posted
I am fairly sure I have hypophysitis due to infection. It has inflamed my pituitary which is no longer working. My endocrinologists keep telling me they have nothing to do with infections, they just treat the pituitary.
I have tried to involve my infectious disease doc, and people please do not get into discussions about IDSA, I KNOW the limitations, but I want them to do more testing, but are not answering my messages.
I know lyme and anaplasmosis can cause an increase in monocytes.
What to do about doctors who are negligent in treatment?
I would love a chat with our dear friend Bea. If I had been treated appropriately when my pituitary failed, I wouldn't be in this boat.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- [As a point of reference for other readers: Hypophysitis refers to an inflammation of the pituitary gland (Wiki).]
You've mentioned this issue many times so it seems they are not budging.
If you are working with OHSU (which I think you are), it's just not gonna happen (more testing or understanding of the possible stealth infection connection - or how to comprise any therapy for you in light of the complexities of your situation).
As you know this state is highly controlled by the IDSA, there is not one ID doctor who will address lyme - or ANY TBD. Period. Your repeat pleas to them will not change that. I know. I've been there, done that. Not gonna happen in Oregon.
There is no magic code, no perfect phrase.
Sounds like you want them to treat the TBD. Not gonna happen. It's just not. Not in Oregon. Not at OHSU or any university medical / clinic in this state. It's not going to happen.
You say "they just treat the pituitary" -
but how are they doing that (or propose to do so)? Is it helping (or likely to do so?).
Has your LL ND given the green light for what they suggest as treatment? Hormone treatments can be contraindicated if TBD still a major player. But what they offer might be of help so do run it past your LL ND in advance for her thoughts on that.
I'm sure you know steroids are a huge "no-no" for lyme / TBD but other readers many not yet know that. It would be interesting to know what treatment they have suggested. It may not be steroids but they can fly under many names, so be certain they are not.
And, if TBD is still a major player, by working with that, consistently, the HPA-axis can get better with the infections are better. Stick with your LL ND or move to one of the other ones around. Or hop state lines and get to a LLMD.
Again, there is no MD in this state who is going to treat any chronic tick-borne infection.
Your energy can be all worn out trying.
IMO, if the pituitary treatment they have offered you is not working . . . the best thing is to figure out the best support for HPA-axis and work on that with your LL ND. Herbal, nutritional support and certain life style practices such as Qi Gong (which can really help the HPA-axis) are your best shots, IMO.
Working on reducing that inflammation will help, too. Many ways NDs have to address that.
When the MDs we wish knew more don't and refuse to learn, there is still a lot we can do for ourselves. Always other ways to approach it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some excellent detail here about how we can support HPA-axis. The Cortef links may be of help, too:
posted
"I'm sure you know steroids are a huge "no-no" for lyme / TBD but other readers many not yet know that. It would be interesting to know what treatment they have suggested. It may not be steroids but they can fly under many names, so be certain they are not."
Keebler, you must be very careful about how you approach this topic. If hypopituitary function is causing a drop in cortisol due to low ACTH,
then there is really no magic workaround as one *must* find a way to raise the cortisol and the most bio-identical form of this hormone is hydrocortisone.
Failing to replace low cortisol *can result in death* in fact over 50% of the cases of adrenal insufficiency are diagnosed *upon autopsy*.
When you are replacing your supply of cortisol with normal, physiological amounts it is *not* immunosuppressive. Immunosupression comes from taking supra-physiological doses, usually 3 to 10 times the normal amount.
Treatment with high-dose steroids is a matter altogether different than replacement of a deficiency, and the two should not be lumped together or confused because such a mistake can result in death.
People with little to no cortisol can die in a matter of hours. Never, ever forget that.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- vv,
Good points. There is nothing careless about any of the suggestions I made above.
To be sure, the "careful considerations" are also all there, right in the "adrenal" thread which was posted for reading. And in Wilson's book, which is repeated stated as "required" reading.
Otter,
And that is why the "adrenal" thread is so very important, especially in the discussion about safety regarding the physiological replacement with Cortef.
Be sure to look through that whole thread - get Wilson' book -- but also run any suggestions that MDs suggest past your LL ND first.
I know you've said she is not an expert in the endocrine system. Still, she is very intelligent, and attends all ILADS conferences, etc. She will at least be able to determine if whatever treatment suggested elsewhere for you will be safe considering TBD.
And she is fully aware of all kinds of endocrine supports & the physiological replacement "rules" but also how to reduce inflammation while TBD are being addressed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also be sure to stay connected to all area lyme support groups. There may be others with similar issues who can offer suggestions for how they've navigated these waters.
Pulling this out of the adrenal links set for you:
"I'm sure you know steroids are a huge "no-no" for lyme / TBD but other readers many not yet know that. It would be interesting to know what treatment they have suggested. It may not be steroids but they can fly under many names, so be certain they are not."
Cortef is a steroid, which some patients must take to live. This makes your surface information misleading and confusing and could lead to some patients refusing to take something that could save their life.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The Cortef thread explains all that. It could not be more clearly stately in that links set posted. Specific detail regarding the difference between dangerous doses and safe for lyme patients physiological replacement doses - it's very clear, all right there.
Advice to consult the LL ND was also repeated many times. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Follow up statements explain that the LL ND would know all about that. Geez. Every sentence can't contain all facts. Follow up statements (and links) follow for a reason, to clarify. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Sorry, but telling a hypopit patient that steroids are a "no-no" is dangerous, and as you know those with Lyme do not have a very deep reading capacity all the time. Hypopit usually means low adrenal output.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "Deep reading capacity" or not, anyone who takes any suggestion based on just one sentence (and not reading the followup stimulations of that) on any web discussion site would be foolish. Most here are not that. If anything, most here know that many steps are required before settling on any action or inaction.
Homework is always required - &/ or seeking advice from their LL doctor first, as repeatedly suggested.
Apparently, you did not see this stipulation to the steroid matter:
Pulling this out of the adrenal links set for you:
Cortef ? Physiological replacement dose range is discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I have noticed that many, many times on this board there have been "warnings" regarding steroid use and Lyme Disease and that steroids should be avoided at all costs.
I personally think that this type of advice dispensed by non-medical persons should carry a heavy-duty disclaimer, as in "my personal opinion as a non-medical professional is..."
In addition to those with adrenal dysfunction who must depend on cortef and the like, there are also people with severe asthma who NEED steroid inhalers and perhaps oral steroids to BREATHE and survive. And there are organ transplant recipients whose very LIVES depend on steroid usage.
So please stop the "all or nothing" approach and the lecturing regarding steroids.
For some, it boils down to steroids being a necessary evil and taking them is a matter of survival.
Posts: 1885 | From here | Registered: Jul 2012
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posted
OtterJ, what do you mean specifically about your pituitary no longer working? What bloodtest markers do you have that show that?
I have a pituitary story for you that might cheer you up some.
My prolactin hormone went sky-high 4 years into my having this infection, although I didn't know I had any infection at the time.
I had brain surgery for a supposed tumor, and there wasn't any. The surgeon told my family: good news, I didn't find it. Bad news: I don't understand what's going on.
I wasn't able to tolerate bromocriptine med to try to bring down the count, so I just resigned myself to being a medical mystery.
So, when I found out I had Lyme, like 20 years after that, I started treating with clindamycin oral antibiotics, 150mg, a couple times a day.
A couple years into treatment, out of curiosity, I said to my PC, let's test for the prolactin count.
The doctor then informed me I had a very high count! I asked what it was. It was 1/3 lower than the original count! I think she was shocked at my joy! From 220 down to 150. It's supposed to be at 20!
To be fair, I was also drinking mangosteen juice, an anti-inflammatory juice.
Since then, the count has continued to drop. I think it's lower than 100 now.
So, may I say something - in this case, I don't think you need the doctors.
What you need is, first, a baseline count of all your pituitary hormones. A regular PC or endocrinologist can do that.
Then you need anti-inflammatory treatment of your choice - antibiotics, anti-inflam juices like mangosteen or noni juice, maybe grapeseed extract capsules, herbs, whatever works for you. I'm currently treating with turmeric powder, a pretty good anti-inflam supplement.
Give it a good 6 months to a year, and then retest. Continue to retest about once a year, to see changes.
That's my opinion - we have this infection, it's inflaming our brain, so we need to treat in order to see productive brain change.
Feel free to pm me if you want to.
Posts: 13116 | From San Francisco | Registered: May 2006
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
And Otter BTW, I am sorry your original post got off-topic rather quickly.
I don't know much about the pituitary gland. Has the endo dx'ed you with hypositis( sp?)? How exactly is your endo going to treat you? How did they determine that your pituitary gland is no longer working?
Posts: 1885 | From here | Registered: Jul 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Robin123 we apparently were posting at the same time!
Posts: 1885 | From here | Registered: Jul 2012
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posted
Sorry for not responding sooner, I had problems getting to the site. I was diagnosed with pit. problems by bloodwork of all hormones. Prolactin has been mildly elevated, but not so that it would could problems-- if you consider a bra sixe of 38H NOT a problem. Although my MRI's have been clear, I have had problems with monocytes. Recently, I had a bladder infection, e coli, and my usual thirst and peeing problem went balistic. I've had to pee in stalls at stores I wouldn't let my dog pee in. My vasopressin hormone also known as anti-diurectic hormone level was even less than ever. I freaked. I was dismissed from pituitary care by my pituitary doc, which left me without access to a doc to prescribe Cortisol. I ended up in the ER of OHSU. I called patient advocacy and their response was to put me in clinic with Internal Med residents. I was informed at that time that my pituitary was stable but non functional. I still supposedly had growth hormone. I am questioning that. My recent worsening in the pituitary department sent me back to endocrinology;however, I ended up in another residents clinic in the diabetes division. A diabetes endocrinologist is NOT a pituitary endocrinologist. While in the endo residents clinic, my former pit. endo was there supervising and she let it slip that they had thought I had some kind of histiocytosis. Although my pituitary on the last 4 MRI;s is not showing any issues, my body is. Hemaphocytic hystiocytosis due to infection can affect your pituitary. It may or may not have a genetic component. Many diseases like Epstein-Barr, Parvovirus, Anaplasmosis can cause this, but it is considered rare. For people who have this disease one factor is problems with Natural Killer Cells. All of this could be ruled out by lab testing. One needn't mention the "L" word, but they are taking a wait and see. The problem is that this disease can progress. The treatment is dexamethesone and other suppressive drugs. Sorry, Keebler. If this is attacking my lungs, causing fibrosis, this is a necessary evil. I did do high dose steroids with my Bells Palsy while on Minocyline: I lived and my lyme didn't go wild. I have gone beyond trying to get these a-holes at OHSU to treat chronic lyme. What I find unacceptable is the negligence when it comes to lack of treatment for the other pathologies that lyme causes. This is my issue. I guess it will take case law and jury awards to put a dent into the hold the infectious disease society has on compassionate and logical care.
Posts: 482 | From Oregon | Registered: Feb 2011
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