Discussion in 'Fibromyalgia Main Forum' started by bakeman, May 25, 2009.
she just stopped posting. its weirding me out.... anybody know anything?
I know! I've wondered about her as well...she got her disability approved and that's all I recall.
I have a friend who has her email and I will see if they still keep in touch.
Jam338 has been gone ever since we changed to this new board - I remember posting a thread looking for her back then, I'm worried about her too.
It's sad to see people drop off, we don't know if they are OK....
I am very grateful for all the posts that were on here about Lyme disease. I had never thought that it might be my problem. I am being tested for it soon and don't know what the results will be, but either way, I don't think you can have too much information when trying to rule out other conditions.
My new doctor brought up the test and I've been ill with this for 30 years. No one had ever mentioned it to me before. Thanks to the info on this board I feel that I may have this. I did suffer insect bites from being in the woods at the same time I came down with these CFS/FM symptoms. Also had a bullseye rash. Thanks to all who posted. GB66
I have corresponded with jam338 recently and I sent her the link to this thread. She said she will write something as soon as she is able to.
I don't know why she stopped posting in October. I do know that she is dealing with a very serious toxic mold problem in her house right now. You can imagine how stressful that is.
It's shocking to me how many people on this board have both Lyme disease and mold poisoning. You would think that would be a rare combination. But among people with CFS, it's surprisingly common.
A warm hug back to those who have kindly asked about me and those who may remember me. Slayadragon and Forebearance let me know about the inquiries about me and contacted me through private email. They have been helping me with my dire situation with a mold crisis. (a HUGE hug to them!!) I have relocated 4 times in the last 3 weeks and have been bedridden for the better part of 4 yrs. I am now displaced from my home, laying in a hotel bed with a laptop propped up on my legs writing to you. You can imagine the shape I am in now. Very bad.
First, I did not abandon y'all by choice. I couldn't navigate the changes in the format of the board right after my first major crash from the social security disability process (October/November). I was a mess for months and worsening still. Too much for my brain, but it is nice to see that ProHealth has made some corrections to make the format easier and similar to the old board. Too bad though about ruining the search feature. What a major loss for those researching to find answers. Hope ProHealth seriously does something. There is a lot of very valuable information shared for many years is now inaccessible to the cognitively challenged. You would think that ProHealth (of all people) would understand that. I hope it is a work in progress. If not, how sad.
It has been a long time since I posted on the board . I am auto-logged out now and can't remember my password so I can't post. Forebearance has kindly offered to bridge post on my behalf so I can at least say hi and let y'all know that I am ok. Well not really ok, but still here. Thank you for asking about and remembering me.
Yes, along with many others with FM/CFS I have lyme disease and toxic mold poisoning. I have MUCH to say and share about this in hopes that my journey helps others to sort out and find their pieces to this cursed umbrella illness known as FM/CFS. I have indeed learned that mold is likely the foundational cause of my illness. It could be for some of you as well. Since last posting on this board and prior to my crash I have continued with my research into the causes of my illness to find my pieces. As y'all know, I was relentlessly pursuing that while still here.
I had found many pieces of illness through the help of so many wonderful people on this board who helped me understand what I should test for and how to interpret test results. As all of you know, when we were first diagnosed with FM/CFS conventional doctors tell us all your labs are normal, you have FM/CFS, no cure, here are your meds. Some accept that and others like me feel there is more missing information and relentlessly pursue answers about it. The answers may well be different for us all.
I can only share what has happened in my own situation, and know that I am not alone. There are a few of us. Many of us on this board learned one of our pieces was Lyme Disease. Some of us have learned there is also a mold factor. A few of us have both lyme and mold. My doctors say those are the their sickest patients and the ones at greatest risk, especially if you have the mold susceptibility genetic factors which I do from not just one but from BOTH parents. Long term exposure to dangerous molds (not all are dangerous) can cause cancer in the brain, liver, kidneys...can cause permanent brain damage. That should jolt a few with substantial brainfog issues. Especially for those of us who have lowered natural killer cells. I have learned normal is 250-300. Mine is a 2. Not good. It is a matter of simple analysis to see where this going for me. But, it is not too late for you. Start testing now. Find out your factors so you can manage them before you get into serious trouble with just masking the symptoms like I did for over 15 yrs.
While conventional docs will run conventional labs and tell you all results are normal within range. Professionals working on the leading edge of this illness will tell you that if a doctor knows the correct tests to run those tests WILL reveal the mystery pieces in your illness.
For example Ritchie Shoemaker, M.D. says that 100% of CFS patients will test for MSH deficiency (anything below 35) MSH is cleaved by several disorders (lyme and mold included) and can manifest many (not all) of the symptoms most of us have. Most doctors don't know that. The test is done only through LabCorp and has to be done using the traysalol kit. Most LabCorp staff don't even know that and have to be guided on how to do it correctly. Garbage in/garbage out. James Schaller M.D., writes in his book about the significance of MSH to proper body functioning. The FDA has not yet approved a bioidentical for sale in the U.S. Only available in China and Australia thusfar. It will be the next HUGE hormone balancing that pharmaceuticals will race to patent, but could take years.
So, for those who are willing to do the homework and find the real pieces to your illness, here is a link to an article on ProHealth Library with more info on MSH deficiency, but it is several years old. Not sure if it is consistent with Dr. Schaller's and Dr. Shoemaker's books, but is a place to start learning:
I am still finding the pieces. Just received more LabCorp tests back 2 days ago showing the dual parent genetic factors (thank you to Forebearance and Slayadragon for helping me decode the genetic codes!) Also shows my C4a is over 9800. Anything over 2800 is considered high. My IL-8 was 4,184 and the reference range should be less than 14. So, my body is bugling (screaming) loudly that something is badly wrong with it. The abnormal tests are there if a doctor would only know what tests to do. You have to guide your doctors to what tests to do. Don't give up. Find out about the testing and keep going to different doctors...find one who will help you do the right tests. Your life depends on.
Since last talking with y'all I have done lots of testing....all abnormal results. Imagine that after 15 years of "all labs normal". A lot of my life has been robbed away while I lay in bed year after year getting worse and becoming more and more isolated from life and family. People move on. People will grieve your illness with you for so long, but then like in death, they move on. That is how life works. Thank God for boards like this where we can learn and pursue the causes of our illness. And for those content with the FM umbrella title it is a place to find support. One size does not fit all. Just sharing what fit me in hopes it helps anyone. If just one person is helped to get the right tests done and find answers that is huge to that one person.
I don't even know if I have all the pieces yet, but I have a few of mine. The mold piece is huge. Mold undermines the entire immune system and THAT is what allows all these other antibodies (designed to protect us from illness!) to activate in the actual disease!! That is how lyme reactivated in....also EBV, CMV, HHV6....all of it caused by mold cleaving my immune system.
I am now convinced that the viral factors are huge symptom of the disease but not likely the cause, not for me anyway.
Since the 70s/80s environmental laws have forced builders to build more airtight houses for energy conservation, a good thing. But, here is where the problem is. Airtight houses can't breathe properly and that allows mold to become a problem. Dr. Schaller and Dr. Shoemaker say it is a HUGE problem in schools...old buildings, flat roofs and windows that leak water and create mold. Dr Scaller, a child pyschiatrist in Florida, first saw it in his own children and then in other children who were brought to him with learning disorders. Through testing he learned some of them have MSH deficiency which can cause ADD ADHD and learning disorders among many other things. Incredible huh? Schools are always cash strapped and structural maintenenance repairs is the last place money gets allocated. Makes sense huh?
Anyway, hope this information helps someone even if it is only to get one child properly diagnosed about their learning disorder. Get Dr. Schaller's book(s).
The future for me is not good. I have severe liver and kidney pain that need to be ultrasounded. Putting it off because I don't think my husband can take it. He is already in therapy over all this now. We had years of unrepaired water damage areas after living in our house for over 20 years. For most, mold will make you very sick, but for those us with genetic risks (especially both parents) it can be deadly.
Molds are everywhere in the environment. It is nature's design for the earth to recycle herself. Mold is usually not a problem until it is indoors and trapped in confined areas where water or high humidity feeds it to flourish and grow inside your walls. You don't always see it. It can't be seen at all in my house so we were clueless. It is BEHIND the walls and floors. Getting our house inspected revealed it. We fortunately contacted the right company (many shysters, so be ware!). The President of the company himself had mold sickness. When he learned of my situation he came to the hotel and visited with me in bed and told me he understood and wanted me to know that our house was a personal project to him. I prayed for a miracle and God sent me him. Huge hug to God and this wonderful man. He is coming to see me again on Tuesday and hoping to find the books he read to bring me that helped him. If you have a moment I'd appreciate a small tiny prayer for our situation here, thank you.
My journey gets even more strange. After I was first told I had lyme and was too sick to treat, I still went looking for answers as to WHY I was too sick to treat. How can a person become too sick treat?? So, I asked my doctor if ever heard of medical intuitives and if he knew of anyone. I figured he would roll his eyes or scorn over it. He didn't. He sees how sick I am. He quietly told me he knew someone and gave me her name and phone number. Google wisdomword and you will find her. She does NOT consider or promote herself to be a medical intuitive. In fact she is a bit offended by the word I think. She is a clarivoyoant spiritual teacher. During my consult ($150) the first half hour I thought oh great and I paid $150 for this. It was a healing blessing ceremony to start with. Then, she went inside and I started asking her specific questions about my body. I had all questions prepared. If I hadn't have I don't think I would have got the same results. I was determined to get my $150 worth She kept telling me "I see mold around you....it feels strong".....she would go on to other things....and come back to mold...over and over again.....She never told me "you have mold poisoning".....she just kept repeating the cycle of issues with mold. When done, she said I think mold could be primary somewhere in your illness you need to get tested and get your house thoroughly inspected. That was around Dec/Jan. I went back to the same doctor and said what she said and he said he knew. Said she had called him with concerns. So, the testing journey for mold began and here I am.
My husband is now taking me for weekly IVs and doctors are doing many tests (about 50 blood labs) to establish baselines on many different areas. Then, they will develop a special compounding detox IV formula that I will have done 1-2 weekly if I can tolerate it. It will be a process of leaching mold toxins out of my system and will likely make me much worse before I ever get better.
Ok, thanks again to Forebearance for posting this for me. I have substantially overstmulated my brain in writing it so I have to rest. Since the last move I have been having little mini seizure contraction feelings in my brain and now have a neurologically induces speech stutter. Trying to calm my brain down again. Hugs to all.
My gosh, jam, you've been through so much!
One good thing I can think of is that you do not have a Lyme-susceptible genotype, so if you can get better from the mold it should be easier for you to defeat the Lyme infection.
Wow, what an extraordinary post by Jam338. Forbearance, I was wondering if Jam338 is aware that she can browse the posts here without having to log in like on the old board? Also, thanks for helping her post a message here for us all.
Jam338, if you're able to read this. Thank you so much for making the effort to fill us in on what you're going through and what you're learning. Sounds like you've really had a rough go of it. But am so happy to hear from you. I've missed your friendly and helpful posts. I anticipate going over your most recent post here quite throughly, as I seem to have most of the issues you do.
I too have gotten a Lyme diagnosis. And just a couple weeks ago I went to see a Neurolink practitioner who said I have major mold issues as well. Apparently I'm a 10 on a scale of 1-10. I've also wondered whether I sometimes deal with some sort of mini-seizure activity. I don't have any type of stutter, but talking is usually quite difficult for me. Sometimes I almost feel I will die if I'm forced to say another word.
Thanks again for your efforts to connect here with us. Many blessings to you dear friend.
It's wonderful to hear from you - I've missed you so much!! You certainly don't seem cognitively challenged in your posts - you still express yourself so well.
I admittedly don't know anything about mold poisoning - but I am actually excited for you that they found something that they can work on. I'm sure it's not easy to bare and my heart breaks for you for everything that you have been through. My hopes and prayers go out to you that this detox program can really make a difference. I am also saying prayers for your husband - I know our illnesses our heavy burdens for our support people as well.
Jam - have you felt any difference after moving out of your house? It may be too early to tell anything? It sounds like you are reallly getting the help you need now - it's amazing how you found out about the mold - isn't life full of surprises?
I am so happy to hear that you are still doing OK, you are so brave and strong!!
Please don't be a stranger, I would love to know how the detox works. I wonder if Prohealth can re-set your password and send it to your email or something like that??
Forbearance thanks so much for posting!!
Yes, jam338 has been reading this thread. She just can't post until she finds her password.
I am glad I could help her out during this stressful time.
Wow, that is sobering that you got the tip about major mold issues. And that you might have been having mini-seizures yourself.
I do think it's better to find out the truth, whatever it is.
[This Message was Edited on 06/07/2009]
Good Morning All,
Hi Jam, nice to hear that you're able to read the posts here. I was wondering if you've considered using far infrared (FIR) saunas to detoxify the mold. I've been drawn toward these types of saunas for the past 2-3 years, but never got around to getting one. With my Lyme and mold issues, it has now become a much higher priority. I anticipate getting one where you can lay down in a circular tube.
Anyway, I did a quick google search this morning on mold and FIR saunas, and came up with the following link. Thought I'd pass it along in case you would be interested.
I went to see Dr. Mary Short-Ray last fall, and she told me a few tips about using FIR saunas.
She said to start with five minutes. She said to drink lots of water before and after, and to take minerals afterwards. She said that FIR saunas, like most detoxing treatments, pull minerals out of the body as well as toxins.
She may have also said to take a shower afterwards. My memory is fuzzy about that.
She had a lovely Heavenly Heat sauna in her office, but I couldn't use it because her office had a big mold problem! Of all the luck!
Since she has mold poisoning herself, she couldn't stay there. She moved out of that office soon after I saw her.
Anyway, I tried a Heavenly Heat sauna at a health fair this spring, and I was in it for about a minute, and I was totally fried afterwards! Lots of detoxing symptoms.
Jam338 tells me that she has tried to post twice on this thread, and each time she clicks on "Submit" her post disappears and never gets posted.
Does anybody know what is going on???
She says she is using a slow dial-up internet connection.
Hi Forbearance, Hi Jam,
I suspect it's because this new board logs people out way to fast, I think within 20 minutes or so. The old board I believe was about 2 hours.
Anyway, I know Jam can do long posts (which I appreciate) which I'm guessing takes more than 20 minutes to compose. Whenever I do long posts, I usually do it in my word processor and then paste to the board. Sometimes when a post gets longer than I expected when composing here on the board, I will copy it first to a word processor so I can retrieve it in case it won't post.
I've been meaning to start a thread about this problem, because I've seen others have the same problem. So frustrating, especially since it's the longer threads we've invested a lot of time and energy in that we end up losing.
Hope this helps.
Best, Wayne[This Message was Edited on 06/09/2009]
I'm so glad you are feeling a little bit better. And I'm glad you have so many pieces of your personal puzzle now. Whew!
Man, your doctors are doing things I've never even heard of. They really have a lot of ideas.
I know what you mean -- I never thought mold was an issue for me, either. I thought, Sure, I can believe it's an issue for that Erik guy, but not for me! It wasn't until Slaya found out it was her issue that I got motivated to read the books you mention. After I read those books, I was shocked at how much it seemed to apply to me.
I wish you good and speedy healing.
I used to be "painpaingoaway"...good to hear from you. I continue to keep in touch w/ missizzy but lately it's touch and go as her health took a turn for the worse again (she'd gone into some sort of remission short of six months). They never did find any mold in her case.
I, however, turned up w/ toxic mold in my bathroom and other molds in my home last fall...of which it was removed (my bathroom was completely gutted, all things new from the floor joists up to the floors to the fixtures)...my dining room (roof leak) was also rebuilt. I did get a bit better but still continue to suffer and wonder what is going on inside me. I have always been allergic to molds anyway and was in this house for more than 4 years when we discovered the damage. I used to fall constantly and still do on occasion, here at home or out in public, have tremors (that started even before moving here but not this bad). I noticed another musty smell lately and my sprirts have sunk once again...
It boggles my mind to even look into any of this stuff...beyond my comprehension, budget, you name it...at times I feel like this is just the way it will be for me and other times I want to figure how to get out of this situation. I'm glad for your sake that you are getting treated and hope you continue to improve.
Sorry getting back to you this late...am worn out but will respond soon, and thank you so much for sharing all what you've been through! It will be worth it when your health improves! Ill have to read this a few more times...
Hi. So sorry to hear what you have been thru. I just found your post and was curious.....
In 2004 I worked in a modular building, and every morning when I arrived, I would start sneezing, runny nose, itchy eyes, just feeling uckey. The people I worked with would always say, darn girl, you must have allergies. Well one day, I heard some people saying there was mold in the building. Went to my dr. and she prescribed clarinex. Well I lost my job, due to missing work from feeling like crap (I worked in this building thru a temp service). Tried for unemployment, got it, then they took it away, stating something to the effect that I missed to much work, unnecessarily. I am still trying to pay back unemployment. This was all in 04. From then I was getting worse, body aches, like the darn flu. Dr. after Dr. appts., blood work, you name it. Well finally in feb. '09 I found a good rheumy, and she dx. FM. My mother mentioned the mold thing, so when I go back to rheumy in April I will ask her about it. I'm wondering if there is a way to prove that maybe the mold thing has something to do with triggering my FM (if so would love to not pay what is left for me to pay to unemployment)
P.S. My rheumy didn't think anything of the mold issue. What is your opinion?
Take care, and BIG HUGS your way,
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