Not Sure What is Happening, really Need Help

The subject was not meant to be dramatic - just "there." This is as complicated as things have been in a long, long time, not to mention overwhelming.

Recently, I have been so exhausted it is hard to get through even half a day. Stomach hurts badly after eating.

Received blood tests from yesterday, and my white blood cells are at 7, but they have not been beyond 3. for many years. Neutrophils are at 82%. Way too high. That is up from years of 27-28. Absolute lymphs are low, another first. Red blood, hematocrit and hemo all just barely low, as usual. Sodium low (130), chloride low, which can follow low sodium. Carbon dioxide 6 points lower (28).

Creatinine higher than it's been in a quite a while. All this on one test tells me something is happening. Something has to be going on as there are too many reliable tests off. I've been dizzy, and that was made even worse after sitting next to a speaker at my son's wedding. Doctor thinks it's inner ear damage as what he could see was fine. But my balance and dizziness have been worse for a while now. I chalked it up to Sjogrens getting worse, but I've read autoimmune causes low neutrophils and white blood counts.

Does this sound like Lyme and others have broken through? The only thing I have taken different is a very low dose of LDN each day (less than 1 mg), and I had a shot of lidocaine and small amount of cortisone in my temples and above each eye two days ago to see if inner ear was actually a migraine.

Doctor wants me to start Beyond Balance herbs and detox I now have, but with kidney numbers worse, not sure what to do. Also want to re-start ARA-290 peptide, but kidneys again are a question. I haven't been to this point in 11 years and have no idea what to do. Reading and even typing this makes me feel like I'm going to throw up, but I haven't.

Any ideas are appreciated, and I'm sorry this is so long. Simply looking for possible solutions or ideas. Thanks.

Whites are in range but have doubled from years of 3. Neutrophils you can see they have tripled. Has to be more than a coincidence.

Anything I eat causes some pain and stomach, overall, feels bad. Haven’t had the off balance, sick feel when eyes move for many years.

I appreciate your asking.

I had many blood tests showing high neutrophils (around 80%) when I would get a herxheimer reaction. It eventually went away.

I hesitate to post this, because I definitely don’t want to cause panic, but I came across this when searching for what might cause high neutrophils with low lymphocytes and stomach pain. https://www.mayoclinic.org/diseases-conditions/lymphoma/symptoms-causes/syc-20352638

Didn’t you say one of your doctors tested you before for cancer? How long ago was that?

maybe its gram neg overgrowth abd candida causing ammonia buildup? biotoxin binder uses yucca and fulvic to clear excess

i have also had a sudden spike in neutrophils during a strong herx from things that i didn't expect to cause a herx

was highest ever readings by some margin and i felt absolutely awful at the time - was the day after the worst point that i had the blood draw - i had been basically curled up in bed waiting for it to subside and wondering if i would need to call an ambulance

i wonder if something has triggered this type of reaction - even if you were not expecting a herx from it - in my case it was from herbs that were largely meant to act in the gut and be more supportive than direct antimicrobial - so i was surprised at the strength of my reaction - taught me the gut is intrinsically involved in the symptoms we experience.

the LDN can do strange stuff - as mentioned - even at tiny doses - its very individual dependent - some get no effects at all from it good or bad that they can detect - in others the tiniest amount can do wild things - and in people with auto-immune issues and general sensitised systems it can be extreme - i think dcd had this kind of experience

overall, at a high level type view, from your posts, it sounds like you have been trying a lot of things lately in a short space of time - which i get - we all want to find things that help us move forward
if it were me i would stop all interventions - except perhaps those you have been taking / doing for years and feel comfortable with - and wait for things to calm down before trying anything else.

this illness does seem to be like that - when you are in a flare it feels like everything is out of control and that the flare might last forever - unless you do something - take something else - but in reality most of the time things settle back down to baseline if you give it time and just do the sensible basics - sleep, diet, stress management, good routine etc

whereas if you keep adding one thing on top of another without figuring out what does what you can end up chasing your tail

i know its not an ideal answer - but this is what i have found through my own many trials and tribulations - and so is the best advice i can pass on

its all peaks and troughs - feels awful when you are in the troughs - but its temporary

hang in there RW !!

Post Edited (Garzie) : 7/23/2022 6:25:04 AM (GMT-7)

Thanks for all thoughts and ideas.
Last few nights a peed, at least, 12 times a night, which would answer low sodium. Been there a few times in past with that.

I read where drop in carbon dioxide can be caused by “cortisone or antacid,” both of which I recently have taken or had ((though small amount of cortisone but day before test).

Not sure Rainy, but it seems the link you placed about naltrexone was for higher doses, instead of low dose naltrexone. That could explain your question about dosage.

WBF’s link about high neutrophils, low lymphs was interesting so I looked into it. Seems a Sjogrens flare can cause just that. Having negative blood tests for Sjogrens, negative RA and no swollen lymph nodes minimizes lymphoma chance. I do have other risk factors, but those are major ones.

It could involve candida, but also Sjogrens is known to cause stomach issues.

Finally, there are features of autonomic nervous system dysfunction. That could explain gut. Don’t have sweating problems or inability to change heart rate with exercise or exercise intolerance, but have enough to think it’s in play, along with peripheral neuropathy.

There’s still the 8:00 am anxiety surge that wakes me up, making me wonder if Bart could still be there.

Concern is calming this down and stopping progression because of cancer concerns.

Dcd - absolute lymph count is 0.6. (0.7 is low normal) Absolute neutrophils 5.8 (7 is high normal).

Margarita - Which therapies are you referring to? That way I can answer better.

I wasted a trip to Mayo when first diagnosed with Lyme years ago.

My lymphs have never been much better than low normal, but the neutrophils so high is new. That’s what made what WBF linked interesting.

Having Sjogrens and so many new symptoms, then the high NLR, makes me lean toward it being a bad Sjogrens flare, especially after the stress of a wedding, eating not so well for two days. Yet, I don’t know if Lyme is pushing the Sjogrens. That’s what doctor wants to find out, but right now I have to calm autonomic system down first.

running wild,
I think that dcd2103 and Garzie nailed it in their responses and the only thing not addressed yet is whether or not you've stayed on binders. Detox is a must, for life. You said that you're 'not treating' and yet LDN is a treatment and is both stimulating your immune system and likely causing die off. A dose of <1mg daily may be too high for a sensitive constitution and without binders, it's pure misery for some.
I tend to follow Dr K and he advises that in a herx, one should not stop treatment altogether, because of the rapid recycling of all but Lyme (cycles every 28 hrs) but to drop down to 1/10 of current dose until things calm down and then increase back up to prior comfort zone and stay there until stable enough to push harder or to switch things up due to the ever-evolving symptomology.
LDN seems to be a mixed bag for many and it may not be the right treatment for you. We mere humans are up against these wily organisms, some of whom have been around for millions of years; we have such a maze to work our way through and have to keep track of what works and what doesn't.
I feel your pain with the all too common dizziness as I've experienced that array of Sx so severely that I was Dx'd with Meniere's Disease - caused by or exacerbated by Lyme and cos. - and am still treated for the sequelae of Sx, also had surgery for it.
We can suffer such a wide range of symptoms with these microbes that we can search and scramble for years to find what works. Have you considered vagal nerve dysfunction and/or adrenal tanking as part of your complex? Are you stable on good minerals like Fulvic/Humic (we use CellCore); they can be stripped by using clay and charcoal binders and need to be replaced. Probiotics? I've found DesBio spore-based to be the best and curative in and of themselves.
After decades of living with Lyme and cos, I wasn't truly taken down until nearing my 60s and now at 65, I'm again using a limited number of herbs in a lipo form to treat BB, Bart, Bab, EBV, and the array of retro viruses that are part of this infection complex. I've found that a fairly clean and varied diet (not exclusionary, I don't test as sensitive) solid multivitas, zinc, and a few others, along with solid mineral balance and a few select herbs (many that I harvest and tincture) as a tea and others in a home-made tincture, lipo form are all that my family and I need to keep the infections from hampering our health and vitality. I was previously bed-bound for a couple years and after chasing my tail with too many herbs and suppls, have found that using a select few is best for me. I also treat for paras, do liver supports, treat with Biocidin for Candida and molds, do periodic GB/liver flushes, and keep binders on board. My go-to is chlorella in does of 3-7 grams, 1-3 xs daily. I also use red root tinc for lymph support, it aids the lymph in clearing cellular debris. And I promote glial lymphatic flow for brain detox; much is found to aid this in Ayurvedic Medicine. I also keep a few key Homeopathics around for use in crises.
One OTC med you can use to calm the inner ear is Meclizine (the drug in non-drowsy Dramamine); you can buy or order in 12.5 mg, 100 tab bottles from any pharm for about 15 US. Does cause drowsiness, but I've used up 50 mg 2-3 xs daily for N/V, dizziness, tinnitus. Go slow when starting.
I hope you find your balance and your path to healing.

Post Edited (Luta2022) : 8/9/2022 6:04:20 PM (GMT-7)