Lyme Disease...

[rivermobster]

Anyone dealt with this shit?? After years of strange symptoms, the doctors keep attributing to something else, we may have stumbled upon a diagnosis.

https://www.lymedisease.org/lyme-basics/co-infections/bartonella/

My son has these Exact same marks on his sides! And he has just about every symptom.

Now we just have see what Kaiser says. I can already tell it will be a fight...

 

[dread Pirate]

It's very common up here. I know several people living with it. Not a big deal, but you have to take medication. I know a couple older guys that weren't diagnosed for several years and are a little quirky. That may also have been from partying in the late 60's though?

Talk to a specialist as well. There's a lot of info out there, just have to dig for it.

 

[rivermobster]

It's very common up here. I know several people living with it. Not a big deal, but you have to take medication. I know a couple older guys that weren't diagnosed for several years and are a little quirky. That may also have been from partying in the late 60's though?

Talk to a specialist as well. There's a lot of info out there, just have to dig for it.

I fucking knew YOU were gonna know about this!!!!!

Tons of info. But, getting the doctors to buy into it is the problem...

 

[dread Pirate]

I fucking knew YOU were gonna know about this!!!!!

Tons of info. But, getting the doctors to buy into it is the problem...

I fucking hate ticks! You may have to come north to get someone who deals with this regularly. Lyme showed up here in the early 80's with cattle transferred from back east.

The tick has to be imbedded for at least 4 hours to become infected. Most say longer, but I don't take chances.

 

[HitIt]

Now we just have see what Kaiser says. I can already tell it will be a fight...

Lyme disease is serious shit and the effects can last forever if not properly treated. If you do your homework and think that you have a case and Kaiser tries to blow you off, dont ever give in. Kaiser *will* eventually grease the squeaky wheel. You just have to be persistent. Good luck.

 

[Ryphraph]

Wow!

I hope they get him squared away...

You would think they would just start the antibiotics just in case.

Ryph

 

[dread Pirate]

Lyme disease is serious shit and the effects can last forever if not properly treated. If you do your homework and think that you have a case and Kaiser tries to blow you off, dont ever give in. Kaiser *will* eventually grease the squeaky wheel. You just have to be persistent. Good luck.

That reminded me of an old neighbor. He's about 45 and was diagnosed with Lyme several years after he had actually gotten the disease. Thought it was arthritis. He occasionally has serious mobility issues when it flares up and sometimes can't get out of bed for a week or more. This has been going on for at least 10 years now. It's not getting better or worse for him. Catching it early and getting on meds makes all the difference.

I'd say screw Kaiser and talk to a specialist asap.

 

[rivermobster]

I fucking hate ticks! You may have to come north to get someone who deals with this regularly. Lyme showed up here in the early 80's with cattle transferred from back east.

The tick has to be imbedded for at least 4 hours to become infected. Most say longer, but I don't take chances.

My daughter got one in her head whike we were camping on the Owen's river. Quick trip to the hospital and that was it.

My son has no recollection of ever having one. But as much time as we have spent in the Sierra's, I would guess that's where this came from.

 

[Ryphraph]

I fucking hate ticks! You may have to come north to get someone who deals with this regularly. Lyme showed up here in the early 80's with cattle transferred from back east.

The tick has to be imbedded for at least 4 hours to become infected. Most say longer, but I don't take chances.

I've gotten ticks on me hiking about 20 minutes from Rivermobster's house so they are an issue here too!

 

[rivermobster]

Wow!

I hope they get him squared away...

You would think they would just start the antibiotics just in case.

Ryph

From the homework I have done, only certian ones work. But it has to be properly diagnosed first.

They have blown off most of his symptoms as normal kid stuff, but it's not getting better, and my wife just stumbled across these pics. It's a direct match for the rash he has on his sides. So we will see what they say.

I have a feeling they won't have anyone familiar with this sorta thing, here in So Cal.

 

[Ryphraph]

From the homework I have done, only certian ones work. But it has to be properly diagnosed first.

They have blown off most of his symptoms as normal kid stuff, but it's not getting better, and my wife just stumbled across these pics. It's a direct match for the rash he has on his sides. So we will see what they say.

I have a feeling they won't have anyone familiar with this sorta thing, here in So Cal.

It is definitely not common here. Most Drs should be familiar though based on the publicity over the last few years.

 

[dread Pirate]

My daughter got one in her head whike we were camping on the Owen's river. Quick trip to the hospital and that was it.

My son has no recollection of ever having one. But as much time as we have spent in the Sierra's, I would guess that's where this came from.

We often get tick bites, but we are also very diligent in checking for them. My wife has drastic relations to their bites and has gone in several times for precautionary treatments. At this point our doctor has decided she has an allergic reaction to them.

When tick bites into you it is on the verge of starvation. They live their life in a cycle. Eat, then starve until they find a new host, eat and then fall off. After the tick bites it sucks just enough blood to sustain itself for a short time. It will then "fall asleep" due to exhaustion. After a few hours when it "wakes up" it will start circulating your blood through it's body which is when you can contract the disease.

Not all ticks carry Lyme. Only certain species and it's a small percentage of those who actually have it. In the last 10 or so years it has really spread and is becoming more common.

 

[HitIt]

I just did a quick google search for "Kaiser lyme"

https://www.google.com/search?q=kaiser+lyme&ie=utf-8&oe=utf-8

Lots of people have had to fight Kaiser regarding lyme. Be prepared. If you go in knowing how they approach the problem, you might be able to use certain terminology or present certain scenarios that sort of force their hands. This was an interesting search result:

http://lyme.kaiserpapers.org/
http://lyme.kaiserpapers.org/lymevictimadvice.html

But if all else fails and you dont get timely results, get some independent testing done. A few thousand bucks is a minimal investment in your child's health.

 

[rivermobster]

I just did a quick google search for "Kaiser lyme"

https://www.google.com/search?q=kaiser+lyme&ie=utf-8&oe=utf-8

Lots of people have had to fight Kaiser regarding lyme. Be prepared. If you go in knowing how they approach the problem, you might be able to use certain terminology or present certain scenarios that sort of force their hands. This was an interesting search result:

http://lyme.kaiserpapers.org/
http://lyme.kaiserpapers.org/lymevictimadvice.html

But if all else fails and you dont get timely results, get some independent testing done. A few thousand bucks is a minimal investment in your child's health.

absofuckinglutely. I'll check out those links. Thanks. :thumbsup

 

[squirtnmyload]

Fuck ticks. They are very bad here in western PA.

I had a family member that got lyme last summer. Didn't really know he had it until he got a red ring near his under arm. Then one day he got dehydrated and weak. He spent a few hours in the hospital, got pumped full of antibiotics and was told to stay out of the sun for awhile.

After a few weeks, he was fine and has been fine since.

 

[dread Pirate]

It's a messed up deal. It's just a pill they give you if they think you may be infected that wipes it out early. If you don't deal with it early it's a lifetime of medication. The pill has no side effects, but they don't hand them out until they know that's the cause,,,,,

 

[HitIt]

If you end up going the private route, there are resources for you. This is a recent thread about Lyme docs in SoCal:

http://www.healingwell.com/community/default.aspx?f=30&m=3628762

LLMD stands for Lyme Literate MD.

 

[stephenkatsea]

Lyme Disease and MS share many of the same symptoms. But, not the rash with MS. When our daughter was 16 she developed the symptoms. She was playing So Cal travel softball at the time and was outdoors a lot. She was only 16. So, I called Ventura County Health and asked them how many cases of MS and Lyme Disease were known of in the last 5 years in 16 yr old females. MS there were none, Lyme Disease there were 14. So, Lyme Disease is encountered in So Cal. Unfortunately, in our daughter's case it turned out to be MS.

Sounds like you're staying on top of things. Hope all turns out well.

 

[rivermobster]

It's a messed up deal. It's just a pill they give you if they think you may be infected that wipes it out early. If you don't deal with it early it's a lifetime of medication. The pill has no side effects, but they don't hand them out until they know that's the cause,,,,,

He's had issues for years now, that we feel have been misdiagnosed.

Even though this is a fucked up deal, it feels good being on the right track. He's a tough kid. Hopefully he will get what he needs, or I'm gonna be kicking some ass!!!

 

[dread Pirate]

He's had issues for years now, that we feel have been misdiagnosed.

Even though this is a fucked up deal, it feels good being on the right track. He's a tough kid. Hopefully he will get what he needs, or I'm gonna be kicking some ass!!!

Youth is on his side. The older you get the worse it becomes.

 

[rivermobster]

If you end up going the private route, there are resources for you. This is a recent thread about Lyme docs in SoCal:

http://www.healingwell.com/community/default.aspx?f=30&m=3628762

LLMD stands for Lyme Literate MD.

My wife came across that term too. Thanks bro. Appreciate the links! She is probably looking at them right now. :thumbsup

 

[FreeBird236]

I don't know how much is hype, but some doctors are actually saying that multiple sclerosis is nothing but lyme disease. Good luck, it appears it can be tricky and sometimes hard to diagnose.

 

[rivermobster]

I don't know how much is hype, but some doctors are actually saying that multiple sclerosis is nothing but lyme disease. Good luck, it appears it can be tricky and sometimes hard to diagnose.

Indeed.

 

[stephenkatsea]

We learned Multiple Sclerosis is best diagnosed by a brain scan. "Multiple Sclerosis" literally means multiple scars. These scars appear on the myelin sheath of the brain. These scars are self caused by the over/improper action of the immune system and cause interruption of some neurological activity. Do not believe Lyme Disease produces these scars on the brain's myelin sheath.

 

[wsuwrhr]

, or I'm gonna be kicking some ass!!!

Let me know if you need help. I got your back.

 

[rivermobster]

Let me know if you need help. I got your back.

Yeah, you owe me for saving your life!!!!!!!

 

[stephenkatsea]

We found the Neurological Med Centers of UCLA and USC to be excellent. I got the phone number for one of our country's foremost neurologist from a UCLA web site. Dialed the number and HE picked up the line and said this is Dr xxx, how may I help you? I couldn't believe it. What a great guy, as were the Doctors at SC also.

 

[copterzach]

I got it about 15 yrs ago. Couple days in the hospital. Lots of antibiotics. Have been fine since then. But it was caught very early on.

 

[rivermobster]

We found the Neurological Med Centers of UCLA and USC to be excellent. I got the phone number for one of our country's foremost neurologist from a UCLA web site. Dialed the number and HE picked up the line and said this is Dr xxx, how may I help you? I couldn't believe it. What a great guy, as were the Doctors at SC also.

Good to know. :thumbsup

I got it about 15 yrs ago. Couple days in the hospital. Lots of antibiotics. Have been fine since then. But it was caught very early on.

Kaiser has been dragging their feet for years on this deal. I'm trying to stay calm at this point.

 

[wsuwrhr]

Yeah, you owe me for saving your life!!!!!!!

I had your back anyway.

Saving my life? All I had to do was let go of the anchor....I don't have quit in me.

But thanks, regardless.

fuckin water was cold.

Brian

 

[wsuwrhr]

Kaiser has been dragging their feet for years on this deal. I'm trying to stay calm at this point.

Fuck kaiser, the only thing good about their care is their commercials about good their care is.

Kaiser is good for people that are generally well, and basic medical care, broken bones, flu, ect. That is about it.

Take him to a doctor that is the best and pay their bill. Work out a payment plan if you must.

Brian

 

[rivermobster]

Fuck kaiser, the only thing good about their care is their commercials about good their care is.

Kaiser is good for people that are generally well, and basic medical care, broken bones, flu, ect. That is about it.

Take him to a doctor that is the best and pay their bill. Work out a payment plan if you must.

Brian

Couldn't agree with you more. :thumbsup

 

[wsuwrhr]

Yeah, you owe me for saving your life!!!!!!!

BTW, it is pretty hard to swim holding a rope tied to a sinking anchor.

I didn't get back to the boat as fast as I thought I should have.

That was a bit embarrassing.

 

[dread Pirate]

Some local info. I know you're a long way from here, but maybe a vacation with a purpose?? The local clinic, (don't think ghetto free clinic) has a couple doctors who are familiar with Lyme. I could also make a few calls and put you in touch with friends and their doctors.

https://northcoastld.com

 

[rivermobster]

Some local info. I know you're a long way from here, but maybe a vacation with a purpose?? The local clinic, (don't think ghetto free clinic) has a couple doctors who are familiar with Lyme. I could also make a few calls and put you in touch with friends and their doctors.

https://northcoastld.com

Cool bro.

We have an appt. today at 2 with his regular doctor to see what she says...

And Kaiser has us scheduled to see a genitisis Thursday, cause they think that is the issue.

Again, we just came across this Bartonelli issue last night, so we will see what happens today. I'll keep you posted for sure.

Thank you all!!!!!!!!

:thumbsup:thumbsup

 

[rivermobster]

BTW, it is pretty hard to swim holding a rope tied to a sinking anchor.

I didn't get back to the boat as fast as I thought I should have.

That was a bit embarrassing.

Every year something like that happens...

Last year, someone threw out an anchor...

With no rope tied to it!!!!!!!!! lol

All good fun. Glad I was there to help. :thumbsup

 

[wsuwrhr]

Every year something like that happens...

Last year, someone threw out an anchor...

With no rope tied to it!!!!!!!!! lol

All good fun. Glad I was there to help. :thumbsup

I heard that story. I know who, also.

"NOT TODAY!!!"

I had a rope tied to my shit, just too short for my toss.

Brian

 

[purrfecttremor]

My son through my brand new box in at Steamboat a few years ago and had tie the wrong rope on. Not funny at the time but one of those great memories from the past! To this day I can't figure out why I didn't dive in and try to grab the end as it was disappearing. Hell I think Steamboat couldn't be deeper than 50 ft. That's just one of many reasons I don't boat and drink anymore 🤔

 

[wsuwrhr]

I can tell you first hand it is pretty hard to swim holding an anchor.

My son through my brand new box in at Steamboat a few years ago and had tie the wrong rope on. Not funny at the time but one of those great memories from the past! To this day I can't figure out why I didn't dive in and try to grab the end as it was disappearing. Hell I think Steamboat couldn't be deeper than 50 ft. That's just one of many reasons I don't boat and drink anymore 樂

 

[Oso Viejo]

We found the Neurological Med Centers of UCLA and USC to be excellent. I got the phone number for one of our country's foremost neurologist from a UCLA web site. Dialed the number and HE picked up the line and said this is Dr xxx, how may I help you? I couldn't believe it. What a great guy, as were the Doctors at SC also.

UCLA and USC are great resources; what you need is an MD Board Certified in Infectious Medicine and finding one of those at Kaiser, and getting a referral, will be next to impossible. UCLA and USC have medical schools and finding a specialist, sometimes a world renowned specialist is way easier than trying to find one through your HMO.

Another, slightly lesser but maybe more accessible resource is Pomona Valley Medical Center who is aligned with Loma Linda University Medical School. Good luck with getting you boy better and yeah, fuck Kaiser.

 

[purrfecttremor]

It's so strange that a lot of today's diseases like Lyme, gluten problems and others were so rare or just didn't exist when I was younger. I'm fukin old!!
I hate ticks so much!!!!

 

[rivermobster]

UCLA and USC are great resources; what you need is an MD Board Certified in Infectious Medicine and finding one of those at Kaiser, and getting a referral, will be next to impossible. UCLA and USC have medical schools and finding a specialist, sometimes a world renowned specialist is way easier than trying to find one through your HMO.

Another, slightly lesser but maybe more accessible resource is Pomona Valley Medical Center who is aligned with Loma Linda University Medical School. Good luck with getting you boy better and yeah, fuck Kaiser.

That's what I'm gonna push for today. Thank you.

 

[rivermobster]

So his doctor was familiar with Bartonella disease! He is getting blood work done to test for Lyme and Bartonella. We are in X-ray right now, cause they are going to take a good look at his joints.

The kicker is...

He's gonna be 18 in June. So we are pushing for a referral to an adult doctor, rather than a pediatric doc. (infectious disease specialist)

I'm not good at being patient...

But at least it seems to be going in the right direction.

 

[purrfecttremor]

So don't be patient! You need to push them with all you've got. He needs this taken care of now!! Does his insurance run out at eighteen?

 

[traquer]

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.

 

[rivermobster]

So don't be patient! You need to push them with all you've got. He needs this taken care of now!! Does his insurance run out at eighteen?

No. We are good there. 👍

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.

Yeah, I'm with you. I want to switch insurers now, but since it's going it the right direction, I'll give em a little more time.

I am also filling out a whole bunch of complain paperwork now, to get the change in play if I need to.

I'm gonna work it from both ends, and be ready to bail if needed.

[emoji106]

 

[wsuwrhr]

So no Mafioso needed?

Weak sauce Mobster.

I'm gonna work it from both ends, and be ready to bail if needed.

[emoji106]

 

[rivermobster]

So no Mafioso needed?

Weak sauce Mobster.

Not just yet...

 

[wsuwrhr]

Not just yet...

So you are saying there is a chance....

Brian

 

[lebel409]

He's gonna be 18 in June. So we are pushing for a referral to an adult doctor, rather than a pediatric doc. (infectious disease specialist)

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