what ticks can do

[Keystonepaul]

Appreciate Tap posting the Tick protection thread- lots of good advice and lots of stories on what ticks can do to folks. thought I'd share my 13 year old sons story and what we've learned over the past 7 months:
end of August son got bronchitis, antibiotic knocked it out of him pretty quick, only he didn't get better- tired, lethargic, headaches, confusion, nerve and muscle coordination issues- speech became halting, movments slowed. Not all the above were there initially, but all joined the party eventually, and . These continued to get worse over the course of the next few months- obviously we got to the pediatirician days after the lethargy, etc started- eventually complete bloodowork, tests for this, that the other thing, repeated bloodwork, lyme disease tests, etc- NOTHING showed- lyme negative, repeated testing- got the other type of lyme test done as wel- trips to Hershey medical center- nuerologist, specialsist, etc, etc- NOT ONE THING PRESCRIBED, NOR DIAGNOSED, following any of these visits- pushed off from one specialist to the next. Got appt with a lyme-literate doctor, but not until March- called daily for cancellations- finally got one when we got 6 inches of snow mid December- drove 1 hr in 6 inches of falling snow- love the Subaru!!. paid 275 to send our bloodowork to California lab for 'Supersized" lyme test. after physical exam and discussion- we began Doxycycline, another antibiotic, and an anti-malarial drug. In addition to probiotics and teasil which brings lyme spirochetes out of hiding. We have continued these, and have added b-12 injections. Son stopped going to school in October and started 5 hours of in home teacher/ week as his movments got worse and worse- looked like a concentration camp survivor with muscular dystrophy, about the only thing he didn't have was actual muscle aches, just lethergy to the point of not being able to use the muscles well- along with a neurological component. Recovery has not been, nor should it be expected to be, leaps and bounds. It's been inch by inch, but it continues to inch in the right direction. We are currently up to going to school 3 days a week for 2 periods each day, plus meeting a teacher at the library 3 times a week for an hour as well. Moving up to 3 classes 3 times a week next week...

lyme test- there are a number of bands they measure that must show reactivity above 100, however that is determined. The CDC requires a certain number of bands to be positive (over 100) for lyme to be confirmed. NY state- for instance requires 5 bands, I believe. What we've been told is- several things- combined symptoms with any band being positive is an issue- that band is positive for a reason, lyme can compromise the immune system thereby bringing down the immuno response these tests are looking for- which is where all the false negatives and unreliablity of lymes tests come in to play, you don't get numbers for all the bands just positive or negative- you may have reactions on many that just don't reach 100, amd lastly, tests for other tick borne illnesses, babeseosis (spelling?), etc, etc, is even less reliable........Anyone in the Northeastern PA/NY, NJ area that needs information on the doc we used or just wants to talk about what they are going through can PM me and I'll get you my number and any infomation, I can. Good luck and take preventative measures when in the field!!!!

 

[buckvelvet]

Wow very sorry to read this store, glad he is doing better!

So since you didn't actually come out & say it, was there an actual tick on him somewhere that had burrowed in & not extracted?

 

[Someday isle]

Wow - sounds like you and especially your son have had quite a battle.

 

[Keystonepaul]

Wow very sorry to read this store, glad he is doing better!

So since you didn't actually come out & say it, was there an actual tick on him somewhere that had burrowed in & not extracted?[/QUOTE several that have been imbedded, no rash, no symptoms and we check pretty thoroughly each time so none, that we found were imbedded long- never a bullseye rash- which we all have come to know is not always present.

 

[buckvelvet]

Wow, thats crazy.

 

[j-bird]

Wow - I hope your boy continues to progress. I understand the small steps....and they are actually big ones. I have a daughter that has a fairly rare medical condition (neurological and nervous system related - it's like 1 in 10,000) and with as great as the medical community is in this country it amazes me how the doctors and even specialists in this country tend to simply run folks thru the process.....especially if your not in a major metropolis type area. You feel like you get the old "well the book says....." sort of responses and they seem almost defiant to dig deeper for you. I have always been told that if your sick or not well and nothing seems to work to pursue the Lyme's topic. It can be nearly impossible to prove out, but in some cases that is exactly what it is. Obviously it isn't that easy, but like with my daughter you look hard enough you will eventually find some help. It's just frustrating that it can take a while for that process to happen and you spend all that time and money along the way. The time is the biggest issue, symptoms tend to get worse over this time of searching and searching and as a parent you feel helpless. Finally you find some help, but the road to recovery is much longer because of all the delays along the way. Good luck to you, your boy and all those helping you along the way.

 

[MA VT Flatlander]

https://www.lymedisease.org/members/

 

[S.T.Fanatic]

I just heard yesterday that research is finding that alzheimer's/dementia may very well be tic related.

 

[bbcoach]

Glad your son is doing better. As most have posted, ticks aren't anything to mess with. Lyme and Rocky Mountain Spotted Fever are just a couple of ailments associated with ticks. If you are headed to the woods this spring, make sure you get and use the permethrin.

 

[Bowsnbucks]

I hope both young ones continue to get better. Nothing worse than having a son or daughter with anything other than a " simple " illness - if there IS such a thing as simple anymore. Ticks, mosquitoes, certain biting flies ........ all can carry diseases that can wreak havoc on a person. Light-colored clothes, tucked-in pants, permethrin - all necessary these days.

Just to shed a little light on medical care - I have a doctor in the family and he's told me sad tales of patients that should have had tests run for various conditions and their medical insurance would not pay for those tests. This isn't because of " Obamacare " - it goes back 20 to 25 years. He was the head of internal medicine at a large medical center before he retired a couple years ago. He told me the insurance companies were the ones calling the shots in many cases when it came to tests and treatment regimens. He and many other doctors were so fed up with the " system ", some of them were retiring early or stepping down to practice in walk-in " quick care " offices instead of continuing in specialized medicine at a higher level. He spoke of constantly having to go to battle with insurance companies for the majority of patients, to the point where practices would have separate employees JUST to handle the back & forth red tape, calls, e-mails and faxes with insurance companies. He said it felt like everything was a fight for testing and treatment, and the people making the final decisions weren't even doctors - but insurance company bean-counters and executives. He and many of his colleagues were tired of being questioned about every test, every recommended treatment course, etc., like they knew nothing ....... by NON-PHYSICIANS !!!

My sister has had RA from an early age and she's had to fight with the insurance companies for years for treatments that have kept her out of a wheel chair and able to do normal daily tasks. I get what you guys are dealing with that have RA yourselves or a family member has it. I wish you & them the best in dealing with it.

I've heard the same complaints from my own doctors in various fields of medicine. That's why so many doctors are now moving to have patients pay for things up front and they submit a bill to the insurance company with the idea that the patient will eventually get reimbursed by the insurance company. The doctors' offices are sick of fighting with insurance companies and waiting, waiting, waiting to get paid. So YOU have to fight with the insurance companies and not the doctors. My wife and I have gone through this very thing - even for simple things like strep throat, bronchitis, broken finger, etc. EVERYTHING'S a fight with the insurance companies. BTW - they ( ins. companies ) have one of the most powerful and well-funded lobbies in D.C. with GOBS of money going to members of Congress. It doesn't matter what political party any of us belong to either ........ we're all getting screwed when it comes to medical care anymore. The insurance companies want it to be the individual on his/her own with no clout to fight them. If the American Medical Association has their hands full in dealing with the insurance companies, how do we think we, as individuals , will fare ???

Best of luck to all who are ill or have some condition - GOD FORBID it's a pre-existing one.

 

[Keystonepaul]

appreciate the thoughts and the knowledge also shared folks.
J-bird, thanks for sharing yourself, and will keep a postive thought and prayers for your daughter as well. you are right about the delays. If I had to do it over I'd have procured some doxy from somewhere when we first suspected lymes.....

 

[Knehrke]

Tics are foul creatures for sure, but I'd take the Alzheimer's comment with a grain of salt. I sit on the NOMD study section which reviews Alzheimer's grants for the National Institutes of Health, and I haven't seen anything pointing in that direction. Yet, of course. It's always possible.

And IMHO, I agree with the comments above, patient's rights are poised to take a plunge with the new regime. It's good to hear that you were such an advocate for your son! Unfortunately, you have to be sometimes to get through the cookie cutter process. My best wishes to him.

 

[Reagan]

Tics are foul creatures for sure, but I'd take the Alzheimer's comment with a grain of salt. I sit on the NOMD study section which reviews Alzheimer's grants for the National Institutes of Health, and I haven't seen anything pointing in that direction. Yet, of course. It's always possible.

And IMHO, I agree with the comments above, patient's rights are poised to take a plunge with the new regime. It's good to hear that you were such an advocate for your son! Unfortunately, you have to be sometimes to get through the cookie cutter process. My best wishes to him.

Do you think patients rights improved with the old regime?




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[Knehrke]

Yes

 

[MA VT Flatlander]

I was diagnosed with Lyme and co infection Bartonella . Test was done by IgeneX, Inc. in Palo Alto,CA

 

[Reagan]

Yes

From looking at your posts, I see where you are from.

That explains it all.


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[Knehrke]

I suppose I should take offense, but I'm just too darn amused by the snarkiness...please, feel free to dismiss fifteen years of training and another fifteen of direct experience in the field. My credentials don't matter. My opinions are certainly informed by where I live .

 

[Reagan]

Are you a doctor? Do you work I the medical field?

If you do and you still think Obama was good for your industry, I would say that reinforces my statement above.


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[Bowsnbucks]

I'll say it again - it DOES NOT MATTER if you're R, D, I, GP, L, Zebra stripe party - If you have to buy your insurance and it's not provided as a benefit from your employer ( and even then more and more employers are requiring employees to pay more out-of-pocket and take on larger deductibles ), it's you against the insurance companies. If you think you can win that argument if you or your loved ones have a medical problem, I guess you're looking for the Easter Bunny too.

The Obama plan wasn't perfect - and he said so - but at least the insurance companies couldn't deny coverage for pre-existing conditions, and parents could keep their kids on their insurance until they became 26 years old. The latest word on those 2 items is that they may disappear to appease the far-right Congressmen / women who want the health care plan stripped out even more. Why not tweak the " Obama-care " plan and fix the parts that can be improved. If you take the politics out of the lip-flapping, we ALL need affordable, comprehensive health care ......... regardless of which party anyone belongs to. LOTS and LOTS of Republican folks - good, hard-working, tax-paying people, - are going to be hammered if the gutted-out plan becomes law. The same goes for good, hard-working, tax-paying Democrats, Independents, Libertarians, Green Party, you name it. The math is the math. If the " new and improved " plan is 1000 pages of drivel that add up to ...... " if you can afford a good plan out of pocket, you'll be good to go - and if you can't .......... well, that's too bad, and that's tough luck ", then people of ALL political affiliations will be suffering, and possibly dying. I read an article in our local paper by a syndicated woman columnist recently that basically said those very things !! She even mentioned " lazy " and " didn't attend the right university " in her article !! How aloof does she place herself ???? ( For those who call themselves Christians, does this sound like a method/plan that JESUS would approve of and enact ???? ) " If you can pay, you'll be treated and cured. If you can't pay....... sorry. "

If that thought process wins the day, and we get a set of " choices " to purchase, the good plans with names like " Platinum, Gold, & Silver " - will be unaffordable by many, many people. Millions of people could not afford any medical insurance before the " Obama-care " plan came into being, and we were all paying for them by our increasing premiums in our own plans. If we go back to the " every man for himself " mode, we'll be right back where we were before and we'll again be paying for all the uninsured with ( once again ) our own rising premiums.

An interesting point to me is this - one of the biggest complaints by the Republicans has been the " mandate " that everyone must buy or secure health insurance. It caused a major, national outcry from the right that a mandate is outrageous, an infringement on one's rights. But after Mitt Romney made the same mandate the law in Mass., no such outcry was made by the right then. No fist-pounding like we saw in Congress. Where were the self-righteous lip-flappers back then ????

One other thing - If this kindergarten-level name calling / labeling keeps up and becomes the norm for our country, prepare for a HUGE fall. Our national problems will ONLY be solved by cooperation between all people from all political stripes. Labeling someone as a problem based on what state they come from is H.S. There are good, honest, hard-working, God-fearing people from all political parties. How does that saying go .......... United we stand, divided - WE FALL.

 

[Knehrke]

Amen. Let's get back to talking ticks.