Canadian Lyme Disease Foundation Bulletin Board

[skotoff]

I have Morgellons and I am told that a lot of the symptons mimic Lyme Disease. Does anyone in the forum have Morgellons.
Sally

[sherry]

By the lack of response I would say 'I guess not' Sally. Do you have it?

Sherry

[skotoff]

Sherry,
Yes I do have it, do you?
Sally

[sherry]

Nope...just a mom with a son who has Rocky mountain spotted fever and Bartonella and Lyme (we killed off the babesia already)...

How are you feeling? Do you get good medical help for your disease?

What is the diagnostic procedures you have to go through to get a definitive morgellan's diagnosis?

Nosey aren't I...?

I have heard a bit about this nasty disease and watched a documentary on it...but I know little else about it. Kinda busy with other types of bugs.

Sherry

[skotoff]

Sherry,
This is my second bout of Morgellons. The first one was 4 years ago. I knew I wasn't crazy but I didn't know what I had. Walked out on 2 specialists who told me it was all in my head. There was a big Morgellons purge last month. Not only the programe you saw but many throughout the U.S. and also the newspapers. I was fortunate that my sister saw one of the TV programs and called me. The rest of the info I got from the internet. Joined two Morgellons groups, one in Texas and the other in San Fran. They have been very helpful. The Center for Disease Control in the U.S. is finally going to look into this disease. I have not been able to find a Canadian group or any doctors here who know anything about Morgellons. I just printed out a bunch of info for my doctor and hopefully he will be able to find out something. I diagnosed myself from the samples I have collected and saw replicas of them on the internet. Nasty, nasty. I think I have it under control right now and hope it goes away for a couple more years. There is no cure at the moment and know one has a clue as to what this disease is all about. Most people are self medicating and some are going crazy because Doctors have not acknowledged this disease. My joints are really bad at times (most times) and I have chronic fatigue. I have always been overly energetic and now I am delighted if I accomplish one or two things in a day. Bummer.....Most patients who have Morgellons have had untreated Lyme Disease. I want my doctor to test me for Lyme and I hope he does. A lot of Morgellons patients are nurses and doctors and teachers. My husband died five years ago and I spent a lot of time in the hospital with him. Who knows if this is where I contacted it.

Thanks for your concern and good luck with your son and his problems. You can email me anytime.
Sally

[sherry]

Hi Sally; I am so sorry to hear about loosing your husband. It seems that sometimes it is not enough to have one thing going on, but we need to face 10 things at a time. To loose a loved one and then your health cannot be making your life a nice stroll in the park.

I have heard the trials and tribulations in getting a diagnosis and treatment for Morgellan's is basically the same story as that being told by Lymies. It is like if you don't have a text book form of illness, that has been known since Aristotle's time you are suffering a mental illness.

Isn't it nice to know there are so many 'wanna be' sick people in the world? I think wanting to be sick must be the fastest growing disease in the world...it cannot possibly be explained by having a bacterial infection of some sort or another. That would just be too simple to contemplate.

Have you checked out our site? We have a new posting about Alzheimer's and bacterial infection. It is a really illuminating piece of research. I am hoping this Dr. A. MacDonald is going to come up with a definative test for Lyme sufferers...

I understand that you can see the 'threads' of Morgellan's with a simple microscope. It is hard to understand that if a person can see the threads in their own kitchen with a microscope how it can be so hard for a doctor to not be able to find/believe them in a labratory setting. I guess seeing is not believing in the case of Morgellan's eh?

I am surprised there are no Canadian Morgellan's sites. That is a shame. You should find out how to start one, as I am sure you are not alone in this in all of Canada.

Is there an area where you are more likely to have Morgellan's in the US? Like they say Lyme is possible in Conneticut and in New York....but I guess it 'doesn't happen' anywhere else. I bet you didn't know there was a big net that caught all the ticks at the border and checked them for diseases. If they are diseased they are not allowed into Canada. Isn't it nice to know how well we Canadians are being protected by our CDC?

It says that Rocky Mountain Spotted Fever is known to be endemic in Southern Alberta....but according to doctors you can't get it here. This, I believe, is what is called circular logic...or just plain medical loopy talk...however you want to word it.

So, how sick does Morgellan's make you? I understand you get muscle pains and those fibers...but do you have cognitive problems and gastro problems and swelling here and there like in Lyme? I am sorry, but I am totally ignorant. Like I said, the only thing I really know about that wretched mess is what I saw on that documentary and a few postings on our site.

Lymies understand what it is like to not be understood and not be taken seriously and not get adequate help and medical care. We also understand what it is like to be alone and either be sick or caring for a sick person. It is not very nice. I am sure you will be able to relate to many of the postings on this site.

So, you don't get antibiotics or anything for treatment? What is Morgellan's....is it bacterial, fungal, viral...? I cannot believe there is no treatment at all for something as horrible as that. I understand you also can be very itchy.

I hope you poke around this site and if you find any comfort here I am sure everyone will be more than welcoming to you. I think the main binding thing here is the feeling of not having to reinvent the wheel in every struggle you face. It seems we get tired of the fight at times and need someone to hold us up, dust us off, and head us back into the fray.

I wish you health
Sherry

[skotoff]

Sherry,
Thanks for the encouragement. I will read the Alzheimer's article that you mentioned. www.silentsuperbug.com (use google to view the video) because it is a better picture and www.dangerousmedicine.com/viewtopic.php?p are both interesting in the fact that they could be the start of all of these diseases. Scary as it may seem, dangerous medicine makes a lot of sense to me. If you want to read the article go into the web site and into the antibiotics forum or in the search bar type in Mycoplasma and you will see Morgellons/chemtrails. It was written May 15 second article listed in the forum. It is mind blowing. The article is called Mycoplasma.

If I knew how to start a Morgellons site I probably would. Will look into it at a later date.

The biggest outbreak of Morgellons is in Texas, the San Fran Bay area and Florida. It has spread to every state in the U.S. The disease is also in Canada and 4 or 5 other countries abroad. Hopefully the Centre for Disease Control in the U.S. will do something about it. Why not Canada?

Some people get very ill with Morgellons. I young man comitted suicide in the U.S. because he could not get help from the medical profession and this sparked interest in the disease. They are linking it to Lyme, MS, Chronic Fatigue, Fibromialgia and other diseases. The problem is, what is Morgellons? We suffer from black specs that appear on our body, white blobby things, string like creatures that seem to love cotton clothing and many different blobby looking things on our skin. Is it contageous, who knows? Is it a virus, parasite or pathogenic mycoplasma, who knows? A very strange and scary disease. I think the same applies to Lyme.

As for myself I have chronic fatigue. I get hot flushes then I feel cold. Recently I had very strong body pains out of the blue. The cold in winter really bothers me. My joints swell and they pain. When things come out of your skin you can feel them crawling under your skin...ugh. It is a good thing they are small because most of them can not be seen unless you are looking for them. A lot of sufferers have open leisions that will not heal and I have seen pictures of some of these people and it is awfull. I am now communicating with people all over the States who are suffering and will try anything to clear up the disease. There is no killing it. If you are lucky to get relief it is only because it is in remission. The web is loaded with pictures of the things that people get off their skin and people who have open leisions. If you want to see any just type in Morgellons Disease and take your pick.

Good hearing from you. Feel free to contact me anytime you like.
Sally[/u]

[sherry]

Hi Sally, this may sound dumb, but does this "invasion/infestation" not respond to antibiotics or antifungal or antiviral medications? or has any of that been tried? I am assuming it has...

Sherry

[skotoff]

Sherry,
From what I can gather since finding out about Morgellons is that some people have tried antibiotics and ozone treatments. You have to find a doctor who is willing to try something because it is not an acknowledged disease. Most people try their own treatments. I use oil of clove, oil of pepperment and tea tree oil in my body lotion, shampoo and conditioner. I also wash myself twice a day in rubbing alcohol and I have found it beneficial to vacuum my hair three times a day. Doing this seems to cut down on the spreading of the little black specs.
Sally

[NancyB]

Fascinating yet horrible to think of at the same time. I can't imagine what it is like to suffer from this disease. I do hope you find the answers soon.

Just out of curiosity I am going to ask Dr. B if he has any patients who have Morgellons.

Here's another disease linked to Lyme along with MS, Alzheimer's, CFS, FM....it really seems like Lyme could be called the root of all evil.

[sherry]

I wonder if washing once a month in Kwellada lotion might help? We got scabbies years ago from a little girl on a bus. My whole family got them. I had a little girl sitting on my lap while we were travelling by bus. I was reading to my boys and this little girl came and crawled up on my lap. She was filthy...but again I was unaware of bugs (seems to be a theme in my life now that I am thinking of this). Anyway, this little girl ended up just sort of living with us for the two day trip. She ate with us and played with my boys and napped on my lap...no her mom did not even check on her or speak to me the entire time.

Anyway, what I was getting at was that the doctor we ended up seeing thought we had dry skin...then found out we had scabbies after the dry skin lotion sent us all into an itching insane-like state. We all used Kwellada lotion and the bugs died. I don't remember how many times we had to do it, but I think it was twice. I was told that this stuff is really bad for you as it penetrates slightly under the skin...but it would be worth a try at least for those who are itchy.

Does it appear that Morgellan's is contagious?

I hope there is at least one Morgellan's Literate Medical Doctor (MLMD) around. Sigh.

Sherry

[skotoff]

Sherry,
I don't think I would try Kwellada. At the moment my treatment seems to be working and I hesitate to put anything that poisinous on my skin. I did try once head lice treatment and never again. It made me so sick...not worth it. With this disease they wonder if there is any relationship to a mutated version of scabies or head lice. I think that is far fetched but who knows. This disease is a combination of a few things. I am sure that a parasite is one part of the disease and the other I can't imagine. I had scabies when I was a kid. The whole school closed down because of the scabies outbreak and my sister and I nearly itched to death (not literally)it was awful.

As far as Morgellons being contagious, your guess is as good as mine. This is my biggest dilema because it is not known how this disease spreads. In some families only one person has it and in other families everyone has it and they seemed to get it on the same day which would make you think they all contacted it at once. I have read that one person in a household has it and later on another is infected, weird for sure???? My close friends and family know I have it and it is their decision to be around me or not be around me. To my knowledge none of my friends or family have contacted it from me. I am very clean by nature but fanatic when I get this disease. God, I do three or four loads of washing a day and I live alone. Anything I sit on or my cats sit on is washed daily. Thank goodness the cats are out most days and nights because it is still hot here. I have been working in the garden and the heat does not help this condition. When I come in I shower and all my clothing that I had on goes in the wash. I soak my hairbrush every few days in Polident and then I do the same with my toothbrush. I don't have false teeth but I thought Polident would be a good disinfectant and it is. It sure cleans up a hairbrush or comb or toothbrush...not in the same vessel though. Because my feet have been the biggest problem this time I have started to soak my socks in Polident before I wash them.

I checked with my doctor and he still has not had time to read the info on Morgellons. This will be my biggest problem, getting any kind of medical attention at this point in time is almost impossible. I have three friends who are doctors and one of them has seen my samples that I keep. He said he has never seen anything like it in all the years that he has practiced medicine. My other doctor friends are not as open minded but I am anxious to engage them in a Morgellons conversation and feel them out. Anyway, that's life.

I want to know more about Lyme. How it affects you and what you can do about it. What are your symtoms?

Sally

Sally

[sherry]

Hi Sally; I don't have Lyme myself. My son is the victim and possibly my husband. My husband was just tested one month ago. The tests don't come back for 2.5 months if my son's time line is any indication.

The only way I know Josh (my son) has Lyme is that the LLMD we are working with says he has it. He does have a high titer of Rocky Mountain Spotted Fever (RMSF) and an incredibly high titer for Bartonella. My husband has "MS" which is considered 'an atypical presentation' of MS. I expect he also has RMSF. Time will tell.

Many of the issues our family has had to deal with is on the link 'More Advice Needed'. Our ongoing saga is a bit on the urgent side due to the horrendous pain Josh has in his stomach. We are heading to a surgeon today who is going to do a laprascope tomorrow to see if Josh has peritonitis or not.

Josh has improved significantly on abx (antibiotics), but the pain has increased and he is again experiencing the chemical taste in his mouth. He was physically assaulted by a gastroenterologist the other day and things have gone from bad to worse since then.

What has improved is his ability to think and talk. He is animated and can carry on a conversation. All his word retrieval problems have diminished significantly and he appears to have the energy to hold a conversation. The pain the past few days has reduced this quite a bit, but he would be capable if it weren't for that.

Most of Josh's random pains are gone. His stiff neck is still there as is the back and hip pain. He occasionally gets electrical shocks and weird vibrating sensations in his hands, but these events are further and further apart now.

Overall Josh would be about 60 to 65% better if he did not have this stupid pain. Hopefully that will be a thing of the past after tomorrow!

I am certainly glad nobody here has Morgellan's. If you need to be fastidiously antiseptic I am afraid we would be doomed. Doomed! What an imposition on your life! I think I would take the chemical route and give it a try. But then again I always try to find the fast and dirty route to any solution. My patience is only good for so long before frustration sets in and I begin to wiggle on my chair. I would try hard core antibiotics, accompanied with the banned program, and massive amounts of toxic waste designed to kill all forms of life. I would also try washing my clothing in bleach and lye if necessary!

I am not nearly as afraid of toxins as some others are. I worked as a drug and alcohol counsellor before my life turned into a casual glimpse of days gone by. I know what the body can tolerate and recover from. If you see the ingredients for methamphetimine, one of which is camp stove oil, you would also know what a human can spring back from. I had children, in their formative years (twelve to eighteen) who had smoked, injected, and inserted enough meth/crack/cocaine/E/heroin/demerol/alcohol (the list continues) and after 1 year they were plump and attending school. Their IQs were lowered by a significant margin, but overall their health was very good. So, needless to say a bit of stuff given to me by the medical profession is not very scarey. I also know that there is recovery from almost any addiction if you want to be free. Nothing a doctor could give you could compare to methamphetamine! Nothing! Absolutely nothing. You could eat bags of sulphur and still be better off than doing meth. You could smoke 10 packages of cigarettes a day and still be better off than doing meth. You could inject yourself with cat urine and be better off than doing meth. You get better after meth if you only do it for a few years.

Anyway, I got off on a tangent. Sorry. haha.

Cheers
Sherry

[skotoff]

Sherry,
I agree with you about taking antibiotics or other drugs if it will cure the disease. All of my correspondence with Morgellons patients and some doctors out there find that nothing kills this disease. They might get a little relief once in awhile but they can not treat something that is as strange as this disease is unless they find out what it is. These fibres that manifest themselves on our bodies do not fit the mold for any known substance. They are thinking the body is producing them, but why? I just talked to a girl in Sacramento who had Morgellons 12 years ago and now has it again. She is devastated because it is driving her crazy and somehow gone into one of her eyes. She is seeing an Opthamologist and he is consulting with other doctors because they don't know what to do. There is a chance she could lose her vision. How horrible is that?

You really have your hands full with your son and your husband's illnesses. God, how do you do it? If my husband was alive today he would have a fit over this disease. Boris was Greek and super clean. Anything like Morgellons would freak him out. I am glad he is not here to witness what I am going through.

As far as washing goes and this includes laundry and my body, bleach or anything else you might think of does not kill this little bugger. I have tried everything. One scientist that I was just reading about has been analysing some of the things that we get and he is baffled. He can not kill them. One theory is that the Western Alliance did a lot of genetic altering for germ warfare and decided to do a little experiment on the U.S. and Canadian population to see how effective it would be. The article in Dangerous Medicine tells all about it. I would not doubt this for a minute. According to the article this was the start of Fibromyalgia and a few other new diseases. The article also stated that they dropped this stuff on the Vietnamese. The video Superbug looked like it was filmed in a lab somewhere, after hours, then sneaked out of the lab and put on the net. Anyway, it is scary.

Let me know how your boy is .

Sally

[Deedee]

This sounds so devastating. I'm so sorry you're having to go through this.

If it's a living organism, it has requirements, and if we can hit upon a way to thwart those requirements, then, Voila! dead bugs. Yay! Somehow, some way, this can be beaten or overcome, and your body can heal.

A thought ocurred me, that this thing does sound somewhat similar in behaviour to a fungus or mold; I'm assuming this has been ruled out by research?

The things you mention as effective, oil of clove, oil of peppermint, tea tree oil and rubbing alcohol, are all used in one way or another by organic gardeners (which I am) as fungus killers, esp the tea tree oil. Fungus is also treated by using acids such as vinegar (acetic acid) and milk (lactic acid). I wonder if trying to make your body chemistry slightly more acidic would help?