Does anyone else have these symptoms

why are you so resistant to the idea you have lyme?

its kind of confusing

Because of the way I "got" it and that my symptoms don't match a lot of people

The say its not sexually transmitted and even if it was I didn't have any exchange of bodily fluids so I'm just lost.

I feel like I haven't found anyone with my same urinary issues

This isn't a one size fits all problem. I sit in an infusion room every week with a revolving door of 2-6 other Lyme patients. We all have different infection stories and vastly different symptoms and responses to treatment. You can't base your diagnosis on other people's symptoms. You're lucky, you have a positive test that tells you what you have. Many here fought for years just to get a clinical diagnosis. As for not finding anyone else with urinary issues, cast a wider net if it's important to you to find others. I'm on several forums and Facebook groups. Yesterday somebody was asking what to do for testicle pain on a FB forum. Others have pictures of the strangest rashes you've ever seen. Some people only have a frozen shoulder. Lyme and co's are stealthy and pick on whatever part of your body they feel like.

Hi looking4acure -

Well, the bad news is that reaching a Lyme diagnosis means going down a wiley rabbit hole and requires a lot of self-education.

The good news is you're in the right place.

As others have suggested, there are multiple ways to contract Lyme - and most of the education out there is wrong. In fact, there are so many ways to contract it - I'm a firm believer that most people have it. And YES, it CAN be transmitted via sexual activity. And most people who got it from a tick didn't see a tick or a bite or a rash. And there are entire families with Lyme and they don't live in or have visited endemic areas. The possibilities are numerous.

So, while the "system" uses all kinds of reasons to artificially suppress Lyme diagnoses, and the absence of a bite or bullseye rash are just a few of them, the very unreliable tests VERY RARELY produce false positives. So, embrace the results of your WB.

Even the CDC states on its website that Lyme is a clinical diagnosis so that's the next step - to get to a Lyme specialist who can help you determine if you need to start treating for Lyme. Many people are asymptomatic.

Other reasons for your symptoms may include the coinfections that are common with Lyme that MDs almost never test for (and the tests for them are also unreliable). Many of the coinfections symptoms overlap with Lyme and each other and it gets pretty confusing.

All of your sx (except the UTI and spine pain) are common with Lyme and coinfections, so that's all a good match. The spine pain is probably due to the UTI and while it is generally not associated w/ Lyme & co, ANYTHING can happen with Lyme. Lyme can target any area of the body and start causing trouble.

It's also possible you have two things going on - the UTI and the Lyme/coinfections.

Are you on abx for the UTI? If you can try to take doxy at 200mg/day. This is what is also prescribed for the Lyme so you might hit both birds that way. But start with a lower dose, slowly work up to optimal dose. And detox like CRAZY. Tons of info on this forum and online about detoxing.

I'd also start with this questionnaire to understand if you might have other sx - this can help you determine what might be dominant and will also be very helpful for your Lyme specialist:
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

Please review the "New to Lyme?" thread info at the top of the page - it has invaluable information about diagnosis, symptoms, treatment, etc. and will help you prepare for your first appointment.
www.healingwell.com/community/default.aspx?f=30&m=1606610

Please email Girlie, our head mod, and she can help you with contact info for LLMDs in your area to consider. You can find her email address in her profile. Or click here:
www.healingwell.com/community/profile.aspx?f=30&p=197951

I'm also a mod but not around as consistently but will help however I can.
​
​​Y​​ou 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​

Y​ou can email ​the​ Tick-Borne Disease Alliance at​: [email protected]​

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

And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme--they adhere dogmatically to the IDSA and very narrow definition of Lyme and limited treatment. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php

Lyme coaching
www.lymecoaching.com/#!schedule-a-call/c1gzt


Hope this is helpful - if not, just keep asking questions!

-p

Lapis you don't seem to understand that there was no UTI. ever. no std. ever. no bug ever found. I got sick and these symptoms within a few days of being in the massage place so is it not lyme?

I was tested by a urologist within a few days of the UTI symptoms and NEVER once did UTI or anything of that nature show up....

They tested urine, blood, semen all cultured and nothing.... Wouldn't Borrelia have grown in one of those if that was causing my symptoms?

You mention that the spine pain and urinary issues are not common with lyme well those are my daily symptoms all day every day so I'm not sure whats happening.

I feel like I had lyme all along and this pain I'm experiencing is completely unrelated.

Ive been prescribed antibiotics along the way for suspected STDS (early on) and never got any relief except for a rocephin shot early on... made my symptoms go away for a day. Then they tried again a few months later and didn't get any relief so not sure what that was all about.


IM LOST.

Pirouette thank you so much I'm just trying to get my life back or at least make sure I'm treating whats giving me these horrible symptoms.

I will check the listt and reach out to those people. Ive seen a mess of doctors with no answers just "its all in your head" or "you sound crazy" so this has been a miracle for me.

looking4acure said...


You mention that the spine pain and urinary issues are not common with lyme well those are my daily symptoms all day every day so I'm not sure whats happening.


.

spine pain is very common with lyme. so is kidney issues. everything you are experiencing is very common with other lyme patients.

You absolutely can have the symptoms of a UTI but not actually have the diagnosed UTI by testing.

One of my early symptoms was feeling like I had a severe UTI. The sides of my hips hurt and my buttocks and insides felt horrible.

Lyme is can imitate many illnesses.

My dominate infection turned out to be Bartonella, which also could be causing your twitching.

I understand we want to know the origin of these infections, but No matter how the transmission occurred its important to start treatment.

Treatment will help, don't delay.

Yes I have and or experiencing all 3.

You have positive Lyme result it's not weird, it's conclusive. And negative everything else you tested for.

Lyme is treatable.

It almost doesn't matter what it is in the sense that you have some pathogenic microbe and herbs can help deal with it.

So whether it's lyme or some thing else you should treat.

Herbs are antibacterial, antiviral, immune boosting, and detoxing.

All things you need to address now.

Purrrsiankitty said...
Intercistal cystitis, commonly feels like a UTI without the infection. I even had urinary blood but no infection.

IC was confirmed by urologist, unfortunately urologist doesn't get the connection between lyme/Bart/ic.

But I knew what I was feeling, and even though I had to draw my own end concusion, I did have IC, which Is connected to Lyme.

I've been following your posts for days. I understand your earlier confusion. What I don't understand is you're laying out the same facts for your situation over and over. You get the same answers from this knowledgeable group who have been through everything and you still don't want to believe or accept. I'm too sick to post anymore. please get in treatment. you have lyme. doesn't matter where you got it. You need treatment. You are blessed to have your answer. You CANNOT deny lyme away.

Prayers that you will understand and come out of denial.

Right.

Then the quicker he can start treatment so he can possibly avoid 3-4 symptoms becoming 15-20-30 symptoms. Which can happen and has happened to many people with lyme.

looking4acure


You don't know when you actually got lyme. You could have been bitten by a tick. I did not see a tick bite...or an EM - just symptoms happened.

The ticks can be a tiny speck...behind your knee...back of your head...you could easily miss it...many do.

Just because it happened after visiting that place - doesn't mean you got it there. Coincidences happen all the time.
That is not proof you got it there.

It does NOT matter if the other guy tests positive ...not relevant.

YOU have symptoms, YOU tested positive. CASE CLOSED.

"Sorry if I’ve repeated some things or questions I just really want to know if you guys think it’s Lyme causing my symptoms?"

We have said 'yes' many times.

Go see a LLMD.

I understand that you can be bitten and never know. But It’s not a coincidence for me or the other guy that got sick in the same place and swear by the same story. We have the same symptoms to the T. Urinary pain and spine pain.

I started experiencing urinary discomfort and symptoms within 24 hours of leaving . I tried to brush if off as nothing. Within two days I was bed ridden and so sick in excruciating urinary pain. All down hill from there.

First time we went back they told me baby oil gave me a sample to get me off their case. Second time I went back I told them it wasn’t baby oil they panicked in Chinese and hid some bottles and locked the door. Owner told me good luck getting a search warrant.

It just doesn’t make sense.

I’m about to spend my life savings on an LLMD and a private investigator to go in there and get samples of the substances so I can hopefully get them tested.

I could have an IGM positive and be ASYMPTOMATIC so it doesn’t really tell me whether or not this is relevant

I’ve been thrown into categories by multiple doctors like reactive arthritis and prostatitis just to get me out of their office. No pathogen EVER FOUND.

I just want my life back

Post Edited (looking4acure) : 10/25/2017 5:52:30 PM (GMT-6)