New to Lyme (but not this mess!)

[FallingApart]

Hello all,

 

Quick update to those who know me...DD has stabilized on the PANDAS front. I credit this ENTIRELY to homeopathy. I can go into that on another thread or can explain if anyone wants more details. However, she has never fully recovered and she always deteriorates drastically when around strep or another illness. She clearly has PANDAS but doesn't recover like a PANDAS child should. I asked the ped about doing a Lyme test about a year ago and she declined, but here we are. Last week we did a slimmed down version of the Lyme test, not the Igenix one. But DD came up as positive for Lyme. Obviously from here we will do the full Lyme test that you all are referring to here. We have a doc selected that we want to use, but his office is closed until March and who knows when we will get in once he reopens.

 

My question is whether there are any general remedies that can be applied to all Lyme patients or are they all very specific and case by case? I see Bee venom, etc listed here and there. Are there general things that can be used? Since DD will have to do another blood test in the near future, I would also want whatever I give her to not alter the results of that test. I'm not one to sit and wait tight until I get to the doc if something can be done in the meantime. However, if I have to I will. It has been 2.5 years since this began and I finally feel like we might be getting somewhere. However, I also feel like I just inherited another child with special needs!!!!

[momofgirls]

Wow, I remember you and your daughter's story. So many of us have discovered lyme behind the 'pandas' syndrome. It is my personal belief that when we clear all underlying infections our kids can really begin to heal but untill then everything else is just temporary. I think you have uncovered the root of your daughter's health issues. Only advice is to find a really good lyme doctor for treatment. You might start by contacting ILADS.org for a doctor referral.

 

Hello all,

 

Quick update to those who know me...DD has stabilized on the PANDAS front. I credit this ENTIRELY to homeopathy. I can go into that on another thread or can explain if anyone wants more details. However, she has never fully recovered and she always deteriorates drastically when around strep or another illness. She clearly has PANDAS but doesn't recover like a PANDAS child should. I asked the ped about doing a Lyme test about a year ago and she declined, but here we are. Last week we did a slimmed down version of the Lyme test, not the Igenix one. But DD came up as positive for Lyme. Obviously from here we will do the full Lyme test that you all are referring to here. We have a doc selected that we want to use, but his office is closed until March and who knows when we will get in once he reopens.

 

My question is whether there are any general remedies that can be applied to all Lyme patients or are they all very specific and case by case? I see Bee venom, etc listed here and there. Are there general things that can be used? Since DD will have to do another blood test in the near future, I would also want whatever I give her to not alter the results of that test. I'm not one to sit and wait tight until I get to the doc if something can be done in the meantime. However, if I have to I will. It has been 2.5 years since this began and I finally feel like we might be getting somewhere. However, I also feel like I just inherited another child with special needs!!!!

[Suzan]

Hello there! Glad you found your way, looks like you are on the right path. My girls were the same, helped by learning about pandas but not recovering the way I would have expected if pandas was the only piece of the puzzle.

 

Since you are interested and have seen benefit from naturopathic treatments, I would suggest that you read Healing Lyme by Stephen Buhner. He gives a herbal protocol that can be used alone or in conjuction with antibiotics. Getting to a good LLMD is needed but I think you will like this book.

 

Susan

[philamom]

I also remember your story. I was following your blog, but recently lost your info. My daughter always went into remission (90-95%) with antibiotics with each episode until March of 2009. At that time we moved forward with daily abx and IVIG. While this helped at times, we couldn't get her back in remission. In July 2010 she was diagnosed with lyme, and in September co-infections. She is currently on a combination of abx, and even though she still reacts to strep/viruses, she is getting better. I'm amazed at the progress she is making. I pray you find the answers to true healing!

 

I would be interested in hearing more details of the homeopathy you're currently doing, when you have the time.

 

Thanks!

[MichaelTampa]

I will second the Buhner book, and also add the "Insights into Lyme Treatment" by Connie Strasheim. These books together will provide a great deal of information regarding treatments, and what you can do beyond abx, and what you can do to get started now. Also, the ILADS website has "guidelines for treatment", written by Dr. Burrascano, and a couple/few years old now, but there are a lot of excellent supplement recommendations there, even if he does recommend quantities beyond what I have found to be necessary.

 

Things you can do to get started:

 

- treat parasites/worms, don't try to test for them, everyone has them, everyone with lyme has this as an important issue to treat. Can be useful to have a skilled practitioner with this to use antihelminthics (sp?), but lots of herbal formulas as well can at least help. I took BioPure's Gamma Rizole for a couple months and then their Zeta Rizole, and this was very helpful. Avoiding onions, garlic, and mustard can also be helpful, as this is food for the worms.

 

- biofilm--biofilm is a bunch of junk in the blood, heavy metals, minerals, and so on, that the bugs hide in; digestive enzymes like nattokinase, zactinase, lumbrokinase, a couple others you may read about, can help digest this

 

- heavy metals detox, people do this in a lot of ways, binders like chlorella or cholestyramine (or many others) are important, far infrared sauna can help, I know think allergie-immun, a company in Germany has helped me the best with this, by reprogramming DNA to allow the body to recognize the heavy metals as something to remove. Radinex and SyDetox are also some good homeopathics for detox. A lot of approaches out there for this.

 

- address diet and food allergies/sensitivities, if this is an issue (and you haven't already). here, the allergie-immun treatment is one way to go, NAET is another idea, but it wasn't permanent for me

 

- oxygenation, such as by using an oxygen concentrator with about 97% concentration, can help get oxygen to areas where the bugs are, necessary to kill them, makes the abx better but also helpful by itself, particularly if chronic fatigue is involved

 

- a variety of herbs, as you can read about from Buhner, there is also NutraMedix line, and Byron White line, really a lot of choices out there

[sf_mom]

I remember your story well and so grateful you unraveled this for your daughter. All the recommendations thus far are fantastic. I would add to find the best possible LLMD in your area and be in front of that Dr. every six weeks until you gain confidence in her recovery.

 

Detoxing is critical in the success of Lyme treatment so any regimen you can start in advance will help. We use Bentonite, burbur, chlorella.

 

I do not believe you should spend any additional money on further confirmatory testing. The results you have in hand should get you started with treatment and let an LLMD focus on further testing for potential co-infections, etc.

 

-Wendy

Edited February 9, 2011 by SF Mom