Help~~ 11 yr. old story from Michigan

RowingMom & Traveler ~~ Thank you so much for your post. I have been up all night thinking about how amazing each one of you is for taking the time out of your busy life to reply to people in need.

I can't believe we live in a country where we can't say a doctors name aloud for fear our government will come down on them for helping people sick and desperate. America seems to have a third world mentality when it comes to wanting people to be better.

For six years, I have been made to feel I am the Munchausen mom and my child is a hypochondriac. Now that we finally have a diagnosis we are told we are still crazy because there is no such thing as chronic Lyme disease. Because of this we can't find a cure that is talked about aloud, and we are forced to whisper doctors names. I cannot believe this is the world we live in. Inspit of everything my husband struggles to pay $20,000 a year for health insurance because we are self-employed. We are financially barely making it every day just as so many other Americans yet are in fear because we are in are 50's without the proper health coverage we could lose everything we one of us got sick!!! However, look where we are now I guess it does not matter.

We sit here every day watching our daughter get sicker and sicker. She is progressing so fast we are worried she might have seizures or wake up in a wheelchair. We live in Michigan, but I will travel to the end of the earth, do any amount of fundraisers I need to do to get her better. The only problem is I'm lost and don't know where to start.

As of September this year she is seeing a doctor in MICHIGAN that has her on 100Mg of doxy per day. Toni's Lyme disease is becoming more aggressive every day. I am beginning to question that antibiotics are the way to treat. But, we also do not have $80,000 to send her to these clinics that promise to cure her.


My Daughters LONG six years:

2009-2010- first grade, Toni started complaining of head and body aches every day. She then started running fevers, unusual rash with swollen lymph nodes in different areas of her body. These symptoms continued for a couple months. Therefore, we took her to children’s hospital. We spent the entire day in ER. They ran several tests, and the only thing they come up with was that her liver enzymes were elevated. She remained sick that entire school year and then seemed like overnight her symptoms disappeared. However, the headaches never seemed to go away after that, and they were now more frequent and intense. Then one day she told me as soon as the car started moving she would instantaneously get a horrific headache. The car sickness is still present six years later.

Fall 2012- all her symptoms started again only this time more problems began to surface. She was now having headaches, pains in her knees and ankles, rashes, a sore throat, heart palpitations, stiff neck swollen lymph nodes, as well as flu-like symptoms. These symptoms went on for eight months. After those eight months, everything seemed great again. We went almost a year symptom-free. However, the headaches, car sickness, and body aches remained every day. Doctor said Toni’s test showed a past positive for Epstein Bar and that it was more than likely recurring.

In 2014, -the same problems showed their face again with a few new symptoms. Now she is seeing black floaters and bright flashing lights when her eyes are closed as well as back pain. We took her to the eye doctor they took a few tests and told me there were not any problems and that the symptoms should go away with time. Her chest cramping was now getting worse. They did an EKG on her said she was fine she needs to drink more water.

Summer (2015)-- Toni's knees are now so painful she could hardly walk without excruciating pain feeling the need for crutches. She is complaining of back pain. Her headaches appeared to become more of a cluster headache with debilitating pain behind her eyes. The bright flashing lights are more intense at night when her eyes are closed. The rash appeared again under her arms this time. This week on Tuesday, Sept. 8th Toni came home and said her body went numb from her neck down. The following day Sept 9th it happened again twice. She now mentions her hands hurt and that she gets a shooting pain in her ear.

Fall (2015)—Toni’s symptoms are increasingly getting worse every day. She now states that her migraine headaches are every day and when she turns her head the room is blurry for a couple of seconds, the cramping in her hands is happening more often, and lately her hips are hurting to the point she is using crutches. Today she woke up with a rash on her torso.

At one time, Toni would have some good days without pain. Although that is no longer true. She is living her life suffering in silence as people look at her and say "Really look at her she's okay." Because in their mind lyme is different than the word cancer, therefore she cannot possibly be as sick as I am describing.

I'm sorry for what you are going through as well.

We live in Canada and had to pay out of pocket to seek help from our LLMD in the US. We paid for everything - Dr's visits, antibiotics, supplements, monthly testing etc. No doctor in Ontario would help in the slightest. We ended up paying the equivalent cost of a university education to get K to 80% improvement from bartonella; but now at least she has the potential to realize that education in her future.

Please don't ruminate on the problems with our (Canada and US) healthcare systems. They are run with only the financial outcome of big corporations (Pharma, Healthcare, Insurance) in mind. They don't care about our problems and never will - you can complain all you want and nothing will change.

All you can do now with your daughter's diagnosis is to move ahead and know that there are valid treatment options for her. Concentrate on her recovery and not the inequities of the system - it wastes too much of your and her precious time. We are lucky to have the alternatives available to us! Move ahead with hope.

If you haven't found an LLMD yet, I would recommend that you purchase Stephen Buhner's books:

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

Natural Treatments for Lyme Coinfections: Anaplasma, Babesia, and Ehrlichia

and read them. If you feel up to it, start low dosages of the bartonella and babesia protocols. Don't try to get to his recommended dosages - they are much too high for someone with high bacterial loads - die-off will be unbearable.

If you don't feel up to it, try to find a good naturopath or herbalist to help. Buhner has a list of herbalists that use his protocols, listed on his facebook page (we consult with Julie McIntyre):

/www.facebook.com/stephen.buhner

He no longer maintains his website and it is becoming out of date.

GreenBlue~~ Thank you for you advice. No our doctor is not open minded. That seems to be the problem. We have however just received word another doctor is willing to take her on as a patient. He uses antibiotic IV therapy. I am not familiar with this type of treatment. I guess we will learn more when we see him.

Please forgive me for not reading your first post in this thread. I started to, but evidently today isn't a day I can deal with those details due to a PTSD type of reaction I can have.

But, I too would encourage you to start your daughter on the herbal protocol when you can. I couldn't handle the treatment with abx - and was quickly tagged with being an abx failure. My body simply couldn't handle the amount of toxins that were created and got so overloaded with them that I developed many very scary and potentially dangerous symptoms. I was very blessed to not have any of the severe heart symptoms though.

Buhner's can safely be used with abx if that's the route you wish to have your daughter go, although I would encourage you to try Buhner's by itself. As you can see by Rowingmom's story, it's able to heal these infections! I too healed my 40 year old infections with herbs only, although I used a lesser known protocol.

And I agree with RowingMom in that now it's time to help your daughter - you can tackle the issues that we face when having these infections later - after she's healed!

Keep asking questions and questioning doctors - that's how we learn and keep our treatment on track!

rowingmom, I wondered if you would be willing to share the data you have from K's experience? You can email me whatever you are willing to share.

Thanks, Kim

Buttercup:
I'm sorry you have to be here, but I'm glad you found us. This is the best place to be in your situation. I have dealt with these infections myself and 3 of my children are affected by it. It will get better, but it takes time and patience--lots of it! There are many knowledgeable people here although Rowingmom and Trav helped me the most--they are very knowledgeable and always find the time to answer my questions. I also purchased Buhner's books and read them. In addition, I can post a doc's name here because he is very vocal--you can find his videos on line. He uses part of Buhner's protocol and I've learned from him a lot. His name is Dr. Klinghardt. They are friends. I believe both of them had/have Lyme.

Do a search on youtube and start listening to Dr. K's videos if you have time, learn as much as you can, and please do not trust regular doctors. I used to listen to him on my smartphone while cooking, cleaning, pretty much any chance I got. I watched all his videos. He talks about the herbs and the bacterial infections as well.

My son started to have seizures, than cluster seizures, he almost died 2 times because he was not able to breath due to not being able to control the liquid in his throat during seizures. We've been to ER, regular drs, neurologists. No help. Don't waste time, start detoxing. There is a link at the top of the page--read it if you didn't already.

I feel Buhner's herbs are safe--except for Motherworth, which didn't work for me and I got wheezing symptoms. This resolved once I stopped taking it. Many of his herbs are food grade. I have used them myself. I make my own tinctures now and I am doing a lot better and also I am saving substantially. You can also email me if you feel I can be of further help. I do not think your daughter is dealing just with lyme. Most likely, another co-infection is contributing to those horrific headaches. My son's headaches were so horrible that he wanted to bang his head on the walls or floors. You did not mention any symptom that my son (now 11 yrs old) didn't have. He is doing better. He can play piano for hours and he is doing online schooling, because the school dealt with his medical conditions very poorly and so did the regular drs. I would start detoxing her SLOWLY, if I were you, until you can decide what treatment plan you want to try. If school becomes too much, put her in an on line school or homeschool her. Do not push her over the edge. Our children are sick and sometimes school becomes too much. With on line schooling, she can work on things at her own pace. It is the best decision I've made. My son got to the point that we had to carry him to the bathroom. He could no longer walk on his own. Once we started treatment, the seizures stopped and he started to improve. Seizure free since December 2014. He used to get 1-4 per month. I feel your daughter may also have Bartonella and/or Babesia. My son tested positive for Bartonella and got the bull's eye rash. How do the rashes look like, exactly? How is she doing in school? Do you notice any attention problems? Do her muscles also hurt or just the joints? Do her ribs hurt? Do the bottom of her feet hurt? Do her fingers hurt?

Hugs to you and your child. Hang in there!

Post Edited (Simela1) : 11/1/2015 1:01:54 AM (GMT-7)

GreenBlue ~~
Thank You! I am going to look into dandelion tea - as well as your suggestion the Cowden's Burbur and Parsley drops.

Simela1 ~~
From the sounds of it your son is no longer suffering from headaches. Is that true? What do you think helped the most in terms of helping to get rid of them?

What is she doing to detox?

There are no fast fixes for any of this. The toxins that are being released from the bacteria are what is driving her symptoms. This will increase when she starts treatments, which is why I encourage people to begin detoxing right away to lower their total toxin load in their body.

You can also have her tested for gene mutations(MTHFR) that can make it really hard for her body to detox.

I really do understand your concerns, as I too had seizures due to the high toxin loads I had and these infections. Detoxing is really the only way to help her soon.

You can use activated charcoal (be sure to keep it 2 hours (before & after) away from all food, supplements, and medications so it doesn't bind to it and usher them out of her body before they get absorbed.

Alka Seltzer Gold is very helpful for many. Here is the ingredients list: labeling.bayercare.com/omr/online/alka-seltzer-gold.pdf There's no aspirin in it, so it's safe.

From there, you can add in oil pulling, dry skin brushing, Epsom salt soaks - although I would highly suggest that you start her off with only foot soaks and only have her stay in one for 7 minutes the first few times. Some people are so overloaded with toxins that even that will set off a herx. The reason is because the Epsom Salts - peroxide combination is really good at moving toxins out of the tissues and into the blood stream - which is when our bodies freak out because it's got an overload of toxins in the blood.

Be sure she drinks as much lemon water as you can get her to, even if you have to sweeten it with some thing like stevia or xylitol. The lemon water actually helps to alkalize the body, which is what the bacteria and viruses that she is dealing with don't like. One word of caution - lemon juice is hard on the enamel of the teeth, so she needs to rinse her mouth good after drinking a glass of lemon water.

Stevia and Xylitol both help kill dental spirochetes, so that's an added bonus.

Make sure her bowels are moving daily. That's a major pathway of detoxing as well and if she's not 'going' daily, those toxins are being reabsorbed.

Have her take milk thistle if she doesn't have a rag weed allergy. Milk thistle not only protects the liver, but helps the liver to flush more toxins out of it.

Traveler~~ since she has only been diagnosed for a little over 2 months I am just learning all the things I should be doing. Our current doctor has not recommended anything else. Therefore, I have taken it upon myself to incorporate the following.
Detox Protocol so far:
**activated charcoal 2 capsules 3 per day when herx
**20 minute bath w/ 1 cup of Epsom salt & baking soda 3x week dry brushing towards the heart before

Simela1 ~~

Sorry. Yes, I saw your posting. However I was trying to answer them in order and it was so late I was not able to get to yours. But, I planned on getting to it first thing this morning :)

Thank you for the information. Unfortunately I started the Epsom salt bath protocol before I came to the board. After Traveler provided her information on detoxing I now know I need to change how I doing things.

I have never heard of propolis But, I did research it and found this. If sounds like something I may want to seriously incorporate after further research. Thanks for the valuable information.

Propolis-- a red or brown resinous substance collected by honeybees from tree buds, used by them to fill crevices and to seal and varnish honeycombs. Natural medicine practitioners use propolis for the relief of various conditions, including inflammations, viral diseases, ulcers, superficial burns or scalds. Propolis is also believed to promote heart health, strengthen the immune system and reduce the chances of cataracts.[14] Old beekeepers recommend a piece of propolis kept in the mouth as a remedy for a sore throat. Propolis lozenges and tinctures can be bought in many countries. Though claims have been made for its use in treating allergies, propolis may cause severe allergic reactions if the user is sensitive to bees or bee products."*

DancingBear~~

Thank You! I am confident with all the valuable information everyone is sharing my daughter will be 100% again.

Hello. I am new to this forum. I have a 17 year daughter who has been diagnosed with Lyme. Our story is very similar to everyone else's ---perfectly healthy and energetic outgoing teenager who suddenly cannot function. After 18 doctors and $20,000 out of pocket we are finally seeing a Lyme literate dr. We started with ceftin for 4 weeks but our general dr. would not prescribe any more because she said that the Lyme should be gone. After seeing the Lyme Doctor, my daughter is now pulsing----amoxicillin and z-pack with flagyl. Her legs are so heavy and weak. She can barely walk. We detox continuously. We did not have the weak legs until the first round of antibiotics. Does anyone have any suggestions? Also I see a lot of posts about using different herbs. Where would I begin with that? Could herbs help speed the process up? Any help would be greatly appreciated.