Help for our 21 year old son...

Hello! I am new here, but not new to Lyme. I got Lyme in 1999, which enabled us to recognize the symptoms in our son in August of 2013. His main remaining symptom has been an awful headache 24/7and a stiff neck. He has been under the treatment of a LLD since early on but just got a port and started IV meds 3 weeks ago after Columbia Presbyterian's labs showed positive bands on the Western Blot and a positive anaplasma phagocytophilum. He is being treated by our LLD with 400 mgs of Doxycycline (for the anaplasma) once a day and 2 grams of rocephin twice a day.

His headache has gotten worse which we hope is a herx (he is detoxing and taking gall bladder protection.) Concern is that this could be a rebound headache from pain meds (which he totally stopped in January, but has taken some weaker ones recently due to pain of port and headache) At this point we are just trusting that it really is caused by Lyme.

Any thoughts on how long this might take to start to work? He is doing this at college and is really struggling. He's really driven to keep on going, but is getting weary.

Does this dosage sound high to anyone?

Thank you.

Linda

Thank you so much for posting!

We went to the second opinion Lyme clinic at Columbia with the blessings of our LLD. They did extensive testing which he needed. They follow CDC guidelines....so were basically just good for the testing. He had Lyme positive Western Blot bands but not enough for CDC diagnosis. He has done the Bohner protocol, lots of orals antibiotics, bicillon injections.

Now he is doing IV doxy and rocephin....detox drops, liver detox, probiotics, good supplements including immune system boosters

He was on heavy duty pain meds....time release and short acting. He took himself off in January, worried about rebound headaches. Since going on IV, pain has gotten much worse and he is taking 2 Percocet a day.

Thank you for the help....as for so many, this is a nightmare.

Hi Vitamom,

Try not to stress! I have had bad headaches and a stiff neck, among other symptoms. I have been taking 400 mgs of doxy a day. I take 200 in the morning and 200 at night with meals. Doxy is hard on the stomach. I had a really hard time getting used to it, but I'm happy I hung in there. It has helped me.

My headaches and stiff neck have improved. I still have them, but they are getting better. The doxy did aggravate these symptoms at first due to herxing. It took a while to improve. It just takes time.

I have not taken Rocephin. I can't comment directly on that. I'm taking an oral in the same class. I really like it so far. It is supposed to be good for Neuro lyme.

Hang in there! Things will get better for your son!

I did IV rocephin with IV clindamycin and it was a great combo. I used to get awful headaches while herxing from these but now seldom get them. Tell him to hang in there he should feel better soon.

Welcome. My son is on meds, oral, 10 months. 400 Doxy, 150 Rifampin, detoxes and herbs and cleanses... he is all psch. and it has been a very difficult year, well 2 years, took awhile to figure it out.

Sounds like herxing, but I know it must be scary for all of you.

Always here if you need a shoulder.

My older son, 22 also has lyme, but is symptom free. He's on a life protocol to keep it away...

Prayers for you all.

Jimbo,

You sure have a lot going on...glad you have friends to help you out! Your mom is lucky to have you! Thank you for the positive words for my son....I will pass them on and encourage him to visit here! How are you managing with school? We got accommodations for our son that have really helped...extra time for assignments and testing and flexible attendance.

When's your birthday in June...our son's in June 7th!

Take care...blessings!!

it is a good day Traveler! It's funny too that his sweet girlfriend was also born on June 7th...a year later!

Vitamom,

Haha, well my birthday is June 1.

School has pretty been tough. For these past two years I have been having all of these symptoms but I had no clue what was causing them. I just assumed that I wasn't getting enough sleep, ect. I was a teenager, so I thought it was maybe something like that. I also have ADHD and have been on medicine since I was little, which has helped me incredibly. I thus thought the brain fog had something to do with my ADHD medicine no longer working, as I find the brain fog kind of similar to how I felt without my medicine with regards to inability to concentrate and so forth. We tried switching my meds and changing my dose to no avail. Thus, I never really asked for special circumstances because I wouldn't have known what to tell them I had. I didn't find out it was Lyme until about two months ago.

So yeah, I have just been trudging on. My advisor and coach are the only ones I have really made aware of it. Grades are good, but it just takes a ridiculous amount of willpower to get things done. I do have all of my classes stacked on Mon, Wed, Fri which gives me Tuesday and Thursday off, which has helped a lot. If I had classes five days a week, I honestly don't think I would be doing so well right now. Due to financial reasons, I want to try, and am on track, to graduate in three years, which certainly hasn't helped things from a workload perspective. I pretty much have the feeling that if I was able to get through this past year of school with this brain fog and without my ADHD meds (they don't mix well with the Lyme, I get some bad side effects), I am pretty confident I can complete anything. I am beyond ready for summer though and to just get healthy. The motivation of helping my mother does help me to push through when it gets tough though.

All of that said, I feel the worst of all of this is behind me and I also feel rather blessed that this occurred. I have conquered many other demons this past two years and this Lyme is really the only thing left. As a result of Lyme, not only have I been forced to grow as a person but it also set me up for some incredible opportunities that I would not have had otherwise. All that is left is to get healthy.

Post Edited (JimboThunder) : 4/1/2015 1:34:26 PM (GMT-6)

Traveler,

It is pretty cool...seems to confirm that they were "made for each other.":)

Very wonderful, Vitamom!!