Is Lyme Disease causing my UTI- like symptoms??

Hello.
For the past year now, I have been experiencing an almost neverending conundrum of symptoms with almost no definitive solution or answers.
A year ago, I began having a sharp pain in my groin area out of nowhere. In a days time, it lead to a swelling feeling in my perineum area. To make sure it wasn't some type of uti or std, I went to get tested and all std results were neg. Had a white blood cell check and it showed i had a high neutrophil count but was told that stress could cause this. A few days later, I developed extreme fatigue, which I also thought was stress induced but then my muscles in my legs began twitching at random when I would be at rest. I also had a cold that lingered on for almost 2 wks. I also developed what I now know is called myoclonus. Everytime, I would try to rest or go to sleep, my body would jump/ jerk and I would wake up. That's when I knew something was really wrong. I'm in my mid 20s and I was always in perfect health so to be having these issues were completely new to me. I also had a bunch of other symptoms but I will not go into detail. I posted a lengthy thread in the herpes forum because at the time, I thought I was dealing with some type of virus but all my tests for herpes have been negative.
I was having this wired feeling of burning pain in my urethra which would only occur mins After I urinate, never during. My nerves in my legs would also seem to get irritated after I urinated (twitch/burn, etc). Urologist couldn't find anything but said I might have prostatitis and gave me cipro which didn't do anything.
Finally, after doing research on muscle twitching, and nerve pain, I decided to ask my doc to test me for Lyme disease, to my surprise it came back positive. The EIA test was a low positive but the western blot had igm for 3 bands but all igg bands were negative. Doc said it was new infection but I had been having the symptoms for almost 6 months before being tested. Doc gave me 3 wks of doxy to no avail.
Was referred to infectious disease specialist and got retested after he prescribed a 15day doxy regime and this time, the EIA was again positive, but the western blot was negative for both igm and igg.
I'm still having my muscle twitchings daily and what I believe is prostate related pain that irritates my urethra. I also have this wired symptom, where my whole groin/ hip area would get burning pain/ discomfort after I have a bowel movement.  Is lyme the cause of all these symptoms since my std tests keep coming up negative? Anybody else experiencing penis pain/ groin issues that was cause by lyme?
I have soo much more I could add but this post is already lengthy. Any help would be greatly appreciated and I will continue to comment on here till a solution is found. Thanks

[Ricobord]

To my knowledge, no one has ever been able to culture Borrelia spirochetes from sperm.  There are lots of cases of couples both ending up with Lyme, but as you've already heard, that's probably because of common exposure.  There are lots of couples where one has Lyme and the other doesn't (seven years in my case), so if it is possible, it isn't consistent.

I personally think it's not transmitted sexually.  If it is possible, it would have to be rare.

[mojogal]

Hi, sorry that you have to be here.

Others will give you a more detailed answer because I am still very ill and can't write too much but wanted to give you some kind of response.

The only doctor that will treat you properly for Lyme is a Lyme literate Dr (LLMD). A month of doxy won't do it. In addition it is now said that 90% of Lyme infected people have at least 1 co-infection. I have 2.

To find an LLMD near you, send an email to ILADS  dot org. Lyme is very complicated. I was bit over 20 years ago but was misdiagnosed until last year. Waiting so long left me with severe neurological problems.

You need to get treated. If you are 25 or younger there are foundations to help you pay for treatment.

Let me know and I, or someone else, will post the names.

Good luck!

[JackieCalifornia]

Welcome to MedHelp Lyme --

You give a good history.  If you don't have copies of ALL the test results the docs did that showed a positive Lyme result, and take yourself to a Lyme specialist -- can be any kind of doc/specialist, but the tricky part is finding a doc who understands Lyme in a way that the docs you have seen already do not.

Not medically trained here, but to my reading and understanding, doxy works against Lyme only in the very early stages.  Also a few weeks of antibiotics is generally not nearly enough to kill Lyme, because of its particular characteristics unlike most other bacteria:  longer treatment (months, not weeks) is needed, and a combo of antibiotics is needed to kill the bacteria but first to break through the slimy shields the bacteria make for themselves to hide from your immune system ('biofilms').  Flagyl is a commonly used 'cyst-buster.'

Lyme ticks often also bring other diseases, perhaps half the time, and they need separate testing and usually different antibiotic treatment.  Bartonella, babesia, ehrlichiosis, a couple of others.  Most docs ignore this possibility.  These infections will not go away by themselves, nor will Lyme.  

The tests most docs use are not very good, but the docs swear by them anyway.  A Lyme specialist (called by Lyme patients an LLMD, short for Lyme-literate MD) knows what to order, what labs to use, and how to interpret the results.  And then to structure a treatment plan.

Here are my responses to your email, my note in [brackets]:

"The EIA test was a low positive [note:  at least you got a positive.  Many of us never do, but are terribly ill.  This says your immune system is hearty.]  but the western blot had igm for 3 bands but all igg bands were negative. Doc said it was new infection but I had been having the symptoms for almost 6 months before being tested.  [note:  the immune system reacts oddly to Lyme and, after a while, tends to give up make the antibodies the tests measure, so the results can be all over the place and you can still be very ill.  Not unusual.]  Doc gave me 3 wks of doxy to no avail. [note:  see comment above about doxy being less than optimal and sometimes downright useless, because it does not pierce the biofilms.]

Was referred to infectious disease specialist [note:  ID docs on the whole do NOT believe in Lyme as anything serious] and got retested after he prescribed a 15day doxy regime and this time, the EIA was again positive, but the western blot was negative for both igm and igg.  [note:  see comments above about doxy -- unless it's given to you almost immediately after infection, it won't work, due to the biofilm aspect, and also wont' work against most co-infections.  Also note that the standard Lyme tests look for your immune system's reaction to the presence of bacteria, but because most bacteria have a short life cycle, the immune system tends to shut down after a few weeks, figuring the infection has been eradicated.  Lyme doesn't play by those rules, but the immune system doesn't know that.  Lyme treatment with antibiotics is months, not weeks, {my Lyme treatment was nearly a year}, altho nonLLMDs shriek about this as improper.  Somethow the nonLLMDs never explain why it's okay and normal to treat tuberculosis, for example, for 18 months ... because TB like Lyme has a very slow reproductive cycle and it is only when the bacterial cell wall is disrupted while reproducing that the antibiotics can do the killing.  So long term antibiotics are NOT unheard, docs just scream about it being 'overtreatment' in Lyme.]

I'm still having my muscle twitchings [note:  try magnesium supplements ending in -ate, like Mg malate, citrate, etc.  Lyme bacteria use up Mg in their reproductive cycle, so it's easy to get Mg deficiency.  BE SURE to tell your Lyme doc you are taking Mg supps and how much so s/he can factor that in.] daily and what I believe is prostate related pain that irritates my urethra. I also have this wired symptom, where my whole groin/ hip area would get burning pain/ discomfort after I have a bowel movement.  Is lyme the cause of all these symptoms since my std tests keep coming up negative?   [note:  could be.  Lyme affects everyone differently, and hits the same person differently at different times, AND the variety of co-infections completely clouds the diagnostic picture.  That's why you need an LLMD.] Anybody else experiencing penis pain/ groin issues that was cause by lyme?  
==================================================

To find an LLMD:

1 -- search this site (in the 'search this community' box on the right side of the screen) for 'florida' and see if you get any mentions of anyone there  (mojogal -- are you in Florida?)

2 -- post a new message here titled something like "Need LLMD in Miami area" or wherever you are or can get to

3 -- search online for

                                   LLMD Florida

4 -- email to

                                   contact [at] ILADS [dot] org

and tell them what area you live in and how far you can travel.  ILADS is the main voluntary group for Lyme-knowledgeable docs, tho there are some oddballs there too, just keep your antennae up.  

Also, read up on Burrascano's treatment guidelines on the ILADS website.  It will tell you lots of stuff it is good to know as you go forth in battle.

Hang on, don't despair, and plow ahead.  Keep us posted, and let us know how we can help.  We've all been where you are --

[JackieCalifornia]

First part of my post is garbled ... should say if you don't have copies of your test results already done, get copies from the doc's offices and keep a set for yourself, and take a set to you new Lyme doc.  Might be useful to them.

But keeping copies of all this stuff can be useful going forward, because it's not unusual to change docs for various reasons, and you can never be sure you're getting everything useful out of the doc's files ... they hate spending money on paper and toner.

[mojogal]

I am in FL. I have a list of LLMD in Fl from my Fl support group. Let me know where in Fl you are and what large city it is near and I can send you the names. We don't mention names of LLMD here but can in a PM.

[bamboozled86]

First, I would like to thank everyone who has commented so far. You all have given sound advice and its really appreciated.  

To mojogal;
I live in Panama City Beach, FL. Whatever information you send will be appreciated. I plan to fight this disease with all I got if it is indeed the cause of all my symptoms.

[mojogal]

Is that East Coast? Is it near any other big city?
I love your attitude!

[JackieCalifornia]

YEAH!  That's the spirit!!

I was a mess, and after a journey through 20 clueless docs (everyone here has heard this story before, sorry), Doc #20 ran a Lyme test because everything else had been tried, and it came out *positive* .... which (I know now) was a minor miracle because I had been sick long enough that my antibody levels could have easily declined to become undetectable by then.

Here's the kicker:  the doc who ran the 'desperation' test told me, in very gentle tones, that I could not possibly have Lyme, because she had patients with Lyme and [this is a direct quote, burned into memory] "they are all ... near ... death."

(Way to roll over and give up!  Good grief!)  

I took the copy of the test results and found an LLMD, got fully diagnosed (Lyme + a co-infection), got treated, and got my life back.

Diagnosis and treatment are not always a straight shot, as many here can attest, but it's definitely worth doing.  Go for it!

[bamboozled86]

Thanks.

It's in the panhandle area of Florida. Right below Alabama. The only big cities I can think of that are close by are Tallahassee, Pensacola, and Mobile, AL.  The others are almost 5 hrs away.

[mojogal]

I will get looking but just so you know, there is a good chance you will have to travel. Most people do. Look for my PM soon.

[mojogal]

I have your information. Can you PM me first. I have extreme cognitive problems and can't remember how to bold text on my iPad

[JackieCalifornia]

(When I can't get text to bold properly, I will flag the important wording with ***asterisks*** or something similar.  I don't have an iPad, but I too have trouble getting stuff to be bold or italicized when sending messages or making posts.  So it's not just you!)

[mojogal]

Thanks Jackie, I thought I was having a severe case of Lyme brain.

[JackieCalifornia]

Nah, it's computers.  It seems to me that transferring text (from one document or email or website to another) or modifying it somehow (like adding bold or italics etc.) really doesn't work very well in recent times ... I fault the program designers, because I often end up with REALLY BIG font size or really tiny font, with or without bold/italics/whatever, when transferring text from one program or site to another.

I'm no techie, so don't know why it happens.  Gmail, for example --  aggggh.  I have email messages that go from HUGE type to microscopic type in the back-and-forth, and there seems to be no way to regularize it.

So rest assured:  it ain't you!

[Ricobord]

Just to add another confirmation...what you describe is consistent with Lyme Disease.  From what I have read, pelvic pain and urinary issues are more likely to be early symptoms for men.

Fortunately, you tested positive, so you have confirmation.  But you have experienced the failure of the official IDSA guidelines that recommend 3 weeks of Doxy for non-neurologic Lyme.  You'll have to go see a LLMD if you want to get well. Without further treatment odds are very good that you'll continue to get worse. Don't hesitate to travel if needed, or to see an out of network doc, if needed.  It isn't fair, but this is the fight Lyme patients have been battling for 30 years already.

One other possible source for doctor referrals is a local or state based Lyme support group. They often know who is good and who isn't.  You could also try groups in nearby states to look for other possibilities.  I know there are people driving and flying in long distance to see my doctor, so it's not uncommon. Good LLMDs are few and far between, and worth it to get your health back.

You're welcome here for support and encouragement!

[JackieCalifornia]

To follow on to Rico's comment, I've had success looking for links to Lyme disease associations by searching for things like

Georgia lyme disease association

or

Florida lyme disease association

etc.

Without quotes, so that the search picks up variations.  Those local groups can often take you to the next level to locate LLMDs.

[mojogal]

I don't want you to get discouraged, my LLMD reimburses me, files the insurance. The names I gave you, you can call them and ask.

Most of the lab tests are covered by insurance. I take oral meds and they are covered by insurance.

Some people have to drive hundred of miles, maybe out of state to find any LLMD. My LLMD is in Sarasota and she is very reasonable so if the others don't work out you can call her. Just don't give up!

[bamboozled86]

I'm sure this has been addressed in several threads on this forum but I have a big concern about this illness.
I am currently involved in a relationship and I am gravely concerned that I may somehow spread this disease to this person. I know that the CDC says that human transmission doesn't occur but I've read other people's account of possibly infecting their spouse or sig other. Although it should be noted that if both individuals live in lyme infested areas, then it makes sense if both individuals could contract it separately.
My question is, have any of you on here have first hand experience or knowledge on this subject? Should this be something I will now have to worry about? I'm fine with being infected (not really) but I could not deal if this were to pass to someone else from me. Also, I would like to have children someday in the future. How does this now affect that possibility?  This person doesn't know about my diagnosis yet because we haven't been together long and I wasn't sure what was wrong with me until recently. Docs kept saying it was all stress related. Should I tell this person about this? Or should I wait till I get further treatment and make sure that I indeed have lyme before I sound an alarm?
Any advice is appreciated.  

[JackieCalifornia]

Points to you for being concerned about your partner --

Have you asked your doc about the situation and what you should say to your partner?  An LLMD can (and should) fill you in on the possibilities and consequences.

Then, even if the doc says 'chances of transmission are low', you might have a conversation with your partner to say that you have just learned that you have Lyme and that while chances of sexual transmission are [rare][low][whatever the doc says], that your partner should consider being tested, and when and even perhaps now and in [six] months or whatever your doc recommends.

And the second step is whether condom use is recommended -- again, talk to your doc, so you can give full and fair information to your partner about going forward.

Till you get all this lined up, abstinence may be in order ... dunno.  It's my impression that sexual transmission is apparently not common, but not unheard of, tho so many of us do not know when we were infected that we also don't know HOW we were infected.  Many unknowns.

Part of your concern may be caused by Lyme anxiety --- it's a biochemical effect of the Lyme infection, and is common before treatment.  Like it's not bad enough to have an ailment, but anxiety and other potentially hormonally-related conditions are a real thing in Lyme.  Don't beat yourself up about it, because it will get better with treatment.  (If you're not on magnesium supplements, you may want to consider it, because low magnesium often happens in Lyme.  Any type ending in '-ate' is what I was told:  magnesium citrate, malate, orotate, aspartate, etc.)

The sooner you talk with your doc about this, the sooner you can talk to your partner, so make the call to your doc today.  You'll feel better for having done the right thing.  

Hang in there --

[mojogal]

I had the same concern with my fiancée. He came with me to the LLMD and we discussed the issue. She said there is no clear proof either way but she felt the chances were very low in transmitting the illness.

I know you may not be that close to your new Partner but I think it is very thoughtful of you to be concerned.

I agree with Jackie, see what your doctor says and go from there.

I can also vouch for the Lyme anxiety, I have it badly. My fiancée is aware of how bad it can be and is very understanding about it.

[JackieCalifornia]

I may have said this before, but I am a big fan of your fiance!  

[Ricobord]

To my knowledge, no one has ever been able to culture Borrelia spirochetes from sperm.  There are lots of cases of couples both ending up with Lyme, but as you've already heard, that's probably because of common exposure.  There are lots of couples where one has Lyme and the other doesn't (seven years in my case), so if it is possible, it isn't consistent.

I personally think it's not transmitted sexually.  If it is possible, it would have to be rare.

[bamboozled86]

Ooops. I didn't mean to select a particular response as a "Best Answer".  It was an accident. All the responses have been very helpful so far. This is for whomever reads this post in the future.

[JackieCalifornia]

No worries ... those 'best answer' things seem to pop up at odd moments and get themselves checked by surprise.  :)   Like a group hug, this place is definitely a group effort:  Us versus Lyme!