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What are everyone’s thoughts, help appreciated!

Posted by ymaddox1970 @ymaddox1970, Mar 7 8:30am

I had EBV in early to mid 2000’s, the second time I had it I had Rocky Mountain spotted fever with it, Lots of unexplained symptoms from then to early 2020’s and reactivated with Covid, I am sure I reactivated prior just could not put a name or reason to it because was unfamiliar with EBV. Just thought EBV was a virus you got once and it was gone, that’s what we are taught. During this time I just kept staying sick to the point I had to give up a 30 yr nursing career because I started having severe anxiety and panic, I was also diagnosed with chronic fatigue, and IBS, and vestibular issues as well. I consistently belch and / or I am gassy and have diarrhea to point I’ve had accidents in public. The amount of tired I am is unexplainable and I as a general rule am laying down. Prior to this I had an active nursing career, active family life, I was an active gardener and enjoyed canning, we also camped, I enjoy houseplants, and keeping fish as well as family pets. I say all that to say I was extremely active and have gone from that to not being able to even do housework. As of recent I was also diagnosed with alpha gal syndrome and dairy and sesame seed allergies. It seems to just keep getting worse. If I eat I will start feeling bad for 30-45 minutes as a general rule. It’s just many things going on at once. My Igg and Igm on my ebv panel are always elevated, never went back to normal but the doctor says because PCR is not elevated he don’t think it’s chronic mono and also because Ana is not elevated he ruled out other autoimmune issues. My dads family was large, like 12 kids and their kids (my generation) and our kids seem to be rampant with autoimmune: MS, Lupus, RA, POTS, Fibromyalgia. So there is a strong history there, but let me just say the amount of gaslighting in western medicine regarding autoimmune issues is disheartening! I had a doctor (neurologist) suggest I get a book called, “What to do when they can’t find nothing”. I have been through it with doctors to the point I’ve just kind of given up! I don’t want that, I want to be better and in a better spirit and mindset. I’m just at a point I have no idea what to do or how to help myself; because I feel like it’s all on me to figure out! Any thoughts, help, or recommendations would be so very appreciated.

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swalex | @swalex | Mar 7 9:51am

@ymaddox1970 That is too much. Just another careless MD.
An MRI could potentially reveal brain inflammation. Would he at least be willing to review some references if you provided them? I hope so. There are plenty of reliable scientific papers available that discuss all of your symptoms.

Some findings:
Alpha-gal syndrome: https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608
or
https://www.vdh.virginia.gov/epidemiology/epidemiology/epidemiology-fact-sheets/alpha-gal-syndrome/
Rocky Mountain Spotted Fever: https://www.lymedisease.org/lyme-basics/co-infections/rickettsia/

Epstein-Barr Virus: https://my.clevelandclinic.org/health/diseases/23469-epstein-barr-virus

If you need more details, let me know.
Good luck.

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ymaddox1970 | @ymaddox1970 | Mar 7 11:50am

@swalex I had mri’s it shows lesions in the white matter, but not enough to be consistent with MS. Which they thought I might have at first. Had a repeat MRI and there were a few more lesions, but last mri showed nothing new. They actually said that the lesions was normal for age. Nothing more was said after that and I had to push to get that done.

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swalex | @swalex | Mar 7 12:47pm
In reply to @ymaddox1970 "@swalex I had mri’s it shows lesions in the white matter, but not enough to be..." + (show)
Profile picture for ymaddox1970 @ymaddox1970

@swalex I had mri’s it shows lesions in the white matter, but not enough to be consistent with MS. Which they thought I might have at first. Had a repeat MRI and there were a few more lesions, but last mri showed nothing new. They actually said that the lesions was normal for age. Nothing more was said after that and I had to push to get that done.

Jump to this post

@ymaddox1970
Hi
I was also diagnosed with missing white matter back in 2007. It doesn’t necessarily lead to MS, but depending on where it’s located in the brain, it can contribute to symptoms like muscle weakness. In my case, I also have Chiari malformation type I, and the areas with white-matter loss extend from the SMA to the cerebellum.

I’m not disabled, but I’ve gradually developed more difficulty with stairs and walking uphill or long distances. Because of this, I try to keep up with any credible neurological research and information.

Here are the latest if you like:
Consensus-Based Expert Recommendations for Diagnosis and Clinical Management of Vanishing White Matter
https://www.neurology.org/doi/10.1212/WNL.0000000000214320
And since I have elevated VLCFA, this paper gives additional insight.
Neurofilament light chain as a potential biomarker for monitoring neurodegeneration in X-linked adrenoleukodystrophy
https://www.nature.com/articles/s41467-021-22114-2

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covidstinks2023 | @covidstinks2023 | Mar 7 2:28pm

ymaddox1970: Bless you. I am so sorry you are dealing with so many things.

I too have Fibromyalgia/CFS....I had a severe case of Mono (Epstein Barr Virus) when I was in junior high. My understanding is it can reactivate. COVID really ramped all of my symptoms of these up. I have Long Covid. I have IBS as it goes along with Fibromyalgia as does osteoarthritis and Thyroid Disease. I believe FMS/CFS is autoimmune related and they are finally coming to that conclusion in the medical field research.

I recently went to a Fibromyalgia/Arthritis/Pain specialist as I cannot take any of the meds for Fibro. I have had Fibro for almost 31 years and it has worsened with age. This doctor prescribed a compounded pain cream (no opiods) that has taken the edge off the pain. It has worked better than Voltaren Gel for me. A Neurologist can also prescribe this pain cream to be compounded to your needs.

I am finding the majority of the doctors today do not have the time to spend with you as needed. Rheumatologists in my area will not see me because I have Medicare and the ones I have gotten referrals to will not see me because I have Fibromyalgia and they refer you back to your Primary Care Doctor.

Have you seen an Endocrinologist? Have you been to a Pain Clinic or Pain Doctor? Have you seen an Infectious Disease Doctor? I know. It's a lot. It has taken me years to find something I can tolerate that helps.

Sugar & Caffeine make Fibro worse for me. Heat packs and much rest help.

I question if you have Long Covid which exacerbates everything! Is there a Long COVID Recovery Clinic?

I am praying for you to get relief and answers. Blessings.....

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ymaddox1970 | @ymaddox1970 | Mar 7 3:02pm

@covidstinks2023 i have not been to pain management I refuse until I have to take; probably the nurse in me seeing too much over 30 years! my pain is more Arthritic at this point and I have severe plantar fasciitis I just live with it and if I walk much sit back down then get up to walk I walk like I’m 90 lol. I was not seen by infectious disease because at the time they only concentrated on Covid and at the time I seen doctor the Covid had come and gone, but yes probably lingering effects. My husband has talked about bringing me to Mayo Clinic for a more thorough evaluation but we don’t really know where to start. I would like to see functional medicine but can’t afford. I’m curious as well about some of the supplements they say help so much, if anyone knows about those please share your experiences. I’ve just kind of quit going to the doctor because I feel like I’m being gaslit most of the time, they know somethings wrong but they can’t put a name to it and /or fix it so they just dont want to talk about it. So I was finally at the point I’m like they will catch it when it gets bad enough and hopefully it’s not lupus or something that prolonging and treating could really hurt me. But then my grandson gets diagnosed at 3 with type 1 diabetes, then my daughter, granddaughter, and grandson get diagnosed with celiac. Then my daughter gets diagnosed with EBV, fibromyalgia, and they are thinking lupus as well. So now we starting on another generation of autoimmune issues and when it’s my kids and grandkids I want to figure it out! So between that and I’ve been getting more sick over time I’m kind of forced to reevaluate and push back on the gaslighting.

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ymaddox1970 | @ymaddox1970 | Mar 7 3:05pm
In reply to @swalex "@ymaddox1970 Hi I was also diagnosed with missing white matter back in 2007. It doesn’t necessarily..." + (show)
Profile picture for swalex @swalex

@ymaddox1970
Hi
I was also diagnosed with missing white matter back in 2007. It doesn’t necessarily lead to MS, but depending on where it’s located in the brain, it can contribute to symptoms like muscle weakness. In my case, I also have Chiari malformation type I, and the areas with white-matter loss extend from the SMA to the cerebellum.

I’m not disabled, but I’ve gradually developed more difficulty with stairs and walking uphill or long distances. Because of this, I try to keep up with any credible neurological research and information.

Here are the latest if you like:
Consensus-Based Expert Recommendations for Diagnosis and Clinical Management of Vanishing White Matter
https://www.neurology.org/doi/10.1212/WNL.0000000000214320
And since I have elevated VLCFA, this paper gives additional insight.
Neurofilament light chain as a potential biomarker for monitoring neurodegeneration in X-linked adrenoleukodystrophy
https://www.nature.com/articles/s41467-021-22114-2

Jump to this post

@swalex I know they was looking to see the number of lesions to see if I had MS. I have 3 first cousins with it. So sorry that so many of us are fighting these horrible things that can alter life so much!

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Profile picture for covidstinks2023
covidstinks2023 | @covidstinks2023 | Mar 7 5:01pm
In reply to @ymaddox1970 "@covidstinks2023 i have not been to pain management I refuse until I have to take; probably..." + (show)
Profile picture for ymaddox1970 @ymaddox1970

@covidstinks2023 i have not been to pain management I refuse until I have to take; probably the nurse in me seeing too much over 30 years! my pain is more Arthritic at this point and I have severe plantar fasciitis I just live with it and if I walk much sit back down then get up to walk I walk like I’m 90 lol. I was not seen by infectious disease because at the time they only concentrated on Covid and at the time I seen doctor the Covid had come and gone, but yes probably lingering effects. My husband has talked about bringing me to Mayo Clinic for a more thorough evaluation but we don’t really know where to start. I would like to see functional medicine but can’t afford. I’m curious as well about some of the supplements they say help so much, if anyone knows about those please share your experiences. I’ve just kind of quit going to the doctor because I feel like I’m being gaslit most of the time, they know somethings wrong but they can’t put a name to it and /or fix it so they just dont want to talk about it. So I was finally at the point I’m like they will catch it when it gets bad enough and hopefully it’s not lupus or something that prolonging and treating could really hurt me. But then my grandson gets diagnosed at 3 with type 1 diabetes, then my daughter, granddaughter, and grandson get diagnosed with celiac. Then my daughter gets diagnosed with EBV, fibromyalgia, and they are thinking lupus as well. So now we starting on another generation of autoimmune issues and when it’s my kids and grandkids I want to figure it out! So between that and I’ve been getting more sick over time I’m kind of forced to reevaluate and push back on the gaslighting.

Jump to this post

@ymaddox1970 Our stories are so similar, but, I can tell you have more on your plate.

I would try the Mayo Clinic as they have a lot to offer and may very well be able to help you.

I have been to an Integrative Medicine Doctor for Long Covid. It is not covered by insurance
and I reacted to every infusion and supplement he tried with me. He was a wonderful doctor.
I am just sensitive to so many things.

Praying for you. Please keep me posted. Blessings....

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