Lyme Disease...

[rivermobster]

Not the best time for this, but how's he moving towards Eagle? Leadership, not work...hoping everything works out.

His project is thiz weekend. More in a bit...

 

[Flyinbowtie]

Joe;

I have had family get this crap, keep the head of steam you have now and don't take no for an answer once you have a confirmed diagnosis don't let them blow you off or minimize the need for treatment. I have 3 guys that are shirttail relatives and firefighters up here. 2 of the three have been hit with this 20 plus years into their careers, and it ain't no joke.
Like DP said it is controllable with the right treatment and meds.
The days of me messing around in the pasture in tennis shoes are long gone, knee high rubber boots and I check myself every day I am out there. No more mowing in shorts, either. sucks, but gotta do it.

 

[rivermobster]

Joe;

I have had family get this crap, keep the head of steam you have now and don't take no for an answer once you have a confirmed diagnosis don't let them blow you off or minimize the need for treatment. I have 3 guys that are shirttail relatives and firefighters up here. 2 of the three have been hit with this 20 plus years into their careers, and it ain't no joke.
Like DP said it is controllable with the right treatment and meds.
The days of me messing around in the pasture in tennis shoes are long gone, knee high rubber boots and I check myself every day I am out there. No more mowing in shorts, either. sucks, but gotta do it.

Thanks bro, it's been bad for him. Sometimes the headaches will put him down for days on end! Then he comes back, just like normal, but now the joint pain is getting to him. He was in a wheelchair this weekend at Troop Camporee, just to keep the pain down. It's fucked up to see my kid, who has hiked Half Dome twice with me, having a hard time just walking around. I hope we are on the right track now.

Not the best time for this, but how's he moving towards Eagle? Leadership, not work...hoping everything works out.

It's funny you asked about this, cause we started his project tonight! He is rehabbing the bathrooms at Big Dalton campground this Saturday from 8-2. He is painting the outside of the building, so we (meaning me) went up there and pressure washed it tonight (he supervised me of course). I told him this is the only chance he is gonna ever get to supervise me, so he better enjoy it!!! He is also replacing the Gordon Rowley memorial flag pole that was damaged when a tree fell on it and damaged it badly. So he has a bit of work to manage this weekend.

He earned over a thousand dollars with his knife sharpening project so far. He loves knives, and already had some bad azz diamond stones, so I set him up with my grinder with a polishing wheel on it, I bought him a belt sander, and his grandfather donated him a really bad ass grinder/polishing machine. I can't sharpen a knife to save my life, but he is Amazing at it. We built a web site together to show off his stuff and try and round up some more business. Hopefully it will take off. We are not done with the web site yet (it sucks on a phone) but it looks pretty good on a puter.

http://thesharphouse.com/

If anyone needs Anything sharpened, I promise you it will be done right!

He has a few more merit badges to finish up as well, so even with everything else going on, he is still on track to get his Eagle. *phew* :thumbsup

 

[coolchange]

So how do you get a blade to your kid? Web site is cool, straight forward and to the point(pun intended). I've got a Gerber rib cutter that I've used for everything from shaving tomatoes (when it was new) to chopping firewood. Just UPS it?

 

[lebel409]

Normally it's perfume, gasoline or sports that waylays them before 18...sorry about the Lyme or whatever it turns out to be and hope he gets it all completed.

If he needs help with any MB let me know...

 

[rivermobster]

So how do you get a blade to your kid? Web site is cool, straight forward and to the point(pun intended). I've got a Gerber rib cutter that I've used for everything from shaving tomatoes (when it was new) to chopping firewood. Just UPS it?

Can you post a pic of it here? UPS would be fine if you're not around here. Thanks!

Normally it's perfume, gasoline or sports that waylays them before 18...sorry about the Lyme or whatever it turns out to be and hope he gets it all completed.

If he needs help with any MB let me know...

Are you a counselor for Environmental Science by any chance?

 

[coolchange]

Can you post a pic of it here? UPS would be fine if you're not around here. Thanks!

?

I used to work up on foothill, tired iron, but the closest I get to you is LaCanada now. Shipping is no problem.

 

[rivermobster]

View attachment 483036 View attachment 483037
I used to work up on foothill, tired iron, but the closest I get to you is LaCanada now. Shipping is no problem.

Yeah boy, that thing needs work!

We are at his Eagle project right now. I'll show this to him later and see what he says.

We have family in Tujunga, so I know right where you are.

I'll get back with you as soon as I can.

Thanks!

 

[rivermobster]

I'm sitting here listening to the senior patrol chat as they work...

The topic???

Politics.

Love these kids....

 

[rivermobster]

 

[rivermobster]

Progress...

Awhile back, I opened a complaint case with Kaiser. They have been following up, and we now have an appointment tomorrow with an Adult Infections Disease specialist! No more pediatric doctors for him.

They have run all the tests for Lyme and Bartonella, so hopefully the results will be in by tomorrow.

Progress. Finally.

 

[OCMerrill]

Progress...

Awhile back, I opened a complaint case with Kaiser. They have been following up, and we now have an appointment tomorrow with an Adult Infections Disease specialist! No more pediatric doctors for him.

They have run all the tests for Lyme and Bartonella, so hopefully the results will be in by tomorrow.

Progress. Finally.

Hoping for a diagnosis so he can be treated properly. We Love Anthony buddy. Sucks to see him struggle as he is such a tough kid. I know he just rolls with whatever but Fuck, enough is enough.

We left Kaiser last November. A couple things happened and we felt we needed more personalized care.

 

[rivermobster]

Hoping for a diagnosis so he can be treated properly. We Love Anthony buddy. Sucks to see him struggle as he is such a tough kid. I know he just rolls with whatever but Fuck, enough is enough.

We left Kaiser last November. A couple things happened and we felt we needed more personalized care.

Thanks Dave. That's my position too. I've had enough. I will be going with him on Thursday.

We will be leaving Kaiser if I don't get real results real soon...

 

[YoPengo]

Progress...

Awhile back, I opened a complaint case with Kaiser. They have been following up, and we now have an appointment tomorrow with an Adult Infections Disease specialist! No more pediatric doctors for him.

They have run all the tests for Lyme and Bartonella, so hopefully the results will be in by tomorrow.

Progress. Finally.

Give Anthony my best. Praying for progress and positive news.

 

[rivermobster]

Give Anthony my best. Praying for progress and positive news.

Thanks John. Will do. [emoji106]

 

[rivermobster]

Oh and...

Finished another merit badge yesterday, and will be calling label409's contact today.

So close now...

 

[Oso Viejo]

Progress...

Awhile back, I opened a complaint case with Kaiser. They have been following up, and we now have an appointment tomorrow with an Adult Infections Disease specialist! No more pediatric doctors for him.

They have run all the tests for Lyme and Bartonella, so hopefully the results will be in by tomorrow.

Progress. Finally.

Good to hear tha kaiser is getting off the dime.

Sorry it took so much sturm und drang to get you guys to this point though.:grumble:

 

[ChevelleSB406]

I had an ex with Lyme disease and had it very much under control, but symptoms still did flare up. I don't have much to add, but just a note to say that I will be thinking of your son and hoping they get an accurate diagnosis and appropriate treatment, and if it is Lyme, know that this can me managed quite well. Good luck Rivermobster and Rivermobster Jr.

 

[milkmoney]

Thinking of Anthony , for good results and a end to this.

From his so called funny friend. [emoji12][emoji106][emoji202]

 

[rivermobster]

Good to hear tha kaiser is getting off the dime.

Sorry it took so much sturm und drang to get you guys to this point though.:grumble:

I had an ex with Lyme disease and had it very much under control, but symptoms still did flare up. I don't have much to add, but just a note to say that I will be thinking of your son and hoping they get an accurate diagnosis and appropriate treatment, and if it is Lyme, know that this can me managed quite well. Good luck Rivermobster and Rivermobster Jr.

Thinking of Anthony , for good results and a end to this.

From his so called funny friend. [emoji12][emoji106][emoji202]

Thanks all. You guys rock. 👍

 

[BigHeart]

Thank you all for your support and advice. We are desperate for answers and help for our boy. This possible identification of his illness was not from any medical professional but from a friend in New York whom I've never met, but have known since we were pregnant together with our boys, nearly 19 years ago.

Three years of declining health, scores of appointments, a multitude of tests, hundreds of pills... and this is solved because of the human connection. Keep sharing folks!

~ Rivermomster

 

[rivrrts429]

It's so frustrating to see our kids struggle with medical issues.

I don't know much about what your son is experiencing but sympathize with his ongoing condition.

We'll be thinking about you all and hoping for a quick resolution. Keep us posted on his path.

 

[coolchange]

Not trying to interweb diagnose or anything just throwing out my story. My wife had a very serious arthritic condition that was basically un diagnosed. I wont go into details but a doctor figured it out finally. She has what was called Reiters syndrome. I think they call it Reactive syndrome or something now. She ate improperly dealt with shell fish and got a parasite. You can get it from other source's (bacteria etc.). Then the auto immune goes crazy. I think there is a genetic marker for it. Anyway, just search Reiters Syndrome, if anything it may give you more info when you go in to let Kaiser know you're not fucking around. Maybe test for the marker? Dunno? Pullin for you guys>

 

[BigHeart]

Not trying to interweb diagnose or anything just throwing out my story.....

Without non-medical interweb diagnoses, our son would *still* be suffering with no hope of a diagnosis or cure! Please keep sharing.... I would rather rule out 100 diseases than remain in the dark.

 

[purrfecttremor]

Omg RM I check this thread every day. You really need some good news from Kieser and quick! Your son really needs and deserves a break and soon! Thanks to you and to the members who actually have something to contribute and help! Hang in there it's gotta get better!

 

[Deja_Vu]

Wow, its crazy with the advancement of medicine that so many misdiagnosis still happen.

Prayers for a speedy recovery for your son.

 

[rivermobster]

So here is where we are at...

He tested positive for having Lyme anti bodied in his system, even though the doctor said he didn't have it!!! They ran two tests, one for Lyme and Bartonella. We StILL don't have the other one back yet!!! :grumble:

So at this point, he was willing to try anything to get some relief from all the joint pain. Seeing my son in a wheel chair was almost more than I could take. So we tried acupuncture, it had been recommended before.

I come home from work that day, and he is standing in the kitchen. I'm like, what's up? He hands me his cain and says "hold this". I'm like....ummmm...ok.

I take it from him, and he skips off down the hallway!!!!!!!!!!! He is now walking totally normally!!!!!!!!

I'm like wtf is going on here?!?!?!? He says he went to acupuncture today. It didnt hurt at all, and when i stood up, I could walk without any pain.

I'm in complete disbelief. It's like a real life miracle. I'm waiting for the other shoe to fall, but so far, it hasn't. This was last Wednesday I think, he went again yesterday, and is Still walking normally. I can't begin to explain my feelings right now. I'm still kinna lost as how this could happen.

My wife got us switched outa Kaiser, we will see his new doctor July first. He is another Boy Scout dad from our Troop, and has known Anthony for many years. He really want's to help with this mess, and totally believes in acupuncture. He says he has seen a few people fixed with it. It absolutely will not work for Everything, but it seems to work well for pain. I'm just elated he's walking again. He is quite blown away himself. We all cried a few tears in the kitchen that night. It's been an emotional week at our house.

He still has some minor issues that really need to be resolved. We feel we need to get him the antibiotics to kick this thing out of his body completely. It seems well dug in right now.

So...

New doctor on deck. He can walk again, but is still tired and can't think like he used to be able to. His migraines seem to be gone as well, but I don't want to speak too soon and jinx that! One step at a time I guess.

He's still a long way from going back into martial arts, but I can tell by fake punching him, his reactions are coming back too.

Thank god for any little thing we can get....

Thank all of you so much. It's awesome to have the support. :bowdown:

 

[wsuwrhr]

Big hugs bud.

Glad to hear some good news. Glad you are moving on from kaiser.

 

[wsuwrhr]

Wow, its crazy with the advancement of medicine that so many misdiagnosis still happen.

Prayers for a speedy recovery for your son.

They don't call it "practicing" medicine, or law, for nothin.

 

[purrfecttremor]

Wow great news!!!

 

[HitIt]

This all sounds like great progress. Great that you are out of Kaiser and now have more options. I also think that it is fantastic that you have a family friend that is an MD that wants to help but...

Make sure that you are working with a doctor that is familiar with Lyme and how to treat it. Acupuncture can be great for helping deal with symptoms. One thing to be very careful of is that you are not *just* treating the symptoms. You need to make sure that you are treating and dealing with the root cause, which is Lyme. While Western medicine definitely has some issues, we have also made significant progress with regard to treatment of diseases. I would still seek out a Lyme specialist if I was in your shoes.

Good luck to your family.

 

[HitIt]

My wife got us switched outa Kaiser

And one more thing... Fuck yeah for your wife! She sounds like she is all over this. Awesome to have a great teammate :thumbsup:thumbsup

 

[Flyinbowtie]

Great news Joe!

Acupuncture is the real deal, I think one of my family guys with Lymes is using it, I am starting to have some further deterioration with my spine and I am looking at it for myself, the sciatica is becoming more of a factor in my life than I want to allow it to be...
I hear about as much negative as I do positive about Kaiser, but the one consistent thing I seem to hear is that if you are battling something out of the mainstream then you need to get out, sounds like your wife was on that mission and made it happen. Good deal.
Hope the progress continues for your son, hope he makes his Eagle.
I didn't get far in Scouts. 6th grade?
Got kinda kicked out of WEBLOS. Scoutmaster didn't like me, (I had kicked his son's ass for screwing around with a disabled kid at school) and he embarrassed the hell out of me while on stage and in front of the whole pack/troop/families, in response to which I flipped him the bird, in front of same audience.
I was offered probationary status with another Troop/Pack, but Dad did some research and found out that Troop's staff was sucked in tight with the asshole. We I talked and I told him I was done. That jerk ruined the whole experience for me.

 

[rivermobster]

Thanks guys. We are gonna approach this by sending him out for all the normal tests, and my wife is on the hunt for a Lyme Literate doctor. Hopefully we will find one that will work with our insurance! Seems western medicine does not believe in chronic Lyme conditions. It's a very strange spot we are in...

Thank you all again. :tbi

 

[HitIt]

Seems western medicine does not believe in chronic Lyme conditions.

Not true. You are just beat down from the Kaiser experience. Good luck finding the right doc.

 

[lebel409]

I have Kaiser and it's been reasonable to our family for the most part, and not apologizing for them, but I think that because Lyme Disease is an east coat deal and Kaiser is west Coast, it's not on their radar like it would be for a national organization.

FBT, sorry you got the other Scout experiance...most have a real good memory of Scouting. I hear a story where a guy was life and had his Eagle project all prepared and ready to go. The troop was based on a Military base and the Troop leader/post Commander took the project from him and gave it to his son...He also got a single fingered salute.

 

[BigHeart]

Lyme Disease can be serious business. Save your son's life and do whatever it takes to get out of Kaiser and get to a specialist of your choosing ASAP! Even if it costs you 5 figures+ up-front, it will save you and your son a lot more financially and emotionally in the long run. You do not want this to screw up his life as he gets older!!

I harbor a deep-seated personal distrust, hell hatred, of Kaiser. Over 3 first hand experiences where they've seriously hurt members of my family or close friends due to their medical negligence, inexperience and their inhumane butchershop business model. Also you can't easily take them to court for malpractice, only to arbitration. PM me if you'd like more information. Kaiser doesn't exist to heal/cure you, they exist to collect insurance money. Run, don't walk.

^^^^ This. This is where we are right now. Yes, Kaiser has really fouled up, and they've done it in writing. I'm in touch with an attorney who has a LOT of success suing Kaiser. My minor child didn't agree to any arbitration clause so take me right to trial (I hope... we shall see).

The scary thing about all of this is the great divide in the medical community on whether "Chronic Lyme Disease" is real or imaginary. The doctor we saw claims that all bacterial infections are "self-limiting" and die off in the body. I guess he ditched school the day they covered Syphilis (remember the Tuskegee experiment?). So, you've got a huge number of doctors saying, "You got sick, it changed your body, but you're not still sick" and a handful of doctors saying, "Lyme can still live in your body, continue to make you sicker, and we can treat it." The treatments are all "experimental" because the mainstream medical community hasn't acknowledged it, let alone come up with a cure or treatment. Chronic Lyme Disease is where HIV/AIDS was 35 years ago.... it had a name but no treatment. The big difference is that people with Lyme aren't dropping like flies so there's no urgency to fix it. Bartonella, which we're SURE he has based on his rash, is even further behind in research. Plus, he might have babesia, erlichia, anaplasma and any of the Lyme co-infections he hasn't even been tested for yet.

So, yeah... we're hearing about $20,000 for the first year of treatment, out of pocket, unless we can find an LLMD around here who can work with/around our insurance. We are considering sending him away to live with relatives in Washington, somewhat near treatment, in a different environment where he can focus on his health and learn how to cook & eat in a way that starves out the creatures in his body. His life plans have been frequently adjusted (downward) from being a Navy pilot, to fireman, then "how can you be a fireman if you're stuck in bed for days at a time?" Getting his blackbelt is off the table. Two weeks ago I was thinking of putting him on disability... how can he work? How can he go to college when I have to read his school work to him and just doing classwork for two classes is a struggle?

And even if we decide to bite the bullet on $20k/year for treatment, which one is right? Each doctor has their own plan for a cocktail of antibiotics, herbs, supplements, detoxing, sauna, acupressure, acupuncture, etc. I'm researching, a LOT, and have two books to start and a whole new set of e-friends, many who swear by their treatment plans (and it seems like they are all different). Which one is right? Who has it figured out? Who can fix my kid and give him back his life??? ::sigh:: I know that Kaiser's plan -- doing nothing -- isn't going to help. There are just so many paths we could choose that it's hard to know which way to go.

 

[PVHCA]

Thanks guys. We are gonna approach this by sending him out for all the normal tests, and my wife is on the hunt for a Lyme Literate doctor. Hopefully we will find one that will work with our insurance! Seems western medicine does not believe in chronic Lyme conditions. It's a very strange spot we are in...

Thank you all again. :tbi

Demand a specialists with high regard, F any doc that has an issue with you guys getting a second opinion. Good luck and great news.

 

[rivermobster]

FBT, sorry you got the other Scout experiance...most have a real good memory of Scouting. I hear a story where a guy was life and had his Eagle project all prepared and ready to go. The troop was based on a Military base and the Troop leader/post Commander took the project from him and gave it to his son...He also got a single fingered salute.

Yes, sorry indeed.

Scouting has been Awesome for our whole family. We have made some life long friends, and had some amazing experiences. It has taught my son so many things he would have never learned in school. Leadership being the main one, along with all of the other knowledge he has gained as well.

We picked the Troop we did because of it's reputation. It's been around for since 1954 and we have close to 70 kids today. I can't recommend Scouting enough to any of you dads out there. We have kids coming from Rancho to the east and San Gabriel to the west. Check out our troop if you're anywhere in the SGV.

http://tr483.org/

I just posted a nice video on the website front page this weekend. It's definitely worth checking out. :thumbsup

 

[h2o225]

Holy smokes RM, Anthony and you guys have been through a lot. Hope he can beat this relatively fast. Sounds like your family is in the right track now.

 

[FreeBird236]

Just a side note. About twenty five years ago the doctors thought I had some kind of infection and put me on Ciprofloxacin for a couple of weeks, well it didn't really help so they continued it for about two and a half months until I could hardly move. Finally another doctor took me off and I immediately started getting better. Long story short Cipro messed me up and I still have joint and tendon pain. Some doctors think Gulf war syndrome is caused by the Cipro the soldiers took regularly in case they came into contact with anthrax. Not saying not to take the antibiotics, but ask about side effects because Cipro is not the only antibiotic that can cause problems.

 

[purrfecttremor]

Man RM you guys are in a strange and uncomfortable position. Let's hope these new options are the answer! Hang in there and we will keep sending positive thoughts!

 

[Flyinbowtie]

Big Heart;

You might find that it is worth investigating the doctors and treatment programs in Northern California. I worked with a Sgt. that contracted Lymes way back in the late 80's and the medical community up here might be a little further along in the treatment than the folks in SoCal. I know Stanford has a unit that specializes in Lymes, and there is a medical group in Chico, Ca. that is focused on it.

https://stanfordhealthcare.org/medical-conditions/bones-joints-and-muscles/lyme-disease.html

http://www.chroniclymedisease.com/llmd-referrals

This guy came up too,

http://www.yelp.com/biz/raphael-stricker-md-san-francisco

Keep after it, don't take no for an answer...you will get him what he needs and your insurance should cover it.

 

[BigHeart]

As long as rivermobster thinks he is making the decision, we should be able to move forward.

 

[rivermobster]

As long as rivermobster thinks he is making the decision, we should be able to move forward.

Why I oughta....

[emoji95]

 

[AFTERSHOCK RACING+]

AM glad he is feeling better :thumbsup:champagne: