CBC Dropping in Multiple Areas

Have been at hospital for heart testing for three days now.

Much of CBC has been low for a long time, but is dropping quickly. Not just one area.

Two days ago:

WBC,2.5
RBC 3.35
Hemo-11.5
Hemat-33.4
Platelets - 160

Today (7/1123)
WBC- 2.2
RBC 3.19
Hemo-10.7
Hemat-30.7
Platelets - 129
MCH and MCH also high both tests.

Concerned over drop and months of continuous low numbers. Have autoimmune also, but with that autoimmune is thought of developing cancer. Probably crazy thought, but the cbc is concerning.

Haven’t hardly been treating Lyme or co infections and haven’t had IVIG to impact tests in more than a month.

Any experience or thoughts are appreciated.

I agree with garzie, the difference in the last 2 tests is very small,within the normal standard deviation from day to day in these tests.

I would also say that IVIG drops your WBC significantly. I know that you havent had it in a month, but the half life is 35 days, so its still having some effect.

My WBC drops from a 3.5-4 area normally down to a 2-2.5 on IVIG. It's shown that this drop is not harmful in practice and likely just an issue with how IVIG affects the test result.

Good Luck RW

good to hear Lyme is not dismissed by the hospital

obviously going to be a bit tricky to navigate treatment - given all that you have going on

i wonder if there is anyone out there than is knowledgeable about lyme treatment with co-morbidities that could help you navigate it.

"slowly, slowly catchy monkey" is one option

maybe bicillin and something else

or perhaps a pulsed regime is easier on the kidneys

or another option might be to try and get to see ne of the well known lyme docs - i have been watching some of Dr J's youtube vids - and he comes over as one of the smartest to me - and is well used to working with other patients other specialists - just a thought if money is not a major obstacle

i hear you

i think bicillin is a good start as its known to be one of the gentler treatments for most and therefore less likely to flare inflammation - which in turn might be expected to flare the autoimmunity

that will be the challenge i think - treating enough to be effective - without flaring inflammation and that causing instability of AI issues -

be good if you could get some help with that aspect from someone who is experienced with it

herbs sound gentler than abx in this regard - but in my experience they are not really - seem to drive plenty of inflammation and herx - the supportive ones like buhners mainly anti-inflammatory and immune modulating ones much less so in my experience - so they are an option - and i think have helped me get to a place where i could make progress with other treatments - ie by getting the immune system working a bit better

just passing on anything i think might be of help

autoimmune and sjorgrens point to intercellular infections . low circulation to extremities also points to the claudation that bartonella creates. mycoplasma and bart are both known to affect bone marrow production and wbc count. my thrombocytopenia resolved with treatment. your numbers are borderline. does it take a while for wounds to stop bleeding or heal?

Rw : please , please dont let them give you immunosuppressants ! most are derived from chemotherapy and will obliterate whats left of your immune sx .... + the known infections will be free to have a hayday ....

Post Edited (bluelyme) : 7/12/2023 2:56:07 PM (GMT-8)

Bluelyme - My goal is to do all possible to treat infections to see if it makes any difference. Last thing I want to do is suppress immune system with medications.

At the same time, if it is Sjogrens causing most of my symptoms, I don’t want to let it keep damaging nerves that won’t come back. It’s a catch-22 situation right now - damned if you do, damned if you don’t. The do or don’t part is convoluted.

Garzie - I see your point. The question is “Who do you go to that is adept at a possible infection-autoimmune mix?

After having so many tests for heart and other possible problems in hospital, the dizzy episodes and exercise intolerance has to come down to infections, autoimmune or infections making autoimmune worse.

And with the neuropathy, seemingly, getting worse, time plays a role. Add in a possible heart surgery in next year or two, and the immune system looms even bigger. I don’t know.

Hey, running wild:

Though I have no personal experience with any of them, I did some Googling and the following doctors have mentioned ["Lyme"] AND ["Immune" and/or "Autoimmune"].

Some offer telephone consults, either as:

1.) a screening tool, to see if there's a good fit with doctor and patient
2.) a fee-based session to receive advice from the doctor

So, I wondered if this might be a potential way for you to find some doctors that might know about Lyme and Autoimmune and either give you some direct guidance or give you some new ideas to bring to your current healthcare team? I've no idea of the cost of a phone consult, but it's surely less than going for an in-person office visit and becoming a patient. (And, don't call me Shirley.)

Doctor Search Engine for Infectious Diseases, Rheumatology, and Lyme
https://tinyurl.com/4y4d9cka

Jemsek Specialty Clinic - Washington, DC (already mentioned by Garzie)
https://www.jemsekspecialty.com/contact-us

Richard I. Horowitz, MD - New York
https://tinyurl.com/ztz2xnuh
https://cangetbetter.com

Elena Frid, MD - New York
https://tinyurl.com/2y3vtbep
https://www.ledamedical.com

Andrea Gaito, MD - New Jersey
https://www.andreagaitomd.com

John Aucott, MD - Maryland
https://www.hopkinsrheumatology.org/our-team/bio/john-aucott

Brian Fallon, MD - New York
https://tinyurl.com/ybpuunra
https://www.columbiapsychiatry.org/profile/brian-fallon-md

Tom Moorcroft, DO - Connecticut
https://tinyurl.com/3788krue
https://rb.gy/gryuc

Stephen Phillips, MD - Connecticut
https://tinyurl.com/56z5v5ff
https://stevenphillipsmd.com

Not all these are likely to be an good match. Plus, some folks on the forum have made negative comments about Stephen Phillips. So, if someone isn't a good fit, you could always ask them if they know of any other doctors who know about Lyme and Rheumatology/Immunology.

I'm really sorry you're going through such a protracted, difficult time with so many things to consider. All that on top of trying to live life, work, take care of all the daily activities (shopping, cooking, cleaning), and so much more. I really hope you're able to find a way through this and get the proper help you need and deserve.

If there's anything you think I can help with, don't hesitate to e-mail me directly.

Best wishes,
Dude
_

Post Edited (The Dude Abides) : 7/13/2023 10:55:24 PM (GMT-8)

I used to freak out about my low, but still normal white blood cell count. The more I tested the more I seen that it has a certain range that it fluctuates in.

Seems like Lyme and autoimmune beat it down to a certain level, which it never recovered from. In my case it’s low because two of my my immunoglobulins are below normal. But they’ve also been like that for six years now …..doesn’t really seem to change much, so I’m not that worried about it anymore.

And even if there is no lyme involved, you can Google the fact that auto immune and low immune cells eventually are kind of common together. So there is a connection.

Garzie said...
^^^ incredibly helpful and generous with your time ^^^

Nicely done Dude!! 👍

I second that, some awesome research there. Dude, the data dude!