This is topic Parents of children w/ Lyme- Ideas for supplements and detoxing? in forum Medical Questions at LymeNet Flash.


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Posted by SashaC (Member # 18968) on :
 
Hello,
My daughter just turned 11. She has Lyme and Babesia.

Our LLMD just started her on mino and she is having a very difficult time working up to the dose he has prescribed.

We have made it to 1/4 of the dose he wants her to take. The day after she takes it, she stays in bed the entire day with a severe headache, nausea and low fever. So far, I am giving her mino every other day.

She hardly eats anything the day after her meds.

He did not suggest any detox or supplements for her besides a multivitamin and probiotics every day.

Do your children take anything else to detox? Do your kids use any other supplements?

It seems that she should be taking something more than she is.

I am waiting for a call back from her LLMD to see if he has any recommendations.

I was hoping that those of you who have children with LD have any suggestions of supplements and detox methods that have helped.

Thank you!
 
Posted by momlyme (Member # 27775) on :
 
Is your LLMD going by ILADS guidelines?

Did the LLMD prescribe something else besides the mino... or just minocycline? My son was on mino with rifampin and something else... I would have to look back.

At the minimum, read the ILADS guidelines for supplements and start getting the required supplements.

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

When I was new to all this, I printed that out and referred to it daily... I still refer to it often.

I suggest, when purchasing supplements to try to avoid those that contain magnesium stearate, calcium stearate and stearic acid. These are additives that are much like chalk - avoid them if you can. I wish I knew this when I started.
 
Posted by 4Seasons (Member # 14601) on :
 
My daughter has had a complex, evolving protocol for detox, but these parts have been there for years:

-Burbur (Nutramedix) 10 drops 3x day

-Chlorella (for binding) - 20-30 tabs twice a day, 30 minutes before a meal.


My LLND says nausea is an indication of an overburdened liver. Some of her suggestions:

-Vit. C 1000 mg. in glass of water

-Ginger root caps with meals

-Coffee Enema (probably the best, but hard with kids, I know)

-Castor Oil pack on liver

-Smelling essential oil of peppermint

-the herbs Bonese.t and Sasparilla help reduce nausea

My heart goes out to you and your daughter. My daughter was severely ill from age 12-15. She is now 16 and symptom-free (still on abx for now).
 
Posted by ticksickfamily (Member # 22786) on :
 
We have 3 children in treatment for Lyme and are using many different detox agents, it constantly changes depending on their particular problem at that point in time.

All my children are on mercury free fish oils as a starter. We have also used the following : Pekana Renelix and Itires, Nutramedix Burbur or Parsley, Tox-ease, Energetix Drainage Tone.

My older children do a FIR sauna. All the children have done epsom salt baths and lemon juice in water when needed.
 
Posted by t9im (Member # 25489) on :
 
Hi Sasha:

I am sorry to hear your daughter is ill with these two diseases. Our daughter also just turned 11 last week and she has Lyme and Babesia.

First everyone is different so the protocol our daugher is on may not work for your daughter.

Briefly we spent 8 months with 8 MD's and 2 children's hospitals and ran into the controversy.

We saw Dr. J in New Haven last May and I do recommend him as he has the most experience with children.

Our daughter started out on Mepron and Zithromax last May. The babs symptoms became worse but then did start to improve in July time frame (lyme was becoming worse).

Babs takes at least 8 months (mepron & zith is the recomended protocol) and while the symptoms have improved she is not done with Babs yet. I'm guessing at least 4 more months.

She added Tindamex in September (by then the brain fog had reached a point where she couldn't even have a tutor, lost the ability to read / focus and headaches came into play).

By early December cognitive functions started to improve and we started to add tutor.

We are now completing month 8 on meds with LLMD.

Also last October we started to see Dr. M to help with some of the diet and die off issues. He brings some of the holistic / herb treatments. Also while we luv Dr. J, communication can be difficult at times. Dr. M helps with this.

At the worst our daughter experienced lyme sypmtoms in the CNS, skeletal (we still worry about Bart but except for the sore soles which we hope is only lyme have not to date experienced bart symptoms) muscular and joint.

Add to this all the Babs symptoms of daily fevers, headaches, night sweats, difficulty breating, etc.

Over the past 4 or 5 weeks she has shown good improvement BUT with the set back she experienced in late summer we still take this one day at a time.

So she is now into month 16 from when she first became ill. Treatment is for 2 months after symptoms disappear. We are not there yet BUT as bad as it became in September - November she is much better.

Some of this is from stuff Dr. M has us doing. I'll have to have my wife post later as I'm not sure of all this.
 
Posted by SashaC (Member # 18968) on :
 
We see Dr. C in MO. I tried to call Dr. J in CT today to get on his waiting list,but they are closed due to the snow.
Our LLMD seems to have a habit of using monotherapy with both of us. It's not working out too well.
 
Posted by lightparfait (Member # 22022) on :
 
Dr. K will have some detox and natural lyme protocols for patients at his talk in NYC in Feb. Hopefully they will be posted on his site. He already has some free info there about detox and protocols that anyone can do on their own, when antibiotica are not enough ...at www.klinghardtacademy.com
 
Posted by t9im (Member # 25489) on :
 
Yes we received 24 inches yesterday. For babs the mepron breaks the coating the parasite issues to protect itself in the red blood cell and the zithromax kills it.

On lyme while both mepron and zithromax are used if my memory is correct from Dr. B's advanced topics once the lyme spirochete bores into a cell the ph level in the cell neutralizes some of the effectiveness of the zith.

The tindamax is for the cyst form of lyme.
 


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