Morgellons? Dear God, what ELSE?

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+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/11/2010 4:38 PM (GMT -7)   
I swear to God I was not looking for this -- I happened upon it while doing searches on Dr. Burr and Bartonella, wanting to learn if my abx would treat Bart, if I have it.
 
As some of you know, I have been posting recently about the 'parties' in my feet.  Feels like something is bumping around in them, and yeah, it might be compared to something creeping and crawling around in them.
 
As you also know, I've been looking at this in relation to bad spider veins, varicose veins and squiggly things that look like veins -- some purple, some red, some blue -- they go down into my feet. One ankle is almost solid purple on one side. When I look closely, I see that these are not at all like spider veins (which I have a lot of) -- I do not know how to describe them. (next weekend, I'll get my daughter in law to photo them). 
 
I have pretty bad spider veins all over my legs, but what is so fishy, now that I think of it, NONE of them have worsened, spread, and gotten grosser like what is going down my ankles into my feet.
 
I have NEVER thought of my problem as varicose veins and I didn't ever think they looked like varicose veins. I don't really examine every little thing that carefully, you know. I have only admitted to 'varicose' veins since I saw my new Dr last week. I had a note to ask him to please look at my ankles and he did. He only remarked, 'you mean your varicose veins?' And I said, yeah, I guess, but that the squiggles and marks all over my ankles going down into my feet are just getting worse by the minute. And I showed him the red sores all over my legs and he just asked if they had only occurred since my tick bite and I said yes.
 
Up til a few days ago, the crawling, bumping around sensations were not that frequent and noticable only at times, so I never mentioned this to the Dr. These past few days, it has been constant.  And it seems like what I thought were veins are raising higher and higher.
 
So NOW I happened upon freaking Morgellon's disease and this looks and sounds exactly like what I have, except I have not pulled any freaking fibers out of anything and I do not ever intend to! The ridges and the bumps I am seeing UPON CLOSE EXAMINATION are NOT varicose veins -- they look more like the 'tunnels' and lumps I've seen in some photos.  IT IS SO GROSS!
 
My sores are not near as bad as the photos I've looked at, still, they are getting worse.  My toes are all red.
 
Upon looking this up, then I see this crap is more mysterious than Lyme -- some believe it is delusional-- my God, what is going on??
 
I'm sorry, I'm freaking out right now. They don't even know what this is. But so far everything I have looked at has mentioned it as possibly accompanying Lyme, babesia, or bartonella.  They don't know the link. It also causes profound fatigue, cognitive issues, and other TBI symptoms.
 
DOES ANYBODY KNOW ANYTHING about THIS? I am freaking out, because it does, in fact, feel like there is something alive in my feet and it has started moving upwards, slowly.  I thought it was funny til now -- now I wonder what in God's name is in there??
 
I don't know when I'll be back here, have to get myself together for work tomorrow. I don't know how else to describe it. 
 
I am so sorry, I know that most of you are dealing w/ much worse issues and this doesn't hurt, but is scaring me -- ESPECIALLY since so many believe this is made up by hypochondriacs.  I FEEL LIKE A FREAKING FREAK!  I AM a freak! No one will ever believe this!!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/11/2010 5:06 PM (GMT -7)   
Razzle?  You know so much about all this crap -- please -- do you know anything about this?? 



Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 7/11/2010 5:35 PM (GMT -7)   
I have heard of Morgellon's and I do believe it is a real disease. I don't think it is Lyme, but may be a parasitic infection that can be transmitted by the same vectors as transmit Lyme because most with Morgellon's also seem to be dealing with Lyme. Could it be some strange variation of Lyme? I don't think it is, but that's just my opinion. I know I saw something (possibly in "Under Our Skin" - I don't remember for sure) about this disease and how one lady who has it was taking the mysterious threads and putting them under a microscope to see if she could figure out what they were (she was a microbiologist or something like that). But I don't have any new info about Morgellon's to share with you.

My advice to you is the following:
1. Take a deep breath and try to relax.
You haven't seen any of these strange threads appear coming from you yet, so don't panic about something that isn't happening and likely may not ever happen (Morgellon's is much less common than other Lyme coinfections).

2. Take pictures every so often (maybe every other day or something like that) of these things on your legs/ankles and document their progression if that is indeed happening.

3. Make sure you are using detoxing methods to help reduce herx severity. If this is from herxing, then detoxing should help.

4. Realize that Lyme itself can do a wide variety of strange things to the human body and that is the most likely explaination for what is going on. If Lyme does indeed stimulate the formation of new blood vessels, then that's the likely cause of this mystery in your feet/ankles. And rapid tissue growth would feel very strange I would think.

Something else that may feel strange is if the circulation pattern in your feet/ankles is altered by this phenomenon...I think of how it feels when I sit on my foot and it goes to sleep - the feeling in the foot when I move it out from under me is pretty strange & creepy, too. And realize in some other forms of neuropathy, there is also altered circulation - think of those diabetics who have skin sores and such that don't heal because of poor circulation. I know Bartonella is able to cause blood vessel inflammation, which can prompt the body to make new/different blood vessel pathways because of the inflammation blocking the existing blood vessels.....and the vessels affected by the inflammation get really strange-looking (they get all curly/squiggly), too.

4. After a few rounds of photos, if they show progression/change, take those photos to the doctor and ask him point-blank what is going on and why is it happening. They should not brush off a valid concern. If the doctor still brushes you off, I'd suggest going for a second opinion somewhere else if you can.

The above is not intended to tell you what to do - they are just things I would do if I were you, and maybe give you some ideas for things to talk with your doctor about.

I hope this helps. Take care,
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/11/2010 7:27 PM (GMT -7)   
AGain, thank you, Razzle. You have been so much help. I did not read that Morgellons was ever considered to be Lyme, but that when Morgellons is present, frequently Lyme, Bart, or Babs are also present. So I agree w/ you that it could perhaps be another piece of crap that infected ticks carry. It's weird that I would be feeling this over 3 yrs from being infected. Altho, the strange squiggles and wildly spreading veins have been coming on since that time. Maybe this is late stage.

It is overwhelming trying to figure out all this crap related to lyme. People already believe you are a crazed hypochondriac, imagining strange things, trying to get attention.

Thanks again for your thoughts on this. You are always so helpful and I've never yet seen you freak out, like many of us here.....
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 7/11/2010 8:36 PM (GMT -7)   
Believe me, I've done my share of freaking out, especially prior to getting diagnosed with Lyme. Once I got diagnosed (2007) and started researching Lyme/coinfections, nothing surprises me anymore about this crazy disease.

I'm glad my posts are helpful...take care,
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


Danser
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 7/12/2010 2:28 AM (GMT -7)   
Morgellons is a systemic disease that has not yet gained widespread acceptance in the medical community, yet it actually exists just as AID/HIV existed 30 years ago before Medical science recognized it. It is similar to scabies, which is a contagious skin disease in which parasites burrow under the skin and lay eggs. These parasites belong to the arachnid family. Symptoms vary from one patient to another. Others, such as skin lesions and a “crawling sensation” in the skin are consistent. Areas of the body where the disease seems to be most severe are on the hands, behind the knees and arms, on the chest and back. Other common physical symptoms are rashes and pain that is similar to fibromyalgia. Severe depression often leading to suicide is all too common. The Morgellons Research Foundation located at Oklahoma State University, has identified 93 symptoms common to Morgellons sufferers. A complete list of these symptoms can be viewed here: http://www.morgellons.org/symptoms.htm along with a complete case definition: http://www.morgellons.org/case_definition.htm
When seeking medical help, Morgellons sufferers are nearly always diagnosed with Delusions of Parasitosis (DOP). Currently, there is no known test for Morgellons disease so patients are always told "it is all in your head" and are prescribed physo-tropic drugs and occasionally antibiotics. Neither provide any relief whatsoever from these horrible symptoms . The patient's family often believe the doctor and withdraw their support. Morgellons patients begin to feel hopeless and continue their descent into severe depression.
Many patients have reported trouble concentrating while constantly experience fatigue. When affected areas are viewed under a microscope, many Morgellons patients have clusters of multi-colored fibers beneath the unbroken skin. These fibers may or may not be visible with the naked eye. The fibers have been tested in several labs. They will not burn until they reach 1,400 degrees Fahrenheit and are covered in some sort of high-density polyurethane. A recent study has found microscopic parasites in some patients. This parasite is known to feed on algae, bacteria and decaying organic materials. They thrive in wet or damp surroundings. Unfortunately, there is no meaningful research being conducted since the Morgellons population, while increasing daily is still statistically insignificant.
The results are inconclusive as to the cause of Morgellons Disease. The Centers for Disease Control refers to it as an unexplained dermopathy and they are currently conducting an investigation at Kaiser Hospital in Oakland, California. Many dermatologists and psychiatrists consider this a psychological disorder, rather than a physical disease. Medical doctors generally treat the condition by prescribing antibiotics, antifungals or herbal supplements. These methods are considered treatments rather than cures, as the symptoms return when discontinued. Colloidal silver has been marketed as an alternative medicine for this condition as well as many others, from fibromyalgia to E. coli. From a medical standpoint, there is no proven effectiveness for this treatment. Until now, that is.

Regardless of official reports, many Morgellons sufferers have found relief when NutraSilver is used. They state that the lesions begin to heal after a week, with the sores dissipating completely within three weeks. The severe cognitive issues generally resolve in about two weeks. The bouts of stinging and biting sensations that plague sufferers are reduced or disappear altogether. The most severe symptoms are debilitating and in many sufferers, their quality of life is reduced. When taken as suggested, these fortunate Morgellons sufferers actually get their lives back; their energy returns, their brain-fog reduces and they begin to feel like themselves again. For more information on NutraSilver, visit the web site at www.nutrasilver.com

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 7/12/2010 6:26 AM (GMT -7)   
Hugs to you +Lyme. I hope this is not what you are dealing with and can find some other cause for what you are feeling.

I am a member on another forum, MD Junction. One of the lyme members also has morgellon's. Her name is Tara. She posts often.

Md Junction has forums for both lyme and morgellons - here's a link that you may find some interesting info. The people there are kind. You are not alone.

http://www.mdjunction.com/morgellons-disease

vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 7/12/2010 10:32 AM (GMT -7)   
Nutra silver did nothing for me - I'm not saying it doesn't work for some, it just didn't work for me. I've been getting treatment for Chronic Lyme and Morgellons for four years now. One thing I can advise, try to stay calm. Don't start saving samples to show doctors - they'll just think your're nuts. There's even a term for it.
 
Victoria

Post Edited (vicparis) : 7/14/2010 9:54:23 AM (GMT-6)


+Lyme
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Date Joined Apr 2009
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   Posted 7/12/2010 7:09 PM (GMT -7)   
Hey, I'm just getting ready to read comments from Danser on down, which I know I will also appreciate --- but I have neglected to thank Patti and Caldonia Sun for the hugs -- I felt them! They felt good! 
 
OK, now I'm going to read the posts and I'm sure I'll have questions for those of you who posted info later.
Thank you everyone again. I will try to catch up. And many hugs back to ALL of you!!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/12/2010 7:32 PM (GMT -7)   
Danser, I thank you for all the info and am definitely ready to look at your links.  I do fear that the list of symptoms is going to include many of Lyme and Babs.  Caldonia Sun, thank you for the MD Junction -- may take me a abit to get into that, but I will definitely go there THIS week.
 
Vicparis, I will save your email address -- thanks for including it.  I think I've got a lot to look at before I get to that point. I calmed down a LOT today (had to!) and wonder if I have overreacted -- even tho I still feel it.
 
I do want to ask you this, Vicparis -- You said to not save samples for Drs. I am assuming you mean the 'fibers' that come out?  I have tried to examine some of my sores and what looks like tunnelling in my ankles and feet carefully and I have not seen anything like any kind of fibers, or anything coming out of anywhere.  Also, I noted that I do not have these issues in the most likely places for Morgellons.
 
So again, maybe I am overreacting and misdiagnosing (you might too, if you saw my legs, ankles and feet), because I have seen nothing like fibers coming out of anywhere.  And I don't quite understand this part of the phenomenon.  From where do the fibers come? When people talk about pulling them out, from where do they pull them?  Is this something I can try to find on my own, just for myself?
 
One more thing:  Does the 'crawling' feeling come and go? 
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/14/2010 9:22 PM (GMT -7)   
Vicparis, I said that I would save your email address regarding Morgellon's -- which I believe you posted on this thread -- but I hadn't saved it yet. I just came back here to email you and your email addy is no longer here. I have only a couple of questions on this and would like to email you if possible.

OR, if you prefer, you can email me: bwtoto @yahoo.com (close the space) OR, if you prefer, let me know and I will post my questions here.

Please?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


rosesinjanuary
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Date Joined Oct 2007
Total Posts : 748
   Posted 7/15/2010 6:51 PM (GMT -7)   
My brother has Morgellons
My two other brothers have lyme or one has lyme and the other has MS
I have lyme unless now it is politically correct to call it fibromylagia
My face is on fire, it has been a very bad day.
My period brings all lyme symptoms to a huge pinnacle,

+Lyme
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Date Joined Apr 2009
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   Posted 7/15/2010 9:32 PM (GMT -7)   
I am very sorry to learn this, Roses.

I must ask about your brother w/ Morgellon's --- how does he know that he has this -- does he have a Dr's diagnosis or does he know from learning about symptoms.

My real question is on the fibers ---- exactly WHERE do they come from? HOW do you go about pulling them out, or viewing them, etc?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


allieann
Regular Member


Date Joined May 2010
Total Posts : 116
   Posted 8/31/2010 8:49 AM (GMT -7)   
Skin issues, Morgellon's and Lyme--another tick-born disease?

2009 Morgellons Conference Held in Austin

by Harriet L. Bishop

The Second Annual Morgellon's Disease Medical Conference held Saturday, April 4 drew doctors, researchers and patients from 19 states and Mexico, ranging in age from 4 months to 80 years! The Westoaks Baptist Church at 2900 W. Slaughter Lane in Austin was the venue for this medical conference which announced results of recent research that shed some light on this mysterious illness that affects systems throughout the entire body, often but not necessarily presenting with unhealing skin lesions. Persons affected are generally those who have had contact with soil, such as farmers and gardeners, or those who have had contact with dirty water, as in hurricanes and flooding. Evidence was also presented suggesting that Morgellon's may be another of the tick-borne diseases, as over 40 different bacteria and parasites have been known to be transmissible by the bite of a single tick. Infected deer ticks are widespread throughout North America.


The common plant bacteria Agrobacterium tumefaciens which causes gall disease in plants is implicated because DNA has been found in skin lesions of some patients, but the results remain inconsistent, suggesting that more research is needed. It is believed that this is the first time a plant bacterium has been known to cross from the plant kingdom to animal kingdom to infect human beings.


Featured speakers were experts in the field who had come from both US coasts as well as the heartland to present their findings. The disease appears to be more prevalent in states with seacoasts, such as California, Texas and Florida although cases are found in other states as well.


Lyme disease is believed to be a precursor to or co-infection with Morgellon's disease, as 97% of Morgellon's patients also test positive for Lyme disease. The most effective treatment at this time for this little known illness is to treat for the underlying Lyme disease, a process that may involve taking various antibiotics in combination for a period of years. Body systems are protected from adverse effects of prolonged antibiotic treatment by careful administration of milk thistle (silymarin), several types of specific probiotics, monthly lab work and frequent examination by the medical professional.


The Charles E. Holman Foundation, based in Texas, is committed to public education and research of Morgellon's disease. Principal Investigator Randy Wymore, Ph.D. conducts research at Oklahoma State University Health Science Center. On the Charles E. Holman Foundation website www.thenmo.org more than 20,000 households currently report being affected by Morgellon's disease, which remains a medical mystery. Stay tuned!

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 8/31/2010 9:02 AM (GMT -7)   
I first heard about Morgellon's Disease on an episode of Discovery Health's Mystery Diagnosis (I believe you can watch back episodes on their web site). I have seen it mentioned several times since on different message boards, too. The bottom line is that it's extremely controversial, very hard to get help for, and very little is known about it at this point.

Learn all you can about it - I know there are advocacy groups and people who are trying to get more research and education done...it's just a matter of tracking it all down.

Good luck to you and I hope you find the help you need.

Post Edited (madrivergirl30) : 8/31/2010 10:09:39 AM (GMT-6)


vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 8/31/2010 9:34 AM (GMT -7)   
I sent you an email with my contact info.
 
I didn't have fibers or lesions at first - mine started by my itching from my head to my toes - for months. It was hell. I was also dealing (and not being treated at that time for chronic Lyme). Then I started breaking out in lesions. One night I was volunteering at a Woman's center, and I picked up a piece of lint, which I thought was cat hair. This is going to sound crazy, but it seemed to move. I dismissed it - oh I imagined it. Then when more lesions broke out, I noticed weird things poking out.
 
The fibers usually come out of the lesions - I don't pull at them - it will make you crazy. It's bad enough that you have sores all over your body and can feel "things" moving under your skin. I am being seen by a Morgellons specialist.
 
Cindy Casey (The Charles E. Holman Foundation) has done so much for those with Morgellons. She also has the disease you can read her diary on the Charles E. Holman Foundation website.
 
There are a lot of people on the Internet trying to sell things (just like they do with people suffering with chronic Lyme). There's also a lot of misinformation.
 
Victoria

Post Edited (vicparis) : 8/31/2010 10:56:18 AM (GMT-6)


rosesinjanuary
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Date Joined Oct 2007
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   Posted 9/1/2010 10:30 AM (GMT -7)   
dear lyme +
 
My brother has the fibers coming out of him. Lots and lots of fibers. he tried a lotof things but a homeopathic doctor has helped him the most. i can call him and find out what he does take and do if you want me too. He is finally better. hang in there it might not be morgellons!!  lisa Razzle was correct in her info she gave you. some think it is lyme related some think not..  the cdc is supposed to be researching it. At this point they do not understand it and some drs have suggested psychological but trust me his is not psychological it is very obvious to any naked eye.

vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 9/1/2010 1:43 PM (GMT -7)   
I definitely think it's Lyme related. The CDC gave the research contract to Kaiser - who have been telling people for years that they're delusional. They're going to have a lot of law suits on their hands if they decide it's actually a disease. That will happen after mainstream doctors recognize chronic lyme. Progress is being made, but it's really slow - we're losing people.
 
Victoria

Simela
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Date Joined Aug 2010
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   Posted 9/1/2010 7:38 PM (GMT -7)   
+Lyme:

I don't think anyone here thinks you are a freak! I am so sorry you are going thourgh this! I also think is Lyme related and I also think that for people that had lyme for a long time, like yourself, it can take other forms, mix with other bacteria, evolve into unknown species. This is just pure speculations, based on my reasearch and how incredible this disease is--nothing surprises me anymore! It may be a strenght they have not discover yet OR they know about it and they won't tell us! You are so brave to have dealt with this for sooooooo long, hang in there, we are here if you need support or someone to talk to. I for one, feel very lonely because I can't really talk to anyone about this--they don't understand it. If you need someone to talk to, you can email me, ok?

One thing I wanted to ask is:
How much antibiotics did you take over time?
Do you still have lyme symptoms?

Take care of yourself and stay positive and calm. Try to find support for this condition and talk to other people that has it and you may find out what works for them.

Lots of hugs()

+Lyme
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Date Joined Apr 2009
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   Posted 9/2/2010 7:43 AM (GMT -7)   
As always, thank you everyone for all of this.  And Vi, thanks so much for the emails!
 
I'm thinking I completely overreacted that day-- as most of us do from time to time. I do have lesions all over my legs -- I think they have improved some w/ abx, but not sure, because a few are still sores. They do not always itch and the itch is not severe. I still have creepy crawly feelings in my feet that sometimes go a little ways up my ankles and legs. And I do have strange ridges and burrows in my feet that seem to be coming and going.  Also strange purple and red squiggle marks from ankles, down into feet.
 
LLMD did not believe my this or the  sores are due to Lyme. I don't know why -- because I never had them until after the tick bite. And they just started out as red spots, only turning into sores this past year.
 
But I see nothing appearing to be any kind of fibers. My eyesight is not good, but I have studied one sore on my thigh (closest to my eyes) and see nothing weird about it, except that who knows what it is.
 
Still, this is a thread I am definitely saving. You all have provided so much more info than I found in my 'research'.  (in fact, my 'research' took me to many gross places about worms and nematodes, and supposedly a large percentage of people have worms they don't know about. Nice, huh?)
 
God bless you all and thank you again for so much information. Surely this is something they can figure out if they try!  Would seem that if it is at all Lyme related, studying some ticks would be in order, not just patients.
 
Researchers should start dissection ticks by the thousands and publish every single bacteria, protozoa, and parasite they find!  Anyone think they are??

Post Edited (+Lyme) : 9/2/2010 8:58:55 AM (GMT-6)


vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 9/2/2010 8:02 AM (GMT -7)   
thank you for the link to MDJuncton Caledonia - I'll check it out this morning.
 
Victoria

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/10/2010 12:34 AM (GMT -7)   
I just read that Morgellon's is included in the list of co-infections - see "It's All In Your Head - Around the World. In 80 Lyme Patients Stories" (book two) by PJ Langhoff (bottom of page 3). If you haven't read this set of books, I highly recommend them. Out of all the many books I've read, I've found these to be the most personal and meaningful.

+Lyme
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Date Joined Apr 2009
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   Posted 9/10/2010 6:24 AM (GMT -7)   
Thanks again everyone. I've gone a little psychotic over this stuff -- esp since reading about Morgellon's. Again, I have the sores, only on my legs, and I have creepy crawlies in my feet, now moving up my legs and this morning felt them (more like twitches) in one buttock. I have strange squiggles down into my ankles and feet and long burrow (or under skin tunnels) looking things in my feet, which come and go, along w/ lumps that could be varicose veins.

But I have never seen anything like fibers, even picking at my worst sore.

So I don't know that this is Morgellon's. However, if it is, I believe I will eventually know.

IN researching all the gross red and purple veins in my ankles and feet -- from dark purple and some black spots, so numerous it looks like bruising, I believe I have vasculits. Been researching the viruses I listed in my signature, and I believe this was one of parvo's symptoms.

I plan to go over all these viruses w/ my Dr when I ever get to see him. Meantime, by mail consultation, I am working on an LDN script, which he is willing to prescribe provided I find the compounding pharm to fill it.;

For those of you who have tried it or are trying it and experiencing no improvement, I found this on their web site: Do NOT use time or slow release LDN -- it does not work the same and is not effective. ALSO it MUST be a lab that properly compounds this and provides the highest quality. I read testimonials from folks in the same family using it w/ wildly different experiences and come to find out it was the pharmacy.

This little piece on LDN is a bonus item here! I am definitely goint to try this -- the testimonials and info is stupedous. Maybe more people will want to look into this. And I will let you now my experience.

Thanks again,
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 9/10/2010 11:32 AM (GMT -7)   
I didn't have fibers in the beginning and really seldom see any now. Mostly I itch from head to toe and now have lesions (which I also didn't have in the beginning). I'm not a doctor, but I found that doxepin really helps with the itching although I take only when needed, not daily. The detox bath for Lyme helps as well.
 
I mainly focus on not thinking about the creepy stuff and just tell myself I have Chronic Lyme - otherwise I'd go nuts. They don't know what causes it, there's very little money for research, so it's going to be very difficult to find "the" cure. Hang in there - maybe it's not really Morgellons and if it is, you'll handle it just like you do the Lyme. Did you know Joni Mitchell had Morgellons?
 
Many good thoughts being sent your way,
 
Victoria

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 9/10/2010 4:33 PM (GMT -7)   
I have done some research on morgellons and it's just a name some lady named Mary made up in 2002.  From my research morgellons does exist as far as the itchiness, skin problems, etc.  If there are fibers I think they are toxins, just my opinion as well as the other "symptoms"..   It just amazes me how many problems toxins cause..  More than anyone can ever guess (including me!).
 
 
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)
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