This is topic HLA-DR4 positives: What have you tried? in forum Medical Questions at LymeNet Flash.


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Posted by cottonbrain (Member # 13769) on :
 
Hi all. If you have the HLA-DR4 genetic variation, as I do, can you share what treatments have worked for you? thanks!
 
Posted by SForsgren (Member # 7686) on :
 
I am HLA-DR4 positive and have done a number of things to support detox. Drainage remedies, homeopathics, chlorella, chitosan, detox foot baths, etc. all at different stages of my treatment.
 
Posted by Clarissa (Member # 4715) on :
 
Cholestyramine and NAC to cleanse liver.
 
Posted by PinchotGail (Member # 5066) on :
 
Cholestyramine, homeopathics (Pekanna), Cowden protocol, lymphatic massage, Infrared sauna, chlorella, chitosan....?????.....think that's it....hubby does too......we are 2 peas in a pod.

Gail
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Posted by cottonbrain (Member # 13769) on :
 
I notice that some of you do / have done multiple things to detox. Do you do them consecutively or try to do some together?

For instance, can you take the chlorella and NAc together?

Is there a safe dose for NAC that does not interfere with absorption of minerals, etc?

Also, is there anything you can do to stop the HLA-DR4 expression?

I don't really know how in the world that works, but Buhner says that stephania helps to stop HLA-DR4 expression.

(Stephania has a dubious rep right now too -- lots of it is tainted, i guess)

thanks for your replies!
 
Posted by sparkle7 (Member # 10397) on :
 
I just started reading about Lipid Replacement Therapy. I haven't tried it but it may be helpful.

-----

Diagnosis and therapy of chronic systemic co-infections in Lyme disease and other tick-borne infectious diseases

Townsend Letter for Doctors and Patients, April, 2007
by Garth L. Nicolson

Lipid Replacement Therapy for Chronic Infections and Restoring Mitochondrial Function

Lipid Replacement Therapy is useful in providing membrane lipids in unoxidized forms to repair nerve and mitochondrial membranes that are damaged by heavy metals, chemicals, and infections. (20) For LD patients, we recommend the oral supplement Healthy Aging containing NTFactor (Nutritional Therapeutics). This product comes as tablets that are taken twice per day. For children, it should be ground up between two spoons into a coarse powder that can be added to several spoonfuls of applesauce. The NTFactor is not bitter, but it is slightly sour, and some children actually like the taste. The dose should be four to six tablets twice per day for adults. For children: one-half to one tablet for children up to two years-old; two tablets for children two to three years old; three to four tablets for children four to five years old; and four to five tablets for children five years old and older. Research has demonstrated no adverse responses with NTFactor, even at many times these doses. Since this formulation is a completely natural membrane lipid mixture, there are no known toxicities and no known toxic dose limits. NTFactor can also be taken in a form with vitamins, minerals, and probiotics (Propax). Lipid Replacement Therapy has been shown to improve fatigue scores and mitochondrial function in various chronic illnesses. (20)
 
Posted by cottonbrain (Member # 13769) on :
 
sparkle, I cant believe you mentioned lipid replacement because i have spent all day (well, what little bit that I am upright) researching it.

I'm trying to find a product like NT Factor but without the Alpha Lipoic Acid or L-carnitine.

I notice when I take the ALA or carnitine, my hair falls out -- I'm pretty sure they block my thyroid receptors; I've read they can do this.

getting off track, Does anyone know of a lipid replacement that does not have ALA or carnitine??

Also, has anyone who is HLA DR4 positive noticed that lipid replacement makes a difference in detoxing?
 
Posted by Rianna (Member # 11038) on :
 
Cholestyramine with Actos (45mg)
NAC
Vitamin C
Nutramedix Burbur/Parsley/Pinella
Lymph Drainage (face and body)
Quercetin

Whilst on Cholestyramine replacing Vits & Minerals
 
Posted by cottonbrain (Member # 13769) on :
 
a couple more questions:

Rianna, what is the reason for taking Actos with Cholestyramine?

and for everybody:

Did you do the detox before, after, or during standard abx treatment?
 
Posted by PinchotGail (Member # 5066) on :
 
I first detoxed w/ cholestyramine after a year of abx and Mepron for 7 months. Had a tremendouse headache for first 5 days but after that things got better....more energy and less pain.

Only used CSM for 8 weeks then went back on abx. While on abx all the time always took chorella, milk thistle, and Pekanna drainage remedies.

Later added in NAC, glutathione, and lymphatic drainage massage while still on antibiotics.

Been off meds since July and doing Cowden protocol but not very faithfully [Roll Eyes] .....still taking all drainage and detoxing stuff and using the infrared sauna since Nov. THAT has been DEVINE for our whole family!!! (Infinity sauna)....we researched intently....husband is a "green bulding" consultant so it had to be quality materials and a great warranty.....so far so good!!!

Gail
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Posted by Rianna (Member # 11038) on :
 
Rianna, what is the reason for taking Actos with Cholestyramine?

Actos is a diabetic medication but it is also now used to down regulate the cytokine inflammatory response that occurs during a herxheimer's. A herxheimers is seen when a patient starts antibiotics or uses cholestyramine. This inflammatory response is due to the Neurotoxins being produced by the borrelia, these neurotoxins increase as the boressiosis is killed by antibiotics and if the neurotoxin is moved or drawn out of the body by chlorestamine.

My normal herx's from antibiotics was terrible, so for some people when they elimitate/mobalise the Neurotoxins the inflammatory response can be very severe, please refer to the original work by Dr Richie Shoemaker. (see extract below) My LLMD just knew that I would need actos to down regulate the inflammation/cytokine response and he was sooooo right - For me personally I have massive cytokine storms when implementing even low dosages of Cholestyramine, but as the weeks go by I am gradually upping the dosage. Again my LLMD just knew this would be a very difficult part for me and very necessary to get me back on IV AB's.

Extract From Article by Dr Shoemaker: Some lyme disease patients, especially those who'd been sick longer then three years, suffered what Shoemaker calls "a symptom intensification reaction" early in CSM therapy, similar to, but much more intense than, the Herxheimer reactions experienced previously during antibiotic treatment due to the mobilization of Neurotoxins. The reaction was reduced with pioglitazone (Actos) therapy or prevented by pretreatment with Actos, which downregulates proinflammatory cytokine production by fat cells.
 
Posted by cottonbrain (Member # 13769) on :
 
that's really interesting that the Actos prevents 'intensification of symptoms.' I assume that means the herx, even though there seems to be some differentiaiton made.

very good to know!

thanks, everyone, for the good info.
 


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