posted
My 12 year old son was in the hospital 4 days this week and is now home but using a wheelchair. My wife and I are desperate for any suggestions. The short history...
He was diagnosed with LD in March and put on Biaxin, Monocycline and Plaquinil. Symptoms were all but gone in September, then he started again with nausea/vomiting, migranes and leg pain. He also started taking Cyproheptadine for the cyclical nausea.
We thought the antibiotics were not working any more so had his prescription changed in early November (about 3 weeks ago) to Doxycycline and Omnicef. We saw rapid temporary improvement (no nausea, headaches and less leg pain). Then a week ago Friday after some hard exercise his legs started aching badly. The pain got worse every day. Tuesday he woke up and couldn't move his legs! We ended up in the ER and they admitted him to the hospital.
Spine-related issues were ruled out (thankfully), and apparently the blood work did not show any signs of muscle breakdown. The hospital staff was thorough, but not very Lyme friendly. They suggested the cause was anything from negative reaction to the meds, to psychological ("in his head"). Right now we've taken him off absolutely everything with the hope of re-setting his body chemistry and then ruling things out (or in) based on symptoms.
BUT - my wife and I are NOT qualified to be his medical "general contractor". The diagnosis is unclear, the advice conflicting and the symptoms puzzling. My son is in a wheelchair and my wife and I are at our wits end.
We're willing to dance naked through fire with incense if that's what it'll take. But before it comes to that I wanted to put out a plea on this board for help.
Please help! What questions do you have? What questions should we be asking?
Posts: 16 | From Rhode Island | Registered: Dec 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Here are just a few of my thoughts as a lyme patient.
First did you call his llmd and tell him of the increase in the severity of the symptoms?
If so what did he say?
If not I would do that.
Second thought - It could be a herx. He just started new medicine recently (3 weeks is relatively recently).
Sorry if you already know what a herx is but I will explain it in case you dont.
A herx is when more lyme bacteria dies in your system then you are able to clear out..
so you become toxic and old symptoms may return and/or new symptoms may appear and/or current ones get worse.
Thing is hospitals arent very good with lyme as you have found out... I dont really think many of the drs in hospitals have any concept of what a herx is or that is can be severe.
Third thought- was his activity severely decreased once he got sick and has he jsut started to be active again?
If so muscles need to be rebuild. I pull my stupid muscles doing none excertional activities... I dont want to think about the pain doing a heavy duty activity would cause.
Our first course of action was to take my son to his Lyme doctor who recommended that we stop the meds for now and get him to the ER. He also considered the Herx possibility, but thought the reaction was too severe. I guess that's still an open question.
To your other question - my sons physical activity was somewhat limited since his illness but not so much that a workout should cause this. But I guess anything is possible.
And hence the source of our frustration and heartache... with all these possibilities, it's nearly impossible to pinpoint the cause and then set a plan of treatment.
Any opinions on if our current plan - stopping all meds for the time being - is a good idea?
Posts: 16 | From Rhode Island | Registered: Dec 2006
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posted
What is his status with regard to the common coinfections with lyme: bartonella, ehrlichia, babesia?
Sometimes when the lyme symptoms abate, another coinfection symptom set surfaces, one that was not previously detected or treated. Just a thought. Would be worth looking into this aspect.
Unfortunately, the tests do not detect all the strains/species of these other diseases. Like lyme, it can come down to clinical judgement and even guesswork as to which symptoms belong to which disease. They even overlap, to make it more confusing.
This is a very complex and aggravating disease situation. Can be extremely trying to cope with it all. Sorry you are having so much trouble. Sending best wishes to your son.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
He tested positive in March for a co-infection called (I may have the spelling wrong) microplasma fermentin. When we went to the Lyme doctor last week they took new blood samples and we haven't recieved the results yet. This is certainly one of the possibilities we're considering.
can anyone explain in layman terms what causes the leg pain to this degree? Is it inflammation at a micro level? Infection? Psychological? Lyme spirochaete's sniping from behind hidden bushes?
Also, with all the controversy around long-term antibiotic treatment, can anyone explain what the antibiotics are intended to do after the initial 3-4 weeks? We are definitely getting mixed messages on that one.
Posts: 16 | From Rhode Island | Registered: Dec 2006
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
I'm sorry for your son. During my treatment,I would have these awful leg,shin pains. I had to remain in bed with warm heating pads covering them.Constantly,the hotter the better.
With time those went away,but it really was bad.I think this type of herxing stayed w/ me about a month,off and on.
Wish I could remember what meds. I was on when this stuff started. ******** They suggested the cause was anything from negative reaction to the meds, to psychological ("in his head"). Hey young man,IT IS NOT IN YOUR HEAD...I BELIEVE YOU and IT HURTS!!!!!!
It is a terrible,unbearable pain.You must be a brave and strong young man.Hang in there.
I've had to start and stop meds.Everyone is different.Some say no,some yes and some have holidays w/ treatments,with abx. in between.
I hope it is a herx.Mine were like this,very painful.Pain ozzing from the legs,bones,head,arms,shoulders.This leg pain was very nasty...make it go away...please type pain.
Would your Dr. give him the patches to wear on the legs that relieve some pain?Those helped me.
Maybe your son needs to take it a little bit slower.Be strong kiddo.You can do it and get better.
That kind of leg pain is very real in Lyme recovery.I'd go thru it again though, anyday,in place of a young boy having to do it.I am so sorry he has to deal with this know.My heart goes out to him.
You will get him better Mom and Dad.Stay strong and believe in him.Lyme is showing its colors and they aren't pretty.
Posts: 1076 | Registered: Apr 2003
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
First I have to say these are just my opinions as a lyme patient.
First please dont believe that the pain is psychological.
You also have to realize that lyme can cause excruiating pain. So just because he has gotten severe pain does not mean that it is not the lyme.
I have had herx pain so bad I had someone take me to the er.
I have had pain in my joints muscles and bones.. to the point I could barely get to the bathroom from the couch , had to hold on to wall to do it and that was the only time I left the couch.
The pain made it so I couldnt grip onto anything either.
The pain in my muscles (legs arms) felt like it was being sliced open.
so did the pain in my bones (legs arms)
every joint with the exception of my spine and jaw felt like it had a sword through it.
Has he been treated for the mycoplasma (this spelling is closer although might not be exact)coinfections need to be treated too. Sorry I am not really sure what abx treat it.
After the intial 3-4 weeks the abx are still intended to kill the infection (lyme/coinfection)
My guess the thing that is causing you confusion is that you have encountered drs who follow the IDSA guidelines. They believe after 3-4 weeks you do not have lyme anymore...
Dont so many of us here wish this was true.
Many of us got much worse because we ended up being treated by these ding dongs who dont believe that lyme persists after 3-4 weeks of treatment.
Please dont believe this line of thinking. These guidlines have wrecked more peoples lives than you can imagine.
If you see posts about a ralley it was to protest the IDSA guidelines.
This may sound a little silly but if it is a herx drinking water might help (I know it does help me a little)
posted
A pox on all psychological explanations! Lyme can cause psychiatric symptoms because the bacteria will cross into the brain. However that is quite different from thinking that a child is inventing a pain. Don't let anyone tell you this.
Bone pain in lyme is fairly common. I had it in all the long bones, starting in one lower leg a month after the bite.
It sounds like you are at the stage to need to read some of the newby links on the disease and the ideas behind the need to keep treating longer term than a couple of weeks. You did not say if you know how long he might have had the disease before it was diagnosed. The longer it went undiagnosed, the longer the treatment has to be for most people. Even some early catches can be harder to treat.
Mycoplasma fermentans is fairly common as a coinfection too. I had this one as have a number of others on this forum. But, on the other coinfections, you need to remember that the tests do not catch them all, so be a little skeptical of all negative tests. Keep an open mind.
Educating yourself about all this is a good move. Start here:
And then go to the newby learning links at the top of the medical forum list of threads.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
First, thank you to all for your responses and good wishes. It's helpful to be among people who understand.
Believe me, our minds are open to any and all options. To review the bidding - my son has been on antibiotic treatment for 8 months. After 6 months things were looking really good, then he backslid with some symptoms. Changed the meds 3 weeks ago and after an initial improvement his legs went downhill fast.
Our current course of action is to cease all meds, re-group and take stock of the symptoms. If this course doesn't work we're open to starting again and even do the IV antibiotics, but we're fearful of doing more harm than good by changing courses. Does anyone have experience with this approach? He's been off the meds for 6 days, his pain is subsiding and no other symptoms have occured at all so we're cautiously optimistic. But at the same time we're feeling very inadequate and totally like we're guessing. I know that definitive answers aren't available, but if anyone has a similar story to tell it would be helpful to hear about it.
Posts: 16 | From Rhode Island | Registered: Dec 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey R3,
Our situation with our son was very similar to your's. Our son was playing on his HS football team and bang, here came the terrible leg pain. One of his worse symptoms. He's playing football in Oct.04 and by Jan.05 he's in a wheelchair.
He had lyme and babesia. Babs can cause some awful leg pain as well. Not to worry, your son will be OK, our son had the paralysis as well.
I'll send you a Private Message on the board with my contact info and see if I can't help you guys out. The private Message icon is above your post with the 2 people and the envelope. -Mike
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
During one of my horrible lyme flares, every joint in my body locked, including my jaw. I couldn't even talk, put on my clothes, or walk. It lasted a while, but subsided with bart and lyme treatment. Did your son have any elevated inflammation titers? My C-Reactive protein always skyrockets when I get a flare. Best wishes to you and your family.
Posts: 1603 | From ny | Registered: Aug 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Has your son described the pain in detail? Knowing as much about what the pain is like could help people give you advice.
Is it the whole legs, or part? Does it seem to be in the muscle, in the joints, in the bone? Is it burning, stinging, aching, stabbing?
The most detailed description you can think of.
There are medications that your son can take to help control the pain. But it is usually a difficult process to find the right medications. If your LLMD isn't the right person, see if he knows a good pain specialist (good ones are around, but difficult to find).
I know everything right now is terrifying. But if your son is in pain, you really do not need to worry about addiction. Every study has shown opioid medication used properly by people in pain do not cause addiction.
I had severe knee pain from Lyme starting when I was 14. I was never given anything stronger than ibuprofen. When I first felt the results of Vicodin as an adult, I actually cried because I realized I could have taken something to help the pain as a child.
I hope your son is feeling better. Have you tried heat? Heat seems to help most of my pain, even if just a little. And do you have pets? If so, let them cuddle with him. It sounds silly, but my cats really do take my mind away from pain.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thank you all again. Mike, I may take you up on your offer of help... I'll need to figure out the PM stuff, today is my first day on this site.
As to the question of pain. I can give good details since we went through it dozens of times in the hospital this week.
His hips are not sore, nor is anything above that sore. His feet are not sore and he has almost full motion there, i.e., like stepping on the gas motion. Everything in between is suffering from some combination of pain AND weakness. The most pain seems to be in the thighs on top of his legs, but reaches around to the back and all the way down through his knees and calves. He describes the pain as being more muscle than bone, and more like a severe ache than "pins and needles". At its' worst he described the pain as 9.5 out of 10 (and his face showed that he wasn't kidding) and it's been as low as a 4 after rest and a hot bath. The bath was the most effective treatment yet. Regardless of the level of pain, because of weakness he still can't walk. He can move his legs and bend his knees only very slightly... but the good news he has shown that just about everything works a little. He's a trooper and is working through the pain. The local doctors (not his LLMD) prescribed physical therapy to get his strength back. Any opinions on that?
Posts: 16 | From Rhode Island | Registered: Dec 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The type of pain you describe is not uncommon with Lyme.
Many people with Lyme find physical therapy can worsen pain. It is worth trying, but be aware of that.
My pain is different, but I do have muscle pain. For me, physical therapy only started working when I began taking muscle relaxers. I took Flexeril. I started at a very low dose, 5mg a night, and increased by 5mg every week. I was eventually at the maximum dose, 30mg a night.
That relaxed my muscles enough that the pain went away. I was then able to have the pt work. My pt did myofasical trigger point release, which releases the knots in the muscles. Then we did stretching and evenutally strengthening.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm so sorry this is happening. That first of all.
I had searing, burning pain in my legs, my knee and my hip. It honestly felt as if they were on first.
Both my acupuncturist and LLMD said this is nerve pain, and, as Aniek said, in my case, physical therapy made it worse. In fact, it was absolutely out of the question.
Several things helped me, I think: time, antibiotics and, probably acupuncture and Chinese herbs. Now, the only time I experience any of that pain is when I'm herxing.
Like Mike's son, I also have babs and another tick-borne illness called Bartonella.
I hope you're able to get some relief for your son!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
R3,
At the top of one of your posts to the right of the date, click the 2 people and envelope icon. It will take you to the Private Message I sent you. To respond, just scroll down and hit reply.
I provided my ph. no. as it's so much easier to explain by phone, I'm a lousy typist and you'd wait forever for a typed response. LOL
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
If the pain in his legs is in the muscles or nerves, a far infra-red heating pad may help.
I bought two of these, one for my back and my knee, and one for my mom.
I used it for an hour a day for a couple months....don't need it much any more.
You can google for information about infrared. It increases the blood flow to the muscles and nerves, and this helps to relieve pain.
When I first began showing symptoms of Lyme, I had severe pain in the calves of my legs. If I worked for an hour in the kitchen, I had to spend two hours resting in bed...and it still hurt like heck.
It was so much easier for me to buy a unit for my back pain, than to persuade a doctor to order PT, and then get myself to PT on a regular basis.
Hope this helps. Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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bettyg
Unregistered
posted
welcome Dad! So sorry to read about your son's leg pain. Outstanding history given to us all.
I've had extreme leg pain for decades! Recently had xrays again. This time found out my left hip is completely gone; I'll need to have complete hip replacement.
But my leg pains began when I was 7-8 yrs. old.
I'm going to send you my 21 pages of newbie links/advise by PM, private message!
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tailz
Unregistered
posted
Please don't take 'it's all in his head' as a reason to explain his symptoms. I want to cry every time I read that.
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posted
I'm so impressed with the level of concern and knowledge here. Thank you all.
The one thing everyone agrees on is that the parents know best, so my wife and I quickly dismissed the all-in-his-head theory suggested by some doctors in RI. But now I've learned that his prescription for PT reads something to the effect of "non-biological" so the therapist may not accept him as a patient. Can you scream?
I want to learn from this. In all of your experience, what "biological" signposts should we be looking for? Surely there must be a testable indicator that something is wrong when he can't walk?
Posts: 16 | From Rhode Island | Registered: Dec 2006
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posted
and another question. with the pain in his legs subsiding to a very tolerable level, he still has so much weakness that he can't stand. I've read a lot about pain but not as much about the lingering weakness. Is this another clue anyone can decifer?
Posts: 16 | From Rhode Island | Registered: Dec 2006
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I am sorry if I alarm you here but you need to be VERY serious when dealing with mycoplasma. Focus on the mycoplasma NOW! Mycoplasma is well known for causing acute transverse myelitis and paralysis. There are many documented cases of this along with motor neuron disease associated with mycoplasma. There are many documented cases of this with children.
Some children recover, and some do not. I am sorry and I do not mean to scare you but I do not want you to think that this could be just a herx and that you should wait this out.
There is a little girl (same age) here on a ventilator with motor neuron damage and paralysis from mycoplasma.
If your LLMD is not experienced in treating myco then you need an expert right away.
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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posted
Mycoplasma has been discussed a number of times on the forum. Would be a good thing to do a search of the archives on this subject. Go up to the string of words up above, starting with "my profile." Click on search and fill in the boxes. Probably search just in medical forum.
posted
I've been researching like mad (maybe it's just therapy for me?). The medical establishment can't see past their textbooks. The cure that will surely come in the future hasn't shown itself yet. And here I am feeling completely inadequate as a parent for not being able to make my son better... and it's all so discouraging.
As of today, the pain in his legs is just about gone (yeah) but the weakness is still making him unable to walk so he's back at school in a wheelchair.
My eternal gratitude for even one new suggestion from anyone on something to try...
Posts: 16 | From Rhode Island | Registered: Dec 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi r3coolkids,
I would get your child to the top lyme pediatic doctor, who my son is currently seeing.
My son was very sick and he had a lot of pain, leg pain, headaches, weakness, nausea vomiting, he vomited weekly for two years straight.
However, because of his LLMD, he is now almost well, he still has some bad days here and there, but overall he is much better.
You can PM me if you need the name of a LLMD.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
I have heard pretty much the same thing from my wife's family in Wisconsin...
Just for grins and giggles, I would check his diet.
Eliminate the junk carbs like cake, candy, donuts cereals and soda pop. No diet drinks of anykind.
Aspertame is very dangerous for sick folks..
Most junk carbs contain high fruitose corn syrup. Very nasty stuff that will mess up the blood sugar levels...
Is he milk tolerant? If yes, then he can drink milk for quick energy... But, be sure to drink lots of water.. If you don't have house water filters, I recommend Walmart Sams club bottled water....
If he is having drastic mood swings and weakness it could be caused by too high blood sugar level swings. Drastic high to low swings... Bad diet will cause this... (Too many sweets)
Have the doc test the A1C blood sugar level when doing blood tests.. It should be 6.0 or under...
Blood sugar is a good indicator on how the body is handling the diet...
His body needs natural animal fats to fight the disease.. Home made chicken soup is really good when sick.... Easy on the salt...
Hamburger dishes, beef/pork roasts are good.
Get rid of all veggie cooking oils. Use only olive, coconut, natural butter oils for cooking. Coconut is best. It is really good for the immune system..
Of course no fast foods, pizza, fries, burgers, ect; or least as possible...
Lots of eggs, bacon, and high grain toast for breakast will give the body a good start for the day if he is able to eat. If not scrambled eggs and a little toast washed down with milk or water... Eating this for supper will help a weak stomach for the night... Watch the bowel movements. Good indicator on how the body is working....
Check the color of the Pee and the presence of blood... Should be bright yellow... If not usually means not drinking enough water...
(Smell the poop (YUK, but a good indicator) if it smells like old road kill and very hard something not right.... Beware of laxitives some are hard on system. I would recommend enemas....
Check for blood in stool. if not sure, there are test strips at the drug store that can do that. Lots of info on the web....
This what I have found from taking care of sick folks...
The main thing is to use lots of common sense...
A sick body cannot repair itself without good fuel and materials.....
Good luck
Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
R3, the offer still stands if you want to call me tonight after 7 pm. We've been exactly where you are now. Believe me, I've counseled innumerable parents going through the same thing. I'm not a medical professional but a parent that's been through all this.
I agree with the other posters, you absolutely have to have an experienced, lyme literate doc treat him. Besides lyme and mycoplasma, there may be another co-infection their missing. Though the pain has subsided that doesn't mean it can't come back. Not to scare you but running to doc's that know little or nothing about this disease isn't going to cut it.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
NP40 - I got your PM and responded with an email. Thanks again and if time permits I will take you up on it... but time is a scarce commodity these days.
For all other concerned responders... we ARE under the care and in frequent contact with a top pediatric LLMD in CT. Sorry if I hadn't made that clear in the above posts. While it may be true that this is our best hope for the future, I know you all know that it's hard to take solice when your son is unable to walk
By the way, it was our LLMD who recommended we go to the ER last week. We're not completely winging this on our own even though it feels that way.
Posts: 16 | From Rhode Island | Registered: Dec 2006
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posted
Any doc that checks for coinfections, including mycoplasma, knows something about tickborne diseases.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Please - can anyone confirm these symptoms as Lyme related. I ask because we don't want to rule out any possible answers.
Very specifically - 1) the weakness in his legs has lasted over a week, even though the pain has mostly subsided. 2) the pain and weakness are both perfectly symmetrical (i.e., exactly the same places, intensity and duration in both legs) all the time. 3) from his hips-up and from his ankles-down, there is no problem... all symptoms are contained from his thighs through his calves.
We've heard from LL and non-LL doctors that this particular "presentation" is unusual. If anyone can confirm through experience that they've seen this combination of symptoms it will help us greatly.
Posts: 16 | From Rhode Island | Registered: Dec 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I suggest posting a new message with a related title, like "leg weakness."
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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