I'm new to this forum so let me tell you alittle about my son (19). He tested positive for all bands in 12/09. Saw Dr. F in NJ in Feb. Says worst case she's ever seen. He's been on oral abx and finally put on IV 4/10. He's been on daily IV 1 gram rocephrin since then. He has only neurological lyme, no physical that we're aware of. He completely confused, lost, zombie like, gets lost in the kitchen. We ask how he's feeling but he just says "I'm good". Saw doc last week and since he's no better, alittle worse each month, doc suggested taking him off ALL meds to "see what happens". Doc feels maybe he has too many toxins in him and needs some time to get rid of them.
He's only been off for 4 days and already acting worse.
I've read that people should be on the IV for at least 4 months before they see a change, is this so?
Has anyone else ever had lyme like this?
Any help or suggestions would be greatly appreciated. thanks
Posts: 158 | From NJ | Registered: Jul 2010
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posted
My friend's husband was about your son's age when his parents figured out he had lyme. They said one day he started talking to trees and that was his only symptom...no physical pain. He was on 1 year of IV antibiotics and is fine to this day, except he was brilliant and lost his photgraphic memory from lyme. Otherwise he is perfect. This was years ago.
I'm sorry, I can't advise what to do about your son's med situation, but wanted to let you know that I knew of a similar case.
Posts: 618 | From NC | Registered: Oct 2009
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posted
I am also 19 with neurolyme. It's been very difficult as a university student, but I was never quite as bad as your son and have been able to continue on, albeit as a much less productive version of my former self. These are my thoughts about how to reduce herx symptoms through continued treatment:
1. Sounds like neurotoxin build up is a serious issue. I would definitely be sure to have milk thistle in place, as well as b-12 vitamins if not already
2. Try having him do a no-yeast or seriously reduced yeast diet high in protein and whole grains. This has helped me reduce my neuro symptoms. Also I would try lemon water through a straw, sipped throughout the day. For whatever reason - also reduces my symptoms.
3. Add in both anti-microbial herbs and detoxifying herbs. I might suggest reading about buhner's stuff. You could do regular supplementation with burbur, or just use it during the worst neuroherxes. I've found nutramedix's cumanda to have great brain penetration, but it's damn expensive. I am of the mindset that you cannot do monotherapy with neuro-lyme, but I am not a doctor.
4. Consider asking your doctor about diflucan at some point. It has helped me reduce neurosymptoms and yeast will likely be a concern with your son at some point. Also has great brain penetration.
5. Toxin binders might not be a bad idea. plenty on this board about these if you search around. i've personally just focused on detoxification instead of binding because it is relatively simple
Good luck. It's tough to get hit with something this debilitating at this age. he will make it through and get better, but it will take time.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Some are so neuro they do not have a lot of pain until the nerves are treated. It could come later.
I agree with the detox. I would also try something to prevent the yeasts.
And a binder is not a bad idea. Some are trying cholestyramine to pull the bad stuff out.
You might try a pinch of Coconut oil to start hitting any virus' he may have and ramp up to tolerated.
You might also consider parasites---I just told my doctor to treat me.
I know its hard to soak in Epsoms with IV but any will help.
If he is very neuro though watch out for too hot water... Some of us do not feel just how hot it really is when we are neuro.
When I first started treating---I could not get the water hot enough...Now I like it normal temp, or cooler on hot days.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I'd call the doc and tell her what is going on.
Other people have had lyme like this--where their symptoms are just neurological and not physical. But, over time, the neurological can lead to physical symptoms. For example, extreme muscle weakness, strange sensations and pains, etc.
I am also surprised that she would take him off of IV so soon and for the reason given.
If you would like names of some other docs, just let me know.
I got rid of lyme, babesiosis, and bartonella by going to a doctor who follows the Burrascano lyme treatment guidelines.
I send my friends to a doc who follows Burrascano also. They have all gotten rid of their diseases too. So, I believe in the Burrascano protocol. I don't think the Burrascano protocol would say to take him off of IV meds at this point.
If you have never read his lyme treatment guidelines, they are here:
On p. 16, he talks about using IV Rocephin (ceftriaxone):
"Treatment with ceftriaxone is dosed at 4 grams daily- given either as 2 grams IV twice daily, or 4 grams slowly once a day, four days in a row each week, usually for 14 or more weeks. Such a regimen is not only more effective in the Chronic Lyme patient, but regular interruptions in treatment lessen the potential complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis. Hence a more effective, safer regimen that by virtue of the treatment breaks, is less costly and affords the patient a more acceptable lifestyle. IV access with a heparin lock becomes possible (and preferred)."
Notice he talks about 14 weeks minimum of treatment. Also, notice the much higher dosage compared to what your son is taking.
I and my friends all got well on orals, so I have no personal experience to share with you. Just refer you to the Burrascano guidelines.
Posts: 9931 | From Maryland | Registered: Dec 2007
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thanks to everyone for responding. I think its time for a new doc, does anyone know of one in NJ. I emailed the doc about our concerns and her reply was to put him back on the rocephrin. He was on 2mg but now down to 1mg because of raised white blood cell count, anything I can give to help that? Also what is a binder? His other meds were/are minoclycline 100mg daily and tendamax (don't know spelling) 1000 mg. daily. I do have him on supplements but will add some new ones now. Again thank you all for your help.
Posts: 158 | From NJ | Registered: Jul 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
How about Dr. R in Manhattan?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
I am seeing Dr J and Dr K in CT for my daughter (15 yrs old) suffering from Lyme, co inf + Neuro symptoms. She got it 5 yrs ago and is on wheelchair with cognitive issues. She improved tremendously after IV Rocephin which was administered to her twice in initial 3 years - 4 weeks, 2gms twice daily ...so your son, i guess is taking inadequate dosage but then we are not doctors but our experience says so as per above. G' Luck with your son and must see a good LLMD
Posts: 25 | From CT, USA | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
He was on 2mg but now down to 1mg because of raised white blood cell count
I would come more near understanding the withdrawl if his count went low---possible meaning you were hitting it too hard...
Or they suspect a virus is in play. That you don't want..
Anyone?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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An elevated white blood cell count is typically an indicator that the body is battling an infection. I don't see why that should be a reason to reduced the dose of Rocephin. If the liver function tests start going up, then that's a different thing. You don't seem to have any meds for Babesia. It would be a good idea to add some herbs or meds that hit Babs as well.
I used to relapse really quickly after stopping an antibiotic. It turns out I had Babs, but was only treating for Bb.
Posts: 975 | From California | Registered: Apr 2007
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Remember to Smile
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posted
Dear frikfrak, I think you've gotten a lot of helpful input from members posts prior to mine. Just adding a few notes:
Are you aware of the male Dr F down the shore in NJ? He is well-informed and very current on Lyme & co-infections.
You may wish to research and consider supplementation with the essential amino acid L-Lysine which is helpful for fighting viruses. Dosing is based on body weight, but should be at least 1,500 mg/day. L-lysine should be taken on an empty stomach along with Vit C and 50 mg VitB6 to improve absorption.
For yrs I'd take 1,000 mg L-Lysine at night to keep cold sores at bay. Several friends in Jersey who are plagued by cold sores but "keep forgetting" to take L-Lysine would remark on how I didn't get cold sores anymore. They're caused by Herpes simplex 1, a virus.
Now I take 1,000 mg 3x/day on empty stomach. Many Lyme sufferers have latent viral infections in addition to the spirochetes.
Caution: Don't take L-lysine continuously without a break because it can affect the arganine balance. I stop for a couple wks every 6 mons.
I also agree that it'd be best to get your son on a Candida control diet asap. Food allergies and yeast overgrowth could be making everything harder for him.
Please be aware that if one member of a household has Lyme disease, then all members of the household should be evaluated by a LLMD for Lyme disease & co-infections.
You're in my prayers. Let us know how you're doing. Smile
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thank you all for your responses. I have made another appt. with another LLMD for second opinion and yes, sorry. low WBC, not high. Dr. F down the shore, not aware of him.
Posts: 158 | From NJ | Registered: Jul 2010
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posted
Well, I have to agree with nevagiveup. I think 1gm of rocephin daily is an inadequate dose. The standard dose was 2gm daily...but that has since changed to now 2gm twice daily 4 days in a row each week. Basically your son is getting 25-50% of the therapeutic dose for lyme.
Dr B says doses need to be pushed as tolerated.
Posts: 747 | From Utah | Registered: Apr 2010
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