HealingWell
Search Close Search
☰

Need Guidance To Begin First Time EVER Treatment For Chronic Lyme

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/29/2016 5:49 PM (GMT 0)
I DO, I really DO keep the "bad thoughts" at bay and as far away as possible. I am by nature the jokester the HAPPIEST guy in the room. I keep everyone ELSE UP and going. This last 3 years with the surgeons having literally robbed me of any chance for a normal life and need to take narcotic pain medications for the rest of my life. It just GETS to me at times and I get overwhelmed. For 2+ years I was paying over $8K for just Fentanyl. Just that ONE drug. ANYWAY-enough of that jazz!

Well oddly as I got up ad 5 AM and took my morning Doxy ABX pill, 30 or so minutes later I began getting SO sick....All of a sudden it was like the only flu I remember but that was over 50 years ago. Nausea SO bad and eyes hurting, had to literally turn light around me OFF and TV sound down, WEIRD. Felt sick for an hour or so and getting better. Wonder if maybe just that now beginning day 5 on the antibiotic and taking on an empty stomach as directed IF able is all that happened or if Herx is happening? Just the craziest reaction I ever honestly remember. I told Trish (my wife) that I am gonna hope it IS Herx since it would possibly be a message that I DO have this Lyme and it doesn't like me fighting back:-) So I turned my low point to my high point positive thing.

Then I get an email from this NUT case Derek Clontz. Good GOD this guy is either on something he should quit and quit NOW, or just plain mentally ill. He spins out and starts essentially telling me I am wasting his time when ALL I did was give him the list of those 4 items I bough, that list he ASKED for! Now all of a sudden he say I am wasting BOTH our time etc and ro see a doctor and good luck. HOW some loonie tunes Jeckle & Hyde with multiple personalities can survive in the Herb business is beyond me! I know their webpage mentions he is "just back from Sabbatical" so maybe he had some kind of Nervous Breakdown or something and is losing it again after just 5 days back on the job? Whatever it IS, thank God I didn't wast $300.00 for his Cowden Protocol. My wife even tried to warn me that something seemed a little "off" about his weird questions and sudden turn around insulting my choices and almost calling me an idiot in his wording and throwing around HIS superior product AND experience. A well what do YOU know attitude? ALL I know for sure is Derek Clontz will never see a penny for us and neither will his store myherbs dot net! I actually thought I was going to black out I got so mad when I get his next "personality change" hostile email and said my goodbyes and suggested he seek help....what more can I say. I feel sorry for his partners in that store.

So I HOPE a slight Herx is trying to happen and I have a fridge FULL of that weird stuff YOU told me to get. Trish loaded us up Saturday. Made GALLONS of tea for me since I can't stand anymore and plus I began growing my own tea plants in the back yard. Have to ask her what is is. A neighbor friend who worked for our HOA Landscapers brought me some a few months ago. He used to watch me walk my 1 to 2 miles every single day falling down every few yards, getting back up and refusing to quit. Told me I NEEDED this the day I finally fell and never EVER got back up to walk again:-) I think he said it was a Chocolate Peppermint or Visa Versa?

Whatever is happening, WILL happen, I gight and I never quit till not some doctor tells me I am done, but till I know I am done. I have never yet a single time in this life EVER thought I was done. I got a bit close recently, not able to get up or walk or leave this chair. But now I get to TRY fighting back. I will see if, as long as I don't croak from natural causes or some Cancer or who knows that might be messing with me, how this fight goes. I fight very VERY hard and am just as stubborn as anything or anyone I ever met so I WILL make my presence at least very well known. I really never would have gotten off the ground with this group and all YOU have done for me. You literally picked me up, put me BACK into this chair, settled me down and put the bib on me and told me to EAT!

So here I go:-) And I just LOVE the Herb stores you gave me and had never heard of them. I love the pricing at less than 1/2 of the Cowden stuff and the beauty of THIS way of going about things, if there is anything that doesn't help, I am a LOT more able to move faster & cheaper to change and mix things up at far less loss in that transition. I love this side of the equation. You gave me the chance to fight harder and stronger with the savings this gives me. And nobody has yelled and me or gone nutcase over here yet either. :-) Geez, it really is NOT fun being called stupid and getting YELLED at when handing someone money making THEM rich. Hell, I have doctors for that!
Posted 8/29/2016 6:01 PM (GMT 0)
They have (the last huge large grapefuit sized in base of my spine AND the 1 in my left breast) all 3 turned out to be essentially safe forms of Lipoma according to lab testing. While "safe" I mean in regards to malignancy. But getting them dug our of you spine? NOTHING safe about that and they tell me that it is where the permanent paralysis began. I don't buy that and neither did my then primary care physician who sadly just retired. THAT was the greatest doctor! He just smile and said are you kidding? They won't even man up and tell you the truth, that it is THEIR foot of Titanium rods, plates and screws, combined with opening you up over a foot long and pulling that skin back another foot on EACH side and ripping you in half had NOTHING to do with permanent disability? Glad I'm retiring. And just shook his head Said they couldn't fire HIM for telling the darned truth. So I dearly miss that man.

All this aside, off you say it since just this morning I asked my wife if this might be just that case given so many things and that we used to go skinny dipping and hanging around in the bonnies around the local mountain and off roading areas for years till about 5 years ago when her Cancer began to be a problem we had to deal with. Guess we will always wonder. Just that I DID also have that rash or huge bite mark, along with throwing up and the whole nine yards after just last November that actually was SO bad I ran right to the doctor asking WHAT is this mark on me and why can't I stop throwing up? She said not to worry but had just began at the doctors that WEEK and moved here from China and didn't speak a lot of English:-) Man I DO have the luck ya know.
Posted 8/29/2016 6:23 PM (GMT 0)
There is some suggestions that Bartonella and Lyme can cause lipomas - but no hard science as of yet that they are connected. What we DO know though is that these infections seriously mess with the immune system, and that's where things go crazy.

Hang in there!!!
Posted 8/29/2016 7:04 PM (GMT 0)
Thank you for this bit of info. I have had a total of 53 tumors, mostly size of little peas until just a few years ago so always assumed Agent Orange and then my wife's Cancer surgeon who I actually MADE her go to after 2 others misdiagnosed her literally saved her life is the first doctor who suggested to ME it was A.O. I never heard of this Bartonella till a couple days ago. Do you know is anything I ordered MIGHT help with that? Or, or anything else that might if I didn't get it? We ordered (and I could likely call her to add it to save shipping?)
Here is what we ordered to start and will add anything else that might be useful. I will NOT skimp on this attempt to begin treating:

Item Name Description Qty Taxable Unit Price Item Total
-Japanese Knotweed tincture 4 o 00201 1 N $30.00 (USD) $30.00 (USD)
-Cat's claw tincture - inner bar 00191 1 N $30.00 (USD) $30.00 (USD)
-Eleuthero Root tincture -- 4oz. tginssi4(429) 1 N $38.00 (USD) $38.00 (USD)
-Astragalus root tincture - orga 40785 1 N $28.00 (USD) $28.00 (USD)
Shipping: $12.30 (USD)
Total: $138.30 (USD)
Posted 8/29/2016 7:06 PM (GMT 0)
First things first, get started on Lyme treatment. Once you are stable on that, and are no longer herxing, then you can add in Bartonella treatments. Things can get tricky when treating more than one infection, so we like to see members stable on one treatment before adding in any more. Just know that you could have Bartonella and will likely have to treat it if you have other symptoms that indicate it as well.

As always with these infections, one baby step at a time so that you don't overwhelm your body with toxins and too much stress. :-)
Posted 8/29/2016 7:12 PM (GMT 0)
OK thanks. I actually had the Bart symptoms for a long LONG time. But then 4 bullet/shrapnel wounds can ruin a guys day too. So much serious trauma to my spine and body you could never win any bet on cause of problems and I don't blame doctors on that given my history. Big wave surfing, crashing motorcycle at 156 MPH racing, the more I begin to think about all of it, I may just give my poor doctor a hug....Poor guy never had a chance.
Posted 8/29/2016 7:34 PM (GMT 0)
LOL! Well, hopefully, with effective treatments for these infections, your life will at least be a little more comfortable!! That's what I'm mainly going for. I don't want to be able to run marathons, but to be able to do a little yard work and gardening would be wonderful!!

Small steps can lead to big gains!

And, the doctors never had a chance with me as well, even though I haven't had as much "excitement" in my life as you have in yours.
Posted 8/29/2016 7:53 PM (GMT 0)
All I want is the strength to go out and scrape the surf wax off my wife's surfboard! The old BAT is turning 60 on Sep 6 and she will go out and humiliate all these hot shot boys on their best day, come home smug and make ME feel like the decrepit old fart I am. No respect, NO respect at all....

One time I fixed her and and mixed honeys into her home made surfboard wax. So she waxes the board and goes to bed that night. Hops up at 6 AM to head to the beach all excited, picks up her board and headed to the car and starts screaming. It had THOUSANDS of ants, most died from the toxins in the wax but the thousands left are literally in a feeding frenzy mixed with trying to escape:-) Yep, payback is a *****! And ya see, I STILL have "the spirit".
Posted 8/30/2016 6:09 AM (GMT 0)
Saying what you said and feeling your sentiment i have three herbal suggestions. ..houttynia for bart as traveler has said ...cordyalis for pain and maybe kratom tea for pain also...consider penicillin or rocephin shots you can do them a couple times a week..its 5 or 6 bucks a shot ...you can order them online my heart is with you mike ...bootstraps etc etc
Posted 8/30/2016 5:23 PM (GMT 0)
Thank you Blue-I am gonna be a GOOD boy as instructed bt Traveler:-) If I survive beginning myu first day of herbs tomorrow (Wednesday) and work UP to that as the folks here have instructed me. If Girlie hadn't warned me off by telling suggesting a safe formula, MY plan, born of complete ignorance was to take the entire protocol first day! I mean, FULL dose of all 3 major herbs all at once, first time. I had NOBODY warn or advise me I was crazy till I got here:-) So right off the bat, I was this site and so many here literally likely saved me a hospital bill or worse. No idea if these things can kill you but NO doubt could make me wish I were dead.

I would like to say, and HOPE this is allowed (if not-just remove or delete this-not sure of rules?) I chose one of the 2 Herb Stores I was told about by Girlie, to purchase my very first herb order. I chose sagewomanherbs dot com and can't tell you haw wonderful my experience has been. And since it's a secret, that's all bye bye....

Just KIDDING:-) (geez, maybe i'm already feeling better?) I placed my order late Sunday night, almost midnight. I get an email the next MORNING that it was shipping later that next day. It did and it arrived tomorrow. So I need to say, 2 days from ordering on a Sunday when they are closed to arrival less than 48 hours later? Pretty darn amazing to me and WELL worth the $12.30 or whatever it was considering her prices were even less than 1/2 the cost of that Cowden Protocol I had planned on trying. Nice thing about going this way is if I have some horrific reaction to any one thing I am not out a ton of money having an entire "system" of a dozen + bottles in front of me about to hit the trash can. I am just VERY happy and sure hope when I begin tomorrow around noon, all goes OK. Just have to decide on which of the herbs I should start with? My GUESS is (and as I understand it-just take small dose of ONE herb or Girlie is gonna smack me!), I should probably choose the Cat's claw tincture? I have the 4 below to choose from.


-Japanese Knotweed tincture
-Cat's claw tincture
-Eleuthero Root tincture
-Astragalus root tincture

This morning, just 5 or 10 minutes after taking my Doxy antibiotic I began throwing up BAD. So I think I will switch from taking on empty stomach to taking it WITH food. Today was day 6 on it and always had a super sensitive stomach since a little kid with an ulcer at age 12, bleeding ulcer at 15 (my dad was an alcoholic...)

So I am about to get started in earnest. Fridge is FULL of some special super duper yogurts and weird probiotic stuff Girlie told me of and my wife bought for me. On Sept 9 I get LOADS of stuff that we did the Amazon Subscribe & Save deal and saved an additional 15% but it doesn't ship 2 day Prime darn it. Began the weird (VERY weird to ME) dry brushing which cracks my wife up. What a strange ritual this battle with Lyme gives up. Like the insidious war on Terrorism that this world is engaging in now I suppose. I am pretty good at THAT so as I lean this enemy, it WILL have payback and a decent battle on IT'S hands.

I am more grateful to all of you for helping me transition from being literally abandoned by ANYONE in medicine about Lyme to a man with the tools to hopefully survive this mess. I wish I had found I had this before losing use of both legs and now both arms weakening badly too. But I take what I have and I adapt, I fight. All of you are people who need to know how MUCH it means to my wife and I to at least have tools to go out fighting and who knows, maybe I will even get better. I hoe so but if I can do nothing more that prevent it from worsening, Ill take whatever I can get THANK you, all of you crazy people with all your plants and crazy brews :-) I TRIED to order me a Witch Doctor but Amazon was all out....
Posted 8/30/2016 5:31 PM (GMT 0)
Just so you know, it's not the herbs that could send you to the hospital, but your reaction to them, and it's usually because it's set off a massive herx, which is a cytokine cascade that has started and that can be deadly if it's allowed to just get worse.

However, you do need to be aware that allergic reactions to herbs do occur - so be on the watch for that. Allergic reactions usually have the typical allergic responses, with hives, severe diarrhea and so on.

Personally, I would encourage you to start with the Japanese knotweed. It's anti-inflammatory. :-)

I'm not sure if you bought tinctures or pills, but if it's tinctures, start with just ONE drop the first day. Be sure you are detoxing!!!!

Hope is an amazing thing! I too was without hope a few times with these infections - yet someone on this forum would always have suggestions that I could at least check into, and if it didn't pan out for me for some reason, it would often lead me on to something that would!!

Hang in there and do please let us know how things are going so we can give you more hints and tips on how to deal with things!!
Posted 8/30/2016 5:38 PM (GMT 0)

Simon Templar said...

lucynethel (OR Just Mike) said...
I TRIED to order me a Witch Doctor but Amazon was all out....

You can contact THIS GUY and see if he makes house calls.

SEMPER FI!

Bwahahahaha!!! If I thought he could honestly heal me, I just might!!! LOL!
Posted 8/30/2016 5:42 PM (GMT 0)
Thanks so much-ALL that I bought is the liquid/tinctures form. I am unsure if it is less or more effective or the same? But it SOUNDED a lot easier for me to control? And I will to the inflamation herb as I am LOADED with it.

Biggest fear I have is this word detox. I hope I am already doing it with the foods I eat, liquids I drink but it remains my GREAT MYSTERY. I only equate detox with a drunk or junkie so need to study this part heavily.

We have a hot tub but I keep the temp down to around 89-92 degrees and use it to cool OFF, not sweat so not sure it would help. Try to use that to help control horrible back spasms and I can sort of exercise in neutral buoyant atmosphere. LESS pain. YOU mentioned Alka Seltzer GOLD? How many times a day would you suggest I take that and is that enough? ANY suggestions on detox for ME have to weigh in I don't fit in a tiny bathtub and am so weak can't get out of the thing. My tub all have the steps, rails etc so much safer but not hot. I can stand but ONLY if holding onto something so major disabilities prevent any hardcore strategies.
Posted 8/30/2016 5:44 PM (GMT 0)

Traveler said...

Simon Templar said...

lucynethel (OR Just Mike) said...
I TRIED to order me a Witch Doctor but Amazon was all out....

You can contact THIS GUY and see if he makes house calls.

SEMPER FI!

Bwahahahaha!!! If I thought he could honestly heal me, I just might!!! LOL!

Nah, reminds me too much of my EX wife....
Posted 8/30/2016 5:47 PM (GMT 0)
Tinctures are really great to start with, as you can control very low doses right away and easily. When you start to take large amounts of tinctures (a couple of droppers full daily of each) then it becomes much more reasonable to switch over to the capsules in order to continue with the higher doses.

LOL! I understand the confusion with detoxing, but we do it completely differently. We want you to help your body detox it's organs, but it's from things that your body is holding on to - not alcohol or "street drugs". This is an awesome listing of detoxing routines that most of us here use: www.tiredoflyme.com/detox-methods.html

For example, I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed,
I use a foot soak,
dry skin brushing,
Lymph massages as needed,
making sure my bowels moved at least once a day (sorry if it's TMI!)
pushing myself to drink at least 64 ounces of lemon water each and every day,
liver/gall bladder flushes (all natural) as needed,
Apple cider vinegar,
Quercetin,
oil pulling with coconut oil and a few drops of tea tree oil,
using Yogi brand detox tea,
taking activated charcoal (when necessary),
and keeping the amount of stress in my life at a bare minimum.

But, there is such a thing as over detoxing, which can bring on a herx as well. Most of our toxins are in our tissues/organs, not in our bloodstream, so we have to do methods that will help 'release them' and move them into our bloodstream so they can be detoxed out. Over detoxing is when we move more toxins into the bloodstream than can easily be detoxed out by our body. So there's a careful balance that we must maintain between killing bacteria (which creates more toxins) and detoxing so that we can still be functional.This is why we suggest adding in more detoxing methods slowly (no more than 1 new routine every 3 - 5 days), and stop adding in more when you seem to be feeling okay or good. www.tiredoflyme.com/4-reasons-why-you-still-feel-bad-despite-detoxing.html
Posted 8/30/2016 6:15 PM (GMT 0)
Mike - Tinctures are a good choice. As Traveler said in her post - you can take tiny amounts to start..

I wanted to comment about your doxy on an empty stomach. Don't do it. You should be taking it with food. That one antibiotic is hard on the stomach.

So, please take with food. But, not with milk. Can't take it with calcium.


...and do not expect to feel better today...it may take awhile...sometimes a long while.

The detoxing is crucial...to feeling better.
Posted 8/30/2016 6:23 PM (GMT 0)
NO such thing as TMI as to me at least and my wife-I am now in the phase of literally, fighting for my very life. ONLY person not on my case for tying this is my primary care doctor who readily admits he knows NOTHING of Lyme but is on a crash course of checking a dozen links I gave him. At least he is honest. My Neuro who I fired just last week at his office got another office visit authorized as an EMERGENCY so he gets his $10000 fee! The real clincher? This "EMERGENCY" visit takes 4 MONTHS plus cuz he is so "busy". NOT going back since his words were "oh don't worry about Lyme at this time". He lost me then and there along with his referring me for $2500 PLUS in new lab work for Pre-Cancer blood testing something or the other. I WISH I had Cancer. (NOT kidding here either sadly). Just so I would have a date as to when this inhumane SUFFERING and pain management doctor visits each month could stop with it. My wife could go back and try to reclaim HER life after hopefully, moving on past her Cancer.

Just a couple things if/when you have time?
Lemon Water. Do I need an actual real LIVE lemon like I use juicing? Or cheat with something "processed" in a plastic lemon shaped container from a store cuz I am a lazy no good rotten lazy bum kind? How MUCH lemon in each glass?

On Sept 6 when about a dozen miracle things arrive from my subscribe and save account at Amazon, I also bought
-Vibrant Health - Green Vibrance - Plant-Based Daily Superfood + Probiotics and Digestive Enzymes, 60 servings (FFP)

and:

-Doctor's Best Best Ubiquinol Featuring Kaneka's Qh (100mg), 60-Count
from Doctor's Best

Just wonder if you have any knowledge of either product? I am keeping them to try no matter but sure hope to find they help a little. Mostly, with my hyper sensitive gut, do NOT want to add 100 drops then fall to the ground screaming like a baby:-)

And afraid I will use alka seltzer too much and start "zooming" around the house and scare my lil Dingbat too
Posted 8/30/2016 6:28 PM (GMT 0)

Girlie said...
Mike - Tinctures are a good choice. As Traveler said in her post - you can take tiny amounts to start..

I wanted to comment about your doxy on an empty stomach. Don't do it. You should be taking it with food. That one antibiotic is hard on the stomach.

So, please take with food. But, not with milk. Can't take it with calcium.


...and do not expect to feel better today...it may take awhile...sometimes a long while.

The detoxing is crucial...to feeling better.


Thank you for this since I likely WOULD have taken it with a full glass of milk to coat my stomach.
Ya know, I simply can't IMAGINE how just one single drop of ANYTHING can make my old body end know it is there? I know everyone here says the same thing but I swear, it seems like at LEAST a heaping teaspoon would not even be enough? Just find it inconceivable that a drop, a tiny little, oh so LONELY drop, could hurt big ole me:-)
Posted 8/30/2016 6:34 PM (GMT 0)
I prefer to use a real lemon - I buy organic lemons...I don't buy everything i eat in organic...but the lemon for my detoxing I do.- I squeeze drops into some of my glasses of water during the day. Probably works out to 1/4 tsp for each glass.
Usually 2-3 glasses of water I drink have lemon in them.
I sip through a straw (unless I forget) as it can damage the enamel on the teeth. Try to remember to rinse mouth after in clear water (for teeth )

People have posted that they buy the bottled lemon juice.

I don't know anything about the Green Vibrance - but it sounds good.

Doctor's Best Ubiquinol - does it just have CoQ10 in it...or other things?
CoQ10 is very good for you...try to take it with fats or oils for absorption.

I only use the Alka Seltzer gold once a day...I'm not sure how often others take it.
Posted 8/30/2016 6:48 PM (GMT 0)
On the Doxy, I would actually suggest that you 'sandwich' it with your meal. Eat part of your meal, take the Doxy, then finish your meal. That way your stomach is protected just as much as possible. Just remember, the meal can't have dairy if you do this due to the calcium - Doxy interaction.
Posted 8/31/2016 6:44 AM (GMT 0)
I agree with trav..it maybe all barts fault ...so consider bvt its like 10c a bee and its funzies ...
Posted 8/31/2016 12:55 PM (GMT 0)

Girlie said...
I prefer to use a real lemon - I buy organic lemons...I don't buy everything i eat in organic...but the lemon for my detoxing I do.- I squeeze drops into some of my glasses of water during the day. Probably works out to 1/4 tsp for each glass.
Usually 2-3 glasses of water I drink have lemon in them.
I sip through a straw (unless I forget) as it can damage the enamel on the teeth. Try to remember to rinse mouth after in clear water (for teeth )

People have posted that they buy the bottled lemon juice.

I don't know anything about the Green Vibrance - but it sounds good.

Doctor's Best Ubiquinol - does it just have CoQ10 in it...or other things?
CoQ10 is very good for you...try to take it with fats or oils for absorption.

I only use the Alka Seltzer gold once a day...I'm not sure how often others take it.

Yes but this is the PURE form and only form absorbed if you are over 60. So it is around double or more the price of CoQ10, but the only type that will help me.
Posted 8/31/2016 2:11 PM (GMT 0)
Welcome Mike,

I'm sorry for all that you have been through. I appreciate your personal courage in this battle and your bravery in serving our country. Thank you for that.

I am pretty new to this board but the 'lyme angels' have saved me. Not sure if you believe in prayers but I am sending some your say. You sound strong and kind. I'm sure you wife is happy to help you and wants to care for you. I have learned there is no judgement on this board but try to hang in there. Try the herbs. If you need help with anything post it here. I will be happy to send you herbs if you need them. Seriously.

Prayers to you Mike. The veteran posters know a lot about lyme and are smarter than any doctors I have been too - heed their advice!
Posted 8/31/2016 5:24 PM (GMT 0)

Huddie said...
Welcome Mike,

I'm sorry for all that you have been through. I appreciate your personal courage in this battle and your bravery in serving our country. Thank you for that.

I am pretty new to this board but the 'lyme angels' have saved me. Not sure if you believe in prayers but I am sending some your say. You sound strong and kind. I'm sure you wife is happy to help you and wants to care for you. I have learned there is no judgement on this board but try to hang in there. Try the herbs. If you need help with anything post it here. I will be happy to send you herbs if you need them. Seriously.

Prayers to you Mike. The veteran posters know a lot about lyme and are smarter than any doctors I have been too - heed their advice!

Thank you so much. I did not believe in prayers, God, or anything or one but myself after War. For over 40 years I DID believe in treating all I met with kindness, respect and loved all I could for over 40 years after losing my faith. A strange event occurred to me a few weeks after my 6 spine fusions were all done, the Mastectomy was done, the massive Seroma was finally closed on that second surgical attempt after the first mutilated me and was botched. I was told my body had just experienced too MUCH to ever recover but try as best I could to at least walk up and down my street with the most horrendous back brace you ever saw and was told to use the walkers I had bought and just do whatever I could. Well I was falling, falling, falling. Bloody, I kept getting up and falling back down. I came one day and DID say a prayer and what happened next I would never tel anyone but my wife, and nearly didn't tell her out of fear of an insanity image popping into her brain. But it wasn't any big or dramatic event, but everything changed.

I bought Trekking Poles so I would no longer be hunched over that darned walker. I clutched those Trekking Poles for dear life and off I went. Tool me 6 months to get past the to the mailbox and back disappointments. I got to 1 mile in a year, 3 more months and I did 1 mile or 2 miles every single day. PERIOD. I only missed one single day in the next year, last year when it was 102 degrees and my Fentanyl patch released ALL of itself into me due to that heat and nearly killed me. I then had to go at dawn for my walks ant monitor my body temps of could literally die from my pain drug nightmares. This is just ONE reason I despise pain meds. Used to arrest idiots on drugs but now I was just another drug addict myself. I just had a prescription and I still look at it with that disdain...

6 or 8 weeks ago when I collapsed suddenly and could never do a walk again, loss of use of my arms began suddenly too so my Primary care Doctor panicked, got me a Neuro who did all the MRI, CT for FULL back AND brain. Found no MS lesions no tumors but those test never DID see my massive grapefruit sized tumors anyway so these test do NOT mean a lot to ME anymore. They have found nothing. AL those test, all those labs until 8 days ago when I was read that they DID test POSITIVE on 2 band-39 & 41 but was told, not to worry about that for now. That was when my wife and I both walked out and walked away. My Primary doctor was livid about WHY they didn't do something! He begged me to begin IV Antibiotics but I convinced him to let me just do a 28 day course of Doxy so I could be home and begin MY own quest outside this box of idiocy that has failed me. And so I do now pray even though one miracle was granted me as I DID walk again for 1 1/2 years until this Lyme or whatever it is inside me took me out for good. I STILL did experience nothing less than a miracle I DO believe in. I don't really know if I believe in any God, or Devil, Heaven OR Hell. I don't know if we humans and all the other living creatures around me are just some little "garden" planted by space aliens or WHAT:-) I honestly don't care. I sort of believe when I go there is flat out NOTHING, having seen so MANY die around me, beside me, everywhere I looked once....I am left with ONE single core beliefs still. Care for everyone you meet because I KNOW just how precious life IS. I have seen life begin AND end. Far too many times. I sort of think MY Heaven is maybe simply a piece of whatever I left behind. If I made anyone feel better for a moment when perhaps they were at the end of it all, then good. I just hope to be an honestly GOOD person till my last breath. That is good enough for me. So please DO say a little prayer for me? I am honestly pretty darn scared and about to start my very first herb dose in about 30 minutes when my mail arrives. My arms, in just the past 4 days have begun to become VERY marginalized and beginning to do as my legs have. So I wonder if I will wake up a quadriplegic every morning or roll over in bed and never be able to do even that again on my own soon? I am afraid the massive tumor has returned in my lumbar area but who knows? My doctors sure don't. I DO believe in prayer of late as I said so maybe say 2? I appreciate more than you know and we can afford whatever I am able to use right now and I really am skeptical that something SO simple could really give me back use of arms and legs? I don't know if I am too far gone of is anyone THIS far down the road can BE helped at all? Hell, I MIGHT actually be borderline terrified instead of scared. Now that I really think about it? So thank you so much as I head for that maibox to get my first "dose",
Mike (up ALL night thinking about THIS day)
Posted 8/31/2016 5:58 PM (GMT 0)
Mike,

My eyes are welled up reading this. I absolutely believe your story. I am going to go do my daily meditation (which by the way, really helps with stress/fear) and will be saying a specific prayer for you Mike. You and your story are inspirational. I feel silly now with the complaints I have had with lyme on this board. You are a true warrior, and the story of falling down and getting back up is beyond metaphorical. I cannot believe all that you have gone through. I have read about many people who were paralyzed from lyme and walked again after treatment. People with dementia who found out they had lyme and their symptoms turn around. So it does happen. We all believe in different things. I will share a story that will make me sound crazy. Since I was about 16 years old I would have premonitions before a loved one died. My family thought I was crazy but it happened so often they grew to believe it. I have spoke to my father and grandfather from the other side and I just know there is more than here. I have had visits from angels too. Sounds crazy, and I certainly don't discuss this in mixed company, but why wouldn't there be more than we know about. You are not alone and I believe they are listening. But we do have to ask. If you have the energy please keep us posted on how today goes. I'm sure the lyme angel-experts on this board have explained not to do the herbs too quickly - you can feel pretty lousy if you do. Thinking of you Mike. Hang in there.
✚ New Topic ✚ Reply
123