bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Hello All: Barb Peck here. Member 3235 ( been a member for about 20 years). Struggled from undiagnosed Lyme ( and other infections) from a transfusion in 1975 to 2001 - DX'd in 2001 by PCR. Neurological, Fascia and Ocular manifestations.
Mostly OK ( on and off) over the last 25 years, after original abx pulsing protocol - which is probably posted here on Lymenet somewhere - but I've had a few relapses. Mostly every 5 years or so.
Last one was 2021 .. might be having one now.
Probably not from a recent bite - but from the cystic form coming out of latency.
I almost died from Anaplasmosis 2 years ago ( but I knew the symptoms) and got on abx right away. Test from Mayo Clinic verified diagnosis. Reportable infection to the State ( VT).
QUESTION for You all... How many Have had Fascia Pain from Lyme - and what ABX did you take.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome back bpeck You have quite a history, thanks for posting.
This was one of my first symptoms, wide-spread fascia pain in between shoulder blades, lower back and neck.
My LLMD started me on Doxy, Amox, Nystatin, Plaquenil and Flagyl on weekends only. Within 4-5 months my pain diminished but it was a very rough protocol yet totally worth it.
I tried other treatments other than antibiotics such as prolotherapy, trigger point injections, licensed massage therapy, lidocaine patches, ect. They offered short term relief.
The things that do help immensely are epsom salt baths, hot showers, swimming, stretching, heating pad, pain meds and aspirin and PEM with red light. I also wear a back and neck brace in the mornings.
I do not have a LLMD at this time but I really feel she is the only one who could help to diminish my increase pain levels. I don’t have the financial or mental capabilities to commit to her very strict protocols though.
I hope you find relief. Daily pain is a soul sucker.
Posts: 3217 | From Florida | Registered: Nov 2016
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posted
In the summer of 1970, I stayed with someone in the country, and every day for a month helped pull out and burn about 50 ticks off their poor dog.
I don't see how I could have avoided being bit by a tick but didn't see a bull's eye rash. I did start losing energy at that time, and that was my only symptom for many years.
The fatigue got to the point that I didn't have the energy to support myself. It happened that at that time I got married. My husband has been very supportive and understanding. Generally, the medical community has not been, with a few exceptions.
Through the years, I was diagnosed with chronic EBV, CFIDS, and FM. I had some good periods that lasted for months and some awful times that lasted for years.
Now, I see a connection between how much rest I got and how ill I was. It was more complicated than that, but rest has been very important to my health.
In 2005 I went to a new doctor, a LLMD, not that I knew anything about LD. He made a clinical diagnoses and started treatment with ABX, one at a time that was switched to another every 6 months.
I did have fascia pain. It was in my upper back.
A massage therapist that I went to for years worked wonders. It felt like she wasn't doing a thing, but I would be in more pain for a few days, and then had relief for a couple of weeks.
I was treated for Bart and Babs among other infections. I have methylation deficiency, and take supplements for it. I also have a rife machine which has been very helpful.
I was told a few years ago that I no longer showed LD symptoms. However, I know I will always be on maintenance for LD.
As I age, various issues arise that need addressing. They change, but the constants are pain, fatigue and a stubborn sleep disorder.
I can't say I'm well, but the fatigue is less than it was for years, and I'm sleeping better. The pain is now arthritis, and I work with that.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Yes. I have 50 years now of history with ticks.Some of it very bad.
I've steered clear of steroids my entire life, even when no one knew what was wrong with me ( Pre Lyme PCR dx) and Docs wanted to prescribe them.
Sept 16th and Sept 30th 2024 I had cataract surgery which necessitated me using a combo eye drop ( steroid/antibiotic/anti inflammatory ) 4 drops a day for a week/ then reducing a drop each week - which essentially meant close to 2 months of these drops. I really wonder how much were absorbed systemically.
Those drops preceded this fascia pain. The last time I relapsed and was IgG positive was 2017 .
I just had an abx challenge ended just before Xmas, so will get tested in a few weeks.
Possibly I made the environment conducive for some Lyme to emerge from their biofilm ( the cystic form). Hopefully the test data will help me know. I've felt this way before ( and I always tested + 30 days after abx challenge)
PT and Fascia release are helping as is the Kinesio tape.... And the pain has started to wax and wane in intensity.
I just wondered if there was any new therapies on the horizon for this kind of pain.
I'm workin" on this (yet again) will post when I know more or have something worthy to say.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hello, bpeck,
Please read the Mild Hyperbaric Thread (in it's entirety, if possible...I know it's long, but IMO worth the read):
Another good introductory resource is "The Oxygen Revolution", 2016 Edition, by Dr. Paul Harch.
Feel free to PM me for more information if you are interested.
Posts: 2072 | From Earth | Registered: Jul 2013
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I had weekly massages for fascia FMS pain. The massage therapist I used did deep long strokes. Made a difference in about 3 weeks. At the time I did not realize that I had chronic Lyme and was living in a moldy house. But in spite of that, the massages helped.
My pain was much improved but I continued to have fascia pain. Especially in my shoulders, upper back and arms. I had an infected tooth. My dentist put me on Clindamycin. I had never been on it before. Within 24 hours all of my pain was gone. It was incredible. And I have never had such an immediate improvement like that again.
Sadly, repeated uses of Clindamycin did not continue to produce the same results. After I was finally diagnosed with Lyme and Babesia microti, I looked back on that experience and realized I was dealing with mold and tick born disease.
Fast forward a few years, my generous MIL bought us a used mild hyperbaric chamber. It was a life changer. In time, gone were the relapses. And eventually all of my FMS/fascia pain. I now use it for maintenance, aging and improved health.
Phoiph was an incredible source and support. I would encourage you to check the thread out and reach out to her. It was life changing for me and my family. For which I will be forever grateful.
Posts: 1844 | From Maine | Registered: Jun 2004
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Thanks, kgg...:)
I'm so grateful for your improvement with mHBOT, and for all of the knowledge and experience you share.
Posts: 2072 | From Earth | Registered: Jul 2013
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posted
I used to jump in a hot shower all the time, before I found out about Lyme.
Clindamycin antibiotics worked for me to take all pain down to close to zero. So wondering if there would be some successful antibiotics or herbs for you to try.
Now I just take capsules of turmeric and that keeps the pain way down. Have you tried turmeric? It's harmless - it's a cooking spice.
Posts: 13171 | From San Francisco | Registered: May 2006
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
quote:Originally posted by daisys: bpeck, I've never heard of kinesio tape...could you please elaborate?
This is the first time I've used it, so don't know yet if the relief is long lasting.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
[QUOTE]Originally posted by Phoiph: [QB] Hello, bpeck,
Please read the Mild Hyperbaric Thread (in it's entirety, if possible...I know it's long, but IMO worth the read):
Hello Phoiph: I've been off and on this list for over 20 years, so am familiar with hyperbaric therapy and have used it in the past. That therapy, plus others have helped -
I am now pretty sure I have the S or L form variant ( biofilm cysts ) after un diagnosed Lyme for 27 years- and was in late state neurological and ocular Lyme when dx's in 2000. They can remain latent for a long time. Few things kill them in that form.
What has worked for me when I have what I think is a relapse ( like now) is an IgeneX WB and PCR to verify my suspicions then use HCQ to alkalize any cell compartments then pulse ABX combos.. or take them serially for 7 to 10 days. That's worked well in my previous relapses.
I was just wondering if there is any thing newer out there... Alternative or conventional for that migrating aching ( tight fascia) pain.
Thanks for all the info though. Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
From Robin Have you tried turmeric? It's harmless - it's a cooking spice. [/QB][/QUOTE]
Hi Robin:
Yes I have .. I take many supplements - some on a regular basis - some occasionally.,,, not helping now.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Thanks for the reply KGG,
I see there are still quite a few long time members still here.. Grateful for this list.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Originally posted by bpeck:
"Hello Phoiph: I've been off and on this list for over 20 years, so am familiar with hyperbaric therapy and have used it in the past. That therapy, plus others have helped - ..."
bpeck,
Can you elaborate on how you used hyperbaric in the past (e.g., the number, length, and frequency of sessions, degree of pressure, etc.)?
The method that worked for me and for many others to produce lasting results requires consistent treatments at a mild pressure over an extended period of time (i.e., "low and slow"). Most people do this with a home chamber for practical purposes and cost effectiveness.
Years ago, people did higher pressures and shorter courses of treatment for Lyme, but this was not as effective or sustainable (also not good long term for neurological and other conditions).
I can testify that the "low and slow" method works for pain, as I had severe, intractable neuropathy, and also the type of pain you describe.
Posts: 2072 | From Earth | Registered: Jul 2013
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Interesting that both kgg and Robin mentioned that Clindamycin helped their pain at least initially.
Clindamycin is known for anti-inflammatory and immune-modulating properties, (as is mHBOT, with a lot more benefits and without the side effects).
Posts: 2072 | From Earth | Registered: Jul 2013
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posted
Have you tried any full-body lymphatic drainage with an experienced person? I used to feel better after sessions. Of course, I only felt better for a little while because the pain would build up again, but I always think it's good to try things just to see how we respond - it just becomes more information about what helps and what doesn't.
Now, I'm only hypothesizing when I say this next bit. I'm thinking back on supplements I tried besides turmeric. There was a time when I drank noni juice and took grapeseed extract pills. After one month, those two remedies ended the lipomas (fatty tissue tumors) that were growing in various places in my fat tissue.
If they were powerful enough to do that, who knows what else they could do? Completely natural and harmless.
Posts: 13171 | From San Francisco | Registered: May 2006
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quote:Originally posted by kgg: I had weekly massages for fascia FMS pain. The massage therapist I used did deep long strokes. Made a difference in about 3 weeks. At the time I did not realize that I had chronic Lyme and was living in a moldy house. But in spite of that, the massages helped.
My pain was much improved but I continued to have fascia pain. Especially in my shoulders, upper back and arms. I had an infected tooth. My dentist put me on Clindamycin. I had never been on it before. Within 24 hours all of my pain was gone. It was incredible. And I have never had such an immediate improvement like that again.
Sadly, repeated uses of Clindamycin did not continue to produce the same results. After I was finally diagnosed with Lyme and Babesia microti, I looked back on that experience and realized I was dealing with mold and tick born disease.
Fast forward a few years, my generous MIL bought us a used mild hyperbaric chamber. It was a life changer. In time, gone were the relapses. And eventually all of my FMS/fascia pain. I now use it for maintenance, aging and improved health.
Phoiph was an incredible source and support. I would encourage you to check the thread out and reach out to her. It was life changing for me and my family. For which I will be forever grateful.
Interesting to read here that clindamycin took away all your pain. It was the miracle antibiotic for me too. All pain gone in a week, and it lasted 5 years for me. Now I take turmeric capsules, one in the am and pm and that keeps the pain down.
Funny story - when clindamycin suddenly worked for me, I called my sister and told her I think I can fly down for your honoring (for her work). I made a one-way, last-minute plane flight reservation.
When I got to the airport, they pulled me aside, thinking I might be a terrorist due to the one-way, last-minute reservation. They proceeded to blow puffs on me to see if I would blow up.
I started laughing so hard, 'cause this was my welcome back to the world! I think I was the happiest little suspect they ever saw!
Well, I didn't blow up and was allowed to get on the plane!
How's that for a return-to-the-world story?!
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Robin123--Your story definitely made me laugh!
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10171 | From Illinois | Registered: Aug 2004
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Sorry, Robin123, just seeing your response. Wow, what a response you had as well! That is funny about the TSA. You finally feel better and you are treated like a suspect. You handled it better than I would, I think.
Posts: 1844 | From Maine | Registered: Jun 2004
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posted
Thanks - I think I was too excited to be bothered by what they were doing!
It's good to tell funny stories. I was at a memorial this week honoring a wonderful executive at our independent living center, and inadvertently made everyone laugh when I spoke, tho I wasn't planning on it.
I said I had attended the center but I didn't know what was wrong with me (25 years of not knowing). People used to ask me why I was lying down all the time. I didn't know the answer so I would tell them I was writing a book on ceilings. The person would look up at the ceiling and we'd discuss it. It was a great distraction! And that made everyone laugh at the memorial gathering!
Well, I still haven't written that book yet, but I do know my favorite ceilings in town!!
Posts: 13171 | From San Francisco | Registered: May 2006
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
{{{gentle hugs}}}
Posts: 1844 | From Maine | Registered: Jun 2004
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