Feeling generally better

[m1she11e]

Ive kind of debated if I should write this and what to call the thread. It covers several topics but I was hoping maybe some little morsel may help someone.

Ive been through a whole lot of ups and downs in the past 30 years that I have been sick. My illness started with mono. I had been able to work full time and raise two girls in that time but always felt I may drop to the ground at any minute. I spent nearly every second I wasnt working or tending to my children on the couch or in bed.

I believe I was able to mainly maintain a full time job due to a very healthy diet. (and random luck) I never really understood why some were bed bound and some were the walking dead like I was. I did
however find out about 4 years ago that environment was huge in my illness. I had moved into a beautiful new condo in the wetlands of Florida and it truly left me housebound. I couldnt sleep no matter what concoction of meds I tried. I could not nap. I was too tired to drive. Even making a simple meal was exhausting. I got extreme vertigo. My legs were so week I could not walk down stairs. I had pins and needles and numbness that I could feel travel through my body. The list of physical ailments at that time were endless and the depression that accompanied the symptoms was beyond description. Within weeks of moving out of that condo and back to Orlando Florida I began to feel myself slowly improve. I mention this because I believe mold from living in the wetlands and or new building toxins almost killed me. It took me from working full time and being some what functional to totally non functional. My daughter manages these condos and lives there. I tried to go visit her for the weekend recently. Sometimes you second guess yourself and I thought maybe getting so sick when I lived there was just a downward random twist in this roller coaster of an illness. By day two I could feel the horrendous symptoms begin to return and it was NOT my imagination. My belief after this experience is that one of the aspects of this illness is bodies inability to detoxify toxins of all kinds. I know this is being researched and Im not saying I came up with the theory, I am just saying I lived it.

I have been in Orlando and away from wetlands now for about 3 years. I have slowly been recovering but still far sicker than before I had the environmental issues. I started working part time and went from putting in 2 hrs here and there to 4 or 5 hours a day, 5 days a week. I can drive again. Climb stairs etc. I still was left very fatigued though and with horrible bouts of vertigo. I started a product called Protandim. It is multi level and I would never had taken it but the lady who sells it was such a believer she traded me facials for the product. By my second month on it my vertigo was gone. When I got vertigo it would last for a week to a month and I would also be beyond exhausted. Basically vertigo spells left me bedbound. I would also get painful swollen areas on the same spots on my spine. I would get slightly dizzy while on Protandim and almost feel a vertigo episode coming on but they never fully did. After several months on the Protandim (I really dont remember if it was 4 or 5) I doubted the product and went off of it. After two months of being off of the product I got a horrible episode of vertigo and was bedbound. I called the lady who sold it to me crying. I told her I hated spending the money on product and still doubted that it worked but could not deal with one more day of this horrible vertigo. She hung the product on my door that day. That has been my last episode of full on Vertigo since resuming the product. You could not pry my Protandim away. I cannot say it has helped me in any other way or why it helped with the vertigo. I just know I HATE vertigo and will not chance ever again being without the product.

I have been on anti virals for a few years now starting with Famvir at a very high dose and currently on Acyclovir at a very high dose. I have posted in many of the threads regarding anti-virals so I wont go on and on about it here. I do not know if they have helped me or not. I still take the Acyclovir and continue to stay on it just in case it is part of the combination that is helping me.

I treated with abx for Mycoplasma infections for about 2 years and I am not sure if they helped me or not. I am not longer on any antibiotics and have been off of them for about 4 months.

The last thing I did and the thing I think that has helped me the most hands down is oral Progesterone. I have used every Progesterone cream on the market in the past. Through this whole illness I have told doctors that I feel BETTER the day before my period. I cannot afford the hormone replacement specialists so I am telling regular docs about this and they just dont get it. My CFS symptoms all greatly subside the day before my period and increase ten fold the week after my period. About 2 months ago I asked my physician who has been treating me with anti virals if he would test my hormones. He said tests were not reliable and put me on a trial dose of progesterone from a compound pharmacy. I was not happy to find I had a pill that you swallow. I have done my research and was expecting a compounded cream. Within 3 days of taking oral Progesterone I was able to start working out. I started running with my daughter who was doing this very easy couch to 5k program. I have been able to do some weights over the years during better spells but NO CARDIO. I actually felt better after I ran. My tendons started hurting so I switched to a work out video I had been intrigued with on line. (Brazil butt lift of all things....) I have been doing that work out video at half hour once a day to twice a day for over 2 months now. I even do it before and sometimes after a work day!!! Never have I been able to maintain a work out program, especially cardio for that long. Working out now energizes me when it used to exhaust me. I believe that the lying around is a viscous cycle. I believe we are too tired and working out can do us more harm than good but with what ever has changed in my body, I can tell that working out is now good for me. I believe sweating is getting the toxins out and the exercise is moving my stagnant lymphatic system. It has become an upward spiral. I truly believe it is the Progesterone and it has to do with Estrogen dominance. Estrogen dominance affects so many things including the immune system. Unfortunately I do not have the money now for hormone testing to adjust my level of Progesterone to fine tune this as I would like to. This is my next step of course. I have never taken anything in my life that has helped me like oral Progesterone. It is not an energy boost like coffee. I actually take it before bed and I sleep like a baby. Im sure THAT is helping too. You would have to kill me (really) to get my Progesterone pills away.

At my last doctor visit I did not have a low grade fever and I have had one every day for the last 10 years. My resting heart rate is always around 120 (since getting sick 30 years ago) and it was just below 100. Those are physical markers that are measurable beyond symptoms.

The last thing I am doing is not eating Gluten. I have attempted this many times in the past with not much luck. When I started working out, I eliminated all pasta and bread. I didnt eat much of it anyways because I eat very healthy but I totally eliminated it. When I have any gluten now I notice a dive in my energy levels within days. I avoid it like poison now.

I am not well. I still am tired every single day but I am SO much better. I work about 30 hours a week. I still use the wrong words and forget the sentence I started but I some how manage. I still have a lot of my symptoms but they are at a mostly tolerable level. I have been sick for 30 years so in my world I am doing very good. I do not believe I have been cured or even close. I do however believe that the factors I have mentioned above have been huge in affecting my illness. I do not in any way believe I am going to crash and burn and that this is temporary. This is a slow steady improvement of strength and stamina. I may never get any improvement from here. I am still a long way from being healthy! I am SO much better though!! My hope is this LONG post may help some one in their attempt to put their puzzle of an illness together.

Because I still have to carefully choose what I do with my energy, I rarely spend time on this site anymore. I will try to come back and check this post from time to time though.

 

[Dreambirdie]

I'm glad you feel better. Good for you.

I've used progesterone for years (the bio-identical kind, both oral and cream), and though it did initially help me with sleep, that effect wore off over time. It never helped me with energy.

When I was tested to see what my hormones were up to, I imagined I would be estrogen dominant. (That was a popular diagnosis, promoted by John Lee's books back in the 90s.) As it turned out, I really needed some estrogen. I've used the compounded bio-identical kind for 2 years, but it hasn't made a big difference.

There are so many factors involved in this illness. Sometimes you hit upon the ones that move you in the direction of greater health and energy, and sometimes you have to keep on looking.

 

[SickOfSickness]

Does it matter what kind of progesterone pills? Any that are progesterone-only?

 

[AbbyDear]

i understand about the environment, most places effect me in ways i can not describe. i know some docs (very few) actually preach avoidance, and understand how detrimental repeat exposure can be... most others have no clue. they have no idea how powerful/harmful the immune response can be. i am glad you figured this out, and have found some relief.

 

[*GG*]

Glad to hear you are feeling better, hope your sharing helps someone.

GG

 

[Misfit Toy]

Does it matter what kind of progesterone pills? Any that are progesterone-only?

Women's Health Organization is a good way to go, otherwise compounded progesterone. A GYN who deals with bio identicals can help with this.

Oral progesterone makes me sicker than a dog, but the cream works better. I have a good cream I use.

 

[Misfit Toy]

I moved into an apartment a couple of years ago that used a toxic polyurethane on the floors the day before I moved in. I moved in and became sicker than a dog. I had no idea what it was but the smell was nauseating. My friend came to visit and had to leave because it gave her a migraine. After 3 months, vomiting, losing weight, panic attacks and feeling like I was going to die..I went and stayed with a friend. I moved a few weeks later. I had to detox with IV's and take hot baths and go on an antidepressant because the chemicals killed me. I would love to move, have a bigger apartment, but I have no real issue with the smell or mold. I know how sensitive I am and I can't tolerate any kind of toxin or mold. They can make you, as you said, housebound. Plus, moving is such a chafe.

I never realized how sensitive I was to paints, smells, etc until that happened. Like I said, I really thought I was dying and I was so messed up mentally, that I couldn't even figure it out until my friend had a migraine at my place and had to leave. It crushed my brain.

Hormones are another thing that makes me feel like I am going to die; I have a guess....I bet m1she11e, that you are allergic to your own hormones. If you feel better right before your period, that is because your hormones drop. So, when they drop...your allergy to them lessens. When they go up again, you feel like dog dirt. I am allergic to my own hormones and have the same problem. When my hormone levels decrease, I feel better...when they go up and it's the middle of the month, I am riddled in pain and mental anguish.

 

[m1she11e]

I just want to make it clear that i realize that all of the things I mentioned are in no way NEW news. Estrogen dominance has indeed been thrown around too much for many years. I read Dr. Lee's book many many years ago and that is when I tried all of the topical creams. I still think the right dose of topical would be my ideal choice when I can afford a hormone specialist. Unfortunately most of the real good ones that specialize in bio-identical are very expensive and are not covered by insurance. Adding progesterone was kind of another "try" and I didnt expect to see a big difference. I actually was telling my doc that I thought I was allergic to my own hormones like someone mentioned. He didnt believe I fit that scenerio. He gave me topical compounded estrogen to play around with as well. I realize hormones should probably not be played around with but i have researched and been my own doc for years so I was game. I got jittery energy with the very low dose of estrogen. Within days it turned to agitation and anxiety. I felt like I had hit a brick wall the first 2 days on the Progesterone and was going to quit that as well. Things just suddenly turned around. In again researching Estrogen dominance, I have read that at first the body can convert the Progesterone into the bad Estrogen. I also read that it has to be at a high enough dose or it converts some of it to bad Estrogen as well. It is very tricky and I am lucky to be getting results without working with a specialist. I do not believe I am allergic to all of my hormones anymore as I believe I would not be feeling better on Progesterone and worse on Estrogen. As soon as I can afford real testing I will be all over it!!

The progesterone I am taking is from a compounding pharmacy called Taylors. It simply says "natural progesterone" on the bottle. It is only Progesterone and I assume from a natural source. I am only taking 50mg at night which is a very low dose.

With all of that said, I do believe that this combination has lifted my health up a level, That is why I call it my pieces to my puzzle. I just thought maybe someone else may need some of the same pieces??? Maybe the anti virals lifted me to a level that I did not realize, the Protandim (I do not sell this) was a factor and the Progesterone was then able to work?? I did saliva test all of my hormones about 15 years ago. I had almost no Progesterone and was put on a compounded trouche. (I may have spelled that wrong. It was a gummy that melted in my mouth) I also was on topical testosterone and Cortef. I never felt better on that combination and at the time I thought I had found the holy grail of wellness. For whatever reason, just the Progesterone has really turned me around.

Again, I believe it was a combination of all of these things. I will say that I believe that if I were in the toxic environment still that none of this would be working. I couldnt process any supplements at all at that time. I still cant handle the clothing store Hollister. They spray tons of perfume all over the clothes and you can smell the store in our mall from 5 stores down. I used to so fine with the store. I cant handle new paint either. I guess once you are exposed it can permanently or semi permanently mess you up for a long time.

 

[m1she11e]

I also feel it is necessary to breech the subject of exercise. At some levels of health it is not good and can make us far worse. For myself, vanity has kept me always "trying" to remain in shape. I have worked out with weights off and on my whole life. I cant say an hour at the gym would ever knock me out for days. I just would go for weeks where I could work out and then weeks or months that I could barely walk to the bathroom, let alone work out. This is the longest I have worked out DAILY without missing due to illness. We did however go on vacation recently and I was unable to work our due to convenience for a few days. I was still very active but never really got my heart rate up. I started feeling sluggish and just unwell. There are so many levels of fatigue that make it hard to explain. The very first day back to working out I had to "push through" and wondered if it was the wrong thing to do to my poor body. I felt kind of sick right after and had to lie down for about 20 minutes. I did regain my energy and had better energy for the rest of the day. I believe that not moving around becomes a downward cycle too. I know so many are afraid and I understand that. Daily work outs that get me sweating and my blood and lymph moving are vital to my energy now. I sometimes wonder if the less we move the less we can move and if pushing a bit at the right time is necessary.

When I started this cardio work out think a few months back I could only do about 8 minutes at a time. Of course I was not conditioned to do more on top of my illness. I almost threw up several times. I would have given up but I recovered each time. This is new to me because once I hit a wall for the day there is no recovery possible. That day is shot. After rest I started recovering. I need less recovery time as the work outs went on and could work out for longer stretches. I kept mentally preparing myself that this could all come crashing down on me. Mentally I felt so happy that I was working out. I was so scared to give it up. Even those closest to me were concerned that I would crash after a few weeks and be devastated.

I tread on this ground very lightly because I know exercise is not the cure and people think we lack the ability to push through. Believe me, I know when there is no pushing there. I also think we have been conditioned to be so afraid of it too though. In my case it is one of the factors that is really helping me NOW.

Please dont get angry at me for stating my experience as I know this is a touchy subject.

 

[jeffrez]

Environmental concerns, and especially mold, undoubtedly are huge for most of us. Unfortunately, because of the already existing fatigue, chemical sensitivity issues, financial considerations, it's one of the hardest for many to address.

I'm convinced also that exercise for sure would probably play a big part in any recovery, after years of inactivity for most of us. But the problem is getting to the point where the PEM is minimized and more cellular damage isn't being done by the activity. I know that even after a dozen or so very slow sit ups I'm half-crashed for a couple of days after that and don't want to even consider doing it again for weeks or even months. As someone who really was an exercise fanatic before getting CFS, it's maybe one of the most frustrating things about this illness.

Really glad to hear you're doing better - glad to hear when *anyone* is doing better, gives some hope. Now that you know some of your key issues, you can keep working to refine those even more, and use them as a base to build from and hopefully get even stronger. Thx.

 

[m1she11e]

Environmental concerns, and especially mold, undoubtedly are huge for most of us. Unfortunately, because of the already existing fatigue, chemical sensitivity issues, financial considerations, it's one of the hardest for many to address.

I'm convinced also that exercise for sure would probably play a big part in any recovery, after years of inactivity for most of us. But the problem is getting to the point where the PEM is minimized and more cellular damage isn't being done by the activity. I know that even after a dozen or so very slow sit ups I'm half-crashed for a couple of days after that and don't want to even consider doing it again for weeks or even months. As someone who really was an exercise fanatic before getting CFS, it's maybe one of the most frustrating things about this illness.

Really glad to hear you're doing better - glad to hear when *anyone* is doing better, gives some hope. Now that you know some of your key issues, you can keep working to refine those even more, and use them as a base to build from and hopefully get even stronger. Thx.

Thank you!

I completely agree with you about the environmental issues and how financially most of us have been completely wiped out by this disease. How do you just move or spend thousands on remediation? I actually live in a moldy house now. It is my boyfriends and it is a very stressful situation all the way around. I cannot afford to move out of the house though. So now I am hoping to get enough energy to move out (hoping the new environment wont be even worse than this one...). I call myself bubble girl to my well friends. I wish it were not the case but it is my reality at this point. It would be nice to get to the root of the problem and fix our sensitivity or broken down detox systems but that is an expensive and unproven process in itself. Very sad!!!

I also agree with you on the exercise issue. I think it is a double edge sword. I know so many were athletic and not being able to work out or participate in sports is heart breaking. That is why I kept telling myself to try to be ready if it didnt last. I would love to play sports again but Im not there.

One of the things I also wanted people to know is that you can hit the lowest and low and rebound to some what functional. When I was lying there to sick to watch television and limited on how much computer time would make me sick I wondered if I would ever return to "normal sick." Many people told me not to get my hopes up and they crashed and never came out of it. I really thought it had finally happened to me. Losing all hope was an awful depressing time that I dont wish on anyone. Maybe the next thing you try whether it be a hormone or a move or even divine intervention will return you to at least a better level of health. You just never know.... (there are no rules with this illness, that is for certain.)

 

[OverTheHills]

M1che11e
Thank you so much for sharing the story of your improvement. It helps keep my spirits up. The message I take is that despite the difficulties we can manage our condition(s) and acheive significant increase in quality of life. It has taken me a lot of experimenting to find things that help and things that harm. Doubtless there is more to go for both of us.

OTH

 

[jeffrez]

Thank you!

I completely agree with you about the environmental issues and how financially most of us have been completely wiped out by this disease. How do you just move or spend thousands on remediation? I actually live in a moldy house now. It is my boyfriends and it is a very stressful situation all the way around. I cannot afford to move out of the house though. So now I am hoping to get enough energy to move out (hoping the new environment wont be even worse than this one...). I call myself bubble girl to my well friends. I wish it were not the case but it is my reality at this point. It would be nice to get to the root of the problem and fix our sensitivity or broken down detox systems but that is an expensive and unproven process in itself. Very sad!!!

I also agree with you on the exercise issue. I think it is a double edge sword. I know so many were athletic and not being able to work out or participate in sports is heart breaking. That is why I kept telling myself to try to be ready if it didnt last. I would love to play sports again but Im not there.

One of the things I also wanted people to know is that you can hit the lowest and low and rebound to some what functional. When I was lying there to sick to watch television and limited on how much computer time would make me sick I wondered if I would ever return to "normal sick." Many people told me not to get my hopes up and they crashed and never came out of it. I really thought it had finally happened to me. Losing all hope was an awful depressing time that I dont wish on anyone. Maybe the next thing you try whether it be a hormone or a move or even divine intervention will return you to at least a better level of health. You just never know.... (there are no rules with this illness, that is for certain.)

You are so right about that. I've rebounded from multiple crashes that I never thought I would ever get better from. I probably never recovered 100 percent from a few of them, but like you said, you have to have hope, because you never know what the next thing is going to be that might get you back on track. You just can't give up looking and trying things.

I've got mold here, definitely, but just don't know the extent to which it's contributing to the fatigue. This summer I plan to get a screen tent and try sleeping and living outside in my backyard as much as possible, see what that does. I'm thinking even a few days or a week could make a difference, at least enough to tell how much of an issue the indoor mold is. Then just take it from there.

 

[m1she11e]

M1che11e
Thank you so much for sharing the story of your improvement. It helps keep my spirits up. The message I take is that despite the difficulties we can manage our condition(s) and acheive significant increase in quality of life. It has taken me a lot of experimenting to find things that help and things that harm. Doubtless there is more to go for both of us.

OTH

Thanks OTH,
That is indeed the message I am trying to send.

 

[m1she11e]

I caught a cold!

it has been many years since I have caught a cold even though I have a very low white blood cell count. If I was exposed to someone sick I would start to get sick weeks after initial exposure and long after I thought I was "safe." When I did start to seem to get sick it would be a very slight sore throat and very slight typical cold symptoms when they first start. My regular CFS symptoms would become absolutely debilitating but I wouldnt ever actually get the full blow cold or flu symptoms. The slight cold symptoms would clear up after a few days but I would be set back with exaserbated CFS symptoms for about a month. I am terrified to be around sick people because of this. I have always said I would rather just get the full blown cold like everyone else and move past it.

I woke in the middle of the night a few days ago with a full blown cold. Ive been about as sick as a normal person with a basic viral cold. My normal CFS is not appearing to flare. ( A cold is a piece of cake compared to a CFS flare.) I have all the symptoms with a box of tissue beside me just like a normal sick person.

From what I have researched this is normal for alot of CFS people and not actually getting the cold is the immune system lacking the ability to launch an assault. Cold symptoms are due to the immune system attacking the virus as it is supposed to. Im not enjoying this but I think it is a good sign???

You know your sick when you are happy to catch a cold!!!

 

[Jarod]

Interesting posts M1shelle,

Glad to hear you are doing better. Thanks for taking the time to come back and share it with us sick people.

Couple of random comments on your treatment protocol.

I know you are talking about progesterone hormone; I would like comment on testosterone for a moment. It might help you or someone else. I'm a male and have tried various hormones. I wouldn't touch testosterone with a ten foot pole that wasn't produced by my own body.

I think the male body shuts down the testosterone production for a reason when men get CFS. That is why we men are prone to getting wimpy when getting CFS I would speculate. I would guess our bodies shut down the testosterone to stop stimulating a virus that gets aggitated by testoterone.

Dr Mikovitz used some form of androgens in her research. I believe she was using androgens to stimulate whatever virus she found so the virus could somehow and more easily detected. Point being; Careful with testosterone.... From your picture, doesn't look like you need any testosterone though.

Thanks for the tip on the supplement Protadnim. I will try it. Dr Martin Pall believes that the OH-NO cycle gives off peryoxynitrite (I think that is what it is called) His treatment approach is to scavenger the peryoxynitrite with various supplements. Methylfolate is supposed to work well for peryoxynitrite. That may be one of the reasons freddd's protocol works for some people. The methylfolate can scavenger the peroxynitrite.


Hope things continue to improve for you.

 

[jenbooks]

I remember us dialoguing on threads back then that it was your place--the way you described it. Don't know if those threads are still on this board. Glad you moved!

 

[m1she11e]

I remember us dialoguing on threads back then that it was your place--the way you described it. Don't know if those threads are still on this board. Glad you moved!

Yes, I do remember dialoguing with you "back then." I appreciated your input! That place almost killed me. I believe it eventually would have. If I hadnt lived it I wouldnt have believed that your environment could be THAT toxic. It wasnt some old run down building either. Brand new beautiful condo in the wetlands. Disastrous combination for my body though!!! Im sure if I could regulate my environment even further now my health would improve to an even greater level. Just not possible financially.

 

[m1she11e]

Interesting posts M1shelle,

Glad to hear you are doing better. Thanks for taking the time to come back and share it with us sick people.

Couple of random comments on your treatment protocol.

I know you are talking about progesterone hormone; I would like comment on testosterone for a moment. It might help you or someone else. I'm a male and have tried various hormones. I wouldn't touch testosterone with a ten foot pole that wasn't produced by my own body.

I think the male body shuts down the testosterone production for a reason when men get CFS. That is why we men are prone to getting wimpy when getting CFS I would speculate. I would guess our bodies shut down the testosterone to stop stimulating a virus that gets aggitated by testoterone.

Dr Mikovitz used some form of androgens in her research. I believe she was using androgens to stimulate whatever virus she found so the virus could somehow and more easily detected. Point being; Careful with testosterone.... From your picture, doesn't look like you need any testosterone though.

Thanks for the tip on the supplement Protadnim. I will try it. Dr Martin Pall believes that the OH-NO cycle gives off peryoxynitrite (I think that is what it is called) His treatment approach is to scavenger the peryoxynitrite with various supplements. Methylfolate is supposed to work well for peryoxynitrite. That may be one of the reasons freddd's protocol works for some people. The methylfolate can scavenger the peroxynitrite.


Hope things continue to improve for you.

Thank

Thanks, but I am still a "sick people," just not as sick as I was.

I guess we are all so different. I know many have gotten really good results with Testosterone and of course some not so much. My point is that hormone imbalance can play a much bigger role than a lot of people realize. I didnt think Progesterone would EVER help me to this degree. On the other hand I could never tolerate Cortef for adrenal fatigue.

Protandim is very different from the whole Meth protocol supplements. It does however increase Glutathione by supposedly 400%. I have tried many different ways to increase Glutathione over the years with no success. This Protandim really seems to be helping me though.

 

[heapsreal]

sometimes hormones can also back fill others lower down the chain. progesterone can help prop up cortisol even when someone feels crap when taking HC but this way the body controls how much is used for cortisol, prog can also convert to other sex hormones like testosterone. have u tried pregnenolone as it is more likely to convert to prog as well as other hormones.
are u sleeping better on the prog? i have heard it can help alot with this for some?
glad u have found something that helps?