Improvements but far from healed

Hi everybody, I was here for just a short time a couple months ago and wanted to check back. I went to a llmd and got a 2nd negative Lyme test and a negative Bartonella, which is what she suspected. After discussion and high inflammation results she 'thought' (no formal diagnosis) that I had mold illness. I was put on cholestyramine 4xdaily while waiting for the last lab result which takes a month - c4a (another inflammation) .. it came back in normal range but for mold it should have been high. She said It meant I either didn't have mold or lyme or that my body doesn't make c4a well. Anyway I had begun to feel much better and although very slowly, symptoms were improving so she said I should continue on with it. I can't help but wonder if I don't have mold, but a co infection.. and if I truly can get all the way better with just this binder, which I know will still take a long time. The 10 lab tests that she did run were over $2000 and I'm still waiting to see how much my part is. And then on top of that the tests could still come back negative. I feel like I'm just out there in limbo and it haunts me what is truly wrong with me. Just thought maybe you guys could offer some advice. Compared to how I was doing I'm like 70% better, but the symptoms that persist are the burning feet..arthritis in hands.. face crawling sensations.. fatigue..muscle weakness in right lower arm.. red eyes. The horrible flu like symptoms (which put me out of work for 3 weeks) are like 95% gone. I feel like I shouldn't be complaining because I've read some of the horror stories on here, but do you all think I can get all the way better on just a binder if it is a coinfection? Thanks for listening and I'm glad to be back here and at least just talking.

Hi sorry you are going through this. you are having symptoms so you need treatment not just binders.

Crawling can be Lyme, Bartonella. Maybe other co infections but I have Bartonella and crawling sensations is one of my symptoms.

Keep searching for answers and If your instincts tell you that you are not comfortable with the llmd your with then seek out another one. members here might have recommendations for good ones in your area.


Take care and I wish you the best of healing, You will figure this out, Jo

Ty for your responses... yes it was wb and all no bands for Lyme at all nor bart. I know if it IS mold then eventually the binder will remove it all. I guess I just won't know until I either get all the way better or not. Is being 70% better in 6 weeks on binder alone not an indicator of sorts?... this wouldn't be the case if it was a coinfection instead of mold?

It was Quest Diagnostics: Lyme Ab, Immunobit lgG, lgM - w - bands

Bart species AB lgG, lgM w/Reflex

2 things kinda happened at same time - I went from being in a certain home less than an hour a day to a whole 12 hr shift (crawling bugs sensation on face) started about 1-2 weeks after this ... and my sister remembers me having a large round area on my body and asking me what it was (I vaguely remember) - I react badly to any type of bite and scratch like crazy. The bug symptom was the only 'glaring' one I had for an entire 7 months.. then numbness in hands.. muscle weakness..fatigue.. core vibrations.. bottoms of feet burning and it just went on n on after that until I felt awful w flu like symptoms. This whole ordeal has just sucked and not getting straight forward answers is beyond frustrating. My Doc reminds me of 'House' from t.v. but swears she WILL get me better. I don't think she likes explaining things to me because it's all a fuzzy puzzle to her too.

How is igenix different. I tested non reactive to all Lyme bands.

Hi, sorry you're going through this- I feel so lucky that I tested positive for Lyme & barttonella ( and suspect a few more) . How awful it must be trying to puzzle this all out!

Your symptoms sure sound like Lyme & co to me, but I don't know enough about mold sickness to understand if all these symptoms could all be only mold related.

The big round skin rash sounds like an EM- a telltale Lyme symptom! I had one , but didn't realize what it was until years later looking online & seeing another person who had one that looked like mine- it wasn't the classical bullseye- it was more of a big SUPER bright pink round rash.

As far as the mold goes; I'm not sure if it would be an option as this is your place of work and not your own house, but I've had several experiences with mold and found cleaning up areas w/ suspectedmold spores with white vinegar mixed with tea tree oil to be even more effective ( and much healthier to breathe) than bleach

. You can put it in a spray bottle and just kinda go crazy with it. (I'd still use a mask though) just to be on the safe side. The other nice part about using vineager/teatree is that you can leave it on the surfaces if you want to, no need to rinse. You can also add other essential oils , i.e.) lavender, Oregano , etc.

If you're worried about this mans clothing bringing in spores you could wash his clothes in regular laundry detergent with the vinegar/ tea tree oil added .( if he's ok with that!)

Last of all, you could get a Heppa (sp?) room filter - there are a wide variety to choose from, some very effective for keeping mold out of the air & also from spreading. I'm guessing it that might not be a realistic option at work though, unless you spend most of your time in one area.

I had pretty bad mold at a neighbors house & my own several years ago. We used bleach & tea tree oil to clean her house & no heppa filter -we all got sick.

When it was time to clean the mold out of my place, I got the heppa filters running prior to beginning the cleanup with viniger & teatree. Made a HUGE difference !

Ps. Just an additional thought? Do you have sensitively issues with detergents as well as mold & Lyme & co? Because I do- and the symptoms of feelings of 'dust on face & some crawling sensations ' do remind me of some of the beginning symptoms I had in relation to certain detergents. I do believe these sensitivities are caused by Lyme & co & possibly exasperated by mold- but thought it might be worth considering in your case as you try to rule everything out...

Best of luck figuring things out !

many lyme docs suggest getting checked by a biological dds-I thinks it well worth a check up

Thanks again for the responses ... I have read some of shoemaker and it's horrifying!.. I was overwhelmed as well as discouraged when he talks of the measures one needs to go to to get well. One of the saddest things I've had to deal with this past year is trying to comprehend all the information I'm reading with a muddled foggy brain. I've taken time off from work and transferred locations .. have made lots of changes and it's not even a drop in the bucket in the big picture. I've stressed to the point of injuring my serenity and spiritual life, I just can't and won't do all the things he speaks of .. not to mention I cannot afford most. I feel like I've done the most imperative. Do you guys know what I mean?..how much is just too much??

Sweetlife said...
Thanks again for the responses ... I have read some of shoemaker and it's horrifying!.. I was overwhelmed as well as discouraged when he talks of the measures one needs to go to to get well. One of the saddest things I've had to deal with this past year is trying to comprehend all the information I'm reading with a muddled foggy brain. I've taken time off from work and transferred locations .. have made lots of changes and it's not even a drop in the bucket in the big picture. I've stressed to the point of injuring my serenity and spiritual life, I just can't and won't do all the things he speaks of .. not to mention I cannot afford most. I feel like I've done the most imperative. Do you guys know what I mean?..how much is just too much??

Yes. I do know what you mean. It's been a year since I was diagnosed with CIRS from mold exposure. It turned my life upside down. The doctor who diagnosed me didn't know what to do with me since I couldn't tolerate cholestyramine. I kept pressing for answers. I had Labcorp Western blot for Lyme and only had 2 positives, so it was negative. I knew nothing about the inadequacy of the test and the doctor didn't tell me. I did know that Shoemaker said that only people with Lyme or MARCONS would have horribly worsened symptoms from the cholestyramine. My MARCONS test was negative and I knew that the mold diagnosis just did not match my history and did not make sense to me, so I pushed for more Lyme testing. I had Igenex next and still didn't have enough positive bands to get a positive result. That time though, the doctor had the decency to tell me it could still be positive. I did the DNA Cinnexions PCR urine test then and it came back positive for Lyme and ehrlichia.

If I had just listened to the doctor and never educated myself, I still wouldn't know what was wrong with me.

I hope you got the HLA-DR test done. If you're mold susceptible only, then just focus on mold avoidance. But if you're Lyme or multi susceptible, you might want to get more Lyme tests done.

Shoemaker says VIP nasal spray can turn off the HLA-DR gene activation, but you have to be out of mold to use it. Stephen Buhner says in the Healing Lyme 2nd edition that cat's claw can decrease HLA-DR gene expression (p. 265).

I wish you well.

Post Edited (WalkingbyFaith) : 10/14/2017 9:06:57 AM (GMT-6)