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Posted 11/23/2015 5:27 PM (GMT -5)
I am a mushroom hunter and spend a lot of time in the woods. Because I spend so much of my time in the woods I expected I would get Lyme disease at some point in my life. I wasn't shocked when I came down with horrible flu symptoms, pin prick sensations all over my body, stabbing pains in my back and memory problems. I tested positive, took antibiotics for 30 days and started to feel better a couple weeks later. That happened in July. I thought that I was fine, back to myself again but that's not the case. I have the worst short term memory and I used to pride myself on remembering everything. I feel like it's getting worse, I can't remember conversations that happened the previous day. I tell people things multiple times because i can't remember. I feel embarrassed when people point it out or are shocked that I can't remember.

What I'm wondering is, does it make sense that I'm having this problem even though my doctor said the Lyme is going away? Could it be something unrelated to Lyme? And is there anything I can do to help my memory? Medications or herbs? Thanks in advance for your thoughts.
Posted 11/23/2015 6:44 PM (GMT -5)
Hi Karstar,
Welcome to our community!

Memory issues is one of the many symptoms for Lyme. I had it severely.

It's very rare for 30 days of abx to be enough to clear Lyme, especially if you have other infections that the tick passed on at the same time. It's recommended to treat a minimum of 6-8 weeks or until 2 months after the resolution of symptoms.

You may need to see a specialist (LLMD = Lyme Literate Medical Doctor) or you can choose to treat yourself herbally. The herbal protocol most often followed on this site is Buhners: buhnerhealinglyme.com/the-protocols/

If you need help in finding an ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will see how close I can get to your location.​

You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can email the Tick-Borne Disease Alliance at
​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php
Posted 11/23/2015 7:06 PM (GMT -5)
I don't know why I'm sharing this, as it's not something I mention so often, and it's been quite awhile now, but the topic of memory issues reminded me of a personal example. Fits perfectly, kind of.

A brief backstory, I used to be anorexic, when I was like 14, right? Well, when I was in recovery, I still obsessed about it, the food. I could remember every bite I'd taken for days past, and be able to add up all the nutrition information in my head, everything.

Honestly, to think about it now, it's amazing, how some people's brains can work like that. So much information. I was just thinking about that earlier, when I was at the store, surrounded by all the people going about their little lives, "I wonder what it feels like to be them, so aware, with the world open to their minds." "Do they think I'm one of them?" "What do they see, when they look into my eyes?" Life outside my bedroom is so strange to me. Well, stranger anyway. Stuff can be pretty weird here too, most of the time.

Anyway, I tend to make these things into a bit more than I originally intended, so I'll just stop here. Really, I should just delete everything but the last paragraph down there, but oh well. Sorry. My bad. Don't mind me. I'm cool with talking to myself.

But, yeah, I know how you feel. I used to be that person too.

No, it's more likely Lyme. Your story's nothing new. Take Traveler's advice, find a legitimate doctor through the networks provided, get the help you need. Don't listen to those other doctors. They may be good for the garden variety stuff, but not this.

Best wishes.
Posted 11/23/2015 7:27 PM (GMT -5)
Antonio - I still think thoughts like that sometimes. You're definitely not alone!!
Posted 11/23/2015 10:50 PM (GMT -5)
Thank you both so much for your advice and information. I didn't expect to receive so much information and help, but also acknowledgement of my issue and that it's real. It gets harder every time I tell someone that I'm sorry, I can't remember and I sigh and feel sad and then get the same reaction which is just a smile or nod. It makes the people in my life uncomfortable, and it's just really hard to deal with each and every time.

I'm also a bit overwhelmed. I have been assuming that I am better, that the lyme is gradually going away like the doctor said. At the same time, I feel not myself and I realize the connection to the Lyme. I'd like to try the herbal remedies but am wondering if I should be doing that in conjunction with the ILADS doctor. Do the ILADS docs treat Lyme with herbal remedies as well or do they usually use antibiotics? If I am mainly having symptoms with my memory, is it still important that I take all the herbs listed?

Again, I thank you so much for the help and support.
Posted 11/24/2015 2:02 AM (GMT -5)
Hi Karstar, welcome to the forum!

Ginkgo Biloba helps alot with memory. It also helps with circulation which is a bonus also for those with lyme because lyme causes our blood to be thicker. One more bonus, it helps with tinnitus(ringing in the ears). All in all, its a win-win-win for me!

I actually just went and got my bottle from my room...I have the "Nature's Bounty" brand and I had researched the best reviewed brand when purchasing--although Im sure there are other good ones as well but I can personally recommend this brand from experience. I have noticed an improvement in my memory :-)


-Courtney
Posted 11/24/2015 8:27 AM (GMT -5)
Welcome Karstar!

Sorry for the reason you're here but glad you found us.

You've been given great information already (including the recommendation for "Nature's Bounty" brand of Ginkgo Biloba - I've had the same good experience with that brand as orchid_rain did)

Truly, if you tested positive for Lyme and then started treatment, 30 days surely isn't enough. Reason being: no one tests positive for Lyme immediately after a tick bite since the available tests measure antibody response.

Well, it takes easily 4-8 wks. for the body to mount an antibody response after a tick bite.

Therefore, it's quite likely you had Lyme longer....and 30 days isn't enough treatment for anyone in that situation.

ILADS recommends treating for 2 months past complete resolution of symptoms.

I saw an ILADS-trained MD and he wasn't versed in herbs at all. And, I mentioned my association with him in past tense because he basically released me a few months back because he felt there was nothing more he could do for me since he only prescribed antibiotics....and he admitted I knew more about herbs than he did. He left the door open should I want to go back on antibiotics but we both agreed my symptoms didn't warrant it (I have super-mild peripheral nervous system issues).

If you are still having issues of any type, a full-spectrum approach is really best. More likely than not, you will herx with new symptoms or the return of old ones because bacteria is surely hidden in other parts of your body besides your brain.

As mentioned, I was only having issues with my peripheral nervous system but, following the full Buhner protocols for Lyme, Bartonella and Babesia brought on all kinds of herx symptoms - some of which were specific to Bartonella and Babesia even though I was only diagnosed with Lyme. Thankfully, I've improved on Buhner's protocols and I'd say I'm at 98%.

Please know it's not uncommon for tick bites to be the "gift that keeps on giving" - as in: we usually get more than Lyme with the tick bite. And, it's entirely possible for people to have asymptomatic infections that, left untreated, will impede healing from Lyme.

If you think you'd like to go the herbal route, you might want to start a new thread to get input.

We are here to support you no matter what you decide. Best of luck to you moving forward!
Posted 11/24/2015 8:53 AM (GMT -5)
I would try to get in with a Lyme literate doctor, as has been suggested, have them check you over for it as well as coinfectioms, and get on some antibiotics, with some herbs being used on the side as a bit of support. Herbal-only would be alright, I guess, but, if the infections are young, your body's still fresh to the attack they're mounting, and you take all the necessary precautions, I'd go with some pharmaceuticals. It's your body, your health though.

Also, tying into what I said about taking the right precaurtions, as cd said, it often tries to drag a lot of crap along with it, not only in the form of other infections, viruses, parasites, and whatnot, but also conditions brought on by the damage those things can cause.

It's not uncommon for people to develop issues with their thyroid, adrenals, GI system, lots of stuff.

That said, you want to be sure that you go about this the right way, supporting all of those things that I mentioned and more with the use of supplements, and detox, detox, detox.

Start the detoxing now, as, even if you're not killing the buggies off, they are still creating toxins.

Please, not to offend by saying this, or make it seem like you're not as determined as you should be, 'cause it's your health and I'm sure you're very concerned, but PLEASE.. take this seriously.

Also, I can understand being overwhelmed, I can. The symptoms, the fears. Then, you get on sites like this, pour your heart out, and are meant with comments like these. They're helpful, yes, sent with the best of intent, but it can be a lot to try to take in at once, I know.

But, for your sake, do it. You're overwhelmed now, but think where you could be a few months from now, if you don't nip this in its big, fat, ugly caboose. NOM, NOM, NOM, you tryna bite on me, Mr. Ticky? Well, Imma bite on you, mister! (In all seriousness, I do not advise actually eating any ticks, just in case. They do not make good snacks, unless you're a bird. In which case, tweet tweet.)

But, yes, stick around the forum, as you go about your healing process. Lots of good information from nice people with shared experiences. Listen to us, your heart, and not those poopy doctors, or the doubts they've implanted into your mind.

Ask any and all questions you need. Someone will help you out eventually.

Post Edited (NotQuiteAntonio) : 11/24/2015 7:07:37 AM (GMT-7)

Posted 11/24/2015 9:03 AM (GMT -5)
I think the same thing when I'm out in public. I look fine on the outside, but nobody can see the numbness or buzzing I feel.

I walk into a room about 5 times a day and forget what I went in for. I mix up my kids lunch boxes. The other day I put a PB sandwich in my peanut allergy child's lunchbox. I hide my son's electronic devices and then forget where I put them. I sent my niece 2 birthday cards. I feel like there's some kind of block that prevents me from remembering things. It sucks and I can't remember what it was like to be clear headed.
Posted 11/24/2015 9:45 AM (GMT -5)
For many tasks, I have found writing everything down on my calendar the best option for me. Things like sending cards, giving the dogs medications, even my symptoms (I'm still treating for adrenal and thyroid issues). Sorry, Kyo - there's no hiding a son's electronic devices in a calendar though!! smilewinkgrin

There are ILADS trained Naturopaths that use only herbs, and there are a few herbal protocols that you can do on your own if you wish. I always encourage people to see a Lyme Literate doctor though - navigating your own healing can be incredibly frustrating and difficult as you fight with your symptoms as well - but many of us have healed on our own using those at home herbal protocols.

Remember that detoxing is a huge issue. As the Lyme bacteria dies off, it releases toxins that can overwhelm the body and increase our symptom severity, or even bring on new symptoms. If you aren't sure about your detoxing routine - that's another thing we love to talk about! LOL!! Just ask!
Posted 12/3/2015 9:34 PM (GMT -5)
I am very thankful and grateful for all the information, it has really helped me feel like I'm not alone. I have support but that support also makes me feel crazy sometimes LOL =(. Thank you guys!

I went to the store last night and bought the Ginkgo Biloba. I also bought some detox tea, not sure if it will help, but can't hurt. I'd like to buy some other vitamins but I'm not exactly sure what to get, what brand, and what's the best deal. I started eating a vegan diet (most of the time) about a month ago. I did it for reasons not related to the Lyme. I know that I need Iron, so some red meat, or meat in general would be good. I also read that I should stay away from sugar and gluten. What are your guys' experiences with food/diet?

NotQuiteAntonio and Traveler- I'm wondering about the detox advice. Can you recommend a detox? I'm not sure if you mean one of the kits you can buy at Whole Foods or just eating clean.

Kyo- I can relate to what you wrote, and get the frustration.

Traveler- I will try the calendar idea, it seems like a good one!

In the past week, I've started feeling symptoms that I felt when I first got sick. It started with my memory getting worse, then feelings of depression, and overall craziness. Now I have headaches, shoulder/arm pain, pin pricks and sleep issues. I'm hoping to purchase the vitamins/herbs tonight or tomorrow.
Posted 12/3/2015 10:45 PM (GMT -5)
Besides the detox methods listed in the "New to Lyme?" thread, here is another great list of detoxing routines:
www.tiredoflyme.com/detox-methods.html
Those detoxing kits are designed for people who are basically healthy, and so may be harsh on your body, to be honest.

Detox tea is a good idea as well, but be sure to not start everything all in one day. You need to space things out so you don't mobilize too many toxins for your body to process out quickly.

Lyme is known to cause symptoms to cycle. Some experience periods of few, light of even no symptoms, then symptoms return. That how I've lived most of my life, because of these infections.

As for any supplements, are you wanting some for treating these infections, or for support for your body? If it's for support, you really should know what needs supplementing, before just adding things in.

There are a few basics that can generally be started, like a good multi vitamin & multi mineral supplement, vitamin C, magnesium, though.

Sorry, it's late for me and that's all I can think of. LOL!
Posted 12/4/2015 9:28 AM (GMT -5)
Hi Karstar. I'm glad you found your way here.

I have no idea how long I've had Lyme since it wasn't presenting noticeable symptoms until I went through a lot of stress. The last several months I've been having memory problems and I'm pretty sure mine is related to my low thyroid. My doc thinks it is since it came on about the same time and we haven't been able to get my thyroid working right, so we'll see what happens. I do have a ginkgo tree, so I guess I should start nibbling on some leaves. ;)

I wish you the best on your journey to health!
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