Lyme?

[Melroxygirl]

Well, I don't know where to start so I will try my hardest to start from the beginning...

I remember having issues with joints for quite some time...like upwards of 10 years...

I can remember my younger years (I am on the fast track to 28) and I remember having a bullseye on my left left.  I do not exactly remember when this was, I just vaguely remember it.

It really started in 2003.  I started with the joint pain.  I thought I had just did too much when I was younger.  Days turned into weeks, weeks into years.  I was constantly in pain and having huge difficulties waking up in the morning and functioning because I hurt so badly.

In January 2005, I had surgery on my right hand for carpal tunnel syndrome.  My docs repeatedly told me, I was entirely to young for this (ripe old age of 21).

I got married in May of 2005 (started birth control a month or two before this).

Was seeing a doc in 2006 (rhumatologist).  He told me he could tell I was feeling pain because my Sed Rate was elevated but had done significant testing and NOTHING was showing.  In January of 2007, I had my left wrist done for carpal tunnel.

In August of 2007, I sprained my ankle severely.  Nothing helped.  Was to see a therapist, to no avail.  Saw a surgeon, to know avail.  Started on steroids during a cruise vacation to the western carribean.  Felt wonderful...came home, finished the steroids and was back to square one, only worse.  Joints hurt 10x worse than before.

Went to see a different Rhumatologist who diagnosed me with RA without any blood work and wanted me to start on methyltrexate (I believe).  I was seriously considering a family at this time and that particular drug could cause severe damage to a fetus.  So I went back to my old Rhumatologist.  Tons more blood work.  Called from doc that I needed to see an infectious disease doc.

Went to see that doc.  He advised at the time I had the human parvovirus, mono and strep.  Courtesy of my cruise vacation it seems.  Went back to my rhumatologist who again said my sed rate was elevated, continue with ibuprofen and I don't know how else to help you...

Okay so now this is where things really start going....

In May 2008, I got pregnant with my son...due in February 2009.  I FELT WONDERFUL MY ENTIRE PREGNANCY.  No joint pain!  I had never felt so great.  He was born in January 2009...approximately 4 months later, joint pain returned, only worse yet again.  I thought at this time it was the birth control doing it to me.  Stopped birth control, but still had the joint pain, got pregnant with my daughter in November 2009.  I FELT WONDERFUL AGAIN.  She was born in August 2010.  Four months later...it all starts again.

So looking back, at that point, I thought it was because I was drinking diet pop and having all this joint pain (from the aspartame).  

Gall bladder out in March 2011 for severe stones...

So now here I am today.  Went to PCP, did lyme test...of course negative (I had done extensive research at this time because my mom ended up with bells palsy from lyme).

My symptoms:

Fatigue, "Brain Fog", Joint pain (Neck, lower back, hands, wrists, knees, occasional hips, and ankle), blurry vision, UTIs often, Heart Palpitations, Rib Pain, Random Stabbing Pains, Headaches, Feeling of being lost, Horrible Jaw pain, tingling feeling in my face, swollen persistant gland in neck, persistant sore throat, persistant cough, and the infamous hard time reading more than 5 line paragraphs...

Also, symptoms get a lot worse with stress.  I am currently going through a divorce and with having 2 young ones and working full time, the stress is unbearable at times...

So here I am...have at me.  Let me know your thoughts...

Know this, I am scheduled with an LLMD October 24th.  He has ordered a ton of blood work...Sed Rate up still (36) from 2 weeks before of (31), which was still elevated.  Western Blot has not returned at this point.  Still awaiting results for that.

Thoughts on any, all?  Do you think I need to worry about my children if I come back positive and have them checked as well?  

[Rutasegal]

Hi all,

I've had Lyme on and off since 2000, and learned just recently that Mycoplasma is a common confection, which can also cause all of the symptoms that you described. It can be tested with PCR as we'll. I'm taking a combo of natural remedies, including Mycologic, E-Lyme-inare, with quinine bark, and hoping for the best. There's is also a traditional antibiotic treatment that can be used in combo with doxycycline for Mycoplasma. There's a good book on amazon called "treating Lyme confections: bartonella and mycoplasma" by Buhner
Good lucky& hope that everyone feels better!
Ruta

[Rutasegal]

Hi all,

I've had Lyme on and off since 2000, and learned just recently that Mycoplasma is a common confection, which can also cause all of the symptoms that you described. It can be tested with PCR as we'll. I'm taking a combo of natural remedies, including Mycologic, E-Lyme-inare, with quinine bark, and hoping for the best. There's is also a traditional antibiotic treatment that can be used in combo with doxycycline for Mycoplasma. There's a good book on amazon called "treating Lyme confections: bartonella and mycoplasma" by Buhner
Good lucky& hope that everyone feels better!
Ruta

[JackieCalifornia]

Perhaps the other test is LUAT -- Lyme urine antigen test.  My doc didn't use that one when I was treated a few years ago, and I think it may be more recent.  The thing about Lyme & Co:  it's different in everyone, and the medical world is still trying to figure out the best ways to treat and diagnose.

I'd not heard of Marcozyme before.  Looks like it's an anti-inflammatory?  I am not familiar with MMS either.  Every LLMD does things differently, because it's a rapidly developing area of medicine.  Some LLMDs are all herbal, all the time (like Buhner's approach, but he's not a doc); some are all antibiotics all the time (like my LLMD was); and some are a combo.  And within those three types, there is a lot of overlap, and a lot of different approaches.  There are people here who take antibiotics my doc didn't use, but they also have different co-infections than I did sometimes.  It's all over the place.

Now that I am past treatment by the LLMD, my current regular doc, who has a healthy respect for Lyme, has me on a bunch of supplements etc. and they have been a huge part of rebuilding my immune system and my well-being after the antibiotics were over.  So I think well of docs who keep an eye toward that.

You know the old curse:  "May you live in interesting times" -- ?  I think there should be a variation on that:  "May you have an interesting disease."  And Lyme sure qualifies!

Others here may have comments on the supplements you mention.

Hang in there -- let us know what you find out from the doc!

[Melroxygirl]

Awesome.  I will definately ask the doc regarding the kiddos.  Because if I am correct in my assumption, I possibly had lyme when I was pregnant with both of my kiddos.

I do believe he will be doing 2 more tests per the paperwork that he sent me.  One will be a Western Blot through Igenex and the urine one through Igenex also (unknown on the name of it).

I am looking forward to this appointmet immensely as I am praying this might just be what I finally needed to get over a huge hump in my life.  I understand it can definately be costly but right now, I need to be able to take care of me and the kids before anything else!

Thank you for posting back.  I see you post and are pretty knowledgeable.  With that, what are your thoughts with using Marcozyme as well as the antibiotics?  And also, have you heard of anyone using MMS?  It I believe is called Miracle Mineral Supplement?  Any thoughts on those?

[JackieCalifornia]

Welcome to MedHelp -- sorry to hear all that you've been through -- but you're doing what I would do, keep on asking questions till you get answers that work.

Neurologists and infectious disease (ID) docs are among the most resistant to diagnosing and treating, for historical reasons.  Seeing an LLMD is exactly what I would do, and is what I did (after seeing a couple of neuros and a couple of ID docs and and another dozen docs, but getting the same kind of answers you did).  

Ask the LLMD if your kids should be tested.  I had my kid tested (even without the kind of symptoms I was having) after I was diagnosed, and it turns out the kid had Lyme and a coinfection that I also had.  I think it's possible to pass it to a baby, but it's also possible that your kids got it the same way you did:  getting bitten by a tick.  There are lots of people from Penn. who post here, so it's definitely tick and Lyme territory.

Also be aware that if it's been a long time since you were infected (as it sounds like you were), then the W.Blot and ELISA tests aren't very accurate because they measure your immune system reaction to the bacteria, and after a while, your immune system gives up reacting, assuming that it must have killed all the bacteria.  

Lyme however isn't that simple.  My LLMD used ELISA and W. Blot plus an additional test, called PCR, through IGeneX Labs in Palo Alto CA.  It measures not the immune system reaction but instead looks for bits of Lyme bacteria DNA in your blood (as I understand it, but I'm not medically trained.)  So your doc may test you with that, or may not feel it's needed, dunno.  The doc may also, based on your symptoms, test you for other diseases the ticks also carry, which often need different treatment from Lyme.  (The fun never ends.)

Feeling good during pregnancy is Mama Nature's trick to keep the stress away so the baby grows in a happy environment, I think.  I felt that same wonderfulness, and my life was in chaos for nonLyme reasons at the time -- amazing, isn't it?

Good for you for persevering!  Let us know what happens at your appointment -- fingers and toes here ALL crossed for good luck for you.  Best wishes to you and yours --