Ataxia - Chronic / Lyme Not Diagnosed and Untreated

Hello All,

I posted here in 2015 under the username Firefly20. I can no longer access that. I am not doing well.

As of Jan 2018, I had an episode of (out of no where) crashing/falling to the ground. I was exhausted after a close members family death, walking out of the said family members estate after cleaning it out, and had an episode of my heart racing faster as I was falling... and landing on all fours and not knowing which was way up or down. I was barely able to crawl to the door to get my husbands attention outside. I was unable to form sentences and could only get a few words out. I woke up the next morning extremely dizzy and never felt the same again.

Flash forward a year and a few months later. After many doctors and tests (Cardio/MRI's, bloodwork, etc.) I changed Neurologists and have been diagnosed with Ataxia. She said that it may be caused from Autoimmune or Cancer. I have a history of Hashimoto's, thyroid cancer, etc. I started dealing with severe flares (both neuro and rheum related) in 2015. Although, had joint swelling, etc prior. I had severe digestion issues starting in 2012 (lost 60 pounds without wanting to, could not tolerate food, went gf and got getter). Had speech issues intermittently and of course swelling/joint issues/flares, severe fatigue, facial pain, brain fog, migraines and episcleritis. I'm sure there's more, but cannot remember. I have a blood test verified allergy to Mold. Lyme (Western Blot) was negative in 2015. Possible bullseye rash, not sure when, but cannot say 100%. Have not seen an LLMD, nor do I have the cash since I'm not working.

The Ataxia has now robbed me of life... independence and freedom. I cannot drive, I cannot be alone out and hard to function at home most days. Can barely get around a store. Using a walker at times. It's very depressing. Also, I am part of this huge thyroid medication problem (Natural T3, porcine dissected hormone) that is always on backorder and definitely has been reformulated. I started not feeling well immediately after the reformulation. And, 6 weeks later, is when the crash happened.

Neurologist wants to do a possible lumbar puncture, cancer scan and pelvic u/s.

I read about the detox baths, and now I know why I have not liked Epsom Salts. They must have made me herx. I cannot tolerate any antibiotics (severe shortness of breath/heart racing) or steroids.

I want to start the detox baths, what do you do for herx related symptoms?
Anyone else with Ataxia?
Starting to go sugar free, as well.
I feel like everything negatively effects me... food, medication, skin products. UGH! This is NO WAY TO LIVE!

My thoughts and heart to go out all of you.

Thank you, Girlie! I think the foot baths is a good start.Thank you for the advice!!!

I forgot to mention that I have anemia, too. Despite eating iron rich foods. Anyone else?

Hi, Firefly,

So sorry to hear you've had such a hard year. You're right, this is no way to live! The episode you describe from January 2018 sounds so scary for you. Many of us have been in pretty dire places, too, and we are here for you now. I have to use a wheelchair for any distances longer than a few yards and have to wear a mask in public to guard against germs, and I did feel demoralized by this at first, but I try to remember that I deserve to be safe and supported while I figure out what I need and while I heal. So in the store with your walker, please know that we're rooting for you!

I agree that if you have reacted to Epsom salt baths before, then it's probably best to start slow and to keep the water warm (and not hot). Hot baths can cause strong reactions in people with mast cell activation issues. Do you know if mast cell activation syndrome is something that is going on for you? (Poke around online - regular docs aren't going to know much about this.) Folks with MCAS seem to have a lot of the symptoms you describe, like serious herxes and reacting to everything they ingest or encounter. Some things that help (and are cheap!) are quercetin supplements, turmeric, and Alka-Seltzer Gold.

Mold seems like a pretty likely candidate to cause your symptoms. I wouldn't rule out Lyme, but from your description - literally walking out of a house after cleaning it out - mold seems like a serious likelihood. Lots of folks on this forum have described relapsing or having a major episode of illness after cleaning out or living in a moldy space. Much (probably most) mold is behind walls, under floor boards, in vents, and in basements - places you would not necessarily see or know about it. Research the work of Dr. Shoemaker and the website survivingmold.com. There are more lab tests that can be run to find out various inflammation levels, probably best to do with a doctor of functional medicine, as most western doctors will only know about traditional mold allergy symptoms, and not the results on ongoing mold toxicity (of which ataxia is a very common symptom). With mold, once you are sensitized to it, you basically have to remediate in a massive way or move. Sometimes people move out of their houses for a few weeks to see if there's an improvement. There's also the simple computer-based VCS test. Once you stop the exposure, then there are a lot of treatments that help and in most cases can reverse even serious neurological effects.

Sometimes MCAS and mold sensitivity are secondary to Lyme or other underlying infections, many of which are touch to test for, and the tests can be unreliable. Some docs with Lyme and/or mold experience take insurance, though not many. If you are looking for resources or treatment guides written by relevant doctors so you can self-treat, then I'm sure a post on healingwell would get you many good links! I like the Bill Rawls website rawlsmd.com, and I see the Marty Ross site referenced a lot https://www.treatlyme.net/lyme-disease-treatment-guidelines Everyone responds to different things, but the Buhner protocol (herbal medicine) might be the least expensive option for well-regarded, effective treatment.

Keep posting, and I hope you find some answers soon!

Girlie said...
What showed up on your blood test? Was you rbc count low? Or ferritin level?

I’ve had ferritin levels in the “insufficient “ range for a few years now - but my rbc is good.

I have tested a few times over the years and it’s stable where it is - so I’m not supplementing.
I did take an iron supplement a couple years ago for a month or so.

I wonder if it’s babesia that caused it... I’ve read that infection “smashes” red blood cells.

I should retest and see how it is after my extensive Babesia treatment.

Hi Girlie,

Here's my most recent levels:
FERRITIN - External 8 ng/mL 10 - 232 ng/mL
IRON, TOTAL - External 36 mcg/dL 40 - 190 mcg/
RED BLOOD CELL COUNT - External 5.07 Million/uL 3.80 - 5.10 Million/uL
HEMOGLOBIN - External 12.1 g/dL 11.7 - 15.5 g/dL
MCV - External 73.8 fL 80.0 - 100.0 fL
MCH - External 23.9 pg 27.0 - 33.0 pg
MCHC - External 32.4 g/dL 32.0 - 36.0 g/dL
RDW - External 15.5 % 11.0 - 15.0 %

Saraeli & WalkingByFaith!!!

Through all of your suggestions, especially Dr. Shoemaker's, I believe.... I found a Functional Neurologist/Functional Medicine doctor in my area!!! They deal with Mold Illness! I just messaged them to see if they accept insurance, as it seems they are a full-on Neurology center. Omg, I COULD JUST SQUEEZE YOU BOTH! I am going to follow-up with my current Neuro and probably get in to see the functional docs too for their thoughts on my symptoms (hoping they accept insurance). Either way, you both have given me some hope which is HUGE. You need hope when you are feeling like this and I could JUST CRY in some relief. I feel that I have some direction now, and hope to receive the accurate testing, their opinions and hopefully some treatment. Can I just say that I love you both?!

bluelyme said...
your iron levels and cell width indicate you may have a intercellular pathogen causing your anemia! keep digging i found out the root to my ataxia by looking at my blood under a simple microscope

Hi bluelyme,

Do you mean by a parasite/lyme? I'm really not familiar with everything involved in this. That could explain of why when I take iron (even Flintstones), I have severe head rushes and extreme anxiety/heart racing. Other multivitamins are fine with me. Any recommendations?Thank you for your response!

Post Edited (Firefly8) : 3/6/2019 2:41:39 PM (GMT-7)

yes saraeli is correct. babesia is easy to confirm with a giemsa stain. see microscope thread. babesia fl1953 or some malarial type of parasite may be at play. after i found 9 pathogens i stopped looking and focused on grtting load down. start in the gut biggest to smallest as some hide inside others like a russian nesting dolls. rbc can renew every 120days babesia treatment need to be at least that long to eradicate

saraeli said...
Even your current neurologist seems like someone who tries her best, which certainly matters and is not universal. Having a functional medicine doc that you like would be great, too.

My current neurologist seems very good, thus far. I see her again in four weeks. I'm hoping she will be on board for looking deeper into possible Lyme/Mold issues, along with cancer/possible genetic. She's absolutely correct, my autoimmune system is in over-drive and we need to figure out why. So glad that I met a doctor that is not prescribing me steroids and sending me on my way.

I react strongly to things I ingest, too. One drop of holy basil and I didn't sleep for 36 hours. One drop of eleuthero and I slept for 24 hours. Doctors definitely find me inconvenient at best. My PCP tells me I'm being dramatic.

I'm so sorry that you endure this horrible reaction to things, as well. It's so difficult to deal with. It's such a trial and error process that sometimes leaves you with huge regrets when you have a bad reaction. You are not being dramatic (which you already know). How would they like to feel this way?! I commend you for your strength to keep trying. It's definitely not easy. You're a health warrior!

I'm sure mold and CIRS are part of my mix, too. Depending on where you land in terms of diagnoses and things for which you want to treat first, maybe consider some treatments that don't involve ingesting things - sauna, rife, AmpCoil, acupuncture, etc. You'll herx from those things still, but at least you won't be fighting side effects at the same time.

Thank you for the suggestions. I considered finding a med spa that has the infrared sauna. But, I'm very nervous of how I would react. And again, I'm so deeply sorry that you are on this journey, as well.

Did you try the online VCS test yet? Just curious. I hope that your cancer screenings go smoothly and swiftly fall off your radar.

I'm going to do that soon! Thank you.

Babesia sometimes hangs out in blood cells and destroys them, causing anemia. That might be what bluelyme meant? I'm very curious about self-diagnosing with a microscope. I have lots of gadgets for monitoring myself - pulse oximeter, BP cuff, portable EKG, urinalysis test strips - but no microscope yet.

I just scheduled an appointment with a hematologist. I'm also hoping that she will be open to "looking deeper" into the culprit causing my anemia. Considering all of my symptoms and my current ataxia. I'm struggling and I pray that she feels the need to go "above and beyond." She is nearby my house and I guess it won't hurt to try. I have a good feeling about her, as well, after reading her bio and watching her videos. Especially since it's covered under insurance. Fingers crossed. Oh, and I contacted the functional neurologist. I missed his call back, however, I did find out that the blood work is covered under insurance.... but you will have to sign a contract afterwards and pay cash. Sigh. We'll see.

Hugs to you.

Huge hugs back to you. Thank you so much, you've been beyond helpful.
I included my answers in the quoted part of the post.

bluelyme,

You sound extremely advanced and so knowledgable (like everyone else on this topic!). I am beyond impressed that you are able to look at your blood under a microscope. I think I'm going to pass on what you said in your post to my doctor(s).

Have any of you tried Plaquenil? It's an anti-malerial medication, which I'm sure you guys are aware of.

Dysautonomias, yes. My central nervous system gets confused! I have POTS and gastroparesis that wax and wane along with other factors - histamine in my diet, low barometric pressure, stress and exertion, herxing, toxins in general, and possibly also the infections themselves setting up camp in my nervous system. These conditions are not well understood, and most doctors (even very good gastroenterologists, cardiologists, and neurologists) won't know a thing about them that you can't learn from the Wikipedia page. If you are lucky enough to find a local doc who specializes in a form of dysautonomia, then the waiting list is probably extensive, and they probably will have no idea about the interplay of chronic infections and toxicity. And on top of that, the meds they prescribe - though helpful for some people - have a very mixed track record, and of course are not a good option for people who react strongly to drugs.

So! What have I found helpful? Doing recumbent exercise and movement, to maintain strength and circulation of blood and lymph. Drinking three liters of water per day. A low-histamine diet. Tapping (EFT) and breath work and meditation to re-train and sooth the nervous system. The mind-body app Curable. Eating extra Himalayan salt. Burbur-pinella. Detox stuff, even though it can make things worse in the short term. The valsalva maneuver (basically holding your nose and blowing out, like you're popping your ears) used sparingly to interrupt a runaway pulse. Squatting down for a minute if I'm feeling faint and too far from a lounge-worthy surface. Using a wheelchair in public places that offer them, and not going places that don't. Keeping my body temperature consistent. For gastroparesis specifically (not sure if this is of interest) I'm not sure how much these really help, but I take digestive enzymes, digestive bitters, ginger extract, days of smoothies when I can't handle solids, vitamin C and anything else to keep things mobile intestinally, massaging my abdomen in a clockwise direction to encourage digestion, making sure to sit upright after eating at least for a bit.

I want to try some YouTube videos that show tongue exercises to re-train the nervous system. Can't hurt. And also Annie Hopper's Dynamic Neural Re-Training System; I hear good things about this, and keep meaning to ask about it on this forum. Neil Nathan's book Toxic even describes someone who used it to move past CIRS enough to use regular treatments for mold and infections. A little expensive but maybe worth it.

Good luck!

Firefly, yes, hormones! I knew there was something I was forgetting. POTS for me tends to be worst the week after menstruation. I don't know if that is related to hormones, blood volume, or a combination, but that is another factor for me. Still teasing out all the whys.... And of course hoping that continued treatment will eliminate symptoms over time.

And you are too kind. I try to be helpful, but of course who knows what actually will make the difference for someone? You're right that so many of us have to become our own experts and our own advocates about these illnesses. Thanks for the rollator tip! A nice hybrid mobility option.