Sunday, August 17, 2008

Day 1

Hello, and welcome to my blog. After many years of fighting the Lyme bug inside me, I have decided to finally start posting some of the information that I have learned over the years.  I have educated myself over the years, and I have spent countless hours researching for solutions and hoping and praying I would find answers.

I am happy to report that after many years, and a lot of hard work, and through trial and error, today, minus a back injury, I live a fairly normal life. I certainly wouldn't call it perfect, but I work, earn a living, and can do much of the same things that my non - infected neighbors can do. 

If I am to emphasize anything here, it's that Lyme disease is in fact a journey. The road to wellness is a progression over months and even sometimes years.  You'll have a tendency to try something for a few weeks, maybe even a few months, and move on. I see it over and over again on the message boards.  But that's ok. That's how you will slowly formulate decisions, and come up with a plan. I can't tell you how many items I have come across, researched, moved on, only to come back and revisit maybe a year later.

In the posts that will follow, I hope you digest as if you were reading a book.  When your done, go back and read it again. The whole thing.  Some things will make sense to you, others won't. That's ok. What's important is that you read, and slowly start to formulate your own plan. Over time, you will become wiser, and with wisdom, wellness will eventually follow.

Lastly, Don't take anything that I write or anyone else says as an absolute.....good or bad. We all have different make ups. For example, if someone tells you that they tried supplement X, and it didn't work (a short comment like that is EXTREMELY common on the Internet), my first reaction is always:

What was the dose?
What was the frequency of that dose?
What was the source?
Quality of the source?
What other medications or supplements where you on?
at what frequency?
What are the effects of those?
Does anything you currently take inhibit or magnify the effects of supplement X?
What is your diet?
What do you drink all day?
How often?
What is the state of your body's organs?
Fully functioning?
What is your current pain status?
Inflammation?

and so on. You get the picture. Look at it this way.  One good stiff drink can put some lightweights on the floor, while not even affecting others. Some drunks are happy, while others are miserable.  There are SO many variables that go into an individuals reaction to a supplement, medication, therapy or diet.  I'm sure you can think of examples yourself. 

With this in mind, remember, when researching, look for many many reports of antidoctal evidence when something has not been formally studied. The web is full of junk, but full of really good morsels of information if you can sift through all the garbage. 

I hope that my sight can help those that seek help. I can only tell you what has worked for me, ad how I got here.  Please let me know if I can help in any way.

I plan on starting on what helped me the most, and making my way down to the smaller stuff. Good Luck. 

Thanks,
Noodlydoo

Saturday, August 16, 2008

Therapy #1: Attitude

Attitude?  Well, truth be told, what made me better is a cocktail of therapies. Health is like a meal, it takes many ingredients, some more than others, and often in a given order. You don't mix syrup with flower, eggs and water to make pancakes. 

You may think that's a silly example, but there is actually a tremendous amount of truth to it. To think that one thing is going to improve your health is a quick solution for failure. The first dozen therapies that I will talk about are all important. They all play an important role in getting your body functioning.

Your body is extremely complex. The immune system itself is made of all kinds of lymphocytes, T cells, etc etc. You have several components of blood (rbc's, wbc's, plasma and platelets). I mean just think about it for a second. Do you really think that there is a little pill out there that will be a cure all?

Your attitude will dictate what your willing to put up with, how hard you'll be willing to try something, with what persistence you will search for the solution.  

Things like stress can have a profound effect on your ability to heal, sleep, digest and so on. The list is long. Stress causes a sustained elevation of cortisol in your system. I won't get into it here, but know that there are thousands of articles on the effects of long term stress. 

I'll have lots of posts in the future about stress and attitude, but for the first post, just know that one of the most important, if not the most important ingredient in your quest to find good health is already within you. Check your attitude.  There is only one person that has your best interest in mind...and its you. You will always be your own best advocate.  Don't wait for someone else to fix you. Learn, absorb, learn, absorb and learn some more. 

Knowledge is power.

Friday, August 15, 2008

Therapy #2: Mild Hyperbaric Oxygen Therapy******************************************************************************

OK. For me, this has been the most effective treatment, without a doubt. Now let me throw in a caveat, it only works so well for me because I give myself treatments religiously, and I also am doing many other complimentary therapies that give mhbot (mild hyperbaric oxygen therapy) the biggest bang for the buck.

Having said that, of all the therapies I do, I would rate this one at the top of my list. Is it a silver bullet? Well, let me put it this way. Flour is the largest ingredient for pancakes. Without it, you have something closer to scrambled eggs. But just flour doesn't make a pancake either. Get the point?

My mhbot use started about 6 years ago. I had been on antibiotics (abx) for several years and had been slowly improving over the years. It was very much two steps forward, one step back. But, over time, it was definitely a positive progression. I had only been doing orals and had been on several different kinds over the years.

Finally, just after the second year, my gut started to give out on me. Candida was fast becoming systemic in my system, and I started to get these sharp and deep pains within my lower abdomen. I knew I was headed for IBS, Chrohns, Ulcerative Colitis or some other awful disease. I am a huge proponent of not trading one problem for another. It was a scary and difficult decision for me. Scary, because I felt so bad without the antibiotics that I knew I would not be capable of work. If I couldn't work, I couldn't pay my mortgage or have a life. I was certain my marriage would eventually fail, and I would, at some point, become destitute. Difficult because I new I had little choice but to find another option other than the abx.

My mother once told me: "there are no problems, only solutions". I actually believe that. That's why I say knowledge is power. For every action out there, I do believe there is an equal and opposite reaction. The question is, can you find or discover it? So, with that in mind, I set out to find something that would be as powerful as abx, but with fewer side effects.

I had been reading like mad on the message boards, and of course, it is through others that I had heard about mhbot and regular hbot. I read a very intriguing study done in Texas (I will post it below) about how Dr. Fife at Texas A&M put 91 patients who had failed abx therapy (difficult patients to treat) into an oxygen chamber at 2.36 ata which is the equivalent of scuba diving down to 45 feet, but instead, breathing oxygen, not air.

There are three theory's surrounding hyperbaric oxygen. The first is that lyme simply does not like nor can it live in high oxygen concentrations. The second is (and has been shown in test tubes) that starting at around 12 feet of water, the pressure starts to kill off the cell wall. Third, its also been postulated that the flood of oxygen into the body, especially at lower pressures, is an immune system boosting treatment. There are arguments that deeper depths, such as done in this study, are actually immune suppressive.

Whatever the technical analysis is, the response was overwhelmingly positive for hyperbaric oxygen. So why doesn't everyone do it? Great question. I've got two answers. First, its really really expensive. Usually well north of $100 a treatment. Secondly, the effect appears to be transient. In my research, I came across lots of posts like this one:

A typical post on Lymenet about HBOT: this was pulled from WildCondor posted in May 2003 and still on the net:

Hi there!
I have done about 125 Hyperbaric treatments. They work awesome and I highly recommend them. Yes, they are extremely expensive ($150-225 per treatment) adds up to well over $24,00 not including lodging, food, and medications.It was so worth it though!It has to be done while on aggressive antibiotics like IV Zithromax and Bicillin and Flagyl, which was one of my combinations.


It also has to be done at 2.4 atm for 90 minutes twice a day. Once a day at 60 minutes did not work for me. It also has to be done in a monoplace, not multi place chamber. Many Lyme patients have used Multi place chambers (3 or more people in there and you breathe through a hood that leaks) including myself, and I got zero results from that.I will not do multi place chamber therapy again, it does not penetrate the skin and its annoying and uncomfortable and no where near as effective.

Monoplace chambers rule, your entire body is receiving 100% pure oxygen at 2.4 atm for 90 minutes twice a day and you herx your ass off. These treatments plus the heavy duty aggressive antibtioics brought me from 10% functioning to 65% functioning in less than a year and I have remained at this higher level ever since.
Breathing out of a canister wont do anything, dont waste your $$$.
I have a list of all the Hyperbaric Oxygen centers in the USA. Email me if you'd like info.



After reading dozens of self evaluations such as this one, I had actually given up on the idea of hyperbaric oxygen for obvious reasons. But then I came across a gentleman in Atlanta whom I started speaking with. He too in the past was vastly affected by lymes ravages, but seemed to be doing much better. His Secret: Oxygen and Heat. (I'll get to the heat in another post). Lance had built himself a full scale monoplace chamber. We're talking a round, welded steel structure. Lance, out of necessity, built himself a chamber that would normally cost $100,000 dollars. Wow.

I learned that lance had put himself in the chamber for months, but after feeling better, he realized that there were some downsides to repetitive deep dives. (and there are). He eventually came across a company called Oxyhealth that made mhbot bags that compressed to 1.3 ata, or roughly 10 feet of sea water. Lance starting using these bags instead of his home steel chamber, and by the time I caught up with him, had been doing it for years with great success.

Suddenly, I had hoped I found the solution. You see, Lyme, which you will learn if you continue to read this blog, has the ability to protect itself. It morphs itself into many forms. The dormant state where it rolls itself up into a ball is un-affected by abx, mhbot, rife and a whole host of other therapy's. So getting rid of lyme is practically impossible (in my humble opinion). But mhbot offers a way to control it. You kill a bunch of the active lyme with a dive, and since your doing shallow dives, you can continue to suppress the active lyme, or at least keep it at low levels, practically indefinately.

I wish I had found mhbot before abx therapy. But I didn't, so thats that. In any case, I did find it, and for me it has been the most useful tool by far. How do I know. Well, I have had to move several times and during those periods had no access to my chamber for several weeks. The process is the same. I'm usually good for about 10-14 days, and then like clockwork, my symptoms start coming back in force. The pain, sleep disturbance, fog, joint pain and the list goes on.

So for me its a no brainer. It works. It will not cure you over night. It takes time. You'll spend a hundred waking hours a year or more inside a tube (not fun), but it works. So in the end, I have to highly recommend it.

My next post will focus on which tube to buy, and the benefits and disadvantages of the current options. Lucky for you, there are really only two to consider. But first....Dr. Fife's study which I promised you:


Effects of Hyperbaric Oxygen Therapy On Lyme Diseaseby William P. Fife, Ph. D. 29 January 1998
The purpose of this study was to determine if hyperbaric oxygen therapy affected Lyme disease caused by the spirochete, Borrelia burgdorferi. The spirochete B. burgdorferi is a microaerophilic organism carried by the Deer tick (Ixodid) and transferred to humans and other mammals by its bite. Symptoms often begin by a bulls-eye rash and erythema migrans.


Symptoms may include pain in joints and muscles, sore throat, fever, swollen glands, and mental " fogginess". If not diagnosed within the first one or two months, the disease may become a chronic infection. At that time it apparently becomes sequestered in fibroblasts and other cells which, in turn appear to protect it against effective treatment by all known antibiotics so far tested. The disease is difficult to diagnose without serological findings and requires the skill of a highly qualified physician, experienced in treating this disease.

Rationale:It was shown by Austin that the spirochete could not survive if transferred in air to another host, but would survive if transferred in a gas mixture of 4% oxygen. This demonstrated that the spirochete could not survive in an oxygen partial pressure of 160-mm Hg (the partial pressure of oxygen in air), but could survive in a partial pressure of 30-mm Hg (which is the partial pressure of 4% oxygen at 1 atmosphere, absolute (ground level pressure). Therefore, it seems clear that a lethal level of oxygen for the spirochete falls somewhere between 30 mm Hg, and 160 mm Hg.

It also is known that while the inspired partial pressure of oxygen is approximately 160 mm Hg, at the tissue level, the partial pressure of oxygen normally is approximately 30-35 mm Hg. Thus, it would not be expected that breathing air at ground level would cause any damage to the spirochete. However, if the patient were placed in a hyperbaric chamber and the pressure increased to 2. 36 atmospheres, absolute (ata), the total barometric pressure would be 1794 mm Hg. If the patient were then to breathe pure oxygen the inspired partial pressure of oxygen would be 1794 mm Hg.

Inspired oxygen is diluted by carbon dioxide and water vapor in the alveoli, so that the arterial blood would be exposed to an oxygen partial pressure of approximately 1700-mm Hg, and the tissue oxygen would be between 200 and 300 mm Hg. This clearly would be above lethal oxygen levels for the spirochete since it is expected that oxygen normally would diffuse throughout all cells of the body. This partial pressure of oxygen can be safely achieved in a hyperbaric chamber, and the patients can tolerate this level for 90 minutes or longer quite successfully.

Protocol:This study was approved by the University Institutional Review Board. Subjects were selected from those referred by clinical physicians who were experienced in the treatment of Lyme disease. All subjects presented with a positive diagnosis of this disease according to the CDC criteria, including a positive Western blot serology of the proper bands.

All had failed intravenous antibiotics, and many were continuing to deteriorate even though still on various antibiotics. Subjects were given a briefing on the use of the hyperbaric chamber, including the risks, and signed a waiver and release in accordance with the Belmont Report. They were placed in the multiplace chamber and compressed to 2.36 ata, whereupon a plastic helmet was placed over the head and pure oxygen was administered. The oxygen flow pattern was such that the subject inspired 100% oxygen with each breath.

Subjects were able to communicate with the attendant in the chamber as well as with each other. Treatment duration was 60 minutes on oxygen, and in most instances the treatments were administered bid for 5 days followed by a two-day rest. Several different series were tried, ranging from 10 treatments to 30 treatments. One subject received 145 treatments over the course of 3 months.

Results:Ninety-one subjects completed a total of 1,995 hyperbaric oxygen treatments, although nine were eliminated later due to the presence of another medical problem not apparent during their treatments. These other medical problems were such things as babesiosis, ehrlichosis, hepatitis C, and previously unidentified neurological problems. Two subjects were eliminated due to the development of septicemia from IV catheters, and one because of recent breast cancer, although all three of them later showed an improvement of Lyme symptoms with hyperbaric oxygen administration.

Subject evaluation was carried out by an abbreviated questionnaire taken from a standard questionnaire used by several Lyme specialists as part of their evaluation. This questionnaire was designed so that zero reflected no symptoms, while ten reflected severe symptoms.

Although additional statistical evaluation still is being carried out, it appears that approximately 84.8% of those treated showed significant improvement by a decrease or elimination of symptoms. Only 12 subjects (13.1%) claimed no apparent benefit. Before treatment, the subjects had an average score of 114.12 (of a possible 270), and after treatment they averaged 49.27. This reduction of 64.85 points was statistically significant in a paired t-test (p=0.000).

The variability of the scores from patient-to-patient declined as well after the treatment series. The standard deviation of the scores was 56.00 before and 44.14 after treatment. The p-value of this reduction is 0.057 in a Fisher's F-test. Further, 58% of the respondents had score reduction of 41.86 points or more.

All except one of the 91 subjects developed severe Jarisch-Herxheimer reaction, usually appearing within the first 5 days of the beginning of hyperbaric oxygen treatment. In most cases, the Jarisch-Herxheimer reaction continued throughout the series of treatments, and in many instances continued for up to a month after the treatments were finished.

Most subjects then began to show major improvement that in some instances has continued for 8 months.

Disclaimer

Before I get started with any Therapy's that require money, please be advised (FULL DISCLOSURE) that I sell NOTHING. I am not a rep for any product, company, mfg or any else for that matter. Everything in this blog is simply my personal experience. Like anyone, I have found things that work for me, and things that don't. Some work better than others, and of course, I have my personal preferences. 

I will attempt to be objective as best I can, but some subjectivity based on my personal experiences will of course leak through. 

Thursday, August 14, 2008

mhbot (Mild Hyperbearic) Mfg's **************************************************************************************

OK, so maybe your thinking that you might want to look into home hyperbarics a little bit more. The professional chambers that dive down to 45-50+ feet will make you herx (a healing reaction, we will discuss later) at a much faster clip, and your recovery will be quicker. But as I stated above, its transient and expensive. So for any sustained therapy, unless your independently wealthy, your looking at a home unit.

The home units only go to 1.3 psi or about 10 feet. You'll need a script from your doctor to buy both the Gamow bag (chamber) and the oxygen concentrator, that will put about about 95% oxygen. (that's piped into the chamber and into a mask). Without getting super deep into details, you'll be breathing twenty something percent oxygen under pressure.

What will that do? flood your body with oxygen. I'll talk about the benefits in the next post.

So on to the manufacturers.  Mhbot was really a phoenix or born from Gamow bags. Gamow bags were and still are used for high altitude mountaineering.  When someone becomes ill with altitude sickness, they stick em in a Gamow bag, pressure it, and it has the same effect as bringing them down several thousand feet in altitude. (because the air is denser under pressure, thus more oxygen molicules per square liter of air). 

Well, it turns out that people starting using these Gamow bags for Autism, CP, lyme and other stuff. 

The first company that ran with this and is still in business is Oxyhealth.  Based in California, they have been manufacturing these bags for years and years, and have sold THOUSANDS. They have become not only popular for alternative medicine, but athletes have gotten into the mix as well. Many famous football players and others now use these bags just before a game for performance, or just after for recovery.

But I'm getting off track. Needless to say, Oxyhealth has been around for a long time, and builds a quality bag. It was my first bag (which I still own) and has served me well. The design is well thought out, and they have been in business long enough to work out any bugs in the engineering.

They produce three sizes. I started with the smallest chamber b/c of cost.  I won't lie, its very constricting inside. If you can afford one of the larger models, get it. If you panic in small confined spaces, also not the bag for you. (the small I mean). There is no getting around getting into one of these for the therapy, but the largest of the bags are in fact, large. In fact, they feel much bigger once inside than they do looking at it from the outside.

Reminds me of my Ford Fiesta in college. My friends called it the pregnant roller skate. But I have to tell you, although a small car, it had TONS of room inside. Not sure how that phenomenon works, but it does sometimes.

I really like Oxyhealth. After owning the bag for several years (like 3 or 4), some of the heat seals on the ports started to loosen. I gave Oxyhealth a call and they were aware that some of their bags were experiencing this issue. The bag was well out of warranty, but all I had to do was pay for shipping to California (about 30 bucks) and they resealed (using a new technology) and sent it back to me free of charge. WOW, that's taking care of the customer. They get my endorsement

But alas, I moved on and bought the second companies bag as well. Performance-hyperbarics came to market about two years ago and was built by a guy who lives in Hawaii. I purchased this second bag because I really wanted a larger bag to be able to move around in. The performance bag is less expensive as a comparably sized Oxyhealth bag, and it is a two bag system, a bag within a bag. The outer bag gets latched up, allow the inner bag to hold the pressure. Because of this, Performance has a higher rating (1.5 psi or about 17 feet of sea water) internationally, but only approved for 1.3 in the USA. 

I like both units, and both have their advantages and disadvantages.  I'll do a little quick compare for you. Certain features may be more or less important to different people. So lets have at it:

OxyHealth Performance
1. Max Pressure 1.3 1.5  (1.3 USA)
2. Price 12-22k 13k
3. Self Entry Yes InMyHumbleOpinion: NO
4. Self Exit Yes Yes with some effort
5. Zipper ease of use Easy Difficult
6. Controls Skimpy Awesome
7. Compressor  Good Better
8. Oxygen Concentrator N/A Very Nice
9. Customer Service Excellent Mixed Results
10. Weight Heavy Heaviest

So, I have both bags. I'm sure your asking yourself; which one does he use? Well, I use the performance bag now. The zipper is nightmare, even though I have waxed that thing over and over (wax is suppose to loosen the tension). And, even though performance says that you can do self entry, I think the practicality of that does not exist. There are straps on the outside, and I have my wife check those straps as the bag inflates to make sure they are not on a gauge or valve. In addition, reaching out to close up the airplane like belts would be a nightmare. 

However, after taking all that into consideration, one fact remains clear: the Performance bag, for the same price, is larger and can potentially dive deeper. I'm sorry, physics are physics, and if you want to build a bag that can withstand higher pressures, you are going to sacrifice some "luxuries". 

So what bag would I recommend? Well, if you live alone, or don't have access to have someone put you into the chamber. If you or someone else can pull close a rather nasty zipper that fights back, then you have to go with the Oxyhealth chamber. And its a good chamber. There are more of them, they are tested, and they have good service (or at least have provided me with good service in the past).  The OxyHealth chamber does everything you need it to do, and they build a quality product.

If you have  have someone that can put you into the chamber and close it up behind you, if you want more room for less money and can deal with the zipper, if potentially higher pressures are important to you (they are for me !!!), then Performance is the chamber you should buy. If I was single, I would never buy a performance chamber. But I'm not single, and its the one I choose to use.  How's that for a mixed endorsement!

These are only my observations. OxyHealth would say that higher pressures are dangerous (at least I think they would) and Performance would say that their zippers are fine (at least I think that's what they would say). I can only tell you what I've experienced. At the end of the day, I think that Performance probably has a chamber that will last longer, can go deeper, and thus provide me with a better recovery. I was not swooned by their customer service, but I have only interacted with them briefly.  ( I bought one of their used chambers that was only 3 months old, but Spencer was sure to tell me that it was now out of warranty and he seemed a bit peeved that I purchased one of his used ones instead of a new one. Given that OxyHealth had replaced and resealed a better part of the entire tube AFTER 4 years, you can see dis-taste with Performances "customer service". ) But hey, things change, and at the end of the day, given an extra pair of hands, I'd choose the performance chamber.

OK. I think that will bring us to our next post......Why Oxygen and what is it doing inside our bodies?