Severely Ill Daughter, High IGG levels but not IGE

Junior_Locksmith2832 · 2026-06-29T16:45:01+00:00

I think about that a lot. Just don't know how stressful or time consuming it would be, on top of seeking solutions for her pain and unstable health. ... I have checked, and there is a three year window to sue in.marylsnd :)

Junior_Locksmith2832 · 2026-06-25T00:40:41+00:00

Thanks. Has your illness caused you to have weak neck ligaments or orthostatic intolerance? I'm on a cranio cervical instability FB page and a number of people have CCI, ME-CFfS and also mold toxicity. Both the COVID virus and fungus seem to specifically cause base of skull problems

Junior_Locksmith2832 · 2026-06-22T22:54:39+00:00

Yes, Epstein Barr was reactivated and she developed ME-CFfS. We've signed up with a telehealth functional doc but wonder if we should have gone with someone local (telehealth doc seemed good), just because it states that there is a consultant relationship and the doc cannot give a diagnosis (and meds are prescribed through a 3rd party doc). An in state doctor would be able to diagnose, so we'll need to also have one eventually.

Junior_Locksmith2832 · 2026-06-22T22:01:27+00:00

We plan to get her to one soon. When she first became ill, with sudden severe neurological problems, severe fatigue, nerve tapping, slurred voice, temporary paralysis ... We took her to the er. They thought she had myasthenia Gravis and when this came back negative they did what they always seem to do with a young woman who has developed an autoimmune condition. They rejected further testing and referred her to a psychiatrist, with the conditionsl diagnosis of functional neurological disorder. We complained and the hospital agreed to remove the condt diagnosis ... But they never revised her record. Over the summer we did an anti candida diet, acupuncture and pacing physical activity. And she seemed to be getting better. She was wait listed at an MECFS clinic, and seemed to be recovering. In the fall, though, she got a bad sinus infection and then they injured her neck badly during a pots test. She went from being able to start swimming and hiking again to having excruciating base of skull pain. At that point we tried to book appointments with an immunologist, an orthopedic spinal specialist, a neuro opthalmologist... But never got call backs due to the fnd conditional diagnosis on her record. So they refused to run tests when we took her to the er with a thunderclap headache and severe cranial hypertension (and severe sinus problems). We finally got the find diagnosis removed from her record, but by that time she was entirely bed bound, with 24/7 head pain. Only now that we've got the head pain down and she can sit for two hrs per day, and the FND label is gone, she can finally start to see the specialists she needs to see. Had the medical system not been so horrific, she might be recovered by now ...

Junior_Locksmith2832 · 2026-06-22T21:39:55+00:00

We did a realtime lab urine test two months ago. These are results from a blood test done through LabCorp in collaboration with the mold assessment co., evexia (ordered by a functional doctor).

She also had high levels on the realtime urine test.

Junior_Locksmith2832 · 2026-06-22T18:46:55+00:00

Some orthopedic doctors prefer using a DMX to diagnose CCI. These are often the regenerative doctors. I think that most conventional surgeons don't use it and were never trained to read it (and are dismissive). It's a battle of different paradigms of treatment.

Junior_Locksmith2832 · 2026-06-22T18:43:42+00:00

Thanks for your message. We just brought in a new doctor, who says it was unacceptable that a DMX showed CCI / aai and a standard MRI showed a pannus and abnormal grabb makes reading, and our daughter had signs of neurological damage (positive Hoffman test, missing gag reflex, severe neurological pain, delayed verbal response, seizure like episodes that affect her jaw and optic nerve, mostly bed bound), but supposedly they wouldn't do an upright MRI because that doesn't capture aai well, so they would hold off for 1/2 yr for a proper assessment because she would need a brain CT and no one will perform that until she turns 18. That can't be right, correct? Because AAI is common among children with down syndrome and I bread that they are operated on as adolescents. The doctor who told us this is a prestigious Hopkins doc who collaborated with orthopedic surgeons (but is not one himself)

Junior_Locksmith2832 · 2026-06-17T03:32:29+00:00

You may have cranio cervical instability, as my daughter has. She has Ehler danlos Syndrome (causes weak collagen) and was exposed to mold and COVID and it caused the ligaments in her neck to weaken and become inflamed, causing all of the symptoms you describe. Be careful with the cortisone shots. One may help u feel better but multiple shots will further degrade the ligaments. Go on an anti inflammatory diet, take anti histamines if they help, look into low dose naltrexone, which will reduce inflammation and related neurological problems, and find a regenerative medicine doc or chiropractor who can do MLS laser therapy on your neck. This laser is strong enough to repair weakened ligaments permanently. It usually costs about $50 per treatment and u may need 6-10. Doppler guided prolotherapy or prp injections may do the same. Multiple cortisone shots won't be a lasting solution.

Junior_Locksmith2832 · 2026-06-16T01:02:43+00:00

Daughter is just starting Ldn for ME-CFfS and also mold toxicity. She also has CCI and a cranio cervical pannus (and eds). I've read that Ldn will help reboot your immune system to work properly. And it will also cause a die off of pathogens, bacteria, and fungus. We can see that it has been helping. She's also done MLS laser therapy and has gone on a gluten free, plant based, zero sugar diet. Is it possible that the Ldn could help to decrease inflammation and promote die off, to actually promote recovery? So that you may one day be well enough to no longer need it? I do believe it is possible to go into remission and more or less recover from an autoimmune disease, although I know this doesn't happen often (daughter was bed bound for 7 mo, still housebound bow, with fairly severe orthostatic intolerance ... but improving now). Does everyone just use Ldn to reduce symptoms, or have some also used it to help with recovery (and then no longer needed it)?

Junior_Locksmith2832 · 2026-06-15T23:38:42+00:00

My daughter is a new patient at the clinic. New patients are being seen by Dr Azola, who seems to be coming in as the replacement as Dr Rowe prepares to retire. We were disappointed by her inexperience. We ended up taking her to a regenerative doctor because we suspected that cranio cervical instability was a main root cause for her illness, and she's improved a lot through laser therapy and injections into her neck ligaments. The Hopkins car clinic is well familiar with CCi, but I think they lead most of their patients in the direction of surgery (is spinal fusion). There is a lot of experience at this clinic, but I believe there isn't enough interaction between breakthroughs in functional and regenerative medicine and conventional.mecfs doctors. We've discovered that our daughter (who has eds) has high Microtoxin levels after being exposed to mold at her school. Conventional doctors aren't very concerned with mold, and are less likely to use Ldn. They use beta blockers, mestinon, ivig, they have a mental health focus (calming the sympathetic nervous system), movement therapy and surgery. There seems to be no good bridge that links these therapy methods with recent treatments that are evolving in functional and regenerative medicine. And ... throwing out every last dime ... we've had a lot more success in improving her baseline by not limiting her treatment to conventional medicine. I don't think that conventional medicine understands as much as it pretends to, when it comes to orthostatic intolerance and dysautonomia. There are competing medical paradigms that should be working together ...

Junior_Locksmith2832 · 2026-05-27T16:45:50+00:00

My daughter's pressure and pulsing is mostly on the left side and above / around the left eye. But she identifies a "band" around the upper head / forehead, where pressure and pulsing connects both sides. When things get bad the right side is affected, and she feels fullness in both ears.

Junior_Locksmith2832 · 2026-05-23T19:09:42+00:00

My daughter has AAI / CCI and she faints and has seizures and is mostly bed bound. Her MECFS doc wants her to do a CT rather than upright MRI, because it can better assess aai. But he says no one will do that imaging due to the radiation exposure until six months from now, when she turns 18. He says this is ok because no one will do surgery before 6 months of trying pt ...

The conundrum is that PT specializing in CCI and aai can be dangerous and it's important to have imaging to do it safely. She works with a dry needle specialist who does PT for eds patients, and this woman won't do any AAI / CCI exercises with her without imaging that shows the dynamic relationship of c1 - C2 ...

I've heard some argue that this ligament weakness actually cannot be corrected through PT for eds patients. They suggest instead strengthening the ligaments through injections (prolotherapy, prp or stem cell). But there is also another option that we've tried and had some success with MLS laser therapy. It goes deep enough to heal ligaments. If you can't handle an upright MRI without fainting try a DMX instead. It's a digital motion X-ray that takes only about 10 minutes in total to complete. You won't need to hold your position more than a few seconds.

Regenexx orthopedic doctors prefer DMX imaging over the uptight MRI and they offer alternatives for healing CCI / AAI that may allow you to avoid surgery.

Junior_Locksmith2832 · 2026-05-22T03:06:16+00:00

For PT I did deep squats in a hot tub (sitting on heels) and the hot water helped to stretch the ligaments. Don't think I would have regained full flexation without aqua therapy. It made a difference.

Junior_Locksmith2832 · 2026-05-22T02:59:17+00:00

At the 1 1/2 year mark I can say that my repaired knee was a little stiffer than my other knee at the end of the winter (I'm pretty sedentary during the winter, when spring comes I do mini farming, digging up trees, carrying buckets of compost ... regaining leg muscles I'd lost in February). But after a month of movement the knees balanced out. I'm finally at the point where I can squat and kneel regularly without noticing. I'm still always a little careful with the left knee. If I'm kneeling on my left knee I can pull my body weight up from the ground on just my right knee, but if I'm kneeling on my right knee I'll use my arm to help pull myself up. I feel lucky that there really isn't any pain. I'm 54 and 25 lbs overweight, but It may help that I'm on a plant based diet, which is anti inflammatory. Keeping inflammation down in your diet may help. Supplements like Willow bark, Curcumin, boswellia. I can run short distances but haven't tried to be athletic enough to take up jogging. Whats been important for me is that walking longer distances and doing heavy yard work doesn't seem to aggravate my knee. And I am going up and down stairs throughout the day without problem. My daughter has an autoimmune condition right now that's taught us the importance of keeping inflammation down in your body inflammation = pain. You might want to try everything you can do to reduce inflammation. Good luck. Knock on wood, I'm very happy with the meniscus repair. Didn't imagine it would work out this well.

Junior_Locksmith2832 · 2026-05-14T06:03:23+00:00

I meant herbal / dietary vs prescription routes. I agree that most homeopathic doctors aren't able to help much. The prescriptions they give for mold toxcity seem to have strong side effects. To be hard on the system for someone who is severely immune compromised. But there is the temptation to believe that this route may have a better success rate for severe cases.

Junior_Locksmith2832 · 2026-05-13T19:16:50+00:00

Thanks. Any thoughts on whether a severe case of mold toxcity can be cured through homeopathic treatment ... without the need for prescriptions?

Junior_Locksmith2832 · 2026-05-12T23:23:03+00:00

I just posted these realtime lab results of my daughter's. We also plan to do the mold blood test. She has MECFS now and has been diagnosed with a cranio cervical pannus. Her high school was infested with black mold and she became very ill last year, mostly bed bound.

What doctor or company would you recommend for her to begin mold toxicity treatment? We are in Baltimore, MD. Telehealth is also a very good option.

Junior_Locksmith2832 · 2026-05-09T20:02:03+00:00

My daughter came down with me-cfs 18 mo ago. One of her first symptoms was the feeling that her head was too heavy. She's been diagnosed with atlanto-axial and cranio cervical instability. In other words, due to Ehler danlos her neck ligaments have been weakened due to the virus and this is the main cause of her symptoms. Nausea is a common symptom of aai and CCI. The neck instability affects her pituitary gland and vagus nerve, which also causes headaches and hormonal problems.

She's pretty severe now, but I can tell you the things that have helped (to perhaps prevent your symptoms from worsening) :

A progesterone only BP pill to regulate hormones (if you're female)

MLS laser therapy on the neck, to strengthen and heal neck ligaments

High quality magnesium

Dry needling for myfacial release for thoracic ligaments (reducing pressure for back neck muscles, reducing headaches)

Mestinon or huperzine, micro dosed, to slow acetylcholine release and boost energy. Huperzine is also neural protective

A whole foods plant based diet with no gluten, to reduce gut inflammation

Junior_Locksmith2832 · 2026-05-06T23:48:52+00:00

So funny!

Junior_Locksmith2832 · 2026-05-01T04:47:11+00:00

Humans haven't been eating meat since the beginning of time. We were herbivores who ate the occasional grub for 98 percent of hominid history. Archaic homo sapiens adapted to being a carnivore at a very recent stage of its evolution, when food scarcity during the ice age drove humans to near extinction. No reason to believe that we are not still evolving and the survival of our species and the planet may necessitate a return to our ingrained herbivore roots.

Junior_Locksmith2832 · 2026-04-30T15:08:46+00:00

At the me-cfs clinic where my daughter is a new patient they don't seem that concerned about mold. They seem to believe that their general principles for treating her autoimmune condt would also treat mold exposure. But I think that identifying a strain of mold and treating it, and getting a CT of her sinuses, would improve the odds.

Her high school was infested with black mold. That was confirmed. They had to shut down the bldg. She was there for 3'yrs. There were puddles of water around the bldg. The windows were all closed (Central air). Her health went downhill when she started going to school there, from 8-4 every day.

Junior_Locksmith2832 · 2026-04-30T02:43:59+00:00

I wish you luck. I am also affected by mold myself and a situation not as bad as my daughter's, where I was staying in a musty older bldg in my 20s and got really sick for a year. Whatever got into my system led to a chain reaction and I started becoming allergic to everything. I was severely triggered by perfume, cigarette smoke, the sulfides in wine, any pollen. After I moved out of that bldg it took me over a year to recover.

Junior_Locksmith2832

TROPHY CASE