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Posted 4/6/2011 4:54 PM (GMT -5)
hi all,

its been awahile..let me recap: son (now 20) diagnosed in 12/09, postiive for all bands and RMSF. Saw LLMD for 6 months, got worse. Now with 2nd LLMD since 08/10 and still no better. Been on 400 mg IV doxy since 09/10 and 1000 mg flagyl (just 1 month on flagyl) and still no better. Had to take him off the doxy because he would no longer sit for 4 hrs. to have it done. He laughs constantly, uncontrollably. Only neuro lyme, physically fine (we think). He can't tell us anything, he's been out of it for a year, gets lost in the house, can't leave him alone, ever. He's gone to a medical day care for about 8 months now. My question, what are we (his parents) doing wrong. We do everything the LLMD tells us too, we watch his diet. We are very discouraged, beginning to think my son will never get better.

sorry for rambling

Any thoughts/suggestions would be greatly appreciated.

 

Posted 4/6/2011 8:40 PM (GMT -5)
Hi Frikandfrak,

I'm so sorry to read about your story. That is really heartbreaking. I was wondering if you had tried Rife? I have not and I don't know much about it however, I just ordered a Doug Coil machine. I have read that people get amazing results from it and the lady that owns our local health food store had Lyme and completely recovered with a Rife machine and natural medicines.
Posted 4/6/2011 9:35 PM (GMT -5)
The only thing I can say is try to be patient. Most of us are nowhere near that ill and it takes a LONG time to see results. Has anyone tried to get IV for your son. I will say that I did get worse with treatment which is what the doctors said and only upon taking many many pills and supplements at the same time and detoxing often and its been 24 months that I have started to feel better. and believe me I was still working everyday. Not that it was easy, but your poor son seems to have such a long way to go. Make sure you are detoxing and getting supplements into him. My doctor told me prayer, patience and positive thinking. I will remember you and your son.
Posted 4/7/2011 7:40 AM (GMT -5)
I'm going through the same thing right now. I was on antibiotics for a year then tried herbs and I am still not getting better. I have horrible brainfog and chronic headaches. I don't know how I am going to function in the job market...or even sustain myself. Btw i'm 21
Posted 4/7/2011 7:54 AM (GMT -5)
Seeing Eye, Did you go off antibiotics? Perhaps it wasn't long enough. Have you been tested for coinfections? I had a headache every single day for 3 years and haven't had one in a long time now but I've been on antibiotics for 2 years - at the present, 3 at a time. Are you seeing an LLMD? Stay positive, it takes a long long time but you will get there.
Posted 4/7/2011 10:19 AM (GMT -5)
I personally would ask that he have his co's treated, as well as switching over to a different IV abx.

Sounds to me like he needs something alot more potent that Doxy at this point in time.

You are not doing wrong.  You care for your Son, you have an LLMD..(hopefully it is a "real" LLMD), as we all know there are many out there that are not.

Maybe your Son's case is too complicated for your current LLMD. 

What area of the country are you in?

Posted 4/7/2011 4:10 PM (GMT -5)

Hi frikandfrak,

My son had similar symptoms, all neuro.  He wasn't getting better after 4 yrs. on abx.  We got his methylation pathway checked and he has a mutated gene and a COMT polymorphism.  We took him to a nutritionist who specializes in this using all natural methods as per Dr. Amy Yasko.  He is on a very strict diet and since he can't detox on his own, we have been giving him a mixture of clays, activated charcoal and zeolite and started him on colonics.  The difference has been amazing.  He's coming back!!!

Being able to detox makes such a big difference.  I think this is a big part of the problem for so many who don't get better.  Detoxing is key.  We tried all the IVs, all the natural supplements, but once we found that his whole detoxing pathway was blocked......viola!

If you would like more info, please Email me.

Take Care,

Karen

Posted 4/7/2011 7:42 PM (GMT -5)
Hi,

Thank you all for your posts, I really appreciate it. My sons 1st LLMD is highly respected in the field and so is his current LLMD, both been practicing for over 20 years. Read very good revieiws about both. Will stay with his LLMD, I do like and trust him. He says to think in terms of centimeters, not inches. That it'll take a long time to get him well. I guess, its just very frustrating and heartbreaking.

All-Seeing Eye, I'm very sorry to hear about your ordeal. Being only 21 is rough...I believe my son will come back one day and not remember turning 20 or maybe even 21. Are you still on abx, IV? Are you seeing an LLMD, hope so. Good Luck and God Bless

about detoxing, not quite sure how to help with that. We only give hiim these detox drops and cat's claw drops the doc had us get. What else can we do? He won't sit in a tub so detox baths are out. Was thinking of getting chorella (not sure of the spelling) should I?

I will keep all of you in my prayers.

 

Post Edited (frikandfrak) : 4/7/2011 6:46:46 PM (GMT-6)

Posted 4/7/2011 10:28 PM (GMT -5)
My son was infected, in third grade, we had a lyme literate dr, awesome physician. Now at 22 it has come back. He is in his senior year at college and 4 weeks until graduation. He quit his job and sleeps and tries to study, his mind is fuzzy, I believe fuzzy is the word he used, Your son will be in my prayers for a total complete healing.
Posted 4/9/2011 9:49 AM (GMT -5)
Frikandfrak,
I am so sorry to hear of you & your son's ordeal! My heart broke as I was reading your post.

I don't have any suggestions, as abx didn't work for me, they just made my neuro symptoms 10 times worse, which is why I switch treatment types.

Healing thoughts and prayers for you and your family.
Trav
Posted 3/17/2012 8:14 AM (GMT -5)
I think your son could have a co-infection like bartonella. PLEASE get him checked for co-infections that almost ALWAYS come with Lyme

Here is a Chart of co-infection symptoms:
http://www.lyme-symptoms.com/LymeCoinfectionChart.html

As you can see Bartonella causes A LOT of mental disturbances. Everyone's brain is affected differently I've heard Babesia can do the same.

Please check for these co-infections. I'll keep your son in my prayers. I'm sure he will recover. Just be patient. Your are doing a great job.

Bartonella mental disturbances:

-severe rage, -agitation
-anxiety,
-easily upset - easily angered. -confusion
-feeling disconnected
-overly sensitive or critical
- sometimes extreme fear and panic
- morbid thoughts
-homicidal feelings
-severe mood swings
- outbursts -antisocial behavior
-decreased coping
- irritability
- all psychiatric, -aggression, -impulsively
-panic attacks
-violent behavior
-Combative behavior
-Substance abuse disorders
- pain from sound -depression.
Posted 3/17/2012 9:02 AM (GMT -5)
the neuro symptoms particularly the mania can also be ammonia related from die offs of all bugs-yeast, putrification in gut..the jernigan protocol and homeopathics or whatever they are called are i believe designed particularly for this

i am rifing on a very diverse et of frequencies for herpes which is said to include everythng from candida to mono to measels, chicken and small pox, shingles, rubella, cold sores. epsetin barr, variola, stomatosis and pyorrhea, staph, strep.

its an almost 3 hour protocol and causing quite significant neuro issues, stiff neck, eye issues.the herxing has subsided from a month ago..i do 5 days on and 2 off
Posted 3/17/2012 10:13 AM (GMT -5)
It breaks my heart for you and your son too. I have neuro Lyme, but I have a lot of physical pain too. I've had several symptoms since I was about 10 years old, maybe younger. I would complain of my joints hurting, ADD...was told I had "growing pains" and ADD.

I am just now getting treatment and I tested positive 4 years ago. I'm 30. I pray your son gets better soon. Poor baby.
Posted 3/19/2012 3:03 AM (GMT -5)
So very sorry to hear that your son is not responding to treatment. I will pray for him. I hope the treatment he needs you will find in soon time. I too know what neuro lymes feels like. I dont want to give out any wrong advice but I will explain what worked for me. I was on 2 months of doxy before i realized it wasnt working. The doctor put me on amoxicillin and erythromycin for 3 months. I was able to leave the house again without getting lost! I am now off of erythromycin but still on amoxicillin. I also make smoothies with every fresh fruit I can find and drink vitamin fruit drinks and detox berry drinks with lots of water. I believe the carrot bolthouse farms really did me some good. Also I take hot showers. Not too long or short. Around 30 min usually works for me. Another thing the doctors probably spoke about was to watch the antibiotics when he lies down... Again im not sure if this goes for everybody but for me I must wait a while to lay down when antibiotics are taken orally because they caused really bad acid reflux. So bad that I burnt my throat and couldnt swallow. If your son is taking an oral antibiotics and has a problem communicating, this possibly could effect him in some way. Maybe ask his doctor about it. Also have been drinking coconut and pinaple juice. Again I don't know what advise to give exactly. Please don't think that your are doing anything wrong when you are doing the very best that you can because I do believe that it takes time and in time with the right treatment I not only hope but believe in my heart that his health will florish.
Posted 3/19/2012 7:50 AM (GMT -5)
@my2cuties,

I think you might find that sitting upright will help your acid reflux better than lying down!

It works best for me if I eat, wait 15 mins, then take the medicine and sit up in a recliner for 20 mins while the medicine settles. If I keep moving around, inevitably I bend over and make things worse, and sitting at a table or desk usually means you are leaning forward and squishing your stomach.

The instructions on my meds specifically say not to lie down after taking the meds. I thought that meant it was okay to go about my business ... I went through a couple months of acid reflux before I figured out what made it better!
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