Topic: shingles again, and b.duncani activated? MCAS?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I have had a tough time and I am trying my best, but I got shingles again within 12 months of each other. both sides of body and in trigeminal nerve.
no drs seem to know anything.
this most recent shingles I have felt pretty bad since (june) and having v strange sx.
I had similar SX two months after covid/shingles July 2023, and now, two months after shingles again I have same SX but maybe worse, IDK.
Drs. seem to know even less about shingles than they do about TBD- if that is even possible! oh my
I had a pos. IGM test for b.duncani 3 years ago via Igenex. had some treatment but my dr. took ill . I have not done much on my own due to TBI and everything else my brain is stretched thin.
SX: feeling like im moving when I am not followed by what I thought was POTS, but maybe not since BP was only going up. went to 149/109 and i felt like I was dying so I called 911. they came and it increased some but then went down. right after I called them I took an extra dose of H1/H2 for MCAS just in case it was that.
along with the feeling of moving while still, terrible nausea,/vomit gut wrenching pain, extreme head pains, veins on face feel like about to explode, shingles pain burned more (no rash) and I go t new areas of the pain with a poss. tiny blister on back of neck!
overall feeling like I was giong to die along with sharp left side chest pains, hands with lacy pattern on palms, beau's lines on nails, red finger tips, slightly grey lunulas, nails peeling and flaking, I cna't remeber what else.
then after a bit my throat started itching and ears and eyes and skin (mildly) so I took benadryl and SX started to slowly improve.
these are not my typical mcas sx, but could it be "just that"? for the last few months I have felt pretty sick and had new sx come: gushing facial and full body sweats during the day, intermittent nausea, really bad smelling armpits, and cricopharyngeal spasms.
- those are all relatively new symptoms and sound like babs to me so thats why im thnking . I had labs done yesterday and alk phos was high-ish (15) but that was about it.
saw a fill in doc for pcp and she also sent me for lyme titer and b.microti test, not sure what good that will do!
no one believes me anyway, and the lyme spcialists close by don't seem to want to treat me for duncani. which I can guess why.
So, now what ? does it sound like b.duncani to you? Or mcas can do all this?? (what dr. told me yesterday and she thinks I should go on low dose imatinib that mcas dr. rx)
I need support, thank you for reading this!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3577 | From Eastern USA | Registered: Jul 2013
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Oh, shingles, horrific painful condition, I feel for you Lisa. My pain management doctor diagnosed me with it.
I can’t diagnose you but I can tell you that you will not magically get better without treatment. You need a LLMD. Some mainstream doctors can treat to keep symptoms at bay, sometimes. Most won’t.
Your range of symptoms sound familiarly like Lyme, Babs AND mcas. Doing nothing to curb your suffering will result with no result.
I have experienced many of what you described, had to self-treat and things are moving at a snail's pace but I’m currently having more good days than bad so this I celebrate. I wish you also have more good days than bad.
My go to for Babs is Researched Nutrtionals Cryptoleptis. It has been a game changer. Sweats non existent at this point. Super expensive but it works for me. I ordered Malarone to aid in lowering the infection. Art also works if you can tolerate it.
I added chorella and milk thistle for detox and it gave me back some long lost energy. I also implemented aquatic therapy (my pool) which is 50 laps per day.to rebuild muscle mass and lung capacity.
Just suggestions that have helped me. Hope you get back into any form of treatment to move the needle towards getting your life back.
Another problem to consider is that it could be a different species of Babbs. Dr H has written about finding Babesia odocoilei and Bartonella species in chronic Lyme patients.
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
OMG LisaK! Try Bonine (OTC) for motion sickness, ice for head and face, also try hydrocortisone cream for your face.
My chest pain this year was from MCAS and compounded Ketotifen worked for me.
Hugs and prayers for you!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6352 | From Columbus, GA | Registered: Jul 2004
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
First of all, I am so sorry you are feeling so bad!!!
For prevention of the shingles I would be on L Lysine. I take a daily dose of 1000mg. If I were you, I would take 3 tablets for an outbreak. And possibly 2 tablets for maintenance prevention. I have a sensitive stomach and it does not bother me. If I have had a very stressful time, I increase my dose, for a few days, as stress can bring on an outbreak.
These symptoms can all be caused by an autoimmune condition: The sensation of moving while still, is from Vestibular dysfunction. The lacy pattern on your hands is called Livedo Reticularis. Nails peeling and flaking. Hot flashes are also not uncommon with autoimmune as temperature dysregulation. Neuralgia can also be an autoimmune symptom. As can nausea. Then MCAS compounds and complicates the picture.
It is hard with tick born diseases to tease out how accurate an IGM or IGG result is. Because it messes with our immune response.
My son had nausea for years and years, decades. We went to see numerous LLMDs. Spent our retirement $$. No one could help his nausea. They all said they could but didn't. The first time his nausea was impacted for the good was when he started Remicade which is a biological used for autoimmune conditions.
Dr Steven Phillips wrote a book in the last few years titled: Chronic The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again. You might want to check out podcasts or videos on the book and see if anything rings true.
He does think that it can be stealth infection causing health problems. With my son, he was going autoimmune before anyone even thought to look. He never responded to Lyme treatment. I just wish someone way back then had thought to see if he had an autoimmune condition. It would have saved us some money and perhaps preserved some of his health. Ah, but hindsight is 20/20. fwiw.
On the same note but a little different, Dr. Bruce Patterson thinks that it is not an active infection but pieces of the pathogens that have not cleared our system that cause autoimmune conditions or a chronic state of inflammation and sickness. He is establishing protocols on how to heal this.
No answers, but perhaps some food for thought.
Posts: 1729 | From Maine | Registered: Jun 2004
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Lisa K,
So sorry to hear this.
This question is not intended to cause controversy, but I'm wondering if in addition to having Covid, you were also vaccinated for Covid?
The Covid vaccination has been connected with shingles reactivation:
Regardless of what triggered this, I believe consistent mild hyperbaric would be of great help to your condition overall. Please PM me if I can help.
Posts: 1919 | From Earth | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Phoiph- TY, and no vax for me, like none at all any more becasue I am afraid of reacting. also, hyperbaric mild was a thought, but i remember reading somewehre it is contraindicated with babesia maybe? or it was something I can't remember
kgg- TY, - all your info is good for me to read to see again or new. In this past month I have been taking the L-lysine daily, but just went for muscle testing 2 weeks ago and they said my body said via testing I odn't need it, but that my adrenals are nonexistant and that is what is cauing my stress on body/imflammation/ autoimmune contributing along with parasites and "all my diseases"
I also found out via the test that I have achlorahydria and have started taking acid pills to help which has been somewhat of a game-changer so far! I lost 6 pounds in the first week and can fit rings on my fingers that haven't fit in a decade.
I realize this is not 100% fix for everything, but from what I have been reading the stomach acid plays integral part in so many things that I have beeen having issues with, so I am excited and hopefull. I will check out Dr. Phillips' book
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3577 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Bonnie and ak TY , I am processing all this and hopefully every thing can help me get closer to going without breakouts. I just had a mini one last week when I was tremendously stressed over the dog dying and grandson got surgery the same day,
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3577 | From Eastern USA | Registered: Jul 2013
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
LisaK, just to clarify, there is a lot of false information about Babesia and hyperbarics. It also has spread to include Bartonella as well. It is not true.
Mild hyperbarics is not contraindicated with Babesia. It doesn't "feed" it. I tested through Quest positive for Babesia microti. I have a chamber and got my health back. Am I !00%? No. I had lyme and coinfections for multiple decades before I started diving. Am I having a life outside of the bed and house? Yes!!!
Please, please check out the mild hyperbaric thread and consider adding it to your treatment.
Posts: 1729 | From Maine | Registered: Jun 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
ok kgg, ty
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3577 | From Eastern USA | Registered: Jul 2013
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Thanks for dispelling that myth kgg!
I had rampant Babesia and Bartonella, which was evident on blood smear testing just prior to starting mHBOT. (I had had it for 7 years prior.)
I had tried the usual drugs but nothing worked, and I just became more and more ill and toxic (including yellow vision from Mepron).
mHBOT gave me my life back. As kgg said, the O2 doesn't "feed" Babesia; it doesn't work that way. mHBOT creates an inhospitable environment for pathogens and returns immune system function so your body can take care of the bugs. This is just one of the many healing properties mHBOT offers.
Posts: 1919 | From Earth | Registered: Jul 2013
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