Oh my. Some of you may have read my other post about my son. Up until now, migraines were the only symptom involving his head...
I took him to a Naturopath yesterday. He believes my son has chronic Lyme and put him on several different herbal supplements, as well as prayed over him before we left.
On the way home (my son had NOT taken anything yet!), he said his neck was VERY stiff and he couldn't turn his head. His shoulder hurt also. As we were driving, he looked strange and pushed his head up and way back against the headrest. I asked what was wrong, and he said that the road looked like it was still moving even though we were stopped. He said he knew it wasn't real though, because the road looked like it was being stretched and twisted/disconfigured before his eyes.
When we got home he took the herbal supplements with dinner. Four hours later, he called me at work to say that he felt very strange, he couldn't bend over because his stomach wouldn't let him, and his entire body felt like it was on fire, but he had no temperature and no visible redness. I told him to drink some water and go to bed.
He came in this morning to say that he was completely exhausted and couldn't see straight because he was up all night hallucinating!
Help!?!
Posted by Summer3 (Member # 35286) on :
I was having some similar things. Feeling hot water as cold, things looking different colors, etc. My ND started asking me questions and I could tell he thinks they are some kind of seizure so I looked it up.
Is it possible he could be having a simple partial seizure? Some types alter your senses. I also get really exhausted after and one of the warning signs that some people get is a strange feeling in their stomach. It might be something to look into. I don't have any solutions for it yet though until I see my LLMD soon.
Posted by salibrky (Member # 37646) on :
summer3, if it were a seizure, would/could it have lasted for hours though?
Posted by Summer3 (Member # 35286) on :
I don't know if they usually last for hours without a break in between. I get them on and off for hours sometimes.
For me they seem to transition. For a few minutes I'll have a temperature issue, then I'll be in a trance from a light, later I'll be hearing or seeing things differently.
Last night I felt like I was falling and had an extreme full body twitching (just one time like a jump) with a racing heart. I'm not even positive mine are seizures, but I have had fully unconscious seizures (from Lyme) in the past while in a doctor's office and these feel similar in some ways.
Was he taking any medications at the time? Hallucinations are more common with some of them. I think biaxin is known to cause that problem sometimes.
Posted by Keebler (Member # 12673) on :
- While hallucinations can happen with lyme due to toxicity, inflammation and infection in the brain (do call the doctor to be sure) . . .
. . . what seems like hallucinations may not be that but the way lyme can clobber the entire inner and middle ear area, the vestibular system.
NYSTAGMUS (twitching of the eyes can make things appear to twist, bend, move, even flip upside down).
This article not only helps in diagnosis of lyme but also help someone with lyme to better understand the range of symptoms and patterns (or lack of patterns) and how it can all shift and change around, even from day to day.
While this can be a daunting article (and very hard to read, so copy, paste, change spacing and font, and print) . . . it's very important to know all this:
When to Suspect Lyme � by John D. Bleiweiss, M.D. -
Posted by Keebler (Member # 12673) on :
- Call the doctor and let them know.
I would also question the possibility of Lyme Encephalitis and whether he may need IV antibiotics NOW.
Hopefully, the naturopathic doctor is lyme literate and member of ILADS. He may also need a LLMD,along with the LL ND. Many LL NDs also incorporate antibiotics.
IF his ND does not consider antibiotics, he may need a LLMD or LL ND who will, along with supportive herbs.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posted by Keebler (Member # 12673) on :
- Halllucinations are possible if porphyrins are elevated.
Severe stomach cramps are also a clue.
One of the primarly liver detox pathways, Cytochrome P-450, can be just overwhelmed from lyme toxins -- and from treatment.
If that creates a "Secondary Porphyria" or brings out a genetic porphryia, that high level of porphyrins can cause all kinds of hallucinations.
Many good links here -
Posted by Keebler (Member # 12673) on :
- From a previous post of yours, I see your son has seen a pediatrician in the past couple years, so it helps to know that he is a child - when forming a reply.
I see, too, that inner ear trouble has bothered him for years now, so what he saw coming home is likely vestibular & combined brain effects of lyme to the perceptive regions.
The US weather map showed a blistering day in your area the past two days. Being so hot, so soon, his body may have been shocked from heat and petro chemicals from:
the fumes from the road, others' vehicle exhaust, the off-gassing of plastics in the car -- all that can trigger porphyria.
As for porphyria, I see that Carol suggested that in thread below. You said he's not low in iron. That does not matter.
Do not let that one thing turn you away from this very strong possibility. There are over 11 kinds of porphyria and, quite frankly, IMO, lyme could write a new book on this subject, so to speak.
Gael suggests parasites. Very likely, indeed, as many with lyme also suffer parasites. Those tests done will NOT be enough. Most tests are not.
A good LL doctor should know more and most also treat parasites, heavy metals, etc. as it's all part of lyme.
For others who may need more specific detail before replying, this link has extensive detail and history:
Seeking a diagnosis for my son - posted 23 May, 2012
DETAILED HISTORY & SYMPTOMS -
[ 05-30-2012, 01:47 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- stomach cramps - GLUTEN? Is he gluten-free? If not, that will likely help very much. -
Posted by Carol in PA (Member # 5338) on :
Stiff neck = muscles in spasm = low magnesium.
How much magnesium is he taking? Which form?
Eat foods high in magnesium. Almonds, almond butter Dark chocolate Beans, kidney beans, baked beans, bean soup, bean burritoes.
Also, pharmaceutical quality fish oil improves the integrity of cell membranes, so that nerve cells in the brain will function better. It's good for liver support, as it helps to provide what the liver needs to make glutathione.
The liver uses glutathione to detoxify poisons. There are so many facets to this disease.
Posted by Keebler (Member # 12673) on :
- Ditto to Carol's call for MAGNESIUM & FISH OIL
I had mentioned magnesium to help calm likely nystagmus and vision problems but she goes into more detail.
Along Carol's ending note about glutathione, be sure to avoid acetaminophen as, even in a tiny dose, can block the liver's ability to make and manage glutathione. All kinds of trouble can happen from there. -
Posted by LymeCFIDSMCS (Member # 13573) on :
Neck stiffness can be meningitis. No offense, but this really seems over your naturopath's head if s/he thinks herbs plus prayer is going to fix it.
I think both bartonella and Lyme can cause menningitis, and probably babesia as well. Hallucinations are serious and could be a sign of a brain infection, as could seizures (if seizures are causing the hallucinations, which seems very possible). Also the visual changes your son had could be a sign of Lyme or bartonella in the optic nerve.
Posted by AuntyLynn (Member # 35938) on :
LymeCFIDSMCS said:
"No offense, but this really seems over your naturopath's head if s/he thinks herbs plus prayer is going to fix it."
Sorry, but I have to agree with this.
All the literature I have seen, points to neurological Lyme being a form of meningitis.
Posted by salibrky (Member # 37646) on :
Thank you so much for all of your help and suggestions. I truly appreciate you all sharing your knowledge and thoughts!
Posted by TF (Member # 14183) on :
Quote "His symptoms were joint pain/swelling, tingling in face, vomiting daily and visual issues. Hallucinations that turned into complete periods of vision loss when he was age 6. That is when we sought out Dr. J."
I hope you have been able to consult an ILADS-educated LL doctor by now as others have mentioned the neck stiffness can indicate meningitis.
My thoughts had gone to the term Encephalitis (swelling of the brain) so glad others got specific the meningitis (swelling of the spinal cord tissue at the neck, into the brain), too.
Encephalitis often goes hand-in-hand with meningitis, especially with lyme.
Either can be fatal with lyme.
All the other things mentioned above by myself and others are possible and important considerations -- but I just want to repeat:
I would also question the possibility of Lyme Encephalitis and whether he may need IV antibiotics NOW.
Hopefully, the naturopathic doctor is lyme literate and member of ILADS. He may also need a LLMD,along with the LL ND. Many LL NDs also incorporate antibiotics.
IF his ND does not consider antibiotics, he may need a LLMD or LL ND who will, along with supportive herbs. -
Posted by Alexandru Matei (Member # 37348) on :
What was your son actually hallucinating?
Posted by jlf2012 (Member # 36002) on :
You have my deepest sympathy. My son is 25 and was just recently diagnosed with lyme/bartonella. He has hallucinations and feelings where things aren't as they should be too. It's such a scary thing! He had night terrors as a toddler and it's almost like those he said but he's completely awake the whole time. His first major symptom several months ago was severe panic attacks. You're not alone. I agree he needs to get to an LLMD or at least a doctor who treats tic-borne illnesses. PM me if you'd like.
Posted by lymeboy (Member # 24769) on :
This is what started my downward spiral. I was riding a motorcycle cross country. I lost my hearing in one ear during the day, and later that night, the road started moving from side to side on me. It was so incredibly scary, and I don't know how I am still alive. After that, I just got more and more screwed up.
Proper treatment has gotten me to a decent place.
Posted by Jen117 (Member # 28156) on :
A stiff neck and what sounds like a partial seizure can mean meningitis. Please take your son to the ER. Remedies are great, once you know he is safely recovering and not in danger of a life threatening illness. Also, hallucinations are not normal. Ever.