We've just taken my son to see an NYU neuro. He wants my son in the hospital for a couple of days on a EEG video monitor.
We've done this twice before with resulting dx of pseudo seizures. This neuro is suggesting corticosteroids to reduce inflammation in brain. My husband is all for this, but I know that it should not be given to Lyme patients, but, of course, right now, I can't find any real scientific info to back up my stand.
Neuro also says that they consult with Dr. H (NY) and have quite a few Lyme patients
Any help with this will be greatly appreciated
Thanks, Karen.
Posted by poppy (Member # 5355) on :
There have been cases where lyme docs OK'd steroids, but not without abx onboard too. What does your lyme doc say?
The point is that steroids depress the immune system which allows infections to have free rein. This is true of all infections, not just lyme.
Posted by Keebler (Member # 12673) on :
Topic: Minor surgery and steriods - complications from steroids that were not supposed to be administered.
posted by desertwind - 19 April, 2013 -
Posted by Keebler (Member # 12673) on :
- Please do not let anyone call any seizure a "pseudo" seizure. And that can mean avoiding the idiot doctors who do not understand all they should. More detail:
[ 04-28-2013, 02:08 PM: Message edited by: Keebler ]
Posted by Dan's Mom (Member # 11347) on :
Yes, I have heard of that as well, but I thought it was only in life-threatening cases. My son is dealing with seizures and anxiety and while the goal is to get ride of the seizures, I don't want to get sicker as a result.
They have agreed to consult with Dr. H. before any treatment. Not all that confident in LLMD, since he gave okay to pneumococcal (sp?) vaccine before starting IVIG and that just made him worse.
Have since found out that he is dealing with various snps in methylation pathways, so he has trouble detoxing.
Common sense says don't give someone with a depressed immune system (low IgA, IgM and IgG subclasses) something to further depress his immune system.
Posted by Keebler (Member # 12673) on :
- Just because the neurologist says they have lyme patients, that does not mean they really do or that they understand all they should or do things as they should.
There have been cases of death from steroids given to patients with lyme. I've seen at least one medical abstract at PubMed. Of course, they do not attribute the death to the steroids - but just to happenstance.
What does your son's LLMD say about this?
There are many OTHER ways to reduce inflamation. IV Magnesium would be far better tolerated, safer and more effective in most cases.
I would connect with a LL ND, too. -
Posted by Dan's Mom (Member # 11347) on :
Keebler, Thanks for the links. Other docs who have seen his seizures, assure me that they are not pseudo.
The dx of pseudo seizures came from Stony Brook Hosp. (notorious Lyme deniers) at the same time that they told me that Dan "absolutely" did not have Lyme Disease after having a CDC positive Western Blot from a spinal tap. So, I take their dx with a grain of salt.
Posted by Keebler (Member # 12673) on :
- If your son has trouble detoxing, likely the Cytochrome P-450 liver detoxification pathway is compromised, too.
Steroids are absolutely containdicated with such patients.
My worst seizures came from prednisone - and I was told they were "pseudo" - they were not. Later 3 different QEEGs - with a Q - proved the seizures and slow brain waves.
Seizures drugs also made it so much worse - but I'm too tired to expain why - other than their toxicity and trying to sedate a brain that really is trying hard to break through with some alertness.
In such a cas with porphryia, though, steroids can make things worse and cause seizures - due to toxic buildup of porphyrins.
Is there a way you can see a LL ND? -
Posted by Keebler (Member # 12673) on :
- When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posted by Dan's Mom (Member # 11347) on :
We have taken him to LL neuros, LLNDs, Functional neuros, and tried all sorts of supplements with varying degrees of success. Bottom line is nothing has stopped the seizures.
Treatment for Lyme, Babesia and Bartonella has slowed them somewhat. However, at this point, treatment has to be very low, and pulsed in order to let his body detox.
We are in the process of doing more gut testing, food allergy testing,genetic testing etc. while awaiting a consult with a nutritionist who is familiar with MTHFR issues. Results of genetic testing (23 and ME) indicate that he has a lot of other issues as well.
The visit to this mainstream neuro was at my husband's insistence. He's convinced that there is a simple answer.
Posted by Keebler (Member # 12673) on :
- Oh, to be clear,
a a EEG video monitor will not be helpful with the kind of seizures from lyme - or from porphyria or from food additives.
If he's to be in hospital, he will be getting food additives, big time - and likely gluten and fake foods, too.
There are other ways. I wish you the best.
QEEG will tell you so much more. But most doctors don't do those and most insurances don't cover them.
Really, though, you may not need any more testing.
Inflammation is the key here and an LL ND can do IV Magnesium, etc. or you can give him magnesium shots (combine with B-12 so they don't sting so badly. Never do mag. alone for shot or IV, it's very painful alone).
Magnesium "oil" for topical use may be easiest but not likely as fast acting as an IV drip. A drip, over 40 minutes is easier on the body than a push (20 minutes). -
[ 04-28-2013, 03:59 PM: Message edited by: Keebler ]
Posted by poppy (Member # 5355) on :
Ah, a simple answer. Don't we all want that? But I haven't found one.
Posted by Keebler (Member # 12673) on :
"Unless one knows what levels their MSH and ACTH are, never give steroids. Someone may be given Cortef, and it may knock out the last anti-inflammatory pathway you have left."
It might be worth it to contact his clinic for data to back it up.
As for me, steroids caused me permanent eye damage and severe gut dysbiosis, so I avoid them (this was before lyme, so I don't even want to imagine what they'd do to me now).
Steroids are basically thrown at people when the docs don't know what else to do.
If the brain-swelling is life-threatening and causing damage, then consider steroids. I hope you can find an alternative though that will treat the root of the problem and not the symptoms.
Could something (in addition or other than lyme) in your environment be cause the seizures?
I have horrible neurological problems when exposed to VOCs and they can cause seizures.
"This involves a brain response in which the person has seizures or seizure-like activity following exposure to chemicals. It has also been demonstrated that individuals who have toxic exposure can have reduced blood supply to the brain."
More info on VOCs
INDOOR AIR QUALITY: Scented Products Emit a Bouquet of VOCs
Keebler, the hospital is allowing me to bring in his food and supplements and to stay with him. I do realize that this is probably an effort in futility, but am trying to keep the peace with my husband.
As I said before, we have been to so many doctors, mainstream and alternative. The good ones tell us that there is something that is being missed and to keep searching, which is what I am doing. Dr. H told us to test him for everything and try everything.
He's had IV Magnesium (can't handle B12 -methylation issues). He's had two QEEGs, both show inflammation. The second one showed improvement after IV drips of PhosCholine, but they are very expensive and have been put on hold until we get all the gut testing, etc. done.
Judie, he has the haplotype for mold and we had our house remediated and then checked for VOCs. PhosCholine drips seemed to really bring up his MSH, VIP, etc. Thank you very much for the link and the suggestion to call the clinic. I will do that.