Hey Everyone. I’m new to the group, and at the suggestion of my husband, I’m reaching out to others who have been affected by Lyme disease… I have felt crappy for so long (only 2 years… so I know that’s nothing compared to so many… but it still feels so long…) I finally got my diagnosis in January and was surprised by the relief I felt to have an answer and not feel “crazy”. I did the 3 weeks of antibiotics, but my NP that was treating me said she could no longer be in charge of my care because she could lose her license… so I either needed to find a Lyme doctor or was on my own… the only doctor nearby had no openings until the end of April (now) 4 months after my diagnosis, and was so expensive… so I thought I would go at it alone… I changed my diet to very low carb (the Keto diet), I’m taking a ton of supplements, and I was really focusing on getting enough sleep… and it seemed to be helping. I had more energy than I had in a long time… but then I kind of fell off the bandwagon with my diet over the past month and have been off and on with it… and now I’m laying here feeling the same exhaustion creeping in and I’m feeling so hopeless. I know it sounds stupid, because the diet, supplements, and sleep are helping… but those things seem to be really hard for me to stick to and almost make me feel depressed thinking I might have to do it forever… how do change my thought process to be more positive toward the things that will help me heal? I’m just feeling defeated right now…
The main issue with sleep and Lyme Disease is that LD causes your internal circadian rhythms to be reversed. So, if you find yourself really sleepy during the day and then having trouble getting to sleep at night, this may be an issue for you. This is something to talk to your LD about when you get into see him. LD is not something you should try to treat on your own, but developing good habits can help your symptoms, for sure. There is a book entitled “How Can I Get Better?” by Richard Horowitz that, in my opinion, is very good for ideas on this.
I highly recommend getting in with a LLMD. No other doc can treat Lyme in the regular medical field. You can either go to a naturopath or a LLMD naturopath. Mine has kept me on Doxy and Japanese knotweed for three months now until we could get Igenex labs done and are now in the process of ordering my IV. I have neuro Lyme, do you? 3 weeks of doxy is not enough if you are chronic. You need to address viruses (I’ve seen a HUGE improvement since I added in an antiviral about two weeks ago). A lot of my fatigue has been from eating the wrong foods (dairy, gluten). What brand supplements are you on? I took mine in and my doc said they were no good. I now use Pure Encapsulations. Are you taking B12 or Vitamin D3? You should have labs done to see which supplements you really need or can forget. Diet is huge, but just going no carbs is not enough. You should have no sugar, no gluten and no dairy. And, no alcohol. There is a good daiary free Keto page on Facebook. I’m also on low dose naltrexone which has helped so much with the neuropothy. The LLMD will address everything you need to succeed…immune function, candida (which is key if you’re gonna beat Lyme), parasites, supplements, treating with either antibiotics, herbs or a combo of the two, and detoxing…I drink lemon water all day and I use drops of parsley, burbur pinella and mapalo. You have to make sure you’re detoxing not just to feel better but also for liver function. It’s A LOT to get used to. I was one of those people who couldn’t remember to take one pill a day and now I have a great system down. I am really working on my diet now. It’s a process and you need support.
I have been reading that book actually! It’s been really educational. And kind of depressing. I don’t know… I felt crappy for 2 years and I guess i hoped when I got the answer it would be downhill from there, you know? And something that I could manage on my own. My health has always been within my control up to this point, so it’s been really humbling that my efforts (or lack thereof because of feeling either tired or overwhelmed) haven’t been enough. You know?
Rebecca, I’m not sure that I know if I have neuro Lyme or not… I’m so new to all of this… and as my original post said, I’ve been trying to go at it all alone, so I’m also very illiterate when it comes to Lyme and all the different aspects… all I know is I took the 3 weeks of antibiotics and according to the CDC I’m “supposed to be healed”… but here I am, still struggling with the same symptoms… but I had a friend who is studying to become an NP and so he got me some really quality supplements, but I have gone through all of them… so now I’m just on generic brands. I take magnesium, potassium, vit C, A, D, folic acid, clove, oregano oil, cinnamon, turmeric, apple cider vinegar, DHEA, and a probiotic… I believe those are all. But back in february/March, as I ate really low carb (low to no sugars included), a lot of veggies, these supplements, and really tried to get to bed at a decent time, 10 at the latest (it was a huge struggle at first, because my circadian rhythm was totally out of whack! Like you said!) but I caught a glimpse of the energy I once had! I didn’t feel 100% still… I still couldn’t workout and I still found myself running out of energy quickly, BUT I actually WANTED to do things! I felt motivation… I didn’t have to force myself to try to be motivated and push through the exhaustion. It just seemed to come… but about a month ago, life got busy and I fell of the bandwagon of eating healthy and I feel like all my hard work just went down the drain. And now I’m feeling overwhelmed by the prospect that I have to “start over” and I feel overwhelmed that this will be the rest of my life… me doing really well for a few months, then getting busy in life and not sticking to what helps me and then messing up and then being stuck in this darn cycle forever… you know?
I totally understand how you feel. I have been going through this for two
years as well. Do you have symptoms like peripheral neuropothy, nerve pain,
muscle spasms, facial twitching or palsy, etc? That would be neuro Lyme.
The CDC does recognize post-treatment lyme syndrome on their website. So,
they know that we exist, they just don’t seem to care…they offer no help
after 3 weeks of Doxy. BUT, I truly feel you would benefit from a visit
with a naturopath. Are there any integrative doctors in your insurance
network you could at least see? Maybe find one who is “Lyme-friendly” if
you don’t want to spend money on a LLMD? I was skeptical too and it is a
lot of money. But, how GOOD I feel now compared to last summer is TOTALLY
worth the $1500 I spent. You really need to address the underlying causes
to why you feel this way. You can get help and advice from other Lymies,
but in my opinion - you need someone to help guide you through the process
of seeing what works and what doesn’t. Are you on an antiviral? I feel
amazing in the last two weeks since I started it. Your immune system is
compromised so latent viruses can resurface and cause nerve issues or
fatigue - that’s a lot of the reason we feel so crappy too. Best of luck to
you! There are also some really great Lyme groups on Facebook
~ Rebecca Marlis
My name is Ray, I understand where you are at, there is hope!
First perhaps it would help you to better understand the disease that you presently have, there is a website called Envita.com It is a private hospital treating lyme disease and cancer, I am not telling you to go there, rather they have several wonderful videos on lyme disease, and why antobiotics do not work, and what did for me. LDI-low dose immuno therapy. That’s what my Doc uses here in Michigan. If you have a better understanding of how lyme works, that may be your beginning.
Bless you- Ray
Thank you Rebecca! I don’t think I have neuro Lyme…but I’m not positive… at my worst, my extremities tingle and ache really bad and my eye/cheek twitches… but not very bad. More like muscle spasms. But yeah… I think it’s the huge cost that’s holding me back from seeing a LLMD… I just feel guilty. I feel like I have been such a burden with not being to keep up with all that I want to do and feel I should do the past 2 years and add huge amounts of money on top of that?.. I feel bad… but maybe a naturopath would be more affordable? The LLMD is $600 dollars just for the initial visit/consult, and then and additional $300-400 per visit… and that doesn’t include the medications he may prescribe… it just feels like so much… first, feeling sick for so long and then to finally get an answer only to find out my previous doctor visits were like pennies compared to what it’s going to cost with a LLMD… sorry… I’m ranting… thank you so much for letting me put my thoughts into words. I think seeking additional care is the right thing to do… Im just having a hard time getting myself to do it…
Thank you Ray! I will go look at those videos now. I do like the sounds of alternative treatment as opposed to antibiotics. That first round of antibiotics they put me on, put me through the wringer! And I feel like they totally messed up my gut, which seems rather counterproductive since everything I have read about Lyme indicates that a healthy gut biome is one of the most important aspects to healing. But I really appreciate your positivity and encouragement! I don’t know why I have been feeling so discouraged recently. So I appreciate all the kind advice!
Perhaps you are feeling so down because as a rule, Lyme disease primarily attacks three areas of our bodies. These are the Nervous system (it nests in the brain)- this causes many changes to our moods/feelings, including anxiety, depression, hopelessness and so on, also it attacks the GI track (so you are right on that one too) and the Muscular/skeletal system. You may want to search something called the Jarisch-Herxheimer reaction, this perhaps could explain why you felt so bad during the antibiotics you took. They do kill some Lyme when the bacteria are in certain phases of their life cycle.
Here is Rule #1- EVERYONE FIGHTS NO ONE QUITS! Okay?
Be Good- Ray
Thanks Ray! I’ll keep fighting. Talking with others going through the same thing has been really good for me! So thank you!
I have totally been there! My PCP prescribed Doxy long before I ever
finally took it. I wasn’t convinced it was Lyme either or I was too scared
of the herx (which in reality, wasn’t all that bad - we are already used to
feel like crap all the time). And, I let that mom guilt go recently…it’s
not my fault and I’m doing the BEST that I can. That’s what a family is
for. Wouldn’t you understand if it were someone else and NOT you? Yes, the
money is a burden, but you won’t know unless you try. And, you have to do
something or this will just continue and get worse. I tried it on my own
for awhile too - no such luck
Really, you just have to jump in! I was so suprised that once I was on
Doxy, as long as I detoxed, I was actually feeling better! And, have you
been tested for viruses? I just started taking an antiviral (I had to ask
my doc for it!) and I haven’t felt this good in years!!! I have energy, I’m
sleeping better, the muscle spasms have been gone for 1 1/2 weeks, and I
have more focus!!
You have to have hope. Hopefully my story gives you a little boost!
And, like I said - maybe find a functinal / intergrative doc in network
that can guide you a bit if you’re still nervous. I went to so many doctors
up to this point, and maybe you have too. It really takes awhile to find
someone who you relate to. Sorry, if I repeated myself in this message to
the last one.
Feel free to message me if you ever need to chat I think you can message
~ Rebecca Marlis
Rebecca, I had LD for 16 years before I was clinically diagnosed. I was diagnosed with a lot of other things which I likely do not even have, though, and I also had significant bizarre symptoms which none of my doctors were able to diagnose. The neurologist I went to did a ton of blood tests, MRI’s, and other tests, then told me I needed to see a psychiatrist because I “was depressed.” I wanted to punch him in the face and scream, “Of course I’m depressed, you moron! I’ve been ill for 14 years and none of you can tell me what’s wrong!”
I finally lucked out (or the Lord took pity on me, more likely) when a lady moved home to my town from Virginia. Her entire family, other than her husband, had contracted LD and she had almost died from it. She recognized all the symptoms I had and insisted that I see a LLD before I was too old to withstand the required treatments. I did and felt better within six months. He does treat me with a variety of antibiotics, as well as vitamins, minerals, and other natural products. Also, I had to be on VS1 and gluten free for 30 days before he would even begin antibiotic treatments. VS1 is an extremely potent probiotic which you can only buy from your pharmacy. They keep it in their fridge. I take two of those a day, along with Saccharomyces, another probiotic. He also diagnosed me with two common co-infections of LD and is treating me for those, as well.
I know two years is a long time, but I wanted to post this to let you see that that is actually on the low end of time before diagnosis with chronic LD and with diagnosis and treatment comes the relief from suffering.