djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Hey folks-
Most of you old-timers here know my story, so I won't spend a lot of time going through the details.
I have been sick off/on (unable to work) for the last 3.5 years.
After being given oral steroids undx Lyme had a field day and the rest is history.
I have been on multiple abx combos as well as used many alternative means available.
I was in remission for 1 of the last 4 years and relapsed due to not taking meds long enough and general carelessness once feeling better.
I am now back at 50% some days 60% and continue to progress.
Some words for you who have been at this a long time:
1- Keep going 2- Keep taking your meds (whatever route you have chosen that WORKS) once symptoms abate for at least 6 months (ie- anti-microbials, DETOX, metal tx, etc.) 3- Keep trying new things if what you are doing is not working. There are infinite possibilities. I have spent 100k plus in the last 4 years on treatments as a lot of you have and they have all led me in a different direction which in turn has taught me a lot. 4- Keep going
Here is what is working for ME currently:
(This is condensed, but is enough info to get the gist. It has been changed multiple times and I would say I am currently on the least amount of meds right now that I have been in the past)
Lyme is never just Lyme, as is such w/ and serious chronic condition; and it is my belief that it must be addressed on all levels for the best possible outcome.
Anti-Microbials-
Rifampin Biaxin Plaquenil *all daily
Anti-Fungals-
Fluconazole & Nizoril rotated in pulses as needed.
Detox-
Pekana drainage kit Pysllium whole husks Lots of good clean water Milk Thistle ACZ zeolite spray
Supportive supplements/meds-
Wilson's adrenal rebuilder E-Lyte liquid concentrated electrolyte water daily Minerals of life liquid concentrate daily Lifepak multi Magnesium Malate Nattokinase/Lumbokinase/Serrapeptase (rotated daily) LDN 3 mg Ambien 5 mg Ativan .50 mg Good quality probiotics (vsl, theralac, custom, etc)
Adjunctive therapies:
Walking 30 min daily Strength training every other day Swimming Stretching Taking care of my puppy (this has been helpful w/ my recent gains) Chiropractic adjustments 2x weekly
I am lacking in the heavy metal department which I will fine tune in the near future, as well as use some new meds (for me) such as Alinia, tetracycline, and possibly look into stem cell therapies and watch the reports coming in.
There is no single long term solution for most of us, but in this fashion it appears I am once again winning the battle.
Hope this helps.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Thanks so much for the update, Derek - and lots of good advice. Happy to hear you are improving!!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
It is always VERY encouraging to those of us still very ill, that folks are turning the corner and getting better! Thanks for sharing!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Derek, That looks amazing; but expensive! Mind if I ask about what those adjunctive supplements, etc are costing?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Thanks guys.
The treatment is expensive, yes.
Approx 500$ monthly in total care for Lyme & Co. (Drs, supps, Rx meds, etc)
It does really add up, but I have better success addressing multiple issues at once rather than just taking abx.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
So discouraging to hear how much it costs to get better. I just find this absolutely insane. There are THOUSANDS of us out here that desperately need help!!!! Why oh why do we have to suffer, some die, because we just do not have the funds to get GOOD help.
Thank God you were able to turn the corner.
Happy for you!!
Connie in St. Louis
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Derek, have you looked into mold as a possible contributing factor?
Posts: 3528 | From US | Registered: Apr 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Con-
Pekana drainage kit is homeopathic and works on all the major detox organs..
It has helped me w/ general toxicity issues as well as be able to tolerate therapy.
CD-
Yes I have read mold warriors and looked into those issues. We moved about 6 months ago into a relatively new apt w/ little to no mold whereas our other place was infested. This has helped (just moving) as well as running air filters pretty much non-stop.
(Schaller has a decent suggestion on this: get 2 boxfans, buy a 20x20x1 3m ultra allergen air filter for each and place it on the back. I then have 2, 20' fans running w/ the best filters possible for about 40$ every 6 weeks. Seems to do the trick.)
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
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