Lyme OR Lupus?

The pattern of hep2/Ana also is homogenous and an Ana test from a different lab just last year was negative.

Hi Savedbygrace!

Are you still being exposed to mold in your environment (home/work)? Did you treat mold?

Before I was finally diagnosed with lyme by a naturopath, the doctors diagnosed me with autoimmune conditions, one rheumatologist gave me the diagnosis of Sjogren's syndrome, and the other of fibromyalgia. My ANA was borderline but still negative. Lyme can cause a postivie ANA. I am sorry, I am not familiar with other antibodies.
Dr Izabella Wentz I think also mentions mold as one of the potential causes for Hashi's.
It can cause many symptoms that are similar to those of an autoimmune condition like lupus. I would get numb limbs, paleness in my skin, dark circles around eyes, palpitations, fatigue etc etc. The symptoms will depend on the type of toxic mold you are exposed to.
Mold isn't necessarily visible, it can be in vent ducts, HVACs, in drywall etc.

Did you treat lyme and bartonella for long enough? As Girlie said, it would be the best idea to see a LLMD, that is laso well versed in treating mold.

Antibiotics make me sicker than ever and my gut is horrible with them that I really don’t want to go back down that road again. My naturopath does want to life up my immune system and the new functional medicine doctor I am seeing understands Lyme but also doesn’t want to treat me with antibiotics. She’s talking more about ozone, herbal extracts, cistus tea, and possibly coffee enemas and such.
With antibiotics I was on 5 of them at one point for about 15 months and got very depressed and very sick. My husband said he couldn’t even recognize me and was fearful I would die. With the Bartonella also I know we didn’t treat it long enough. I plateaued with the doc too as she started blaming everything on the fact I live with cats and have cat allergies in my blood work. Also we’ve had the house checked multiple times for mold (no signs what so ever and no moisture detected in walls) and just got our air vents cleaned this year.

It is reassuring Lyme could be causing all these autoimmune type symptoms and possible causing the bloodwork. It’s just been so hard lately. I’m actually getting a new job as the standing and cold ac I just can’t handle well and the stress the job brings (I’m a teller at a bank). I see my naturopath Monday about the vein issues and cold hands and so we’ll have to see what he says.

PS my bloodwork was without treating the Lyme and co-infections...I was between doctors at that time.

Again thank you all for everything!

Sounds like your naturopath has some good ideas, but I am concerned that you have autoimmune issues (as indicated by tests) with a medical practitioner who is telling you to enliven your immune system. Is your naturopath well-versed in ways to do that without exacerbating autoimmune conditions? I'm very interested in this!

I hear you about antibiotics; pharmaceuticals are not an option for me, either. In the case of autoimmune disease and Lyme, rife and similar technologies can be a great option (and would not mess up your gut). Ozone, homeopathy, infrared light therapy, DNRS, and other modalities also can be helpful without exacerbating autoimmune issues. I love herbalism, though, so if you find a way to treat herbally that works especially well with autoimmune illness then please let me know!

Ok let me clear up some of my writing. I was headed to work today and so it looks as though I messed it all up lol. I am going to rewrite my Lyme history so you all have a better understanding:

-I was treated with a LLMD from 2/2014-4/2015 with antibiotics (minocycline, doxycycline, tindamax, plaquenil, azithromycin and possibly others) and thats when I got really sick
-In 6/2015 I did homeopathics and bcx with a natural clinic and some supplements - felt pretty good then and continued through too 2016
-In 2016 I also found a provider who had a rife styled machine (I bought) and so I started with her and was feeling good and she was telling me what frequencies and tones to do
-In 10/2016 I was in a rear end car accident and it really messed things up and we continued with the rife styled machine till 10/2017 when the provider no longer was providing the treatments
-12/2017 I started having heart palpitations and feeling bad and so I went to a new LLMD
I was diagnosed with another case of Mycoplasma, Sinus infection with 2 bacterias to start with
-Later into 2018 I was diagnosed with SIBO and Bartonella Henselae (treated SIBO with Xifaxan for 1 month and Bartonella with Azithromycin and Clarithromycin for 2 months and with some of the Buhner's herbals)
-Molds also were diagnosed again around 9/2018 along with allergies to many outside things and cats
-Also 7/2018 I had a bullseye rash from a mosquito bite (I think it was a mosquito-not 100% sure)
-10/2018 the LLMD I was then seeing now is blaming everything on my cats even though they moved in, in 2012 and then I wasn't feeling that bad. She also shrugged off the bite I had and so I just gave up on her.

(Since 2010 I had always known something was lurking besides my thyroid issues as I had achy knees and numbness in my face but it was all being blamed on my thyroid (which has been enlarged since I was 15 (2005). I was not diagnosed with hypothyroidism till after my first child was almost 1 (2010) (Hashi's dx in 2012 as I demanded it since I am very thin and knew I had more than just hypo issues))).

11/2018 I went back to the natural clinic (they also do bio-meridian testing) and they said that lyme and bartonella were all gone...had a hard time believing it. They just had me do BCX for some female issues I continue to have and put me on a lot of supplements. I mean a lot lol

Fast forward to the last couple months as to where my cycle has gotten more strange (spotting before every period, drier in the middle of it, breast and lymph pain bad before each cycle, etc.), I'm getting the spider veins in my legs, losing a lot of hair to where its even been noticeable at my hair line, Raynaud's type symptoms in my hands (turning white in fingers with cold and stress), and am just feeling depressed and frustrated.
I started seeing the LLFMD (lyme literate functional medicine doc) in April 2018 who has had me started herbal extracts, cistus tea, and l-glutathione (liposomal oral), and GI Detox supplement. She is very knowledgeable in Lyme, Genes, and knows some about autoimmune issues. We're waiting for my nutrient bloodwork, 24 urine hormone test, and recent CBC, CMP, and thyroid labs all to come back.
My ND on the other hand is not Lyme literate. He is more of the one who does my routine stuff and I will be seeing him Monday about the vein stuff/hand stuff and hair loss. He's very thorough with thyroids as well. He also wants to work on healing my gut.

I just am at a loss of what to do to or how to feel about the autoimmune stuff going on and how to "cure" eveything that's been going on or at least stop it in it's tracks.

Thank you all for everything and all of your advice!

We have had a restoration company check with there moisture meter on the drywall, a mold inspection company do an air test and tape test on the house a year ago, and now the vent guys checked and just saw building debree and dead bugs in the vents. I have looked into the ERMI testing and no one does it in my area and we did fix the door where we had a leak and did throw out the tac strip recently that did look like it had mold on it and bleached it and we’ve cleaned out quite a few of our windows. Other than that no visible signs of mold anywhere in the house and no other signs of water leakage.

acarined said...
Anecdotally, I see more ANAs with Bart than Lyme.

Very interesting. I have positive ana (speckled type). And also low positive rheum factor.

The finger discoloring sounds like Raynaud’s. I get more numbness when I’m cold but no discoloration. I also thought I had lupus bc I had a rash across cheeks years before neuro symptoms which was diagnosed as rosacea but it was not.

For the autoimmune stuff, I think it makes more sense to go after a possible root cause rather than throw steroids or other immunosuppressive drugs at it.

The ERMI can be done yourself - order a dust cloth through mycometrics.

Please keep me updated on how you’re doing. I am similar to you health wise. Thanks!!

SFB’sWife said...
Please keep me updated on how you’re doing. I am similar to you health wise. Thanks!!

Hello SFB’sWife - welcome.

Feel free to start a new thread and introduce yourself - tell us your story (if you want)

I am very excited to read your story. I’d love to know how similar our health is and what similar symptoms and things we have going on. Just love a group like this where we all can support each other!!

Zimica - great point. I can’t tolerate abx either.

Savedbygrace - The ERMI test is a couple hundred dollars. Well worth it in my mind. However, the best way to test it all out would be to leave for a bit if you could. Easier said than done, I know. We left on vaca for a week and my frequent urination immediately dissapeared. I had energy and felt almost normal. This has happened twice for me. I think time will give you more answers. Try treating lyme/bart herbally would be a good idea. And definitely check the thyroid. Best of luck!

Savedbygrace12 said...
The thing that stresses me out with more mold testing would be to do the ERMI test get a positive result and have no idea where to look for it. How would you get rid of it? I honestly really wonder if the mold was just where the back door had water coming in. Only place we saw what looked like some on the carpet tac strip however we took that tac strip out and bleached the area. We also fixed the leak with the water coming in through the door. We are going to replace the carpet too this year. We live in a paid off town home we want to renovate this year.
The issue also is where I live there’s also a lot of mold outdoors. I’ve sneezed right as I’ve entered the city I live in.

I have never really done a full treatment with the molds for my body. A little with the antifungals 4-5 years ago but not much else. The focus has always been Bart, Lyme, Mycoplasma, Sinus Infection, and a little bit with the SIBO.

The lady who does rife-styled frequencies though I see tomorrow and so I’ll ask her about the mold. We did a whole house frequency for mold years ago with her and so I’ll ask her about them again.

Thanks you guys for your help!

I totally get it. The thought of remediation is overwhelming. And it may not even be an issue for you. If you're planning on doing a reno soon, maybe that would uncover possible issues? It does seem that often when people don't see progress with lyme treatment it ends up being mold illness. Another big one is dental issues or parasites.

Have you had any of the Shoemaker blood tests that are usually abnormal with mold? If you have insurance, they should be covered. Mine were anyway.
https://www.survivingmold.com/diagnosis/lab-tests

I'm very interested in what the rife frequencies uncover. That is one thing I have not tried yet.