physically and emotionally exhausted

I know exactly how you feel. I will try to come back and talk with you more when I have more energy. I have probably had it ten years. Lost twenty year career wen finally had to quit due to being too sick. All friends and signuficant other left me. It has been very hard. Im glad you are here and can find some support from others that have walked this path and can relate.

Hi AbbysLymesux,

Welcome to the forum! I see this is your first post, you're in a good place

I don't know if you have read the thread on top of the Lyme page 'New to Lyme?... Start here!'? It's packed with usefull information about testing, different treatment options, detoxing, interesting links, etc.  A must read if you haven't yet.

Getting diagnosed is the first step in getting better, please keep that in mind.

Are you seeing a LLMD? If not, you can post a new thread 'Looking for LLMD in____'. Be sure though to enable your email address, so that members can send you the needed information. We are not allowed to post dr's names on the forum, it has to go by pm.

Are you getting treatment? If so, what is your protocol?

I will be 35 soon, and have been ill since I was 15, probably bitten before that. The constant pain and isolation are very hard to handle, I completely understand...

There are some natural supplements that you can try for pain.

Turmeric and Boswellia are 2 of them. They do a great job for many of the people on here. If you're looking for a combined supplement, you can get Zyflamend, it works for pain and inflammation.

Can you define your pain? Is it located in your joint and/or muscles, or is it neurological pain? Or both?

Syndrome of a thousand paper cuts... never heard this, but well said...

Hold on, you have found a good place for advice, support and venting.

MarieLS

 

Thanks for all the quick responses.

So yes, I'm seeing LLMD. My sis and 3/4 of her kids have and now my mom too. We all see the same doc in NJ. Zero personality but he gets results.

I've switched atbx a few times, also taking diflucan and Cat's claw (poa phytolens from Biotics). Abt to start oregano. I also take 2 allergy meds, 2 antidepressants, Adderall, prevacid and Vimpat for neuro pain. Vimpat is anti-seizure drug that helps w diabetic nerve pain. Does anyone else here take it? And 2 nasal sprays for allergies. That's just the daily stuff!

When I need, I take ambien, Norco, zanaflex, klonipin, Levsin and others. And I smoke green stuff so that I take less of the addictive meds. I've been on so many meds for so long that it's so hard to tell what even works. The chicken/egg and symptom/side effect thing.

I know I'm super lucky that I don't have the babesia or other coinfections. I've had Epstein barr since college and feel like I've been in an active stage for at least 5 yrs now.

In 2007 I was hit by a cab in NYC because feeling like crap almost every day wasn't enough. Then tore shoulder and needed surgery 2010.

Now pain is every day and almost all day. I do have multiple herniated discs, nerve compression, dental issues, enlarged lymph nodes causing ear/face pressure, a congenital foot deformity (ankle probs), a numb thigh, sciatica tender spots etc and all the other usual Lyme symptoms like sinus infections, joints that ache for a month and then travel to another joint etc. And my body loves to make cysts, boob, uterus, ovarian, shoulder, salivary gland...

I hate admitting this but I eat like crap. No fast food or anything really unhealthy/greasy but I'm a sugar/carb/starch addict and doc just reminded me that if I don't cut most of it out I'll never feel better. I'm so used to eating cereal or Ellio's pizza for dinner, or blueberry waffles w soy cheese sammich.

I also see pain doc regularly for my pain meds but since we can't do cortisone trigger point or spinal injections any more I'm taking more Zanaflex and wishing I could sleep all the time (as if I get decent sleep, ha).

I'm living in my own little hell and apparently Social Security wants to keep kicking me down before approving disability. Instead of wasting 2 years making a decision they should just spend a week with me! (or look thru all my web posts tweets etc!)

Thank you so much for listening/reading and letting me vent. I'd probably break the internet if I whine too much at once!
Abby

I'm sorry your feeling down and your suffering. You gotta look at the bright spots in life, though there may be few...and carry on and fight this dark cloud that hangs over you (and us all).

I wish you happiness..and it will come...you just gotta have faith it will.

The good test on the fridge is a great idea. So is good stuff in the fridge...

Since you love your carbs perhaps you can start improving your diet by adding healthy produce to your "fix". Try really hard to get 5 servings a day of different colored plants.

 Berries are a huge plus. Pizza is a natural for onions, mushrooms, olives, roasted tomatoes, even pineapple. (Yes, I'm Californian.) Add a salad to your day with whatever else if you can. Maybe you can put pecans and blueberries right in the middle of your sammich?

Flax seed, ground up, is easy to sprinkle on most anything. Health food stores will have ground up nuts and seeds and a couple spoons full of any is a good thing. It doesn't take a lot per serving to begin to make a difference. Hemp seed is a powerhouse for magnesium and manganese. (Brain food.)

Some of your crummy health almost certainly is tied to the crummy diet. We have to have all the building blocks to operate right. Our building blocks are vitamins, minerals, phytonutrients, things that we could find in our food when we were still wild. (No, not when we were seniors in high school...) White flour really has had most of the good stuff stripped out, then it is BLEACHED, and some good stuff is added back again. It's like the android of the food world. Only sort of food....  Doesn't stop it from being yummy unfortunately.

Rather than trying to give up what you love to eat and go cold turkey (so to speak) just work in extra things that are good. Start with the easiest, and your favorites. I love pre-peeled carrots and bagged salad because they are no fuss, and I'm allergic to carrot peel...duh, what? Berries come frozen year round, an apple even every other day can sure help keep the doc at bay.

I'm on a very small budget so I go for things under a buck a lb. usually, but splurge a bit on berries and cherries. If you buy what's in season it helps keep the price down. Frozen produce goes on sale and I stock up. Healthy eating is way cheaper than the doc and it really will give you a better chance of fighting the destruction going on inside.

Don't forget GARLIC unless you are on blood thinners. Garlic is a natural antibiotic, antifungal, and even antiviral! It'll kill a lot of things, just serve it to those you hang out with too when the chance comes up.

As for docs in denial, is there a virus going around that stops up ears and closes minds while giving distinctly pig-like heads? I think it was sent out spread all over a sample medicine package that came with a promise of Hawaiian vacations for the top prescriber. Kind of like a Mary Kay or Avon sales incentive.  "Hey Joe, how can we make sure no doc will admit Lyme is in their county?" "We'll infect them with Swinenoggin Obliviosa. We can tempt them to handle our carrier media with this neato ad gimmick! What product should we push?" "I think they'll all be willing to prescribe for stress induced issues, let's tie it to a sedative!" "Excellent plan. We'll get 'em all!"

No, really, I'm never flippant or sarcastic....

 

wow, so many ideas. I guess I'm not detoxing if I don't know what it is. Was trying to print out the newbies start page to highlight stuff, share w mom for her lyme and for dad for his lack of empathy! Then printer had issue, computer had issue etc and my brain exploded/imploded.

Nice to see I'm not the only one who uses an abundance of sarcasm (humor, flippantism) to try to deal with this crap.

Ok, so diet...

I lost much needed 10 lbs last summer and refuse to put it back on cause I can barely afford new clothes in smaller size! I'm always avoiding anything unhealthy so I'd rather eat a bag of carrots w pretzels instead anything that requires effort. I'm a big fan of protein meal bars etc.

I do have bagged salad, apples carrots, cottage cheese and other basics. I just don't have a car and don't get to store too often (mom brings groceries sometimes) so fresh food isn't always easy. Huge fan of frozen veggies.

Here's the tough part, I can't tolerate garlic. Sometimes I can eat a slice of pizza one place and be ok, other times get sick. (It's worse than lactose intolerance) So that's a HUGE factor into why I always go for sweets. I can't get any premade frozen or convenience food cause they always have garlic. So I grab blintzes (cheese most often) and blueberry waffles and coconut sorbet (love). I do pay huge attention to fiber and love my gummy fiber yums but again it sugar!

I know what I should eat and what to avoid, but for years that has always included my carbs because plain carbs don't have garlic. I know if I start cooking more I'll eat better and then have more energy to cook/clean more but I'm in that stuck like a deer place. After doc last week mom said I should stop worrying about money when it comes to eating for my health and that I can order in food more often.

the other day my groceries were delivered w oreos that I didn't order but lets just say, I ate a whole row. Then next row only ate creamy part. This morning I sprayed w windex in the trash.

I had a 2nd date planned last night and he cancelled to say still into ex gf. I think I've been numb/medicated/stoned since. I didn't date for most of 5 years because I can't emotionally deal w the rejection. The problem is that I'm still getting older and there's less and less guys out there. DUH.

My head is ALL over the place and I should probably proofread this but I'm sure you'll get the gist.

Hi Abby,

I'm in the exact same boat. Dam* it anyway. 43 years old, have had lyme for 20+ years, dx'd November 2012, never married, no kids, one loveable 10 year old house cat. Resigned from a 15 year career this past October. The only thing that's missing in my life is that NY cab incident. I've been hit by a car while I was on my bike back in college though.... does that count. ;)

Whoever asked you about detox was right. Detox, detox, detox....! Every day, whether you think you need it or not ! Epsom salt baths, coffee enemas, water enemas, fruit smoothies (the enzymes are miracle workers), and a new thing my doc just told me about today, "activated charcoal pills" (which can be found at any Walgreens or similar shop).

Smoking the green stuff, eh? Oh how I wish I could get my hands on some of that some days. I've never done it but, have often wondered if it would help ease some of the lyme symptoms.

Its good to hear that you're feeling well enough to attend a HS reunion. Tomorrow is my fathers birthday and I'm not feeling well enough to attend the dinner gathering for the first time ever. :(

Re: the garlic.... I use garlic as my go-to antibiotic due to severe, life threatening antibiotic allergies. I take 1-2 raw cloves, dice them up, and swallow them with water as if they were vitamins. Dicing them activates the allicin which is the natural antibiotic, and swallowing them with water allows you to not have to chew them AND the garlic smell won't come through your skin. Just a hint from Heloise kind of thing. :)


CaliforniaCat.... I LOVED your "doc's in denial rant" !!! So funny, and so true that I copied and pasted the paragraph into a word document and saved it on my desktop.

I've never attended a HS reunion. Really don't have any close friends from HS so, I've never bothered to attend. But, good for you for wanting to go, and finding a way to make it happen.

I didn't get email notification of last response so I'm sorry I left you hanging Mystery1 and the rest of you.

I haven't had to deal w divorce (thank dog) but I've had my share of legal issues (landlord, taxes etc) and it sucks almost as much as trying to get the disability (I say that today, other days not sure).

So, researching more about carbs and how to replace foods etc. Tried to keep under 50g yesterday to see if I could pull it off but didn't count them and I know I went over. I think my goal right now is to stop gorging on carbs and aim for 100g until I get used to it?

I'm def willing to try the detox stuff although the thought of a coffee enema makes me wonder if I'm cut out for it!

Hugs

Noooooo, tea w green stuff doesn't work! It has to be cooked at high temp to get the THC out of it. That's why they make edible food stuff w it (cook w butter for LONG time so then use butter to make food). You can also use a vaporizer, it heats the green stuff up enough so that it gives you THC without the smoke. Not cheap though.

Tonight I had salmon and veggies for dinner and am drinking almond milk now w a little splenda :) I'm waiting till I take my night dose of atbx w a toffuti cutie ice cream sandwich. It's just staring at me from the freezer!

I have car this weekend so will go to market. Printed out a list of no carb shopping and am pretty sure I'm going to starve. So excited to get peanut butter again!!! (almond too). I had to stop eating it cause fattening so this will be a fun treat.

The windex in the trashcan was to make sure I didn't try to reach in for any cookies!