My mom is making some calls to some dr's in the states, and someone told her that John Hopkins treats lyme and they are supposed to be excellent. I haven't heard of other's here talk about this... but are they good or bad?
Thanks.
Posted by Keebler (Member # 12673) on :
- No. No. No. No.
They do not believe in lyme.
There is one researcher there who recently had an article that seems promising but, by and large, the attitude of JH is to discount lyme patients.
The IDSA has a strong hold there and, while each doctor may theorically be able to practice on their own, as a whole, JH follows the IDSA misinformation about non-treatment.
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I was going to go there for an ear surgery of a complex nature that would be intracranial. That surgery would have required the use of steroids. As steroids are contraindicated with lyme, I wanted to know JH's stance with lyme and if the JH staff might be lyme literate enough to see me safely through surgery.
I was very disheartened with what I found in a preliminary search. [However, had I had the money for co-pays or the support/helpers to do this, I would have gone in person and further discussed with the attending physicians. I just wanted to find doctors on their staff first who had knowledge. I found none.]
And, that being said, I did hear of one doctor there who does not treat lyme but does seem to a bit more about it than others. But he would not have been able to do anything about directing treatment if a lyme emergency were to arise from the steroids.
Others here may have one or two names for you at JH but, historically, JH has been a killing ground for patients with advanced lyme or other tick-borne infections.
"No help" for lyme is the general rule there.
Too bad, as they are absolutely brilliant and advanced in some other departments. It is the top in the world for the kind of surgery I was considering for my fractured ear canal. Very few elsewhere even know about what they've nearly perfected there in that regard. Very few surgeons of the few who do that surgery elsewhere have the level of skills and success as those in that department.
But the best specialist in one field can be inadequate for a patient who has chronic stealth infections if the doctors are not well-educated in those infections and how they affect the bigger picture.
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While you may be correct in your take on your current doctor (in the UK?) . . . remember that no treatment is a walk in the park. Lyme treatment makes chemotheraphy look like a trip to the ice cream shoppe. (Not at all to discount the pain of that, but patients who have had both lyme and cancer have reported that while cancer treatment had awful spikes, lyme treatment was MUCH worse, overall.)
Not everything is necessarily a herx but treatment can be awful. Sometimes the only way out is through. However, good support supplements and massage, etc. can make the difference in how well it can be tolerated.
In addition to basic liver support, I would also suggest attention to the likelihood of elevated porphyrins making you feel sicker. If you can assess porphyria issues (of which KPU is just one) . . . you may do far better.
[ 12-30-2009, 04:06 PM: Message edited by: Keebler ]
Posted by treepatrol (Member # 4117) on :
NoNoNo on hopkins, mayo clinic
Posted by ping (Member # 6974) on :
Oh Lordy, kareamber... Wait till Tincup finds out, geez.
NO to "Ho Ho Hopkins"!
Please post a thread on this site in Seeking A Doctor instead of letting Mom's fingers do the walking, else you'll likely be jumping from the frying pan into the fire.
Posted by treepatrol (Member # 4117) on :
And to add a personal story, just to hit it all home:
A dear, dear friend of my family was very ill... saw every doctor in his state, and then flew to JH.
Spent 2 mos at JH, was tested for everything under the sun.
Had an entire panel of docs assigned to him - and after a 2 week long conference... they could come up with... nothing.
No reason for his many symptoms, including unrelenting high fevers (104+).
This was just about the time I was being diagnosed with TBDs.
It was clear to my family that the friend had Babs and Lyme.
After one appointment with Dr J (then in NC, now I think in DC)... Bingo.
Friend had clear labwork for Lyme and Babs.
He is fully functional again, and enjoying his life.
So much for the panel of famous docs at JH.
Posted by Keebler (Member # 12673) on :
- There is as doctor in the UK who does the Cpn protocol, very similar to lyme both in disease complexity and treatment.
Many lyme patients have Cpn, too.
If you can find a doctor there in the UK who treats by this protocol, you may well find your ticket to success.
It's the Wheldon-Stratton protocol (or visa-versa). One of the doctors in the name is from Kentucky. The other is from the UK and has had good success treating patients who has been previously dx with "MS" but then found to have Cpn. Many also have lyme with Cpn and the protocol seems to cover many bases - along with individual attention in each case, of course.
BTW, the brilliant doctors working with the Cpn protocol are extremely well versed with matters of porphyria. Attention to that is an integral part of their plan. And that just makes excellent sense.
A Treatment Guide: Lyme and other Chronic Infections
by Dietrich Klinghardt, MD, PhD
October 2009 - 87 pages
================
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too. Be sure to see the REQUIRED supplements. There is good reason for those and they can make a huge difference in how a patient feels during treatment.
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008)
====================
And . . . being on a gluten-free and dairy-free diet seems to be the ticket for many to be able to have whatever treatment they are doing actually work.
Even a tiny amount of gluten in the diet could be causing increased pain and even some very serious neuro issues.
Good luck with your search.
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In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
". . . It is usually pretty hard to confuse Lyme arthritis with osteoarthritis. Generally, Lyme arthritis causes very marked warmth and swelling of a single joint, usually knee or ankle. Rarely it can affect more than one joint. . . . "
[poster's interjection: many false statements in that. Swelling does not always occur, nor warmth. And it can affect ALL the joints in the body, it just rotates frequently !]
. . .
" . . . A blood test for Lyme disease is most helpful is well. IF in doubt, see a rheumatologist to get the diagnosis straightened out." end quote.
[interjection: uh, Rheumatolgogists know nothing about lyme. They will usually declare it to be fibromyalgia. Most often, the wrong test is done and tests most often are not definitive. Coinfections need to be considered, too. Beyond the joint issue, this doctor should have mentioned all the other destruction that lyme can cause to all body systems and organs.]
-
Posted by xoxoxox (Member # 18778) on :
OK, I just have to put my two cents in on this one.
First, I am so sorry that this is something you have to deal with from so far away.
A year ago, our Health Care Advocate recommended I go to Dr. A at JH. They are the top hospital in the country and he was supposed to be their top Lyme specialist. There was a 3-month waiting list to see him and I was in so much pain I ended up making an appt. with another doctor in the same group. I figured it had to be close to seeing Dr. A.
The doctor was very thorough - carefully reviewing my history, doing physical tests and asking tons of questions. I was sure he was going to figure it out...until he threw in the random question. One second he's asking me when my pain began and without batting an eye asks, "Do you ever experience guilt?". "Of course I do," I tell him. "I'm Catholic. Who doesn't?" It caught me so off guard.
At the end of it all, he told me that my problem was Depression because: 1) I've stopped doing the things I like to do (ignoring the fact these were physical activities and it's too painful to do them) 2) I experience guilt. 3) I was emotional. 4) My Quest Lyme test was negative. 5) And because Lyme is hard to get and easy to treat.
When I asked how Depression explains all of the symptoms, he said that it can manifest itself in all kinds of ways and often as pain. His recommendation was to take anti-depressants and go talk to somebody.
It was devastating. That's when I finally understood my symptoms would never get resolved until I took control and went and got an IGenex test. It was positive. I wanted to throw it in his face but I'm sure he would just say IGenex is unreliable.
kareamber, do not waste your time or money.
Posted by LymeNetPerson (Member # 23588) on :
Today when I was researching Lyme and made some calls, I did not hear good things on John Hopkins and Lyme.
Posted by Lymetoo (Member # 743) on :
She's gotta be kidding.
Posted by Keebler (Member # 12673) on :
- Danni,
It was truly a trick question. Either way, it's a trap.
Had you answered, "No, by golly, I don't experience guilt" you would have been labeled a narcissist or sociopath and also told to "talk to someone" and take some psychoactive pills for the rest of your life. -
Posted by gwb (Member # 7273) on :
kareamber, you've been given good advice by people who know what they're talking about. Personally, I would not chose to go to JH for lyme treatment.
It's your choice to make. I pray you will make the decision that you believe is right for you.
Gary
Posted by xoxoxox (Member # 18778) on :
You are so right, Keebler!
D@mned if you do & d@mned if you don't!
Posted by Cold Feet (Member # 9882) on :
Wow, tough love in this topic. Keebler, really well said; very pithy and wise indeed.
Posted by seekhelp (Member # 15067) on :
Xoxoxox, I don't know what I would've said to that Hopkins doc, but it wouldn't have been PG13 rated. What a sorry excuse for a doctor.
Posted by Tincup (Member # 5829) on :
Ho Ho Hopkins? OH NO!!!!!
Run, don't walk to your nearest exit!
Ahhhhhhhhh!!!!!!
Rather than go to Ho Ho Hopkins for Lyme.. I'd rather...
Jump into the water off an iceberg near the north pole and live as one with the seals ...
OR... Hang upside down from the top of the Umpire State Building in NYC using one strand of knitting yarn tied onto my ankles to hold me up ... on a windy day...
OR... Go in an underground pit full of poisonous snakes of all kinds and sizes and spend a week there dancing around barefoot ... while covered in snake scented love potions ...
OR... Crawl across Texas after all the sand burrs in the world were placed in my path...
OR... Kiss Wormser and the rest of the IDSA ducks!
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