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What do you do on your worst days?

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Posted 7/1/2016 7:04 PM (GMT 0)
I have been struggling mightily the past few days. My detoxing is up (but not too much). Physically I feel horrible. My arms and legs feel tired even when I am laying down. Plus all my other symptoms.

Beyond that, emotionally I am spent. Just curious what people do when they feel like they aren't going to make it?

Logan
Posted 7/1/2016 7:20 PM (GMT 0)
You probably don't want to hear from me...

I cry - then I take an epsom salt bath...and cry sitting in the tub.
Sometimes I lie down ...and cry. Crying is a release for me...

I take my Pinella and Burbur ...sometimes two in a row.

I just keep telling myself over and over that it will get better...
Posted 7/1/2016 7:28 PM (GMT 0)
Girlie- I think I'd cry if I didn't feel flat and anxiety at the same time. Is that even possible? Thank you for sharing
Posted 7/1/2016 7:30 PM (GMT 0)
Hi Bat03!-

I am so sorry to hear that you are struggling so bad right now.

Can you try to decrease the amount of herbs/or/ medication that you are taking? I have had to do this a couple of times, just to have a day that I didn't feel like total death.

Do you get any relief from detoxing? I have personally always struggled with detoxing , I have a gene mutation that makes it harder for me to detox properly.

Have you been tested for any gene mutations?

Sending you many, many ((((Hugs!)))) to get through this difficult time

Best Wishes!
Posted 7/1/2016 7:31 PM (GMT 0)
just keep telling yourself it will pass...it always does.

Are you herxing? If so, you might want to cut back on your 'killing' meds or herbs for a few days...to let your body catch up.
Posted 7/1/2016 7:44 PM (GMT 0)
Hi Logan, I am right there with you, I am in the same spot. Everyday is agonizing for me. I am new to the forum but here is what I have done and still do to survive. It helps me with the pain, depression, head pressure, headaches, hopelessness...

Spiritual connection - prayer, reading and very positive music. The hardest thing for me at times is my own mind going down the wrong paths. I read a lot of books on self observation and cognitive thinking. Helps me to be able to separate a bit from the pain and hopelessness I feel. Also I have a huge help from a friend that is a counselor. We get together a couple times a week to talk, which is a huge help for me.

Visitors - I used to hide and push family and friends away because I felt so crappy. But I found that having people over is a great help. Just chatting about anything is a distraction from the pain.

Cannabis - When I am really bad I use some cannabis. I have used it since January. I ingest and smoke small amounts. It definitely helps with the pain, depression and anxiety. My psychologist told me after I started to absolutely use it for pain. I am able to relax and just ride it out. When I really need to separate from the pain (at the point where Iam over the top with pain, sickness) I smoke a little more, put on headphones for some really uplifting music. As crazy as this sounds I find then I can separate more from the pain and shift my thoughts into a lot better place. I live in CA where I can get a medical license. This is all new for me, I didn't smoke much cannabis when younger so this is all new to me. All my doctors told me to use it. Before anything study it up, lots of information out there about the medical benefits of cannabis.

Hang in there...I am riding this train too
Posted 7/1/2016 8:02 PM (GMT 0)
Scuba boy- thanks. I have such noise intolerance sometimes I can't listen to music which sucks because I love my jams.

My buddy who lives in Bend OR has done tons of research on cannabis and its health benefits and not just pain, which he has helped me with. I'm not s big partaken as well but looking into it more.

I tried going back to therapy but the woman I saw was to much of a rah rah type, and where I live currently has limited resources in that regard. Before the Lyme diagnosis I was diagnosed as bipolar and even committed for two weeks so I'm slowly trying to build up that trust again.

Thanks again
Posted 7/1/2016 10:26 PM (GMT 0)
Bat I have felt bi-polar since I first got lyme. One day euphoric and the next laying around being a slug with no emotions.

On my bad days I go to water. A lake or a stream, river or even a pond - it soothes my soul and I just take it all in and try to let it cleanse me mentally.

But I am one heck of a good crier. I cry in the shower hoping that my sobs don't go about the decibels of the shower water.
Posted 7/1/2016 10:51 PM (GMT 0)
LB and Girlie - it might be a herx. My naturopath suggested cutting back some too. So that is the plan.

I really try to stay on top of my detoxing, BUT I have no idea if it helps or not. I haven't been tested for a gene mutation. How do I go about that? My bank account reads $0.00 so I'm not really sure what my next step is. I'll have to figure that out soon though.

PeteZa - the funny thing is for ears they told me
I was bipolar and I have never had a manic episode. At least I don't think I did. So they told me I was bipolar 2 and that the memory issues and body aches were all the depression and of course I trusted all of them. Would have saved me years of my life and this headache of a disease if I had just been treated appropriately way back when. Or at least that would have been my hope.
Posted 7/1/2016 10:56 PM (GMT 0)
Bat I really struggle with bad days especially when they follow a pretty good day. I, like Girlie, take some extra Pinella and Burbur. And I do a lot of self talk. "This too shall pass", "You are getting better", "Hang in there." I also will turn on Hulu and watch episodes of some of my favorite shows. There are some shows that I know I have seen more than 30x. And sometimes, I just get out of the house to clear my head. It's a struggle sometimes to push myself out the door, but I always feel better afterwards. I know that some people like to be alone when they don't feel way, but having my kids and/or hubby around during those times, also make me feel better.

Lyme Moderator
Posted 7/2/2016 12:38 AM (GMT 0)
Hi Bat, I found a new way to cope today, that is this forum. I dont feel so alone anymore. Wow what a huge relief. Really appreciate see others jumping in to help, wow, awesome, puts a smile on my face. Which is a rare thing to see.

Noise - I am really noise sensitive also. But I am ok with music. At times will use some very relaxing music (mellow) or listen to a stream or ocean on my headphones. Ill focus my thoughts on those sounds and the pain backs off. I cant get out of the house or recliner almost every day, but I love to be outdoors. Since I cant go outside right now I bring the outdoors to me. Any kind of nature movie I find is something.

counselor - yes I know the type. There are excellent counselors out there. Hard to find. I also read a lot of books on anything positive for the mind. I find I need to really feed my mind with good thoughts.

Thanks all for sharing
Posted 7/2/2016 2:39 AM (GMT 0)
Little Bear (LB): So you have some detoxing gene mutations as as well. Guess I'm not the only one here with that. Have you tried D-Limonene for it? (Liver phase II detox support) It makes feel feel a lot better the next day. I take it about 2 nights a week. I dont take it every night cause it does speeds up the liver function and can effect RX meds that are affected/influenced by the liver function.

This posted topic: My worst days I do what men do, have a beer and take a nap. All joking aside, seems like my worse days are over. Glad I can have a beer again, and its nice to be able to sleep again. The day I woke almost blind I thought death was near. Those were bad days.
Posted 7/2/2016 2:44 AM (GMT 0)
Astroman - a beer sounds so good right now... But I guess that will
Have to wait until I'm better. Glad you are feeling better! This disease is so scary.
Posted 7/2/2016 2:45 AM (GMT 0)
Talk to my mother She always calm me down....
Posted 7/2/2016 3:11 AM (GMT 0)
On a serious note to your question, I love music and the availability of it online.

Nature is also a "leveler", and ironically how I got this. I live near a rocky stream with many near by lakes. When I couldnt walk well or bike I just drove to boat landings and walked out on the docks.

Frozen lakes are even relaxing, but in a different way. There is nothing like the frozen winter snow-filled silence in the woods........well, once you get over the cold.. I dress warm, looking cool is for kids LOL!

No beer for one year. Near beer is terrible..........some gluten free (Mission) was actually OK, but still had alcohol that fed bacteria and yeast. And of course no alcohol with Flagle ABX, I tried it, bad idea.....
Posted 7/2/2016 4:52 AM (GMT 0)
Bat i hear you ..it hurts to cry so i treat harder ..maybe not good but i go for extra sweat or extra bee stings ..it probably some sorta masochism because the rage i feel at these bugs for decimating my life right i was rebuiling it with the love of my life ..right as i was getting to know my daughter who i was torn from ..on my worst days i try to be grateful ...this lady emailed me she cant tolerate sunlight in her eyes ..my counseler has tachy of 120 as normal testing hr ...it may hurt and my flesh is failing but i will blankety blank before i let my heart give in...coping i have become a forum addict ..soon to become microscopy addict and rife addict ...bee venom addict and add a few to that ..zannies and food give me less and less confort ..hey be grateful you dont have vertigo or musclewasting cuz those sx really suck

Post Edited (bluelyme) : 7/1/2016 10:55:38 PM (GMT-6)

Posted 7/2/2016 4:23 PM (GMT 0)
Hi Bat03!-

You asked about tests for gene mutations. I only got tested for MTHFR. My LLMD ordered a blood draw for this test. I am homozygous a1298c. Which means that I got a pair from both my parents. Thanks Mom and Dad! :( Just Kidding - I still love my parents! :)

Anyway, I see some people here use : 23andme gene test kit. All I know about this is that you order the kit, I don't know if it is a saliva or blood test. I think that people were paying about $100 ? For the test?

Once you get your results, you post it to Genetic Genie website. I think that you might have to pay for this also?

It might be easier to start a new thread and ask about cost of 23andme test and Genetic Genie.


- Astroman, I am sorry to hear that you also have issues with gene mutations for detoxing. I am taking liposomal glutathione, vitamins, oil, and A-Inflam. I asked my LLMD about a liver detox in the past, and she said that the herbs in the A-Inflam will help with liver detox. I also just started Detox 1. This is another Byron White herbal formula.

Looking back, I wish that I would have done the 23andme test. It looks like it would be a lot more informative, because it tests for other mutations. It looks like it tests for MTHFR and a lot of other mutations. Who knows, maybe I will have this done in the future?

P.S.- I am not sure, but there might be other gene tests besides 23andme?

Best Wishes!
Posted 7/2/2016 4:26 PM (GMT 0)
LB - I have the gluththione and use some oils and I actually have the A-inflam but I am kind of scared to use it. Do you find it helps?
Posted 7/2/2016 4:44 PM (GMT 0)
Bat03 there are several genetic mutation testing companies. NUTRIGENOMIC TESTING is by Dr. Amy Yasko. It test for about 30
methylation SNP’s. You may need a doctor’s prescription. It is considered to be a highly accurate test. You cannot order this test if you are in NY or MD.

http://www.holisticheal.com/health-tests/nutrigenomic-testing


The 23andme is one you can do on your own and seems to be prevalent on this forum. It costs $199. This is a saliva test. It is stated to miss 5 SNP’s that Yasko’s will not miss, but is cheaper and still an excellent test. Another bonus: you get a LOT more genetic and ancestry information.

After the 23andme results come back, you’ll get “raw data” that you won’t be able to read. You will upload that data to any of the following, which in turn will give you what you need:

Genetic Genie, which will look at your methylation genetics just by reading your 23andMe raw data.

Live Wello, which gives a great deal of information to you based on 23and me, plus links to learn more about each gene’s potential problem.

Nutrahacker will tell you what supplements you need to take, and which ones plus more you need to avoid, due to your mutations.

Sterling Hill’s app http://www.mthfrsupport.com/sterlings-app/ or you can contact her and pay for a call to help with interpretation of your genetics.

I hope this helps.
Posted 7/2/2016 5:39 PM (GMT 0)
Hi Bat03!-

I didn't notice any difference on the lipsomal glutathione, vitamins, or oil. But the A-Inflam helped me a lot!

I was also nervous to try A-INFLAM in the beginning, since EVERYTHING else made me worse. I started off slowly with one drop in the morning and one drop in the evening. I would increase by one drop every couple of days.

When I got up to 13 drops in the morning and 13 drops in the evening (total 26 drops a day), I no longer stuttered. (I stuttered everyday since I started treatment for Lyme).

I am now at 20 drops in the morning and 20 in the evening (total 40 drops a day). I still don't stutter! My LLMD said to get up to 40 drops and I did. This is the only thing that I have taken since I started treatment that has helped me. I never herxed from it. Actually it was as if I "craved" the A-Inflam. It was like my body was trying to tell me that it needed this. My LLMD said that I could go as high as 60 drops total. But I think for now I will stick at 40. Because at 60 drops a day, I would need a lot of bottles. :)

I don't sell A-INFLAM or get paid for mentioning it. But this has been the only thing that has helped me. The A-BAB (for Babesia) I have had a hard time with. I am stuck at 6 drops total a day.

I just started the Detox1 (Byron White herbal drops). Hard to tell yet if they are helping.

I have Lyme, Babesia, Bartonella, and over growth of Candida. Both Lyme and Candida can cause inflammation.

I hope that you try the A-INFLAM! I also hope that you have a positive response from it like I did!

Best Wishes!
Posted 7/2/2016 5:44 PM (GMT 0)
LB - I could only pray to have a similar reaction with the A-inflam. I'll definitely take it slow. I think overall body/head inflammation is really what is hurting me. Thank you for the encouragement. Such an expensive bottle sitting on my shelf
Posted 7/2/2016 5:44 PM (GMT 0)
Little Bear (LB) - Oh, I misunderstood your previous comment mentioning detox genetics.

Your MTHFR A1298c effects a lot of things (thankfully I only have one copy on this), but there are more specific genes that hamper detox too- more specifically liver detox. I have 2 copies on some of these.

I would recommend 23andme pared with "LiveWello" or the "Sterling App" (37 pages, about 300-400 genes)

/mthfrsupport.com/sterlings-app/

The Byron White formulas look great. I think they only sell through Drs though........?
Posted 7/2/2016 5:58 PM (GMT 0)
Hi astroman!-

Unfortunately, Yes, you can only get the Byron White herbs through a doctor.

Yeah, I kick myself for not for not getting tested through 23andme, or some other place that tests for more than just the MTHFR. Oh well, maybe in the future! :)


Thank you Krimpet for giving all the correct information about these tests!! Ha ha ha As you can tell, I was playing the "guessing game". :) Thank you for correcting me!


Bat03- I am sending you many many ((((Hugs!)))). I am rooting for you!!!

Post Edited (Little Bear (LB)) : 7/2/2016 12:23:58 PM (GMT-6)

Posted 7/2/2016 6:24 PM (GMT 0)
LB - did you just the drops under the tongue?
Posted 7/2/2016 6:59 PM (GMT 0)
Hi Bat!-

There are "Usage Guidelines" on the bottle. I follow these.

First shake the formula vigorously before each use. Make sure you have a good grip on the bottle! :) You really don't need to shake violently, you just want to make sure that the alcohol, herbs get mixed up.

It says to put formula in a small amount of filtered water. I uses a shot glass and put about 1 ounce of water in it. Pretty much I fill up a shot glass. Leave about a half of an inch to an inch from the top of glass, this should be about 1 ounce. It doesn't need to be exactly 1 ounce. I use and drink reverse osmosis water, but I think that any water is fine.

Once you have water in the shot glass, only put One drop into the glass. Don't put a whole dropper full, but only ONE drop!

I then put the water with A-Inflam into my mouth. Don't swallow!!! I hold it in my mouth for 1 minute and then swallow!!!

You also want to take A-INFLAM separately from other food, beverage, meds, and supplements by at least 20 minutes! You can drink water in this time frame, but nothing else.


I hope that I explained this okay? If you have any questions just ask:)

Best Wishes!
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