Does anyone wonder if they could have something else?

Quick rundown of my issues to understand things. I became ill in October of 2014 after a weekend of being ill. My worst symptoms are: Brain fog(as you probably all know causes all sorts of issues), fatigue, joint pain, light sensitivity(although much better than a few years back), depersonalization, unsympathetic, anger.
I was tested for which seems like almost everything from October 2014 until my diagnoses of Lyme through igenex in September of 2016. I've been pulsing abx since january and i think i have gotten a little better since(it's just so hard to tell sometimes though) Also i recently got my C4a and HTG Beta 1 back and both were 4x what they should be. At this time i'm still waiting on my HLA test

When i look at what i wrote all signs seem to point to Lyme, mold, or both. For whatever reason though I keep second guessing things. Going and seeing an infectious disease dr or some other specialist and showing them all these tests i had and ask if not Lyme, What is wrong with me? I've heard a lot of horror stories about doing this but I just feel so hopeless. I'm grasping at anything that may give me answers and a way out of this torturous hell. How bad of an idea is this to go see if they forgot a test or have any kind of answers for me? What kind of dr would i see? thanks all for listening to my story and rant.

Hi Joe -

First, it might be helpful to share everything else you're doing in your treatment for both Lyme and mold. That might help us troubleshoot what it is you are doing, and areas you might be able to kick it up a notch or two.

I would also try taking this symptom questionnaire - Lyme often doesn't come by itself and people can achieve better success by treating holistically for other coinfections.

Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

And of course, it also helps to just get more treatment under your belt. It seems like 6 months of abx should reveal significant progress (and it probably should) but Lyme & Co just doesn't play by those rules. It can often take a lot longer to fully address the infection load(s) and address the impact of treatment itself, repair and heal damaged or challenged body systems and return the body to a healthy state.

Last, abx can be brutal on the GI for some people - and remember the gut-brain connection (science finally proved what natural specialists have known for a long time - and found blood vessels connected between gut and brain). So the microbiome imbalance in the GI nearly always has a psychological component to it. And antimicrobials that we take orally do just that - and we can often develop the neurological-psychological or neuro-psycho sx as a result (brain fog, depersonalization, unsympathetic, anger, etc.)

Look for conversations here about gut health. Diet is key, probiotics, and particularly with a mold issue you definitely need to be on cholestyramine - PURE is best. I can share more info about that or you can find it on [rul]http://www.survivingmold.com

Fatigue is pretty darn normal for us - our bodies are fighting these infections and other invasions, our immune systems are overwhelmed, and the treatment itself is pretty hard on us. People think they can just move forward with business-as-usual with their busy schedules and working out... no. Give yourself a chance to heal so that you can get done w/ treatment faster.

And, a few of your sx also show up with yeast/fungal overgrowth, which is common w/ oral abx so that is something to look into as well. Here is more info:

Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

Hope that's helpful - if not, just keep asking questions!

-p

Thank you all for your response.

Traveler-yeah, i keep seeing a false positive is very unlikely and on my igenex test i was negative CDC and positive Western Blot. I know most don't test positive CDC results, so it's still considered a positive test.

Pirouette- right now i'm taking a bunch of different vitamins: vit C, D, E, 3 probiotics daily, digestive enzymes, fish oil, mangesium, colloidal silver, alpah lipoic acid, coq10, active lipoic acid, DHEA, GABA, L cartine, b12, NAC, potassium, chlorella, curcumin, Iron, Acetyl Carnitine.

As for my current antibiotic schedule: week 1 lactoferrin 500mg and xylitol 1 tsp daily, then antibiotcs Monday, Wednesday Friday in the morning and evening I'm taking 2 cefdinir 300mg,1 bactrim DS, 2 Malarone 250/100mg, artemisinin 750 mg. Then on Thurdday and Friday i'm taking Flagyl 500 mg and diflucan 200mg

week 2: is the same except i take out bactrim and replace it with 1 500 mg cipro, and i don't do the flagyl or difulcan.

week 3: coartem 4 twice daily Monday-Wednesday

Week 4: off

I then repeat this cycle for a total of 4 cycles. This is called the babesia biofilms part B. This is a Jemsek protocol.

As for not feeling better, I think i am feeling better than i led on in my initial post. It's just such a slow process and every couple hours things seem to change on the way i feel, so it's very difficult to gage things.

julymorning- Yes, I've looekd over the symptoms chart and mostly everything matchces up with me. I think what was really strange for me during this process is i never got worse from the first month of being sick. It was always just a very steady up and down feeling of how i was doing. I never progressed or got worse over time, so that's one reason i've questioned it. Another reason i question it and it may sound stupid, A month after gettign sick i went skiiing in the mountains of colorado. I was very nervous to do so as i didn't think i would be able to get down the mountains with how i felt. Craziest thing is when i got on top of the mountain my symptoms vanished. Maybe it was a coincidence as i have had vanishing symptoms from time to time. This however led me down a path of looking into allergies and other things related to why i may have felt so good on top of the mountain that day. Nothing ever came of it, but it's made me wonder for a couple years now. As for my heart, brain and organs, i had all those tests a few years back and everthing came back normal.

Thanks again for your replies

I don't actuallly see Dr J. He trained an LLMD to mirror is protocol to the T. I have mentioned it to her and that's why we are looking at mold. I think for whatever reason I just still dont want to believe it and desperately searching for some bettter illness as crazy as that sounds haha.

Symptoms disappearing when someone goes to higher elevations is not as unusual as many may think. I know I've read of it several times before from others that have these infections.

The lower oxygen has something to do with it.

I'm so glad you found your way through all of that, Randy! So many have false diagnoses and never think twice about it, even if they don't meet the criteria for having the condition.

One of the 33 doctors i saw said it must be disseminated cytomegalovirus and i must have aids or the like .another said wait for als obviously i had a motor nueron disease and mitochondrial dysfunction. Though they may have been right and wrong the cause is bart and lyme .without hiv research we wouldnt know about bartonella .and everyone has simian viruses from vaccines .

when i started researching prions and the little skin worms on eyelidseverone has and giardia and heminith creatures .i stopped .
jinna sent me the sweetest email saying we used to live with these bugs in harmony and dont waste energy thinking about the millions of bugs on you ..staph on your skin fungus and yeast in your gut strep in your throat .lyme is immunosuppressive and then they necome a problem .when i tested positive for 9 pathogens not counting viruses .i just stopped ..and surrendered ..not the fight but in acceptance that this is what it means to be a hairless human monkey .suffering for the creators glory( earikson) (frankyl) ...

Hit them one by one hard ,trust .try means like bvt rife if you can ,st jons and lomatium .keep plugging away say que sera imo