His pediatrician tested for lyme and of course, it showed up negative. She referred us to a neurologist who's son had just gotten over lyme. He performed an MRI and said it was identical to his son's MRI. He started Jess on doxy. After about a week of this treatment he attended school one morning when the nurse called and said that he had become dizzy, and was complaining of chest pain. We rushed him to the ER, where they performed a multitude of tests. They detected a heart murmur, but were puzzled as to it's cause. Without a definitive lyme diagnosis, backed up by positive blood work, they refused to state this was the cause of his distress.
We brought him home from the hospital, where he promptly laid down in bed and fell asleep for about 5 hours. Upon awakening his leg pain was so severe, that he could barely get out of bed.
My wife and I packed him up into the car, and drove to a very renowed hospital about 45 minutes away from our home. His hospital stay amounted to a total of 6 days, where the only real relief he had gotten for pain, was from morphin injections. All other pain killers had a negligible effect. A team of specialists conferred, poked, prodded, spinaled, x-rayed, and just about anything else you can think of. His tests all looked pretty good, he was negative for lyme, however, his ANA count was high, and his monospot was positive. Of course, at the time, we had no idea that this was conducive to lyme. Boy, have we gotten educated quickly!
We were sent home, and his doxy was discontinued by the hospital staff, in place of pain relievers, which didn't help. His symptoms continued to worsen. Severe headaches, leg pain, chest pain, fatigue, inability to sleep, neck pain, dizzyness, trouble concentrating, light sensitivity, the whole gamut. The hospital informed us that this was probably a post viral infection of some kind, as he had a root canal for an infected tooth, done some weeks before. He also developed a sinus infection about this time. So the "post viral infection" seemed somewhat logical.

However, his symptoms continued to worsen, and we continued looking for answers, as it was becoming clear to us that this was more than a viral infection.

I contacted the WI. Lyme Foundation as I had been reading per the interent about lyme and it's various symptoms. We live in Northern Wisconsin and are surrounded by forests, and my son actively hunted, and ATV'd in the woods across the road.
The lady that runs the lyme association in our state contacted me by phone. We discussed his blood make-ups, symptoms, etc. She suggested strongly that he may have lyme, and referred us to a competent LLMD.

The LLMD has him on doxy and omnicef for approximately a month now, with no noticable improvement. His blood work was redone and sent to Stonybrook, where he tested positive for lyme. My son will be starting IV treatment next week, so we're hopeful that we can beat this insidious illness. He's scheduled for a two month IV treatment initially which we will be administring at home.
As so many of you know, it's horrendous to have your child suffer while not being able to offer any help. We've run the gamut of doctors, dealt with their rudeness, and complete inability to deal with this disease. We've been given the old "it's all in your head" routine. Needless to say, Ducks are no longer in our son's treatment equation.

His pediatrician wanted to see his positive lyme results, but I decided not to authorize the release of that info. Why, involve her, when she isn't part of the treatment ? I even had one so called "infectious disease specialist" send me a letter, where he went completely out of his way to tell me how wrong I was to believe that my son may have lyme.
Our insurance has probably paid out upwards of $40,000 so far, where a competent lab, $200 of bloodwork, a couple of hundred bucks of anti-biotics would have been sufficient, if it had been diagnosed correctly. Believe me, I sent a letter explaining all of this to my insurance company in no uncertain terms. How insurance companies think their saving money, is beyond me ! Pennywise, and pound foolish !

I'd like to ask you all a question. Are there any meds that you've had success with, in treating pain associated with lyme ? The worse pain is in his chest, head, and legs.
We've tried numerous things, but to no avail.

We live in Woodbury, MN. We take our kids to Dr. C in MO.

My kids' headaches are their worst symptom. They are taking Tramadol with Tylenol for their pain.

Has your son been tested for co-infections?

------------------

so sorry for you, your family and jesse to be dealing with this but i'm glad that that neurologist tipped you off in the right direction and that you have been vigilant and already contacted the WI Lyme Support group and found a dr.

you're a great dad!

accolades aside there is so much to know and lots of work to be done.

since he is positive by Stonybrook lab he unequivocally has lyme disease. Stonybrook is very strict with the CDC criteria. so at least you are not in the land of ambiguity that many patients are with seropositive and seronegative tests.

first thing first read this:
http://www.ilads.org/burrascano_1102.html

this the ultimate lyme guidelines and will enrich you with a plethora of information. read it a couple of times because it is a LOT of info to digest.

the IV treatment is very dependent on which antibiotic is used, i'm going to guess though that it is rocephin, which is normally administered.

ask your LLMD about "pulsing" the rocephin (you will read about this in the guidelines) at 2gms twice a day. then adding metrondozinale (flaygl) on the weekends for "cyst form lyme" (you will read about this in the guidelines too).

you will also read about co-infections in the guidelines. make sure jesse is tested for this, if these are involved and aren't treated then a recovery will not be easily had.

testing for co-infections is normally done through a lab called igenex (www.igenex.com)

best of luck and stay in touch, since you are catching this early i believe jesse will recover well.

zip

since jesse is having sleeping problems the lyme may be affecting his hormones and a complete hormone panel, including growth hormone, tsh, cortisol, etc should be taken by his dr.

I am sorry your son is in so much pain. I am glad you were persistent in his treatment. It is very difficult having a sick child.

It just makes me so angry when I hear about these so called doctors out there who are supposed to "heal" you. Seems like they just don't care about finding the truth.

What works on the pain for me is asprin with codine. If the headaches are real bad ice packs also help.

Your son and your family are in my prayers,
Lisi

Welcome to Lymenet.

I'm glad your child is seeing at LLMD at this time, I'm so sorry that Jesse is in pain. And I know exaclty how you feel, it's amazing what lyme sufferes have to put up with..in hospitials or out of them..

Pain is a huge symptom with people suffering from lyme and/or co-infections.

I use mostly Mortin/apirin, but please talk to the LLMD about the kind of pain that he is having,(it sounds very severe) hopefully somehing will help.

My son Thomas also has lyme and a heart murmur, which has gotten better with treatmenet for lyme.

God Bless you all too, and very glad you got help right away from WI. Lyme Foundation, and
Lymenet.

I've literally moved my office into a spare bedroom at home, because my son needs attention 24/7. It's a full time job with one child having LD, I can't even imagine having two children infected simultaneously.

Our LLMD resides in Northern WI., it amounts to about a 2 hour drive for us, so it's tolerable for our son to make the trip.
We're in touch by phone with him, nearly every day, as he's instructed us to stay in touch regularly so he can monitor his treatment. He stated that our son has gotten an especially nasty dose of lyme, however, he's confident that he'll recover in time.

We've been fortunate in that his school has been very supportive. They've initiated a tutor who comes to the house a couple of times per-week. The girls in his classes initiated a great big "Get Well" card, which all the children signed. The boys on the football team brought over a signed game ball as they went undefeated and he missed the last couple of games. My wife had tears in her eyes when they all showed up unannounced. That support means an awful lot to him, and makes him anxious to get well and get back to his friends.

I've talked to so many people here in WI. who've had lyme, it's really almost to epidemic proportions. Tourism is a huge industry here so announcing our new tourism slogan as "Welcome to Wisconsin, Remember to pack your Doxycycline", doesn't exactly wash !
Once again, thank you all.

Welcome to Lymenet.

You certainly are a great Dad!

Re Leg and Chest Pain - have you started him on Magnesium supplements? Have you discussed this with your LLMD? I'm not sure what type of pain he has - cramping perhaps? The type that runs down the thigh and across the calf? Even starting in the sciatic area? (I had this for months not knowing what was wrong with me). It's usually indicative of low magnesium.

Sleep issues - definitely bring to the LLMD's attention. Lymies need good restful sleep nightly to help our bodies recover. I'm not sure what they can give kids, but it's worth asking about.

Keep reading and learning - especially about yeast issues and coinfections.

My three year old was infected over the summer and is being treated for Lyme.

Luckily for us, she had the bullseye rash and then I found this site. She had some of the same symptoms as your son... leg pain and had a hard time getting to sleep as well as some others.

Here is a link for new members that I found extremely helpful. Lots of good information! http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Also, someone suggested keeping a log of symptoms. I've been doing this and I find it useful when I talk to my daughter's LLMD. Our LLMD suggests treating until she is symptom free for 2 mos, so the log is helpful for that as well.

Your son is lucky to have you on his side!!!
Best wishes and keep us posted,
Deb

Many, unfortunately, don't realize how serious lyme can be and don't even consider this horrid disease, doctors and patients alike.

It's all too familiar, your duck stories. My son's major symptoms were pain and dysfunction in the urinary tract and his highly regarded pediatric urologist was hinting at Munchausen by proxy on several visits and in her letters to my pediatrician. I pushed for lyme testing with another doctor and he was positive, my daughter was too. With treatment his symptoms resolved and so did my daughter's.

You're doing a great job and I'll pray for healing and relief from pain. Continue reading and three cheers for you for getting your diagnosis and LLMD!!

Blessings,

probably don't want to think about it now because your priority is getting jesse well, but with the positive stonybrook test you have a definite case against the hospital that said jesse had "post viral syndrome" (which does not exist) and sent you home with pain relievers.

did they even test him for lyme? the fact that they discontinued his abx therapy is also highly negligent.

you already have a lot of bills, and may have a lot to come. you may want to contact a malpractice attorney about this case.

the sinus condition is indicative of an immunocompromised condition, which would happen in lyme. his t and b cell levels may be down which will make it harder for his immune system to fight the lyme.

I am so sorry to hear about your experience! But I'm glad you found an LLMD. Welcome to this site. There are many wonderful people here!

Have you read the links for newbies yet? There is some good information there. It sounds like you already know a great deal from your research.

About your son's chest pain ---
Chest pain was one of my worst and most persistent symptoms.

Definitely get it checked out to rule out any cardiac involvement. But know also that my LLMD said that chest pain is a common Lyme symptom. The Lyme bacteria love to wreak havoc in the nerve roots in the spine. There is a nerve that wraps around the rib cage and has a nerve ending on either side of the sternum. The bacteria can inflame this nerve and also cause sharp pain at the nerve ending and diffuse pain in the soft tissue surrounding the nerve.

When it is sharp, it is very very sharp.

My LLMD was the first doctor to know what the heck I was talking about. All cardiac involvement had been ruled out.

I tried the pain meds that are useful for nerve pain (amitriptyline, nortriptyline, neurontin) and they all had difficult side effects and did not help in any case.

I tried nerve block injections at a pain clinic, and I would caution you about these. Perhaps because of the steroids, it made my pain worse.

Now I am on a slow-release form of morphine called MSContin. It is the one thing that has worked for the pain. I can keep on a constant and pretty low dose; the "slow release" part really helps. With other narcotics taken every 4 hours, blood levels of the drug would go up and down and I'd never really get ahead of the pain.

It is hard to make the decison to take narcotics; likely it will only be needed for the short term if you go that route.

There are also slow-release forms of pain medicine (narcotic) in patches called Duragesic patches. I understand these can be pretty strong; but they work when there is severe pain involved.

I also want to second the advice that others have given you about testing for co-infections. The acuteness of Jesse's illness suggests to my admittedly limited (and non medical) mind that a co-infection *could* be involved. Do you know about these? Bartonella, Erlichia, and Babesia. They can make one pretty darn sick, and need to be treated with particular antibiotics of their own.

Please take heart! Getting an LLMD was a lot of the battle for many of us. And you have a positive diagnosis which is also a large part of the battle. Children have untold resources and resilience -- have faith in his bouncing back (although it may take some patience).

Wishing you the very very best.

Welcome to Lymenet

Neurontin helps my pain now, but in the beginning the only thing I got for my pain was 800mg ibuprofen which didn't do anything.

My pain now is nowhere as strong as it was in the beginning. Perhaps Dr. Jones (pediatric LLMD in CT) would best know how to handle pain for Jessee? Maybe your LLMD could contact Dr. Jones? (Dr. Jones is the only doctor name we mention here. Other LLMDs we refer to with the initial of their last name only).

Everyone has given you a lot of great info to think about. So just wanted to welcome you, your wife & Jessee. Glad you found us!

so take heart..there is light at the end of the tunnel..my daughter was so bad ,she couldn't even lift her head or go to school her sophomore year of high school...now she's just finished her freshman semester of college in Boston and doing great!

don't give up..hang in there...if you choose to go to dr. jones, trust him and do everything he says. Make sure you encourage your kids to exercise, even if it's just a little bit a day...that's what helped my kids too...he's wonderful...

I"ll be keeping a close eye on both of them..but with the supplements and the herbal dr. etc...along with dr. jones we did it! They're both playing sports, and kady even got a lacrosse scholarship to college.....

I wish I could have him as my doc...I wish my case was like theirs..I've had mine so long, it's much more complicated..I always sneak in questions when I go see him with my kids! lol

keep comign back, and if you want his phone number etc..it's ?Dr. charles Ray Jones
New Haven, Ct.
1-203-772-1123

alot of people stay inthe Ronald McDonald house there when they go....he's wonderful...

I"ll keep you all in my prayers, and like the others said , I'd check out coifections...babesia likes the legs and chest for pain....

lla2, great news that your children are healthy again ! The love a parent has for one's child supercedes any nonsense that Ducks can throw at us. Hopefully, you find peace and help for your affliction as well.

Henson, the symptoms you describe are verbatim what my son experiences regarding chest pain. He has a dull pain throughout his body 24/7, but then experiences these intense, sharp, stabbing pains [nightime]. You can literally see him turn pale with the pain. These pains normally hit his chest, ribs, just above the eyes, and legs. The chest pain seems to bother him the most.

He's had two ECHO's done within the last 60 days, which both looked very good. We're confident it's not his heart, but the pain is being caused by the lyme.

We have him on a multivitamin, magnesium, extra vitamin C, acidophilus. We're also making sure that he eats at least one cup of yogurt per-day. I've done some extensive reading on yeast problems.

I'll be following up on many of your suggestions, including testing for co-infections. Definitely, will be insisting on testing. Thank you also for providing Dr. Jones's number, we'll be in touch.

His sensitivity to light. I've had this for 34+ years. Never knew it was caused by lyme until my 7-04 dx!

You can find out more about this by going to:
www.marshallprotocol.com

do a search for NoIR sunglasses; which is NO infrared or UV sunglasses.

Noir has a site: www.noir.com ...not sure of the ending due to my brain fog.'

It's nos. 901 and 907 to look for large wraparounds over your existing eye glasses.
You can find the photos & prices there. 1 was $48; other $24 ONLINE prices.

Mention the Marshall Protocol if you are going to buy & they will give you a disc. of 20-25%!

I had my local eye wear store order these; I was charged MORE than online & no disc!

But Jesse should get the light amber ones for inside your DARK home for tv/pc/reading if he can.

Dark ones for outside in sunshine.

Doxy makes the eyes even more sensitive than before. Mine are 200% worse than before.

These lenses really help with the pain I go thru. It's like looking directly at sun.

Jesse should be in really DARK rooms; no lights. You can read about that on the MP board too. Too much vitamin D gets into our systems thru our eyes.

quote:

---

Originally posted by NP40:
Hello everyone, I've been reading the board for a couple of weeks and decided to register. My name is Mike, and my son [Jesse] is lyme infected.
Jesse's odyssey started in October of 2004, when he initially complained of leg pain. He's been going through growth spurts, so we naturally assumed that he was experiencing growth pains. However, after more severe sypmtoms manifested, we knew for certain that it was much more than this.

His pediatrician tested for lyme and of course, it showed up negative. She referred us to a neurologist who's son had just gotten over lyme. He performed an MRI and said it was identical to his son's MRI. He started Jess on doxy. After about a week of this treatment he attended school one morning when the nurse called and said that he had become dizzy, and was complaining of chest pain. We rushed him to the ER, where they performed a multitude of tests. They detected a heart murmur, but were puzzled as to it's cause. Without a definitive lyme diagnosis, backed up by positive blood work, they refused to state this was the cause of his distress.
We brought him home from the hospital, where he promptly laid down in bed and fell asleep for about 5 hours. Upon awakening his leg pain was so severe, that he could barely get out of bed.
My wife and I packed him up into the car, and drove to a very renowed hospital about 45 minutes away from our home. His hospital stay amounted to a total of 6 days, where the only real relief he had gotten for pain, was from morphin injections. All other pain killers had a negligible effect. A team of specialists conferred, poked, prodded, spinaled, x-rayed, and just about anything else you can think of. His tests all looked pretty good, he was negative for lyme, however, his ANA count was high, and his monospot was positive. Of course, at the time, we had no idea that this was conducive to lyme. Boy, have we gotten educated quickly!
We were sent home, and his doxy was discontinued by the hospital staff, in place of pain relievers, which didn't help. His symptoms continued to worsen. Severe headaches, leg pain, chest pain, fatigue, inability to sleep, neck pain, dizzyness, trouble concentrating, light sensitivity, the whole gamut. The hospital informed us that this was probably a post viral infection of some kind, as he had a root canal for an infected tooth, done some weeks before. He also developed a sinus infection about this time. So the "post viral infection" seemed somewhat logical.

However, his symptoms continued to worsen, and we continued looking for answers, as it was becoming clear to us that this was more than a viral infection.

I contacted the WI. Lyme Foundation as I had been reading per the interent about lyme and it's various symptoms. We live in Northern Wisconsin and are surrounded by forests, and my son actively hunted, and ATV'd in the woods across the road.
The lady that runs the lyme association in our state contacted me by phone. We discussed his blood make-ups, symptoms, etc. She suggested strongly that he may have lyme, and referred us to a competent LLMD.

The LLMD has him on doxy and omnicef for approximately a month now, with no noticable improvement. His blood work was redone and sent to Stonybrook, where he tested positive for lyme. My son will be starting IV treatment next week, so we're hopeful that we can beat this insidious illness. He's scheduled for a two month IV treatment initially which we will be administring at home.
As so many of you know, it's horrendous to have your child suffer while not being able to offer any help. We've run the gamut of doctors, dealt with their rudeness, and complete inability to deal with this disease. We've been given the old "it's all in your head" routine. Needless to say, Ducks are no longer in our son's treatment equation.

His pediatrician wanted to see his positive lyme results, but I decided not to authorize the release of that info. Why, involve her, when she isn't part of the treatment ? I even had one so called "infectious disease specialist" send me a letter, where he went completely out of his way to tell me how wrong I was to believe that my son may have lyme.
Our insurance has probably paid out upwards of $40,000 so far, where a competent lab, $200 of bloodwork, a couple of hundred bucks of anti-biotics would have been sufficient, if it had been diagnosed correctly. Believe me, I sent a letter explaining all of this to my insurance company in no uncertain terms. How insurance companies think their saving money, is beyond me ! Pennywise, and pound foolish !

I'd like to ask you all a question. Are there any meds that you've had success with, in treating pain associated with lyme ? The worse pain is in his chest, head, and legs.
We've tried numerous things, but to no avail.

Additionally, this child has terrific difficulty sleeping, namely falling asleep. He hasn't fallen asleep before 3 a.m. since early October, and consequently neither have my wife or I.
Any feedback and support is appreciated, and bless you all. I thank God I was able to find this forum, and a special thanks to the lady who runs the WI. Lyme Foundation, she saved my son's life.

---

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
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Thank You,
Julie

I too had a hard time replying when I started. I just could NOT find the reply area.

It's located at the top and very bottom of board in BLACK area...post or reply.

You do NOT need to use the "quote" area when replying to someone's particular post.

It takes a lot of space plus the excessive bold makes a harder on our sensitive eyes anyway.

You could use the "quote" button, but then DISABLE the BOLD, and just use "quotes" only for the part you wish to discuss.

quote:

---

Originally posted by juli847:
NP40, Hi I noticed you are from Wisconsin. I have not been diagnosed with Lyme's but have been having many of the symptoms. I am from Central WI (Oshkosh Area) and I am hoping you could send me in the right direction from your experiences.

Thank You,
Julie

---

So sorry to hear about your son being so sick. With the help of a good LLMD there is hope at the end of the tunnel!

My son was diagnosed with lyme at age 6 and my daughter at age 5. My son is now 8 and my daughter is now 6.

My daughter was very sick with sever vomiting episodes every 4 - 6 weeks ( she would vomit ewvery 10 mins for up to 6 hours until she passed out), she had no appetite, horrible night terrors that kept her awake most nights, headaches, night sweats..etc...she looked so sickly.

Today, she is almost "cured" She looks so healthy and has a beautiful smile. We are amazed at her progress...She is down to 1 Zithromax pill a day and I am hoping that she will go off all meds at her next follow up in February.

My son, who had more severe symptoms, such as knee pain, chest pains, headaches, light sensitivity, tender joints, back aches, testicle pain, bladder problems, neuro symptoms, mixing up his letters, reading difficulty, extremely sensitive and crying spells,...etc.....

Is now a new child..he is doing wonderful in school, is reading above grade level, he is able to play baseball again!!! and though he still has some minor joint pains, and neuro symptoms, he is doing remarkably well..

He too will see his LLMD in February and I think he will be able to go from Zithromax and Cedax twice a day to one Zithro a day.

I just wanted you to know that there is a light at the end of the tunnel. I was diagnosed with lyme in 2001 and spent most days on the couch numbed with pain pills...

And both my children were very sick from lyme...

But with the help of our LLMD's and prayer..we are all doing so much better. I have been off antibiotics since April of 2004 and my children are both on the road to recovery.

Watching your children be sick from this disease is awful..something only those of us who have experienced it can understand.

But I am here to offer you hope...

I was told by the great Dr.Jones, that children are resilient and with treatment, most children will have a 100% recovery from lyme...

And I believe him..as my children were so sick 2 years ago, my son wasn't even able to play baseball as his knees and chest hurt so badly...and my daughter was passing out from vomiting so much...

And today I fall to my knees with gratitude that my children are getting healthy again and are able to just be kids.

I cried when my son was able to run the bases at baseball last year..and my daughter has only had 1 vomiting spell in over a year...

The things most parents take for granted..like a child being healthy enough to play, are things I am eternally grateful for..
I will never take one second of my childrens health for granted!

I will be keeping you and your son in my thoughts and prayers and pray that he too will start feeling better.

God Bless,

My son's symptoms are very similar to what your son experienced. My son received his PICC line today, and a new set of pain meds. The nurse left the house not too long ago, having instructed us on proper IV protocol. My son seems upbeat today, he feels there's finally hope that he can rid himself of this horrific disease.

My son was playing football for his freshman team when the lyme flared. Him running up and down the field seems like a distant memory at this point. I know exactly how you must've felt when you saw your son run the bases for the first time, in a long time. I long for the day as well.

I am so very pleased to hear that you have connected with an LLMD. Your son is on the road to recovery!

I am VERY interested in the beginning of your story where you said the your son's intitial MRI was "identical" to the neuro's son's MRI. Could you please provide all the detail you have about that. Or even get the Neuro to contact ILADS with the findings of the MRI.

Lyme Disease has a casual association with white matter lesions. But there is no standard to which they are evaluated.

His opinion could be very valuable.

Feel free to e-mail me with any questions.

Keep on, keepin' on!

Do I read this correctly that your son's pain and other symptoms became more intense after treatment with the doxycycline that the neurologist prescribed? If that was the case, I believe your son was dealing with a herx. A die-off reaction or also called a healing crisis. It is when the pathogens are dying that they release a toxin that makes us feel really bad. Generally it manifests as your original illness symptoms but more intense. Symptoms like the flu. Or sometimes, one can develop new symptoms.

What do you do for this? Both my LLMD and Nurse Practitioner caution against allowing the herx to become too intense. It ends up being counter productive to the healing. And also is obviously hard to experience. So they recommend that the antibiotic be stopped temporarlily until the symptoms pass or become bearable. Check with your son's doc about what he recommends in regards to dealing with a herx.

Obviously, pain meds are needed if there is a high level of pain. But there are some other things I have found helpful. My teenager won't take a bath. But epsom salt and hydrogen peroxide baths help with pain. Start with 1/2 cup of salts and 1/2 bottle of H2O2 in a hot tub bath. It is good to do this in the evening because most people feel sleepy after these baths. Work up to the full recipe of 2 cups epsom salts and a full bottle. I have a PICC line, so I wrap the area with Glad cling wrap/tape and keep my left arm resting up on the rim of the tub. I have found these baths good for deep muscle aches.

Benadryl is good to minimize a herx reaction. If it is at night, I take a full dose. If it is during the day and I don't necessarily want to sleep, use pediatric benadryl taking only about 5 mg.

High dose Vitamin C also helps with a herx. Start with about a 1000 mg and work up to a what they call "bowel tolerance". Ramp up the dose until diarrhea occurs, then drop the dose slightly and that's the dose that you tolerate. My NP likes me to take about 5000mg day. I have a friend that uses this for her pain. I personally have a hard time with vit C because I get nauseated easily but there are brands that are stomach friendly.

Lastly, the lemon drink. Take a whole lemon and after washing, blendarize with 2 cups of water/ice, 2 Tablespoons of olive oil and stevia to sweeten. Strain through a cheese cloth. This drink has helped my son feel better in about 15 minutes after drinking. I modify it for him: no olive oil and use sugar instead of stevia. But it does work.

Many times with this dreaded disease, it is not one thing that brings relief of symptoms but a combination that is more successful. Same thing when dealing with imsomnia sleep issues. Many times it is not one sleep med that works but a combo of meds in low doses.

Hope this info is helpful and that your son heals quickly and completely.

Best,
Karen

Earlier in my treatment I had terrible leg, ankle & foot pain. I too could not sleep until very late at night. Then I would get up to pee at least every hour before waking up way earlier than I used to. I would be tired all day but at bedtime I was wired.

I got huge, miraculous relief from a product I learned about here: Podi patches http://www.akgnaturals.com
(You can also call them with your questions)
These are patches you put on the soles of your feet at night to draw out toxins. The first night I used them I slept right through the night.

I use Podi Patches every night now. Other patches are available on ebay but they aren't nearly as good. My legs don't hurt in the morning any more. They get worse as the day goes on but it is bearable now.

Epsom Salt baths also help and when I'm not up to taking a whole bath I soak my feet in a bucket of warm/hot water with approx 1/2 cup Epsom Salts.

I also drink lots of filtered water. I think that the pain in my legs/feet/ankles is a buildup of toxins form the Lyme die off. It gets much worse every 30 days. I do all I can to draw out/flush away the toxins.

I hope this gives your son some relief.

Wishing you both a good nights sleep and recovery.
h&s