May not of been all thyroid.. I just tested positive for lymes

[juliva]

I just got back from my GP and I'm in a stupor my blood work came back positive for lymes disease :(  I'm heading to a infectious disease control doctor tomorrow. They did run a Western Blot test which I understand is the only really accurate test and I did test positive in 2 or the 3 for the antibodies.

I've read on lymes before I got the results today and knew it wasn't a dx I'd like to have.. I guess there is still a chance that it is a negative false positive reading. If my GP is correct she felt that I was exposed at some point but because I've been on so many antibiotic's I should be fine.. I think it may have been just kind words trying to comfort me? However I showed Non Reactive in ten on the ten tests so maybe I have hope?

I'll talk to the specialist tomorrow and hopefully this will not be so. I'm not so sure what life will be if I have it. Keep me in your thoughts and prayers. Juli

[juliva]

Call your States Lyme Disease ***. ask them for a name of a good Lyme Literate Doctor. If you can't find one let me know and I'll see what I can do.
The President of our state seems to be nation wide in her knowledge as to who's who.

[juliva]

MD DO one is not better then another just depends if one like's MD's or DO's.
My LLDO is just closer for me. Yes, you went to the very best in MI and my LLDO is just as  good.. as a matter of fact they conference together very often. Only difference is my LLDO has lyme along with his wife! It was encouraging to me that he is a picture of health now!

[Galsal59]

Moose - LLMDs means Lyme Literate Medical Doctor.  Never heard of a an LLDO.  I was Ms Lyme 200x can't recall the exact year at the annual summer gathering in Gettysburg.  major names involving LD were present and it was a great conference.

[foreverlostmom]

Can you order a western blot yourself without going through a doctor like the adreanals?

[LazyMoose]

Lyme Disease Medical Doctor

what is LLDO ?

Are these doctors rare to find, I never heard of them before.

[juliva]

OOPs! I meant to say only 30% do get a rash.

[juliva]

The labs name is IgeneX labs in CA. Western Blot test is the most accurate testing for lyme. Kinda like FT3 FT4 and really knowing the truth about the accuracy when mainstream writes it off most of the time. However, 50-60 percent of the people who have lyme don't test positive. Lucky me? I suppose!

I never had a rash 30% never get one when bitten. Our local lab here tested me (Quest Labs) and I tested positive so step two was to do a Western Blot and again I tested positive. It is important to go to a LLMD because a mainstream Infectious Disease Doctor may have wrote me off and told me I don't have active lyme. But then again I can't be certain.

My LLDO is testing bands more in-depth that Quest didn't test me for seems they only skimmed the surface using the Western Blot testing. Maybe so CDC can deny the statics? Seems to be the warning from those who have lived it.
I'll know more in a few weeks.

Maybe a trip to a LLMD or LLDO might be worth checking into deeper? At least get it ruled out. When my thyroid got out of whack my symptoms were worse but just lingered and seemed prolonged more so then others here on the forum but as I adjusted my thyroid meds I did get 80% better but just couldn't get over the hump.

I'm still trying to get my head wrapped around all this.. today I wonder if I can do this. Just seems overwhelming. I'm the last to put a antibiotic into my mouth unless I'm near death.. seems I don't have much of a choice now other then to poison myself and God knows for how long.

I hope all goes well for you I know all this can play havoc especially when we are having nerve burning and pain. But on a happy note.. mine is much better if not completely gone now so I suppose I should be happy the Doxy is working.

[LazyMoose]

I seem to be getting better very slow. Its not daily, more like in two week intervals! Since I am one of those whose main hypo symptom is major muscle pain, and since I was an avid outdoors person in this 'deer tic state', I might look into another Western Blot and / or Genex (Genix?) test myself. Mine was so long ago I dont remember.

I have never been totally symptom free from what is presumed to be only from years of hypo. But I dont remember having flu like symptoms that my Lymes friend had to go along with the body pain.

[juliva]

Thanks LazyMooose,

I've been taking that from the get go but found it really didn't help me much but I do know many find it beneficial. As of today I'm not in any pain and my joint stiffness is almost gone. I can't believe I've only been on Doxy for 4 days and I feel like I could almost run again (but i won't) Lol!

Thanks for thinking of me.. I haven't been on here much because I have been scaring myself half to to death reading all I can trying to educate myself over on the Lyme forum. Lol!

How are you feeling? How's them feet?  

[LazyMoose]

Might try this for your aches and pain. A friend with lymes swears by this stuff: concentrated tart cherry juice. Its in the refrigerated section near the expensive juices-in a liquid quart.

Cherry is an ant-inflammatory as well as eliminating free radicals and all that other fancy talk. He says it does wonders with his two year journey on antibiotics.

[Galsal59]

Was this IgG or IgM?  It makes a difference as one is representing an Active and the other an Older infection.  Band 41 represents the Flagellin or the tail of the bacteria that specifically causes Lyme.  Band 23 represents the outer service protein of the specific bacteria that causes Lyme.

Overall, the treatment is the same though...stronger than normal abx.

I'm glad you had a good feeling about the LLMD btw.

[Galsal59]

Yes, it's been found through research to obtain Lyme from the transmission of bodily fluid, which includes blood.  That is why no one with an active infection (if known about, of course) is to donate blood.  For that matter, Babesiosis will cause one to never be permitted to donate blood again as it's a Protoza and not a Bacteria.  

[TamraW]

My friend has Lymes and she thinks she got it from a blood transfusion. Is this possible?

I'm so glad you found a good doctor who will help you on your path to wellness. Yay for going gluten free!

I have to say that I am finding better health from my naturopath as well. He and his team of doctors are well educated on Hashimoto's and the thyroid/gut connection.

:) Tamra

[juliva]

Update"

Went to a AWESOME LLDO naturopath that takes my medical insurance. He is well versed in lymes. Not only does he have lymes but his wife as well.

Tamra, you'll like this one he wants me gluten free :) and no sugar.

He said YES it can be cured but not all can be but it's looking good for me. He ordered more WB testing from a special lab to check for co infections. I'm starting abx tomorrow.

LLDO said I could get worse before I get better on treatment.. I think they call it herxing. (I hope i don't find out the meaning of that)  Hitting me strong and long but I guess that is best for cure. He also said he believes beyond a doubt that Lyme can be transmitted by mosquito's, flea's and sexual contact. He said it is getting worse then CDC admits he said it is becoming epidemic in many areas.

[Smilerdeb]

Great to hear Juli...if caught early, usually antibiotic treatment will get rid of it.

[Smilerdeb]

Great to hear Juli...if caught early, usually antibiotic treatment will get rid of it.

[juliva]

Thanks Tamra, I spoke to the Michigan Lyme Disease ***. yesterday and they said it is NOT tranmitted via person to person! The RN I spoke to had it 17 years ago and was in so much pain she was on the closet floor begging God to take away her pain and if He did she would help others. He did and she the president of MLDA and the phone rings directly to her home. Seems she gets  350 calls a month and yet only 135 are reported to the CDC from MI.

I heading to a Nauropath LLDO this morning but does sound like I got some work to do however, it is appearing this is early infection and so possible cure.

[TamraW]

I am so sorry you got hit with this double whammy. You may also have adrenal fatigue, because it's common in Hashimoto's patients, so be sure to get tested with the 24 hour saliva. As if you need another ailment!

:( Tamra

[juliva]

Others? I'm feeling alone here. Lol!

I just called a LLDO office and the receptionist told me I do have lyme by my test results I had given her. She was surprised that I had clearly tested positive. She also asked me if I smoked I told her NO she said the doctor won't treat smokers ;o

I've heard I've lucky to find a LLDO so close.. 30 miles from me.
I'll be going in tomorrow I cancelled the infectious disease doc.

[TamraW]

I find it interesting that so many people on this site with Hashimoto's also have Lyme. I do wonder if Lyme triggered the thyroid antibodies. :) T.

[Galsal59]

Read what I wrote...IF one shows with Bands that could ONLY come from the Lyme bacteria, that warrants a clinical dx of Lyme.  Period.  What you referenced about the CDC and Western Blot is about that test.  The CDC specifically directs that Lyme is a Clinical dx and tests are merely backup.

[juliva]

I just went to the site you gave me and according to the site I don't meet the criteria I showed 23 and 41 IGM Bands.

The CDC criteria for a positive WB are as follows:

For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.
For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.

Could this be a FALSE Positive reading possibily? I suppose I'll find out today.

[Galsal59]

If you have those sensitivities, I feel for you and the upcoming treatment then.  Stronger doses than normal of abx are used to treat LD.

Also...know this.  You MUST test and treat any co-infections BEFORE starting to treat the LD.  Anything else and the treatment is only a waste of time and $$.

[Galsal59]

23-25: Outer surface protein C (osp C).

A good link at explaining the Western Blot - http://www.lymenet.de/labtests/brenner.htm

A GOOD doc will pay attention to any positive or indeterminate findings on the Western Blot regardless whether there is the requisite number of bands found or not.  The reason being...those found can ONLY be from LD and therefore require treatment.

Lyme is called the Great Imitator and can mimic a good 200 medical conditions.  Additionally, a huge percentage of the population may well have it and don't know it.  It has greater numbers than West Nile Virus yet which one gets the funding for research and attention in the medical world.  Lyme might be transmitted via sexual intercourse but no research has been done specifically.  Considering the bacteria is a cousin to Syphllis, why not.  Hence, the reason long-term abx works.