I've made 2 attempts at private messages to group members to try and reach Stephen Buhner. I've just read his book, "Healing Lyme", and am more confused than ever! He says it doesn't matter if it's TOA or POA-free. The majority of the websites say it should be TOA-free. One doctor told me today to use 5 drops in 4 oz. of distilled water 3 times/day!! From what I've read here, that would cause a pretty severe herx!!!!
This is for my 12-year old niece, who is in a hospital on a ventilator and uses a feeding tube. The doctors tell us it is a motor neuron disease, or ALS. She was on 2g. Rocephin for about a month before they noticed some gall stones and switched to Claforan. So IV abx. and glutathione since Feb. 24th.
Pretty sure there is an email address at that site -- I would use a title for your email that includes the words "hospital" and "urgent or emergency" so maybe you would get a quicker response.
My interpretation of the book's comments is that the TOA free might help, but the whole herb would be better.
In a situation like this, if this was me I would start with one drop and go from there. Maybe fewer drops more frequently?
This is not medical advice but just my personal opinion.
Another option -- have you thought about contacting the Lyme pediatrician Dr J for a 2nd opinion?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I think the treating doctor should be asked whether it would be appropriate to add this to her meds. A doctor who finds a patient is being treated with unauthorized medications may decide this is too hazardous and bow out of the case.
Many people have tried this herbal med, not all have been helped. The tendency is for people who weren't helped to keep quiet, leaving only the other people doing all the posting about efficacy.
[ 08. April 2006, 04:27 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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Here is a journal abstract that may be of interest. I was thinking about your niece's situation overnight and I would have to agree with Lou but for another reason.
I am concerned that adding another potential killing agent (the cat's claw) might only make her more toxic. If she is only getting IV nutrition she is not getting the antioxidants she needs to stop the brain inflammation.
Possibly IV Vitamin C or the IV Phosphatidylcholine (I see you have been reading some of Marnie's posts on this topic) would be of benefit.
Your niece is already doing the IV glutathione which is 1/2 of the PK protocol.
If you read the new article in The Townsend Letter for Doctors it explains that the Lyme toxin is very similar to the toxin produced by Clostridium botulinium and this could presumably explain the paralysis -- the neurotoxin dieoff of Lyme bacteria caused by the IV Rocephin may be blocking the acteylcholine receptors and preventing nerve impulses from getting through.
The PK protocol is expensive as the IV phosphatidylcholine is imported from Switzerland. It helped my hubby a great deal with Parkinsonian type tremors -- Parkinsonian drugs (especially Artane -- a very strong anticholinergic) came very close to paralyzing him during one hospitalization.
Hubby has used IV SOD in the past but it did not seem to be of much benefit for him. Was not on this at the same time he did the IV phosphatidylcholine.
Hope this info is of some benefit. Keep us updated. Our thoughts and prayers are with your niece.
Ikeda K, Kino****a M, Iwasaki Y, Tagaya N, Shiojima T.
Fourth Department of Internal Medicine, Toho University Ohashi Hospital, Tokyo, Japan.
Gene mutations of Cu/Zn superoxide dismutase (SOD) have been discovered in familial amyotrophic lateral sclerosis (ALS). Oxidative stress also plays a role in the pathogenesis of sporadic ALS. Whether antioxidant therapy is beneficial in this fatal disease is now crucial.
We have shown that SOD treatment improves neuromuscular dysfunction and morphological changes in wobbler mouse motoneuron disease. Progressive spinal motor neuronopathy and axonopathy, predominantly in the cervical cord, occur at postnatal age 3-4 weeks, leading to muscle weakness and contracture of the forelimbs in this animal. These motor deficits rapidly increase by postnatal age 6-8 weeks, and then slowly progress.
Wobbler mice were given two doses daily of phosphatidyl choline-bound Cu/Zn SOD (PC-SOD, 10(4), 10(5) U/kg) or a vehicle solution by intraperitoneal injection from postnatal 3-4 to postnatal 7-8 weeks of age. PC-SOD treatment attenuated progression of motor dysfunction, prevented denervation muscle atrophy, and delayed degeneration of spinal motoneurons in wobbler mice. This raises the possibility that PC-SOD may have therapeutic potential in human motoneuron disease.
PMID: 7496172 [PubMed - indexed for MEDLINE]
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Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
PLEAD for IV Mg sulfate...ongoing slow drip.
The botulism anti-toxin is expensive...and is trivalent.
So is ozone...trivalent.
Think about it.
Ozone saunas -> NO - nitric oxide, dilates and kills many pathogens-> trigger acetylcholine release (vasoconstrictor).
Can't breathe ozone! Big difference between respiratory and metabolic acidosis!
A choline deficiency disrupts the Na-K pump leading to an elastase problem (elastase can be measured). This impacts the lungs...
"A substance called elastase destroys the alveoli's ability to expand and contract. Doctors Gloria Massaro and Donald Massoro at the Georgetown University School of Medicine reported in the medical journal Nature Medicine that they were able to reverse elastase damage to the alveoli of animals with a simple vitamin-type substance called retinoic acid. They actually reversed emphysema!"
We KNOW vitamin A drops in lyme (as does vitamin E...which is needed to release hydrogen).
The antioxidants are really important.
[ 09. April 2006, 07:03 PM: Message edited by: Marnie ]
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