occasionally i come across a story of how someone wouldn't respond to tx, but as soon as they took care of something else...then tx worked.
lets make a list.
and lets be a little specific-like, what virus and what tx cleared it...what parasite-what tx etc
Posted by sixgoofykids (Member # 11141) on :
We have been talking about pyroluria here lately. www.drrandy.org has a good article (just click on article).
Posted by lpkayak (Member # 5230) on :
thanks...anyone else here?
Posted by lymeparfait (Member # 14268) on :
Start here Detox pathway cleared(pyroluria test and or treatment) Gut repair and rebuild good flora (progurt) clear emotional/psychological blocks/forgiveness Clear inherited or acquired disregulations and allergies (Allergie Immune Therapy)
Get ART tested and Igenex tested to find priority for treatment.
Then... Work on the appropriate Co-infections along with parasites, candida/yeast, and heavy metals.
Posted by dguy (Member # 8979) on :
anything immunosupressive in a Th1 illness could account for it, vitamin D for example
Posted by lpkayak (Member # 5230) on :
dguy-i'm sorry but i don't really understand. what is Th1 illness? and i thought vit D helped your immune system-not supressed it...
Posted by dguy (Member # 8979) on :
a Th1 illness is one in which Th1 cells are produced in excess (google it for details)
Lymies need to be very careful about vitamin D. Vitamin D sometimes gives the impression of boosting the immune system since it can help erode the cell walls of infectious agents, and kill them. However since Bb exists in a cell-wall deficient (CWD) form, vitamin D won't help. Furthermore, vitamin D is a form of steroid, and steroids are immunosuppressive.
Fish oil, for example, is extremely high in vitamin D, and that can help people feel better by reducing immune action and thus inflammation. On that basis, using the parlance common on this board, vitamin D is "toxic" to us, and caution is wise.
Posted by Lymeorsomething (Member # 16359) on :
My LLMD suspects that something is interfering with my progress. He is retesting me for viruses and metals, particularly mercury.
Posted by lpkayak (Member # 5230) on :
dguy-i have heard ppl say vit D is not good for lymies when referring to the marshall protocol.
my llmd does not believe in that.
i don't know which is right
there is a dr. cattell (not sure if sp is exact)-who says low Vit D is the cause of flu and many other problems including ms,als and i think fibro...
i can get more info on that doc if anyone wants it
i think Vit D is one thing we really don't know for sure about.
i have used steroid ear and eye drops-short term prednisone for asthma and cortef without a problem-they were approved by llmd.
so small amts of steroids can be ok sometimes.
there are a lot of things we still don't know about lyme.
Posted by m0joey (Member # 13494) on :
Vit D is controversial, but I just choose to go with my gut on this one. Avoiding the sun doesn't make any common or evolutionary sense to me... appropriately, I used to feel very sun-toxic, but in the last few months as I've gotten better, I've been sunbathing for 30 min/day without any problems whatsoever. I actually feel better with exposure.
Posted by Lymeorsomething (Member # 16359) on :
Yeah, many lymies have one or more low hormones as well and some do better when hormones are added back in...the key with hormones is in physiological dosing probably....
Posted by LisaS (Member # 10581) on :
Here are the things I constantly read you have to fix before lyme treatment will be successful. (If there is such a thing). Unfortunately I don't have the money to test for these little less treat them. But for people who do:
Heavy metals Yeast Mold Exposure Parasites Thyroid problems Allergies (especially food) Chiari Pyloria Vitamin Deficiencies
Posted by Keebler (Member # 12673) on :
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A gluten-free diet is also essential for many lyme patients.
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Posted by Keebler (Member # 12673) on :
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Excess porphyrins can impede progress. Links to TerryK's methyl posts are here, too:
If milk thistle is not on your plan, NAC might be considered:
This, from a protocol for Chlamydia Pneumonia (Cpn) which is a similar chronic stealth infection. This treatment protocol is also similar to that of chronic lyme.
This is what one of the protocol authors says about the power of NAC to help protet the liver:
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
See attached references.
My conclusion is that NAC should be the first agent in an anti-chlamydial regimen and should be a constant part of the therapy for this protective effect, not to mention it's effect against elementary bodies.
Liver Protection: Laying the Foundation for Optimal Hepatic Health - By Kathy E. Acquistapace, DC, NHP, CNC
Posted by CherylSue (Member # 13077) on :
My LLMD pushes Vitamin D, and he is about to write a paper on it. He thinks it is very beneficial. Even Dr. T of the From Fatigued to Fantastic book has abondoned the Marshall Protocol.
The update is Vitamin D is good.
From what I heard,
CherylSue
Posted by squashlyme (Member # 12865) on :
My LLMD (and myself included) think the answer lies in the absorption of the medications. Quinolones (Cipro, Levaquin) MUST be taken on an empty stomach to maximize absorption. In addition, some LLMD's are thinking Malarone might do something more than Mepron or work in a different manner. Malarone with Fish Oil and one teaspoon oil maximizes aborption. Also, most dosing is incorrect, I am taking 3 malarone am and 3 in the evening.
Posted by Lymeorsomething (Member # 16359) on :
How much magnesium is too much?
Posted by nomoremuscles (Member # 9560) on :
Some people get too sick from the response to therapy. The reactions make it impossible to keep going. Another problem for trx failures, in my opinion, is the gut getting messed up. Dysbosis is very hard to correct. Once that happens all bets are off.
As for the "d controversy" -- among d researchers there is no controversy.
Posted by Pinelady (Member # 18524) on :
PH Balance. If we don't have it, I think it is a lot harder to fix. We have PH balance to help the cells do their jobs.
Posted by Marnie (Member # 773) on :
pH = potential of hydrogen.
Hydrogen goes right into our cells, but to get INTO the mitochondria, we need the enzyme, CoQ10 to do this and all enzymes need Mg to be made...somewhere along the line.
ONGOING.
Taking an entire bottle of CoQ10 all at one time, besides being ineffective, won't work.
We need this enzyme ONGOING.
Yes, many of our cells are "hydrogen powered".
Photons split H20 into H+ and OH -. That looks to be a way far infrared is working, but it gets a lot more complex that just that.
It takes the addition of 2, not 1, phosphate transfers.
Bb is preventing 2 phosphate transfers in order for it to MAKE glutamic acid (glutamate) which it then metabolizes.
Bb is robbing our defense cells...they are "powerless".
Bb is INFECTING our defense cells.
"Autoimmune" is IMO...hogwash!
The body is not attacking itself. It IS triggering MMP2 and especially MMP9 (elastase and collagenase) to "pave the way" to REACH the infected cells.
We have immortal (HeLa) defense cells that are still infected.
These cells AND the pathogen in them must be destroyed.
Posted by bwillis (Member # 18811) on :
This thread is interesting. There are as many answers to this question as there are posters. That probably means that there are no specific answers. What works for one may not for another. Like I have thought from the beginning, its all a guess.
It does seem to me that if someone is selling it, it must be the one thing you need.
I think I'll try what I can afford, listen to my LLD, and trust in God. There are factors that contribute to wellness that don't come in bottle or pill form.
Posted by lpkayak (Member # 5230) on :
bwillis-i agree we are all different. just think about it: 300 strains of Bb, co-infecs, virus, each of us with different genes and histories...the variables are hard to fathom
but this thread is doing exactly what i hoped it will do. soon i will try to summarize the info. i'd like to have it on one page so i can cross off things i attack and then see what i should do next.
we all have our own reality with this disease-but i think sharing our knowlwdge and experience helps.
the one thing we know is we are all different and there is no accurate test or cure at this point.
i'm just trying to organize a huge amount of info for our mutual benefit
Posted by lpkayak (Member # 5230) on :
mold
see thread by littlelymie19 topic: mold experts out there - i need your help...
Posted by glm1111 (Member # 16556) on :
Dr. K treats all of his Lyme patients first for worms and parasites from the largest to the smallest.
They protect the bacteria, so it makes sense to get rid of them and then it will be easier to go after the other infections. It's like peeling an onion.
Gael
Posted by CD57 (Member # 11749) on :
I think also--I don't know what your definition of a good ILADs treatment is--but not treating coinfections because you don't have a positive test can be huge.
Treat for all co's whether or not you test positive = better success (IMHO).