Life After Lyme

[lyme_mom]

I haven't posted in a while because we have been well for so long that life is very busy with stuff that has nothing to do with illness or lyme. For those of you who are in the middle of this nightmare or just beginning it I want you to have hope that you can get beyond this and get well. We completed our treatment in August of 2010 and I didn't want to post an update then because I wanted to see how things went before posting. I must admit that I had trouble believing we were really done with lyme at the time. It has now been almost 2.5 years so I thought I should post an update that we are doing well and have not had symptoms or antibiotics since we completed treatment. We had a very hard time with lyme and my son and I were particularly sick with it but we had faith in our llmds and we got well. We were both treated for just over 2 years. At times it was unclear whether we were on the right track and even 18 months into my son's treatment he seemed as sick as ever. That was when I heard about emf testing and discovered that he was sleeping in a horrible location emf -wise, a virtual lyme incubator with high frequency all night long. Six months later his treatment was over and I don't know whether lowering the emfs helped but I think you need to address this with a very sick child, earlier rather than later. Think of healing as a wheel with many spokes. A number of things can cause stress on the body-emfs, musco-skeletal imbalances, energetic imbalances, food sensitivities, toxicities, nutritional deficiencies, etc. You will find plenty to read about food online but I also think it is worthwhile to find the best pediatric chiropractor or holistic chiropractor and be sure your child is balanced. Chakra balancing or reiki/healing touch are also very worthwhile. To beat lyme you need to help the immune system in every way you can. We also bought a sauna to use for detoxing heavy metals and other stuff- our llmd is an integrative doctor who looks at toxicities and nutritional deficiencies as well. We tested our home with a mold sniffing dog (no mold found fortunately). I have no way of knowing how much any of these things have helped but I think they definitely helped us stay well after completing our treatment. You need to be your own investigator and follow your mother/father instincts. It can be expensive but the right practitioner can make all the difference between staying sick or getting well and staying sick is very costly. Each case is a little different so what worked for us may not be exactly what another patient needs. Above all else you must believe you will be able to get rid of this and do not believe people who say you cannot get rid of lyme. How can someone get well if they believe they will be sick forever? The reason so many don't get rid of lyme is because most doctors have no idea how to properly treat it and the confections. What your mind believes is powerful medicine so think positively about getting well. Look at the lyme (bartonella, babesia,etc.) diagnosis as an opportunity to learn more about wellness and how to stay healthier in the future. I am so thankful to our llmds for having the courage to treat these diseases in spite of the personal risks they expose themselves to. They are real heroes. For all you parents sick with worry about your kids, I've been there, and I think you should make sure you take care of your own health too. After a while you don't even realize how much worry you are carrying. Get a reiki treatment, meditate, do yoga or some other relaxation modality so you can relax a little and stay well to take care of your child. Best of luck to you all and warm wishes, Lyme Mom.

[tpotter]

Thank you so much for the update. I have a few questions:

 

1) How did you know that you were cured from the lyme tx, and could stop?

 

2) Do you still take supplements, chiropractics, reiki, etc?

[lyme_mom]

Thank you so much for the update. I have a few questions:

 

1) How did you know that you were cured from the lyme tx, and could stop?

 

2) Do you still take supplements, chiropractics, reiki, etc?

 

It was my llmd who told me we were done.

 

On a day to day basis I really don't get around to giving my kids supplements nor have I been very good at making sure they eat properly. I was good about this for awhile and was even making them green smoothies everyday for a while but we got so busy I couldnt keep it up. I used to try and limit gluten b/c it is healthier but that has gone out the window too. We are constantly coming and going to games and other activities so it is not possible to fixate on this like I used to when we were sick.

I read labels and don't buy msg products etc so I am not clueless about diet but they eat typical food.

We continue to utilize holistic practitioners mainly through ondamed treatments and chiropractic adjustments. Ondamed is a powerful biofeedback machine that is from Germany. It has been in this country for 12 years and tests the body to see what healing frequencies it needs. It delivers low frequency waves to the body based on what the machine determines is needed. It is used to help cancer patients and is even used to stop smoking. Two visits and you can be cured of smoking, but that is another subject. My son has had about 8 total ondamed treatments (and none in the past six months). I am sure that has been great for his health. We found this great chiropractor who told me that my son was very twisted from a myofacial level (actually we all were a little twisted) and she said this causes stress that could have contributed to his long illness. We saw this chiro about half a dozen times to get untwisted. He had a huge growth spurt after these adjustments, growing six inches in one year! ABout 2 years ago my son was bitten by a tick and had to take a few weeks of doxy. I was thrilled when he did not herx on this. Im not afraid of lyme anymore b/c I know you can get well if u get it.

[RNmom]

This is a really nice follow-up report! Thank you so much for the encouragement... we are at the 2.5 year mark for treatment and almost done as well (Bartonella has made our treatment course longer, I think). So good to read that there is a point in time when Lyme disease will not be so frightening!

[tpotter]

This is a really nice follow-up report! Thank you so much for the encouragement... we are at the 2.5 year mark for treatment and almost done as well (Bartonella has made our treatment course longer, I think). So good to read that there is a point in time when Lyme disease will not be so frightening!

 

 

I, too really appreciate this followup. We are also at our 2.5 year mark, and starting to work down the abx. We are still doing supplements, ART, chiropractics, and I have been doing accupuncture, too (both DS's said it didn't help them, but I actually had a period of feeling 100% for about 2 months until we got hit by an improperly remediated mold job...I'm back to doing the acupuncture.)

 

When your LLMD told you that you were done, did you stop abx cold turkey, or did you ease down. Our LLMD (and I think it might be the same one) is having us eliminate one at a time, which makes me feel a little more secure.

 

Also, did you and your children have anything else besides lyme? Did you have any other co-infections and/or viruses, other bacteria, etc?

[lyme_mom]

This is a really nice follow-up report! Thank you so much for the encouragement... we are at the 2.5 year mark for treatment and almost done as well (Bartonella has made our treatment course longer, I think). So good to read that there is a point in time when Lyme disease will not be so frightening!

 

 

I, too really appreciate this followup. We are also at our 2.5 year mark, and starting to work down the abx. We are still doing supplements, ART, chiropractics, and I have been doing accupuncture, too (both DS's said it didn't help them, but I actually had a period of feeling 100% for about 2 months until we got hit by an improperly remediated mold job...I'm back to doing the acupuncture.)

 

When your LLMD told you that you were done, did you stop abx cold turkey, or did you ease down. Our LLMD (and I think it might be the same one) is having us eliminate one at a time, which makes me feel a little more secure.

 

Also, did you and your children have anything else besides lyme? Did you have any other co-infections and/or viruses, other bacteria, etc?

 

Congratulations on being so close to being done! We stopped treatment all at once as I recall. I think I stopped first and then my son stopped within six weeks. I was very nervous about doing that for my son as I am sure you all are. Its like post traumatic stress and you are afraid the lyme will come flooding back. Its natural after years of monitoring antibiotics every day and symptoms. I was afraid to post that we stopped then b/c I really did not want to post good news only to disappoint everyone if we were still sick. When we first started our lyme treatment I did not know anyone who had gotten rid of a bad case of lyme and it worried me when I read things that suggested you can never get rid of lyme. I later learned that Pamela Weintraub had gotten well and this gave me a lot of hope b/c we all know how sick she was if you have read her book Cure Unknown. In terms of diseases we were likely dealing with all three: lyme, bartonella and babesia but we will never know for sure. My son's lyme was announced when he developed Bell's Palsy in June 2008. He probably had it for at least six months to a year before this and so he was quite ill by the time the palsy developed. I got great advice the first week he was diagnosed and we were at a llmd within six days of his diagnosis. Nonetheless the palsy appeared to be spreading in spite of oral antibiotics and he was put on a picc line. Within a month headaches persisted even with a picc line so he was put on rifampin and this had an immediate positive effect. WIthin four months the palsy was gone and we had consulted with dr j in Connecticut. He told me it would take at least two years and that my son was very sick. He was right about both. We had a local llmd and saw dr j every 5 months. I think i probably had babesia for years and this causesd periodic fatigue that I mistook for the normal fatigue of a mother of three young kids and getting older. I also had some odd symptoms that I did not know were symptoms that years later I recognized as babesia symptoms (a week of intense air hunger and some sore ribs every once in a while). Mepron made me very sick and eventually helped me get well. I think we have been on every lyme/bart/babesia drug there is :-). My llmd told me that my herxing on mepron could have been lyme or babesia so who knows what it was. When I first got air hunger years earlier in 2004 a primary care doctor told me that I had asthma. I was in my early forties with no history of asthma and I suddenly had asthma according to this doctor. It made no sense to me and I did not take steroids as was recommended. The air hunger simply went away. Thats what they say about babesia-you can have it for years and not know it and then you get lyme or something else and you get very sick. Its great you have a chiropractor and acupuncturist. That will really help you stay well!

[rowingmom]

You mentioned addressing EMFs and using sauna. Could you elaborate a little please? Thank you so much for the hope you have given us, lyme mom. DD11 is 1 year, 9 months into treatment. We were going along very well until we added 1 drop of grapefruitseed extract for dental plaque. All heck broke out with itching rash, age regressive behaviour and motor/vocal ticcing. I know there is something I am missing, but am still on the hunt. Thanks again.

[lyme_mom]

You mentioned addressing EMFs and using sauna. Could you elaborate a little please? Thank you so much for the hope you have given us, lyme mom. DD11 is 1 year, 9 months into treatment. We were going along very well until we added 1 drop of grapefruitseed extract for dental plaque. All heck broke out with itching rash, age regressive behaviour and motor/vocal ticcing. I know there is something I am missing, but am still on the hunt. Thanks again.

I am so glad that it can give you hope! I'd be happy to elaborate. Grapefruit seed extract can kill yeast so have you explored a yeast problem? You may want to try some form of energetic testing. It can be very helpfiul in pointing you in a direction you may not have considered and throughout our lyme treatment we had chiros, acupuncturists, naturopaths, etc. who used energetic testing. It was usually very helpful. I learned about emfs from my biological dentist. All of this was foreign to me when my son got diagnosed. First of all I didn't even understand that you need to go to a holistic dentist until my mercury removal with a regular dentist caused me to be very ill. Up until then I wondered why a person needed a holistic dentist. It was the holistic dentist who told me about energetic testing. I mentioned that we were 18 months into my son's treatment and he was still very sick. He asked if I had tested our home for EMFs and I said i had no idea what he was talking about. I almost didnt want to know b/c it seems with lyme that it is one thing after another. He simplified it for me and lent me a meter to use for the weekend. It was a meter from a place in Canada and the device was called a BODY VOLTAGE METER. The device was expensive, about 350 dollars and it indicated that my son was sleeping in a very high emf location. This emf energy was invisible and in the wiring in the walls. First of all I turned the power off to the room and this lowered the levels to acceptable ranges. I got him a flashlight and left the power off. Later I got an electrician to install a switch that allowed us to turn the power off at night and turn it on when light was needed. I have since purchased an inexpensive meter that is not as comprehensive but a good start. You can buy it at less emf.com Its called a gauss meter and this is the description: "This little meter measures the level of ELF magnetic field radiation from power lines, computers, kitchen appliances, and more! The easy to read scale, unique built-in audio signal and auto shut-off make it simple to use and a great way to find hidden sources of ELF frequency magnetic fields." Less emf sells for thirty something. I got mine at radio shack. I have since discussed this testing with less emf and they recommended a second product too that also tests body levels of emf. It was less than 100 dollars so the combination of both meters is what you need to really know if there is something wrong. I plan to buy the second meter. We have the same problem in our new house and its in the same son's bedroom so we moved his bed to the other side of the room. Some really conscientious holistic practitioners turn the power off in their bedrooms at night. I still do not know enough about this technology but I believe it is critical to sleep in a place that is free of high emfs. My son was sleeping in a lyme incubator and we didnt know it. Lyme loves high frequency.

As for the sauna, we bought a Healthmate sauna that is infrared and love it. Our dr had one. Its made in the us and wont off gas. If you want to get one email me and I can tell you more to get you a discount. INFRARED saunas do not get as hot and cause a deeper detox so they are more effective. You can actually read a book for the first 20 mins in an infrared sauna until you start sweating. Then you sweat from every pore in your body. Its a wooden closet that comes in various sizes, smells great with a wooden bench inside. It starts at 2500. Other tent style saunas are available for a lot less but wont last as long. Not only do they detox, they raise your temperature which lyme hates and burn 600 calories an hour just sitting in it. What part of the country do you live in? Hopefully its near a place that offers good options for holistic treatment and lyme treatment.

[Hopeny]

Thank you for your post. I have not dared dream of a Lyme free life. We are at the beginning of year 2 with treatment. Recently I began to have hope that I can switch DD to an all natural routine without abx, or minimal ones, at the end of the summer if things keep going the way they are, I did give thought to will she have to stay on the supplements for the rest of her life?? It's good to know the possibility for complete healing is out there.

[sf_mom]

Great update!! Thrilled to know of your continued success off antibiotics. Hope to get there soon.

[Fixit]

You mentioned addressing EMFs and using sauna. Could you elaborate a little please? Thank you so much for the hope you have given us, lyme mom. DD11 is 1 year, 9 months into treatment. We were going along very well until we added 1 drop of grapefruitseed extract for dental plaque. All heck broke out with itching rash, age regressive behaviour and motor/vocal ticcing. I know there is something I am missing, but am still on the hunt. Thanks again.

 

rowing i just wanted to reply to this as my ds12(13 tomorrow)..had the exact thing happen to him.

i too thought i would try gse for yeast..a couple years ago...

he took 1! drop and 10minutes later all h(*&&^() broke loose. For us they are tics went crazy and the screeching went on for weeks until we treated with vaco....eyes dialted...

don't know if it yeast, but gse is very high in phenols.

who knows with these kids..i have not use gse again....

it is one of those things that i wish another parent would say...

"yes that happend to us, but we continued and in x days/weeks we got to the other side!"

i don't have the strength to hold on through that.

[lyme_mom]

Great update!! Thrilled to know of your continued success off antibiotics. Hope to get there soon.

Hi SF Mom, great to hear from you! Hope you are done soon too!

[lyme_mom]

In a conversation yesterday that evolved from this post I realized that I should mention one other thing I recently learned about-the role that misalignment of the jaw can play with many disorders including OCD and tics. We recently switched from a regular orthodontist to a functional orthodontist who is excellent. He and other functional orthodontists are less interested in straight teeth and more interested in getting the jaw in the right position to support the body. A misalignment of the jaw can cause pain in other parts of the body, stress the autonomic nervous system (in muscle testing make you weak) AND i am learning cause tics and OCD. Another member and I got on this subject and she said that she had heard that many cases of tics are related to the jaw so I asked my functional orthodontist today and he said absolutely this can happen. Regular orthodontists can unknowingly make matters worse when they pull teeth and move the jaw in directions that do not support the face and body. The treatment for these jaw issues are mouthguards that may be covered by insurance. I have been wearing one now for a month and a half and I have noticed that my shoulder no longer gets tight anymore. All my kids are going to have this doctor do their "braces" even though he doesn't use braces per se. Something to think about and follow up on....

[TOaksMom]

In a conversation yesterday that evolved from this post I realized that I should mention one other thing I recently learned about-the role that misalignment of the jaw can play with many disorders including OCD and tics. We recently switched from a regular orthodontist to a functional orthodontist who is excellent. He and other functional orthodontists are less interested in straight teeth and more interested in getting the jaw in the right position to support the body. A misalignment of the jaw can cause pain in other parts of the body, stress the autonomic nervous system (in muscle testing make you weak) AND i am learning cause tics and OCD. Another member and I got on this subject and she said that she had heard that many cases of tics are related to the jaw so I asked my functional orthodontist today and he said absolutely this can happen. Regular orthodontists can unknowingly make matters worse when they pull teeth and move the jaw in directions that do not support the face and body. The treatment for these jaw issues are mouthguards that may be covered by insurance. I have been wearing one now for a month and a half and I have noticed that my shoulder no longer gets tight anymore. All my kids are going to have this doctor do their "braces" even though he doesn't use braces per se. Something to think about and follow up on....

 

This is amazing. We have recently suspected TMJ problems with my DD16. She has had teeth grinding /bruxism at night when she is sleeping since she first got molars. It is the kind that is so loud you can hear it down the hall. I've read recently that bruxism can cause TMJ injury and the TMJ injury can cause movement disorders but was unaware of the OCD aspect which is a very big symptom for her. She got braces when she was 12 and when they came off 2 1/2 years later the ortho gave her a combo mouth guard retainer to help protect her molars and her head tics started a couple months later. The vocal tics started a couple months after that. When putting on her retainers before bed she goes through exorcist type head movements with her arms flapping and legs hopping for up to 30 minutes and after a neurologist saw a video of it with her eyes rolling all the way back she ordered an MRI and EEG for seizures which were negative. She's had the OCD since she was very young and it is now tied in with her fear that if she doesn't wear the retainer mouth guard she'll wear her molars completely down so it is unfortunately a compulsive mandatory nightly ritual to put the retainer on. I've made an appointment with what appears to be a good TMJ dentist and will report back our findings. Maybe this should be a new post/thread? I recently read from MichaelTampa that the Lyme spirochetes love to eat joint tissue and TMJ is a joint. http://www.latitudes.org/forums/index.php?showtopic=18122&st=0&p=143970&hl=tmj&fromsearch=1entry143970 That would explain my DD16's bruxism at such an early age from her congenital Lyme taking up shop in her jaw joint. Though we have also suspected parasites but the tests including the $400 Metametrix GI Effects stool test came back negative. She has never had any jaw pain or molar pain, just the crazy molar grinding. After less than a year she shredded the molar parts of her plastic retainer mouthguards and the ortho cut the molar part off the bottom one and gave her a new big, thick rubber one for the top. I think that made things even worse.

 

Adding a clarification about the word 'mouthguards'. My daughter's mouthguard is a full plastic retainer that looks exactly like custom made teeth bleaching trays that was intended to cover her molars to protect them from grinding as well as to prevent her teeth from shifting. I think the TMJ mouthguard that lymemom is referring to is an orthotic type device that is custom made by a TMJ dentist to correct/fix a problem with your TMJ. There's a lot of info from Drs Sims and Stack about this kind of device like in this article: http://www.tmjstack.com/casereport.pdf

Edited March 1, 2013 by TOaksMom

[lyme_mom]

In a conversation yesterday that evolved from this post I realized that I should mention one other thing I recently learned about-the role that misalignment of the jaw can play with many disorders including OCD and tics. We recently switched from a regular orthodontist to a functional orthodontist who is excellent. He and other functional orthodontists are less interested in straight teeth and more interested in getting the jaw in the right position to support the body. A misalignment of the jaw can cause pain in other parts of the body, stress the autonomic nervous system (in muscle testing make you weak) AND i am learning cause tics and OCD. Another member and I got on this subject and she said that she had heard that many cases of tics are related to the jaw so I asked my functional orthodontist today and he said absolutely this can happen. Regular orthodontists can unknowingly make matters worse when they pull teeth and move the jaw in directions that do not support the face and body. The treatment for these jaw issues are mouthguards that may be covered by insurance. I have been wearing one now for a month and a half and I have noticed that my shoulder no longer gets tight anymore. All my kids are going to have this doctor do their "braces" even though he doesn't use braces per se. Something to think about and follow up on....

 

This is amazing. We have recently suspected TMJ problems with my DD16. She has had teeth grinding /bruxism at night when she is sleeping since she first got molars. It is the kind that is so loud you can hear it down the hall. I've read recently that bruxism can cause TMJ injury and the TMJ injury can cause movement disorders but was unaware of the OCD aspect which is a very big symptom for her. She got braces when she was 12 and when they came off 2 1/2 years later the ortho gave her a combo mouth guard retainer to help protect her molars and her head tics started a couple months later. The vocal tics started a couple months after that. When putting on her retainers before bed she goes through exorcist type head movements with her arms flapping and legs hopping for up to 30 minutes and after a neurologist saw a video of it with her eyes rolling all the way back she ordered an MRI and EEG for seizures which were negative. She's had the OCD since she was very young and it is now tied in with her fear that if she doesn't wear the retainer mouth guard she'll wear her molars completely down so it is unfortunately a compulsive mandatory nightly ritual to put the retainer on. I've made an appointment with what appears to be a good TMJ dentist and will report back our findings. Maybe this should be a new post/thread? I recently read from MichaelTampa that the Lyme spirochetes love to eat joint tissue and TMJ is a joint. http://www.latitudes.org/forums/index.php?showtopic=18122&st=0&p=143970&hl=tmj&fromsearch=1entry143970 That would explain my DD16's bruxism at such an early age from her congenital Lyme taking up shop in her jaw joint. Though we have also suspected parasites but the tests including the $400 Metametrix GI Effects stool test came back negative. She has never had any jaw pain or molar pain, just the crazy molar grinding. After less than a year she shredded the molar parts of her plastic retainer mouthguards and the ortho cut the molar part off the bottom one and gave her a new big, thick rubber one for the top. I think that made things even worse.

 

Adding a clarification about the word 'mouthguards'. My daughter's mouthguard is a full plastic retainer that looks exactly like custom made teeth bleaching trays that was intended to cover her molars to protect them from grinding as well as to prevent her teeth from shifting. I think the TMJ mouthguard that lymemom is referring to is an orthotic type device that is custom made by a TMJ dentist to correct/fix a problem with your TMJ. There's a lot of info from Drs Sims and Stack about this kind of device like in this article: http://www.tmjstack.com/casereport.pdf

That's interesting.My dentist mentioned the connection between TMJ and movement disorders like tics and parkinson. I know someone whose child had tics suddenly at age 12 and he was helped to 95% by a chiropractor. I was wondering if the child had lyme too and he later turned out to have it. If these jaw problems stress the immune system it could go hand in hand with lyme b/c it would make a patient's immune system weaker.

Yes I am talking about custom fitted clear plastic molded retainers also called splints or mandibular devices. They cost several thousand but insurance may cover part of it. Misalignment of the jaw or TMJ can wreak havoc on the body in terms of fatigue, pain, muscle tension, movement disorders and basically upset the autonomic nervous system making a person's immune system less strong. When orthos pull the jaw back or pull teeth they can really cause problems. Whether the jaw is the main cause or a contributor to illness varies from patient to patient but it is sure something worth checking out. You have heard of the bathtub effect -where it isn't one thing that makes a person sick but the sum total of things that causes the water to overflow the tub OR the straw that breaks the camel's already strained back. This is why holistic medicine is so important if you want to get or stay well.

I started wearing one of these devices about 6 weeks ago. The reason I got one is because I had some intermittent lower jaw pain that this orthodontist explained was due to TMJ caused by my midline being off (upper and lower front teeth do not line up). I did not realize I had TMJ. This causes the muscles of the mouth to be pulled and they in turn pull the muscles of the neck and shoulder, all the way down the back and can cause pain anywhere in the body. I assume the effects go in both directions and upwards to the brain as well and may be how it affects some people. I started using this device about 6 weeks ago and it has been adjusted about 4 times, a necessary part of the treatment. The jaw pain went away within days. I got some new pains in my neck that I had not had before but they went away after the orthodontist adjusted the device. All he did was shave a tiny bit off this thing and my neck pain went away instantly. So wild. IF you have ever seen those old fashioned dolls with the rubber bands that hold the head on the doll it felt like one of those bands was too tight after wearing this device. So the ortho muscle tested me and shaved this device a little and the neck pulling went away immediately. It is amazing how shaving a little off this thing has such a HUGE effect. So it does not surprise me at all that the "fix" to your daughters device could make things worse. My neck pain is gone and I feel like the retainer really fits now. I have noticed another major benefit: My right shoulder seems to be relaxed now. My right shoulder would get really knotted periodically and chiropractors would help but it never lasted. My shoulder feels relaxed now after wearing this device so I am hoping this was the key to that problem. Pretty amazing. This should be good for lymphatic drainage too, a necessary thing for good breast health (but that is another thread). May be good to start a new thread on tmj and infection/symptoms.

Edited March 2, 2013 by lyme mom