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Windrider (Stubborn)
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I had a few people PM me about my wife's illness, I wasn't quite sure how to respond. The I read the attached story. The attached link could be her story.... at least 4 of the same co-infections, the same isolation, the same limitations, most of the same severe symptoms.


As the writer says so eloquently: "She is going through a variety of different combinations of antibiotics; oral and intravenous, to see what combo is more efficient in getting rid of these bastards running amok in her body.
Sara has committed whole heartedly to this treatment and she is adamant about getting better and being able to get back to a normal life. She has not been able to work, or really have a functioning social life since she started getting really sick in late 2012 and she is longing to get back on track , to be part of something, to go to work, have colleagues and live a more normal life! Spending most part of every day feeling nauseous, fatigued, having memory loss, having seizures, being dizzy and just all together foggy and without any geist, well...that's not a life."


Thankfully, we've been blessed to have been able to afford the treatments....I honestly don't know how many/most get through this financially. (Think $7,000/4 weeks for IV antibiotics + deductibles + Lost wages + all the other things not covered by insurance because the CDC/Insurance companies are behind the research).


I never had any concept of how debilitating this disease could be....... and how little public knowledge there is of it. It's getting better, but there is much to learn and much progress needed. We feel good that the what they are learning from Ella's treatments will add to the bank of knowledge and maybe make it easier on someone else in the future, but selfishly, I hate she has to go thru this.


Thoughts, Prayers are always appreciated. If you know anyone else suffering thru this, please reach out to them.... I guarantee they will appreciate it.


https://www.youcaring.com/sara-culler-440127
 

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LenJ : "hate she has to go thru this". Totally feel that sentiment and can only offer my best wishes and thoughts and the wish that you two will soon get through this affliction. I think Ellie is stronger for having you there, you're a good man.
 

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My wife has chronic Lyme disease. She would have flare ups that put her in the hospital and we have been through far to many different doctors and nurses to bother keeping track. Multiple antibiotic treatments helped temporarily but symptoms would be back anywhere from one month to eight months later. At one point she was diagnosed with fibromyalgia and was put on an anti depressant. This helped for a while until the symptoms of the anti depressant itself was worse than the Lyme flare ups.

I will first say that it seems like each individual needs to find their own treatment that works. Since modern medicine failed us over and over again we looked for alternatives. My wife does have it very well under control now and in the end it took major life style changes. For her having the right diet is a massive part of the equation along with regular exercise (she started running). Supposedly the extra oxygen and blood flow of exercise helps kill the Lyme bacteria. She had an extremely hard time getting up to go run but she was determined to beat the disease. After a hard workout it was pretty common for her to have an intense pain practically everywhere. From our research this can be caused by the dead bacteria being processed as waste from the body. Those two changes were major but they were probably the most important things to help her get over Lyme. She also had acupuncture sessions which seemed to make a big difference at least for a few days. It helped her feel good enough to stay motivated for exercise and she built momentum from there.

The book "Healing Lyme" by Stephen Harrod Buhner was our most important source of information. I would highly recommend it no matter what type of treatment you choose to fight Lyme disease.
 

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Windrider (Stubborn)
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Discussion Starter · #6 ·
My wife has chronic Lyme disease. She would have flare ups that put her in the hospital and we have been through far to many different doctors and nurses to bother keeping track. Multiple antibiotic treatments helped temporarily but symptoms would be back anywhere from one month to eight months later. At one point she was diagnosed with fibromyalgia and was put on an anti depressant. This helped for a while until the symptoms of the anti depressant itself was worse than the Lyme flare ups.

I will first say that it seems like each individual needs to find their own treatment that works. Since modern medicine failed us over and over again we looked for alternatives. My wife does have it very well under control now and in the end it took major life style changes. For her having the right diet is a massive part of the equation along with regular exercise (she started running). Supposedly the extra oxygen and blood flow of exercise helps kill the Lyme bacteria. She had an extremely hard time getting up to go run but she was determined to beat the disease. After a hard workout it was pretty common for her to have an intense pain practically everywhere. From our research this can be caused by the dead bacteria being processed as waste from the body. Those two changes were major but they were probably the most important things to help her get over Lyme. She also had acupuncture sessions which seemed to make a big difference at least for a few days. It helped her feel good enough to stay motivated for exercise and she built momentum from there.

The book "Healing Lyme" by Stephen Harrod Buhner was our most important source of information. I would highly recommend it no matter what type of treatment you choose to fight Lyme disease.
I'm glad she is finding relief. It's an amazingly debilitating disease. I have read that book.

My wife's infection has migrated to her brain and nervous system, in addition to her joints, her digestive tract and a few other organs. As a result, He main symptoms are severe cognitive impairment, balance issues, inability to deal with stress, migraines and severe fatigue.

The reaction you are describing as the bacteria is killed is called Herxing. When the Bacteria is killed it releases the same toxin as when the patient has a Lyme Flare...this exaggerates the symptoms. During treatment, that means that the worse she feels, the more Bacteria is being killed. The ability to detox becomes important.



Len: have you tried Ellie on canabis oil or something like that? I have read some empirical evidence that it helps. I mean what's the worst that can happen? Getting giggly and hungry. Nothing I can do but throw this into the ring. https://www.lymedisease.org/book-review-cannabis-for-lyme-disease-and-related-conditions/
She is currently being treated by one of the Leading MD's in the world with high dose, pulsing Antibiotics, both Oral & IV. It is a very specific process that includes AB's, drugs to strip away the biofilm to expose the deeply hidden Bacteria, drugs to attack some of the co-infections and supplements to assist in strengthening her immune system. We are committed to this program and have faith that it will eventually lower her bacterial load to the point where her immune system can keep the remaining bacteria dormant.
 

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My wife also has it. She has changed her diet drastically, trying her best to eliminate any wheat and sugar, with most of her carbs coming from vegetables or rice products (no fruit). If I understand it correctly, carbs can be an inflammatory. Her joints hurt frequently, not always the same ones on any given day.

She is able to work, but has never been very athletic. She will (very infrequently) ride her bike a few miles, or 15-20 minutes on her indoor bike. I try to encourage her to be a little more active (more in frequency than intensity), but I often feel guilty trying to encourage her to do something that might cause her more pain afterwards. Learning here that the exercise actually brings on the Herxing reaction, might help her accept the pain a little more. I'm going to share this with her.

Thanks for this thread, guys.
 

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Jen J, I wish your wife the best of luck! It seems like research on Lyme disease is getting more serious attention for research now.

She is able to work, but has never been very athletic. She will (very infrequently) ride her bike a few miles, or 15-20 minutes on her indoor bike. I try to encourage her to be a little more active (more in frequency than intensity), but I often feel guilty trying to encourage her to do something that might cause her more pain afterwards. Learning here that the exercise actually brings on the Herxing reaction, might help her accept the pain a little more. I'm going to share this with her.

Thanks for this thread, guys.
I think consistency is important with exercising. If it's only here and there any gains are lost by the next time you exercise. My wife did have to work into it slowly before she found a good routine. It took a lot of encouragement from me too. With the exercise she did have to start eating more carbs. For an 1,800 calorie diet she ate between 100 and 150 grams of carbs.

My wife started running about 4 years ago when her flare ups were getting worse. She would only run about a mile but consistently four times a week. Which was only 10 or 15 minutes at a time. Afterward she would have severe flare ups but now we knew why so she endured it. She planned to leave herself plenty of time to recover after any exercise. Entering 5k races kept her feeling obligated to run. Eventually the post workout flare ups were getting weaker or non existent so she started bumping up the mileage. Last year we ran our first trail half marathon and she beat me!

It was very important for her to stay warm or at least "feel" warm. For the first two years should couldn't really run below 55 degrees because of the joint pain and it made the flare ups worse. Stress would also cause flare ups so I did everything I could to make her life easier especially after she went for a run.
 

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Lost in Space...
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Sorry to hear that your wife is suffering, whatever she is suffering from. I don't doubt that she is in great discomfort and it's terrible how little we know about health and illness... (but) "chronic lyme" is not a recognized disease and I really hope you aren't just throwing away money. I absolutely hope you find answers and I mean no disrespect. I say this coming from a place where I've had my own chronic health issues and I've wasted a lot of money on snake oil and nonsense being pushed for profit which is why I believe these things should always be challenged. Again, I hope you find answers, permanent ones.
 

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Devoid of all flim-flam
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I truly feel for you and yours.
 

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Boobies!
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I truly feel for you and yours.
x2

We've exchanged information before--I feel the least 'cloudy' since I had my first infection and seem to be coping better with stress now. I completely agree about diet, supplements and exercise--I do feel better when I am able to ride regularly. And no alcohol for me--although I can now have the occasional sip of wine and not feel like death the next day...

I'm glad that Ellie is getting great care--I just bumbled along and read what I could and did what I could (mostly) on my own. And I may have just dodged the bullet with a milder infection...

Now, I almost feel like my pre-Lyme self, except if I do get worn out, the lows seem lower--but that might just be old age. And my building partner who had a much more serious and chronic infection probably 10 years ago shows almost no lingering effects--after leaving it untreated and then undergoing the massive antibiotic regimen.

Wishing you love and support,
D
 

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Boobies!
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... (but) "chronic lyme" is not a recognized disease and I really hope you aren't just throwing away money. I absolutely hope you find answers and I mean no disrespect. I say this coming from a place where I've had my own chronic health issues and I've wasted a lot of money on snake oil and nonsense being pushed for profit which is why I believe these things should always be challenged. Again, I hope you find answers, permanent ones.
You are right--it is not "recognized" since the CDC has set a standard protocol for treatment, based on inadequate science.

There are some crazy people out there selling 'snake oil' treatments for chronic Lyme--and there is a lot of pretty crazy stuff on the internet--but (and it is a big but) a lot of well-respected professionals, including my own infectious disease specialist get the patients who know that something is still affecting their bodies that can be dated pretty precisely to changes that happened after they had their first infection.

Quite reasonably, they start with the patient's reported state--and then try to the best of their ability to treat the symptoms. No one more than these good-hearted medical professionals would like more clarity--and better science--to help those treatments, but the science is not being funded.

Answering 'why' is difficult--and this fuels wild speculation and conspiracy theories about limiting the costs for treatment for the benefit of the health care industry. While probably at least partially true, the reason seems to me to be an inadequate model for treatment because of an inadequate model for the etiology of Lyme--and the associated coinfections.
 

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gazing from the shadows
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We are committed to this program and have faith that it will eventually lower her bacterial load to the point where her immune system can keep the remaining bacteria dormant.
GOOD!

I don't mean good because I think you are doing the right thing, but rather because you both think that. You have maintained communication, and forged mutual commitment, and that is a very good thing indeed. I know it's been tough, for many reasons, but so long as you can both keep working together, that's something to hold on to and something to be proud of when the issues of the moment flare up.

Eventually you get to the top of the mountain, even though the climb might seem never ending.
 

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Len I am sorry to hear about your troubles. I thought I would throw this out there, maybe your have heard of it already… Chaga mushroom. I hear it can have a positive effect on lyme disease not to mention its many other health benefits. It also taste pretty good like a nutty mocha and mixes great with coffee or tea. The tincture and the tea have different healing properties, both are beneficial.

Robin Hanbridge

Lots of places to buy it online (best from a northern source Maine or Canada), or you can look for it yourself if you live up north, this is best though it is not easily found. Just something else to consider, I hope your wife finds relief and recovery.
 

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Windrider (Stubborn)
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Discussion Starter · #15 ·
... (but) "chronic lyme" is not a recognized disease and I really hope you aren't just throwing away money. I absolutely hope you find answers and I mean no disrespect. I say this coming from a place where I've had my own chronic health issues and I've wasted a lot of money on snake oil and nonsense being pushed for profit which is why I believe these things should always be challenged. Again, I hope you find answers, permanent ones.
As much as most of us instinctively don't like it.....Medicine as a science is continually learning more and more. We all want objective solutions, but, for many things, that just isn't the case. Our Infectious disease MD was one of the first to open an AIDS treatment clinic in the early 80's when the CDC and everyone else was still trying to determine not only what AIDS was, but what appropriate treatments were. He compares where the general scientific community is today in their understanding and knowledge of Chronic Lyme with where the science was re AIDS in the early 80's. The CDC classification reflects that. In addition, the politics of this is not to be underestimated. There are many medical specialties that are making a lot of money treating symptoms (especially Rhumatologists) that are very resistant to the recognition of Chronic Lyme, as it will result in reduced revenue. Insurance companies are also benefiting from the status Que as they are currently able to deny coverage and reduce costs as a result. Unfortunately, we are in the early stages of understanding.

All that said, long term Chronic Lyme patients have very similar symptoms, and it's becoming increasingly apparent that their reactions and results from specific treatments are aligning. The recent scientific literature on the interaction of Biofilms and Lyme are a great example of the emerging knowledge of effective treatments. The body of knowledge is increasing albeit (due to funding) slowly. The other compounding factor is the variability of the strength of the immune system across the population. It is believed that there are many people infected with Lyme over long periods of time that rarely have symptoms, mainly because their immune system is strong enough to keep the bacteria dormant. Leading edge Infectious disease and Immunology doctors who recognize the clinical symtomology and biochemistry similarities across large groups of patients are working hard to not only develop methods of providing reliefbut are sharing their results with others seeing the same things. But, as in most professions, the majority of MD's cling to what they know, so change is very slow.

We did a ton of research and looked for an MD that had demonstrated success, was open enough to be honest about what they knew vs what they didn't, had a broad patient base to learn from and was publicly willing to take the heat for being an attempted change agent. We ended up with, what we think, is one of the best. We were lucky to be accepted for treatment and to have the resources. We also recognize where the knowledge base is and how slowly it's evolving.

YMMV

Len
 

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Boobies!
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As much as most of us instinctively don't like it.....Medicine as a science is continually learning more and more. We all want objective solutions, but, for many things, that just isn't the case. Our Infectious disease MD was one of the first to open an AIDS treatment clinic in the early 80's when the CDC and everyone else was still trying to determine not only what AIDS was, but what appropriate treatments were. ....
Great post--thanks for that. Interestingly, the guy I was seeing was also on the front lines of the AIDs epidemic.
 

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Len, I hate that this is happening to you guys, you and Ella are some of the most caring, down to earth people I know. We keep our fingers crossed at all times that science and technology catch up sooner rather than later, although it can't come soon enough. Not like lymes is a new disease. I was watching Nova, an episode where they were discussing an 5000 year old, naturally mummified body found in the Alps. They were testing the DNA and found definitive indications that he had lymes.
 

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Very informative thread with excellent information. For those that want to learn more and are willing to put on their "thinking caps" , I can recommend
Richard Horowitz's excellent book:

http://www.amazon.com/Better-Solvin...1457808423&sr=1-3&keywords=lyme+disease+books

For those in Europe seeking a qualified practitioner that has a firm grasp of this terrible disease I recommend Dr. Kenny De Meirleir in Brussels, Belgium.

Himmunitas

The most difficult part is finding a compassionate, experienced and open minded physician that can wrap their head around this rapidly spreading epidemic. 99.9% of doctors are clueless. Co-infections can confound physicians for years as it does not fit with the model of infection that they had been taught. Further complicating this is the rapid spread of different strains of the bacteria (Borrelia sp.) from around the world, making reliable testing even more challenging.

My sincerest and best wishes to all those who are fighting this battle themselves or with a loved one.

Don Duende
 

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i just yanked off a deer tick. My psychosomatic symptoms and paranoia are now in overdrive. I don't know why they don't just (a) give prophylactic antibiotic treatments for this and (b) use the vaccine for dogs on humans...
 
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