Lyme Disease - Anyone dealt with this?

[Fongman]

I found out yesterday that I've got advanced Lyme Disease.

Yeah, I know the risk I'm taking asking for advise here.

But has anyone dealt with this crap?

Just now studying what this all means. Not real excited about the prolonged strong antibiotic route of treatment, but I believe I've been dealing with this for about 15 years now and it's getting much worse every year. So if the only option do deal with it is to NUKE it from space, I'm in. So freaking tired of feeling like crap...


Thanks in advance.

 

[Maggot]

Re: Lyme Disease - Anyone dealt with this?

Ive not dealt with it personally but have a friend with it. Nasty stuff. Healing sent your way.

 

[George63]

Re: Lyme Disease - Anyone dealt with this?

I am sure you should know it by now, but if it has aparently gone untreated for more than a few weeks than you likely have it permanently, treatment can lessen the symptoms but not eliminate the ailment, at this point I would look for a real expert in long term treatment, it is not the same as the treatment when caught early

 

[Mo_Zam_Beek]

Re: Lyme Disease - Anyone dealt with this?

What made you look into it in the first place / how was the matter brought to your attention?


Good luck

 

[SymteX]

Re: Lyme Disease - Anyone dealt with this?

My mom had it for 2 years before they figured out what it was. She has had medical problems related to her immune ever since. She also has osteo arthritis from it now. I hope the best for you.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

maggot - Thanks for the kind words

Yeah, I'm starting to pick up on the long road ahead.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Mo_Zam_Beek</div><div class="ubbcode-body">What made you look into it in the first place / how was the matter brought to your attention?


Good luck </div></div>

Lower back pain that could not be explained or treated. Which turned into neck pain and then muscle twitching, spasms, liver levels, heart problems, loss of memory and a bunch of joint and muscle pain. Over the course of 15 years, getting worse and more wide spread every year.

I've seen so many doctors that just didn't do much of anything. I was starting to believe it was all in my head and that I was losing my mind...

 

[captrichardson]

Re: Lyme Disease - Anyone dealt with this?

Know exactly what you are going through, I was diagnosed about 2 years ago, after going through a ton of tests and doctors.

Similar situation, a lot of symptoms and no good explanation or cure for what was going on.

My symptoms really come and go, I feel like I was beaten with a bat on some days and feel 110% on others.

Per above, don't think the antibiotics will do much good this late in the game. My understanding is after the initial infection, most symptoms are caused by Autoimmune issues and antibiotics will not help that. Some people have had luck with Immunosuppressive drugs.

The disease really sucks because it does not behave the same in everyone, and people react differently to treatments.

Wish I could give you a great answer, but the best I can say is keep searching for Docs until you can find one that has a good track record with Lyme Disease and then work through each situation as best you can when they come.

Can't believe the Govt is responsible for this $#!@, but they are not being held accountable in anyway! You would think they would do whatever they could, but that is Big Govt not giving a crap about the people it supposed to serve and protect!

Best of Luck,
M Richardson

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

captrichardson,

Thanks for the input - I appreciate it.

But could you explain this a bit "Can't believe the Govt is responsible for this $#!@, but they are not being held accountable in anyway! You would think they would do whatever they could, but that is Big Govt not giving a crap about the people it supposed to serve and protect!"

 

[SRSDriver]

Re: Lyme Disease - Anyone dealt with this?

My mom went undiagnosed for 19 years. Her knees degraded. Her health degraded. They operated on everything imaginable. Nothing worked... Her spirit was getting crushed, and her health was taking it's toll.

A few years ago, she eventually self diagnosed, found a doctor who knows what 15-20 years of Lyme looks like and how the tests for it do and don't work. It's been a hell of a fight; Some of the treatments resemble chemotherapy in the way they can mess you up while fixing the problem.

After a couple years of intensive treatment, she was feeling better. Much better, although she still had frequent antibiotics. But enough better to get back on her mammogram schedule... Which turned up breast cancer.

So she went after that... And beat it.

Now she just got her knee replaced... Lyme had badly damaged the tissue in the joints, but that was the worst.

This easter weekend, My 6 year old and I took Grandma shopping... She had not seen the inside of a grocery store in 5 years. It was pure joy for me to watch the two of them hand in hand, mom walking better than I can ever remember.

Take Lyme seriously, fight it hard, and when doctors don't think you have anything, or don't know what is going on, take control yourself.

My mom's Lyme support group is full of people who are in wheelchairs, and were told they had things like MS.

But they are getting better. Fight hard. PM if you want to get info from someone who has fought and knows a lot about what to expect, what your doctor/insurance will/won't tell you...

 

[Jmilera]

Re: Lyme Disease - Anyone dealt with this?

Doxycycline for 21 days is what you need. To take immediately .

 

[Mo_Zam_Beek]

Re: Lyme Disease - Anyone dealt with this?

I am not sure if it is applicable but I know someone who's wife has MS. About10 yrs ago she was in serious decline and was likely to end up in a wheel chair inside of the next 12 months. She read extensively and concluded that the way most of us live our lives exacerbates the condition.

Today, she excercises daily and has a pretty normal life without medication. How? Radical life change. Starting with her diet. Processed foods, conditions present in our home, the soap we use to clean our clothes, the amunt of dust in our home - all of it creates in effect imflamation. This in turn has far reaching impacts on our bodies.

I have known a few folks over the years that have said this to me and I used to think it was bullshit. However, I have slowly started to look into our food (GMO driven crops / hormone and antibiotic infested meats / and heavily processed 'food' that contains loads of salt, sugar, and chemicals) and begun to ask if I made some changes would my joints feel better. I am not 'there' yet, but I am definitely at the point of taking a real look at it. What I have seen thus far isn't pretty either.


Something to look into (maybe).


Good luck

 

[George63]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: captrichardson</div><div class="ubbcode-body">
Can't believe the Govt is responsible for this $#!@, but they are not being held accountable in anyway! You would think they would do whatever they could, but that is Big Govt not giving a crap about the people it supposed to serve and protect!
</div></div>

The gov or in many cases all of mankind cannot control nature - 40 years ago St. Louis encephalitis killed a lot of children and the predictions for the next season were for thousand to die - the outcry was for the government to do something to stop this - the "something" ended up being DDT, it was well known at the time that this shit was bad news but it did work, so they ended up using it - did not turn out so good

also, do you really want the 75% taxation that comes with the cradle to grave care that some European countries have experimented with? personally I will accept a little more self reliance/responsibility

 

[JWV]

Re: Lyme Disease - Anyone dealt with this?

My cousin got it in Australia and it wasn't caught for a very very long time. Long story short, she spent a couple years of her life in very bad shape. She is much better now. She was only in her teens when she acquired the disease.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

I have to run to work, but wanted to thank everyone for the responses. I'll read them all much closer tonight.

Have a great day everyone!

 

[Switchblade]

Re: Lyme Disease - Anyone dealt with this?

Lyme disease is transmitted through the Ixodid tick. The tick eats for some four hours then defactes infecting the host with the bacterium Borrellia burgdorfi. Early recognition is actually seeing the tick, then removing it by teh head with a small set of tweezers within the first four hours, before it is done eating and defacates. DO NOT pinch it or squeeze it or burn it, or put alcohol on it. This will turn it into a mini syringe and instantly infect you with whatever it is holding inside(Only the Ixodid tick carries Lyme, but birds, reptiles, field micce carry as well).
Symptoms: Flu like syndrome with 80% getting a 'bullseye' rash on the body.
Treatment: Doxycycline treats effectively
Recognition/Syndromes:
Primary - erythema chronicum migrans...ECM, or theta bullseye rash, flu like syndrome
Secondary- the bacteria goes systemic to joints and possibily the heart or brain. Joint damage can be permanant, and heart or brain can be fatal
Tertiary- the bacterium attack vital systems(CNS Central Nervous System, cardiovascular) and the disease becomes life threatening

Doxycycline will rid the host of the infection, however, long term effects in the joints can be permanant. Doxycycline will work for long term systematic infection, however the damage caused by long term infection may, or may not heal fi the bacteria has become deeply systematic.

This is everything straight from my current books and lectures as of the last few weeks, and to my knowledge is current information.


SAFETY: when outdoors working, hunting, hiking, wear long sleeves, high socks with boots and shoes, and make frequent checks of exposed areas of skin. When back in the house, strip and do a full length check in a mirror to locate any possible ticks. As formerly stated, remove any ticks with small tweezers at the head ONLY. That other crap you have heard is just that crap, don't do it. You do not want to turn that little arthropod into a syringe and infect yourself with a potentially serious bacterium.
Other ticks carry other bacterium and all exhibit a flu like syndrome to begin with, so the best thing to do is use a system of frequent checks, and a good check when you are done within that first five hours

 

[captrichardson]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Fongman</div><div class="ubbcode-body">captrichardson,

Thanks for the input - I appreciate it.

But could you explain this a bit "Can't believe the Govt is responsible for this $#!@, but they are not being held accountable in anyway! You would think they would do whatever they could, but that is Big Govt not giving a crap about the people it supposed to serve and protect!"
</div></div>

No problem,

PLUM ISLAND! Govt did bio research on the island, to include Borrelia. If you look at where the disease was first noted in the human population it was in the geographical areas directly adjacent to the island in Lyme CT hence the name. It doesn't take a biological research specialist to connect the dots, the Govt was experimenting on the island hoping it would contain their work but the "genie got out of the bottle"!

The debate on this issue is about as bad as "Who Shot Kennedy", but I have zero doubts based on everything that I have found that this is another Govt screw up that they are never going to admit to due to the horrendous liability they would incur.

Check out the documentary "Under Our Skin"
http://www.underourskin.com/

http://www.hulu.com/watch/268761/under-our-skin

Really bad situation for a lot of folks and the majority of the medical community is still figthing over it.

Keep working with your doctors, and hopefully they can find something that will work for you.

Best of Luck,
M Richardson

 

[EventHorizon]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: SRSDriver</div><div class="ubbcode-body">My mom went undiagnosed for 19 years. Her knees degraded. Her health degraded. They operated on everything imaginable. Nothing worked... Her spirit was getting crushed, and her health was taking it's toll.

A few years ago, she eventually self diagnosed, found a doctor who knows what 15-20 years of Lyme looks like and how the tests for it do and don't work. It's been a hell of a fight; Some of the treatments resemble chemotherapy in the way they can mess you up while fixing the problem.

After a couple years of intensive treatment, she was feeling better. Much better, although she still had frequent antibiotics. But enough better to get back on her mammogram schedule... Which turned up breast cancer.

So she went after that... And beat it.

Now she just got her knee replaced... Lyme had badly damaged the tissue in the joints, but that was the worst.

This easter weekend, My 6 year old and I took Grandma shopping... She had not seen the inside of a grocery store in 5 years. It was pure joy for me to watch the two of them hand in hand, mom walking better than I can ever remember.

Take Lyme seriously, fight it hard, and when doctors don't think you have anything, or don't know what is going on, take control yourself.

My mom's Lyme support group is full of people who are in wheelchairs, and were told they had things like MS.

But they are getting better. Fight hard. PM if you want to get info from someone who has fought and knows a lot about what to expect, what your doctor/insurance will/won't tell you... </div></div>

Your mother sounds like an inspiring lady! My prayers to her and the OP.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

SRSDriver, Thanks for the info - I'll keep you in mind should I hit a road block.

Mo_Zam_Beek, I've been doing things like this for the last 7 years or so, to no, or little avail. I eat very clean and exercise rigorously. Exercise has been getting harder and harder especially in the last 12 - 18 months. Sometimes the pain level is so high it's hard to put in the effort. And I believe it's started to affect my heart. I get Heart palpitations regularly and have lost over 10 - 15 bpm off my max heart rate.

Trying to detox your life is harder than you think, especially when you really start studying about all the crap we use with no thought today. But sometimes feel like I'd have to move into a cave to get away from it all.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: captrichardson</div><div class="ubbcode-body"><div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Fongman</div><div class="ubbcode-body">captrichardson,

Thanks for the input - I appreciate it.

But could you explain this a bit "Can't believe the Govt is responsible for this $#!@, but they are not being held accountable in anyway! You would think they would do whatever they could, but that is Big Govt not giving a crap about the people it supposed to serve and protect!"
</div></div>


No problem,

PLUM ISLAND! Govt did bio research on the island, to include Borrelia. If you look at where the disease was first noted in the human population it was in the geographical areas directly adjacent to the island in Lyme CT hence the name. It doesn't take a biological research specialist to connect the dots, the Govt was experimenting on the island hoping it would contain their work but the "genie got out of the bottle"!

The debate on this issue is about as bad as "Who Shot Kennedy", but I have zero doubts based on everything that I have found that this is another Govt screw up that they are never going to admit to due to the horrendous liability they would incur.

Check out the documentary "Under Our Skin"
http://www.underourskin.com/

http://www.hulu.com/watch/268761/under-our-skin

Really bad situation for a lot of folks and the majority of the medical community is still figthing over it.

Keep working with your doctors, and hopefully they can find something that will work for you.

Best of Luck,
M Richardson </div></div>



Uh......., wow. Had not heard this yet.

I've had several people give me the under your skin link. I'll watch it tonight.

Thanks.

 

[152]

Re: Lyme Disease - Anyone dealt with this?

Very much so ,know a lof it.
Would not wish this on any one any time.....
There was a thread over in the fitness section similar a while back...
PM sent to you...

 

[captrichardson]

Re: Lyme Disease - Anyone dealt with this?

Based on my experiences, I have come across a number of "theories" out there for "Chronic" Lyme Disease.

"Damage is Done" – basically your body has significant damage to multiple systems which is not repairable and it compounds itself and worsens with time. In this case the Lyme Disease is no longer active, your problems are a long lasting result of what it did while it was active. In these instances the damage is done, best you can do is treat the symptoms and underlying causes.

"Autoimmune Overload" – In this instance your body’s immune system has gone out of control trying to fight the Lyme Disease. It actually attacks healthy parts of your body because it believes those parts contain Lyme Disease. In these instances using immunosuppressant drugs can help to slow down or turn off that unnecessary response.

“Multi Agent Attack” – in this instance the Borrelia Bacteria is accompanied by other pathogens which cause additional problems or compound the problems from the Lyme Disease. In these cases multiple antibiotic treatments may be required for multiple cycles in order to kill off all of the various pathogens present.

“Hardened Sleeper Cells” – in this instance the Borrelia Bacteria goes into a dormant protective state through a number of methods so the antibiotics cannot completely kill it off. Once the antibiotics are out of the system then is goes back into an active state.

IMHO there is a good chance that all of these may exist and in some cases they may coexist simultaneously. This would explain why in some cases the person does not test positive, the symptoms from person to person very greatly, and the success of treatments varies greatly.

When you watch Under Your Skin a lot of the above plus much more will come out.

I would caution anyone who gets in the subject of Lyme Disease, be very prepared to end up in a state where you are ready to go completely ballistic on about everyone from the Govt, to the Insurance Agencies, to the Medical Community.

Per the Under Your Skin documentary this is a major issue in this country which gets worse with every day and the major players are doing their best to sweep it under the rug and fight the people stricken with it at every turn.

I have a real problem believing more is not being done, while there has been some limited progress made over the last couple of years, basically you have an epidemic IMHO bigger than HIV but it is being denied and road blocked at every possible opportunity.

Everyone PLEASE take care of yourself, TICKS ARE NO JOKE, do everything you can to avoid them, and if you remotely suspect that you may have Lyme Disease get on the antibiotics as quick as you can for as long as you can.

Even if you don’t have Lyme Disease PLEASE watch the Under Your Skin documentary, it has some slow points but stick with it, and I guarantee it will completely change your outlook on things.

Best of Luck,
M Richardson

 

[c1steve]

Re: Lyme Disease - Anyone dealt with this?

I have dealt with it with 100% success. I work as a chiropractor, and use a device that boosts the immune system. Lyme is caused by a small bacterium, a spirochete in form. Following is a testimonial by a patient with Lyme. She has not had any Lyme Disease symptoms for 1.5 years.


Lyme Disease

Dr. Steven Danaher recommended that I use a homeopathic imprinter to alleviate the symptoms of Lyme disease that have been reoccurring in my body. I began using it 6 or 7 times a day and wearing little black box tucked away near my torso. My symptoms have gone, I realize that with lyme disease the symptoms can wax and wane, however it has now been a substantial amount of time since I have noticed any of the pain in my hips. My sciatica has not gone out, the burning sensation in my fascia no longer is continually present.


Along with the NUCCA treatments that I received from Dr Danaher, the homeopathic imprinter, a continuum of self exploration and affirmations that I utilize I am happy to be pain free. I recommend the imprinter to others and will gladly share my experience with you. I can be reached at request from Dr Danaher.


Julienne W., Ukiah
July, 2011

http://marinnucca.com/4.html

 

[UKDslayer]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Switchblade</div><div class="ubbcode-body">Doxycycline will rid the host of the infection, however, long term effects in the joints can be permanant. Doxycycline will work for long term systematic infection, however the damage caused by long term infection may, or may not heal fi the bacteria has become deeply systematic.

Other ticks carry other bacterium and all exhibit a flu like syndrome to begin with, so the best thing to do is use a system of frequent checks, and a good check when you are done within that first five hours </div></div>

I do believe that doxycycline does effectively treat acute Lyme - but I am not buying that it treats chronic Lyme or neuroborreliosis.

 

[Switchblade]

Re: Lyme Disease - Anyone dealt with this?

Our Dr. of Microbiology said that the symptoms will treat well, and chronic will take much longer to cure...up to a year or more, but it is curable with today's medicines and regimens.

I of course most value your educated opinions and experience and am not doubting what you say, as YOU are the best Doc I know(and the hottest too!)

 

[Phil1]

Re: Lyme Disease - Anyone dealt with this?

There is a very active season for ticks right now. From what I found out Permethrin is the highest rated product to repel ticks. You can buy it in concentrations up to 38%

http://www.travmed.com/catalog/product_info.php?cPath=21_80&products_id=543

"Permethrin kills ticks on contact with treated clothing. A method of reducing deer tick populations by treating rodent vectors involves stuffing biodegradable cardboard tubes with permethrin-treated cotton. Mice collect the cotton for lining their nests. Permethrin on the cotton instantly kills any immature ticks that are feeding on the mice. It is important to put the tubes where mice will find them, such as in dense, dark brush, or at the base of a log; mice are unlikely to gather cotton from an open lawn.

Permethrin is used in tropical areas to prevent mosquito-borne disease such as dengue fever and malaria. Mosquito nets used to cover beds may be treated with a solution of permethrin. This increases the effectiveness of the bed net by killing parasitic insects before they are able to find gaps or holes in the net. Military personnel training in malaria-endemic areas may be instructed to treat their uniforms with permethrin, as well. An application should last several washes."...

"Toxicology and safety

Permethrin acts as a neurotoxin, slowing down the nervous system through binding to sodium channels. This action is negatively correlated to temperature, thus, in general, showing more acute effects on cold-blooded animals (insects, fish, frogs...) over warm-blooded animals (mammals and birds):

Permethrin is extremely toxic to fish and aquatic life in general, so extreme care must be taken when using products containing permethrin near water sources.
Permethrin is also highly toxic to cats, and flea and tick-repellent formulas intended and labeled for (the more resistant) dogs may contain permethrin and cause feline permethrin toxicosis in cats.[5]
Very high doses will have tangible neurotoxic effects on mammals and birds, including human beings.

Permethrin is listed as a "restricted use" substance by the United States Environmental Protection Agency[6] due to its high toxicity to aquatic organisms.[7]

Due to high toxicity for aquatic life, permethrin and permethrin-contaminated water should be properly disposed of. Degradation is quick and should the chemical be disposed of far from any aquatic life, the negative effects would be minimized. In a non-industrial context, the contaminant may be placed in direct sunlight to induce photodegradation. Contaminated water exposed to direct sunlight will be cleared of the permethrin and any known pollutant subproducts after a few hours."

from: http://en.wikipedia.org/wiki/Permethrin

You can also buy pretreated clothing. Like any pesticide KNOW its dangers and treat it with respect. You can buy 38% strength, 8 ounce amounts for about $15. Which should last a couple years. The application rate at about 1/4 ounce to one ounce per gallon.

"Summary of Key Facts

By wearing clothing impregnated with permethrin and using DEET insect repellent on all exposed skin, you will be well-protected from many biting insects. Permethrin-impregnated clothing and permethrin-treated bed nets are critical to keeping deployed U.S. servicemembers healthy.

To avoid adverse health reactions, do not treat underwear or caps/hats. Do not allow permethrin to contact your face or eyes and try not to breathe in spray vapors. Wear rubber gloves when handling wet, treated uniforms and when mixing permethrin solutions. Permethrin can be very toxic to fish and aquatic organisms; do not let excess permethrin contaminate local water sources."

from http://fhp.osd.mil/factsheetDetail.jsp?fact=27

 

[UKDslayer]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Switchblade</div><div class="ubbcode-body">Our Dr. of Microbiology said that the symptoms will treat well, and chronic will take much longer to cure...up to a year or more, but it is curable with today's medicines and regimens.

I of course most value your educated opinions and experience and am not doubting what you say, as YOU are the best Doc I know

</div></div>

Thanks for the props, but I am sticking firm on this one. Sometimes when things don't add up we should say so.

 

[Switchblade]

Re: Lyme Disease - Anyone dealt with this?

Phil1,
I got to ask:
Do you understand all that stuff about neurotoxins and binding sodium channels and such? I only ask for the obvious reasons

 

[Phil1]

Re: Lyme Disease - Anyone dealt with this?

No, other than it is a pesticide. READ kills, read poison.

Thats why "Like any pesticide KNOW its dangers and treat it with respect."
Is important.

Farmers and ranchers are more familiar with pesticides than most urban dwellers. They are like a firearm or any weapon. When unleashed they will do their job. Know the application rate, Don't mix indoors. Don't over-apply, don't use for applications for which its not approved.

A gallon of Jack Daniels can kill you too if you don't respect it.

About two weeks ago, while sitting in the kitchen, I felt something crawling up my leg. Thankfully I'm blessed with full coverage of 1/4" long fur on my leg. I reach down and low and behold it was a tick. Must have picked the SOB when out in the pasture the night before.

So he ends up in the kitchen sink and gets a dose of scalding hot coffee. No effect. Then three doses of antiseptic mouthwash. Still no effect. WD-40 no effect. OK mother**cker, I reach under the sink for the full strength oven cleaner. It took three applications and about two minutes for that to do the job. They are tough.

 

[Switchblade]

Re: Lyme Disease - Anyone dealt with this?

doc UKD, we know the bacterium will be killed in long term systematic issues, however the signs and symptoms will usually remain once the damage has been done as you know. Pathogenic issues such as neuroborreliosis and the systematic issues of chondromalacia will never be cured as that systematic damage becomes permanant when the bacterium becomes erythemic and moves throughout the body's internal systems causing havoc on the basic homeostatic functions.

^ someone is learning 'stuff' and only seeking a bit of validation on effect


oh the upcoming drudgery of Gen Chem 1, Gen Chem 2/Lab this summer in two weeks...

 

[Kinsman]

Re: Lyme Disease - Anyone dealt with this?

I was led to believe that Lyme disease was a Northern disease, but I have read of two cases in Georgia this year. Must be spreading.
What test is used to determine Lyme disease other than the immediate symptoms?

 

[High Binder]

Re: Lyme Disease - Anyone dealt with this?

Lyme disease/MS insurance fraud and cover-up:

http://owndoc.com/lyme/multiple-sclerosis-is-lyme-disease-anatomy-of-a-cover-up/

There's also a documentary on this called <span style="font-style: italic">Under Our Skin</span>

https://en.wikipedia.org/wiki/Under_Our_Skin

It's about how the insurance companies encourage/force doctors to misdiagnose Lyme disease.

Trailer:
<object width="425" height="350"> <param name="movie" value="http://www.youtube.com/v/sxWgS0XLVqw"></param> <param name="wmode" value="transparent"></param> <embed src="http://www.youtube.com/v/sxWgS0XLVqw" type="application/x-shockwave-flash" wmode="transparent" width="425" height="350"> </embed></object>

 

[UKDslayer]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Kinsman</div><div class="ubbcode-body">I was led to believe that Lyme disease was a Northern disease, but I have read of two cases in Georgia this year. Must be spreading.
What test is used to determine Lyme disease other than the immediate symptoms? </div></div>

Lyme has been found in ALL 50 states. There are pockets it supposedly hasn't hit yet, like Dallas, but its two hours East and two hours north in Oklahoma. After the Northeast, Wisconsin and California have the highest rates.

All I can say is - its so much easier to treat early, that deal with "late" disease. I would rather over-treat 100 tick bites than undertreat one early Lyme.

 

[UKDslayer]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Switchblade</div><div class="ubbcode-body">doc UKD, we know the bacterium will be killed in long term systematic issues,
</div></div>

No, I don't know that. There is strong evidence that many of the antibiotics don't effectively permeate the blood-braine barrier, meaning infection of the CSF/brain goes untouched unless you deliver intrathecal antiibiotics. And that is iffy. Same reason why brain mets are so tough to treat - chemo's can't get through the blood-brain barrier unless delivered intrathecal.

 

[Shootinsurveyor]

Re: Lyme Disease - Anyone dealt with this?

I am a wetland surveyor in the the top 2 counties in the country with cases of lymes. Use permethrim, wear knee high rubber boots and check yourself religiously after work and the next morning. That seems to get the ones that do get on you of as soon as possible. I think most of the people who get it around here just don't really know about ticks or the outdoors in general. I don't know many people who work outdoors who have it.

 

[Switchblade]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: UKDslayer</div><div class="ubbcode-body"><div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Switchblade</div><div class="ubbcode-body">doc UKD, we know the bacterium will be killed in long term systematic issues,
</div></div>

No, I don't know that. There is strong evidence that many of the antibiotics don't effectively permeate the blood-braine barrier, meaning infection of the CSF/brain goes untouched unless you deliver intrathecal antiibiotics. And that is iffy. Same reason why brain mets are so tough to treat - chemo's can't get through the blood-brain barrier unless delivered intrathecal. </div></div>


That is the question I have to ask the Doc about when I see him. I know the brain only allows glycose/O2 in for energy and pretty much blocks out anything else. He did state in lecture that the bacteria gets killed, but the systematic issues remain due to the damage. Like you, I can't see how that is possible since the blood/brain barrier pretty much prevents anything that isn't required from getting in, and if something does get in, it pretty much stays until death occurs

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: UKDslayer</div><div class="ubbcode-body"><div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Switchblade</div><div class="ubbcode-body">doc UKD, we know the bacterium will be killed in long term systematic issues,
</div></div>

No, I don't know that. There is strong evidence that many of the antibiotics don't effectively permeate the blood-braine barrier, meaning infection of the CSF/brain goes untouched unless you deliver intrathecal antiibiotics. And that is iffy. Same reason why brain mets are so tough to treat - chemo's can't get through the blood-brain barrier unless delivered intrathecal. </div></div>

Yeah, that has me a bit freaked out. I've been on the meds for a month now and feel a lot worse. Honestly, this pretty much sucks. But I'm really hoping this does the trick before they have to instsall a PIC Line for the meds. The thought of shooting the medicine straight into my heart is a bit freaky...

I've been told I'll be on the medications until I'm symptom free for 3 months. BUT if some of the symptoms never leave how do you get off? And honestly, how do you tell the difference between symptoms not leaving vs. feeling the affects old age? I really hate this crap.

 

[RobertB]

Re: Lyme Disease - Anyone dealt with this?

I am checking out this thread. I was bit in platte city MO a week and a half ago by a tick, I am a surveyor and I have been bitten by hundreds of ticks it seems. A bunch have been found latched on but I pull them right out head and all and no big deal. Week and a half ago I wake up and go to the mirror to see this tick on my back, very small. I get my GF to try to pull it out since I cant reach it and it wont come. So she does the burnt match trick and on the third time it comes out head and all. So I think I'm good. Then this very red and inflamed bullseye pops up and everyday starts getting bigger. Work made me take off and go to clinic in Levenworth Kansas to get checked out and doctor drew blood and and gave me antibiotics. Bullseye is getting better but still no results back from clinic. Only the bill. I'm scared to death after watching this trailer. I sure hope it doesn't get out of hands. The same I wish for the OP. Not trying to hijack the thread but it asked if anyone has dealt with it.

 

[Rob01]

Re: Lyme Disease - Anyone dealt with this?

My brother had Lyme disease back in the 70's. We live about 25 minutes from Lyme, CT where it's named after. He was one of the earlier cases. He was in the hospital for quite a while but since then he has been fine. There should be light at the end of the tunnel.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: RobertB</div><div class="ubbcode-body">I am checking out this thread. I was bit in platte city MO a week and a half ago by a tick, I am a surveyor and I have been bitten by hundreds of ticks it seems. A bunch have been found latched on but I pull them right out head and all and no big deal. Week and a half ago I wake up and go to the mirror to see this tick on my back, very small. I get my GF to try to pull it out since I cant reach it and it wont come. So she does the burnt match trick and on the third time it comes out head and all. So I think I'm good. Then this very red and inflamed bullseye pops up and everyday starts getting bigger. Work made me take off and go to clinic in Levenworth Kansas to get checked out and doctor drew blood and and gave me antibiotics. Bullseye is getting better but still no results back from clinic. Only the bill. I'm scared to death after watching this trailer. I sure hope it doesn't get out of hands. The same I wish for the OP. Not trying to hijack the thread but it asked if anyone has dealt with it. </div></div>


From what I know, it sounds like you caught it very early. A round of anti-biotics will kill it completely. You'll be fine...! So glad you saw the rash and took care of it - finding it early is the key.

 

[truth]

Re: Lyme Disease - Anyone dealt with this?

http://espn.go.com/action/freeskiing/sto...lm-lyme-disease

 

[Mr Flannel]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Fongman</div><div class="ubbcode-body">SRSDriver, Thanks for the info - I'll keep you in mind should I hit a road block.

Mo_Zam_Beek, I've been doing things like this for the last 7 years or so, to no, or little avail. I eat very clean and exercise rigorously. Exercise has been getting harder and harder especially in the last 12 - 18 months. Sometimes the pain level is so high it's hard to put in the effort. And I believe it's started to affect my heart. I get Heart palpitations regularly and have lost over 10 - 15 bpm off my max heart rate.

Trying to detox your life is harder than you think, especially when you really start studying about all the crap we use with no thought today. But sometimes feel like I'd have to move into a cave to get away from it all. </div></div>

Mate - with the heart thing and reading into your various other lyme-related symptoms, your system is probably under a hell of a strain. Have you considered getting yourself looked at for Non-Addison's adrenal fatigue and getting your thyroid function properly tested as well? When your system is under constant stress from chronic disease (like lyme) plus whatever other stressors you have, your adrenals can get tapped out and your cortisol hormone production levels can tank, which in turn can have a deleterious effect on your thyroid hormone production as well as these interconnected systems slow down to try and force us into rest mode. Having a slowed HR and palpitations are a classic symptom of struggling thyroid. Anyway, bottom line - as if it's not bad enough just to have lyme, you can get adrenal fatigue along for the ride with it and if not dealt with, you can crash big time and whatever underlying conditions you have can go from chronic but controllable to acute/nasty in no time flat.

Only reason I ask is that I had chronic infections (bacterial and parasitic), which were fortunately treatable but those, on top of high risk/high stress work, training, etc. put my adrenals and thyroid in the hurt locker. Still trying to pull out of it now.

Just my .02c worth. Wishing you all the best.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Dr Scholl</div><div class="ubbcode-body"><div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Fongman</div><div class="ubbcode-body">SRSDriver, Thanks for the info - I'll keep you in mind should I hit a road block.

Mo_Zam_Beek, I've been doing things like this for the last 7 years or so, to no, or little avail. I eat very clean and exercise rigorously. Exercise has been getting harder and harder especially in the last 12 - 18 months. Sometimes the pain level is so high it's hard to put in the effort. And I believe it's started to affect my heart. I get Heart palpitations regularly and have lost over 10 - 15 bpm off my max heart rate.

Trying to detox your life is harder than you think, especially when you really start studying about all the crap we use with no thought today. But sometimes feel like I'd have to move into a cave to get away from it all. </div></div>

Mate - with the heart thing and reading into your various other lyme-related symptoms, your system is probably under a hell of a strain. Have you considered getting yourself looked at for Non-Addison's adrenal fatigue and getting your thyroid function properly tested as well? When your system is under constant stress from chronic disease (like lyme) plus whatever other stressors you have, your adrenals can get tapped out and your cortisol hormone production levels can tank, which in turn can have a deleterious effect on your thyroid hormone production as well as these interconnected systems slow down to try and force us into rest mode. Having a slowed HR and palpitations are a classic symptom of struggling thyroid. Anyway, bottom line - as if it's not bad enough just to have lyme, you can get adrenal fatigue along for the ride with it and if not dealt with, you can crash big time and whatever underlying conditions you have can go from chronic but controllable to acute/nasty in no time flat.

Only reason I ask is that I had chronic infections (bacterial and parasitic), which were fortunately treatable but those, on top of high risk/high stress work, training, etc. put my adrenals and thyroid in the hurt locker. Still trying to pull out of it now.

Just my .02c worth. Wishing you all the best. </div></div>

Dr Scholl,

Thanks for the info and kind words.

Yes, I've been having my thyroid and adrenals monitored through out this process. My doctors are also watching my liver function as well. I have comprehensive blood tests done bi-monthly. Just got done taking one last week. Will have a consultation on the results 6/9. So I feel like they are monitoring things on a constant thorough basis.

The heart palpitations is the only area of improvement that I can really tell at this point. Was having several on a daily basis - now it's down to a couple a week.

Still feel like I have the energy of a wounded gnat, but hoping for breakthrough soon. The good thing is I have still been able to get my work done each day. Took last week off from exercise, and will try to add that back in this week. Just have to follow through with the process.

Thanks again.

 

[Mr Flannel]

Re: Lyme Disease - Anyone dealt with this?

No worries - I know what it's like being used as a pincushion every couple of weeks.

Just got to stay on the road and keep plodding forward.

Best of luck with it and take good care of yourself.

 

[redirt78]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: UKDslayer</div><div class="ubbcode-body"><div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Kinsman</div><div class="ubbcode-body">I was led to believe that Lyme disease was a Northern disease, but I have read of two cases in Georgia this year. Must be spreading.
<span style="font-family: 'Arial Black'">What test is used to determine Lyme disease other than the immediate symptoms?</span> </div></div>

Lyme has been found in ALL 50 states. There are pockets it supposedly hasn't hit yet, like Dallas, but its two hours East and two hours north in Oklahoma. After the Northeast, Wisconsin and California have the highest rates.

All I can say is - its so much easier to treat early, that deal with "late" disease. I would rather over-treat 100 tick bites than undertreat one early Lyme. </div></div>

So is there a test? I have been bit plenty of times. Just recently was bit about 10 times in 2 days. I have a doctors appointment setup for the first week of June for a check up and would like to know if there is a way to test for it. I have had back problems and ailments in the last 8-10 years but always wrote it off on old tractors and heavy equipment etc. Would be nice to know one way or the other.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

redirt78,

I'm certainly no doctor, but from what I've learned so far here's some info. Up until last September there was NO 100% diagnosis test. There is now a test that is able to culture the bacteria and confirm the disease. As of this point it has proven to be 100% accurate. There are three Universities independently testing this new test and have thus far confirmed it's results. From my understanding, all other tests until this latest one, were only 60% accurate. I've been told this is a game changer in the Lyme diagnosis arena.


Here's the test for lyme disease info. It's actually called:

Basic Borrelia Culture and Immunostaining

From:

Advanced Laboratory Services

510 Elmwood Ave
Sharon Hill, PA 19079
855-238-4949

Email: [email protected]

www.advanced-lab.com

The lab sent the kit to me and then sent a nurse to my house to take the blood. It's then cultured over a two month period. Not cheap - think it was $600.

Here's a link to the medical clinic that has finally treated me without making me feel like a loon.

http://www.holtorfmed.com/

And this is the specific doctor that has been helping me:

http://www.holtorfmed.com/index.php?section=partners&subsection=partner_details&partner_id=6



Here's an informative email I received from one of my sister's friends that has been fighting this disease in her child for years. And it's pretty informative.


Contrary to what you may have heard, Lyme Disease is not a rare illness, but a pandemic. It affects virtually millions of people in all 50 states and every continent. It is the fastest growing infectious disease, over 10 times more prevalent than HIV / AIDS. It is constantly misdiagnosed because it mimics over 300 other illnesses including MS, ALS, Parkinsons, Lupus, Cancer, Fibromyalgia, Chronic Fatigue Syndrome, Rhumatoid Arthritis, ADD, Alzeimers, Cardiac, Neurological conditions, even Psychiatric conditions like Schizophrenia, Bipolar disorder, and more! It is a multi-system disease that can affect any or every part of the human body.

In May 2008, following a lengthy investigation of the IDSA (Infectious Disease Society of America) Lyme Panel, the State Attorney General of Connecticut determined, that IDSA Guidelines for diagnosing and treating Lyme Disease are FLAWED, and that panel members have CONFLICTS OF INTEREST. Yet the CDC (Center for Disease Control) has adopted these flawed guidelines and mainstream doctors continue to diagnose and treat under these flawed guidelines, resulting in endless suffering and even death to millions of people.

Details of State Attorney General Investigation
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

State Attorney General / IDSA Agreement
http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf


LYME DISEASE: THE UNKNOWN EPIDEMIC

http://articles.mercola.com/sites/articles/archive/2001/07/25/lyme-disease-part-two.aspx



LYME DISEASE OVERVIEW

http://www.personalconsult.com/articles/overviewoflymedisease.html

CHRONIC LYME DISEASE… REAL DISEASE OR MYTH?
http://www.lymebook.com/chronic-lyme-disease-science


INTERVIEW ON LYME DISEASE

http://www.rifkinradio.com/audio/lyme.mp3


REASONS FOR A FALSE NEGATIVE WESTERN BLOT

http://www.anapsid.org/lyme/lymeseroneg.html

PROOF THAT CHRONIC LYME EXISTS

http://www.ilads.org/news/lyme_news/73.html


EVIDENCE THAT IDSA KNOWS CHRONIC LYME EXISTS

http://sci.tech-archive.net/Archive/sci.med.diseases.lyme/2008-06/msg00078.html

AOL ARTICLE – LYME IS AN EPIDEMIC

http://www.aolnews.com/opinion/article/o...sms_ss=facebook

The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines
http://www.peh-med.com/content/5/1/9

If you get a chance check out this documentary it's pretty good:

UNDER OUR SKIN (Award Winning Documentary Film)

http://www.underourskin.com/

You can watch it on Netflix or Hulu.


INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY (Private Medical Society, like the IDSA, but they are Lyme Literate!)

http://www.ilads.org/



That's probably a lot more than you wanted, but I hope it helps.

 

[redirt78]

Re: Lyme Disease - Anyone dealt with this?

Wow, thanks for all the information and best of luck with what you are dealing with.

 

[UKDslayer]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: RobertB</div><div class="ubbcode-body"> Work made me take off and go to clinic in Levenworth Kansas to get checked out and doctor drew blood and and gave me antibiotics. Bullseye is getting better but still no results back from clinic. Only the bill. I'm scared to death after watching this trailer. I sure hope it doesn't get out of hands. The same I wish for the OP. Not trying to hijack the thread but it asked if anyone has dealt with it. </div></div>

This pisses me off - sorry but if you were an existing patient of mine (i.e. seen in past year), you tell me you got bit by a tick, and you are in an area that is endemic for Lyme, I will call in the damn $10 worth of antibiotics. I just can't get past in my end this "you must do an ELISA first, then if and only if that's positive you to a Western Blot" ARRRGH. Yes, there is a small chance treating you with doxycycline for 3 weeks could cause an adverse event including allergic reaction, photosensitivity (my biggest warning with doxy esp. in summertime as you can get a wicked sunburn very easily on doxy), but if your not a female that can be pregnant, not a child whose "12 yr. molars" or permanent teeth haven't erupted, yeah you might have loose stools but nothing a little Activia wouldn't take care of, and you aren't dealing with chronic Lyme - do we really need to do all these tests or can we not just be safe & treat empirically for the public health (epidemiological) standpoint?

There were several articles today on Medscape for the docs out there including a new recommendation from Slovenia to limit doxycyline to 100mg twice a day for 10 days for ECM, (I personally wouldn't go there - I would do at least 3 weeks), as well as identification of a new Erlichiosis (prior thought to be only in animals) from a deer tick in Wisconsin & Minnesota in 4 patients that presents as headache, fever, +/- the ECM rash, but may not test like Lyme (note: other strains of Erhlichiosis previously linked mostly to the Lone Star amblyomma tick, this is "new" for an Erhlichiosis to be associated with the deer tick Ixodes scapularis. There was also info about the "Lyme foci" between Maine & Virginia, and the other Wisconsin/Minnesota/Illinois. There was one summary article about "following the steps of the protocol" (aka "what docs are supposed to do", stuff about controversies (like I bring up), politics vs. sound science, PCR not a reliable test for Lyme arthritis, "Rule of 7's in predicting Lyme meningitis", Chronic Lyme linked to ADHD in adults...if y'all are interested I'll go into more summaries later; I wish I could just give you links but I know they won't work without MD/DO status. Since I have presented my biased view on treatment, don't mind doing a summary, just hate boring y'all with another thread-ending post. Also, I did a heavy literature search on lyme neuroborreliosis about a year ago if anyone has a personal interest and wants me to fax them (about 30pages) would be happy to do so.

 

[Fongman]

Re: Lyme Disease - Anyone dealt with this?

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: redirt78</div><div class="ubbcode-body">Wow, thanks for all the information and best of luck with what you are dealing with. </div></div>

No problem. Update me with your status once you figure it out...


UKDslayer - I'll see you soon. Thanks.