What supplements work best for inflammation?

[Rachel]

I have been reading some old post on inflammation. I would like to know more about fish oil, bentoninte clay, oil of orgeno capsules, epicor, and mesosilver. How does is help your child with inflammation and pain. How much do you give if you feel comfortable giving out this information. Or you can pm me. My son has been living with daily pain ( headache, scalp, nerve pain). I do give him fish oil but not 3,6 ,or 9. In cooking, I use butter, olive oil, and coconut oil. My son has had the esr and cpr test and they are always in the normal range. However, recent testing indicates high Kynurenic acid and antibodies in Cunningham test panel were high. I have complained to an immunologist about my son's high pain levels. Our cardiologist has tried several different pain medications but nothing at this time seems to take the edge off except 800mg of moltrin. However, moltrin this high causes a sleepy effect, so that's not too helpful when trying to get school work done. However, not much school work was acomplished today. I have tried a lower 400-600 dosage every 4 hours but I cannot tell a difference and neither can my ds. BTW my ds is 5'10' and weighs 190lbs.

 

His pain levels range from an 8 and can go all the way to 10. When levels get this high, he wants a dark room with no noise. We have been to the hospital when pain levels were high and he was given morphine. It took the edge off for awhile but not for long. I have also read about Low Dose Naltrexone for inflammation. Does this help anyone?

 

If you have have the antibodies in the brain in a high range, is this normal to expect high levels of pain? Is this what causes the pain problems in your kids? I have also been reading up on the Kynurenic acid and understand that it causes the nerve pain with the presence of CaM Kinese. I guess I'm really trying to make sense of where my son's pain is coming from. I know it's not all from anxiety. He washes his hair every two weeks because he has very oily skin. But when he does it makes his headache and scalp pain worse. His vocal tics also start up but settle down about an hour later. He shampoo yesterday and today has been awful with incresed pain levels. I have been using the moltrin yesterday and today. But I want some pain relief for my son. Do you have any suggestions on some natural supplements? I am concerned keeping my son on moltin for a long period of time. But what would be considered a long period of time to be on moltrin? Just feeling frustrated. Sorry for the long post. Rachel

[rowingmom]

As I am sure everyone here knows, I am going to suggest Japanese knotweed for brain inflammation. Stephen Buhner also suggests kudzu, although we have not tried that one.

 

For an explaination on why and how it works, Buhner's book Treating the Lyme Coinfections: mycoplasma and bartonella has a good description of Japanese knotweed, as well as the other herbs used to treat myco/bartonella.

 

I have seen a double dose bring her out of a herx-induced flare in 20 minutes. We use it daily, and CBC/CMP tested monthly (now tri-monthly) have always been normal.

[JuliaFaith]

So sorry your son is having so much pain! My ds is almost the same size as yours and he had horrendous headaches in the beginning but not the pain.

 

Fish oil: Want to make sure it is high quality so you do not get more heavy metals in the system--we are currently using Nordic Naturals. Jarrow brand supplements have always tested well too.

 

Clay: My son used this in the beginning of treatment. It is really good for getting rid of heavy metals and detoxing. 30 min. before meal or 1 hour after.

 

Ds took oregano and curcumin (called CurcuSyn) capsules (at different times) for inflammation.

 

All of this helped a lot although with naturopathic supplements they may take a while.

 

All of this type of treatment along with thyroid meds, adrenal support (supports hormones), lyme and co-infections treatment, he slowly got rid of headaches. The Anti-parasite treatment showed the quickest positive result in the beginning.

 

It seems like others on this forum have dealt specifically with scalp pain before...will see if a search turns up anything.

Edited March 11, 2014 by juliafaith

[searching_for_help]

I don't know if this will give you any new ideas are not, but this is some info from a pharmacist on different things that can cause migraines. Hope it helps.

 

http://www.dearpharmacist.com/2013/06/27/finding-the-cause-of-migraine-headaches/

[qannie47]

Has a doc landed on a dx for all this nerve pain?

[ktdommer]

We take curcumin in a product called Enhansa from Lee Silsby Compounding Pharmacy. My sickest just went up to 6 a day after PANS diagnosis.

[3bmom]

What type of shampoo are you using? Organic will keep chemicals away. Showers open up our skin our largest organ for more absorption. Maybe a shower filter.

 

Tea tree oil may be good or bad. If you have Lyme or co-infections it may exacerbate the pathogens causing pain.

[Rachel]

I have tried about 3 different organinc shampoos. His scalp is very tender and he can't stand a comb going through his hair. My son will wash his hair but it's very painful. My husband helps with this task and it brings us both to tears. My son's vocal tics start up and his headache pain levels rise to level 10. Since he washed his hair on Sunday, his school work has suffered due to pain and fatigue levels. He tries very hard to be positive about his situation. I have given him high dosages of moltrin but it does not seem to help. My husband and I have complained to his current doctors about this problem. My washes his hair every couple of weeks but it's a bad deal. My husband and I have kept hoping the antibiotics would give some relief to this symptom. My son has been on antibiotic since December 21,2013.

 

Our best guess is that our son's brain is on fire. but he does not have the severe neuro psychic behaior symptoms. Which has blown our neurologist away. What I have noticed is long term and short term memory issues are much worse this school year. School work is so much harder. So I am wondering if this is some mild form of encephalities. I just really want a doctor to nail down his diagnosis so my son can have some relief from these symptoms. Because his symptoms have been progressing for 3 years, this has probablely made it harder for doctors to diagnosis. Low blood pressure and a high heart rate is not part of PANS/PANDAS. Maybe this is a new form or PANS/PANDAS. Who knows? My son does not meet the NIH criteria. Sorry for the ramble.

 

I have found Buhner's website and have been looking at some other anti-inflammatory herbs. I am ordering the Japanese Knotweed. Has anyone used Stephania Root or Andrographis Pantculata? Do these help with inflammation? Shampoos that contain Tea tree oil make scalp pain worse. He is using an organic baby shampoo with lavendar but this bothers scalp and headache pain levels.

[qannie47]

Have you thought about getting him a buzz cut? That way you can just run a wash cloth over his head instead of a full wash....you could get a really soft wash cloth as well.

[Rachel]

Triming with the scissors is bad enough. I would love to give him a buzz cut. With his scalp so tender and sensitive, he could not tolerate this. I gave him 800mg of moltrin 90 minutes before his haircut and he slept for an hour before I woke him up. This did help him relax some and I let him recline in his chair while I cut his hair. This is the first time I have tried giving him a haircut this way. It's also the first time I have given him this much moltrin. However, I'm not comfortable giving a huge amount of moltrin like this but at least we got through a hair cut. I did cut his hair short but his pain levels have been up the last three days. His vocal tic would come and go while I was cutting his hair. After his haircut, he got into the shower to wash up and shampoo. Any stiumlation on or near the scalp makes the pain levels worse. Out of all of his symptoms, this one has puzzled his doctors. I guess I could get my husband to make a video of this situation but we are both hoping that a doctor will get this symptom figured. My son says the headache and scalp pain is the worst symptom of all but he does not want to look like a little girl. He is one tough little teenager.

[sf_mom]

This may sound strange but it could be a severe magnesium deficiency. I would ramp up on the magnesium until tolerable. Meaning until he gets loose stool. Our LLMD typically recommends 2,000 m.g. plus per day. Another one of our Dr.'s gives it via IV for those that suffer from migraines. She claims it works 100% the time. With all supplements ramp up slowly. Again, a test like SpectraCell will help you determine vitamin/mineral deficiencies.

 

Like JuliaFaith and RowingMom stated is could also be the bugs. Per our Dr.'s, these bugs love to hang out on the nerve endings making them hard to treat and painful... specifically 'scalp' pain. The magnesium will feed them... keep them happy and also give him some strength to fight whatever he has. In the world of chronic infection, all these bugs including parasites get directly in the brain.... they love the fatty tissue.

 

Something like ALINIA would be a good anti-parasitic that crosses the BBB and will also treat other chronic infections. A comprehensive stool analysis is helpful in determining if there are parasites. However, it doesn't always pick them up.

 

Edit: Mold biotoxin's can also cause severe pain. I highly recommend the Real Time Lab test for mold in the urine.

Edited March 13, 2014 by sf_mom

[Rachel]

Thanks for the ideas sf mom. I will start with the magnesium first. He takes 700 throughout the day but maybe this is not enough yet. I know that Bixan will mess up electrolyte levels and I have increased the magnesium some but maybe not enough yet. We alternate the water and gatorade throughout the day. The Taurine will also help balance the electrolytes. I will go back and look at his last testing for nutritional defiencies, It was done by Genova and measured a bunch of things.

[Chemar]

I don't see Boswellia mentioned but it is an excellent anti-inflammatory supplement.

http://healthlibrary.epnet.com/GetContent.aspx?token=e0498803-7f62-4563-8d47-5fe33da65dd4&chunkiid=21617

 

Taking it with curcumin (extracted from turmeric) provides a double whammy against inflammation.

[sf_mom]

Genova tests blood serum levels for vitamin/ minerals. SpectraCell tests how the vitamins/minerals are used inner cellularly. I have found our children's results very dramatically from the two tests and now solely depend on the SpectraCell test.

[Rachel]

I was wondering what the difference was between these 2 test. I'm ready for my son to have the SpectraCell test.

 

 

I'm not heard of Boswellia. Thanks for posting the information.