Let's see if I can describe what's going on, because I feel like I'm going to die, but I know that's irrational.
It's not textbook air hunger (no gasping, labored breathing, etc.) -- it's more like I'm not breathing frequently enough or I'm breathing too shallow, and I'm afraid I'll just stop or not get enough oxygen if I sleep and I'll die.
And I'm freaking exhausted. E-x-h-a-u-s-t-e-d. Night terrors wake me frequently when fear or just plain ol' insomnia aren't keeping me from sleeping. (Idk if they're related to Lyme or not, because I've also got PTSD from past trauma).
I'm trying to sleep in a recliner, hoping that being somewhat upright will help...nope, not working.
Restless legs/body keep me awake, also, and reinforce the anxious feeling that I might die.
I've got my usual migraine and nausea, but with everything else going on, they just make me feel even more like I'm going to die.
And then there's the vertigo that started this past week. Argh!
I don't think the problem is any of these things individually, but with them all together I feel like I'm going to lose my mind any minute -- and then die, of course.
Help? Or maybe none of this is Lyme-related and I'm genuinely going crazy?
Posted by Lymetoo (Member # 743) on :
Are you able to connect it to any foods?
Posted by SLH516 (Member # 48060) on :
Hmm...the only things I've eaten in the last day that I haven't had in ages (or ever) are Nilla Wafers and a store-bought mole sauce. I'm officially done with both of those just in case.
I make a practice of avoiding MSG, but I caved on a dish for dinner last night and leftovers today. Done with that, too.
Thanks for the suggestion.
Posted by TF (Member # 14183) on :
Well, I hope it makes you feel better knowing that I have read posts just like yours over and over on LymeNet over the years.
So, you are a normal lyme patient I would say.
Lyme anxiety is so terrible. It is torture. I suggest you get on an anxiety med if you aren't already.
I don't know if you are treating lyme already or what meds you are on. Hopefully, after a few months of good treatment (but not lousy treatment), you will feel much better.
Just want to reassure you that you are not crazy at all. You are just experiencing the torture of lyme disease.
Posted by Lymetoo (Member # 743) on :
Lyme can definitely cause anxiety. I was just thinking about what foods containing salicylates do to me.
Restless legs, breathing problems and anxiety are part of it.
Posted by SLH516 (Member # 48060) on :
TF, that definitely helps. It's good to know that if I feel crazy and like I'm dying, I'm normal and not actually crazy or dying. Not yet, anyway.
I tried telling my body that in the midst of it all, and it didn't believe me. The certain death feelings seem to have passed now, though...whew.
Posted by tulips (Member # 44773) on :
I don't know about shallow breathing. (I had air hunger.) The anxiety, insomnia, exhaustion, night terrors, restless legs, vertigo. I've had those. Are you seeing an LLMD for antibiotics or are you going to treat with herbs and supplements?
Every bit of it sounds like Lyme and Co. Let us know what you're taking for it - for the anxiety, exhaustion, night terrors, vertigo, a good LLMD should be able to fix that with Lyme specific antibiotics. Or you could get a copy of "Healing Lyme" for the herbal protocols for Lyme.
For restless legs, taking Hylands Restful Legs (homeopathic from Walmart or Amazon) works - so does Magnesium. Magnesium Citrate or Magnesium Malate doesn't cause diarrhea. Antibiotics or the right herbs will take away the feeling that you're going to die.
For the anxiety, night terrors and dread, I took Cat's Claw (Buhner's book) this last time. Hope this helps you.
Posted by Brussels (Member # 13480) on :
When you describe your symptoms, they were almost exactly my herxes.
I know they were ONLY herxes because they stopped every time I took binders in big amounts.
I don't know how you guys survive this ordeal. I stopped playing with herxes when my whole body went paralyzed.
It started simply with heavy legs, then they got 'heavier', then I started feeling I couldn't breathe, I couldn't take in air, then my whole body stopped working... It was horrible.
Since then, I tried to avoid herxes as much as I could.
Milder herxes gave me anxiety, some brain fog, lack of initiative, I got angry for no reason, some fatigue.
Bigger herxes messed my heart, my whole brain was in fire (like full anxiety), my blood pressure went up, ...
... I had very much difficulty to feel air was coming in properly, herxes still made me those awful DAY nightmares (I was so tired, that I saw those night freaking visions even during the day).
I felt stinging pains in my heart or ribs, I thought I was going to collapse of a heart attack.
The funny thing is that, when I took a mix of chlorella, bear garlic and MSM, ALL THOSE SYMPTOMS vanished in a matter of minutes, even.
It was like seeing the light of god. THe reaction was so fast, that I couldn't believe it was actually happening.
So about 70% of what I attributed to lyme and coinfections, were simply, herxes.
I do not agree that we HAVE to suffer this way to heal from lyme.
I do think finding the right binders and taking them many times a day save one's quality of life. Even fatigue can be many times lifted only through binder ingestion.
Many of you assume herxes are not dangerous, while in the medical literature, herxes are known to even kill.
Posted by TF (Member # 14183) on :
Brussels, I do not believe that this poster is on any treatment whatsoever due to financial insufficiency.
So, when you keep talking about her having herxes, I am not sure that this is what it is in her case since she has not yet started any type of treatment that I know of.
She was considering doxy alone last month and also bee venom therapy, but I don't think she has started a single thing.
So, with that in mind, perhaps you can give her some advice.
SLH516, please tell the folks the treatment you are currently on so that their responses to you can be more helpful. This always helps us to figure out what is going on with the person right now.
Also, have you yet been tested for lyme and coinfections?
Brussels, I reviewed a number of her posts since she doesn't tell us her current treatment. Doing that may make a big difference in what you want to advise her.
Posted by kms1990 (Member # 41700) on :
I second what others have said. What your describing is exactly what my herxs are like. After seeing this repeat for me every 5-10 days I found a solution. I stop all abx for 2 days and detox like crazy. Then I feel better I restart the abx. I am slowly but surely beating lyme and bartonella this way.
I believe these sensations are related to micro circulation being disrupted which leads to tissue hypo profusion which really is like suffocation!
Posted by Lymetoo (Member # 743) on :
Please read what TF wrote above.
Posted by SLH516 (Member # 48060) on :
Dangit. I just had a ridiculously long post typed out and the my computer ate it. Are drafts stored anywhere similar to the way yahoo mail works? So annoyed.
Posted by TF (Member # 14183) on :
Nope!
So, from now on, when you write a really long one, copy and paste it to your word documents or notepad or similar spot on your pc where you can go and get it again. Or, write it in your Word software and copy it to LymeNet.
I hate when that happens also!
Please tell us your treatment and tests so far.
Posted by SLH516 (Member # 48060) on :
TESTING/DIAGNOSIS:
Not doing blood testing due to high cost and high false negative rate.
Seeing a LLND next week for clinical diagnosis.
TREATMENT:
Will do BVT alone due to higher cost of other treatments. (Decided against doxy.)
Can only afford to see LLND once for diagnostic appointment, then on my own with the BVT.
CURRENT MEDICATIONS/SUPPLEMENTS:
- Wellbutrin and Lamictal for >10 years
- Pristiq for 6 years
- Propranolol for 1 year (helps migraines)
- Omeprazole prn for 1 year
- 800mg Ibuprofen/50mg Benadryl nightly (helps with mild migraines)
- Started Mg malate 300mg daily about 2 months ago.
MOST NOTICEABLE SYMPTOMS CURRENTLY:
- Migraines have improved in frequency and severity in last couple weeks, but other symptoms have appeared or increased in their place.
- Increase in debilitating fatigue (39 hours out cold is my current record).
- Intermittent vertigo (appears to be CNS vs. positional); new symptom this past week.
- Phonophobia; new symptom this past week.
- Aphasia/dysphasia worse/more frequent this week.
- More intense emotions (wanna-knock-someone's-head-off fury or sobbing for no identifiable reason).
I hope that's most of what my computer ate earlier.
Posted by Robin123 (Member # 9197) on :
I saw a homeopath doctor once and he told me to take pulsatilla 12x tablets - I put one under my tongue one nite, woke up high and happy and couldn't remember why!
It's an idea - to see a homeopath, since they can discuss your body's inclinations and maybe come up with a remedy that will relax you.
Also, don't forget to take some deep breaths to get more oxygen in. Like, take 10 deep breaths when you are feeling like you don't have oxygen, and see if that makes you feel any different.
Posted by HW88 (Member # 48309) on :
I do not have all of your symptoms, but I do have many--especially the mood issues. I too am just starting on this process. Unfortunately, you sound like a 'normal' lyme patient from all I've read here and other places.
People are helpful here and kind. Hang in there. You are not alone.
Posted by foxy loxy (Member # 47053) on :
vitamin D can help restless legs...
Posted by WPinVA (Member # 33581) on :
I had most of your symptoms - due to bartonella, babesia and Lyme (and perhaps more that I didn't even know of).
Why not consider testing? You don't have to spend a lot. You could at least do standard lab testing, which insurance covers. LabCorp in my case actually picked up babesia duncani and Lyme.
Posted by tulips (Member # 44773) on :
I don't know much about BVT but in case you wanted to do Cat's Claw too, it got rid of the crazy nightmares and neurological problems (for me anyway). It's easy to take too (in Peru, it's used for gastric ulcers) and a bottle of it is pretty economical.
Posted by teragram (Member # 45011) on :
Sounds like Babesia; all of those symptoms are classic Babesia, except that the nausea could also be Bartonella.
tulips how do you get a bottle of BVT? I don't think that's possible in the US.
Posted by MannaMe (Member # 33330) on :
Sounds like Babesia to me ........... my hubby had a lot of those symptoms before diagnose and treatment.
Posted by SLH516 (Member # 48060) on :
teragram, "BVT" actually just stands for the name of the treatment -- Bee Venom Therapy. You can get a vial of bee venom here in the US to inject instead of doing stings, but it's expensive, and I think you have to have a Rx.
Posted by Brussels (Member # 13480) on :
Herxes can come with or without treatment.
Pathogens live and die on their own many times a day. With or without your intervention.
When they die, there will be loads of die-off debris, as they live short. Their dead cells, pee and poop must be flushed away.
Your immune system is also not totally dead, or you wouldn't be living.
So it is fighting a bit, low gear, and killing pathogens, so your body has debris from your OWN T-cells, macrophages etc.
These debris from your own immune system have also to be cleaned. Plus the debris from nutrition, respiration, etc, belonging to normal life processes.
Your body will have to get rid of the normal life process toxins + the bacteria die-off garbage.
It should go fine IF your body were not overwhelmed by disease or by excess of toxins.
---------------------------------------- Symptoms you describe could be many things.
Mold, candida, borrelia and coinfections, allergies, food intolerance, food allergies, even electrosmog, God knows what more.
It took me many months to discover that my symptoms were not ONLY from infections, but MOSTLY from toxins.
--------------------------------------- Toxins are within us, with or without infections.
In my view, today, one of the MAIN REASONS we get sick with lyme is DUE to excess of toxins.
That means these toxins are within our bodies PREVIOUS to lyme and candida (as everyone here will have, sooner or later both problems).
Posted by Brussels (Member # 13480) on :
Anyway, if you go normal way people go, you won't take my advice.
You'll first go, like everyone, trying to find out OTHER culprits such as pathogens, or defects in detox systems, or organs in trouble...
I also did that!
What I suggest you guys here is simply some sort of empiric experiment. I mean, take binders and see for yourself!
But please, don't take it badly.
If I had to go backwards in time, I would have started with binders from day one, with or without killers.
Look now, it's been more tha 7 years I'm lyme free.
I STILL take binders when I feel toxins are moving around.
I'm STILL doing heavy metal detox and if I do not take binders, I feel crap.
What I fear most, is that if I do not take binders, I will fall sick with lyme again, and that is the LAST thing I want.
-------------------------------------- WITHOUT LYME or CANDIDA or any known active infection, at this moment, my toxic symptoms STILL TODAY are:
- funny feeling in my lungs, as though I have to breathe in deeper to get air inside;
- rise in blood pressure (not astronomic, but perceptible)
- problems to fall asleep, problems to remain asleep the whole night
- more sensitivity to electrosmog
- stomach ache (clear and strong)
- liver ache and gall bladder pain
- urine gets darker, smelly, and I may get infections (it happened twice recently)
- I feel literal pain in my kidneys (back)
- my brain gets clearly foggy
- I lose will to do anything physical (like sports, bike, walk or gardening)
- I feel tired, in bad mood, nervous, angrier
- I lose initiative, may want to eat more or want to eat less
- I will have loose stools (if I don't treat that tummy ache above with binders).
- when I wake up in the morning, my toes and fingers are like a bit swollen (probably lymph is clogged...)
---------------------------------------- Not that all that happens WITHOUT any known active infection to my knowledge:
I just need to take a heavy metal mobilizer, or simply minerals, or use high frequencies on my body.
sometimes, that may happen without any treatment whatsoever. Probably because of foods, the air we breathe, the water we drink.
Posted by hopeandfaith (Member # 19884) on :
Obviously there has to be some type of treatment plan in order to get better from these symptoms. First of all, not sure if bee venom will be the answer if you don't know what you're dealing with. Usually if you have lyme or co-infections it will be a multi-pronged approach that helps you get better.
With that being said, I have babs and bartonella and often find that as the evening progresses I get more and more anxious. Despite even the worst fatigue I have to take something to help me sleep.
It's an awful feeling and I believe it ties in to my bartonella. I've been battling these infections for 12 years now.... Very frustrated and discouraged. Posted by lookup (Member # 44574) on :
I'd look at homeopathic Aconitum napellus as it covers the symptoms of restless legs, the feeling of fear that feels they will die soon, anxiety with impeded respiration and night terrors.
There are other remedies but I, myself, would start there.
Exhaustion-- we started using amber colored glasses that filter out blue light so the pineal starts making it's own melatonin. Blue stops the body making melatonin.
Put glasses on two hours before going to sleep - every night. Try to go to bed by 10pm every night. Wear them even if getting up in the night. Getting sleep decreases inflammation.
Uvex Skyper Blue Light Blocking Computer Glasses with SCT-Orange Lens (S1933X)
Drop anything that can inflame- gluten, dairy, msg containing foods (Chinese food for one), sugar. We found those foods made vertigo and anxiety much worse.
Breathe. Big inhale for 4 seconds. Hold 7 seconds (oxygenates). Exhale 8 seconds (calms the heart).
This kind of breathing done in a mindful way has been very helpful to our son. So much so that he wished he would have started doing this years ago.
It has really helped him to recognize how much he locked up with the trauma of Lyme and stress.
Along with this breathing he tells himself "This will pass. It always does."
I hope you feel better soon!
Posted by SLH516 (Member # 48060) on :
Although I'm sorry that other people here experience that "I'm going to die" feeling/thought/sense/whatever-you-call-it, I have to admit that I'm glad to know that other people "get it."
How in the world do you explain that to someone who hasn't experienced it before? I definitely thought I sounded crazy (and definitely felt crazy) until some of you "normalized" it, and it's such a relief to know that I'm not the only one losing my mind out here! ;-)
Brussels, you said "Anyway, if you go normal way people go, you won't take my advice." Haha, thanks for the chuckle. What binders do you use?
Hopeandfaith, I'll be doing the bee venom alone because that's all I can afford (are ya'll sick of hearing that yet?), not because I think it's all I'll need. I'm nervous about some cos it might not cover, but I can't/won't stress myself out about things I don't have any control over at the moment.
Maybe at some point down the road I'll have the resources to address things that the BVT might miss, so I'm holding out hope for that. You never know what might happen!
Posted by sparkle7 (Member # 10397) on :
People here have given you some good advice. One thing I can add is that putting on some headphones & listening to some Dr. Jeffrey Thompson helps to de-stress. You can listen to it for free on Youtube.
He uses binaural beats in the music & it's very calming. Also, look into the Monroe Institute. They have many good CDs you can get to help with all kinds of issues.
Copy this into google & it comes up with a bunch of them -
You may want to look in to the NO-ONOO cycle and how it relates to Glutamate-GABA imbalance and overactivation of the NMDA receptors.
You know, its not the bugs that make you feel like crap, its your immune system doing all crazy things and going out of control!
The NO-ONOO cycle is the CENTRAL KEY in chronic illness that explains a lot of the symptoms people experience.
NO-ONOO becomes a vicious cycle when you have chronic infections like lyme, and is THE primary cause of oxidative stress in your body. It leads to immune up-regulation (through nf-kb), psychiatric/mood symptoms (BH4/neurotransmitter depletion), fatigue (mitochondrial damage) and puts you in a severe state of "fight or flight" and that reinforces the cycle to activate even more (through GABA imbalance and NMDA receptor problems).
I wouldnt be suprised your "going crazy" symptoms are caused by this vicious cycle!
Just killing lyme might not be enough to escape from this cycle, you may need other methods to calm it down. Cytokine buildup and heavy metals severely stress this cycle even further so using binders can be important (like Brussels suggested). Reducing nf-kb, quenching the oxidative damage from peroxynitrite, restoring BH4 levels and restoring NMDA receptor activity all seem to be very important.
The NO-ONOO cycle is actually the primary problem when people talk about MTHFR issues in chronic infectious disease.
So perhaps you may want to look at GABA initially for some calming effects, but remember the cycle is bigger than that so other interventions can help over time as well.
Posted by S13 (Member # 42830) on :
Incidentally the reason why CBD oil is incredible for lyme and other neuroinflammatory diseases is through downregulation of this NO-ONOO cycle. Chris Shade (mercury detox expert) talks about the benefits of CBD oil in this presentation:
Skip to 36:30 where he talks about lyme disease, or to 45:35 where he summarizes the benefits of CBD oil when it comes to the NO-ONOO cycle. Interesting stuff!
Posted by foxy loxy (Member # 47053) on :
S13,
I think you are right on in your theories...
I have been sick so long and have whacked and whacked at lyme and co's... I am still struggling with Babesia, but
I feel a lot like the person who started this thread. I have been more and more inclined to think I have a glutamate/gaba imbalance.
I started l theanine, and already I think I can tell a difference. I am trying to decide if I should go full sail into gabapentin or keep whacking the Babesia.
def can relate to feeling like you are going crazy along with anxiety, nerve sensitivities and sensitive hearing... exploding head etc...
any advice?
Posted by sillia (Member # 23994) on :
SLH516, you will get better with treatment! If the BVT is not enough (I have no idea how that works), keep in mind there a very effective herbal treatments that are not real expensive.
For the short term, I think some of your symptons would improve with more magnesium. It's good you are taking the oral Mg. An easy way to get more is with a topical spray--you can spray it on areas that are hurting, or just spray it anywhere.
This is called Magnesium Oil and is found at any health food store for $10 to $15.
Another way to get the soothing effect of magnesium is to take an Epsom salt bath (2 cups of the salts and a cup or so of baking soda.) Sometimes during the worst of my symptons I felt the bath was saving my life.
Hang in there!
Posted by S13 (Member # 42830) on :
quote:Originally posted by foxy loxy: S13,
I think you are right on in your theories...
I have been sick so long and have whacked and whacked at lyme and co's... I am still struggling with Babesia, but
I feel a lot like the person who started this thread. I have been more and more inclined to think I have a glutamate/gaba imbalance.
I started l theanine, and already I think I can tell a difference. I am trying to decide if I should go full sail into gabapentin or keep whacking the Babesia.
def can relate to feeling like you are going crazy along with anxiety, nerve sensitivities and sensitive hearing... exploding head etc...
any advice?
Normalizing the NMDA receptor can be of benefit, so moving forward with theanine and perhaps some gaba seems to be a logical path for you. Maybe add in a bit of p5p (B6) and avoid other stimulants of the NMDA receptor. Going the gabapentin route might be of benefit, but tbh i dont know. I personally am very careful now with synthetic medication. But that is your own choice.
Remember the NMDA receptor is only one of the triggers for the excess in NO and resulting ONOO production. Reducing ammonia, LPS, heavy metals, nf-kb and directly quenching the oxidative stress with antioxidants, bioflavonoids (diet can go a long way here!) and working on BH4 recycling should help a lot more. But this is all relative new stuff so read up about it, do your own research. Very important!
Posted by foxy loxy (Member # 47053) on :
Uggh sounds complicated! Thanks S13. I am going to bark up this trail and see what happens...
L-theanine DOES seem to take the edge off, but I am severe enough I am flirting with gabapentin.
I am a bit scared of gabapentin, because seizure meds like that aren't without side effects etc...
But too much glutamate causes cell death!! creepy.
Posted by S13 (Member # 42830) on :
Yes it is complicated, thats why chronic illness is just difficult to solve. But the NO-ONOO model provides a lot of explanation to why certain therapies can be helpful with chronic illness and can really give you a lot of ways to further optimize or streamline your path towards healing.
Ive long figured out that blindly trying to kill bacteria with antibiotics is not always the best way to go when we are chronically ill. Get the body to heal and fix itself with the proper support. What you do (and dont do) can make all the difference.
Just be careful not to focus solely on the NMDA receptor, like i said before the cycle is a lot bigger.
But actually not doing anything at all can be of great help. And with that i mean water fasting! From what ive read from other people, and own experience, water fasting can really reduce the oxidative stress over time, with lasting results. It somehow unspins the deadly NO-ONOO cycle, possibly by removing constant oxidative stress triggers in the body, like fat deposited toxins. The same could be realized with binders like cholestyramine for example, but water fasting is way more efficient (and cheaper also!). The downside is that you will literally feel like dying while you are doing it. The more deep you have sunk in the NO-ONOO cycle, the more horrible you will feel while fasting. It does get easier over time if you do several shorter fasts though (like 1-2weeks). So if you have no other options left you can always try fasting! Also my psychological symptoms were virtually non existant while fasting. Maybe it has something to do with the ketogenic mode your brain is operating in while fasting. Ive done a 8 day fast a month a go and made some very nice gains. I would do it again, preferably even longer this time, but i have to gain weight first. Im horribly underweight already (50kg at 1.83m).
Posted by foxy loxy (Member # 47053) on :
wow, S13, that is disciplined to go that long without food! I would be careful, you are thin!
I think I am scared to try it. I also am very thin. Not sure If I could do that anyway. I tried fasting a few days and got wretchedly sick with a headache nausea and the like.
![[Frown]](frown.gif)