – Inflammatory Arthritis.

The spectrum of inflammatory arthritis includes a vast array of disorders that differ in cause, course, and outcome. Clinically, inflammation of major peripheral joints may be the dominant manifestation causing difficulties with ambulation or fine and gross movements; there may be joint pain, swelling, and tenderness. The arthritis may affect other joints, or cause limitation in ambulation or in the performance of fine and gross movements. However, in combination with extra-articular features, including constitutional symptoms or signs (severe fatigue, fever, malaise, involuntary weight loss), inflammatory arthritis may result in an extreme limitation.
http://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm

Your reason of disability is how these diseases have disabled the body as a whole. You are disabled because: fatigue, neuropathy, seizures, fibromyalgia like pain, parkinson’s like tremors, ataxia, tummy troubles, short term memory problems, muscle malfunction, joint pain or stiffness, headaches, palsy, brain fog, weakness or paralysis, insomnia, impaired cognition, and so on. If there are mental health aspects, include those too — depression, anxiety, panic, PTSD, mood swings, distorted memory, crying for no reason, rage, etc..

Look from head to toe and describe WHY you can’t function. Not: because I have Lyme & co-infections, I can’t work. That’s a guaranteed denial.

Review the list of impairments and go into them further. Look up symptom lists of Lyme and TBIs in general and mark down every little thing you suffer from. Leave nothing out. Two of our favourite symptom lists are from from PA Lyme’s “The Basics” which is available online (google “PALyme The Basics” without the quotations to find the URL to download the PDF file) and Dr. James Schaller’s Symptom Lists: http://www.amazon.com/Checklists-Bartonella-Babesia-Lyme-Disease/dp/0984088954/ref=sr_1_1?ie=UTF8&qid=1376519537&sr=8-1&keywords=Dr+James+Schaller

The diseases are the causative factor, but, the most important part of disability will be affected by the impairments listed.

Here is a good link that takes you through the process from the viewpoint of the SSA:
http://www.socialsecurity.gov/dibplan/dqualify.htm
I recommend that anyone seeking disability benefits purchase the Insurance Issue of Lyme Times from LymeDisease.Org (formerly) CALDA for $10.

http://www.lymedisease.org/lyme_times/issues/lyme_times_issues_insurance.html

It is HIGHLY valuable in explaining how the disability process works with Lyme, includes many form letters for your use and is all around brilliant.

I also suggest purchasing (or checking out from the library) the Nolo’s Guide to Social Security Disability Getting & Keeping Your Benefits:  http://www.nolo.com/product.cfm/objectID/03C58536-EEDE-41D7-90FC0E4DAA51B476/213/

You should absolutely download the: Worksheets from the Disability Workbook ($5)
(http://www.disabilityfacts.com/Bookstore/e-book_Form.html — close to the bottom of the page — the full workbook can be bought for $20)

It will make the process so much easier, especially for the brain fogged like us. 🙂

Include all of the worksheets, if this is an appeal don’t forget your appeal letter (Nolo should give a good example as does the Lyme Times Insurance Issue) and also get the SSA into your medical record — send the worksheets to your doctor with a note that they need to be sent to the SSA when medical records are requested.

You should also consider the:

Disability Evaluation in a Nutshell the 3 minute guide to effective medical reports.
(http://www.disabilityfacts.com/Bookstore/Booklist.html — it’s targeted towards the physician. $5)

You will want to include peer reviewed information about Late Stage/Chronic Lyme.

Examples:

Relapse/Persistence of Lyme Disease Despite Antibiotic Therapy

http://www.lymeinfo.net/medical/LDPersist.pdf

Seronegativity in Lyme borreliosis and Other Spirochetal Infections

http://www.lymeinfo.net/medical/LDSeronegativity.pdf

Some other great info to include can be found on this LymeInfo page: http://www.lymeinfo.net/neuropsych.html (lots of peer reviewed literature there!)

Include the CT Attny General’s finding on the IDSA 2006 guidelines:

http://www.lymemed.nl/discussie/point&counterpoint.pdf

http://www.fda.gov/medbull/summer99/Lyme.html

http://www.ilads.org/cdc_paper.htm
http://www.guideline.gov/summary/summary.aspx?doc_id=4836&nbr=3481&string=lyme

http://www.columbia-lyme.org/flatp/breaknewsfull.html#1-05
Add the fact that the IDSA was forced to review their guidelines.

Add any information that is pertinent to you, information the people looking over your case should know: the Poughkeepsie Journal articles on Lyme, the newer studies about Rhesus Monkeys and Biofilms, for example.

It is known that 70% of cases are denied via initial application, but a very high proportion of them get approved when it goes before an administrative law judge (I think after 2 appeals).

In the documentation you send — whether it’s an appeal or the first application — as a cover page, list the items that you are enclosing.

For example —

*Social Security Questionnaire
*Worksheets from the disability workbook (list individually)
*Residual Functional Capacity Questionnaire
*List of doctors (the worksheets have those)
*ILADS Guide to Lyme
*ILADS Guide to Lyme for Psychiatrists (http://www.ilads.org/PsychiatristBrochure.pdf)
*ILADS’ Evidence-based guidelines for the management of Lyme disease (http://www.guideline.gov/summary/pdf.aspx?doc_id=4836&stat=1&string=lyme)
*Findings of Connecticut Attorney General regarding the multiple conflicts of interest and flaws of the IDSA Guidelines
*Letters from Friends and/or coworkers (insert how many)
*Medical records from xyz doctors that back up the individual troubles (sleeping, pain, neuro, gastro, etc)
*Any educational materials you want to include

Also, if they are unable to obtain your doctor’s information, or if they have any questions, ask that they contact you directly before making a final determination on the claim.

Call your caseworker to check status. Be very friendly — even if they lose something. It does absolutely no good to get angry, in fact that could be damaging to your case.

When filling out worksheets or applications, make sure to emphasize what you can no longer do — NOT the work-arounds you’ve put in place.

Examples:

“I can no longer walk more than 2 blocks unassisted,” rather than, “I have to use a cane to walk more than 2 blocks.”

Or: “I have gotten lost a number of times on familiar routes,” instead of, “I bought a GPS to help me find my way home.”

Some other great links to peruse:

http://www.cfids-me.org/disinissues/index.html#essays

..especially the following link, though the above worksheets captured much of the information. It can be edited as you need in order based on what information you have. VERY LONG but good:

http://www.cfids-me.org/socsec.html

Others:

http://www.disabilitysecrets.com/social-security-disability-lyme-disease.html

http://www.disabilityfacts.com/Bookstore/Booklist.html

http://www.lymediseaseassociation.org/SSI.html

http://www.disabilityfacts.com/faqs.html
Okay, we know that’s lots of random info.. but we hope there’s something helpful in here for everyone who needs it!

Disability seems like this huge task to overcome, but if you sit down with the right worksheets this job can become a lot easier.

Good luck!!

Les, Jenn, and Willo