Haven't been on in a while. Did take my son to new doc, Dr. S, put him on 400 mg. daily of doxy thru IV. We're 18 days in and actually worse -- this ever happen to anyone? Also still seeing Dr. F, I do believe she cares and is trying. Actually prescribed same med on visit. Just not sure what to do anymore. My husband and I are VERY afraid, my son just keeps getting worse. He's truly a walking zombie, doesn't talk, justs stares. In last post I wrote how his WBC was low, its fine now, he was on Abilify and we took him off because it didn't seem to do anything for him and his WBC has been fine since. Now have new med to try, Aplenzin, anyone ever take this? The doc is hoping it brings him back. I do have a request from one member who emailed me, said he was seeing Dr. F also and she had stuck with him thru it. Apparently he too was very bad, could only cry as times, couldn't talk either. If this person reads this post can you PLEASE email me again, I have some questions to ask. OK, sorry for the long message....just heartbroken watching my son go thru this and beginning to wonder if he'll come back to us, and if so, when?
posted
Six is right. Your son sounds like he is herxing. It's a very rough thing to go through. Be sure to stay in contact with the dr in case she wants him to stop the meds for a day or two to give him a break.
Lyme is no picnic.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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It describes the herx as beginning at week 4, but this would be the beginning of the week, which would be day 22. So, at day 18 of treatment, your son is close to the four week mark. I also found that sometimes a herx can occur in the first 3 days also.
You might want to read that whole file when you have time.
[ 09-15-2010, 08:46 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
thank you all for responding but I should have been more thorough. My son has been going thru this since 12/09. Been on multiple orals meds than IV 2mg daily of rocephin for 3 months. Now switched to 400 mg. daily of doxy 18 days ago for probably another 3 months. He has progressively gotten worse since day 1. Since the beginning I understand that you get worse before getting better but my son has ONY gotten worse since this whole thing started, that is what I do not understand. His lyme is only mental, no physical whatsoever. We cannot ask how he's feeling because he doesn't speak, completely lost, confused. If anyone else has gone thru this like this I would love to hear from you. Seeing 2 top notch LLMD docs and neither seems hopeful either, says they too don't understand.
Posts: 158 | From NJ | Registered: Jul 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
how old is your son?
have coinfections been considered?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
My first thought was also bartonella. Hubby has had primarily G.I. and neuro symptoms. The first few years he was sick he was very quiet and just not himself.
The first time he tried rifampin it seemed to wake up his brain. He became more alert and talkative. He could only tolerate 20 pills in 20 days back then. Initially he was almost hyper from the med, but he has stayed much more mentally focused ever since first trying that med.
If your son has not had a brain SPECT scan then I would suggest that test. It could give you a better idea of what is going on.
In regard to the Doxy -- when hubby first took that medicine orally he only needed 200 mg daily to reach therapeutic levels. I would have your son tested -- peak and trough blood levels to see if he may be on too high of a dose of doxy.
When hubby tried IV Doxy in 2007 he was in the hospital and at that time it aggravated his tremors, myoclonus and dystonia. We had to stop it after a few days. What got him out of his crisis at that time was oral Levaquin.
Does your son also have ehrlichia? Or rocky mountain spotted fever? Doxy also treats those and it might cause too great of a herx reaction if he has one of those coinfections.
Have you tried something like IV glutathione?
Are his liver enzymes ok? Any routine bloodwork which is abnormal -- WBC, RBC etc??
One of the coinfections may need to be treated right now rather than the Lyme or in addition to the lyme.
Don't know what if any supplements you are using. Fish oil, turmeric, pycnogenol (pine bark extract), and vitamin C would probably all be of benefit.
Has he been tested for hypercoagulation or tried something like Wobenzyme or Lumbrokinase?
It sounds like there is a missing piece of the puzzle to me.
Has he been tested for B12, folic acid, vitamin D?
What about detox issues? Has he tried questran (cholestyramine)? Methylation issues is another possibility.
I would also add either lecithin (cheaper) or phosphatidylcholine supplements. Will help liver function and also memory.
This is not medical advice, just some ideas based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I know you probably don't want to add any more meds right now.. but a parasite treatment can make a huge difference.
Please consider something like Purge Parasitis or Parastroy..
posted
i've had absolutely horrifying cognitive issues.... i was given ivermectin for a parasite in the beginning....so parasites can be an issue.
I believe that Heparin, Biaxin and Rifampin have played a big part in helping my cognitive function. I was also put on Savella, a seratonin/norepineprine inhibitor (MAOI). I hate these drugs, but it has helped me. I was warned that Flagyl would be horrible, but it has actually been one of my friends. Ceftin as well.
I HATE Doxy..... It makes me much much much worse and SICK and i've run to the hospital on numerous occasions in insane pain. I can tolerate it much better now that I am on heparin. I still don't take much of it.
A drug called Suprax did wonders for me a few years ago. It is an older drug and very expensive. I took it in liquid form and it was wonderful.
I know we are overwhelming you, but you must look at all of the infections and the possible drugs that go with them and sometimes you have to try a few to find the one "your son's body" likes--responds to.
Don't give up. Pray that the answer will come to your mind. I try to look at my worst symptoms, look at the infection that causes those symptoms, look at the drugs for that infection and pray the one I need will come to my mind. Oftentimes it does........ this is a horrible disease and an insane route to recovery. I know after what i've been through you can get your son back...
-------------------- rebecca Posts: 20 | From lake in the hills, illinois | Registered: Jan 2009
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What are his mental symptoms? Does he have any weird OCD like tendencies, etc?
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I am so sorry your son and you have to go through this. This is so familiar to our family. I remember thinking our son was going to die.
We'd push on him to try to get him up but there was no response. We literally had to pick him up out of bed. When his eyes were open, they looked glazed and distant. Very scary...
He has been treated for Lyme since January and Babesia since June. The Babesia treatment (using Lariam) was the thing that has made the most improvement in him.
The nurse commented last week that he is actually smiling and talking now. It has been a year long journey so far. Hang in there.
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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posted
hi everyone...wow thank you all Yes my son (20) did have all the blood work done, tested positive for every band and also Rock Mountain Spotted Fever. Very high levels. As far as co-infections; I'm not sure, the doc never mentioned any. Go again next week, will definitely ask. As for vitamins, I'm following Dr. B's. Weird thing, yesterday he had very bad diarrhea (1st time) doc said to stop the doxy till tomorrow but this morning he actually talked, not a whole lot but certainly the most in a couple of months. I will post what doc says (although he's not much of a talker) thank you all for replying...this forum is wonderful because of all the caring people. Good luck to you all, I'll keep in touch
Posts: 158 | From NJ | Registered: Jul 2010
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posted
hi sorry, wanted to add that he seems to go in stages with things. kday: About a month ago he DID have OCD, washing hands constantly and being in the bathroom just sitting. Lasted for about 3 weeks. He seems to do something for a couple of weeks then moves onto the next thing. Imhis4life: I'm so sorry for you. Old old is your son? I pray he too will get better
Posts: 158 | From NJ | Registered: Jul 2010
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posted
I also got worse and worse on doxy. dunno why. later rocephin helped me - but only for a while.
Posts: 226 | From earth | Registered: Sep 2007
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posted
frikfrak.. Your son MUST BE TESTED for all possible coinfections or he will not get well. And sometimes the test will come back negative even though the patient has the illness..just like with Lyme disease.
Now MAYBE he has none.. but that is rare, especially in someone so ill.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I know it's possible for a child to have Lyme and PANDAS. That's why I asked about OCD symptoms. Has your child ever had strep throat? Not that it really means much if you remember strep throat or not. PANDAS is a strep infection attacking the brain.
Just something to look into. You can see if your child fits the symptoms. Unfortunately, PANDAS is only clinical diagnosis. There is no test for it.
Symptoms can vary, but they most often present with OCD behavior, strange movement disorders/TICS, etc.
Unfortunately, it is just another a controversial disease. I don't get it.
I'm only bringing up another idea since you say your child is just getting worse treating Lyme and since it sounds like it is impossible to communicate or reason with him.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Could you list his symptoms for us? I'm sure it's hard to know what they are if he's so quiet and distant.
If he has a coinfection like Bartonella (which can have very psychological symptoms), it must be treated before lyme treatment will work.
To make things more difficult, coinfections often test negative so they really should be clinically diagnosed.
By telling us his symptoms, we might be able to help.
-------------------------
IMHO
Why would an LLMD not discuss coinfections?
I met a guy yesterday who has been treating lyme for 8 months with no improvement. That includes a pic line he's had for 2 weeks. No improvement. He said yesterday, the LLMD mentioned Babesia.
I know this might not be perfect, but if a patient has had no change in 2 or 3 months of lyme treatment, why don't they just go ahead and treat for Bart, then Babs (or vice versa) then Lyme and see what happens w/ each protocol? That makes more sense to me.
I can't imagine treating for so long and not getting better or even getting worse. I'd be so discouraged (and broke) that I just might give up!
So frustrating!! They need better testing!!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Everyone is right about bartonella. It causes a lot of mental problems. Dr. B says when the neurological symptoms are out of proportion to the physical symptoms suspect bartonella. The labs only test for two strains of bart (and there are MANY) so you need to rely more on symptoms. When you suppress lyme the co-infections come out.
In the beginning of my treatment of lyme I got better but then worse as the bart surfaced and took over. It is a horrible disease. I describe it as being like the dementors in Azcaban (Harry Potter) sucking the life out of you.
You must be frantic watching this. Please speak to your doctor about treating co-infections. There is levaquin, rifampin and Bactrim DS. Please post back to let us know how is is doing.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Lemon Water, Epsom Salt Baths...
sit back and enjoy the ride
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes detox and detox. Replace electrolytes constant.. and gentle massage.
I know it is horrible, but it will get better.
-------------------- 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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my sons symptoms are truly only mentally. No physical that we can tell. Doesn't speak, just says "its good" no matter the question or situation. Sits and stares at tv, whether on or not. Its very strange, he can actualy do most things, can play ping pong, badminton. Dresses self, feeds self. But very confused otherwise. I'll keep you all posted. Will let you know what the doc says about coinfections.
Posts: 158 | From NJ | Registered: Jul 2010
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I agree that Babesia affects the brain quite a lot, especially when it is dieing.
Inflammation can also cause some weird mental episodes. Is he taking anything to control inflammation?
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
He takes nothing else. Just the vitamins. He was drinking the lemon water for a while and doing detox foot baths (couldn't keep him in the tub for baths) but it didn't seem to do anything. Is testing for coinfections just a blood test? Can they find coinfections this way?
Posts: 158 | From NJ | Registered: Jul 2010
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posted
He takes nothing else besides his vitamins. I will definitely ask the doc to test for coinfections, we see him on Thursday.
Posts: 158 | From NJ | Registered: Jul 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I've been tested two times for coinfections (MDL) and both times negative. But I have Bartonella and Babesia, so you can't go by the tests.
You mean your son was a normal 20 year old, was bitten by a tick or some such thing so you know this is lyme? And his symptoms, for his whole illness, have been only mental? (Not doubting you by any means, just trying to acquire some details to the story.)
Since becoming ill, has he been angry, agitated, bothered by lights or sounds or commotion? Has he had OCD or depression?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
I am still wondering if this is not a herx. It is not unheard of to start a new drug and have this happen, even after previous treatment.
Maybe not, but the only real way to know is to stick with it and see what happens in a week or more after, see if this worsening is followed by improvement. This is a classic dilemma in lyme: when are you getting worse vs. having a herx.
Posts: 8430 | From Not available | Registered: Oct 2000
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree. And to point out again. The coinfections can commonly be hidden by the Lyme.
So don't expect too much out of testing.
I found the Babs protocols to be very effective. Yet I am negative for it.
-------------------- 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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posted
Frikfrak, I so understand what you are going through. My 21-year-old son went completely mental in just three months without remarkable physical symptoms. He went from a bright summer analyst in a NY investment bank to pulling his hair out, literally, OCD convinced he had been struck by lighting, angry, crying, no memory, to unresponsive, staring into space. This while he was on oral zith & spectracef. When our LLMD put him on IV Zith, 500mg, just once a week,along with oral zith, suprax and amantadine, after a two week herx from hell, he reovered miraculously and was able to return to college this fall. It was truly a miracle.
Posts: 43 | From Florida | Registered: Jun 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Wow, Boca, what a testimony!
Hope frikfrak reads your post!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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17 hens said... "I know this might not be perfect, but if a patient has had no change in 2 or 3 months of lyme treatment, why don't they just go ahead and treat for Bart, then Babs (or vice versa) then Lyme and see what happens w/ each protocol? That makes more sense to me."
That is what my dr did. I think it's smart!
frikfrak.. Yes, he needs a blood test for each coinfection.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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yes, my son was a normal 19 year old, working full time. Literlly started acting "weird". Took him to doc and told him to test for EVERYTHING, we actually thought he might be on drugs. Lyme test came back positive. Did the standard 4 wks of doxy but wasn't getting better so we took him to a LLMD. Was very angry at that time. My son is the sweetest kid so we knew something was very wrong. Doc put him on orals and twice weekly bicilian shots, then changed orals then finally IV rocephrin 2 mgs for 3 months. All did nothing, kept getting worse. Doc said she too couldn't figure it out. Now on 400 mg. doxy with new doc but she too was puttinig him on this. One thing that's weird is back when he took doxy he started laughing some, came and went uncontrollably and now that he's on doxy again he started laughing again, even so, he can't seem to control it and I don't think he's even aware of it anyway. He's way out of it, I think worse than ever. The 1st doc said she'd never seen the laughing before but this doc said its a herx. We just don't know what to think anymore. Did anyone ever hear of laughing as a herx?
Posts: 158 | From NJ | Registered: Jul 2010
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posted
I had that laughing thing for a while, off and on for a year.
Was positive for Bartonella and treated for it almost right from the start!
What a huge difference for me!
Bartonella really affected me mentally. Haven't laughed that kind of laugh since then.
Family and others really liked the laughing. It wasn't creepy or anything, just something new that I started to do, and then went away after the treatment.
Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
My daughter got very giggly for the first few days of Valtrex. I thought it meant she was feeling better, but her LLMD thought it was a herx.
Posts: 984 | From US | Registered: Dec 2007
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posted
Hubby used to have hysterical laughter during Primaxin IV's. I researched this and there is actually a type of seizure that involves uncontrollable laughter.
So yes, I do think the laughter could be a herx and to me it would seem to indicate that the antibiotics are getting into the brain.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I'm just chiming in because I had fits of uncontrollable laughing while in the middle of 4th and fifth grade and a few times in high school. This was eons ago btw.
Anyways I would be sent to the principal because I couldn't turn it off.
When my LLMD saw this in my health history when i first saw him he told me it had to something with my hypothalamus and the limbic system. I never had it later in life but thought it was worth mentioning.
And I've had bart for a long time.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Who are you seeing? I have a great doctor who specializes in neuro lyme in NYC. PM me if you need info
Posts: 298 | From usa | Registered: Aug 2009
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posted
thanks for the replies. If the laughing is a herx then something is definitely working. We see the doc on Thursday and will ask about giving him something else along with the doxy to help. Will also ask about coinfections and possibly treating them regardless. thanks everyone...all your replies really do make me feel better. I'll definitely post how thursday goes.
Posts: 158 | From NJ | Registered: Jul 2010
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posted
frikfrak - I can't relate to the laughing, but the male doctor you are working with is also my doctor and I have total faith in him. Just thought I would offer support from a different level.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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I past Lyme to both my sons. It has changed both their personalities and everyday is a struggle. We have tried many things. I am writing because the little one has mostly mental symptoms and is being treated for Bartonella. He is on Rifampin and Tindamax which have helped him a great deal. We took him off over the summer and treated with natural products. It was a big mistake and we have been through a rough time the last couple weeks. I see many have suggested Rifampin for the Bartonella and I agree with them. He is back on the antibiotics and showing improvement.
My prayers are with you, Melinda
-------------------- Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful. Posts: 144 | From Ohio Valley | Registered: Mar 2009
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Had another appt. with new doc, put him on additional med (can't remember the name) to open up his cells so the doxy penetrates better. Bouts of laughing coming and going each day....hope it is a herx, maybe the doxy is working. I don't think he's getting worse so that's good. Feel pretty good with the new doc so we won't be going back to the original one. Will post again soon.
Posts: 158 | From NJ | Registered: Jul 2010
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