I have multiple family members with lyme. We are being treated by an LLMD. For us to go see Dr H will cost a small fortune, between his fees and more lab costs. That is not my main issue - I would pay anything to get my family well. But, it is part of my bigger question - since we are all late stage at this point (thank you to all of the regular medical doctors who didn't treat us properly), and there is no "cure" for this - is there anything that Dr H will do that others can't, or does he just try different protocols and hope something works?
None of us are what I would consider "tough" cases - we all function well, have enough energy to live somewhat of a normal life and can deal with the aches/pains.
Posted by JugglingLymez (Member # 34276) on :
My whole family has Lyme and co's and over the past year we all switched over to Dr. H in NY (3 hr drive).
While none of us is well, I would say we have seen improvements in all, after years with other LLMDs.
What I like about Dr. H is how his practice uses both traditional and herbal meds, and how they look at the big picture - testing for everything up front, including using almost every possible Lyme/Co blood test, heavy metals, adrenal function, thryoid function, etc.
Also they use lots of supplements, and have strategies for alleviating herxes, and pain.
Generally they seem to change the antibiotic/herbal protocol every few months, to keep hitting at different angles.
Especially with the supplements, the cost is not insignificant for a whole family.
We see one of the two PAs there - both are highly regarded. We get to see Dr. H occasionally.
Good luck and let me know if I can help with any questions.
Posted by AuntyLynn (Member # 35938) on :
Please see this video from a Lyme Conference that was held at Skidmore College in NY in May 2012. Dr. H addresses the assembly at marker 23:50, but be sure to catch the introduction by his patient Leah, beginning at 20:20. Judge for yourself.
@ 16:23 Introductions, Panel and CV Dr. H, Founder, ILADS @ 20:28 "Leah" Lyme and Babesia patient of Dr. H @ 23:50 Dr. H, has seen 12,000+ Lyme patients in past 25 years - MSIDS "Multi-systemic Infectious Disease Syndrome"
**** edited to remove LLMD's name ****
[ 07-05-2012, 11:40 AM: Message edited by: sixgoofykids ]
Posted by Catgirl (Member # 31149) on :
It's a personal choice. I myself have a wicked case of babs, so for me he's worth it.
Posted by bcb1200 (Member # 25745) on :
I see him and overall am pleased. I have to say that I"m disappointed that Dr. H doesn't seem to be the best listener. The ego is pretty big.
Just need to be aware of that.
Posted by Catgirl (Member # 31149) on :
I guess when you know you're good the head starts swelling (ha ha)!
Posted by tricia386 (Member # 29623) on :
bcb1200 agreed
Posted by lyme in Putnam (Member # 11561) on :
How long is anybody seeing and have results( hopefully good)
Posted by seibertneurolyme (Member # 6416) on :
catgirl,
How long have you been treating babs with this doc? Hubby has tried everything for babs in the docs recent presentation plus more over the last 18 months and is still battling WA-1. Just wondering if the doc has any new meds or herbs available?
Hubby is very reluctant to go to another doc for yet another opinion -- we saw 3 different LLMD's in 2011 plus his current one.
Bea Seibert
Posted by Catgirl (Member # 31149) on :
Almost 4 mos. I'm on malarone and crypto for the babs and Byron White, diflucan and nystatin for everything else. Oh, and a boat load of supplements too.
Something's working. I herx every weekend like clockwork, then every four weeks.
Has your hubby tried the glut pushes yet (help some people)?
Posted by seekhelp (Member # 15067) on :
Bea, I don't think he has any ideas/treatments you have not tried on your husband. I don't think any LLMD does. He's been on more and higher doses than anyone I read about here.
Posted by Catgirl (Member # 31149) on :
Bea, has your hubby been tested for protomyxzoa yet? It may be protecting the babs.
Posted by glm1111 (Member # 16556) on :
Hoops,
I would look into treating for parasites/worms before I would spend any more money. I don't think this doctor goes after these infections which have long been overlooked even by the best LLMDs.
After seeing one of the best LLMDs, and 4 yrs of abx I waa still sick. What turned the corner for me was going after these infections with antiparasitic herbs and salt/c. Thirty days is never enough, you have to treat until symptom free.
Check out the symptom list at Humaworm for parasites, Some people on here are having success with Ivermectin, a broad spectrum antiparasitic.
Gael
Posted by Lymetoo (Member # 743) on :
Moving to Seeking A Doctor
Posted by lymeboy (Member # 24769) on :
I spent a small fortune bouncing from doc to doc before I found one that I liked. The good ones are usually always expensive. Dr. H. is the only doc in the Northeast that is much good, IMO. I travel further for treatment and I am happy, but if his wait list wasn't so long, I'd be with him.
I STRONGLY recommend going with him or someone equally reputable. That money will get thrown away on bad treatment. I am pretty well convinced that there are no good docs left in the Northeast. Just Dr. H.
I have been to a number of docs and they were all pretty bad. Some of them had great reps, published even. But they were crap.
Posted by seibertneurolyme (Member # 6416) on :
catgirl -- Before hubby was diagnosed 11 years ago and for 2 or 3 years after he started treatment I was giving him daily or multiple times weekly IV glutathione. Finally a different doc suggested a different brand of alpha lipoic acid and he doesn't seem to need the IV glutathione any more. Has tried it a couple of times and it did not do much of anything.
He has not been tested for the FL1953 but we do know he has some other unknown blood borne dumb bell shaped parasite seen by Clongen lab 2 times and also by phase contrast microscope.
seek -- Thanks for the comment. I actually think we found a combo that was really working for hubby but it worked too well and the multiple episodes of hemolysis flushed too many unknown things out of hiding.
The current IV meds seem to be resolving the encephalopathy slowly and the headaches, tremors and dystonia are decreasing in frequency and severity.
Hubby so wishes we could turn back the clock a few months to before we tried the med challenge which started up the fevers again. We still really don't know if the fevers are from babs or some other protozoa or from ehrlichia/anaplasma or some other rickettsial disease.
Bea Seibert
Posted by Tammy N. (Member # 26835) on :
I would like to echo what Gael said.... before doing any more traditional treatments, I would strongly recommend aggressively treating parasites. I don't believe Dr. H pays much attention to this, if at all. IMO he misses the boat on other things as well (mold, etc.)
Dr. H himself has said during his talks that 99% of his patients crash once they stop abx. That tells me something is being missed. No about of abx can get rid of parasites.
I'm finally aggressively treating for parasites and cannot believe what is coming out of me every day. It finally makes sense why I have been sick for so long. I think parasites are a primary issue for most of us, if not THE primary issue. Just my opinion.
Good luck to you.
Posted by lyme-o (Member # 35115) on :
My husband sees Dr H. Actually first visit with Dr. H and subsequent visits with the PA. We have been with them for approx 12 weeks. He is finally seeing some improvement. He is on IV Vancomycin among many other drugs and supplements. And if one thing doesn't work, they will keep changing things until something does. We were with Dr. B in Rhinebeck for about 8 mos. Bad news there. I absolutely recommend Dr. H. They spend 1 to 1 1/2 hrs with you. They are accommodating. My husband never tested positive until going to Dr. H. They retested and then 3 weeks later emailed us the Western Blot test which showed the proof we wanted. Positive. Please, if you have any questions, don't hesitate to PM me.
Posted by Catgirl (Member # 31149) on :
Bea, it sounds like your husband has a wicked load of babs. FL1953 symptoms are similar, so maybe he should get tested. That sludge it makes probably protects everything else hiding in it (biofilm).
Have you done a full methyl panel on him yet? From what I hear, it's worth it.
And, I agree with Tammy, IMO, parasites are a huge consideration with lyme and company.
Posted by gingerteacup (Member # 36208) on :
Dr. H does test and treat for parasites. I came up positive and did a pharmaceutical anti-parasite protocol for 11 days. I've been seeing him for 4 mos (he is my 2nd LLMD) and am seeing some improvement. I think a big change came after the parasite treatment, so I agree that is an important aspect to consider. I think Dr. H and his PAs are worth the money, I am getting my life back after years of illness.
Posted by Tammy N. (Member # 26835) on :
Ginger - 11 days is not nearly enough to eradicate parasite infections. From what I understand it takes months, sometimes years. Plus maintenance. (It's similar to how most docs give only 3-4 weeks of abx for Lyme but we know it is not nearly enough). The fact that you had a big improvement says a lot. I would not step away from this path if I were you.
It's great that you were treated. I would continue to do research on your own, when bring it back to Dr. H. Docs can learn just as much from us as we can from them. I think raising the bar on certain aspects of our treatment helps doctors become better doctors.
Dr. K is the first doc in Lyme circles to really stress the importance of treating parasites. It's because if his teachings that other LLMDs are finally starting to treat parasites (and also deal with detox, metals, mold, etc.). I would research what you can on Dr. K and his protocols.
Best to you.
Posted by TF (Member # 14183) on :
This is a quote from Tammy N:
"Dr. H himself has said during his talks that 99% of his patients crash once they stop abx."
This misquote has been around for a while. I remember when the misquote first happened--shortly after Dr. H's speech. Then, finally, it was resolved.
The entire statement by Dr. H was something like if the patient goes from taking antibiotics to stopping them cold, then 99% crash. For that reason, he moves his patients from antibiotics to herbs. Then, eventually, they can stop the herbs and don't crash.
That is my memory of it. You can search the old posts and find where someone who heard the speech and recorded it gave the entire thought. It wasn't intended to stop with the "99% crash" part.
Posted by fflutterby (Member # 28081) on :
I have been seeing Dr. H and he does not leave ANY stone unturned. He tests for everything under the sun and treats it. He is world renowned.
He does treat parasites. According to him Chronic Lyme is really MCIDS - Multiple Chronic Infectious Disease Syndrome. He tests and treats for hormones, metals, adrenal dysfunction, parasites, virus's, emotional traumas and so much more.
Because of him and his attentive PA's I have my life back. I am not symptom free but getting closer and closer each day.
I am making steady improvement. Hoops, my dear friend. He does not just try different protocols and hope something works. He gets to the root causes.
I urge you to read TF's post here. It explains so much.
![[Frown]](frown.gif)
He's been on more and higher doses than anyone I read about here.