Ibuprofin question

[KaraM]

I'm posting this for someone in our support group. She's having trouble getting on the board. Her son is 17 and has been suffering since he was very young. Within the last year or two, diagnosed with PANDAS, LYme and Bartonella. He has had at least two IVIGs. He has made some progress, but not enough. He sleeps about 18 hours a day....I'm not sure what abx he is on, but know he is on some. Here is her question...

 

Dr B has just recommended we add 600mg of ibuprofin 2x daily to DS's drug cocktail and I was wondering if anyone out there had any experience with this approach. We are in battle with CIGNA trying to get more IVIG covered and carrying on with a ton of antibx in the mean time. On ray of hope is that H's bartonella rash is disappearing!

 

Thanks.

Edited July 10, 2012 by KaraM

[NancyD]

We tried a 3-month test adding 600 mg tid and it did help with OCD/anxiety and fatigue. The half life of ibuprofen is fairly short so we were told 3 times daily. I didn't want to keep her on it indefinitely and risk her having more serious GI problems so now we just give as needed.

[LNN]

I just posted on the Pandas forum about Enhansa, which our LLMD just suggested for DD as both an antifungal/yeast and an anti-inflammatory. You may want to follow any responses - it may be an alternative to the ibuprofen. Like Nancy, we reach for the motrin when things gate bad and see quick (w/in 20 min) results. In bad patches, we'll use it 2-3x day but usually only for a week or two at the most. The Enhansa, if it works, would be a safer option, esp. since one supposed benefit is that it detoxes the liver rather than adding to its burden.

[tpotter]

We have also done ibuprofen. Make sure, though, that it's done with plenty of food in the stomach, as it can be very rough on the stomach. We also have seen excellent results with it. But, again, I wouldn't do it for more than a few weeks at a time, give a break, see what's happening, and only resume if he backslides.

 

I'm really glad the bart rash is resolving. So is my DS's. Isn't it exciting to see that go?

[sf_mom]

We too use Ibuprofin on a periodic basis but not regularly due to potential GI issues as well.

 

One of my remaining and most predominate symptoms has been fatigue. Every time we treat more aggressively the fatigue sets back in on a daily basis. The most helpful thing I've done for fatigue has been treating oxidative stress. I drink the follow detox drink 2 times a day and it can keep me feeling great "most" days.

 

• 2 oz Aloe Vera Juice: Aloe Life 'Gold' has the best concentration: Aloe is anti-inflammatory and provides many needed minerals and vitamins 'zinc, Bs, etc'
   
  
• 18 Drops of Chlorophyll: Chloroxygen: Regenerates and oxygenates red blood cells: http://www.herbsetc.com/Topics/PDF/chloro_bro_07.pdf
   
  
• 2 Scoops of Vitamineral Green by Health Force: All green foods that helps with inflammation and normalizing PHs: http://www.healthforce.com/shop?page=shop.product_details&flypage=garden_flypage.tpl&product_id=6&category_id=1
   
  
• Juice of one lemon: Detoxing
   
  
• 14 oz of water
  

Most recently I've added 2000 m.g. daily of MSM to the drink and I am still herx'ing fairly intensely from it. It is a natural sulphur and it too helps with oxidative stress by permeating the cell walls. Other things MSM will help with are allergies, parasites (especially interested in treating nemotodes), constipation and stomach acidity, detoxing of heavy metals. Here is some additional information on MSM http://www.msm-info.com/. I recommend adding MSM once the helpful benefits of the detox drink are recognized. If MSM is added go low and slow.... I am experiencing all kinds of rashes, headaches, mood liability and fatigue from herx reaction. However, I feel the long term benefits MSM will far out weigh the herx response. When I am not experiencing herx symptoms I feel fantastic. Most days I am able to function on aggressive antibiotic therapies that includes Azithro, Omnicef, Mepron, 4 Herbal remedies, etc. so its worth pushing through on the rough days/times. I use the Jarrow MSM and all the above including MSM can be purchased at Whole Foods.

 

Minimally, I would highly recommend looking into any natural anti-inflammatory over regular Ibuprofin use.

Edited July 11, 2012 by SF Mom

[sptcmom]

I'm posting this for someone in our support group. She's having trouble getting on the board. Her son is 17 and has been suffering since he was very young. Within the last year or two, diagnosed with PANDAS, LYme and Bartonella. He has had at least two IVIGs. He has made some progress, but not enough. He sleeps about 18 hours a day....I'm not sure what abx he is on, but know he is on some. Here is her question...

 

Dr B has just recommended we add 600mg of ibuprofin 2x daily to DS's drug cocktail and I was wondering if anyone out there had any experience with this approach. We are in battle with CIGNA trying to get more IVIG covered and carrying on with a ton of antibx in the mean time. On ray of hope is that H's bartonella rash is disappearing!

 

Thanks.

 

DS has lyme induced autoimmune recurring osteomyelitis which is his last issue left. Treating autoimmune is a tricky terrain and needs to done right and in baby steps if one ever hopes for the body to independently regulate.

DS gets episodes of screaming pain in his pelvis, inability to walk, bone marrow swelling etc i.e. osteomyelitis like symptoms. I immediately put him on an anti-inflammatory and immune modulating homeopathic spagyric cocktail of Pekana biological medicines along with topical application of remedies in lotion form. Pleo Sanum has a fantastic product that European athletes use and it works like a charm. I alternate that with Aleve or Motrin so this way I need to do the NSAIDS only once a day instead of two. I do the cocktail and cream twice even three times day.

Works very well on my pediatric and adult patients too.

[KaraM]

Thanks, Everyone!