son doing worse, please, comments welcomed

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frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 5/27/2010 9:58 AM (GMT -7)   
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

Jeminij
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Date Joined Dec 2005
Total Posts : 1336
   Posted 5/27/2010 12:39 PM (GMT -7)   
I was like that. I was 23 when I was diagnosed finally (after 3 years of symptoms). When I started medicine I got a whole lot worse. I ended up bedridden. Worst case my Dr. had seen as well at that time. Wasn't sure if I would ever get well. I was mostly neurological as well. I did get weaker from lack of eating and not well enough to get out of bed, but most of that was neuro symptoms. I was on abx for 26 months in total. I didn't start seeing any improvement until 6 months and that was very little, like being able to walk downstairs or out to the mailbox. After a year I was doing better and was able to start to exercise. Once I was able to do that I started to get even better and by the end of 2 years I was about 85% better. I stayed on the meds another few months on an off and became well, but it was a very long road.

I was told I likely got bitten when I was 18, but to this day I have no idea. I went for years sick and a year of strep throat and when I finally got my diagnosis, i too tested positive for all bands. I had major anxiety. I felt like I was on drugs all the time. I did get to a point where I couldn't stay alone, mostly fear and anxiety, but I also was too sick to take care of myself.

I know it is so scary, I am dealing with some relapse symptoms now myself (I am now 35), but he should continue on his medication. My Dr. always told me you have to get worse before you can get better. It is just how this illness works. It is hard to tell yourself that because in most cases when your sick, you take medicine and you feel better. In our cases, you take the medicine and it makes you feel much worse, but it is likely working if this happens.

I am sorry your son (how old is he?) has to go through this. It is so awful. I lost a lot of my 20's to this disease and I wish it never had to happen to any of us. I also don't know why, but from all my experience with this illness and all that I have known to have it and gotten well, men tend to do better than woman. My opinion, but all the men I know have all beaten it and got well.

frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 5/27/2010 1:33 PM (GMT -7)   
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

Scooterscooter
Regular Member


Date Joined Sep 2008
Total Posts : 66
   Posted 5/27/2010 3:07 PM (GMT -7)   
Just to relate my experience...I got very sick after I started antibiotics 4 months before I started feeling like I could even leave my house and then just limited to a tiny bit at a time. When I started IV it took maybe 6 months before I could tell any difference. We are all different with test results and differing symptoms, different experiences. No two of us are the same. But any one of us who is going through this empathizes with you. One day at a time is a good approach.

Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 5/27/2010 3:23 PM (GMT -7)   
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.

bill of md
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/28/2010 9:17 AM (GMT -7)   
 

This is my second post to the site, but I think I understand what is happening.

I am 48 years old, IV treatment for 2 months 2 weeks of 6 month plan. I got some mental clearness after the first week. I had a set back and worried I had lost the battle. I could not write this message at that point. Since that time I have had times where I am clear headed and it can change quickly.

Two days back I got my mind back and have held it. I might be there, but I am not positive.

This might be help for him,

While my family Dr treated me for everything but Lymes, I got the diagnosis of adult ADD. Treatment was Adderall XR and many other medications. Over a two year period med's would stop working and need change. Had to visit a Physiologist for treatment and he finally admitted he did not think I had ADD. The medication tolerance was the give away, but it allowed me to go on with my life while the search went on.

My Dr wrote me the Adderall XR to help while I am in treatment. Once I reach the point I do not need it, it will be stopped.

Dr Gubb told me of young people with ADD and Lyme handling the conditions better than adults. Being a victim of the disease I understand the problem is Zombie.

Ask your Dr to try this, It might jump start him mind and life.

Give him an energy drink and see if he changes at all. It takes some time ot get med's to the best level. In that time you might want to give up, but once it is working you will see more focus and energy to live.


Best of luck.


Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 5/28/2010 11:20 AM (GMT -7)   
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.

bill of md
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/28/2010 4:18 PM (GMT -7)   
would you share the herbal meds that help?
thanks

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 5/28/2010 4:42 PM (GMT -7)   
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.
hep c , lyme
Dad has lyme


Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 5/28/2010 5:04 PM (GMT -7)   
bill of md,

I don't know if you are asking me, but I used the herbs outlined in Buhner's book, Healing Lyme, specifically, cat's claw, andrographis, ginseng and stephania root. Then switched over to Dr. David Jernigan's protocol. Also taking Carnivora for the immune system.

allieann
Regular Member


Date Joined May 2010
Total Posts : 116
   Posted 6/7/2010 11:59 PM (GMT -7)   
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.

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 6/8/2010 9:54 AM (GMT -7)   
My Lyme symptoms have been very neurologically oriented as well. I don't have the aches and pains to the level that most people do.

Lethargy is the enemy of Lyme patients, but it's very hard to overcome. Exercising is the last thing that your son wants to do when he feels like that, but it's one of the best things that he can do. Like the previous poster said, he should start small and work his way up. Walking is a good place to begin, but he won't feel the benefits as much until he does something that will get his heart rate up higher. The increased circulation will help the antibiotics flow through the body and will help flush the toxins from the bacteria die-off. I started with walking - first a few minutes, then 30 minutes, then an hour. I graduated to bicycling. I increased my distance and my speed using a heart monitor to track my effort. Swimming is another good, low-impact exercise. Running is probably the best way to get the heart pumping, but I have a knee problem that I have to resolve before I can do that.

Another important practice is drinking plenty of fluids. Many people don't drink enough throughout the day, even though they may think they do. I recommend tea. It's a great drink with antioxidants that will help your son recover. For herbal tea, rooibos is a great option. If he wants caffeine in the morning to help wake him up, I would suggest some green and black tea. Green tea and black tea both have unique antioxidants that the other doesn't have. Loose leaf tea is much better than the bagged tea you get in the grocery store, which is over-processed and low quality. I get mine from Teavana. I suggest at least 4 cups a day. I think I've gone up as high as 8 cups a day. I think that's it better to drink small amounts throughout the day rather than a larger amounts a few times a day. There is such a thing as drinking too much, so maybe you'll want to consult his doctor to figure out what is appropriate for him. It varies by body size, climate, activity level, etc.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/8/2010 7:42 PM (GMT -7)   
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

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/8/2010 7:58 PM (GMT -7)   
It is one thing for a mom or dad to have Lyme but for one of our children...that's a whole different story when it's your child who is suffering. Wish I could wrap an arm around you and give you hope.

Joining with others in prayer for your precious son for a breakthrough soon. May God continue to give you wisdom as you walk this path to healing for your son. May God's grace be on you and your family.

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 6/8/2010 8:30 PM (GMT -7)   
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

cindy lou hoo
Regular Member


Date Joined Apr 2010
Total Posts : 28
   Posted 6/8/2010 10:05 PM (GMT -7)   

Hi Frikfrac

I was like that for almost a year.  Couldn't think... Brain fog for sure.  Also when there is a big die off of those little buggers it can make your body feel just aweful.  However, since going to the Hansa Center in Kansas, I have learned that it's not just the "die" off that is creating those symptoms, it's the byproduct from the die off.  It leaves amonia in the body which creates those symptoms.  That ammonia can be anywhere, but usually gets bound up in the brain amoung other places, but that can cause brain fog, memory loss, speech retrieval problems, to name a few. 

I spent 2 weeks at the Hansa Center and saw amazing results, not just with myself, but others that were there aswell.  Dr. Jernigan writes a book called "beating Lymes Disease."  There is a protocol in his book than can really help him.  It's a long reader but worth your sons health.

If I can answer anymore questions please let me know

Cindy


PacificNW
New Member


Date Joined Jun 2010
Total Posts : 13
   Posted 6/17/2010 12:58 PM (GMT -7)   
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 smilewinkgrin  
 
 

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 6/17/2010 1:44 PM (GMT -7)   
Welcome to the forum, PacificNW!!
So sorry to hear about your son being so ill. What kind of doc does he see? There are some who need to follow homeopathic therapies - either instead of, or in combination with abx - in order to gain their health back.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/17/2010 8:46 PM (GMT -7)   
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
New Member


Date Joined Jun 2010
Total Posts : 13
   Posted 6/18/2010 7:33 PM (GMT -7)   
Traveler and Daisy,
 
We, currently see a llmd in the pacific nw. He is a chinese med, internal med and naturalpath.  He works closely with Dr. J in connecticut who has treated and cured many children.   
 
Just recently  my son was put on 3 abx at a time and he broke out in hives. We, currently have him off all abx at this time.  He continues to be very thin, pale and fatigued.  He does take a few homeopathics and many many supplements for his immune system and the lyme.  He will continue the rife machine(GB4000) for the time being.
 
My son is very excited to go to the hansa center.  He tells everyone, "I am going to the hansa center to get rid of this lyme disease, so I can wrestle again".  He used to compete nationwide in wrestling.  We will get him there again!
 
 
 
 

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/19/2010 8:17 PM (GMT -7)   
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 hoo
Regular Member


Date Joined Apr 2010
Total Posts : 28
   Posted 6/19/2010 10:52 PM (GMT -7)   

Hello Pacific NW

I am so glad you have decided to take your son there.  He will find relief in just a few short days.  You both will be amazed!  Your going to the right place.  When are you planning to go?  I will pray for your both!  I would love to hear about your visit there... I'm sure others will too.  I'll pray for you both when you go.  Please tell Dr. Jowdy I'm doing great.

I am excited for you... releif is on it's way!

Cindy


PacificNW
New Member


Date Joined Jun 2010
Total Posts : 13
   Posted 6/22/2010 2:17 PM (GMT -7)   
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.
 
 

addsmom
Regular Member


Date Joined Aug 2010
Total Posts : 32
   Posted 8/3/2010 1:15 PM (GMT -7)   
Cindy lou lou,

How has it been after being on Dr. J's protocol?? I am heavily considering it and would love some feedback!
Thanks for your time!

addsmom

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/3/2010 2:45 PM (GMT -7)   
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.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav
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