I am such a newbie to all of this. I'm having a dilema and dont really know what to do, so I figured I'd just put it all right out there and see what you guys think.
My son (15) says his medicine is doing nothing. He has terrible neuro problems, and vision problems.
He says they are both worse. (He also has bad PVC's, joint pain, low body temp, headaches I could go on & on, my poor guy)
He has also caught a cold and tells me that what we thought was a herx wasnt, that it was just the virus comming on.
He was tested for lyme last month, but for some reason his LLMD only sent the western blot to Igenex and sent all of his co-infection labs to Quest.
He had only one of the numbers (30) as +/- equivical on the Igenex, and all his co-infection labs negative (does Quest ever give a positive anyway?)
(He was put on augmentin 875mg 2x daily & mepron 2x daily)
So, at his request I called his LLMD and told them that he thinks the medicine is doing nothing. I requested changing the augmentin to zithromax? or doxy? something that would cross the bbb?
With his vision problems, from what I've been reading would lead me to believe more along the lines of Bartonellosis as a co-infection rather than (or in addition to) babesiosis?
or at least bart causing more problems at the moment.
It just really stinks that they sent the labs to Quest, ya know... I just dont know...
Does augmentin or mepron do anything for Bartonellosis?
Is augmentin a good antibiotic for Lyme? neuro Lyme? (It is so hard on the stomach too)
After talking with several people at his LLMD's office on the phone Friday, I was told his medicine would'nt be changed and I should relax. His next appointment is in a month and a half.
He is having a brain SPECT scan in a week. I asked if the injection for the spect scan would be safe with his PVC's, they told me to ask his cardioligist about that.
The cardioligist is not lyme literate, and said he should be fine, but he couldnt say for sure. (holy $&#*!)
They (LLMD office) also said about his vision... I should contact his eye specialist, it's been less than a month since he saw him.... and he also is not lyme literate.
The eye specialist finds nothing wrong with my son (never heard that one before) blurry vision 24/7, but nothings wrong.
hmmmm...
This is the whole reason why he needed the LLMD!
None of these ducks where we are, know anything about lyme or we wouldnt have to have traveled states away to see an LLMD...
He has only been ill for 3 1/2 months but all of these terrible heart, vision, and nuero problems came on fast and strong.
I am his only advocate
Am I wrong to think he should be on something better, now?
Or do I tell him to hang in there and give it a chance?
I just dont know how to handle this, any advice would be very helpful...
I'm not mad (it probably sounds that way) I'm just really confused and want to help my son all that I can.
I wish I was the one that had this instead of him, I would take it in a second if God would let me!
~Ma
Posts: 70 | From Central NY | Registered: Sep 2006
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lymie tony z
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Member # 5130
posted
Hiya MA,
I have never tested positive for co-infections and had severe neuro and vision problems...so it does'nt necessarily mean your son has any...BB is sufficient...
I've only had Augmentin for 14 or so days to clear up a sinus problem...that came back anyway...I did'nt notice any significant lyme herx with it at that time or benefits...like your son...nothing...
You may have gotten these meds in him at the end of his cycle...it is the end of the month and I at least am comming out of my monthly cylce at this time so perhaps this may be why he's not getting any reaction.
You and he may very well have to wait it out... Or if the augmentin is causeing a lot of stomach problems hold off on it for about a week and a half...till the next cycle begins and then hit it again...
Personally my neuro problems were never cleared up with orals alone...had to have IV's.
Good luck...anything else? Don't worry too too much...at least you have a llmd......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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It's good to know that the neuro & vision could just be from the lyme.
I honestly dont think I'm gonna be able to get him to take the augmentin tonight.
(I've been using someones signature quote) "you want your life back, then take it!" to get him to take it through this morning.
How long did you take the orals before they put you on IV's?
~Ma
Posts: 70 | From Central NY | Registered: Sep 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi Ma-
There are definitely very fine LLMD's right there in the state of NY- I travel from MD to go to one.
You can post in looking for DR section of the board here.
There is lots of great info and support to be found here-
you might also want to check out the link below- its a list of online support groups specifically for moms/kids with lyme. (the yahoo group comes highly ecommended.)
(edited to insert tiny url- that's pretty neat- thanks tutu, for the educating. )
[ 03. October 2006, 11:21 AM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
If he has been on Augmentin less than a month, he may need to hang in on that stuff. What is his objection to taking it?
It does sound to me that you think you are not getting the kind of follow-through and coordination of treatment that you expect from the LLMD.
You may very well be right. At least you are in the part of the country where you have choices. With all the serious problems he has had, especially with his heart, it would seem to this lay person that agressive treatment is called for.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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bettyg
Unregistered
posted
Ma, ask why he didn't send the CO-INFECTION blood to:
Igenex, MD labs, or Bowen labs?
I request that at YOUR LLMDS EXPENSE!
I also sent you a list of NY LLMDs; check it out; I don't like what I'm reading there.
Are they really a LLMD or a beginner one like I had for 1.5 years?
GET A GOOD, EXPERIENCED ONE only and safe yourself $$ and recovery time.
Ma, you are a WONDERFUL ADVOCATE for your son.
Note in GENERAL about a TEEN CHAT group!! He needs others his age to talk about their mutual illnesses and how it affects school work, friends , etc. Bettyg
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Ma,
How did you get this awesome screen name? Sounds like you deserve it!
How old is your son?
Some ideas to add to excellant advice you have recieved...I will focus on the tummy issue as my daughter has struggled with this.
Sure makes it hard to get through the day.
...getting the abx in liquid form can ease stomach discomfort
...lyme and co. can cause acid reflux and GERD. If he tests positive for these, over the counter meds may ease the stomach discomfort.
....Yeast overgrowth can make tummy hurt. Are you giving probiotics?
***It is normal to be confused at this stage!
***It takes time for our kiddos to get better. You are doing many things to help your son recover. Be kind to yourself. You will see improvement.
***I have survived my bouts of the crushing overwhelmedness by prioritizing treatment needs and focusing on a few at a time. For example, this week I will scheduling appts tests,get the liquid form of abx, and buy a good probiotic.
I have had a few weeks where all I did was feed, medicate and watch DVD's with the kids. And rest while the lyme is being slowly but surely eradicated.
We needed those quiet times in between the energy-draining running around to drs and all.
We are in a marathon. Many with lyme need months and months of abx. We started my daughter on standard dose of dioxycline-2 rounds-we didn't know better; but it did start getting her germ load down. She went on to a much more radical regimen and is getting much better.
The best LLMD's rotate abx. I do not think you should overstress yourself about getting him on the "perfect" one stat. Just saying take some encouragement in the fact that your son is recieving treatment and you are on the ball with pursuing the best treatment as soon as you can and that is the best we can do.
We are with you and he will get better. Char
[ 03. October 2006, 10:34 AM: Message edited by: char ]
Posts: 1230 | From US | Registered: Nov 2005
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lymie tony z
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Member # 5130
posted
Hi Again Ma,
Back in 98 when I was first diagnosed I requested IV abx immediately...unfortunately I had a duck...
These ducks put me on ammoxy and doxy for a month...however because I got in touch with a lyme group in my neighborhood I wrangled a way to stay on the meds for six months...
More ducks told me I was surely cured by that time and took me off all meds... Within a month and a half I was worse than when I began...and THEN they put me on IV Rocephin...again for only one month...
Sooooo...orals are OK for some but not me as it turned out... I got better with the rocephin but because it was'nt strong enough long enough I had to have further treatments down the years...
Hopefully your son won't have this problem...
My personal feeling with kids is IM penicillin once a week at least for six months...
this is what I was given when I was 4 in 1954 before they knew about lyme and I was diagnosed with infantile parallysis...
which sent my lyme into remission and I lived a pretty normal life till the ducks screwed me up with anti-inflammatories at age 45....
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
ma,
Lyme treatment takes time. Your son will not see immediate improvement. It might be difficult for him to understand, but this isn't the type of thing that after a week your feel better on the abx.
There could be many reasons his doctor has him on the current regimen. Some LLMD's like to start slowly. They don't want to hit the patient too hard. And Mepron is a really hard drug.
As for Quest, I tested positive for babesia through Quest. So yes, you can get positives through Quest. Not every LLMD relies on Igenix for everything.
You also said that his symptoms are worse. Any reason not to believe that's a herx?
My LLMD refers me to non-lyme literate doctors all the time. The reason is to make sure there isn't another cause for those symptoms or damage. Honestly, there is nothing I know of that can be done for blurry vision from Lyme besides waiting out the Lyme treatment. And the eyes will often appear normal in tests.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
There is a conference report on the use of IM penicillin in pediatric cases of Lyme disease. It's a meta analysis that reports pretty good outcomes. That is probably the same thing Tony reports having helped him as a child.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
hey ma iv rocephin stat plaquenil might work beter than mepron. my neuro problem didn't go away completely but got 98% better with iv rocephin. must have blood test every week. insurance may be a real issue. my last iv was 2 months ago, third of three and two were covered by insurance last on still fighting. they have really tightened there hold on our privates when it comes to insurance.
should treat for all coinfections at this point, at such and early period of time.Neuro is many times babs., but the mepron shold have helped.
no lab test is reliable for lyme but bowen test will show bugs swimming, and good for insurance. the price however, is not covered by insurance and is $250 but it is tax deductible.
a good llmd should treat symptoms and not by tests.
good luck
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
Most good LLMD use a macrolide (zithromax or Biaxin) with the Mepron. Something about making it work better and not causing a resistance to drug. That would be the last thing your son needs. With many nuero symptoms he should really be looked at for IV therapy or IM injections. I would also redo all the coinfection tests through MDL and Igenex. A must- especially the FSH for Babs through Igenex!
Through my whole ordeal there were times during treatment that my eyes really killed me. The pain behind the eye balls was heavy and sharp. I have/had Lyme, Babs, Bart and Myco.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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Thanks so much for all of your advice and kind words.
I think maybe I need to calm down, and wait a little longer with these meds.
It is so hard to trust any doctor after what we have been through. Not one duck up here would even give him a lyme test or consider that it could be lyme.
When as a mom, you've had to search the world over and figure out for yourself what is wrong with your seriously ill child.... and you know all the ducks are full of poo, something in you cant stop.
It makes you feel like now you need to figure out how to make him well (all by yourself), even what meds...*
It makes you crazy to say the least, I'm sure many of you understand what I'm going through.
But we are told, he's in good hands with his LLMD.
He has a history of antibiotics not working on him (ear infections ect.) so I think knowing this is adding fuel to the fire.
He's gonna kill me for writing this but... usually we can tell if an antibiotic is working because his acne clears up, and it hasnt.
His vision and confusion symptoms have increased alot. It's hard to tell if it's a herx or the continuation of his conditon getting worse.
He has never hit a platoe since getting sick... everyday it has just gotten worse since the begining.
This just makes both of us think he needs either a different antibiotic, or an additional one.
This is such a hard situation to wait and see. I know you guys know this, too well.
Dilly- Thanks for editing that link : ) I checked it out, I like alot of them but have to sign up for yahoo first. Maybe tonight... Also, I posted for a good eye doc that knows lyme.
David- I think he probably does need to wait a little longer with the augmentin. His main complaint is that it bothers his stomach.
It does okay if he has a real full belly when he takes it, but he doesnt think he'll be able to take it for months on end because ...
(his words) "this stuffs gonna wreck my guts in no time".
We have a phone consultation coming up in a week. Hopefully his llmd will consider adding an additional or different abx then.
If not, I wont wait too awful much longer to seek a different opinion. Thanks for the support.
Betty- I really did think his labs were being done a Igenex when the blood was drawn. I wasnt pleased with the lab or the bill to say the least.
I didnt understand at the time that the only one going to Igenex was the western blot & was so new to all this... I thought the western blot was everything.
I had no idea any other blood work was even being done. I guess I need to ask them to make things a little clearer when it comes to labs.
I doubt they'll foot the bill, but it's worth a shot. I'll try...
The teen chat group will be great for him in the future, but right now he cant even look at words.
Char- Thanks for the good advice. He is taking theralac probiotics and juice plus.
I also have him eating alot of plain yogurt. Hopefully we can ward off the yeast.
Thank you for the kind words, we really are in a marathon... you hit the nail on the head. I need some DVD days.
You really made me feel better, thank you.
Aniek- : ) I'm definately starting to understand how long this takes to see any improvement at all.
My son doesnt think he's herxed yet. We thought he was herxing, but then he came down with a virus (one of his 4 brothers also has it) the virus only lasted for a few days.
His symptoms have just gotten worse day to day, whole time since becoming ill. It's hard to tell if a herx has happened, he says he's not herxing??
About the non lyme docs here... I see no reason to take my son back to these quacks.
They couldnt find anything wrong with him then, why go back? I dont need the bull or the bills.
I dont think I'll be taking him to any specialist that isnt lyme literate in the future. Hopefully the vision will clear up when his lyme starts to improve, god willing...
but I know we would both feel alot better with a second opinion from a eye doc familiar with lyme.
~Ma
Posts: 70 | From Central NY | Registered: Sep 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Ma, with the combo he's one you may want to add artemisinin to the mix. Art is a capsule form herb that hits babs and may even bust up the cyst form of Bb and may work against bartonella.
If his symptoms are worsening then I doubt it's either lyme or babs that's getting worse as the augmentin would keep down the lyme and the mepron would go after the babesia. My guess is that he either has bartonella or he's herxing or both.
Neuro problems are pretty common with bart. Perhaps, if you told the doc that the augmentin troubles his stomach he'll switch it to rifampin or levaquin which attacks the bart very well.
He should be taking a lot of acidophilus 2 hours before or after his abx. It'll hold down the yeast.
If your son is showing signs of babesia then by all means continue that treatment. Babs is noted for migraines, chest pain, labored breathing, sweats/chills, heart palps.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Ma,
Just be aware that there are few Lyme literate specialists out there who are not LLMD's.
Sometimes you get a symptom that you have to get checked out to make sure it isn't Lyme. Just because your son has Lyme doesn't mean he can't get something else.
I'm just saying this for preperation. So you are aware of this if something comes up.
I hope your son starts feeling better. I was 14 when I first had symptoms, at that time basically just a very swollen/painful knee. I remember the frustration of getting no answers from doctors. It's hard, but he seems to be on the right track now.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
The inability to read a sentance and comprehend or remember what he read will subside with treatment... The floaters,and light hypersensativity and blurryness will also resolve...
The ear infections I would get yearly were finally cleared up by a ENT that gave me drops that were both antibiotic and antifungal...
Whenever the pills bugged my stomach...I would mash fresh bread around them before I swallowed...
I could never do juice...to much sugar and it would give me a headache/hangover.
Gastritis is a common problem with this disease as well either from drug irritation or the disease itself.
good luck MA
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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I dont need the bull or the bills. 
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