lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Rifampin for 5 days a few weeks ago. Stopped I was so bad. Depersonaliztion so severe, and then hospital for low salt. salt ok now, depersoanalization still really really bad, worse than its ever been. could that do permanent damage? can't detox much, with salt, fluid restriction. Thanks.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Rianna
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posted
I asked my LLMD that question last week and he said a Herx can not last, you have to detox well I find a large dose of Activated Charcoal helps
Wish you better soon
Posts: 1172 | From UK | Registered: Jan 2007
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randibear
Honored Contributor (10K+ posts)
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posted
i have heard of herxes causing other problems which did last for some time. but permanent, i don't know.
i'd take lots of epsom salts baths and drink lots of water.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Try the charcoal! Take it at least 2 hours away from other meds.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
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posted
Theoretically yes if you are a certain genetic type and you don't take the specific binders needed and deal with other issues of biotoxic illness.
According to the theory, those who are susceptible will remain ill without a specific type of binder and doing other things to get hormones back in range. Borrelia toxins (and for some mold and other types of toxins) will stay in the body and cause inflammation, increased cytokines and disrupt hormones such as VEGF, MMP-9, Leptin, MSH etc...
Here is an article in the pulication "Public Health Alert" that you may find helpful. Biotoxin Pathway Holds Key Pieces of Puzzle in Solving Chronic Illness http://tinyurl.com/m5qdqv
Epsom salt baths would not help in this case and charcoal although helpful is supposedly not very effective for this specific problem.
I've read that cholestepure is effective. I use Actos (downregulates some hormones, a gene therapy of sorts) and cholestyramine but they are both prescription. Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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randibear
Honored Contributor (10K+ posts)
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posted
yeah i had a real problem trying to get cholestyramine from a doc.
never did get it...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TerryK
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posted
Even your LLMD won't give it to you? That was the first thing my LLMD put me on, even before abx.
There are M.D.'s who treat biotoxic illness. Would be worth pursuing if you think biotoxins are a problem for you.
You could give cholestepure a try.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sutherngrl
Frequent Contributor (1K+ posts)
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posted
I think depersonalization is a mental disorder, not a herxheimer issue. (We have talked about this before). Lyme can trigger all kinds of mental issues that have to be treated separately from LD.
For me lyme triggered a mood disorder. My doc says that if you treat the mental disorder for a year that 80% of people's brains will reset. 20% will need medication ongoing.
The question is how long have you treated the depersonalization? Didn't it start well before the so called herxheimer? I ask because I see this as a completely separate issue for you.
Also of great importance is finding the right pysch med for you. Obviously you have not found the right med yet. If one med doesn't work it is time to move on to the next one.
You shouldn't have to suffer constantly with depersonalization when there are plenty of psych meds out there to try.
What works for me is risperdal and xanax. Within 3 weeks, risperdal has made a dramatic improvement in my mood issues, obsessive thoughts and anxiety.
Many psych meds......other than antidepressants which pretty much suck for most lymies, work pretty fast if they are going to work. Mood stabilizers, and antipsychotics work rather quickly.
I think if you can find the right psych med, that you would feel like a new person. Psych issues can also contribute to symptoms that resemble LD, like fatigue and pain. Thus if you suffer greatly from mental issues, it can sometimes become hard to distinquish what is mental and what is physical.
Since I started treated the mental issues, I have become much more able to determine the mental from the physical. And I now see that some of my fatigue issues were magnified because of the lack of treatment for the psych stuff.
It really helps to treat the psych stuff with the correct medication. I think you need to talk to your doctor about trying something new for the depersonalization.
Good luck! I hope you can feel better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: could you not recover from a herx?
Technically, yes - if the liver &.or kidneys are too damaged. Protect your liver & kidneys. Love your liver & kidneys. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
if you dont recover from a "herx", then its no herx.
thats what unfortunately happened to me with tinidazol.
its 5 weeks now since i took it the last time but my neurosymptoms that started on it still havent gone: problems with moving arms and legs, brainfog, weakness due to glucose, insomnia.
Posts: 226 | From earth | Registered: Sep 2007
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TerryK
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posted
suthern wrote: I think depersonalization is a mental disorder, not a herxheimer issue.
I don't think that can be said with any certainty.
Depersonalization is listed as a symptoms of some antibiotics. Who is to say it is not cauased by die off from the killing effect of the abx?
posted
I know that depersonalization is part of herxing/flaring. For me it is not a separate mental disorder. I ebbs and flows just like pain, fatigue, etc. It is the lyme/bart/babs, whatever.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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TerryK
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posted
steven wrote: if you dont recover from a "herx", then its no herx.
What is your reasoning? The cause of a herx is from increased cytokines, hormones, inflammatin etc. which are caused by the toxins created by die-off. If one cannot get rid of the toxins, then they continue to create the same things that caused the herxheimer in the first place.
What would you call it? I think some call it biotoxin mediated illness.
It's always possible that specific symptoms are caused by something else but a long list of symptoms that are herx type symptoms could easily be caused by a toxic condition in my non-professional opinion. They could also be caused by increasing levels of infection and probably other things as well.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
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posted
- (If I may . . . ) Perhaps what steven is speaking to is that not all Rx side-effects are a herx reaction. Some drugs do damage nerves and some body organs/tissue.
It's not always easy to distinguish between a herx and a side-effect or toxic reaction. Not everything is lyme-herx related.
However, the very best liver and kidney support can help to reduce side-effects, sometimes, and if we are lucky. Knowing what to look for helps, too, so that we may stop something if it is not working right for us.
We also need to take into account total body toxin load. Sometimes, it's not one thing but the last straw. Whether from a herx, or not, to limit "total toxin load" requires constant vigilance.
PORPHYRIA is also a very real consideration for toxic damage from certain medicines. Excess porphyrins can kill cells throughout the body. Excess porphyrins can also lead to death, in some circumstances. It's important for everyone to have at least a passing knowledge of this subject.
I think many of the (195,000) surprise hospital deaths each year are linked to unrecognized porphyria of one kind or another.
An average of 195,000 people in the USA died due to potentially preventable, in- hospital medical errors in each of the years 2000, 2001 and 2002, ... -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
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posted
TerryK, I stand corrected. I did look it up and you are right. Depersonalization can be caused by minocycline...... and also from withdrawal from psych meds.
LymeInPutnam, haven't you been cutting back your psych meds? If so that might be making your depersonalization worse. Are you taking mino?
I still believe that the majority of depersonalization is caused by psych disorders such as anxiety, mood disorders, etc.
You have to keep in mind that LD reeks havoc on the brain and that it is very common to develop pysch issues trigger by LD. And in that case it needs to be treated. Left untreated is like playing with fire; and the mental disorder can become permanent or even worsen.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TerryK
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posted
Of course I agree that not everything is herx related and that not all Rx side-effects are a herx reaction. I didn't mean to imply that they were.
Those of us who do not make enough antibodies to effeciently get rid of certain toxins can end up with severe and long lasting herx reactions which include psych symptoms. These symptoms can be helped a great deal with the right treatments. I base that on my research and my own experience.
Of course there can be other causes as I've already said. Lyme and some of the co-infections are known to cause psych symptoms. No matter what the cause, sometimes meds are needed to help us get through the treatment so I wouldn't hesitate to get meds when needed.
Personally, I would hit the symptoms with both psych meds and detox to see if that helps. Binders do not disturb sodium levels to my knowledge.
I hope that clears up what I was trying to say.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
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posted
- Too often, doctors are too quick to slap on psychological diagnoses and leave it at that.
Often "psych disorders such as anxiety, mood disorders, etc." are the result of infections, &/or of liver and kidney overload.
As TerryK mentions, problems with processing chemicals has much to do with all kinds of mood and brain disorders, too.
Anxiety and mood disorders can also be from magnesium deficiency.
Too often, the dx of anxiety or mood disorder is just left at that when, so often, there are some very real reasons that cause such and some very real things we can do to help relieve the extent of the reactions.
Depersonalization is a symptom that can have many causes and many reasons for sudden shifts. It should never be the end diagnosis as it's a symptom of something much more complex - but often something that has answers to relieve the pain and confusion.
Even some cases of schizophrenia have been linked to various infections, and relieved by antibiotic treatment. There is record of stunning success in a few cases.
There are many great examples of psychiatric diagnoses melting away with orthomolecular medicine (vitamin / mineral IV treatments). See Alan Gaby's work in this field regarding nutritional deficiencies and the brain.
In addition to infection and liver/kidney stress, inner ear dysfunction (which, itself, is often a result of infection) can result in misdiagnosed depersonalization, anxiety, etc:
The Importance of Magnesium to Human Nutrition -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
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I was not implying that you ignore the infection and just treat the psych symptoms. I believe you have to treat both at the same time.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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randibear
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posted
didn't somebody on here say that you could die from a herx or something??
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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Member # 12673
posted
- Yes, it is possible to die from a herx. Especially if porphyria is involved.
However, that is why there is so much emphasis on self-care and adherence to the advice of a seasoned ILADS-educated LLMD or LL ND. Pushing too fast, doing too much, not taking care of oneself and ignoring the health of kidneys and liver can get one into a lot of danger.
With good care, it is unlikely for a herx to be fatal. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
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posted
I was cutting back on the lamictal, but spoke to my psych and going back up. They were worried it was making my salt go down. I'm back on 75 lamictal, going to 100 making my soul cry when it has to, but then talking like a usual conversation. I just stopped mino monday, have to see my llmd on Friday. Xanax getting me through till then. With the ocd and depersonalization convinced I am not who I am....its sick, but I still have to function like the rest of us that are trying. Have a dad that needs to be taken care of, a 15 year old trying to understand this whole thing, but knows what lyme can do, he had it for 3 years, thank God not neuro and my husband who had it for a few weeks and is symptom free, thank God is helping with what he can. I know I was worse with the rifampin, will not take it again and swear it lowered the salt, I went awol after the rifampin episode. Thanks for the advice and as always, better health and God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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seekhelp
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posted
Ahh the endless circular logic of is it infection or is it mood disorder? Who knows. It's whatever your doc/LLMD wants to 'guess' right? I really do believe way too many here think everything is TBIs. It just can't be.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
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posted
seek wrote: It's whatever your doc/LLMD wants to 'guess' right?
At least it's an educated guess that includes the reality of TBI's and knowledge of the damage they can do.
Seek wrote: I really do believe way too many here think everything is TBIs. It just can't be.
The fact is, TBI's can affect any part of the body/mind. There are pages of symptoms that can be caused by TBI's.
Not everything is TBI related of course but if a symptom is a common symptom of TBI's and no other cause can be found, then it probably is related.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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