posted
I just hopped over to immunesupport.com and there was question about "fog" associated with fibro. I couldn't view the thread because I didn't register.
Do people with fibro also get a "fog" in the same sense that we lymies do?
Just curious.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
yeah, it seems as though there's a lot of cross over but in pure fibro (if it exists) is there a fog? I can't imagine that there is, this fog thing that we lymies get seems fairly unique.
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
Fibromyalgia Snydrome, is just that a syndrome= "a collection of signs and symptoms of UNKNOWN origin".
So I'd suppose one's fibro could include brain fog.
They told me FS, and CFS when they didn't know I had lyme. It was not a label that helped me feel better, but maybe it helped the Dr's sleep better at night thinking they had found something!
Posts: 663 | From NH USA | Registered: Sep 2004
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quote:Originally posted by EyeBob: yeah, it seems as though there's a lot of cross over but in pure fibro (if it exists) is there a fog?
I agree that if they do have brain fog, then they probably have LYME instead.
I was misdxd with FM 27 yrs ago. Brain fog WAS NOT a part of the symptoms list for FM back then. They have been adding and adding and adding symptoms to the list for the past 27 yrs.
Fibromyalgia means you have muscle and joint pain....so the only brain fog that would be associated with it would be from the pain, in my opinion.
And I don't think it would be the same fog we have because we actually have spirochetes messing with our brains!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96109 | From Texas | Registered: Feb 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I have seen some of the literature on fibromyalgia refer to "fibro fog." The jury is still out on whether all fibromyalgia is Lyme, but judging by how many people seem to be diagnosed with fibro, but then get better on antibiotics, it is safe to say that at least some of fibro is Lyme or is caused by Lyme.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
It is my understanding they are starting to treat fibro w/abx. Go figure.
Fibro is lyme as said before. I do hair and talk to alot of people with "Fibromyalgia". Spend a little time talking in circles and you'll agree there is a fog.
Also, keep in mind, not all lymies have brain fog. Some manage to stay clear and are just not as neuro as others. Based on that, I'd say some people w/fibro may not be foggy but they still have lyme!
Posts: 982 | From Florida | Registered: Feb 2002
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I ran a Fibro support group for 10 years, and was confused by what I saw as two distinct illnesses in my group members, one far more serious and progressive than the other.
I have now come to believe that what I was seeing was Fibro w/o Lyme (about 1/4 of members), and Fibro w/Lyme (3/4 of members). I could be wrong of course.
I have one friend with severe Lyme who has very little fog. I agree it is rare, but it happens.
I have also seen two people with the Fibro dx and severe fog turn out to have severe hypothryoid, and when it was treated, the fog disappeared.
Klutzo
Posts: 1268 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I was diagnosed (misdiagnosed?) with Fibromyalgia a little over 6 mos ago.
One of my worst symptoms, even more so than the pain and fatigue, is "brain fog".
The thing that truly made me question the "pure Fibro" diagnosis is that no one could tell me anything about the problems that I was having with my eyes (floaters, itching, pain, etc).
Then my 13 yr old son was bitten by a tick and after taking him to ER to have it removed, I started researching Lyme on internet.
What I read truly astounded me... I now believe that my Fibro isn't just Fibro anymore... I KNOW it is Lyme..
So, I could not tell you either way... I, myself, tend to believe that most Fibro. is indeed Lyme...
Posts: 50 | From Port Crane, NY | Registered: Apr 2007
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posted
I was on that board a lot until I was diagnosed with lyme. I found out very quickly that many don't want any other diagnosis but are satisfied to finally have a Fibromyalgia diagnoses (instead of hearing from doctors - its all in your head).
Not me, I knew there had to be more wrong than telling me I had Chronic Fatigue Syndrome or Fibromyalgia syndrome. The same thing happened years and years ago when I kept having horrible stomach issues - after two scopes and finding nothing, they called it gastritis. What the heck does that mean? Now I know it was Candida yeast.
I did have one friend who didn't have lyme but had a lot of lyme symptoms who was a regular on that board. She had Micoplasma virus and got well within a year of treatment and another had high EBV titers.
Maybe viruses can cause some of the same symptoms as lyme.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have a new friend who has been helping out. She is dx with fibro. She calls it fibro fog.
I call mine lyme brain fog.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I've been part of an on-line fibromyalgia support group for 7 years. Fibro fog is common with fibromyalgia. In my opinion, many have lyme or some other infection based on the symptoms.
I agree with karatelady - there is a resistance in many to considering lyme, especially when your doctor is adamant that lyme is not possible.
There are also a number of fibromites who have had lyme, still have symptoms and are told by their doctor that it is post lyme and they will have to learn to live with it.
Very upsetting to say the least. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by Nimzovich76: Also Lyme have been associated as a strong trigger for this autoimmune condition or a very similar condition called by many post lyme syndrome.
I don't believe there is any such thing as post lyme syndrome. Not even sure I believe in autoimmune.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96109 | From Texas | Registered: Feb 2001
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posted
I was first dx with burcitous (sp!) at 28, then fibro at 32, chronic- severe depression and anxiety disorder at 34, and finally CFS at 40. The brain fog didn't set in until 38/39. Then after a second opinion, w/ an LLMD 3 mos. after the CFS dx, I was dx as Chronic Lyme w/ a Babs co-infection.
So....my LLMD thinks I've probably had it at least 12 yrs. I've been on my protocol for about two months now. Today he yanked me off my Zith (stay on Mepron and Plaquenil) for the next three weeks because I've been losing weight too fast, more than a pound a day. He wants to do some blood work to see what is going on.
I know... T.M.I., but I just wanted to show how wacked out things can get.
I used to think that medical science was pretty exacting...I wish I had been right!
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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bettyg
Unregistered
posted
yes, i agree with all you've said above folks.
i called it fibro fog too until i got my correct diagnosis after 34 years! yep, they/fibro/CFS do NOT even want to think/KNOW they actually have chronic lyme too. they are satisfied w/their diagnosis and can live with the terminology.
curley, do you have a bulletin board up at your shop, etc. about lyme symptoms, LDA brochures, etc? what an excellent place to have an ON-GOING EDUCATIONAL BOARD for all those you happen to be talking with fibro/cfs!
my personal NON-MEDICAL opinion is the longer we have lyme/years/decades the MORE NEURO LYME is showing up on us. the earlier bites don't go and effect our brains as the advanced decades lyme does.
good question eyebob! are you a DO or optometrist or another SPECIALTY eye dr? I have someone, a member in mind if you are SPECIALTY eye md! thanks for answering my nosey
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posted
My fibromyalgia turned out to be Lyme. I now need to keep saying that to people, since there appears to be some resistance to hearing that's what some people's fibro can be.
I guess the big question for me now is: is all fibromyalgia Lyme disease or not? Some fibro folks have said they think it's genetic, but who's to say they didn't get Lyme transplacentally?
I agree with Betty -- I think I have more foggy mind symptoms now than I did earlier -- ie, longer time for the ketes to mess around.
Posts: 13102 | From San Francisco | Registered: May 2006
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posted
Go to the Newbies links section here and scroll down to Movies. The first movie link features a 5 minute talk by Dr. Whitaker, who says that in her opinion fibromyalgia is just another word for Lyme disease.
Posts: 75 | Registered: Aug 2005
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posted
The sad thing is, many with MS will get a lyme test ordered by their doctor. Of course it comes back negative because its an Elisa instead of a Western Blot. If they never do any research on their own, they will be stuck with their diagnosis.
I know a lady where I get my hair done who has MS. I've given her so many articles on lyme and MS. All she says is that she has already been tested for lyme and is negative. I've shown her articles from Lymenet on the different lab tests yet she doesn't seem interested.
Oh well, that's all we can do is try to educate people. You can lead a horse to water..........
quote:Originally posted by tracybillings: LYME = FIBROMYALGIA
I agree.
But there is one thing I've been thinking about. I see - all the time - patients with fibro and MS say that they benefit from the use of medical marijuana. I'm not saying that it has a positive effect, but IF if has a positive effects, wouldn't it have a postive effect on Lyme too??
quote:Originally posted by Robin123: Some fibro folks have said they think it's genetic, but who's to say they didn't get Lyme transplacentally?
I've heard that argument too and I agree with you, Robin! I think drs are purposely lying to patients about Fibromyalgia so they won't find out it's really LYME, or some other coinfection.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96109 | From Texas | Registered: Feb 2001
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posted
Cannabis does not only change the mood. But has an immune effect too: promoting the Th2 response (while inhibiting the Th1 response).
IF the fibro's feel that it helps. Maybe it is from the immunemodulating effects from it ... and not just a placebo
Posts: 275 | From Home | Registered: May 2007
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posted
I was diagnosed with chronic Lyme 4 1/2 years ago by Dr. J in NC. I accepted the diagnosis as I was extremely ill. I believe a epidural with cortisol set off a Lyme reaction. I believe I was bittin in 1982. Remember the rash and had encephilitis(sp?) A few months before this "flu-like" illnes began I gained 50 pounds over the course of two months. It wasn't fat, it was like my body was inflamed. I went through one year on PICC Line and thought I was going to die, literally. I was suicidal and unable to care for myself. My life was much worse that it was prior to treatment. After the Picc lline, I was on oral meds. Believe me, I had all the protocol that is outlined by Dr. B who just retired. After three years on abx, Dr. J agreed with me that I was toxic and took me off all abx. I felt better, however, I had severe yeast of the gut. I did become better and to tell you the truth, the only Lyme symptom that was better after abx, was the neuralgia in my right leg and the numbness in my face. My cognitive problems were still there, my exhaustion still there, ringing in the ears, months in bed, no outside activities, post exertional exhaustion, no ability to lose weight regardless of the fact that I ate no sugar, yeast, starches, and truly limited myself to extremely good foods. I have no appetite, so I had no problem with this. Well, After 4 1/2 years of trying to get better through this LLMD (whom I now think is a quack regardless of what others say), I decided I had to search for answers to each of these problems separately. I went to a round of doctors. My only problem through blood tests was my thyroid, which was slightly abnormal. My LLMD's nurse started me on Armore and I've been taking it with no change in my numbers. AFter going to a neurologist, gynocologist, third opinion with another Infection Disease doctor, a psychopharmocologist (who helped me the most), I became even more frustrated and sick of being sick. I want my life back! Just like the rest of you. My LLMD nurse said that she believes that some of my problems seem to be hormonal. A saliva test came back with no progestrone, however, the saliva test does not match the blood test. So, I went back to my internest with this problem of not getting better. He spoke to me and my husband for about 1 hour going over all of my history, especially over the past 6 months. After a while he said, you know, it sounds like you have a rheumothoid factor going on here - my factor was high - and he said, "has anyone ever told you about Fybromyalgia?" I was really turned off and ready to tell him I've heard that from every conventional doctor over the past several years. Well, he told me alot more about Fibromyalgia than I have seen on these posts. Many of the symptoms are the same as Lyme. He believes that after being attacked by this tick and receiving the antibiotic treatment, Fibromyalgia and CFS are a lot of what's left. He pressed on my pressure points and I almost jumped through the ceiling. Now, don't be so quick to judge. I have had that same pressure point test with no reaction, but this was totally different. Plus, not all pressure points had pain. Another thng is that I know I have inflammation in my tissues, as my weight gain isn't so much FAT, but an overall thickness and heat eminating throughout my body. He is referring me to a specialist in rheumatology in Charlotee who is researching Fybromyalgia and not just handing out diagnosis. I will go see him when I get an appointment and hope that he can help me. My internist says this practice has a holistic approach or a mind body and soul approach to healing. Will I be well over night? No. However, if I follow this treatment plan, I believe I will feel better. I have wanted physical therapy for several years. I don't believe that anyone can be sedintary for almost 5 years and reduce the inflammation int he body. I also will be looking into the hormone levels and see if that also may be causing problems. My insomina will be addressed as well, and they are talking about starting me with Ambien. I am not saying that I didn't have Lyme Disease, however, I do believe that there are many aspects to it that need to be addressed by different doctors. My LLMD only addressed the abx. Actually, he was like a "pusher" or "snake oil salesman" that people call Dr. Steere. Perhaps Dr. Steere is partly correct in that there is a Rhemathoid effect after Lyme. There also must be more research and better testing for Lyme Disease and more help for those suffering with this horrible affliction. I'm not sure taking abx for the rest of your life or for years at a time can be good for anyone. It can ruin your gut and prevent you from recovering from other illnesses. I hope you all won't rant and rave at me. I've been through it all as you have. I've had Lyme on and off since 1982, and it hasn't been a hole bag of fun. However, I am ready to get better, and if it means treating it as Fybromyalgia, so be it. I don't care what they call it, I just want to feel better.
God bless all of you who are in pain and exhausted or bedridden. I hope that there will be light at the end of this tunnel and there will be more awareness of the dangers of letting this go beyond the few days after a bite.
peace be with you, grace Posts: 75 | From NC | Registered: Dec 2004
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