It seems to me from the large amount of suffering on the "World's Largest CF & FM board" that most posting there really have Lyme not CF & FM.
There seems to be a large amount of confusion about testing. The majority believe they've ruled out Lyme because their doctors have told them they don't have it.
Many have high viral titers to many pathogens too. Is there such a thing as a mixed infection syndrome? Say Lyme, Candida, and multiple viruses?
I'm looking for links to info about the misdiagnosis of Lyme as CFS or FM. Thanks!
[ 12. November 2007, 07:52 PM: Message edited by: Munch ]
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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posted
Dr C calls it "infectious soup"! I think we all have a mixture of who knows what!!
Headed there now!
Anyone with articles, please bring 'em up!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Be aware, I have heard of people getting booted off of that forum for talking about Lyme too much.
I actually found it a great place for information and support when I was dxed with fibro, before the Lyme diagnosis. I haven't posted there since, except to explain that I was misdiagnosed many years ago. So I can't attest to whether what I've heard was rumor, misinformation or true.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
None of us have anything to lose by being booted, in my opinion. We may save a few lives.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
hi munch,
how about editing subject line including IMMUNE SUPPORT FM/CFS BOARD so all readers know what you are referring to especially those that frequent there!
to edit, click the pencil/paper that opens up both subject line and body text.
i read their bi-weekly newsletter which has good stuff in it. THEY HAVE SHOWED LYME in the Q/A and or comments WEEKLY now! that's progress.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Munch and I are frequent members of the immune support group. I started there when all I thought I had was CFS. It was posters like Munch and others that got me thinking about Lyme. Sure enough, I was diagnosed by Igenex western blot last month. Finally, an answer to my horrible illness.
It is so comforting to find this forum where so many others have symptoms exactly like mine. I believe the more we share our experiences, no matter what the forum, the more we get the word out there.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I also am a long time member of that forum, and just found out I have lyme disease.
I haven't noticed anyone being booted for talking about lyme disease on the CFS/FM board.
One poster complained, but so many great comments were posted to the thread, I think it got many to thinking about the possibility.
It's too bad the medical field isn't ready for the large number of people who are now going to be wanting to know if they have lyme disease.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I was just sharing information I have heard before. I actually get the feeling, from articles they post on the website, that the board has become much more welcoming to the idea that Lyme might be a cause of fibro or cfs for many people.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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tailz
Unregistered
posted
Actually, I think all people with Lyme, chronic fatigue, and fibromyalgia really have this:
The truth of the matter, your cell phone and your WiFi might very well indeed be making you and those around you sick! Please read on!
1.Symptoms known to be caused by exposure to microwave radiation: insomnia and other sleep disturbances, headaches, swollen lymph nodes, depression, anxiety, loss of appetite, hypoxia (lack of oxygen getting to your tissues), inability to concentrate, forgetfulness, dizziness, irritability, nausea, hyperactivity, fatigue, vision problems, dry eyes, eye inflammation, weakened immune system, allergies, frequent urination, night sweats, extreme thirst, etc. These symptoms very often suddenly appear in people who have had a cell phone tower installed nearby their home.
2. Microwave exposure induces Oxidative Damage leading to depletion of the body's natural store of antioxidants like Super Oxide Dimutase (SOD), Catalase, Glutathione, CoQ10, and Melatonin. When the body becomes depleted in antioxidants, premature aging, increased infections, and sticky blood are just a few of the consequences. With a depressed level of antioxidants in the blood, for example, high-density lipoproteins (HDL) or the good cholesterol will bind with free radicals (oxidants) turning the good cholesterol into bad cholesterol or low-density lipoproteins (LDL). This leads to more viscous blood which in turn can lead to blood clots leading to strokes and even heart attacks.
3. Microwaves have been known to effect an abnormal influx of calcium into cells. When there is an abnormal influx of calcium into mast cells, for example, they produce histamine. This is just one of the ways in which microwave exposure has been known to trigger or aggravate allergic reactions.
4. Microwave exposure has been known to induce mitochondria dysfunction. The mitochondria are the powerhouse of the cell. Dysfunctional mitochondria will interfere with the cells' ability to produce energy and can be linked to fatigue and possibly even obesity.
5. Microwaves have been shown to depolarize the body's red blood cells. This will cause the red blood cells to clump together and when this happens, the amount of oxygen getting to the brain cells and the cells of the body's other organs is diminished substantially leading to hypoxia. This can cause symptoms similar to altitude sickness: nausea, dizziness, inability to concentrate, and so on.
6. Microwave exposure has been shown in studies to induce a decrease in the numbers of Natural Killer (NK) cells, a form of white blood cell which is the body's first line of defense against pathogens. This leads to the body's weakened ability to recover from viral and other types of infections. Therefore, people exposed to microwave radiation would take longer than normal to recover from your day-to-day infections.
7. Exposure to long-term microwave radiation has been shown to change a particular form of white blood cell (lymphocyte) ratio - known as the T-helper/T-suppressor (T4/T8) cell ratio - from normal to abnormal. Abnormalities in this T-lymphocyte ratio have been shown to lead to an increased susceptibility to viral, fungal, and bacterial infections. Symptoms include sore throats, low-grade fevers, weakness, persistent fatigue, and swollen lymph glands.
8. In fact, research has shown that exposure to microwaves and other electromagnetic radiation has been shown to increase viruses, bacteria, mold, parasites, and yeast in the blood of the human host.
9. Microwave exposure has been shown in studies to induce what is known as "subliminal" stress ( since the body does not know it is being stressed) causing the adrenal glands to excrete an abnormally greater amount of cortisol and adrenaline. Excretion of adrenaline, for one, can lead to irritability and a feeling of hyperactivity - the latter now very common in children with Attention Deficit Hyperactivity Disorder (ADHD). In a continuous state this will eventually lead to adrenal exhaustion, in which the adrenal glands just stop working.
10. Microwave exposure has been shown to cause a decrease of 5-HT in the blood. 5-HT is a precursor to the production of the brain hormone serotonin. Low levels of serotonin have been linked to anxiety and depression. An increase in anxiety and depression can in turn be linked to to an increase in the number of suicides.
11. Microwave exposure has been shown to induce a decrease in levels of the brain hormone norepinephrine. This hormone is essential for control of the autonomic nervous system, and lack of it can lead to autonomic nervous system disorders. For example, if the autonomic nervous system is not working properly, the body will have trouble regulating its temperature - i.e. cooling itself when it is warm and heating itself when it is cold. This could lead to feeling colder than one would normally when it is cold and feeling warmer than one would normally when it is warm. An abnormal decrease in norepinephrine levels has also been connected to short-term memory disturbances and depression.
12. Production of the brain hormone melatonin has also been shown to be altered by exposure to microwaves. This brain hormone and antioxidant is necessary for proper sleep. 42 million (approximately one in five) Americans now take sleep medication for insomnia while others often experience sleep disturbances due to exposure to electromagnetic radiation (EMR). A drop in melatonin levels has also been connected with increases in breast cancer.
13. A drop in the levels of the brain hormone, dopamine, has also been shown to be connected with microwave radiation exposure. A drop in dopamine levels has been linked with depression.
14. Exposure to electromagnetic radiation has been shown to effect an abnormal drop in the levels of the neurotransmitter acetylcholine. A drop in the levels of this neurotransmitter has been linked to a number of neurological and neuromuscular disorders - including Alzheimer's disease.
15. Some electromagnetic frequencies have been shown to induce restlessness and hence may very well also be responsible for a syndrome called restless leg syndrome (RLS).
16. Electromagnetic fields- like those emitted by cell phones - have been shown to alter regional cerebral blood flow. In conditions like autism and chronic fatigue syndrome (CFS) it has been shown via SPECT (Single Proton Emission Computed Tomography) scans that there is a decreased flow of blood to the brain.
17. Numerous studies have connected microwave and other electromagnetic radiation exposure to an increase in allergies. Microwave exposure has been shown to turn on mast cells to produce more histamine - the chemical responsible for allergic reactions - and other electromagnetic fields have been shown to actually increase the number of mast cells in the body. Microwaves have also been found to increase Immunoglobulin antibodies in the body. Immunoglobulin antibodies are responsible for triggering an allergic reaction to a particular substance or protein. Many researchers and scientists were - and still are - puzzled by the fact that the East German population had so few allergies in comparison to the West German population when the two countries unified. But what they failed to examine is the simple fact that East Germany had much stricter regulations regarding ambient radiation levels than West Germany. Since East Germany adopted West Germany's standards, allergies in former East Germany have since reached par with the levels of former West Germany.
18. Microwave exposure has also been shown to adversely affect the heart and could very well be linked to heart irregularities and responsible for triggering heart attacks.
19. Exposure to microwave radiation has also been shown to effect an abnormal increase in nitric oxide (NO). One theory holds that an abnormal increase in cellular calcium will also lead to an abnormal increase in cellular NO, which in excess produces a damage-producing free radical or oxidant called peroxynitrite.
20. Microwave exposure has been shown to open the blood brain barrier (BBB). The BBB protects the brain from foreign substances like viruses, bacteria, and chemical toxins in the blood which may injure the brain. Thus, exposure to microwave radiation could very well open people up to viral and bacterial infections of the brain which they would not normally get otherwise.
21. There has been a drastic increase in brain tumors and other cancers - not to mention diseases such as autism, ADHD, Chronic Fatigue Immune Deficiency Syndrome, and Alzheimer's - with the advent of the cell phone. Especially, after 1984 (the year the first cellular phone networks were set up in most major cities in the USA) there was a notable jump in children's brain tumors according to the National Cancer Institute (NCI). Brain tumors are now the number two cause of death in children followed by leukemia. Just last year seven people in Melbourne at RMIT University working in a building on the top two floors underneath a cell phone mast suddenly were diagnosed with brain tumors. There has also continuously been an exponential increase in autism since the advent and increase in numbers worldwide of the cell phone.
22. There have been numerous confirmed cases of deformities in animals and plants near cell phone towers. Now, in heavily electropolluted Japan it is very common for women to have miscarriages in their last trimester of pregnancy. Usually, the fetus is deformed. Cell-phone use has also recently been shown to lower sperm count in men the longer they use the phone ( e.g. one hour as opposed to four hours).
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
The microwave does not contain bacteria - well, not unless it's an oven that isnever washed out.
EMF's, (whether an oven or other waves) are not great for us and I do think harmful, but they cannot infect one with a spirochete, a protozoa or mycoplasma.
posted
Munch-I have been following your posts and was going to track you down over at immunesupport. I had also been over there for years.
I was diagnosed with sarcoidosis in 1992 by a Kveim test at Mt. Sinai Hosp. in NYC. The test is similar to a TB test. It was positive and the cells were biopsied.
One doctor said it was sarcoid and the other said the cells were too large. They decided to call it sarcoid. Since them I have been treated with massive doses of prednisone and some methotrexate. They have really done a lot of damage to my body.
The good thing about the sarcoid diagnosis is that my insurance pays for almost everything.
Like many others I had several tests for Lyme and they were all negative. My doctors all said that I didn't have Lyme. Unless you are really proactive and realize that something has to be really wrong if you have so many of the Lyme symptoms.
I finally found a doctor to do the Igenex test and I was positive. You are one of the many people that I want to thank because I read your posts and the sarcoid diagnosis caught my eye.
See below:
1: Chin Med J (Engl). 1992 Jul;105(7):560-3.Related Articles, Links Borrelia burgdorferi infection may be the cause of sarcoidosis.
Hua B, Li QD, Wang FM, Ai CX, Luo WC.
Naval General Hospital, Beijing.
Serum antibody to Borrelia burgdorferi was measured in 33 patients with sarcoidosis which was confirmed clinically and pathologically. The results showed that 81.8% of the patients were positive for anti-B. burgdorferi antibody.
In addition, a strain of B. burgdorferi was isolated from a patient's blood. Fifteen patients received ceftriaxone 2g per day or penicillin 12 million U per day.
The antibody titers of the patients decreased to nearly normal levels rapidly. Serum angiotensin converting enzyme (SACE) turned to normal range after the treatment.
According to the findings mentioned above, we consider that B. burgdorferi infection may be the cause of sarcoidosis and sarcoidosis might be a specific type of Lyme disease.
I think the doctors need to be educated because they're the one's telling their patients that they don't have Lyme.
Thanks for all of your posts and helping so many! I think Lyme causes CFS and FM.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I'm twinofdar over at Immune Support. My sister and I (as well as Daisys and Cherylsue and others at IS) support Munch in her indeavor to help the CFS/FMS folks. We could use more help -yeah!
One thing about that board is that they are open to Lyme posts and have been for a while now because SO many members have been properly diagnosed with Lyme.
Some people continue to resist (and are even in denial with a postive Ignex at times) but so far no big "Lyme fights" like I've seen on other FMS/CFS boards.
Posts: 1761 | From USA | Registered: May 2006
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posted
As a long-time member of the CFIDS community and a not-so-long-time member of the Lyme community, I don't agree that there's this massive resistance in the CFIDS community to Lyme (maybe on those boards, but not elsewhere).
I know of very few people with CFIDS who haven't explored all possibilities, including Lyme, and most give up the chase more from exhaustion than anything else. I also know many with CFIDS who have not responded well to long-term antibiotics, even with LLMDs, so I do think it's dangerous to assume that all cases of CFIDS are Lyme. However, most of my CFIDS docs were open to the possibility of Lyme, though I had to do a lot of educating.
I've been homebound for many years, and getting blood taken has been a major production -- nearly impossible -- and I simply could not have climbed over the hurdles (i.e. gone to doctor's OFFICES) to get the right treatments if I hadn't been bitten by a tick this past summer and had a clear direction.
Does this mean my fifteen years of CFIDS have been Lyme?
I still don't think so, as I really feel like my symptoms are pretty different from those of most Lyme folks I have encountered here, but I would much rather hang out here than on CFIDS boards, because I feel less hopeless since some people on here are actually getting better. And believe me, if I recover on antibiotics, I will be more happy than I can say.
I think one way to approach those boards is to simply invite people over here, and suggest that a lot of the discussions here have common threads -- i.e. mitochondrial dysfunction, mycoplasma, natural antimicrobials, etc. I think most CFIDS patients, like most Lyme patients, are hungry for anything that might help and try to keep an open mind.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Mojo, that's good to hear.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Aniek, I know of people, who have been booted from that board, at least one for saying she had Lyme. She has been a member here for quite a while.
In the past you were not allowed to post URL's either. There was a lot of banning going on without reason and many of us left several years ago for that very reason.
At the time some started a new board, but as many were dx'd with Lyme they went looking elsewhere for more info on Lyme.
I heard about Lymmenet from the second board, not affiliated with ProHealth.
In fact, when we tried to tell people where we were it became a game to see who would get booted next for posting it!
One complaint many had was that it seemed their biggest interest was not in helping the patients, but in selling their products.
It makes this place look like a walk in the park!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Yes, you have do your own homework if you have a chronic illness. Saying the dog ate it gets you no where. I know my body better than any doctor.
When you walk in with articles from the internet some doctors roll their eyes. You know they are thinking "another cyberchondriac" or "problem patient!"
Too bad -- I'm the paying customer. Why do we tolerate shoddy service from them that we wouldn't allow from a plumber? Because our insurance company mandates that we see this idiot?!
Why don't some of us have enough respect for ourselves to search out answers on our own? Financial reasons seem to be the biggest hurdle. If it means paying out of pocket or traveling to see an expert -- so be it!
The biggest improvements to my health have come from hormones especially HGH, antibiotics, candida treatment, and a no-processed food diet paying careful attention to food allergies and intolerances.
Nebulizing compounded glutathione for MCS has been very helpful too. For an explanation visit:
My candida IGM titers would not come down into the normal range on both Diflucan and Nystatin. After 18 months of treatment. I didn't get better until heparin for hypercoagulation was added.
Like many others diagnosed with CFS & FM, I have high IGG titers to many pathogens. In my case it's EBV, candida, and chlamydia pneumonia. Molly and Dar helped me figure out my negative Igenex test was really positive. So Borrelia was added to my soup de jour.
Are pathogens hiding from my immune system in the fibrin of my blood? When labs test your blood does any of the fibrin from your blood vessels get into the tube?
The only thing that makes sense to me is that some of it does. Is that where the high IGG titers come from? Where else could these bugs be camping out?
Unless fibrin is busted up to me that means the infection is still there regardless of the treatment or the pathogen.
Do IGG ABs go down after hypercoagulation is treated? If so then most docs have another think coming about what they learned in medical school on infections.
If treating hypercoagulation is the answer to getting rid of pathogens once and for all then will patients be willing to inject themselves? Is oral heparin as effective?
This article ties the whole infection process together and does a great job explaining what pathogens do to the immune system and our Hypothalamus Pituitary Adrenal axis.
Someone needs to consider all of the functions of these glands and the effect of missing hormones post infection. Possibly we'll all be able to recover.
Someone on the Immune Support board suggested that our fatigue is the result of an immune system stuck in overdrive fighting off pathogens. Her theory is that a healthy immune system uses up 10% of the bodies energy. Maybe it's 40% because of infections.
Lack of libido has been the driving force behind my quest for recovery. After the infections are cleared up I think there are multiple hormone deficiencies to correct. Is the fatigue and lack of sexual desire the body's way of telling us not to reproduce? Is it our brain's way to protect our offspring?
Some of the symptoms overlap so how can we tell if the root cause of the symptom is from hormones or infection? The only way I know to eliminate the possibility of overlap is to get all of my hormones into normal ranges.
I'm low in thyroid, growth hormone, estrogen, testosterone, DHEA, progesterone, and hydrocortisone so I supplement and have lab work done to determine if my levels are correct.
My compounding pharmacy has been the biggest help to me in trying to identify and correct hormone deficiencies. I fax all my labs to their patient empowerment program consultant. They provide me with a referral to B-HRT docs in my area.
Because my estrogen and testosterone would not climb back up into the normal range I opted to get B-HRT pellets inserted into my hip.
My levels climbed to just below normal for the first time in years. I needed a booster dose to get them towards the middle of the range.
They've been in for only 45 days so it's too soon to say if my libido will return. I should know in about 2 weeks.
My dose of HGH is being titrated upwards too. Hopefully, between the pellets and HGH my bones will go back to being normal.
Mostly I wish there would be some way for all of the different health boards to compare notes. As an activism activity is it feasible to contact message boards for the most common Lyme misdiagnoses to see what areas we might share information?
I am in contact with the Endometriosis Association (EA). The women with the most severe disease typically have CFS/FM/Lyme symptoms.
Does hypercoagulation play a role in endometriosis? Infertility is common. The www.hemex protocol was designed for infertility.
The EA has known that candida plays a major role for years. Participants at their conventions have the choice of ordering a candida meal.
Being creatures of habit we all stick with what we know. When the only thing you know is your own little world you still think the earth is flat.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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posted
I practically lived on that board when I was diagnosed with Fibromyalgia some years ago. When I found out it was actually Lyme, I tried to share, but nobody there seemed interested AT ALL. I ended up getting banned for posting urls to articles and such. No warning or explanation, just suddenly banned! I came here and haven't looked back.
Posts: 220 | From central TX | Registered: Jun 2005
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posted
Munch...I took oral heparin for about 3 years. I think it worked well. They say it's not as effective, but I don't see why not....all you have to do is raise the dosage until the PTT comes back in range.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I gave up on the place.
I was a member there while dx'd with Fibro/CFS years ago, and when I discovered it was Lyme I had, and had had all along, I started talking, and talking and talking. That was 2003.
Some listened, and I do believe a number of them did come here and some also got dx'd with Lyme and got better.
but, I have been back since from time to time and tried to help people, but there is so much resistance it gets too draining and frustrating. So, I gave up and left it to others to do.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
I just went and checked out the board. It's doing fantastically well, compared to some fibro boards. People really realize they have Lyme disease. That's a huge achievement for this board. We're coming along!! Now for the rest of the fibro etc boards -- let's go get'em...
[ 14. November 2007, 06:49 AM: Message edited by: Robin123 ]
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