Saw IDS - what a waste

I am new here and am too tired, sick, in severe pain, and frustrated to get into my history or latest story - at the moment. I am in CT and need a LLMD. All I can say right now, is HI - and I hope you all feel better. I was told by the IDS: "Be careful not to get involved with and listen to these people in the groups online." So HERE...I am!!!

It's like they don't want you to educate yourself. But they can't give you any answers as to what is going on....Really ticks me off.

Sorry to hear of your experience and that you're not feeling well. You definitely found the right spot for healing advice. The people here are wonderful, compassionate, and knowledgeable. Hopefully you'll be on your way to feeling better soon!

I have sent you a couple of names.

You would think that in one of the hottest Lyme spots in the country, all MD's would be on board with proper knowledge. Apparently not.

I've directed you to our intro which has an excellent suggestion on detoxing to remove, not only the toxins from dead bacteria, but also other unwanted gunk backed up in our bodies that might be overwhelming our natural ability to get rid of them all.

A quote from the topic with just one sample of what you can do:

"One of the most popular sites lately for information on detoxing for Lyme patients is:
www.tiredoflyme.com/detox-methods.html It's a wonderful listing of detoxing routines that has been built around recommendations from Lyme patients!!

Herxing is when bacteria dies - it creates toxins. Plain and simple.

Where do those toxins go? If a person does not detox on a daily basis, they stay in the blood, joints, tissues, colon, everywhere and cause so many problems. Thus below are detoxing instructions:
*****************************************************
Edited to add from Traveler:
For a foot soak - which is sometimes easier to fit in your day, although it's not as effective. It's still better than not doing it at all -
I use 1 & 1/2 and up to 2 cups of Epsom salts and 16 ounces of peroxide and soak my feet for 20 minutes.

For the full bath, use 3 - 4 cups of Epsom Salt and 32 ounces of hydrogen peroxide and start with no more than 7 - 10 minutes in the water to start. You can build up to staying in the water for up to 20 minutes, but please start off very slowly!! This has the potential to make you herx if you rush it. smhair


This was just one method, there are more listed in that part of the intro, plus you can go to the link shared.

Post Edited (julymorning) : 12/6/2016 2:49:13 PM (GMT-7)

"the people in these groups". hahaha, like we are lying and delusional or something.

The people "in these groups", provided me support, countless knowledge, keep my sanity, my morale. Their insight, knowledge and support is the reason why a year later I'm 90%+ symptom free.

Doctors knew nothing. I would have went down all the wrong paths without "these people" in "these groups" and would never have bounced back the way I did.

Rikky1 - I have a current story...and a 30 year back-story. The current story involves a tiny scab in the middle of a big bruise right below my left kneecap - that I let stay on me for over 72 hours...because - I THOUGHT - it was a scab. I did a bunch of leaf work, here in CT (about 45 miles from Lyme) on the Saturday morning before Thanksgiving. 24 hours later I had pain in my knee and tried not to whine about it and went about my day, where I was on my feet until about 6pm that Sunday evening. I had what us ladies refer to as "Skinny Jeans" on... and my knee felt like it had been hit by a sledge hammer.

While sitting in the car on my way home that evening, I said to my friend (the driver): "God - my knee is killing me. I must've smacked it around on something or walked into a table, or - I don't know what. Do YOU remember me whacking myself on anything?" She couldn't think of anything and I rubbed the area underneath the tight "Skinny Jeans" where I felt a big swelling and what I thought was a wound in the center and said: "Jeez - I DID really whack myself this time, it is very swollen and feels like I even BROKE THE SKIN!"

She dropped me off and the minute I got inside I changed out of the tight jeans and switched to sweat pants. Then I took a peek. I saw on the very top of my shin, right below my kneecap - a big, warm, reddish, swollen patch - with a tiny scab, smack dab in the middle. The tiny scab had a very thin outline of red blood. It hurt like Hell. within an hour I started to have violent and sudden head spinning and bed spins and got really scared. I went to bed and the knee pain and spinning continued into the next day. Also, I began to get a really bad headache that lasted all day and night of that Monday.

On Tuesday morning I was sitting in the car having morning coffee with my husband and I had a look at my "injury". The puffed up part was still big, hot, and red - but the "tiny scab" in the center looked like it was about to flake right off! So I went to BRUSH it off and instead??? I was horrified to discover that I had to PULL IT OUT...and that it had 8 tiny legs and crawled on my hand. It was black, the size of a sesame seed and the legs looked very short. My husband saw it and then I dropped it in the car by accident, because I was so freaked out. I'm pretty sure it was a nymph.

Went to the ER because my PCP was booked and there was a small pouch of gray liquid covering where the deer tick had been and the PA knew nothing, and said it was "healing nicely". I explained that there was nothing to heal and that there could be a mouth in there and that what he was seeing was a grayish fluid pouch and not a scab at all - and he just ignored me. He prescribed 200mg of Doxy a day for 21 days, took a Lyme titer which he insisted would be negative and I agreed and KNEW that it would indeed be negative.

I will explain and describe - the HELL that has ensued since the ER visit - very shortly. Have to take a break - but wanted to let y'all know the lead up, to my current condition.

Welcome to the community dismissed! I too had a wretched experience with an IDD. Horrid. If I had listened to this person, and not taken right action, I'm sure I'd be bedridden - or dead. I was so, so, so sick. Ha, ha, ha - don't listen to those people on the boards - what a dweeb! While many of us continue to get better as a consequence of these boards and with some of us ONLY HAVING these boards because they didn't test CDC positive for lyme and a LLMD is out of their budget range - choosing to invest in treatment rather than Dr.'s

You can do this!

Go slow and steady!

We're rooting for you and I have utmost confidence in the fact that the universe is conspiring for your return to health.

Here is my welcome to the community blurb I've drafted.

Welcome to the community dismissed!

You are finding this place just as I discovered it in January of 2016, when I thought I was dying. My primary means of support for figuring this journey out has been here, and I am 85-90% better going a mostly all herbal route without the means to afford an LLMD.

Here is a nutshell of what I've learned and hope you find it helpful. In my view, a KEY thing is to check in with regard to what pops for you, or resonates, or peaks your interest. Make a note of it somewhere you can find easily to look into further. I am not a Dr., this is anecdotal and passing on what I have learned via experience.

COLLATED INFO
Here is a GREAT collated bit of info that was compiled by this community. You'll find it the top thread in this lyme forum.
www.healingwell.com/community/default.aspx?f=30&m=1606610

SCREENING TOOL
For me, one screening tool I found, developed by a Dr. who has treated thousands of patients, convinced me to pursue a probable lyme and co-infections scenario. My blood work was initially negative, but it turns out I had symptoms galore as well as "exposure." I'd recommend taking this test if you are question whether what brought you here is due to a tick borne infection.
www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

If you score over 45, then Dr. Horowtiz suggests discussing the results with your Doctor. Mine was something like 100. Now it is down to 38.

CLINICAL DIAGNOSIS - BLOOD WORK
For blood work, it isn't reliable, lyme is a clinical diagnosis based on exposure and symptoms. Blood work is used to support the diagnosis. Not all blood work is the same. If you DO do blood work - using a lyme lab is recommended - IGEN-X is often recommended. It requires a Dr.'s signature. If you DON'T have a Dr. who will sign a form for IGEN-X, there is a firm you can order through that I used, best investment I made! I used True Health Labs. It is around $350. I ordered the Basic Lyme Panel.

LYME LITERATE DR. - LLMD
If you are on a tight budget, and can't afford a lyme literate Dr. (initial consults start at $600 on up into the thousands with not all covered by insurance) it is possible to figure it out with an herbal approach, if your body responds well. You can hire a consult with a professional herbalist for $200, in my experience. So, this route is the cheapest route to take.

TAKE RIGHT ACTION
As soon as you suspect it, I'd take right action! It can take a coons egg to get diagnosed and finding a lyme literate Dr. also takes time. There are simple steps you can begin NOW. My path, I started with nutrition, then herbs, then paid out of pocket for consults and blood work to confirm my suspicions. Here are three simple steps you can take now.

ONE: nutrition - NO SUGAR, NO ALCOHOL, NO processed foods, many benefit also from no caffeine, no dairy, no gluten. If it is a bacterial infection you want to create an environment they don't like. I began with a loose paleo diet, then began to do an anti-inflammatory diet, and then, tried GAPS for a bit. Here is a link about the Wahl's Paleo realfoodrebel.com/wahls-paleo-diet-for-lyme-disease/. Choose what works for you! I also benefited from Dr. Weil's anti-inflammatory nutrition pyramid. www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/

TWO: consider herbs to start with is what someone advised me - Stephen Buhner, love his approach. An infamous moderator Traveler uses chronic tonic. I liked Buhner because it was the least costly and I could begin simple and work my way into the complexity. The herbs to start with I used were Cats Claw (which I got at a health food store) and I ordered Japanese Knotweed from Buhner's suggested source.
greendragonbotanicals.com/products/medicines/japanese-knotweed.html

Free Buhner info here: I eventually bought his books.
Website with info:
buhnerhealinglyme.com/the-protocols/
Some great collated notes:
www.betterhealthguy.com/images/stories/PDF/BUHNER%20CONF%20NOTES.pdf

THREE: If it is lyme and co-infections, detoxing will become a familiar term as will "herx" reactions.
Favorite Detox link
www.tiredoflyme.com/detox-methods.html
Description of a "herx"
/chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161

My favorite detox methods.
Sauna at the gym (I was too sick to go the gym at first)
Lemon in my water
1 tablespoon of Bragg's Apple Cider Vinegar in my Water
Charcoal tabs taken 2 hours before I eat something, and don't eat for 2 hours after
dry brushing
Epsom salt bath: 1 cup epsom salt, 1 cup of sea salt, 1 cup of aloe vera juice, 1 cup of baking soda
You can do foot soaks as well! and use just straight epsom salts
Massage (can't afford it often)

IDD: Infections Disease Dr.'s
Don't waste your time with an infectious disease Dr., in my view. They stand on the side of uninformed and mis-information when it comes to this concept of "lyme wars." Others warned me about this but I had to experience it before I understood. It was a horrible experience. It has to do with the "lyme wars" This link explains it well.
www.chelseagreen.com/blogs/welcome-lyme-wars/

BOOK
Books I would recommend - you may be able to get it at your library
Stephen Buhner's - Healing Lyme [urlhttp://www.gaianstudies.org/Bookstore.html
Richard Horowtiz - has a new book coming out - How Can I Get Better http://www.cangetbetter.com
I bought the first addition - got a lot out of it. Why Can't I Get Better?

FREE instant info I found useful about treating lyme.
www.lymenet.org/BurrGuide200810.pdf

Thanks everyone - for the invaluable interest, input, suggestions, links of info, and support - that you have all given me so far! Please don't lose patience with me as I want to finish my current story ...and then tell you the back story. It is just that I currently have "spinal tap quality headache" and "meningitis neck" - among so many other curses. Please, please bear with me - for I WILL explain much more just as soon as I can see a little straighter!

dacarte3 said...

k07 said...
Really ticks me off.

Pun intended?

lol, didn't even catch that one.

Just a couple of quick questions - in case anyone knows the answers. Then I will come back on tomorrow to explain further. If a person does not have Lyme Disease, will he/she get the bulls eye rash? Also, if a person does not have LD will he/she get a terrible, never ending migraine level headache, "meningitis neck", a spinning head, severe knee pain, severe shoulder pain, random sharp, shooting pains in the chin, chills, night sweats, blurred vision, neurological pain and attacks down arms to hands, foot pain, a brain cracking sensation, nausea, etc. - while on Doxycycline? At first I wondered if I was allergic to the abx.

Those symptoms are so random that if they were NOT Lyme, you'd be diagnosed with Fibromyalgia, which in probably 75% of the cases (or more) are actually Lyme and or one or a few co-infections.

The bulls eye rash is not really like anything else, although it can be mistaken for ringworm.....which does not in any way produce those kinds of symptoms.

There are other infections you can get from a tick that cause some of those symptoms.

Grab a piece of paper and a pen and look over the chart on this link: intheknowwatd.com/wp-content/uploads/2016/05/9z-comparison-lyme-disease-and-co-infections-symptom-chart-1.pdf

Try that again...

dismissed - awesome ER doctor to note it was a Herx reaction. Good for you for staying on the abx!

dacarte3 said...
To echo others, there's no debate here. Bullseye rash + symptoms = borrelia and possible co-infections.

You can close the book on trying to figure it out.

Bulls eye rash with no other symptoms also is Lyme Disease.
Just wanted to clarify that no other symptoms are necessary for a disgnosis.