son doing worse, please, comments welcomed

Hi everyone,

I know, its been awhile. My son seems to be doing worse (well no better), been on IV for 28 days now...no help...he's VERY dazed, confused. Walks around like a zombie. Only seems to have neurological symptoms, doesn't seem to have physical ones. Although if he were feeling pains we wouldn't know. No conversation, just walks in circles or sits and stares. Still seeing Dr. F in north jersey and also seeing Dr. B in Red Bank. Dr. F says worse case she every saw. Should we get 2nd opinion? We just don't know what to do, just wait it out? How long? Any thoughts, please. My husband and I are starting to be afraid to leave him alone but we have no choice, we have to work.
He's on mino (100mg daily) tindomax (1000 mg. daily) rocephin 2 mg. daily. Tested positive for lyme (all bands) and co-infections, off the charts on his blood work, even positive for Rocky Mountain back in 02/10.

don't know what to do. Has anyone else ever heard of someone like this? did they get better?

any help would be appreciated
frikfrak

Hi Jeminij

thank you for posting. He's 19. Your right, I should be patient. He's been on meds since Jan. but only the IV for 1 month. I will try and post more often to update, very sorry...between his illness and everyday life there just doesn't seem to be enough time.
Again, thank you very much for posting and I'm sorry you had to go thru this as well but I'm glad to here your doing better. Gives me hope. This site has helped alot, its good to see the different approaches everyone has to getting better.

One day at a time, right.

Take care

That's all you can do and at times it was one minute at a time. A lot of bad days, but eventually the good days started to happen more than the bad and that is when I knew I was on my way, but it was a very long road. 2 steps forward and 1 step back a lot. He's about the age I was when I started getting sick so I know how hard it is to happen at that age and watch all your friends going out and having fun, but I believe he will get better so just do as much for him as you can. If I didn't have the help of my family I wouldn't have made it so he is very lucky to have you taking good care of him. Lots of rest and give the meds time to work. it will take as long as it needs to and may feel never ending, but it isn't. It's just a terrible battle he has to endure right now, but you are on the right path it

As he starts to get better and stronger I recommend exercise. Even just going for a walk is a good start when he's ready. It helped me maybe more than the medicine, but I had to get to a point where I could do it. I was so weak and frail that I could literally only do 2 minutes on the treadmill at basically a snail's crawl. It felt foollish at the time because how was that going to help me, but it did. 2 minutes lead to 5 minutes to 10 minutes to 20 minutes to 3 years later I was running 3 miles every morning and working out with a personal trainer and in the best shape of my life.

So, it is a journey and we are all different, but it just takes time.

frikandfrak,

I don't have advice, but I can identify with what you say your son is experiencing. When I started on abx, the neuro symptoms greatly increased. The pain I felt was mental - I just couldn't believe what was happening to me, what I had to do to get better and what the possible prognosis might be. I was afraid to take all the abx and afraid not to. I was like a zombie, walking in a daze and staring off all the time. I needed an antidepressant to help me cope.

I got better relatively quickly after starting IV treatment. I did not have a PICC line, but did outpatient treatment twice a week for six weeks. I am doing much better now. I am off abx and the antidepressant, using herbs and homeopathic treatments.

I hope your son starts feeling better very soon.

don't forget about detoxing...especially coffe enemas help me . It a pain killer but even more it clears my brain.

A good coffee enema definitely take away the ADD and fog and depression. My mood changes and I am able to focus.

My son got bit by a lyme tick back in July 1992. We were told to watch for symptoms and then go to the Doc. if that happened. This is the stage where I think an antibiotic should be taken and I only wish we had been advised correctly. Few weeks later he got GI problems and Doc's couldn't find anything wrong. That Dec. migrating pains in his hands and wrists. In April 1993 just after he was given a Yellow Fever shot in order to go to Africa on his honeymoon he got violently ill with heart/chest pain and ended up in emergency. It is thought that the vaccine probably triggered the lyme. Vaccines are loaded with so many toxins that go directly into the blood stream and slowly damage the immune system. More trips to emergency for heart pain. At this point I am now starting to think about the tick bite and lyme and this was presented to the Doc's but he kept testing neg. for lyme. He eventually did test positive. Without the net at that time it was much more difficult to get lyme info. He was finally put on Doxy and got terribly ill. We did not know about the herx's at that time and he should have backed off on the antibiotics to lessen his symptoms. I have never seen a person so ill. Ended up in emergency several more times for heart palp and pain. In the last 17 years I don't remember seeing him normal again. So many pains and trips to Doc.. He got on a good nat. diet, minerals and vit. and filtered water and silver which seemed to help the most. During the first year of lyme I was scared to death that he might die without antibiotics and kept trying to find a way to get more until I read a book in the library that said that a person must have a strong immune system for the antibiotic to work properly and after a long time on them that they begin to work against the body and cause damage. So, he got off all antibiotics until 4 years ago when He almost died with pneumonia and was put on more antibiotics which caused him to have huge herx's again. Docs keep telling him he doesn't have lyme but I know better and the whole puzzle is starting to come together. 1 1/2 years ago terrible pains in feet and pain in the lower stomach and strange depression and sometimes anger (he even mentioned to me that he was not going to live that way and warned me he would be leaving this earth sometime soon even though he has a darling wife and son) so now we are told the Bartonella co-infection is now becoming active. Bart is a very fast replicating bacteria where Lyme is slower replicating but stronger and I am told it usually keeps the Bart and other co-infections in check. Bart apparently is worse than even the lyme. We have been told that most lyme patients do have co-infections along with the lyme. I knew time was running out and several months ago he was put on a very good colloidal silver and after several weeks most of the foot pain and other symptoms disappeared and he began laughing and seemed to be happy again. However, after watching on a microscope how the lyme Spirochete goes into a quick spore when a drop of antibiotic is added to the slide and goes into hiding, I realized that the silver may do the same thing even though it is said that it works on their respiratory system and kills that way. So with antibiotics many lyme spirochetes hide in a spore form until a person stops them and then comes back with a vengeance. Although I guess some actually do get help from them. I then started investigating the coil machine and my son purchased a kit and built one and is now on his second day of using it. He is getting Herx's again and finally he accepts the fact that he does have lyme etc. and seems grateful to think that we may have finally found something that may eventually kill all of them and perhaps he may get his life back.Since he had been on the silver the past 6 weeks (he had been on Samento and other herbs but didn't seem to help) and was feeling quite good before the coil machine I hope that his bacterial load is on the low side and that his herx's won't be too bad. He stopped the silver 5 days ago as we don't want to use it while on the coil machine.I am so worried about all of you with lyme taking so many antibiotics and wonder what damage you may be causing to your body and that is the only reason I am writing this reply in hopes of it helping someone. When our son first came down with lyme, my husband and I attended lyme support meetings. We talked to several people whose kidneys had been damaged by so many antibiotics and needed transplants and even knew several people who died from the disease. It was too depressing and we had nothing to offer so we quit going. My heart goes out to all of you as I know how you are all suffering and want to have your life back. I will try to report back after I know what the coil machine does for our son. If I can be of any help-email is g.falls@hotmail.com.

frikandfrak

Don't underestimate the lyme toxins that might be causing many of his problems. There's a detox bath recipe on the New To Lyme thread on the main page. I would try to get him to do three or more detox baths weekly. Dry skin brush, epsom salt, hydrogen peroxide and grated ginger is all it takes.

Read this! http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/?tag=content;col1

Lyme toxins can cause many symptoms like this. He might have a lot of ammonia in his body that needs to come out. It's definitely worth a try and very cheap to do. I take three detox baths a week and it does wonders for me.

Gary

Hi

Your son will be on mi prayer list as of now,

sounds like the drs are doing everything they can.

If u have good ins urance you might be able to get home help for him,

where did he get tested may I ask?

lisa

Hi all,

I am new to this forum. 

I have been reading many blogs for a month now and decided to join this forum.

My son has been sick for 4yrs now.  After 2 yrs of misdiagnosis, we finally, got a diagnosis for our son in Sept 2009. He just turned 13 last month.  He has been very sick and has been going thru treatment for 9 mos, which includes abx, natural supplements and chinese herbs and Rife machine.  He has shown no improvements and has got worse. His wbc is 2.1 and adrenals are still exausted to name a few things.   

After reading Dr. J's book, beating lyme disease, this makes sense to me.  Also, reading some Gary's blogs have reassured us.  So, our son now has an appointment for the Hansa Center.  We are being optomistic  

 

PacificNW, your son has been sick for four years! That's a good part of his life and takes a huge toll on the family. He's really been through a lot. I'm so, so sorry.

I read Dr. J's book last January and am in the process of re-reading it again. Using Bio-Medicine to treat the whole body really does make sense. And I've seen first hand the results.

Gary and I have heard some very good reports of children being treated at the Hansa Center and getting well. Some have posted on this forum…perhaps you've read them.

Being optimistic makes a big difference!

I'm optimistic with you, along with Godtimistic, and am praying for your son.

Rhonda

PacificNW,

That's great your son has a vision for his future. Wrestling nationwide–Awesome! I used to watch my brother wrestle in high school and then twenty-some years later our son. Whoa, some of those positions they get stuck in. Watching my brother was one thing, but watching my son wrestle, that was a different story, ouch. Our son enjoyed wrestling more than I enjoyed watching him; but of course, I didn't let on as I cheered, and prayed, from the bleachers.

You mentioned before about your son and his adrenals. My adrenals are fatigued and I learned this exercise at the Hansa Center to help stimulate the adrenals naturally.

Perhaps your present doctor has already shared this info. Regardless, I'll do my best to describe the way I do it on myself; another person could do it to me (the doctor did that, at first, showing me how so I could get the hang of it).

For an adult (may need to adjust measurements for a child):

"Massage" your belly about 1 inch above your belly button and about 4 inches apart.

You can use one hand. So if you're right handed--separate your thumb and fingers like you're going to pick up something. Place your thumb to the right of the belly button (one inch up from belly button) and your four fingers to the left of the belly button so that your thumb and fingers are about 4 inches apart.

Massage (almost like you're tickling yourself) with your thumb on your right side and mostly the underside of the middle finger on the left side. Do this about 30 seconds daily.

You can also do this using both hands. Put your fingers, palm side down, in the correct position (1 inch above belly button, 2 inches on either side of the belly button) and mostly using the underside of the middle fingers massage the area.

cindy lou lou,

Thank you for your support.  Gary and Rhonda have given such great support too.

We will be leaving next Sunday.  My son is so excited.  He doesn't know what it's like to feel good anymore.  I am even more excited to see what he will be like when he feels good. 

I will keep an update on how my son does at the Hansa Center.

 

Hi Addsmom!
Welcome to our forum!!! I am really sorry that you have a need to be here, but glad you found us!!
I am sure you will find the people here kind, compassionate, and helpful. There is a lot of info here, as well - both in the thread at the top of the forum titled "New to Lyme? Start here!" and from the members here.

Deejavu used Dr. J's protocol & is well now. You might want to start a new thread with her name in it. I know she would respond, she is very kind & loves to be helpful.

Many different protocols are in use by our members here, so you can ask about & get opinions for many different protocols. I'm going to an Acupuncture Doc that uses herbal, homeopathic, Traditional & Modern Chinese medicine.

May you find peace on your journey to health.