momlyme
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Member # 27775
posted
My question: Is Worwood/Black Walnut/Cloves combo that was developed to fight parasites something that might help my son. He seems to only get worse.
History: Age: 11 Flu like symptoms 7/10/10 Achy joints/muscles/lethargic/tired/not sleeping Tested positive Lyme + Strep 7/14/10 Amoxicillin 3/day -21 days (no change/worse/developed tics in face and shoulders/not able to sleep/waking up early/napping during day/throwing up/ fevers/ headaches) Back to Primary care 8/17/10 Doxycycline Hyclate 2/day 28 days +Prenisone 3/day - 3 days then 2/day -3days then 1/day 3 days (much worse- throwing up a lot) At this time I called my insurance company to find me a doctor that could help us. They referred me to an ID specialist-- who promptly told me that my son's illness was all in his head and he should go see a counselor. An eleven year old boy who was perfectly healthy and now gets tired walking across a parking lot and won't get off the couch to go play with his friends ALL SUMMER LONG - is faking it.
Then, I found this forum. Thank you.
I got a referral to a sane doctor -lol She had Lyme and now believes patients when they have Lyme
9/1/10 She put him on a combo of Rifampin 2/day and Minocycline 2/day AND took 12 vials of blood - not sure of all the tests that were done.
At this time, he started a gluten free/ sugar free diet - and the throwing up stopped... or at least it is a lot less frequent.
Got all the required vitamins (and some recommended) from Dr. B's Diagnostic Hints and 2008 Treatment Guidelines for Lyme -
Finally sleeping with Melatonin Less fevers VERY LITTLE (if any) IMPROVEMENT in muscle/joint/stomach/head/ everywhere PAIN
9/22/10 She called and said he tested positive for Babesia so she took him off the Rifampin and put him on Mepron. 2/day Also stopped CoQ + ALA
He was way worse for the first week. Now he is back to really bad. Winces in pain a lot. Asks for Ibuprofin right after he has taken it. Headaches constant ... lots of constant pain.
He can't go to school, he can't remember what he read 5 minutes ago, he still has facial tics although less frequently, he now says he has a stabbing pain at his rib cage like someone is putting a knife in and twisting it, again and again.
You know, when my DOG got lyme disease (last month) they gave her pain killers. What do you do for an 11 year old who is in constant pain?
As his mom, I can say this is difficult to watch. He's freakin' lethargic! He cries in pain and my heart wants to break. I feel for everyone who has this terrible disease.
Anyway... the question is about the Worwood/Black Walnut/Cloves combo... any opinions?
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
I think it's worth a try. Parasites were a HUGE part of my illness.
Babesia treatment is tough, and the first herx is particularly difficult. You really can't tell if a treatment is working for a couple months so you see how the cycles go, ie does he feel better after a monthly herx, even if slightly.
Also, zith or biaxin is usually given along with Mepron to prevent resistance. You also might want to add artemisia.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Epsom salt baths help the pain some. I used to use two cups of salts with one cup of baking soda .... soft music, candles, favorite drink in a wine glass .... it's both calming and healing.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Oh, mom I'm sorry you have to watch your son in pain. It sounds like he's on a good road to recovery, though.
Epsom salt baths are definitely helpful. I don't measure. I put a couple of handfuls (2-4, depending upon the day) in a hot bath.
Also, you might try to prop a pillow under his side to possibly help with the ribcage area. Sometimes, that outside counter-pressure can help.
As for the headaches, like six said, the soothing, calming environment helps. Maybe even a towel over the eyes to block out light. No reading, computer, TV, etc.
Posts: 797 | From New York | Registered: Feb 2008
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posted
Last year, my daughter had about 6 weeks of the worst pain she has ever had. I couldn't find anyone willing to give her pain meds either. She was 11, also.
I ended up putting everything else aside and getting in bed with her. I told her I couldn't do anything about the pain except be there with her.
I felt very hopeless then, because we were even between LLMD's, but it did get better. It will get better for your son, too.
Posts: 984 | From US | Registered: Dec 2007
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momlyme
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posted
Just reading the replies ... I am crying. Helpless is a good word for how I feel. Hopeless... not yet. I still have hope. I am not sure about him though. Today is a very bad day. He is quite sad.
Epsom salt baths it is. Thank you.
And six, he will be starting Zith (to go with the Mepron) next week. She didn't want to change too many things at once.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
That's a good way to do it. I never could tolerate zith, it kicked my butt too much, but my daughter took it very successfully. I took Biaxin with the Mepron.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
momlyme: Maybe you should read the post regarding "does anyone know of someone completely cure lyme"
lots of people there 100% well right now and I just talk to a mom,she and her daughter are completely well now and enjoy their life.
Posts: 158 | From pittsburgh | Registered: Aug 2009
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Jane2904
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Hi Mom, Sorry your son is going through some tough times.
Peppermint oil , very small amount rubbed on my Daughter's forehead used to help give some relief from the headaches.
I used to put small amount on my finger and rub her forehead. I did it for her as to be careful of the eyes.
I used to think our daughter would never get better, but she has improved with treatment. Your son will get better too!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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BoxerMom
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It's difficult to be patient when someone is suffering, but please remember that these infections take a long time to clear. Use all the strategies for symptom relief, but be prepared to have your son in treatment for as long as needed.
And we don't all progress in an upward-trending fashion. We often get worse before we get better. Remember, that is normal. If you are with a good doc, your son will get there.
momlyme
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Member # 27775
posted
I have read that post about people who are completely cured. Yes patience is difficult. I know he will get better and that it will take time. Today was particularly hard... luckily the day has come to an end and hopefully tomorrow is better.
Thank you everyone. You have helped me again and I hope to return the favor someday when I am stronger!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Oh sweet Mama! I'm so sorry you have to watch your son go through this and I'm so sorry he is going through this.
I'm still totally baffled as to why medical "professionals" dismiss this disease and say it's in our heads. It seems as idiotic as saying the sky is red and not blue.
Hugs to you both.
Posts: 256 | From Texas | Registered: Jun 2010
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t9im
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momlyme:
I am so sorry your son has to go through this.
Our daughter also has babs and lyme. We are now in the 5th month on mepron and zithromax and added tindamex 3 weeks ago.
The Dr noticed improvement in the babs symptoms unfortunately the lyme symptoms have not improved. If anything they have become worse.
The headaches, bone pain are definitely babs but it took 6 to 8 weeks b/4 our daughters constant fevers started to alleviate.
She is better in some ways so we have hope but realize Babs is at least 8 months treatment and Lyme will be longer after that.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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kidsgotlyme
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My thoughts and prayers are with you mom. We are going through some tough times here at my house too.
Just taking one day at a time is the only thing that I know to do. School is not happening right now because she can't remember anything she reads.
I guess an education will do you no good though unless you have your health. I figure that if it takes a little longer to get through high school that will be alright with me.
FYI- We add a little lavender oil to the epsom salts bath. It helps to calm you and help you sleep.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Rumigirl
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Surely there is something that your dr will ok to give your son for the pain! At least Ibuprofen or Tylenol (check the doses for his age).
And if that doesn't do it at all, ask if he can't have tiny doses of something stronger. It's not good to be in pain so much. I don't know what is usually given to kids, but it's cruel to withhold pain relief (not cruel of you, the medical profession, the laws, etc).
Magnesium Oil put on externally can help a lot, Swanson's is a cheap source. It's not really an oil, it just feels like it. You can use lots of it all over, esp where it hurts the most.
Are his headaches migraines? If they are, he should be evaluated by a headache neurologist and treated for that. Believe me, I know what it's like! But I'm an adult, he's a kid---that's much harder.
Posts: 3771 | From around | Registered: Mar 2008
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I just wanted to send my prayers that your son gets better. I can't imagine watching my child go through what I did. I had horrible, terrible, untolerable pain, and at first at least they did give me something.
Is there anyway you could ask the docs for maybe something with codeine? I know they give that to very young children with injuries, broken bones etc. I wish I had a miracle cure for you, when the treatment starts to kick in, he WILL feel better.
I would keep going to doctors until someone gave him some help with pain. I feel so badly for you both Posts: 41 | From Springdale Arkansas | Registered: Aug 2010
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My 13yo has had her headache and muscle pains for over 2 years now, nothing we try seems to help---
But she has improved in many other areas, so we have to hold on to Hope and patience--
Unfortunately, it is a long process, but they will get better!!!
Feel free to PM me if you want to "talk."
{{{HUGS}}}
Posts: 648 | From northeast | Registered: Feb 2009
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tick battler
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posted
So sorry your son is suffering. I can relate to what you and your son are going through. My heart used to break every day. We are on year 3 of treatment and my 6 year old twin boys and 4 year old girl are SO MUCH BETTER! The boys did 2 years of abx and now are improving on an herbal protocol...something to keep in mind after you knock down the infections a bit.
If I had to do it over again, I would have switched to the herbs sooner b/c we are now dealing with leaky gut and candida from all of the antibiotics. They are allergic to many foods now b/c of this. It will get better eventually. You are very wise to keep him on a GF diet. And I would do probiotics 3 times/day if you can. Use different ones.
Just my opinion, but I would recommend asking about adding rifampin back in. Wasn't he doing well on that drug? The best combo for my 6 year old was zith, rifampin and Mepron with artemisinin. Some doc's don't like to combine these meds, but Dr. J didn't seem to have any concerns about it. The rifampin is what got rid of his 8 month headache. I have found that if you can treat all or most of the infections at the same time, then you can make the fastest progress.
I would seriously consider adding artemesia to go after babesia and other parasites. Enula also hits some parasites and also often hits babesia, so that would be another option to consider.
Hope this helps. Hang in there. It will get better.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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You can email the Psychiatrist who had lyme herself and has treated many lyme patients.
She noticed that low doses of Ambien worked really well for pain and insomnia.
I have tons of pain, and feel so sad to hear that your son has pain. I am so sorry.
I am praying for him.
I also read that vitamin K shots help with pain, but I am not sure and never have tried that.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Thanks everyone!
The wormwood, black walnut and cloves IS a parasite cleanse and the reason I was asking about it is because babesia (as I understand it) is a parasite. A friend recommended it to me as her mother took it for cancer. One doctor hypothesises that ALL disease AND cancer are parasites and therefore the whole family should go on the cleanse.
We went to a health store today & bought "Intestinal Support" made by eclectic institute $23 for 45 pills - It is a combo of the 3 - wormwood, black walnut and cloves - it is so hard to know if a supplement is GOOD potency!
If anyone knows of a good, potent supplier of these herbal supplements. P.M. me. My dog has lyme too and she is throwing up and having difficulty walking after her antibiotics ran out on Friday. I'm putting her on this cleanse & my son will start when he is through with the mepron /zith combo.
This morning was my son's first good day in months. We started off with a game of scrabble and some laughs. For most the day... he seemed almost back to normal.
This afternoon Grandma brought him some "gluten free chocolate chip cookies" she got at a church bazaar. He was sick after just 3 cookies. Must have been sugar, chocolate or they were not really gluten free.
He was in bed early.
He does take Ibuprofin. 2@200mg (total 400mg)- I was giving him 600mg but doctors said to cut it back. I was giving him too much.
In the first few weeks, he was in so much pain -- and the doctors would not give him anything for the pain... I started giving him a half of a hydrocondone (sp) (which I have since found out is the same as Vicodin). I only gave it to him at night because he wasn't sleeping.
A PA at our pediatrician's office threatened to put me in jail for giving narcotics to a minor -- she said it in front of both my kids and scared them half to death. Now, my son doesn't complain of the pain and he wont take anything unless a doctor says it's ok because he doesn't want me to go to jail
He takes melatonin to sleep... Ibprofin (he says it does nothing) for pain... And he's sad a lot. He was a happy kid
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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I'd ask the Dr for pain med. He has legitimate pain and to not treat that is barbaric. When he feels better you can taper him off.
Posts: 383 | From Ar | Registered: May 2007
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