Topic: After 22 Years of Being Battered by Lyme Disease.......
philly78
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......Woodbury Runner Is Liberated, Ready for New Hartford Triathlon
quote: Ray Kehrhahn lived with Lyme disease for 22 years. He just learned about it a year ago.
Last July, Mr. Kehrhahn--living in a near catatonic state, on disability, suffering from chronic fatigue and psychological symptoms and periodic blindness, and barely able to do much more than move from couch to bed--was finally properly diagnosed.
It first came from a doctor in Bridgeport, and then was seconded by professionals at the Lyme and Tick-Borne Diseases Research Center at Columbia University.
It was suggested in 1997 that he had Lyme so he was given a two-week treatment of antibodies that did practically nothing for him. But with new hope, a year ago he began an intense nine-and-a-half month session of intravenous antibodies. It made him sicker, but then it cured him.
``I just had an awakening,'' said Mr. Kehrhahn. ``It was a very profound experience after being so sick for so long.''
Once a happy runner, he hadn't donned a pair of running shoes in two decades. In fact, when his first symptoms crept up all those years ago--sore joints and malaise--he figured it was a combination exercise and aging.
The retired University of Connecticut professor and Woodbury resident is obviously older now, but by last December he had a new set of benchmarks, ones he never imagined possible as of June 2011.
Mr. Kehrhahn is back to his old ways, running as many as 70 miles a week and following a disciplined diet. He was in a 10-K race in May, and in October he will be running a marathon in Hartford,--and this weekend is the Litchfield Hills Triathlon in New Hartford. He is ready and able.
``I weighed 225 pounds last July, now I'm down to 157,'' he said.
It's about as close to a wish come true as anybody, especially anybody ill, could ever ask for.
Sara Guillemette became friends with Mr. Kehrhahn last autumn, and can't imagine him as anything except the marathon man he has become.
``I know Ray as an intellectual, vibrant, vegan runner,'' she said, ``period.''
The exclamation mark ought to come after he finishes his book on his struggles, wihch he expects it on shelves in 2013. For now, he just wants to build awareness about undiagnosed diseases, it does happen.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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philly78
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Yep. 22 years of this man's life taken away from him. It is truly unbelievable.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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I just find it so irritating that someone with Lyme disease for 22 years can be cured in just nine months, while so many of us only had Lyme disease for a year or two and can't be cured in that time.
It's obvious IV antibiotics work better than orals, hands down I don't care what any LLMD has to say. I'm not trying to put any blame on LLMDs whatsoever, but from my research I've heard of many people sicker/longer with Lyme disease get better IVs than those who aren't bad with orals. The proof is in the pudding! True some still suffer after IVs, but overall IVs are better. Sometimes it's because they aren't put on IVs long enough.
But due to insurance companies not wanting to cover it more than a month if that, we are all left to suffer. I think this is the main reason of all the chaos. The lies from the CDC so insurance companies can benefit. We live in a country where our government is run as a profitable company.
And another thing for those of you that are told by some of the so-called LLMDs that you're gonna have to live with Lyme because orals didn't knock it out, don't listen to them and find a doctor that will give you intravenous antibiotics.
I already had to dismiss 2 so-called LLMDs where I am because they undertreat. I honestly believe that undertreatment is the reason why so many people suffer but I do agree that some treatment is better than no treatment.
Posts: 267 | From MI | Registered: Oct 2011
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glm1111
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He was given IVIG intravenously, not IV abx. My insurance co paid for my IVIG,($5,000 mos) but refused more than 1 mos of IV abx. Mindboggling.
Still, I had IVIG for 2 yrs after my head, chest and pelvis went numb, but it didn't eradicate my Lyme. I was only given the IVIG once a mos, so obviously not enough.
I also managed to get free IV Rocephin for 6 mos, but that didn't touch me either. The only thing that worked for me was antiparasitics.
Wonder how much and how often this man was treated and if he had additional abx tx, which is highly likely?? Wonder if he knows how lucky he is to eradicate the Lyme in 9 mos?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Oh sorry, does it really matter? Point is I see a lot a people with money getting better because they can afford treatments such as intravenous antibiotics and hyperbaric chamber. That's great and all, but it's wrong that people with money are getting better treatment then ones who don't. Just making a point the medical system is unbalanced. Articles are popping up all over about how these expensive treatments are getting people cured, yet the CDC still says long antibiotics don't work. And I know there's a lot of people who get cured and just go on living without saying anything.
And how do you know for a fact that the antiparasitics are the ones the work. There are people on here saying that rife machine cure them. I don't want to offend anyone but for them the say that rife machine cured them from Lyme? Seriously! Could've been just your system recovering from long-term antibiotics, your immune system kicked and you feel a lot better now. No one knows what particular medicine work for them, what's important is they feel better. I do believe you that antiparasitics medication probably did help you, but I guarantee that IVIG intravenously helped you the most. Think of it this way, do you think you'd be better state if you just took antiparasitics and week orals? I highly doubt it.
My mother just had bad bacterial infection in her mouth a few months ago because a cracked tooth. She tried multiple orals didn't work, then got to the point where she had to have intravenous ABX. Cured her problem instantly!
And the reason I think many LLMDs don't hand out IVs is because they're worried about the insurance companies turning them in like Dr. Burrascano said.
[ 06-20-2012, 10:32 PM: Message edited by: Muscle Car55 ]
Posts: 267 | From MI | Registered: Oct 2011
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I'd also like to say that I hold people like this professor and many others in higher up status to sort of a responsibility to speak up and say something. Especially celebrities!!! The truth is we live in a society where people like you and I, our opinion doesn't mean anything. You see how ABC news threw the young girl girl Elaina with the Russian accent into a group of people with psychosomatic problems. Why doesn't ABC news cover this professor rather than the young girl?
When Magic Johnson confessed to having AIDS, just that one person made more of a difference than all the people with AIDS. Think of it this way if Magic Johnson had gotten misdiagnosed for 22 years with Lyme, then he got cured of IVs for nine months I guarantee this would change a lot of things.
It's amazing the bastards at the CDC are still saying that there's no evidence that long-term antibiotics work. It's like a broken record, Dr. Paul Auwaerter said it on the Dr. Phil show. We get more articles like this and people with status coming forward, CDC will not be able to bail out the insurance companies no longer.
Posts: 267 | From MI | Registered: Oct 2011
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glm1111
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Muscle,
I hear you loud and clear. I guess I was making a point about the IVIG vs IV abx. MOST ins companys will NOT pay for long term IV abx as mine (BC/BS) refused to do, but they DID pay for the IVIG as they must have done for the professor. Two different treatments.
When I could no longer afford an LLMD or ins. I had to treat myself.
I agree about the disparity of people with money can and sometimes do get better treatment, but it's usually because they have the money to do so, not because the insurance companys will pay for it...they wont!
When I was trying to get IV Rocephin above 1 mos from my insurance co, I called the State representatives office and spoke with the Govenors top aide.
Bottom line....no dice because the ins co refused to pay, but they did pay for the IVIG instead. Many people are on long term abx without success, and that's why it's not approved. I was on them for 4 yrs and still sick.
Look into treating with antiparasitics, which in combo with abx are much more effective. The LLMDs are just starting to wake up to this.
Look at the Movie Stars who have died from cancer (Farrah Fawcet, Patrick Swazey)who could afford the BEST money had to offer. In the end, I got myself well using some VERY inexpensive protocols.
Was I angry that the misdiagnosis of my illness and the ignorance of the medical community took my lifes savings and 30 yrs of my life...you bet!
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Gael have the utmost respect for you! Great to see you called the State representatives office!!!
I did take antiparasitic herbs, Humaworm and Paraherbs for 2 1/2 months. That was before my ABX because my osteopath thought it was a parasite is causing all my problems. I should go on them again soon because that was five months ago.
As for your statement about movie stars with cancer, I would say you can't really compare cancer and Lyme disease as they are two different diseases. If you want to compare something, compare the celebrities who have Lyme disease to the standard person like you and who have Lyme disease. From my understanding the celebrities who have severe Lyme disease are still alive while standard people like you and I with severe Lyme have died, like what many proclaimed in under our skin. If You can find a celebrity who has died from Lyme I'll be shocked, suicide doesn't count either.
I liked Patrick Swayze, made me really sad when he died. The truth was he had pancreatic cancer. Pancreatic cancer is very hard to cure.
I mean if you think that white-collar workers that make $100k+ a year "sometimes" get better treatment then blue-collar workers that make $30k, I think you're naive. Most people I know don't have health insurance because they can't afford it, I mean right there what does that tell you? You should spend a few days down in Detroit or any other urban city, these people can't afford health care, plain and simple!
Many people tried saying that Magic Johnson got the same treatment as every AIDS patient. But you know what I don't buy it, the guy is still alive while thousands of others have died with AIDS.
I mean think about the people who can't afford to travel out of state to see LLMD. From my understanding some states don't even have them.
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Ann-OH
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Magic Johnson is no hero or role model. He infected hundreds of women.
glm1111
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Muscle, I TRULY get what you're saying first hand. After losing my life savings and being too sick to work as a nurse, I cannot afford to have the doctors of my choice. Most of my friends go to clinics or HMO doctors.
I collect S.S, and am on medicaid and medicare. I "know" without a doubt that the care is different from personal experience. Spend a few days in Detroit?
, I live in the heart of a fairly big city, where I see homeless people everyday...makes me crazy!
Like I said, I lost everything some yrs back and could no longer afford an LLMD. So, I am "one of those people who can't afford an LLMD" even around the corner.
I wasn't comparing cancer with Lyme disease, I was just saying that sometimes even having a ton of money can't save your arse. I really think we are on the same page, just saying it a little different.
BTW, if the ostepathic doc thinks you have parasites, did he give you any meds for them? If not, I would get back on antiparasitics like yesterday and STAY on them, upping the anti when needed.
If you need help with that, let me know. Wishing you healing and wellness from this lousy disease.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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quote:Originally posted by glm1111: Muscle, I TRULY get what you're saying first hand. After losing my life savings and being too sick to work as a nurse, I cannot afford to have the doctors of my choice. Most of my friends go to clinics or HMO doctors.
I collect S.S, and am on medicaid and medicare. I "know" without a doubt that the care is different from personal experience. Spend a few days in Detroit?
, I live in the heart of a fairly big city, where I see homeless people everyday...makes me crazy!
Like I said, I lost everything some yrs back and could no longer afford an LLMD. So, I am "one of those people who can't afford an LLMD" even around the corner.
Got ya, so you know what I'm talking about. I'm sorry to hear about the stuff you've been through and hope you're doing better now.
quote:Originally posted by glm1111: BTW, if the ostepathic doc thinks you have parasites, did he give you any meds for them? If not, I would get back on antiparasitics like yesterday and STAY on them, upping the anti when needed.
He didn't give me any anti-parasitic pharmaceutical meds, just suggested buying humaworm. Honestly the osteopath just didn't know what I had, which is sad to say because he supposed to be a lyme literate doctor In Michigan. And when I think of it, I had a clear case of Lyme with my symptoms: burning in my wrists, head pressure, headaches, food allergies, sciatica, and fatigue. It was I who matched my symptoms from canlyme.com and suggested the Igenex test.
I'll definitely mention antiparasitics to my new LLMD.
Posts: 267 | From MI | Registered: Oct 2011
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quote:Originally posted by Ann-OH: Magic Johnson is no hero or role model. He infected hundreds of women.
Ann - OH
By no means was I suggesting that, if you thought I was implying that. I'm just saying people with high status are the ones who make changes, sorry to say it's just the way progress is made.
Maybe you're just making that statement basically because he's a womanizing douche bag which I understand.
It's interesting you suggested how many women he infected. I just saw a documentary on cable about the guy, they didn't even talk about that. Typical TV censorship! They just talked about how he could of infected his wife and kid, which he's lucky he didn't.
[ 06-21-2012, 03:41 AM: Message edited by: Muscle Car55 ]
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AuntyLynn
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quote:Originally posted by Muscle Car55: .... It's obvious IV antibiotics work better than orals, hands down I don't care what any LLMD has to say. I'm not trying to put any blame on LLMDs whatsoever, but from my research I've heard of many people sicker/longer with Lyme disease get better IVs than those who aren't bad with orals. The proof is in the pudding! True some still suffer after IVs, but overall IVs are better. Sometimes it's because they aren't put on IVs long enough.
But due to insurance companies not wanting to cover it more than a month if that, we are all left to suffer. I think this is the main reason of all the chaos. The lies from the CDC so insurance companies can benefit. ...
And another thing for those of you that are told by some of the so-called LLMDs that you're gonna have to live with Lyme because orals didn't knock it out, don't listen to them and find a doctor that will give you intravenous antibiotics.
"Here, Here" MuscleCar55!!!
I think that a very BIG reason why lots of people linger on and on with Lyme, when they are only given orals - because too many LLMDs are scared sh**less to prescribe IV, as it is an invitation for some insurance company to come after their license!
That's the whole "controversy" in a nutshell!
IDSA "experts" are IN BED with the "status quo" (Blumenthal said that EVERY ONE of the Treatment Recommendation Committee members had SOME sort of "conflict of interrest" issue) and that means that they are likely making MOOLA off the suffering!
In Ray Kehrhahn's case - he's a college professor and an athlete? He could afford Columbia University Medical Center, and 9-1/2 mos. of IV (at $3K per mo.?) if his insurance didn't cover!
Look at the THREE most successful Lyme studies ... Dr. S of California (2011) used IV Ceftraxione to CURE NEURO Lyme in 52 weeks! Dr. F of Columbia U showed that 12 weeks of IV ceftraxione "was NOT enough" to cure Neuro Lyme... and the Embers Monkey Study used 30 days of IV to try to Cure their deliberately infected rhesus macaques ... the most agressive treatment the IDSA recommends! These animals only HAD Lyme for SIX MONTHS to begin with, and 70% of them STILL HAD Bb after 30 days on IV!
YOU HAVE TO KICK THIS SPIROCHETES' ARSE! AS HARD as you CAN ... to get Rid of it!
But the Insurers are DETERMINED to stall the INEVITABLE! That's why it's WAY CHEAPER for them to hire PAID LIARS, like Shapiro and Wormser, to hold back the AVALANCHE of Patients that will eventually know the Truth!
[ 06-24-2012, 10:11 AM: Message edited by: AuntyLynn ]
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kam
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Wondering what the difference is between IV abx and IVIG
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AuntyLynn
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quote:Originally posted by glm1111: He was given IVIG intravenously, not IV abx.
Wonder how much and how often this man was treated and if he had additional abx tx, which is highly likely?? Wonder if he knows how lucky he is to eradicate the Lyme in 9 mos?
Gael
GLM111 -
I do NOT believe that Ray K had IVIG - look at the TEXT of the article... it is definitely contradictory! It says he had "two weeks of antibodies" (which we know is NOT the standard of care when one is first diagnosed with Lyme)... then "nine and a half months of antibodies"
Some folks at Mass Yahoo Lyme Group have letters out to the Editors of this Connecticut paper, asking if the Reporter didn't get his facts straight... or if some typist messed up! Big difference between anti bodies and anti biotics !
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AuntyLynn
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quote:Originally posted by kam: Wondering what the difference is between IV abx and IVIG
posted
I'm sure it was antibiotics, not antibodies... how stupid of them to make that mistake!
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AuntyLynn
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Lymetoo - I was too!
This news arrived today:
The author of this story was contacted.
He confirms that the word "antibodies" was mistakenly printed in lieu of "antibiotics." A correction of the online story is forthcoming.Posts: 1432 | From New Jersey | Registered: Jan 2012
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Marnie
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This story upsets me because it has way too many "holes" i.e., missing information that is critical for us to be aware of.
1. What antibiotics was he on? Which ones...names, please...along with dosages and timing. Every day, every other day, every week? Once a day, twice a day...?
2. If he truly had lyme for 22 years, I suspect he was DEPRESSED because most lyme patients are. Was he also on anti-depressants...which one...how much...how often?
3. If he truly had lyme for 22 years, I would not be surprised if his thyroid was impacted as it often is in lyme. Was he ALSO on thyroid medicine?
4. If he truly had lyme for 22 years, was he borderline late onset diabetic? Several lyme patients develop diabetes. Was he on anti-diabetic meds?
5. If he truly had lyme for 22 years and lyme does look to impact cholesterol levels, was he on statin drugs?
I'm asking this because there IS an interplay between meds.
When he was on IV abx. did he faithfully take probiotics? If not...if his "good guys" were dramatically lowered, this would impact his ability to absorb and make nutrients and he would ultimately lose a significant amount of weight = "burn fat" -> upregulating ketones. One ketone, BHB, can cross the blood brain barrier and enter the cells' citric acid cycle -> More ATP...a very good thing. This could theoretically ramp up the ability of his OWN defense cells.
However, his dramatic weight loss did not happen until July last year at which time he weighed 225 pounds.
I noticed he is now exercising a lot and is a VEGAN...B12, et. al cautions.
I guess we all will have to wait for the book he is writing about his experience to (hopefully) have the questions answered. The book is expected out in 2013.
Was it "just" the 9 1/2 months of IV abx. or was it
a combination of things (meds, diet, supplements) that led to his recovery?
P.S. Keep in mind that generally speaking, more women than men develop "autoimmune". This maybe because we women have to downregulate/alter our immune response so when pregnant, we don't "attack" the fetus.
[ 06-26-2012, 06:32 PM: Message edited by: Marnie ]
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kam
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Thx lynn..not doing well enough to read the link but hope to come back to it
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Marnie.. no way they would report all that information. They'd get it all messed up anyway.
you said,
"P.S. Keep in mind that generally speaking, more women than men develop "autoimmune". This may be because we women have to downregulate/alter our immune response so when pregnant, we don't "attack" the fetus."
Re: autoimmune...That's the most plausible explanation I've ever heard.
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AuntyLynn
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I wrote to the Editor and Author requesting a correction of this copy, as the initial 2 week treatment "with antibodies" simply made no sense.
The author responded and admitted his mistake (notes said antibiotics); but instead of offering a "follow up" article, as I had suggested several ways he should "fill in the blanks" to this story, Mr. Caraggio offered to pass my contact info to Ray Kehrhahn.
So far, I've received nothing.
Please note that Mr. Kehrhahn expects his BOOK about the experience to come to press next year. So I'm guessing he'd rather keep this VALUABLE INFO "close to the cuff" 'til then.
Perhaps if more folks should complain at the "contact us" page, or would write a a "Letter to the Editor" we might get more of a response?
They have already been alerted that the article was circulating in the "Lyme Community" (and it made their "most shared" list), perhaps we could exert some influence, en masse?
[ 06-27-2012, 08:59 PM: Message edited by: AuntyLynn ]
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Was this your letter, Aunty?? It's very good, whoever wrote it.
-
"This article has been corrected. Mr. Kehrhahn received IV ANTIBIOTICS not IVIG antibodies! Unfortunately, due to the outdated treatment protocol that has been set by the Infectious Disease Society of America, (which "standard of care" is enforceable by insurers), many Lyme patients will never receive this highly effective, but expensive, IV antibiotic treatment.
Most "Lyme Literate" doctors are private pay, and since most general practitioners are spoon-fed a load of misinformation about the nature of this spirochete by IDSA "experts," the suffering is exacerbated.
When former AG Richard Blumenthal investigated the IDSA Lyme treatment recommendation committee for potential antitrust issues, he found that every member had some "conflict of interest" against public health.
The Settlement Agreement (which merely required the committee to "revisit" its treatment guidelines) has gained thousands of Lyme victims absolutely nothing.
Many will gain hope by Mr. Kehrhahn's success. But until the "experts" are held accountable for their stubborn denial of the spirochete's antibiotic-resistant nature, the epidemic will continue, personal financial losses will mount, and many more lives will be sacrificed to ignorance.
Thank you for printing this important story."
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AuntyLynn
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UNFORTUNATELY these dolts moved this article AGAIN ...and they re-published the UNCORRECTED STORY!! So now it's in "most read" and "most shared" with the silly "antibodies" claim!
I just wrote them again!
And MARNIE some of the questions I asked them to answer were: "what antibiotic? what dose? and was it pulsed or continuous?" I also wanted to know if he was treated for any co-infections.
Good point about female autoimmune disease BTW. Makes a lot of sense.
[ 06-28-2012, 10:24 AM: Message edited by: AuntyLynn ]
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