HealingWell
Search Close Search
☰

20 year old male recently diagnosed with lyme, overwhelmed

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/28/2017 5:42 AM (GMT 0)
Well, here I am! After 11 months of experiencing symptoms with no explanation and insisting that I had MS, I finally managed to get a Western Blot test that came back positive. However, I am still weary that I don't have lyme disease and what I actually do have is MS. I have had an extensive medical make up this past year and every single thing has come back as negative except for this one positive test for lyme disease. The reason I have suspicions of my diagnosis is because I know people, quite a lot actually, who have/had lyme disease and my symptoms don't really sound anything like theirs. I had also never found a rash on me, but did experience flu like symptoms 2-3 weeks before my other symptoms started appearing.

My symptoms almost from onset are numbness and tingling (I can still feel things, just an odd feeling), muscle twitching, muscle spasms, headache, fatigue, gastrointestinal problems (diarrhea, constipation, loss of appetite), blurry vision, and post urinary dribbling. Are these things that lyme can do?
Posted 4/28/2017 5:52 AM (GMT 0)
yes I have typhus any bacteria can cause these symptoms and many more. Lyme can imitate ms, als, and cognitive issues.

someone will be along to officially welcome you soon! But yes your symptoms can certainly be bacteria caused lyme and coinfections. Sorry you are in this mess.

hope you feel better soon!
Posted 4/28/2017 6:07 AM (GMT 0)
Bhutan boy, what is typhus if you don't mind me asking?
Posted 4/28/2017 6:23 AM (GMT 0)
Hi elymenate - welcome to our community.

You know - when I was trying to find out what was wrong with me - I kept passing by lyme disease because I didn't think my symptoms matched.
No fatigue, no flu-like symptoms, no bulls eye rash.

But, I do have lyme disease. Everyone has a unique set of symptoms.

Yes those certainly can be attributed to lyme disease.
..and you have a positive Lyme Western Blot.

Do you need help finding a LLMD?

Because you are new here, it would be helpful for you to read through the thread at the top of the page titled: "New to Lyme?.Start Here!" It's packed full of useful information.
I hope you find this to be a great group - lots of support and knowledgeable people here.
Posted 4/28/2017 6:53 AM (GMT 0)
typhus is a rickettsial bacteria similar to rocky mountain spotted fever. It killed off many during the world wars. It can be a coinfection of lyme but i don't know if I have lyme. Caught typhus in Bhutan wile living there probably from a flea. The word is from the greek hazy or smoky which describes the state of mind of those infected.

It's been really difficult as so far a year of treatment 1.5 of being sick I am worsening. It's rare to get typhus in usa but rmsf is somewhat common. I wish I never learned this stuff.

all the best
Posted 4/28/2017 12:00 PM (GMT 0)
Hey girlie, I have been seen by a lyme literate doctor, that was who ordered the western blot test. I think she said it was "actively positive". Again I am new to this whole lyme thing and its terrifying me
Posted 4/28/2017 12:43 PM (GMT 0)
All of those symptoms are Lyme symptoms. I don't believe you have MS; you have Lyme. What does your LLMD say about treatment?
Posted 4/28/2017 1:13 PM (GMT 0)
My symptoms wax and wane as well, sometimes they will be present sometimes they wont, my LLMD said that lyme is capable of being asymptomatic as well. She says to take serrapeptase a half an hour before my meal, eat, take 3 tetracyclines, then wait two hours and take my probiotic, I also have to take vitamin B and D but am unsure of when to take thosse
Posted 4/28/2017 1:37 PM (GMT 0)
Bhutan boy, I hope you get better soon! I am one week into my treatment and am not responding well to minocycline so I am starting tetracycline today, keep me posted on anything! Does anyone have any email or instant messaging? I am bed ridden right now and need to clear my head I feel so depressed I will talk to anyone about anything just let me know hahaha
Posted 4/28/2017 1:46 PM (GMT 0)
Hi Elymenate!
Welcome to our community! I'm glad you found us.

Your Lyme doc is correct - the symptoms can wax and wane, and Lyme can be completely asymptomatic as well, or can be brought into complete remission. And as Girlie said, symptoms for each of us can be very different, and they can change around.

You can find those that have enabled your email addresses by those that have the little blue envelope that is lit up in blue, as mine is. You can enable your email address here on the forum so that other members can email you through your profile (next to the log off/on button), go to edit my profile, then enter your email address, click that you want it to show up, then scroll down to the bottom of the page and be sure to click on the submit button to save your information.
Posted 4/28/2017 1:50 PM (GMT 0)

elymenate said...
Well, here I am! After 11 months of experiencing symptoms with no explanation and insisting that I had MS, I finally managed to get a Western Blot test that came back positive. However, I am still weary that I don't have lyme disease and what I actually do have is MS. I have had an extensive medical make up this past year and every single thing has come back as negative except for this one positive test for lyme disease. The reason I have suspicions of my diagnosis is because I know people, quite a lot actually, who have/had lyme disease and my symptoms don't really sound anything like theirs. I had also never found a rash on me, but did experience flu like symptoms 2-3 weeks before my other symptoms started appearing.

My symptoms almost from onset are numbness and tingling (I can still feel things, just an odd feeling), muscle twitching, muscle spasms, headache, fatigue, gastrointestinal problems (diarrhea, constipation, loss of appetite), blurry vision, and post urinary dribbling. Are these things that lyme can do?

Hi and welcome. Yes, Lyme causes ALL the symptoms. Kind of everything you can think of. There are also co-infections - I started with Lyme and a year later have been also diagnosed with SIBO, Hashimoto's, Candida, Epstein Barr, HHV6, Cadmium toxicity, Babesia, and Bartonella. Lyme is a big fat mess and I'm so sorry you're going through this, but you're in good company. This is a great board. I also did not have a rash. The only concerning symptoms I had were fatigue, dizziness, and GI issues.
Posted 4/28/2017 2:03 PM (GMT 0)
These sound EXACTLY like Lyme symptoms to me! Especially since they come and go randomly. And the depression and fear certainly dominated my early days too. If you have a positive test (which can be hard to achieve!) be VERY HAPPY you are seeking the right treatment!

I just can't believe that so few people are aware of the wide-ranging symptoms of Lyme. I wasn't. I didn't know Lyme could do ALL THIS! Which is why we are here to support each other.

You will experience many new and confusing symptoms over the next few weeks/months, and I encourage you to stay calm, come to the forums, read about others' experiences, and eventually you may get really good at rolling your eyes at your own Lyme and moving forward with treatment. By which I mean, instead of panicking and succumbing to the fear of impending doom, you learn to chuckle and say, "Gosh this lyme is weird!"

I highly recommend you keep track of all your symptoms- everything you feel and how you feel every day. This calendar can really come in handy when identifying cycles and flare-ups, reactions to medication, and possibly provide clues to coinfections.

I know if I didn't see on paper how awful I felt a month (or 2 or 10) ago, I'd have a hard time believing I'll ever get better. The progress can be very very slow, so you don't notice day-to-day. But you see the symptoms getting shorter and less severe with time.

Best twitches wishes!
Posted 4/28/2017 2:08 PM (GMT 0)
KristenBee, I have been dealing with an onset of these symptoms for just about a year now, finally had seen an LLMD about a month ago and saw her last week and got diagnosed based off of the Western Blot, which came back positive. my symptoms were never really physical, I had no joint pains (except for a slight one in my left shoulder), it was mostly all neurologic and gastrointestinal from the onset. I have been on minocycline for 1 week and am already discontinuing it as it is making me feel 10x worse my dr prescribed me tetracycline which I am expected to take in an hour, I'm so confused with this whole process
Posted 4/28/2017 2:14 PM (GMT 0)
BabsBunny, thank you so much, I will be posting a thread later discussing my symptoms and pretty much my entire medical history this past year, this hellish roller coaster has not yet ended for me
Posted 4/28/2017 2:17 PM (GMT 0)
You might consider a detox program. No matter what the disease it is important to get the toxins out of your system. Detox is very important in treating all disease. When I did my detox I was taking many vitamins, minerals and supplements which allows the body to get rid of the toxins. My symptoms were double vision, dizziness, bronchitis, sinus trouble, soreness in my elbows, tingling feeling like pins and needles running up my arms, dead feeling in my toes and finger, nausea, tired feeling I had never felt before, muscle spasm in my back, and I didn't want to eat. After two weeks on a detox program I felt like a new person. The symptoms are gone. I followed a program by Dr. Tom McGuire but there are many programs out there. Here is an article which talks about the role of Detox in healing.

http://www.lyme-disease-research-database.com/lee_cowden_interview.html
Posted 4/28/2017 2:18 PM (GMT 0)
Would I take the vitamins, minerals, and supplements in addition to my antibiotics?
Posted 4/28/2017 2:21 PM (GMT 0)

elymenate said...
KristenBee, I have been dealing with an onset of these symptoms for just about a year now, finally had seen an LLMD about a month ago and saw her last week and got diagnosed based off of the Western Blot, which came back positive. my symptoms were never really physical, I had no joint pains (except for a slight one in my left shoulder), it was mostly all neurologic and gastrointestinal from the onset. I have been on minocycline for 1 week and am already discontinuing it as it is making me feel 10x worse my dr prescribed me tetracycline which I am expected to take in an hour, I'm so confused with this whole process

Please do NOT stop taking the abx! What you are experiencing is called a herx. A Jarrisch-Herxhiemer reaction. It's a worsening of symptoms or new symptoms occurring. This is a quite common response to treatment, although not all people will herx.

It happens because as the bacteria die, they put off toxins. Those of us that don't have very well operating detox pathways in our body will then suffer with a herx, due to the toxins that are created during die off of the bacteria.

What you need to do is to start detoxing. You can find some good suggestions for detoxing in our "New to Lyme?" thread as well as here: ​​http://www.tiredoflyme.com/detox-methods.html

Ask all the questions you need to about detoxing!!! So many of us here have to help our bodies detox, and what works for us differs, so you will get all kinds of help and suggestions!!
Posted 4/28/2017 2:28 PM (GMT 0)
Did the doctor tell you if you are taking antibiotic you should take a probiotic to replace the good bacteria in your gut which you are killing? You should be taking vitamins and minerals period. That is the way the body repairs itself. Sick people need even more vitamins and minerals because they are sick. The only way you will find this out is with a holistic healer. The conventional doctor doesn't understand this. Search the internet and get the information.

https://www.thecandidadiet.com/probiotics-while-on-antibiotics/
Posted 4/28/2017 2:32 PM (GMT 0)
My lyme dr has me taking a vitamin b12 capsule, vitamin d capsule, and a probiotic in addition to antibiotics
Posted 4/28/2017 2:39 PM (GMT 0)
Sifting thru all these pages and info can be very overwhelming- I'll start with the easiest detox methods, no extra pills required. I personally don't recommend adding vitamins or supplements unless your doctor can approve it. But please ask your doc about it, supplements can be helpful. But also can interfere with other things.

Probiotics IS a supplement (unless you can eat them, like sauerkraut, kefir, etc, but that's not enough to repopulate your gut) I take a pill with 60 billion live cultures twice a day. I will do 3 times when we add abx. These are a must when your on abx. Ask your doc for a recommendation.

Epsom salt bath. I put 2 cups or more in a bathtub and just lay there for 20-30 minutes. Some people only do feet or short baths, but I am fine with the whole long relaxing thing!

I bought a big natural bristly body brush years ago and it turns out it's perfect for detox. Look up "dry brushing" if you can find a brush to use before your baths or even any shower.

Drink lots of water and add fresh squeezed lemon if you wish.

Adopt a healthy diet of many fresh vegetables. Specifics vary from person to person, but the biggest rule is to cut out alcohol, gluten, dairy, and all types of sugar (even limit fruit bc it feeds yeast infections).
Posted 4/28/2017 3:09 PM (GMT 0)
what would you recommend I eat in the morning for breakfast, I was told I can have yogurt in addition to my probiotics, but only 2 hours after I take my antibiotics
Posted 4/28/2017 3:57 PM (GMT 0)

elymenate said...
KristenBee, I have been dealing with an onset of these symptoms for just about a year now, finally had seen an LLMD about a month ago and saw her last week and got diagnosed based off of the Western Blot, which came back positive. my symptoms were never really physical, I had no joint pains (except for a slight one in my left shoulder), it was mostly all neurologic and gastrointestinal from the onset. I have been on minocycline for 1 week and am already discontinuing it as it is making me feel 10x worse my dr prescribed me tetracycline which I am expected to take in an hour, I'm so confused with this whole process

It's VERY confusing. I'm still confused half the time. Weird things swell up and you're like: OMG!! I'M DYING. But everyone here is right. Just try to stay calm - harder than it sounds. I have trouble myself. If it's terrible and scary, it's probably Lyme, but over time you'll get an idea what's what. If you can afford it, start getting tested for co-infections - EBV, HHV6, get your thyroid checked, heavy metals, mold. No one told me that in the beginning and it's been a slow process. It's safe to assume you have co-infections - pretty much everyone does. You're lucky you found us. We're all here to help and I would be LOST without this board. Cut out wheat and sugar now. Get a jump start on the dietary issues. You're gonna be OK, but it's gonna be hard. We're here for you.
Posted 4/28/2017 4:04 PM (GMT 0)
Thank you so much, how long were you experiencing symptoms before your diagnosis?
Posted 4/28/2017 4:13 PM (GMT 0)

elymenate said...
Well, here I am! After 11 months of experiencing symptoms with no explanation and insisting that I had MS, I finally managed to get a Western Blot test that came back positive. However, I am still weary that I don't have lyme disease and what I actually do have is MS. I have had an extensive medical make up this past year and every single thing has come back as negative except for this one positive test for lyme disease. The reason I have suspicions of my diagnosis is because I know people, quite a lot actually, who have/had lyme disease and my symptoms don't really sound anything like theirs. I had also never found a rash on me, but did experience flu like symptoms 2-3 weeks before my other symptoms started appearing.

My symptoms almost from onset are numbness and tingling (I can still feel things, just an odd feeling), muscle twitching, muscle spasms, headache, fatigue, gastrointestinal problems (diarrhea, constipation, loss of appetite), blurry vision, and post urinary dribbling. Are these things that lyme can do?

With all due respect to MS, it's more of syndrome than a disease. We still don't know exactly what causes nerves to become demyelinated, and there's dozens of different theories out there being tested (infection being one of them).

MS likely doesn't have one singular cause.
MS is simply the description of the proximate cause of dysfunction, not the root cause.

Saying "I am still weary that I don't have lyme disease and what I actually do have is MS" is akin to having a broken arm and saying "I am not sure I have a broken humerus, it may just be arm pain", especially if you have tests that prove otherwise.

One does not rule out the other, and it's entirely possible to have both.

Also, Welcome!
Posted 4/28/2017 6:23 PM (GMT 0)
Mustard Seed, from what you can gather from my symptoms, do you believe I could have both lyme and MS?
✚ New Topic ✚ Reply
12