Anyone improve from bed/housebound to high level of functionality?

[LisaGoddard]

Thanks for your reply! I bought some (AOR Classics Series) the other day after reading your post. It recommends 1 to 6 capsules/day (250 mg), and I wondered whether more was better. Perhaps I'll stick with 3 then.

The max of 3 capsules was just gutdoctor's recommendation so don't place everything on it. It took about 2 weeks for me to feel the benefit. I'll check this thread from time to time so please do let me know how you go. All the best, Lisa

 

[penny]

I've had some improvement lately, maybe enough to 'qualify' for putting my story in.

I've been sick for about three years, so not so long I guess... The first year + I tried to push through (didn't know what was wrong yet), and keep working as much as possible, though not terribly successfully. I went on disability leave for the next year and was predominately at level 2, sometimes 3. A couple of brief (a day or two, usually no longer) spells of being able to do a bit more - though not work.

My symptoms when I was at my low levels were: fatigue, extreme cognitive difficulties, horrible short term memory, OI, muscle pain, joint pain, sleep dysfunction, hypersensitivity to sound/light/touch, gut dysfunction, muscle cramping, muscle weakness, muscle unresponsiveness (like the communication between my brain and muscles was broken down), tingling/numbness in muscles, that's all I can think of...

I returned to work still in pretty bad shape. It was that or apply long term disability and I didn't feel like I was 'ready' to give up my career without one last 'try' - a stupid gamble perhaps but that's what I did. Also honestly I was more afraid of navigating the maze of applying for LTD than trying to go back to work, which is sad. The first 5 months were miserable - I couldn't drive myself to work and a 'good' day was when I could fake it (sit up straight and speak somewhat coherently when spoken to) most of the day and I didn't feel like crying from pain and exhaustion at the end. I did not expect to be able to do it much longer.

About four months ago I realized that I was starting to feel a bit better, I started driving myself to work and 'good' days started to involve some actual productivity. This trend has continued. I think I'm probably at a 7 or 8 the last few weeks. While four months isn't really 'long' it's the longest improvement I've had by far and I seem to be continuing to improve, so I am cautiously hopeful. Fingers crossed. Knock on wood.

My current protocol (this almost exactly what I've been doing for about the last 6 months, and some of it for at least 8, parts longer):

• LDN .5mg (I tried a larger dose but it made me depressed, groggy and sleepy)
• Glutamine 2g (two separate times I've started this at 2g and both times had a noticeable improvement in mental functioning. The first time I thought, "if 2 is good, 4 or 6 must be better!" and I lost the benefit. So this time I'm staying at 2.)
• Baclofen 10-20mg (helped with muscle cramping/pain and I believe improved deep sleep, especially at the 20mg dosage)
• Lysine 3g (1g wasn't noticeable, 3g a day was)

(These first four have had the most noticeable effect for me.)

• Ambien 5mg
• Aleve twice a day (reduces inflammation)
• Salt tablets (6 thermotabs)
• Serine 600mg
• Magnesium
• Potassium 600mg
• Mb12 1mg sublingual
• Zinc 25mg
• Milk thistle
• Vit. C
• B-complex (very basic, no folic or folinic acid)
• Massage
• Acupuncture - I don't know much about this but there seemed to be some correlation between gradual improvement and when she started treating me for "dampness" (whatever that means

 

[Freddd]

My Symptoms:
Here are some of the symptoms I had in no particular order (or maybe what bothered me most):
1) Non-restorative sleep. I would sleep and sleep and sleep yet never feel rested. This was not only a physical tiredness but a mental and emotional tiredness.
2) Fatigue and post-exertion malaise. I was beyond exhausted. Everything was an effort. I did not bounce back after any kind of physical activity. I couldn't even mow my own lawn. I did only what I had to do like pay bills and work.
3) Insomnia. It was terrible. I was dead tired and could not fall asleep and, when I did fall asleep, it was hard staying asleep. The slightest noise would wake me up.
4) Pain (FM). I hurt all over all the time. Eventually this started to steal the joy from every moment. It felt like my muscles would clench uncontrollably especially when I would sleep. I got a mouth guard because I was grinding my teeth. I had to get both a top and bottom piece because I was slowly wearing through the top guard. It was pricey, $300, but better than fixing cracked teeth.
5) Brain fog. It was hard to think. I felt drunk most of the time. I wasn't able to read or learn anything new.
6) Static in the brain. This is very hard to describe. The only analogy I have been able to come up with is it's like listening to an AM radio station with lots of static. My brain was working but there was lots of interference. To this day I still have trouble listening to music. It just doesn't sound right.
7) Sensitivity to noises. The tiniest noise would bother me. My neighbor had dogs that would bark all day and it drove me insane.
8) Sensitivity to smells. Certain scents, especially perfumes and the like, made me feel dizzy and sick.
9) Sensitivity to touch. I didn't like being touched. I had to stop wearing jewelry (e.g. watch, ring, necklace).
10) My vision started going black-and-white-ish. I saw colors but they looked dull.
11) Intolerance to cold. I was always freezing even when I was in bed with the covers piled high and sweating. This is what helped me diagnose HT2
12) Irritable bowel syndrome (IBS). That's a euphemism for gas (both ends), bloating and loose, watery stool. Worse, I always had this pain in my gut. Eating would make it worse. Sometimes I would be starving but I wouldn't eat because it would hurt so bad. When I did eat, food would travel through me in 5-6 hours.
13) Memory problems. It was hard to remember things.
14) Irritability.
15) Anxiety.
16) Depression but, and I want to make this clear, it was a symptom not the source problem.

Hi Lordugh,

I had all of these but not black and white vision, just very blurry vision, and am healed now. It can all be cleared up in a year or so if you don't let it keep going on and get entrenched.
http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics

 

[rydra_wong]

Freddd, you didn't actually SAY, but we also know you could not walk for awhile there and now you can...the most important improvement!

I was interested to see #10 that you couldn't see colors - I experienced that often when I was anemic. No one else would believe me.

Rydra

 

[Freddd]

Freddd, you didn't actually SAY, but we also know you could not walk for awhile there and now you can...the most important improvement!

I was interested to see #10 that you couldn't see colors - I experienced that often when I was anemic. No one else would believe me.

Rydra

Hi Rydra,

I was interested to see #10 that you couldn't see colors -

I don't know where you got that. Quoteing lordugh, but not the b&w thing. The vision impairment I hds was not being able to focus my eyes. I couldn't taste thongs well and many flavors disappeared entirely. I could see blurry colors, very blurry.

I had various impairments to walking at various times. The morning I woke up crashed and for some months after I couldn't balance, even on 2 feet, severe vertigo and lack of foot control. I crawled to the bathroom. At other times I could not feel my legs or know where they were and had foot drop and tripped over my own toes and my knees would suddenly go limp dropping me to the ground. At times I was much closer to a wheelchair than I had ever wanted. When I was able to stand and not fall right over I could barely make it 50 feet.

A couple of years ago I redid a roof of a two story house. I can walk miles and miles, up and down hills and all that. I much prefer that.

 

[LisaGoddard]

hi Ember,
When I woke up Sunday morning I remembered that in the very early days I had taken colostrum along with the lactoferrin. I very soon found, however, that the lactoferrin on its own was sufficient for the benefit. I also tried to remember what I felt like on the first two weeks on lactoferrin before I felt any benefit - ie whether I had any herx symptons but couldn't recall. My expectations were so low that I didn't really take any notice. Anyway thinking of you.
Lisa

 

[Ember]

Anyway thinking of you.

Thanks for your thoughts, Lisa!

I spoke with a pharmacist on the weekend who was of the opinion that the lactoferrin I'm using (AOR Classics Series) has insufficient quality control. (She doesn't sell lactoferrin herself.) Looking up gutdoctor.co.uk, I notice that they recommend taking Immunecare Lactoferrin capsules on an empty stomach with a large glass of tepid water. AOR, on the other hand, recommends taking it with meals. So I've started taking it on an empty stomach now. Perhaps I'll alternate!

It sounds as though you didn't take the colostrum for long. At the end of a week, I haven't noticed any results yet. Early days though...

 

[Vegas]

-If you did improve from a very low level to a much better level of functionality, what did you do to get there, or did it just happen on its own?

Methylation supplements + frequent dose oral chelation, esp. the latter. the B12 & folates helped counter some of the effects of mercury, but the chelation is resolving the root problem.

-What level where you at at the lowest and highest?
2 currently 7-8

-How long did improvement take?
16 months

-What were your primary symptoms when at low levels?
severe fatigue, brain fog, muscle weakness, reactive hypoglycemia, body aches, post-exertional malaise, and about 50 or so more symptoms.

-Did you have coexisting conditions that made recovery harder or more complicated?
no just the typical dysbiosis & some stubborn localized infections. Of course I've never been one to pursue diagnostic evals, so surely there was more to the equation.



0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10- fully recovered[/QUOTE]

 

[globalpilot]

These symptoms sound very much like mine and yet a trial of thyroid hormone (both t3 and thyroid itself on separate occasions) made me feel very hyperthyroid.

You mentioned basal body temperature. What range were you measuring in ? I am at about 97.6-98 using an ear thermometer.

My Symptoms:
Here are some of the symptoms I had in no particular order (or maybe what bothered me most):
1) Non-restorative sleep. I would sleep and sleep and sleep yet never feel rested. This was not only a physical tiredness but a mental and emotional tiredness.
2) Fatigue and post-exertion malaise. I was beyond exhausted. Everything was an effort. I did not bounce back after any kind of physical activity. I couldn't even mow my own lawn. I did only what I had to do like pay bills and work.
3) Insomnia. It was terrible. I was dead tired and could not fall asleep and, when I did fall asleep, it was hard staying asleep. The slightest noise would wake me up.
4) Pain (FM). I hurt all over all the time. Eventually this started to steal the joy from every moment. It felt like my muscles would clench uncontrollably especially when I would sleep. I got a mouth guard because I was grinding my teeth. I had to get both a top and bottom piece because I was slowly wearing through the top guard. It was pricey, $300, but better than fixing cracked teeth.
5) Brain fog. It was hard to think. I felt drunk most of the time. I wasn't able to read or learn anything new.
6) Static in the brain. This is very hard to describe. The only analogy I have been able to come up with is it's like listening to an AM radio station with lots of static. My brain was working but there was lots of interference. To this day I still have trouble listening to music. It just doesn't sound right.
7) Sensitivity to noises. The tiniest noise would bother me. My neighbor had dogs that would bark all day and it drove me insane.
8) Sensitivity to smells. Certain scents, especially perfumes and the like, made me feel dizzy and sick.
9) Sensitivity to touch. I didn't like being touched. I had to stop wearing jewelry (e.g. watch, ring, necklace).
10) My vision started going black-and-white-ish. I saw colors but they looked dull.
11) Intolerance to cold. I was always freezing even when I was in bed with the covers piled high and sweating. This is what helped me diagnose HT2
12) Irritable bowel syndrome (IBS). That's a euphemism for gas (both ends), bloating and loose, watery stool. Worse, I always had this pain in my gut. Eating would make it worse. Sometimes I would be starving but I wouldn't eat because it would hurt so bad. When I did eat, food would travel through me in 5-6 hours.
13) Memory problems. It was hard to remember things.
14) Irritability.
15) Anxiety.
16) Depression but, and I want to make this clear, it was a symptom not the source problem.

 

[globalpilot]

Wonderful Vegas. Congratulations.

-If you did improve from a very low level to a much better level of functionality, what did you do to get there, or did it just happen on its own?

Methylation supplements + frequent dose oral chelation, esp. the latter. the B12 & folates helped counter some of the effects of mercury, but the chelation is resolving the root problem.

-What level where you at at the lowest and highest?
2 currently 7-8

-How long did improvement take?
16 months

-What were your primary symptoms when at low levels?
severe fatigue, brain fog, muscle weakness, reactive hypoglycemia, body aches, post-exertional malaise, and about 50 or so more symptoms.

-Did you have coexisting conditions that made recovery harder or more complicated?
no just the typical dysbiosis & some stubborn localized infections. Of course I've never been one to pursue diagnostic evals, so surely there was more to the equation.



0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10- fully recovered

[/QUOTE]

 

[Freddd]

These symptoms sound very much like mine and yet a trial of thyroid hormone (both t3 and thyroid itself on separate occasions) made me feel very hyperthyroid.

You mentioned basal body temperature. What range were you measuring in ? I am at about 97.6-98 using an ear thermometer.

HI GLobalpiolet,

Fortunately the active b12 protocol deals with all those symptoms except I'm not familiar with te BW vision thing. I couldn't focus my eyes though. Some people also say the mb12 and/or adb12 make thgem feel hyoer and ion that case it is usually the nervous system working better and ATP production raming up. A period of feeling hyper conpared to ultra fatigued appears inevitable on the way to normal.

 

[globalpilot]

It didn't touch my symptoms Freddd. However, my glutathione went back up to normal (low end mind you) on Rich's protocal. On methylB12 my SAM and SAH were very very high. They are back to normal now since stopping. My symptoms are more likely due to the enterovirus in my gut.

HI GLobalpiolet,

Fortunately the active b12 protocol deals with all those symptoms except I'm not familiar with te BW vision thing. I couldn't focus my eyes though. Some people also say the mb12 and/or adb12 make thgem feel hyoer and ion that case it is usually the nervous system working better and ATP production raming up. A period of feeling hyper conpared to ultra fatigued appears inevitable on the way to normal.

 

[LisaGoddard]

Hi Ember,
No news from you so guess it hasn't worked for you. If you are concerned about the quality of the lactoferrin, I can send you some of gutdoctor's which is good quality. i have some I haven't used and probably won't again. Of course, it would be no cost to you. let me know.
Lisa

 

[Ocean]

These symptoms sound very much like mine and yet a trial of thyroid hormone (both t3 and thyroid itself on separate occasions) made me feel very hyperthyroid.

You mentioned basal body temperature. What range were you measuring in ? I am at about 97.6-98 using an ear thermometer.

Wow, Vegas, what a huge improvement. What does the chelation involve? And was there any reason you chose to do it, testing etc?

 

[markmc20001]

Hi Charles,

I just found out yesterday that I also have bartonella. This is also transmitted by tick bites and there are lots of ticks which have bartonella but not Lyme, particularly in certain areas.

This causes CFS symptoms, a lot like Lyme disease but the neurologial effects are worse. The doc told me yesterday he thinks the total brain breakdown I had was bartonella, as Lyme is not as severe as that. He also said it is extremely common with bartonella to get very severe depression, become suicidal or paranoid, and some people even get schizophernia like symptoms.

Do you often feel very cold, even when other people are not cold at all? And do you have tiny red spots, that look like tiny blood blisters, on your torso or other parts of your body? Or marks that look like reddish stretch marks/scratches? These are also symptoms that some people with Bartonella can have. (I have never had these marks, not everyone gets them).

So it could be worth getting tested for that - I've been taking antibiotics for it for the last year and made great improvements.


Freddd,
Wow, 16 grammes is a lot!
I am taking 9 grammes a day. Richvank said when you take such high doses of C, it recycles glutathione for you so you can compensate for a glutathione deficiency. But if you don't go right up to bowel tolerance, then it is not good for you, and better to just stick with a low dose.

Muchas gracias! I'm going to look into bartonella.

 

[Vegas]

Wow, Vegas, what a huge improvement. What does the chelation involve? And was there any reason you chose to do it, testing etc?

Nothing complicated, you just remove any ongoing exposure, e.g. amalgam fillings, you wait a few days and then you start taking an oral supplement every 3 hours(depending on the chelating agent) around the clock for three days at a time or longer. The critical piece to the puzzle is to continue the doses very regularly to avoid fluctuating levels of the chelating agent. Acceptable chelating agents include DMPS (which is an RX med) DMSA (non-prescription), & Alpha Lipoic Acid (non-prescription and widely available.) The ALA cannot be safely used until three months after removal of the silver fillings or other acute exposures, like flu shots. You basically just set a bunch of alarms, and start taking the pills around the clock. It's neither complicated nor expensive, and is very safe if done properly. Of course I don't want to oversell it, it's pretty challenging at times.

I choose to have my fillings removed in part based on lots of clues, like a familial history of reactions to vaccines & suffering symptom exacerbation after having an amalgam filling placed. RVK's insistence that Hg is probably the best characterized explanation for subnormal glutathione also played a large part in my decision to get them replaced. It took me a while to come to this conclusion because it does sound so far-fetched, but after reading a couple hundred recent journal articles and text chapters on Hg toxicity, it became obvious that Hg theoretically could have and probably was at the root of my illness. It was a bit of a leap of faith, but I was right. Honestly, I'm still scratching my head in disbelief that I actually figured this out.

 

[globalpilot]

I'm interested in yoru comment that Rich says mercury is the best characterized explanation for subnormal glutathione. Ie haven't actually seen him see this. Do you by any chance remember where he said this ?
Congratulations. Your leap of faith sure paid off. I'm also chelating with DMPS, Andy Cutler style. I think everyone deserves a chance to try chelation b/c so many do benefit.

GP

Nothing complicated, you just remove any ongoing exposure, e.g. amalgam fillings, you wait a few days and then you start taking an oral supplement every 3 hours(depending on the chelating agent) around the clock for three days at a time or longer. The critical piece to the puzzle is to continue the doses very regularly to avoid fluctuating levels of the chelating agent. Acceptable chelating agents include DMPS (which is an RX med) DMSA (non-prescription), & Alpha Lipoic Acid (non-prescription and widely available.) The ALA cannot be safely used until three months after removal of the silver fillings or other acute exposures, like flu shots. You basically just set a bunch of alarms, and start taking the pills around the clock. It's neither complicated nor expensive, and is very safe if done properly. Of course I don't want to oversell it, it's pretty challenging at times.

I choose to have my fillings removed in part based on lots of clues, like a familial history of reactions to vaccines & suffering symptom exacerbation after having an amalgam filling placed. RVK's insistence that Hg is probably the best characterized explanation for subnormal glutathione also played a large part in my decision to get them replaced. It took me a while to come to this conclusion because it does sound so far-fetched, but after reading a couple hundred recent journal articles and text chapters on Hg toxicity, it became obvious that Hg theoretically could have and probably was at the root of my illness. It was a bit of a leap of faith, but I was right. Honestly, I'm still scratching my head in disbelief that I actually figured this out.

 

[Sallysblooms]

There are a LOT of people using ALA very safely. I have a couple of silver filling left. My level of mercury is nill. It is fantastic for so many reasons, not just for detox but for POTS and CFS since is is so good for so many things.

 

[Jenny]

There are a LOT of people using ALA very safely. I have a couple of silver filling left. My level of mercury is nill. It is fantastic for so many reasons, not just for detox but for POTS and CFS since is is so good for so many things.

How do you know your level of mercury is nil, Sally? I haven't yet come across any tests which have any evidence of reliability.

 

[Sallysblooms]

Nothing is ever perfect. Blood is the best I have heard of. Can't remember the exact name.