Topic: LLMD/MD who dx's and tx's KPU and Pyroluria in NY, NJ, or CT area?
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
{Not sure if this should be in seeking a dr instead).
I have an LLMD, but he doesn't work with KPU, Pyroluria, and methylation pathway glitches---and I know that I have 2 genetic
methylation pathway glitches, and may have more issues. It could be an non-LLMD, but would be much better if it were an LLMD, as that complicates the picture a lot.
I am having lots of problems tolerating various abx and meds, and my LLMD gets exasperated with me and doesn't understand,
which is very frustrating for me, too! I don't chose to have these issues! Thank you.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I think I also have methylation issues (I'm chemical sensitive) and have crashed hard after first abx experience (now housebound/not functioning where i was before). How did you test for your methylation pathway issues?
Posts: 200 | From New England | Registered: Dec 2009
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posted
My LLMD is treating KPU (I just started) but I'm in PA (LLMD is about an hour outside of Philadelphia)
You can PM me if you want more info
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I have a ND (not LLMD) in NJ who treats KPU. PM me if that's of interest.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
I am moving this to seeking doctor. If you are reading this in Medical, there is a link at the upper left hand side of the thread that will take you to the seeking doctor thread so you can post. Thanks!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
An LLMD that I went to almost 3 years ago tested me for methylation issues, but never explained the results or did anything with them (I also didn't continue with him after a few
visits, as he wasn't very responsive to questions, etc.). Then later another LLMD interpreted the test and told me about it, but didn't tell me what to do about it! My current LLMD doesn't know about it, which is frustrating.
I will PM you guys who are seeing someone who is addressing it. There are always so many different issues to address! But this one seems huge, as it interferes with my ability to handle most meds and abx hugely. At least I am assuming that this is what the problem is.
Strangely enough, when I read Dr. K's presentation on KPU last night, I saw that Dr. Hoffer found in the 50's that schizophrenics had a very high percentage of KPU (70-80%, I
think), and my mother was schizophrenic, and had paradoxical reactions to all psychotropic meds. They all had the opposite reaction in her and made her worse. Hmmm. I don't usually
believe in genetic stuff, but some stuff obviously is---or, it could be all from the same darned infections---which I think she had unrecognized!!
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
f13girl,
I don't know the tests that one should have really. Maybe the others can chime in here.
Are you doing detox to take care of both the toxicity of the abx and the die-off of the bacteria?? That is essential in my experience!
ANd the more sensitive we are, the more we need it. There are LOTS of ways of doing this. Talk to your LLMD about it, plus there is lots of info here about it.
Posts: 3771 | From around | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I deal with two kinds of porphyria that had been dx through blood, stool, and urine collections send to Mayo by a liver specialist who was into environmental medicine at our local medical college.
That was about 16 years ago (before I knew I also had several tick infections). My ND sent me to this doctor and he was tops. Too bad he retired. But . . . even he could find no other doctor to take his patients as most in my city don't "believe" in porphyria or understand that it can have a chronic nature as this specialist knew.
Even, then, with all the tests, my GP totally discounted porphyria as contributor to my health challenges (and there was no way he'd consider lyme or even "CFS" - he just wanted to label me crazy and lazy).
Porphyria is taught in medical college - but not to all students - mainly for those becoming liver specialists. Now, there is more known about it but it is still very "controversial" regarding those that are not so acute but still cause chronic problems such as MCS (multiple chemical sensitivity).
So, while it would be fabulous to find a good LLMD who also knew about porphyria matters, you might look for a liver specialist or contact your local MCS support groups - and your local autism support groups.
Perhaps some of your local autistic-minded MDs or NDs can help. And, maybe Dr. Klinghardt's office has a list of others around the country.
I doubt you'll find a direct answer right away but something in these links may lead you to finding a brilliant doctor in this area:
You might also consider finding a good LL ND (naturopathic doctor). Many LL NDs are also ILADS-educated and I would insist that they have that knowledge base. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, Keebler. You are a font of wisdom on so many subjects.
Boy, "crazy and lazy." Whew, these guys should try what we have to deal with on for size! What a lovely strategy---you don't understand something, so you disparage the patient. It never ceases to amaze me.
Posts: 3771 | From around | Registered: Mar 2008
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