posted
Hello to all, I am not new to LymeNet but I've had to re-register so to speak because by old e-mail is no longer in existence.
To the point, I've been dealing with Lyme disease in it's Chronic stage (Neuro symptoms all around with heavy fatigue) for many years now (15) and I've seen three different doctors over the past five years since I was diagnosed in 2010 with no help after seeing Dr. J (big name) with one year of IV and months prior and after on oral.
My second doctor was not sure I had Lyme until my recent culture from Advanced Laboratories came in positive.
My current doctor is retiring and I've found a new doctor for the future but have yet to set up an appointment because for a very long time now I've been looking to get an extensive stem cell treatment administered but only when I could afford it as well as if my research lead me to the right clinic.
With that said, are there any "lymies" out there who have considered stem cell treatment or had it done. If so, any success, improvement in symptoms? Also, are there any clinics you would suggest?
I currently have my eyes set on one that utilizes mesenchymal umbilical cord cells in both intravenous and spinal intrathecal transplants. I wanted an extensive treatment, not a simple bone marrow extraction and transplantation.
I have neck issues and all of the neurological trimmings (heavy cognitive issues, neuropsychiatric, and fatigue). There is actual MRI issues in my neck and I have CCSVI as well (which I had two procedural variations on the "liberation procedure" with no help whatsoever from both of them - $20,000 later).
Sorry for the length, I hope to see some responses and any opinions whatsoever on this topic. Thanks for your time.
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Breaking up the post for easier reading for many here -
[ 06-06-2015, 11:50 PM: Message edited by: Robin123 ]
Posts: 8 | From Virginia, USA | Registered: Jun 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
TA444~
My suggestion would be to read this entire thread before deciding:
Mild hyperbaric stimulates release of your own stem cells, and has many more benefits. It took me from an 8 year Neuro-Lyme nightmare, to total, med-free wellness.
Others are making significant progress with it also, as reflected toward the end of the thread. I'm also in touch with many more who do not post on LymeNet.
I also considered stem-cell, but am very glad I took this route instead.
Posts: 1888 | From Earth | Registered: Jul 2013
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quote:Originally posted by Robin123: I'm pming you -
Robin, I tried PMing you back but it said your mailbox is full.
I'm not sure if you would prefer I simply take in the information you sent me or respond here.
Please let me know as I did not know you were a moderator until I saw that you edited my post so I do not want to respond here with specifics if you would prefer I don't. Thanks.
Posts: 8 | From Virginia, USA | Registered: Jun 2015
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Mild hyperbaric stimulates release of your own stem cells, and has many more benefits. It took me from an 8 year Neuro-Lyme nightmare, to total, med-free wellness.
Others are making significant progress with it also, as reflected toward the end of the thread. I'm also in touch with many more who do not post on LymeNet.
I also considered stem-cell, but am very glad I took this route instead.
Phoiph,
I don't believe I've heard but maybe 1 or 2 success stories in my research and talks with Lymies using hyperbaric oxygen therapy, especially neuro-lyme patients or later stage patients such as myself.
This of course doesn't mean that I believe it is incapable of helping people like us but I would prefer going the stem cell route since both are costly and I have heard of people having more help getting treatment utilizing stem cells (especially cord cells).
I read a good portion of the page and I appreciate you sending it my way.
I personally had a few short sessions in Northern Virginia that showed no sign of help for me.
A local clinic has a hyperbaric oxygen chamber but their pricing is very high for the treatment (a 3 month per session fee) and I would prefer to finally go for stem cell treatment before considering a long schedule of HBOT.
This clinic is the closest in a 200 mile radius and while I do not discount is potential for helping Lymies it would cost 1/2 to a 1/3 of what the total for the Stem Cell treatment I've considered at various clinics.
I will keep that thread link to finish reading and I appreciate your help.
Posts: 8 | From Virginia, USA | Registered: Jun 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi TA444~
Just want to be clear that I'm not trying to sway your decision, just offering my experience on another treatment option that involves the release of stem cells.
Also, you mention having done a "few short sessions" of hyperbaric treatment without improvement. That is expected; it is a cumulative process.
The protocol that worked for me and is working for others involves a commitment of frequent, consistent, mild pressure treatments over time, which is most economically accomplished with a home chamber.
That said, I wish you the best of luck with your decision and treatment...
Posts: 1888 | From Earth | Registered: Jul 2013
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