I am relatively new to this forum and LOVE it--I have read a ton and love that you can go back and research old threads. You all are so helpful and I feel so much less alone in this new Lyme adventure!!
Unlike many of you, it is my 17 yo daughter that is so sick and I am trying desparately to try to help her. Interestingly, I also have tested positive, but have no symptoms other than brain fog. My 19 yo son has also tested positive and he is fine except for fatigue issues. My goal is to help my daughter get on her feet, as well as to work on building the rest of my family's immune systems so that we do not get sick like she is.
My daughter was diagnosed in March of this year, and has pretty much been on the couch since then. She has all of the pretty standard Lyme symptoms: horrible GI issues (pain/nausea) constipation/diarrhea leg, head, back pain insomnia fatigue
We are currently treating with antibiotics (Amoxicillin), but she has been on and off of them so many times during these last months. We stop when she begins to herx really bad, then start back verrrrrry slowly--have yet to work her up to more than 1000 mg/day (LLMD wants her up to 4000mg/day). She is also taking Diflucan for yeast (just switched from Nystatin due to nausea issues). (1/4 of a doxycycline gave her the worst herx I have ever seen!!!--so have stuck with the Amoxicillin)
Supplements: Garden of Life Raw probiotics (85 billion) fish oil Vit D (6000 IU) Vit C 1000 mg Magnesium 500 mg Trisalt
We just ordered a FIR sauna, and are awaiting food sensitivity test results. I am considering nutritional IV's, and B12 shots.
Does anyone have any suggestion as any bases that are not being covered here?? Would appreciate any comments in that direction!
Thanks so much!!!
Posts: 63 | From north Texas | Registered: Apr 2011
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-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
no--what would that be???? (antiparasitic)
Posts: 63 | From north Texas | Registered: Apr 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I am not a doctor and this is not medical advice!!
My daughter has went through some really rough herx reactions. This did not stop us from treating her aggressively.
It seems to me that if you stop the abx everytime she herxes, you will not ever be able to eradicate the bacteria.
When my daughter is having major symptoms, we try to up her detox methods. We will do epsom salts baths, french green clay with diatamaceous earth or some charcoal. Also lots of lemon water.
This goes a long way in flushing the dying bacteria out of the system.
The only medicine that we ever had to back off of was Flagyl. It caused her neuropathy to increase too bad.
I know there are other reasons for stopping certain medications, but if it just herxing, I personally would try to just support the body and see it through.
This is just my opinion. I wish you all the best!
-------------------- 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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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I am not sure I would do much more until she feels better. Although I have to say that B12 injections really help me. Unfortunately, it stops working after a while. But it does help my energy level.
My son used to get nutritional IVs once in a while. Again it was helpful, but did not last. But the impact on our pocketbook continued...
I know it is hard to feel like you are not getting anywhere by having to stop and start the antibiotics. But if you herx too hard you can do permanent damage. Some have ended up in the ER with a life threatening herx. Go by your Mom gut. If she needs to back off then that is what she needs to do.
I am surprised with her nausea that she tolerates the Magnesium. Neither my son or I can take it orally. I am slowly trying to use Peter Gillham's Natural Calm. I have not found a tablet or capsule that I tolerate.
Diflucan used to nauseate me if I took it on an empty stomach. I hope she does OK with the Nystatin. I don't tolerate that at all. We all are so different.
Hang in there Mom, Karen
Posts: 1846 | From Maine | Registered: Jun 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Parasites/worms can play a MAJOR role in Lyme disease and is often overlooked even by LLMDs. Dr. K. treats ALL of his patients FIRST for parasites and SECOND for Lyme and Co.
G. I. symptoms can be a flag for parasites. Google parasite symptoms and also visit the Humaworm site for the symptoms list.
Parastroy is also a good herbal antiparasitic as is Hanna kroeger Wormwood. One mos is never enough and Parastroy recommends 6 mos. You can also look into pharmaceuticals such as Ivermectin.
Do a search on here for parasites and also search under GiGi for lots of good info on this.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Sorry to hear that your daughter is having a hard time. My daughter is sick too.
We are relatively new at this, so I really don't have the answers. I would think that her worse symptoms are probably from other coinfections or things like yeast, mold, or parasites. Has she been thoroughly tested?
My daughter also is very nauseated. Has been constantly since the start. She did test positive for some parasites and yeast. She is on Alinia and Diflucan for those. We have recently started a very strict diet.
I wish I had the answers for both of us! Best of luck. Hang in there!
I agree that detox is a good thing. My daughter says the FAR sauna makes her feel worse. Have you tried one before you invest in it? Epsom salt baths are easiest for her to do.
Posts: 312 | From Utah | Registered: Nov 2010
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Maybe increase vitamin c...... my husband says he felt better as he started increasing vitamin c. Though he is recovering from adrenal fatigue also.
He increased his c up to 20,000 mgs a day with no loose stools. He took 15, - 20,000 for a year now.
He only found out he has Lyme in June of 2011. We feel he's had it for 11 years.
Posts: 2603 | From USA | Registered: Aug 2011
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posted
kidsgotlyme:--french green clay and dimateous earth? What do you do with these--bathe in them? Where do you get the clay??
glmm1111:-- I will google parasites. . . Thanks for suggestion!!
sickofsick:--We have not tried the sauna yet, but bought one that she could keep her head and arms out. It was not too expensive, and we are hopeful that it will work. I think we will just start very slowly!
manname:--We will try upping the Vit C!!
Thanks everyone!!
Posts: 63 | From north Texas | Registered: Apr 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
We mix them both(FGC and DE) in water and then drink it follow with LOTS of water.
Start with maybe 1/2tsp. each per day. When doing epsom salts baths, we add 5 cups per bath along with peroxide.
I buy the 37% grade hydrogen peroxide that is sold at pool stores and use about 1/2 cup. It's easier than buying a bunch of 3% bottles, but make sure you don't get it on your hands while you are measuring and pouring it in as it is caustic.
We like to use fresh lemons when doing lemon water. My daughter always feels better when doing these things.
-------------------- 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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posted
What is the peroxide supposed to do? And why would you use it if it is caustic? I'm sorry, I have heard of using peroxide, but not sure why???
Is the FGC and DE supposed to help with detox? We use DE for natural flea repellent in the yard!! Never thought of ingesting it!!!!
Thx for info!
Posts: 63 | From north Texas | Registered: Apr 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Not sure of the science behind the peroxide. I got this recipe from others on here.
The only reason that I use the 37% solution and only put 1/2cup per bath is because it's just easier for me.
It's not caustic once you mix it in the bath water. I just hated having to buy so many bottles of the 3% solution in the store.
The FGC and DE are both great detox drinks. Make sure you get the food grade DE.
-------------------- 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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posted
You might try skipping the trisalts. If she actually has gastritis that will only make her stomach more irritated.
G.I. issues can be from lyme itself, but they could also be from bartonella or BLO (bartonella like organisms) which is another coinfection many lyme patients have.
I would suggest reading up on leaky gut syndrome. This can be caused from parasites or candida overgrowth or food allergies or many other causes. But the stomach needs to be healed to cut down on overall body inflammation and help with nutrient absorption.
There are many different herbs and protocols which can help heal the G.I. tract. DGL (deglycerized licorice) is one of the easiest things to try.
A very bad reaction to doxycycline could indicate the presence of another coinfection such as rocky mountain spotted fever (do not always get the rash) or another species of rickettsia or ehrlichia or anaplasma. That is actually one of the reasons doxy is the first choice -- it treats multiple infections.
My personal opinion is that healing the gut is a very high priority and your second priority is pinpointing as many of the infections as possible. Keep notes regarding symptoms and responses to meds and supplements. Educate yourself and don't be afraid to ask your doc questions about treatment.
It is very unusual to have only lyme without at least 1 or 2 or even more coinfections. And the longer a person has been sick the more likely that G.I. parasites and viral issues will be an issue. Lyme and babesia and bartonella all suppress the immune system.
Gluten intolerance may be a factor -- one does not have to have actual celiac disease to be unable to process wheat correctly. And lactose or casein (another milk protein) intolerance could be another possibility. These will not show as true food allergies on testing.
A G.I. panel from the lab DiagnosTechs might be a good idea. I feel that that is a better test plus it is cheaper than parasite testing from Genova Diagnostics (the old Great Smokies lab).
There are several options for strengthening the immune system. But for lyme patients that can backfire and cause autoimmune issues or very severe herxes.
You and your son could try transfer factor or LDN (low dose naltrexone) or Herb Pharm brand elecuthero tincture (see Buhner doses) and see how you respond. If any of those help you then your daughter might also benefit. Having similar genetics should be useful if guessing how various family memebers would respond to the same treatment.
B12 shots are pretty cheap and there is little risk with those.
As someone else mentioned nutritional IV's can get expensive. IV glutathione might actually be more beneficial for your daughter as a detox agent, but the goal would be to take the needed supplements to help the body increase production of glutathione if the IV helps.
Your daughter is lucky to have you looking out for her.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
P.S. If you have not read it, there is a very good article called "Bell's Palsy of the Gut" which explains many of the possibilites as to what could be going on from a G.I. perspective. A google search should help you locate the article.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Treehousemom, I am so sorry your daughter is so sick ,and that you have to see your child suffer. I am the one that is sick in my family, and I would certainly take the illness myself if it meant my children did not have to suffer. I can only imagine how hard that would be.
I put it in the tub with as hot of water as I can handle. Then soak for 20 minutes. I had to build up to the full time, starting about 10 minutes, and building up to 20. My LLMD recommends every other day, but I cannot really afford that, so I alternate between mud and epsom baths, which seem to be less intense than the mud baths.
The other one is castor oil packs. You use organic wool flannel cloth soaked in organic castor oil. Have her lie down, with garbage bag and a towel under her, and place the castor oil soaked flannel on her liver, and place a hot water bottle over the flannel. Then have her lie there for 45 minutes, again working up to the full time.
Both of these were taught to me by my LLMD, and have helped out of many herxes. Also, not sure if anyone mentioned this or not, but I also take activated charcoal when I am having my worst herx. You have to space the charcoal 2 hours either side from any other medications or supplements because it will bind everything. Charcoal has pulled me right out of some major herxes. I would be so sick and in agonizing pain that I would be writhing on the floor, unable to talk or stand, take 8 charcoal, and within an hour or so, be able to get off the floor, into bed, and sleep. I am not sure what dosage for your daughter, but you might want to ask her doctor.
I have been treating since January, and it has taken me many trial and errors to find a good antibiotic match for me. My doctor is not afraid to treat aggressively, and either am I, so I have had my fair share of massive herxes. Sometimes I could push through, but other times I had to slow down, or stop completely.
Last month I started IV antibiotics. The one thing that is different this time is that we are pulsing it. 4 days a week taking the medication, then 3 days without. As soon as I start to herx, at day 3, then my regiment is over for the week, and my herx subsides, without getting very bad in the first lace. Maybe ask your doctor if this is a possibility for her. It has made all the difference for me being able to bounce back and to rest, instead of a never ending herx. This summer was one, very long herx. It was so taxing, but I am not getting the same reaction to the pulse therapy.
Anyways, those are my thoughts. Good luck to you and your family. Be sure to take care of yourself. If you get run down, the Lyme can sneak up on you. I have been infected for over 14 years, and my symptoms would come and go for years. And then my baby decided she was not going to sleep anymore. She slept for 20 - 30 minutes at a time, for 4 months. I was so sleep deprived that most days I was unfit to drive a car. Because I was so exhausted, my body was no longer able to keep the Lyme in check, and I quickly became very sick, and within one year I was bedbound, fighting for my life. My case is extreme, but I just want to remind you of the importance of looking after yourself amidst caring for your sick children. You will be no good to them if you get too sick to get out of bed.
And one more thing, I have heard that Diflucan can be very hard to tolerate and the die off from it can be quite disabling. I know of a few people who have taken it, and it was very good for them in the long run, but it was a very bumpy road. Have patience, fighting Lyme is a long distance course, and not a sprint.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
In addition to all the ideas above, consider removing gluten from her diet. Not just taking the bun off her hamburger, but really putting her in a strict gluten-free diet (which means her food would never, ever touch gluten).
If gluten is one of her issues, it could take 3-9 months to resolve, BUT some people get significant relief from a gluten-free diet.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
Thanks you all!! Bea--wow--great info! THANK YOU!! I will check into the clay. We have just found charcoal. . . We did stop the Diflucan, it seemed to make her even more nauseous. Guess it's back to the Nystatin.
Garden--we did a strict gluten-free diet for 3 months. She did still have rice bread and flour--some say that still has traces of gluten. . . But we avoided all sources of gluten that we knew. She swears it did not make a difference. I don't know--all I have to go by is what she says and what I observe. Who knows...
Posts: 63 | From north Texas | Registered: Apr 2011
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Woops--Searching for truth--you were the one that mentioned the clay and charcoal!! Thank you!! And thank you also for the reminder about taking care of myself. I probably needed the reminder. . . .
Posts: 63 | From north Texas | Registered: Apr 2011
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