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Regular Member

Date Joined Mar 2018
Total Posts : 86
   Posted 3/18/2018 1:23 AM (GMT -6)   
Okay so I need some opinions from you that know about Lyme. I'll try to keep it as short as possible. First off I am 20 years old, and I'm from Kentucky. So I have been dealing with so many symptoms for almost 2 years now and I've been to doctor after doctor and no answers. When I was living with my parents I stayed in the basement where I pulled 3 or 4 ticks off of me that I rmebeer. I didn't think anything of it. I never had the bullseye rash & I don't remember having flu like symptoms. I'm extremity frustrated and everything has fallen apart for me.

I've always been a healthy person and very active. It all started for me whenever I moved out on my own. Me and my pregnant girlfriend moved into a apartment and had a great job that I started in less then a week. My first day in the apartment was great & exciting. Then the next day I woke up and haven't felt right since. This was all about 2 months after being bitten by the last tick that I remember pulling off of me. I wondered if maybe the apartment may have had mold in it which maybe triggered the Lyme disease. It began with just feeling spacey. I just didn't feel right. My vision just didn't look like it should. I guess you could label that as brain fog. So I began to panic because I knew I was not gonna be able to start my new job feeling like that so I was determined to figure out what it was in time to start my job. Well that didn't happen... I went to a doctor that didn't know what was wrong with me. He may have thought I just had an inner ear infection so he put me on medication for that. Well I began to have crazy mood swings which would be my 2nd symptom. I was mad at the world and still kinda am. I never figured it out in time to start work so I went anyways.

My 2nd day of orientation I had a panic attack in front of a class of 60 because I had to stand up in front of the class.. which is not like me at all! i played it off like it was something else because I was embarrassed to admit I had a panic attack. Work told me to figure out what it was and bring a doctor note when I was ready to come back. Soo first I went to a cardiologist and even though my heart was throwing palpations nothing came back bad. I didn't know what to do at this point and my job called me back for another orientation so I agreed to come and brought a doctors note from the cardiologist saying everything was fine, even though I knew it wasn't.

So I began working and continuing to see doctor after doctor with no answers.. I worked for a year and felt like I was dying ever single day.. over the course of the year I had so many symptoms by then and I couldn't work anymore so I quit and moved back in with my family.. which sucks because I loved my job. But over the course of that year the symptoms I have dealt with is

1. Extreme fatigue

2. Unrefreshing sleep

3. Insomnia

4. Mood swings, anxiety, sever depressions

5. Dazed/ dream like state. Feel like I drunk some beer honestly.

6. Feeling spaced out. Constantly find myself staring into space

7. Migrating muscle pains. Sometimes sharp, sometimes stinging, and sometimes burning sensation

8. Headaches every day that only last a few minutes.

9. Very bad sweats whenever doing barely anything

10. Brain fog, just overall all cognitive decline.

11. Frequent urination

12. Constant muscle twitching

13. Balance issues.

14. Poor circulation. Wake up almost every single night with my arm asleep even if I'm not laying on it.

15. Red breakouts on my face

16. Eating binges. Feel as though my blood sugar is low even when it isn't.

17. Air hunger

18. Sore throat that comes and goes

19. Tingling fingers that are barley noticeable

20. Racing heart beat for no reason at times

21. Testicular pain

22. Vibration sensation coming from feet.

23. Daytime sleepiness.

24 Joint pain. This one I'm kinda not sure about. Most people with Lyme seem to say joint pain is there very worst symptom. I do have some joints that hurt sometimes but it's nothing like my muscle pains. I have knee pain that goes away, ankle pain at times, & shoulder pain.

So that's basically it. After having so much blood work that things that have came back is

1. Extremely low vitamin D

2. Low fsh hormone

3. Blood in urine

4. High Uric acid.

5. Low testosterone. My testestrone was only 220...
& also I was tested for Lyme which came back negative of course..

If anyone takes the time to read through this and reply I would really appreciate it. I know it was kinda long but like I said it's been a long difficult 2 years.. I'm really in need of some help and I just don't know what to do anymore.

Post Edited (BBN!!) : 3/18/2018 2:00:27 PM (GMT-6)

Regular Member

Date Joined Jun 2017
Total Posts : 237
   Posted 3/18/2018 1:52 AM (GMT -6)   
Who tested you for lyme? I had a negative Elisa, and I never remember a tick bite, but my crazy symptoms and lack of help from drs is what led me to get a different lyme test on my own after I read about the lack of reliability of the lyme tests. Also, my parents neighbor in WI tested negative on the ELISA but was ultimately treated (and got better) for lyme based upon symptoms. My naturopath ordered me one through Igenix. I believe you can get a test kit yourself, but you have to have a dr sign off on it.

Regular Member

Date Joined Mar 2018
Total Posts : 86
   Posted 3/18/2018 2:03 AM (GMT -6)   
It was my family doctor. Once it came back negative he pretty much shot the whole idea that it could be Lyme down.

Regular Member

Date Joined Jun 2017
Total Posts : 237
   Posted 3/18/2018 2:08 AM (GMT -6)   
That's what happens with the regular drs. Get an igenix test.

Regular Member

Date Joined Mar 2018
Total Posts : 86
   Posted 3/18/2018 2:09 AM (GMT -6)   
I'll look into it. Thank you for the reply!

Forum Moderator

Date Joined May 2014
Total Posts : 33927
   Posted 3/18/2018 2:34 AM (GMT -6)   
Hi BBN - welcome to our community!

You had tick bites, and then multi-systemic symptoms that are consistent with lyme disease.

The best bang for your buck with Igenex is the Lyme WB IgM and IgG for $250 total. I think it's test #'s 188 and 189 on their test sheet.
Call Igenex, and order the test kit...When you get it, take the lab req to a Dr. ..any Dr. (even a chiropractor or a ND can sign it)
Get the blood draw...and send off to Igenex via Fedex. Do this on a Monday or Igenex isn't open on the weekends - so it needs to get there before the weekend so it doesn't sit out all weekend.

If you can't find a Dr. to sign the lab req...then you can seek out a LLMD for an evaluation and get tested through him/her.
A LL Dr. is who you should be treated by....or you won't get the right combination of antibiotics and also not treated for the length of time it takes to get into remission.

If you want help finding a LLMD, just start a new thread; "Looking for LLMD in/near_____" and fill in the blank with your city/town and State.
Members can send you recommendations. But, you need to enable your email option. We don't post the names on here for the Dr.'s privacy/protection. (They can be targeted for treating lyme patients more than a few weeks - which is against the IDSA Guidelines)

You can also contact me - send me an email and I'll check my list of LLMD's and see if I have any in your area.

Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Regular Member

Date Joined Mar 2018
Total Posts : 86
   Posted 3/18/2018 2:37 AM (GMT -6)   
Thank you very much!!

Regular Member

Date Joined Jan 2018
Total Posts : 24
   Posted 3/18/2018 9:28 AM (GMT -6)   

thanks for writing in. Theres not a day goes by I don't have doubts about my diagnoses. But its stories like yours that keep me positive. Your story sounds so familiar. One of my biggest problems is the crazy frequent urination, blood in my urine and pain started in my scrotum. Its hard to come across others with these symptoms. It took me 2.25 years to get diagnosed but I knew I wasn't crazy because of that urine blood. Something was def. wrong. I finally found a good clinic and tested positive through igenex for babesia. I'm still battling after 5+ months of treatments but atleast I have hope that things can be right again. Your young and can bounce back!

Def. find a good LLmd and get the proper testing done and youll start your road to recovery.

I wish you a quick recovery!!
Trying to stay Positive!

Regular Member

Date Joined Mar 2016
Total Posts : 32
   Posted 3/18/2018 10:53 AM (GMT -6)   
Don't rely on the local docs testing for Lyme. When my first symptoms appeared my doc tested for Lyme (he never thought of testing for the coinfections) and it was negative. Over the next two years I suffered with symptoms (and still do) and then saw an LLMD who recommended Igenex testing. Lyme came back negative but Babesia and Bartonella were positive. Invest in the Igenex testing (it can be expensive) if you can.

Post Edited (swimman) : 3/18/2018 10:00:36 AM (GMT-6)

Regular Member

Date Joined Mar 2018
Total Posts : 86
   Posted 3/18/2018 11:37 AM (GMT -6)   
I appreciate the replies fellas. You guys are making me feel quite better. I'm deftiabtly gonna find a llmd. I I I wish you guys the best of luck.

Regular Member

Date Joined Oct 2017
Total Posts : 55
   Posted 3/18/2018 12:39 PM (GMT -6)   
Welcome BBN.

I'm sorry these are the circumstance under which you are here - but the good news is your nightmare likely has a name. Once you know what you are dealing with things become so much "easier".

Of your symptom list (I am a woman BTW) over the past three and half years I have suffered everything except 9, 11, 12, 13, 17, 18, 21, 22. Keep in mind they cycled - some were always there, some appeared and disappeared.

Re 23 - joint pain - I was one of the lucky ones who didn't suffer from much pain. I only started getting really bad joint pains/ arthritis towards the very end. I met one girl who was on a morphine patch 24/7 sad

One thing my LLMD stated was that the one symptom he found in all Lyme patients of his was the migratory pins and needles (your 7). For me this symptom started at the very beginning and continued throughout. In my case I got crawling, itching sensations (sometimes like cobwebs sometimes stronger) and about two years in, I started getting rashes that covered my entire body.

Another thing my LLMD pointed me to was the Horowitz MSIDS Lyme questionnaire - if you google it you can easily find it online. He uses this as a screening tool.

Keep in mind that Igenex tests can come out negative for some of us (including myself and several Lyme sufferers I know) - that doesn't mean you don't have Lyme. The existing tests are quite poor unlike most other medical tests. There are multiple studies on people with active Lyme infections yet getting negative blood results.

My recommendation is to find a good LLMD and start treatment if you have Lyme symptoms regardless of what the tests say.

Regular Member

Date Joined Mar 2018
Total Posts : 86
   Posted 3/18/2018 2:11 PM (GMT -6)   
I really appreciate your reply! One of the things I don't seem to relate to people with Lyme is the disappearing of symptoms. All of mine pretty much stay and don't go anywhere lol. But I did have intense night sweats that lasted about a month that went away. & yeah the muscle pains are defiantly there but they don't really hurt but I just notice it. I also have itchiness at times like you mentioned. I appreciate the long comment; it really helps me out. I'm defiantly leaning toward it and I'm gonna get a Lyme doctor. Thank you again & I hope you have a great day

Post Edited (BBN!!) : 3/18/2018 1:19:08 PM (GMT-6)

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