possible lyme with hla genotype help !

[fnfiacco]

I have been extremely ill for about two years now. My story is that i started out as a competitive swimmer and athlete. other than suffering repeated sinus infections that always responded to antibiotics over a course of 6 years i was apparently healthy. Well in 2012 i moved into an apartment with a room mate who was very unsanitary. the person actually brought in a dog from outside and the dog was very sick. i actually thought the dog was going to die. i soon found the dog had fleas and the fleas infested our apartment even after he had gotten rid of the dog. i had many flea bites on me legs. i treated the fleas and soon found an engorged tick on the kitchen floor. when i stomped it a bunch of blood came out. the tick had a bluish gray shell so its wasnt a brown dog tick it was either deer tick or dog tick but not the brown one cuz of the bluish shell. after i treated the apartment and the flea bites healed i remember for several weeks feeling run down and my whole body was itching all OVER. it was driving me crazy. i couldnt stop itching at night and i told my mom i think theres bed bugs or the fleas are still there. she drove an hour to see me and told me i had no bed bugs and the fleas were indeed gone.

shortly after i developed chronic shoulder pain in both shoulders, upper back and neck stiffness that has not gone away. i also developed polyarthritis in all my joints including my hips and severe tendonitis in all my tendons including elbow, wrist and ankles. some of the other symptoms i have are headaches, jaw pain, ear stuffiness, extreme depersonalization and anxiet, nausea.

I had the western blot test thru mac lab and it came neg with only one band 41iGg reactive. i went to a rheumatologist and found i have the HLA B 27 genotype which is correlated with spinal arthritis and a positive ANA 1:160 nucleolar pattern, my wbc count is always high 14.7, absolute netrophils were elevated and one liver enzyme elevated. im 28 years old

i went to see a LLMD and he is treating me for lyme he gave me a new western blot test thru igenex but i have not had the money to afford it yet. i am trying to save up for the igenex test..

i have two questions. first of all i had this gene for years and i never had any problems until i moved in the apartment got the flea bites and found the engorged tick. the rheumatolgist gave me the diagnosis of ankylosing spondylitis with possible lupus because of my ANA, the ana is always neg in ppl with spondylitis only. he thinks i have two auto immune diseases.

my concern is i really think i got lyme or am fighting some chronic bacterial infection. it makes sense with the elevated WBC count that never goes down. But i also believe hes right about the spondylitis based on my gene. I dont think its lupus i think the ana is caused by the chronic infectious disease possible lyme or something else bacterial. the nucleolar pattern in a low titer can be caused by infectious disease as well it was written on my paper. i think that i would have never got spondylitis if i had never lived in that apartment but that was the straw that kinda broke the camels back. i read somewhere where the small number lyme patients who develop persistent arthritis not responsive to antibiotics usually have an hla genotype. one that causes spine arthritis or one that causes rheumatoid.

my question is ... is it safe to take enbrel and my antibiotics so i can treat both LYME and spine arthritis at the same time?

my second question is... my LLMD is giving me ORAL antibiotics and ive had this for 2 years, i heard in the late stage a person should have IV antibiotics. can lyme or a co infection still be cured in the later stage with ORAL antibiotics?

and finally i was wondering if theres any hope for me? should i ask about the iv antibiotics? and what is the best way to prevent yeast infections from the antibiotics... yeast is bad with the ankylosing spondylitis and i keep getting them on my antibiotics.

please help !!

[JackieCalifornia]

Made me laugh!  Glad it's working.  :)

[CR97]

Thanks to Jackie, I started taking magnesium. I haven't been diagnosed but the magnesium has definitely helped. I take 500 mg twice a day and haven't had an issue. I told my wife that I was going to experiment and stop taking it to see what would happen. She quickly informed me that I wasn't going to do that. Apparently she has noticed that it has helped me too.

[JackieCalifornia]

Are you taking magnesium (Mg) supplements?  I have read that Lyme bacteria use up Mg in their reproductive process, and that can lead to twitching and aching and being out of sorts generally.  

There are some junky brands of Mg out on the market, but any kind that ends in '-ate' is supposed to be most absorbable in the body:  magnesium malate, orotate, aspartate, citrate, etc.  I still take it every day.  Just bought some Mg malate online from a reputable vitamin company and got a two month supply for about $25, iirc.

Ask a friend to look into getting funding from Lyme Light Foundation or Lyme-TAP, which are charities who may pay for testing.

[fnfiacco]

Hi Jackie ... Thanks so much for all your advice.. I was starting to reconsider the lymes diagnosis a few days ago cuz my blot test was negative. im trying to get the money to do the second one thru igenex but what do you know i lost my job over this illness its severely disabled me. my hips wont let me stand or walk for long periods and with the spine and neck issues i cant sit for long either. so im working on finding a job i can do.

right now im just taking ceftin for the lyme and im taking sulfasalazine for the ankylosing spondylitis. im going to ask my rheumatologist if i can take plaquenil instead since its also used in lyme unfortunetly i doubt the sulfas gonna work anyways cuz it uses bacteria in the gut to be broken down and since im killing it with the ceftin i doubt its going to be much use.

i was wondering if anyone else with lyme experiences severe hip/spine pain like i do? or tendonitis? i also have panic attack issues etc. and my pain level is like a 8-9 most days. i was wondering i get this muscle twitching and restless leg syndrome as well and i think its cuz of possibly lyme.

thanks for the hel p

[JackieCalifornia]

One more thought!  (Tired of me yet?)

Once established with an LLMD, appointments are often just once a month, so it's possible to live a fair distance from a favored doc and still make it work.  Doesn't have to be next door.  And recruit family and friends to drive you to appointments that are not close by -- take care!

[JackieCalifornia]

... and one more thought:  my LLMD was an immunologist by training, and you might want to see if you can find an LLMD with a similar focus in his/her practice -- s/he might be very attuned to your particular issues.  fwiw.

[JackieCalifornia]

Okay, it did have to go in two sections, and they are both above.  

Keep us posted!

[JackieCalifornia]

Part 2:
=========================================
     You say:  "...and finally i was wondering if theres any hope for me?"  

     My response:  YES!!!  Absolutely.
=========================================
     You say:  "should i ask about the iv antibiotics?"

     My response:  I'd find another doc first -- a Lyme specialist.  How to find one?

     1 -- Email to:
                          --- contact   [at]    ILADS   [dot]   org ---

and tell them generally where you live ('near Indianapolis IN') and how far you can travel.  ILADS is the main voluntary group for Lyme specialists, and they can give you names.  If the first batch (I think they send 3 names?) doesn't work, ask for more.  

     2 -- Search online for Lyme patient groups near you.  I did a google search for

        --- LLMD Indianapolis --

and see what you turn up.  I just did that search and found a number of promising leads.  Local Lyme groups can be an excellent source of information on docs.
=========================================
     You say, "and what is the best way to prevent yeast infections from the antibiotics... yeast is bad with the ankylosing spondylitis and i keep getting them on my antibiotics."

     My response:  My Lyme doc insisted on the use of yeast-based probiotics (generic:  S. boulardii: brand name: Florastor) to be sure the gut has healthy bacteria, the advantage of this brand being that yeast-based probiotics are not wiped out by antibiotics.  It works well for many people, but it didn't for me, because I am apparently sensitive to yeast, so it took over and I got very bloated and messed up, as the yeast ran wild.  My eyes were blood shot and even my teeth were loose.  Yuck.

My doc said he had never seen that happen to any of his patients, and I believe him, but I mention it just because if you are yeast-sensitive, it would be better to take regular bacteria-based probiotics (like acidophilus) but they MUST be take at least a couple of hours away from the antibiotics.  Otherwise, the antibiotics wipe out the probiotics.  If that doesn't make sense, let me know and I'll try again.

And finally, I was just about to send this response to you but found the following text that I'm not sure where it came from (I got interrupted a few times here).  From another commenter somewhere here?  Well, wherever it came from, my thoughts are below the 'mystery comment.'

     Mystery comment:  'Remember, there is no such thing as "Chronic Lyme Disease" and all infectious disease doctors know how to treat true Lyme. Long term antibiotics are not appropriate for the post lyme disease syndrome of symptoms that some folks may attribute to it. Doctors may be called "literate" because they are willing to do what YOU want or think you need. Or are willing to do it for other reasons. This does not make them a "good" doctor. Be careful.'

     My comment on that mystery comment:  Disagree!  Lyme disease can linger on for years (forever even) if it is not treated properly and completely, meaning with the right antibiotics after diagnosis of all existing infections (Lyme plus co-infections) and for a long enough time to kill all the bacteria.

What is called 'post-Lyme syndrome' is, to my reading, really just inadequately treated Lyme.  The nonLLMD approach to treatment is a few weeks of doxycycline and any remaining symptoms are an over-active immune system still fighting the now-dead Lyme infection.  More logically, it means that the Lyme bacteria hid in biofilms, slimy shields that the human immune system can't penetrate without other, specific antibiotics (e.g., Flagyl) to break open the biofilms and let the killing-antiobiotics do their work.  NonLLMDs don't understand about biofilms.  That's why it is critical to find a Lyme specialist who knows all this, and is likely an ILADS member.
=======================================
End of rant!  I may have to break this into two parts, it's gotten so long, so keep reading.  And keep us posted.

[JackieCalifornia]

Welcome to MedHelp Lyme -- we're glad to share with you what we have learned ourselves.

First thing:  is there hope for you?  YES.  Lyme is treatable and curable, tho it can be a bit of a long road.  It is definitely worth pursuing!

Besides feeling lousy, Lyme messes with the endocrine (hormonal) system, which can lead to depression.  That will go away with treatment, so hang on.

You may also hear of people who say Lyme is forever, because they themselves have apparently not been cured, but I don't know why those who are still ill don't keep pursuing a cure, because I know people (including me and in my family) who are definitely cured.  So don't give up!

The first thing to grasp is that there is a huge split in the medical community about Lyme:  how common it is or not, how to test for it, how to diagnose it, and how to treat it.  That pretty much covers all the possibilities, eh.

Lyme ticks carry not only Lyme, but often carry other separate infections that need different testing and different antibiotics.  

=========================================

To your comments:

It does sound like you may have gotten something from your roommate's dog, perhaps something from the fleas as well as a tick.  Many of us never see what bit us, and never find the bite mark, but are infected nevertheless.  A good doc won't require that you saw the insect that got you.  Your symptoms are enough.
=========================================
     You say:  "I had the western blot test thru mac lab and it came neg with only one band 41iGg reactive."  

     My response:  That band could indicate Lyme, or could be something else, from what I read.
=========================================
     You say:  "i went to a rheumatologist and found i have the HLA B 27 genotype which is correlated with spinal arthritis and a positive ANA 1:160 nucleolar pattern, my wbc count is always high 14.7, absolute netrophils were elevated and one liver enzyme elevated. im 28 years old."  

      My response:  I'm not medically trained, and this is beyond my limited knowledge, but I will say that rheumatologists are among the biggest bunch of Lyme deniers around.  As a group, they don't take Lyme seriously, so are inclined to look for other ailments to pin your misery on.
=========================================
     You say:  "i went to see a LLMD and he is treating me for lyme he gave me a new western blot test thru igenex but i have not had the money to afford it yet. i am trying to save up for the igenex test."  

     My response:  This is good -- it's what I would do.  There are groups that can fund testing for those who can't afford it.  Two of them are LymeLight Foundation and Lyme Test Access Program (aka Lyme TAP).  Take a look at their websites and see if you might qualify.
=========================================
     You say:  "i have two questions. first of all i had this gene for years and i never had any problems until i moved in the apartment got the flea bites and found the engorged tick."  

     My response:  That's good thinking.  It may be that the gene wasn't affected until the tick bite, but there is an old saying in medicine:  "When you hear hoof beats, think horses, not zebras" -- meaning, look first to the most likely reason for an ailment (horses) and not for the unlikely (zebras).  Rheumatologists as a group do not have a great reputation when it comes to taking Lyme seriously, so that doc may have been calling your horse (Lyme) a zebra (ankylosing spondylitis and lupus).  Personally, I'd keep looking at Lyme, which is at near-epidemic levels these days, before going further down the road with the rheumy.  Whether you have Lyme and/or its coinfections can be determined pretty quickly, and if you don't have it/them, then you can go back to considering the rheumy's thoughts.  I am NOT medically trained, but I'd rule out Lyme first.
=========================================
     You say:  "my concern is i really think i got lyme or am fighting some chronic bacterial infection. it makes sense with the elevated WBC count that never goes down. But i also believe hes right about the spondylitis based on my gene. I dont think its lupus i think the ana is caused by the chronic infectious disease possible lyme or something else bacterial."  

     My response:  I like your reasoning!
=========================================
     You say, "i read somewhere where the small number lyme patients who develop persistent arthritis not responsive to antibiotics usually have an hla genotype. one that causes spine arthritis or one that causes rheumatoid."  

     My response:  Again, you're better read than I, so I can't comment.
=========================================
     You say:  "my question is ... is it safe to take enbrel and my antibiotics so i can treat both LYME and spine arthritis at the same time?"  

     My response:  This is a question for a Lyme doc.  The antibiotics given for Lyme are of a particular type, and just any kind won't do.  In your situation, I would *definitely* consult with a Lyme doc before proceeding, but as mentioned -- I'm not medically trained.  
=========================================
     You say:  "my second question is... my LLMD is giving me ORAL antibiotics and ive had this for 2 years, i heard in the late stage a person should have IV antibiotics. can lyme or a co infection still be cured in the later stage with ORAL antibiotics?"  

     My response:  Short answer:  yes, oral antibiotics usually work fine.  It's a matter of getting the diagnosis right, meaning do you have 'just' Lyme, or also other tickborne infections?  They don't all respond to the same meds, and docs who are not Lyme specialists often don't think beyond doxycycline.

================see next post for part 2===============