posted
I cannot guarantee I have Lyme, I may not. I've read this forum extensively, had the correct blood tests from iGeneX, came back negative, albeit being bitten by 80+ ticks in my recent years.
Main problem I'm having is hypoglycemia. It's very complicated. I'm educated myself about it severely. I'm very much losing brain function from it. I was tolerable the first 5 years, very hard but tolerable. Then it continued, made work hard, diet change after diet change, following every protocol I could find with no success.
My sugar would drop to the 50's 10 times a day or so. Sometimes to the 30's even. My endocrinologist found a high amount of insulin after meals, tried me on meds, didn't work. Even when fasting my glucose would drop event though my insulin would test fine. Hormones all in a whack, low testosterone, FSH, LH.
Seen probably 10 endocrinologists alone.
Now have severe central sleep apnea, white matter damage of the brain, heart issues, am 32 and 147 lbs... I do believe all of these things to be complications of the frequent glucose drops. I do not know the root cause of the glucose drops.
We have bought a Rife Machine a year and a half ago, Emem digital from Travis Kopek of Rife machine builders, however I cannot tell any difference from the machine, ever, good or bad.
Have tried some random herbs, short trials of antibiotics i could get my hands on. One of my ACAM doctors put me on mold medication (nystatin) and DMSA, the mold medication didn't help, the DMSA made my heart palpitate severely and it kind of seemed like it made my neurological condition worsen, although I can't guarantee that.
I at most points now even when my blood glucose is ok, feel like the glucose to my brain is NOT ok. I get very symptomatic now in the low 80s as far as glucose levels are concerned.
I feel like my brain cells are being terrorized by lack of glucose, and I'm reading a lot of new scientific research that proves chronic hypoglycemia of non-severe fashion may damage the brain just as much as severe episodes, and lead to dementia and alzheimers.
Right now it's hard for me to think to type each word, word placement is wrong, families names are often wrong, the words on the screen move around severely, I'm sleeping with an Auto Servo Ventilator, been out of work for 2 years now, see visual snow everywhere, hard to see, my heart rate randomly speeds excess of 180, once setting off the alarms at the hospital of the icu causing the nurse to sprint into the room, every week it feels like I'm more nearing becoming a vegetable or dead, and it's scary.
If I could stabilize my glucose perhaps my brain could fight back and begin a healing process, but I don't know what to help it with, or what's burdening my body to cause it to drop.
Any special miracle Rife Frequencies for such? Herbs that dramatically help besides the commonly listed ones? Anything that crosses the BBB that can heal the cells of the brain, replenish them?
Dunno what to ask for to be honest, so defeated. Thanks for the ear either way.
Posts: 20 | From USA, NC | Registered: Jul 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
We could be twins. My severe hypoglycemia advanced to insulin resistance. I also feel like my glucose roller coaster has done severe damage to my brain and other organs.
I also have central sleep apnea. I am thin with no history of head trauma, unless you count the massive infectious load in my brain!
All of these problems resolved when I fully treated my Babesia co-infection. I was symptom-free for Babesia for 18 months. I could eat anything. I slept like a normal person. Miracle after miracle.
Now, I've relapsed with Babesia and all symptoms are back. Still treating Lyme, Babesia, Bartonella and many other pathogens.
If you are not on CPAP/BiPAP, you must see a sleep doc. It was life-changing for me. Your body needs sleep and oxygen to survive.
I was undiagnosed and chasing endocrine dysfunction diagnoses for 15 years before deciding to get a Lyme test. I was seronegative for Lyme, but low positive for Bart, and positive for Babesia FSH test through Fry labs. Babs was negative through Igenex.
I am loaded with microbes. I have no immune system to register antibodies on the tests. That is common for us long-termers.
The best diet ALL through this nonsense has been low, low, low carb. No sugar or sweeteners. No grains. No fruit. No root veggies. No nuts. Meat is fine. Above-ground veggies. I was allergic to dairy at one point, but I'm OK with it now. Limited unsweetened soy is OK.
When I follow my diet, I feel pretty good, regardless of major infections and other issues. Managing blood sugar is key for me.
If you have tick exposures and these symptoms, you have Lyme and co-infections. With the apnea and blood sugar dysregulation, you have Babesia.
Babesia needs to be treated with antimalarials. I haven't met anyone who successfully treated Babesia with Rife. It's a great adjunct, though.
And I know others with this symptom profile. It's scary, I know.
I'll write more tomorrow.
You should at least start on antimalarial herbs and, like you said, brain healing herbs and supps.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Essential Fatty Acids are critical to brain function. Fish oil is the best source.
Diet needs to be primarily proteins, fats, & above-ground veggies like BoxerMom said (no root veggies, no fruits, no sugars, no grains).
Should also avoid artificial sweeteners, as these can trick the brain into thinking blood sugar is low.
Stevia and xylitol are safe sweeteners because they have no impact on blood sugar levels, nor do they feed Candida.
Eat protein every 2 hours between meals (unless sleeping). Nuts/seeds make excellent snacks.
Chromium is needed for keeping blood sugar levels balanced.
Be careful with ALA and some other supplements & herbs, they may lower blood sugar levels.
Watch out for sugars/carbs in supplements & medications (most tablet/capsule meds use starch fillers; most liquid meds use sugar or artificial sweeteners).
May need other nutritional supplements - especially Vitamin B complex.
May also consider looking into methylation issues, as methylation can have an effect on blood sugar regulation and also neurotransmitters (brain function)...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
When you say you had the correct tests, which ones did you mean? Tested for lyme and coinfections? The problem is that testing is not the final answer, lyme is a clinical diagnosis. Of course, many doctors and patients want to have a positive test before treatment. And some insurance companies do also.
If you could get someone to prescribe a course of doxycyline and then retest, sometimes that pulls up a positive result. Need a lyme doc, who would know this. Or you could get the expensive new culture test.
But it is possible that lyme has caused thyroid problems, and then the other things you describe will follow.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Thanks all for the response, I will address each individually Boxermom: Sounds like a rough ride! I have heard a lot of people's eventually turns into insulin resistance, I'm on year 21 of sugar drops, last 6 years staying the same, just the consequences getting worse. I did get on Cpap, which failed to treat, then BiPap, which failed to treat, then BiPap Auto Servo Ventilator, which treated the majority of the episodes. Can't say I feel better however, but I can tell things progress quicker without it.
Did you ever get to get off the machine? Or do you feel the issue's permanent?
My main hardship with the low-carp diet, is finding a healthy medium, since my glucose is highly reactive, but also oddly reactive to things it should not be. Like I never have high insulin levels fasting, but I do have low glucose fasting, I'm assuming from lacking counter-regulatory hormones. So while low carbing, my glucose tends to want to stay in the mid 70's, and while that may be okay for a lot of people, my brain instead of my body is the first thing to react to my sugar, and it's supposed to be the opposite way around. So now a drop to 78 feels like what a drop to 40 used to the first so many years I was having drops, and just much more able to handle it. So I low carb diet, I stay zombiish, lose weight. Don't know the answer to keep my sugar at a decent level while dieting, which I'm guessing is my growth hormone and other hormones that keeps the body at a normal glucose level when the insulin level is normal. I am going to try it again, I started after reading your post in fact, giving it another shot.
Which anti-malerias would you recommend? I google'd it, since I don't know much of it, saw a bit on Wormwood and derivatives of it, is that what I should take?
Also, do you know from anyones experience of herbs that can heal brain cells/function from low glucose? Or heal white matter lesions on the brain? I've read so much, but it's hard to know what's worked for people because I can't find many people matching up with what I'm going through, maybe I've just not read the right places.
I literally feel like the stages of dementia are on me. I sit all day barely able to walk around or go to the mailbox... typing this has taken me hours. I was academically gifted in so many areas growing up, now it's hard for me to pic up a thin book and get through a page.
Willing to give those herbs a try Thanks so much look forward to hearing more! ------
Razzle; I am taking your advice to heart. I will say one thing you mentioned that I had a terrible experience with: xylitol. I had horrible hypoglycemia after taking it, and I know that's debatable since I have established hypoglycemia, but I have quick drops, over and over again. When I would consume xylitol, I would stay low for hours at a time. I tried it 4 or 5 times so I wouldn't mistake it for the placebo effect. I know humans and dogs bodies aren't the same exactly, but Xylitol is heavily warned that it can kill dogs via hypoglycemia. I wouldn't say it does that to everyone, but a number of things have caused my sugar to drop, including SSRI's, especially wellbutrin.
Razzle would you been willing to give me the laymans definition of methylation? I tried reading the link you sent but it was so many pages long I could not grasp how to deal with the process? The resolution? Thanks so much!
------
Poppy: I didn't really get all the recommended tests. Just the Igenex western blot recommended test. It was around $200 and had to beg about 10 doctors before I found one to do it. I wasn't on doxycycline, but I wish I had been :/ My test showed negative, i did get one star for something, i can't remember, will try to find the test, it's not the easiest thing. I probably won't be able to repeat the test as the test alone at $200 took a year to get that together. As far as I have checked on, and sought into, and contacted databases, there aren't any LLMD's who use IV antibiotics in my state closeby, or maybe in the state at all. Dr Jemsek used to be 30 minutes from me, but that was before I heard about Lyme. There's no way to get me in a vehicle for long trips with my sugar dropping, and even if so, I wouldn't be able to manage it financially. That's why I bought a Rife machine, and am willing to try any herbs available, because we no longer have the resources. Been to 6 alternative doctors or more, all costing thousands, back when I was able to work. Been years and years. My current alternative doc is the president of the ACAM, his name is Dr Speight, but he was very honest that he may not be able to help me. I appreciate his trying though. Thanks Poppy Posts: 20 | From USA, NC | Registered: Jul 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ive been hypoglycemic since 16 but able to control with diet (im 63)
could not take meprom-sugar base-dropped to 40-almost died
artemesia and abx and quinene worked for me
my hypo was never as bad as you guys describe it but i know it is common with lyme---as stated above lyme testing is not that impt---you need treament by a good llmd...one who can sort it out
alot of what you might be blaming on hypo could be lyme
hope you can find a good doc-llmd
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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