momcap Posted July 21, 2011 Report Posted July 21, 2011 Our LLMD (MD/ND) put all 3 of my boys on a detox and supplement program while we wait on labs from IgeneX. She believes they all have lyme, bartonella & babesia, and has recommended starting treatment even while we are waiting on labs. DS7 (PANDAS) has been on and off abx for a year now. Currently he is taking a low prophylactic dose of penicillin to protect from strep. We are 1.5 weeks into the supplements and detox and I can't believe the difference. His defiance is nearly gone, and this is a child diagnosed with ODD. He is doing things he hasn't done in over a year - like wearing dress clothes to church and eating raw vegetables. On Monday he played soccer, and ran the entire game (short players, no subs). He scored 2 goals and pressed the other team the entire time. In the last few years he could hardly even run the length of the field once, so he has been forced to play goalie or defence, when he really wants to be a forward. I haven't seen his energy this good since he was 4 years old!!! He's just as reactive (drama queen!), and moody, and still having mild OCD issues. But things haven't been this good in a very long time! I know the road ahead will be bumpy, especially when we add in the higher dose abx, but I'm enjoying this for today!!!
ShaesMom Posted July 21, 2011 Report Posted July 21, 2011 What great news to see improvements on just the detoxing and supplements. I am sure this gives you hope that you are headed in the right direction. I hope this trend continues. Just an FYI-My non PANDAS child had a more positive WB from IgeneX than my PANDAS kiddo but both have Lyme. Would you mind sharing what supplements and detoxing you have started?
mama2alex Posted July 21, 2011 Report Posted July 21, 2011 This is amazing, fantastic news!! So happy for you. Thanks for sharing with us!
momaine Posted July 21, 2011 Report Posted July 21, 2011 I'd also be interested in what your doing for detox. I ran out of Glutathione this week and my dd's been a little worse. (except maybe today) I ordered more but it'll be a few days before its in. Might also just be the worsening post IVIG, but that usually happens right off and she had a good first week post ivig.
momcap Posted July 21, 2011 Author Report Posted July 21, 2011 Would you mind sharing what supplements and detoxing you have started? Sure, no problem! We started 2 weeks ago on a whole food supplement called Juice Plus, as well as 3 products from Nature's Sunshine called LYM-MX (I think it's a lymph cleanse), Enviro D-T-X (a general detox herbal combo), Super Omega-3, and probiotics (currently at 50 billion, trying to get up to 100+ billion as tolerated). We are adding more things (s. boulardii, antioxidants, and artemisia), but I ordered them online and they haven't come yet, so the improvement so far is just on these 5 things. The LLMD has a long list of detox supplements, and said our detox program may change throughout treatment, depending on how effective it is, and what we are trying to detox (lymphatics, bowel, liver, kidneys, heavy metals, yeast, neurotoxins, etc). I'm really excited about this program, and hopeful that we will finally have some sustained improvement!
Iowadawn Posted July 21, 2011 Report Posted July 21, 2011 What great news to see improvements on just the detoxing and supplements. I am sure this gives you hope that you are headed in the right direction. I hope this trend continues. Just an FYI-My non PANDAS child had a more positive WB from IgeneX than my PANDAS kiddo but both have Lyme. Would you mind sharing what supplements and detoxing you have started? The same thing is true of our middle child--both CDC/IGenex poositive no real PANDAS symptoms, in fact she was the only one in the family with normal titers (strep) when the rest of the family's were through the roof. She has always been my "here an ache, there an ache, everywhere at sometime an ache" kid. SHe has finally been convinced that "hmmmm, if I take my medicine I feel better"---wayyyyyyless moody & volatile. It took a couple of starts & stops to help her (14+) see the connection. We are still trying to figure out my oldest with the strep. Dawn
sf_mom Posted July 22, 2011 Report Posted July 22, 2011 We have been doing a ton of detox and all different types but mostly bentonite clay for a good 1 1/2 years. I bought into the concept of detox after working with a nutritionist that recommended it and actually seeing relief for our older DS within hours after taking a cup full of bentonite clay. We kept it up as result. Mostly recently I was having difficulties with my lymph nodes constantly being swollen along my bikini lines and neck. They ached so much my neck hurt and I would often get fatigued. Swollen lymph nodes and fatigue are currently my main symptoms. Our LLMD recommended a couple of things to help: any kind of jumping exercise or horse back riding (apparently the pounding clears the proteins that cause the lymph nodes to back up) and detox specific to Lymph nodes 'L Drain' by TransFormation. The L Drain definitely helped a lot but by the end of the day my Lymph nodes would be swollen again. More recently our Dr. recommended an every other day shot of Lymphomyosot....... It has helped tremendously. My lymph nodes appear normal, don't ache or swell again until right before I'm requiring another shot and my fatigue is GREATLY improved. Trust if you are seeing marked improvements it is helping. -Wendy
susie Posted July 22, 2011 Report Posted July 22, 2011 We have been doing a ton of detox and all different types but mostly bentonite clay for a good 1 1/2 years. I bought into the concept of detox after working with a nutritionist that recommended it and actually seeing relief for our older DS within hours after taking a cup full of bentonite clay. We kept it up as result. Mostly recently I was having difficulties with my lymph nodes constantly being swollen along my bikini lines and neck. They ached so much my neck hurt and I would often get fatigued. Swollen lymph nodes and fatigue are currently my main symptoms. Our LLMD recommended a couple of things to help: any kind of jumping exercise or horse back riding (apparently the pounding clears the proteins that cause the lymph nodes to back up) and detox specific to Lymph nodes 'L Drain' by TransFormation. The L Drain definitely helped a lot but by the end of the day my Lymph nodes would be swollen again. More recently our Dr. recommended an every other day shot of Lymphomyosot....... It has helped tremendously. My lymph nodes appear normal, don't ache or swell again until right before I'm requiring another shot and my fatigue is GREATLY improved. Trust if you are seeing marked improvements it is helping. -Wendy Wendy, Thanks for the info. What do you mean by a "shot" of the lymphomyosot? Is this the homeopathic oral drops you're talking about? And why every other day? My daughter's lymph nodes in her neck have been hard and swollen her whole life. I'd love to get them to drain. I may give this a try!
sf_mom Posted July 22, 2011 Report Posted July 22, 2011 (edited) The L Drain is something you can purchase on-line to help drain Lymph nodes. It is a liquid and I was taking 1/2 tsp 2 x day. The shots of lymphomyosot were given to me by LLMD. They actually taught me how to administer shot so I could do them at home every other day. I can not believe the relief I have had since starting. I'd say about an 90% improvement in my swollen Lymph nodes and about an 80% in fatigue. I'd talk to your Dr. about 'anything' they recommend for Lymphatic symptom drainage. -Wendy Edit: I feel like the swollen lymph nodes were triggered by new antibiotic and anti-viral protocol. I'm showing positive for 4 different viruses. XMRV, HHV6 are on the list. I just discovered yesterday that a skin tag I have on my arm is actually a wart which is also viral. I believe my viral component is huge part of my issues with Lyme. Edited July 22, 2011 by SF Mom
momcap Posted July 22, 2011 Author Report Posted July 22, 2011 That's interesting about the lymph detox. I'm going to start taking it too. My lymph nodes are always tender and slightly swollen. A side note on skin tags: I have heard of 2 stories of people who had skin tags removed, only to find that it wasn't a skin tag at all, but a tick. Ewwww! One is LLMD Dr. M in New York, and the other story is posted on our county health unit website which is a government website. Not that we don't have enough to worry about!
ShaesMom Posted July 22, 2011 Report Posted July 22, 2011 I just discovered yesterday that a skin tag I have on my arm is actually a wart which is also viral. I believe my viral component is huge part of my issues with Lyme. How did you discover the skin tag is a wart and viral? I have developed several skin tags in the last few years.
sf_mom Posted July 22, 2011 Report Posted July 22, 2011 I went to a dermatologist to have it looked... I thought it might be something that was pre-cancerous. I've had it for as long as I've been symptomatic for Lyme. I originally had my father-in-law who is a Dr. looked at it... he said it was skin tag and not worry about it unless it was bothering me. Well, its been bothering me so I finally made the appointment. I also have a lot of little white bumps on my legs that will sometimes open and scab over. I was paranoid of Morgellon's... Our LLMD looked at it because it sounded like Bartonella to him. Both LLMD and dermatologist agreed the little white bumps were viral. I have had them forever and they do look better. -Wendy
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