# Lyme



## HermitJohn (May 10, 2002)

After a hot miserable summer trying 3 doctors and eliminating all the usual suspects for my symptoms, current doc and I started scraping bottom of barrel for something that even somewhat fits and came up with Lyme disease. I dont have insurance so doc said well its around $200 for the Lyme test or you can just take the course of antibiotics for less than $10. So been taking the doxy antibiotic for few days now. Maybe some improvement, not lot. Doc wants me to call him after couple weeks to see if any improvement.

After just few days cant really say for sure as I've had occasional better days during summer. And if there is an improvement, its not an earth shattering one. Got some teasel tincture on its way here. Can take that at same time as antibiotics but not supposed to take it at same time of day. Been reading and lyme can mimick hypothyroidism so good chance that I have it, I do live in a tick haven.

All I can say is if it aint lyme, perhaps whatever I have is a yet undiscovered disease and can be called Hermit John Disease...... I'll be famous though probably too sick or too dead to enjoy the fame....

From what I've read, there is no lyme test to say "your cured" as the official lyme test giving a negative result doesnt mean you dont have lyme. Nasty little bacteria apparently are good at hide and seek. And you dont know if you will get a reaccurance. What a delightfully nasty little disease!

One thing, all the tests I've taken that have come back "normal", I should be a really healthy man if only I didnt feel like crap and have the edema. My heart, liver, and kidneys are fine, and I dont have gout, diabetes, thyroid problem, or adrenal insufficiency. No hypertension, all the nurses compliment me on my blood pressure.... They are very used to dealing with people having high blood pressure I think.

Oh question. Yes, how soon after starting antibiotics should one notice an improvement if its indeed lyme? I assume by doctor's request that something should change within 2 weeks? Do I stop feeling incredibly fatigued? Does the edema stop?


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## marinemomtatt (Oct 8, 2006)

Have you read Barbara Hall's adventures in Lyme? http://www.ladybarbara.net/html/lyme_index.html

Maybe you can find your answer in her "Later Cases" link.


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## steff bugielski (Nov 10, 2003)

I would advise against having any test if doc is willing to give you the antibiotics without them. It cost DH 15 for the doc to pull blood and send it out. Then we got a bill from the lab for $934.00 yes that is correct.
Do some research on a rife machine. Sounds hokey but it was the only thing that helped Dh.


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## HermitJohn (May 10, 2002)

I am definitely feeling better this afternoon. Hot so edema is worse than this morning, but I took short walk and feel fine. No huge amount energy, but not super fatigued. I am at least partially functional again.

Antibiotics shouldnt be too hard to get without a prescription if it came down to that. But current doc doesnt have problem prescribing something like this without expensive test first. He knows I dont have insurance. Taking the cheap drug becomes the test.

I'll look up the rife machine, but seems like the doxy stuff is working. And as I say, I have some tincture of teasel root on the way. Its supposed to keep the Lyme bacteria at bay. Have to say some folk selling that teasel root tincture are mighty proud of their product. Place I got it was fourth the cost and seemed reputable enough though I suppose one never knows. Have been cases where even correct looking prescriptions from local drug store have turned out to be counterfeit. Not local drug stores fault, their supplier got a bad batch somewhere down the line.


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## HermitJohn (May 10, 2002)

steff bugielski said:


> I would advise against having any test if doc is willing to give you the antibiotics without them. It cost DH 15 for the doc to pull blood and send it out. Then we got a bill from the lab for $934.00 yes that is correct.
> Do some research on a rife machine. Sounds hokey but it was the only thing that helped Dh.


I am definitely feeling better this morning. 

I dont know what to say about your $934 bill. That would make me very angry, especially if I were led to believe it would be much less. Obviously many test like many of newer drugs, the price they want is totally disconnected with what it cost them. Its all about gouging the system for the most you can. When capitalism goes bad!


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## marinemomtatt (Oct 8, 2006)

Last Fall I lucked onto a great patch of Teasel...I wish I had gathered more root because the landowner SPRAYED...yikes!


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## mekasmom (Jan 19, 2010)

Do you have a microscope? Or can you go to someone for an LBA of your blood. Lyme disease shows up as spirochetes in your blood. Just look at it. It doesn't cost anywhere near $200 even if you go somewhere and have a live blood analysis, it's more like $30-50 at most. And they can see all sorts of things not just spirochetes. I am going to put a link below. Look at the slides. On the last slide see the small black rod shaped squiggly lines? Spirochetes.
http://jessicafenton.wordpress.com/2011/03/29/my-live-blood-analysis-consultation-with-ruth-daber/


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## HermitJohn (May 10, 2002)

Interesting. Actually I do vaguely remember having a cheap microscope I got in junk box at some auction. But that was years ago, no idea where it is now. Cant be that expensive to find used "high school" type microscope on ebay or someplace.


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## mekasmom (Jan 19, 2010)

Here's lots more links on the spirochete bacterial types. You can learn a lot just by looking at these then switching google to "images" and see them.
http://www.google.com/search?q=spir...w=1280&bih=598&prmd=ivns&ie=UTF-8&sa=N&tab=iw


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## cathleenc (Aug 16, 2007)

There is no definitive test for lymes - every test available has a very high 'false' reading factor. If it were so easy to test for lymes as to see a spirochete then I doubt the high false readings would exist.

Have you tried dandelions to help with the edema? You can eat the greens, make tea, make tincture, ..... dandelion is amazing to help with edema without crashing your potassium.

I ended up in the er with edema that made me look like a balloon - everywhere, including my face. Tested neg for lymes. Slowly responded to the antibiotic. 

wishing you vibrant health!


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## HermitJohn (May 10, 2002)

Glad to hear somebody else has the edema as part of lyme disease. I was starting to feel like a freak from my reading about it.

Believe it or not, I have very few dandelions up here on hilltop. But can buy dried root I suppose. Edema isnt horrible at this point and I seem to be able to keep it within reason with hydrocortisone cream. It was very bad at first part of summer, thats what got me to first doctor who kept insisting it was gout. Go figure. I was a regular PUFF daddy and you dont puff up like that with gout. Second doc put me on diuretic which made me feel like I had been beat up within a week. I discovered the hydrocortisone cream works on my own. And edema worse on hotter days by the way.

I looked at microscopes, but shoot, the name brands I remember are history. These were all foreign and not that cheap. The affordable ones looked like toys and can imagine they arent really usable. Not saying the foreign ones couldnt be ok, but I'd want to test one in person before buying. Good chance you get one with bad optics and be blurry.

Anyway got my teasel yesterday so taking both teasel and doxy.


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## cathleenc (Aug 16, 2007)

I've always been able to find decent microscopes, for free, from craigslist or freecycle. Give it a try!

Also found significant relief by drinking nettle tea - a cup of dried nettles in a quart of boiling water, infused (aka soaked) overnight, then drained and squeezed and drunk the next day. Lots of healthy microminerals that aid and abet healing and good health. You can buy a pound of dried nettles from several online places - I'd start with http://www.mountainroseherbs.com/ and order some dandelion tincture while you are at it. Much safer than cortisone.


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## Pink_Carnation (Apr 21, 2006)

Something else to consider is if you have recieved a tick bite there are other types of infections you can get besides lyme. Babeosis is one that is becoming more of an issue. This means you might have extra symptoms depending on what else the tick gave you.

The problem with the lab testing cost is that the first test really only tells them if they need to go to the more expensive test. I would guess that is how the bill got to $934...they had to go to the more expensive test. 

If you find a bacteria in a drop of blood on a slide it tells you that something is there but if you don't it doesn't mean that there isn't. That is why for blood infections they culture the blood so they can grow enough to make it so they can find it.


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## HermitJohn (May 10, 2002)

I did a search on local Craigslist and only one listing that included a microscope. They had a pic and it was one of those toy junior scientist type kits. In other words, a toy. You must live in an interesting area if real adult type microscopes in servicable condition are being given away... 

Course around here something like an adult type microscope would be priced simular to a new one. Here seems like majority of ads for anything list a price that you could probably get just walking into retail store. I guess they expect you to bargain with them so they want to leave lots of bargaining room. Either that or they are looking for rich suckers?? I wouldnt respond to such ads. I dont enjoy such games. When they get serious and put realistic price on what they are selling, then I will go look. Rather deal with somebody that puts on reasonable price and indicates they are firm on that price (and mean it).

I'll keep dandelion and nettles in mind, but right now edema is livable. I am more interested in getting my energy back. Its a slow progression. I am definitely better than when I started the doxy but I am not fully functional by any means.

The problem with the lab test prices is that they arent reasonable for cash customer. They are inflated to play games with insurance companies. They are playing same game as those people that put new price on old junk. They dont negotiate with individuals just insurance companies.


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## beccachow (Nov 8, 2008)

Hermit John, PM me. I have been dealing with Chronic Lyme Disease for about 7 years now. If you are interested in any aspect, I have been there, done that, got the T-Shirt but forgot where I put it, and really am too tired to look for it.


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## frank (Dec 16, 2008)

HJ, pm me.


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## cathleenc (Aug 16, 2007)

I lived within a few miles of a major university - hence the heavy load of used microscopes.

And nothing has ever helped my energy level like nettle tea, drunk every day! amazing stuff.


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## HermitJohn (May 10, 2002)

cathleenc said:


> I lived within a few miles of a major university - hence the heavy load of used microscopes.
> 
> And nothing has ever helped my energy level like nettle tea, drunk every day! amazing stuff.


I live not that far from University of Arkansas. They have a surplus auction about every year or two. Course they tend to sell pallet loads of stuff. So usually people there looking to buy and resell it individually on ebay or something. Only went once as I'm not usually interested in wholesale quantities of things like outdated computers and the like. parking was a bugger and that time went with somebody else who quickly got bored so we left. Rule of auctions, either go alone or with somebody really into auctions as many times the best deals are towards end of auction when people thin out a bit and just the bargain hunters left.

Ok you sold me on trying the nettle tea. I've had low energy for years, just not super low level it reached this summer. Especially nasty about middle of summer when I started having bad reaction to coffee. Been using coffee as a crutch for long time.


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## HermitJohn (May 10, 2002)

Ok, taking my doxycycline and my teasel on time like a good boy. My energy was getting better slowly but surely. Bam! Today the floor kinda fell out and I'm back to low energy and perpetual exhaustion. And edema in my neck was bad last night. I found out about the low energy when I tried to take a walk this morning to help the edema. Such a nice day too with cool temps and low humidity.

Is this normal with lyme? Or did lyme bacteria adapt somehow?

By way did order some nettle leaf and some dandelion root to try.


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## Tabitha (Apr 10, 2006)

Much helps much. 
I would also do some research on H2O2, inhaling the stuff or taking food grade internally. And of course stick with the herbs. The bought may not be as effective than what you could harvest fresh if you had it growing. But better than nothing. 
Wishing you complete recovery, My brother had Lyme, so does my best friend. Colloidal silver is something else to be considered. My friend told me about it, she was scared to try it though but she told me there were some glowing reports.


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## Ravenlost (Jul 20, 2004)

Lyme bacteria can definitely adapt...that's why the available tests are so unreliable.

Hate to hear that you're having a relapse.


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## mekasmom (Jan 19, 2010)

The alternative treatments for lyme are 
colloidal silver, and Biochlordox (dioxychlor) for 2-4wks.

Some people also take colostrum, but the two treatments are the silver and biochlordox.


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## HermitJohn (May 10, 2002)

Ok, I've been futzing with this assumption of lyme for couple months. The doxycycline seemed to help a bit then relapse. I developed an increasing cough. I had thought it was leftover from my chronic bronchitis as a child. Anyway I then got some colloidal silver and some amoxicillian. Cough lessened. But I still am very weak and have pain in kidney area. And I still have no idea what I have, if its for sure lyme though that seems like very good guess.

Going to make an appointment tomorrow for sometime next week for one last visit to the GP and give him latest symptoms. But not lot hope. He already was making noises of referring me to specialist. $800 to say hi!

Thing is even if a specialist could outright guarantee me complete health in exchange for all my land and worldly goods, there isnt time in my life to reacquire them in any meaningful manner. So whats the point?


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## mekasmom (Jan 19, 2010)

Lyme isn't a natural disease, so it is hard to get rid of. It was a bio-weapon that got released from an island near NY. That is why it is so awful and almost impossible to get over.
They are having luck with a few months of colloidal silver and biochlordox. 
You are never going to get rid of it with a round of antibiotics here and there. It takes months of really strong silver to kill it out. Biochlordox (dioxychlor) is also used with the silver if you can find it.

[ame]http://www.google.com/search?q=lyme+disease+plum+island&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-USfficial&client=firefox-a[/ame]

http://www.google.com/webhp?hl=en#h....,cf.osb&fp=a4183349b9a276ea&biw=1280&bih=615


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## HermitJohn (May 10, 2002)

mekasmom said:


> Lyme isn't a natural disease, so it is hard to get rid of. It was a bio-weapon that got released from an island near NY. That is why it is so awful and almost impossible to get over.
> They are having luck with a few months of colloidal silver and biochlordox.
> You are never going to get rid of it with a round of antibiotics here and there. It takes months of really strong silver to kill it out. Biochlordox (dioxychlor) is also used with the silver if you can find it.
> 
> ...


Maybe depend on the person or animal with it. One of my cats was diagnosed with lyme by vet back in August. A round of doxycycline and she recovered nicely. But then we get back to her actually being diagnosed as having it. Vet did it in office with microscope. She went into back room and thought I heard a centrifuge and she saw the spirochetes and voila. 

The human doc doesnt do such, he said $200 for the basic test they farm out to a lab. And guess it can go higher. So I dont know for sure that I have lyme as I went for the round of doxycycline rather than throwing money at a maybe test. 

Is the kidney pain part of lyme? The doc said my kidneys and liver were fine. So why the pain?

I get that the low energy (really low) can be part of the deal.


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## HermitJohn (May 10, 2002)

Ok this is odd but interesting. Last fall I had bought some unfiltered apple cider vinegar to see if it would do anything for my energy. It didnt. Saw it in fridge couple days ago and been using it last couple days and kidney pain is pretty much gone. ???? Apparently it works well with the colloidal silver and the amoxicillin. Still weak as a pup, but feel best I have since last spring. Not saying a lot, but...


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## newfieannie (Dec 24, 2006)

hope you continue to feel better HJ. all the best, ~Georgia.


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## charmd2 (Apr 14, 2011)

Do you have a good relationship with the vet? Ours would check my blood for lyme if I asked him to. He has given me stitches before too. Shhhh. Quiet. Lol


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## HermitJohn (May 10, 2002)

charmd2 said:


> Do you have a good relationship with the vet? Ours would check my blood for lyme if I asked him to. He has given me stitches before too. Shhhh. Quiet. Lol


Alas no, she wouldnt take any risk by providing any medical service for a human and wouldnt do anything free. Vets anymore like human doctors, $$$$ is the prime focus and they worry about law suits and such.


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## HermitJohn (May 10, 2002)

newfieannie said:


> hope you continue to feel better HJ. all the best, ~Georgia.


There are good days and bad days.


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## HermitJohn (May 10, 2002)

Whatever is causing the inflamation, found ibuprofen is helping. I know, cant take as much of it as I'd probably like to. Got the idea to try it, do to the soothing effect of the dandelion root tea.

Anyway been on the amoxicillin for while and some of gut distress is from effects of it on friendly gut bacteria I am sure. So got some probiotic stuff on the way. Think the amoxicillin has done as much as its going to do. Do wish I knew what I have once and for all. Guessing that its lyme is not helping.

I have friend in TX that says my symptoms sure seem very simular to those his wife had before being diagnosed with hypothyroidism. But doc number two this past summer said test indicates my thyroid is fine. Its just frustrating dealing with this and with America's medical care system. Best of best care for the wealthiest of the wealthy or the few super lucky with gold plated insurance.... Everybody else just hand over all your assets, then go off in corner someplace to die.


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## stormwalker (Oct 27, 2004)

Are you on doxycycline or amoxicillin?


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## HermitJohn (May 10, 2002)

I did the doxycycline in September and it seemed to work a bit, but then big relapse after couple weeks. Did nothing after that.

I got some amoxicillin on my own and been taking that. Cant say there is really any affect other than decimating the friendly flora in my gut. Its quite effective at doing that. So the amoxicillin has to go and some probiotics to get my gut functional again. This feeling weak and exhausted all the time is just extremely frustrating so I am guessing and grasping at straws.

Trouble is that just assuming I have this or that isnt a sensible strategy. On other hand, the GPs this past summer have eliminated all the easy/cheap to diagnose stuff. My symptoms just dont fit anything exactly. 

For all I know, I could have some rare cancer or it might still be lyme or ???? Course if its some rare cancer or something, dont have money to fight it anyway. No average individual does without gold plated medical insurance which is no more affordable than treating the disease itself. but at least knowing what I am dealing with is always better than not knowing. Heck if I could find a real soothsayer that could accurately predict exact day of my death would work also....


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## motdaugrnds (Jul 3, 2002)

I do feel for you HermitJohn. The not knowing is what would be giving me low energy!

Your smart to be drinking the nettle tea and using the probiotics. If I were in your shoes I would, also, be flushing out my system with a lot of Vit C and keeping my stomach in an "alkaline" state rather than an "acidic" one. (With all the stuff you've been taking, your body is bound to be feeling somewhat bogged down!)


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## HermitJohn (May 10, 2002)

Got the burdock root and the licorice root today. Amazon is fast even if they insist on using huge box so I have to drive to PO. Burdock root is similar taste to dandelion root though I think I like it better. Pretty much same short term soothing effect. Its an anti-inflammatory like the dandelion.

The licorice root is actually tasty. Dont even have to make tea, just chew a pinch of it until flavor is gone. Not sure what if any effect it has, supposedly Chinese used it for chronic fatigue... I have that in spades. Last day for the amoxicillin, I just cant tolerate anymore of its effects on my gut. Keep going with the colloidal silver. The probiotics should be here soon. I keep trying enough stuff, maybe something will work.


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## motdaugrnds (Jul 3, 2002)

Don't know if this applies to you; but severe/chronic depression can take the energy right out of you too; and if it has been around awhile, you may not even be aware it is there.


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## HermitJohn (May 10, 2002)

Nope, not depression. Still have desire to work on projects, but you move around like a weak arthritic 90 year old needing a walker, not lot gets done. As long as I move very slow, I can get stuff done s...l...o...w...l...y...., really slowly. If I push myself, then almost immediate total exhaustion and back to lying on bed feeling like death warmed over.

Example this past month I put second new rear tire I bought couple years ago on my MF65 since the second old one had finally gone flat and had to be taken off anyway. This shouldnt be big deal, but instead of day or actually parts of two days since rim had to be cleaned up, welded, and painted, it took me nearly whole month. And lifting around on a 38 inch tractor tire exhausted me VERY quickly. Didnt help that the new tube for it that I also bought couple years ago had dry rotted so I must have taken tire apart least 4 times before I figured out patching wouldnt work and I needed another new tube. But I did it. I am still stubborn plus I needed to brush hog this fall for fire control purposes since I dont have energy to hand mow several acres. Believe me depressed people dont manually change out 38 inch rear tractor tires! Most healthy people are too lazy (or too smart) to do that themselves.

Edit: Also mention that depression doesnt cause lower leg edema, foot pain, swelling in neck and so on. Its not just super low energy and exhaustion. But the super low energy and exhaustion is the BIGGEST frustration.


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## newfieannie (Dec 24, 2006)

everytime i read HJ's post i'm reminded of my son a few years ago. he was working on an oil ship. had to be sent home. he had the same symptoms. had every test known to man almost. he was home for 1 year. down to relying on a walking stick. he use to come visit his father and i. when he could . mostly we would go to him with food and whatnot.

the doctors were baffled. they finally came to the conclusion it happened when he was in Venesuela immediately before he fell ill there was a big rainstorm and spiders and bugs were crawling from everywhere. they deduced he must have been bitten. not sure what they gave him or if it was even the cause . he gradually got his strength back and was able to return to work. with no lasting effects. the one good thing i guess for him was he had insurance and was being paid by his company full salary the whole time.

it is too bad none of us are close by HJ. i'm sure there is much we could do for him. yes we all know he likes to be alone same as some of us but i think in this case he might take a little help. even just to get tires on. stuff like that. all the best HJ. ~Georgia.


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## HermitJohn (May 10, 2002)

Well I can hope I get better little by little. Havent been to Venezuela.. LOL I am still alive enough to feed myself and animals. Not changing any tractor tires this month. 

Friend from Texas and his wife come up this time year to spend time at their family retreat. He has emailed that they will help me find some seasoned wood to buy and help me move it here. I am not up to cutting own wood and ads in paper tend to lie about quantity and quality of wood. Think I can still drive big pickup but I am not up to loading and unloading by myself. Nobody is going to deliver wood to my place.


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## HermitJohn (May 10, 2002)

More up and down. Had couple decent days, not feeling good, but functional, then some "walking dead" zero energy days. The probiotic has my gut functioning again. I think there is internal inflammation as the dandelion/burdock/ibuprofen seem to have most effect. Found cant handle whole lot of licorice root though I think it does help with energy. Worst is the brain fog and super bad short term memory.


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