Babby

[beholtan1]

Hello everyone, I've had Morgellons I believe for some time now. Have been reading this website trying to gain information and understanding. Starting to feel like a leper so it's time to get some support for myself from people who know how I feel. A doctor told me verbally I have it but cannot seem to save up the money for the blood work to confirm it.So question 1 is does anyone know the mininum blood work to confirm you have it. I have also been trying to get in touch with Trisha Springstead but I don't know how to reach her. Trisha if you see this emailplease call me at 727-563-5704 I have some items that I would like to talk about. If anyone knows when the next Tampa support meeting is please reply. thanks everyone for the support you have already given me by reading your material.
Regards, Barbara

[scabdraggr]

the support,info,direction,compassion and care that you need is here for you at mdr so please stay with us and allow us to help you with what your needs are.Drs can't diagnose or treat this for some time so don't waste time or money as you will need both.

[MeaganM]

There isn't a blood test for Morgellons but many doctors believe that it is caused by Lyme disease. A typical Lyme WB at Lab Corp is not very expensive but not very accurate either. Most people get tested at IGENEX but it costs around $200. If you don't have the money, the Lab Corp test would be a good place to start.

Was it a Lyme Doctor who confirmed your diagnosis of Morgellons? Most of us have not even found a doctor who knows what it is never mind diagnose us.

[scabdraggr]

A diagnosis is hollow without the dr being literate about M and how to treat it as they are not allowed to treat anything that isn't in their medical records.The med files computer system doesn't have M as a disease so it cannot be diagnosed as a disease for the patient.Recognition and documentation is a must for the drs so that they are allowed to treat us as for now they can't and money given to them is a waste of good money that needs to be placed elsewhere.Lyme is not a part of M so please everyone stop asserting such a giant claim that no one can back up as it isn't correct.Neither are many other disase claims that are made when one tries to get help for M,which stands alone but has psuedo characteristics of other diseases.It's kinda like this lf has a pocket book full of these tricks from it's taking up of dna from many places.Confusion only adds to the pain and suffering.

[tcmgpt13]

I do not believe that those of us who have been diagnosed with other infections are saying that those infections describe all of our symptoms. And yet, with so many being diagnosed with lyme, it is very possible lyme has a huge part in inviting whatever M is into the body and inviting it to take up residence in the body. It may take a certain degree of ill health and/or genetics for M to make us sick. In fact it may even determine the degree of ill health we suffer (read what Dr. Fry said about genetics etc in my post about him from yesterday).

Yeah, documentation is necessary and that's what I believe some doctors who treat M patients are doing when they test for various KNOWN infections. Do you think that these practitioners should forget about all the accompanying M co-infections? Pretend they are not there by ignoring them and leaving them untreated? In hopes that the M infection will improve serendipitously all on its very own?

Even if it is definitely proven that M is caused by an as yet unidentified parasite, leaving accompanying infections untreated will only encourage them to spread in the body even more. It is now becoming known in other parasitic diseases like leishmaniasis that quite often those parasites work in tandem with other disease organisms. In the case of leishmaniasis it is in tandem with an as yet unidentified viral infection. This is even beyond even just symbiosis for in this case their co-operation is not beneficial to the host in which they have parked themselves. Patient genetics and the degree of patient health issues are also related to why some of those patients get cutaneous lesions or go on to the more deadly form called visceral leishmaniasis.

All I can say from my own experiences with some fairly potent drugs recently is that I am having far fewer M symptoms now, less skin debris and I am at least now able to function more normally from day to day with far more mental clarity. Before total exhaustion was a big part of my life. I am not totally back to normal but feel a good deal better than I did, thanks to some medications which may not exactly treat M directly but appear to be slowing it down a great deal.

I feel that those who claim everything doctors do is bad/wrong/hollow also add to some people's prolonged suffering. For three years I stayed away from doctors and despite all natural treatments I tried I continued to spend a lot of time in bed. It was only by deciding to try a new direction that I have finally achieved some more dramatic improvement.

quote=scabdraggr;88663]A diagnosis is hollow without the dr being literate about M and how to treat it as they are not allowed to treat anything that isn't in their medical records.The med files computer system doesn't have M as a disease so it cannot be diagnosed as a disease for the patient.Recognition and documentation is a must for the drs so that they are allowed to treat us as for now they can't and money given to them is a waste of good money that needs to be placed elsewhere.Lyme is not a part of M so please everyone stop asserting such a giant claim that no one can back up as it isn't correct.Neither are many other disase claims that are made when one tries to get help for M,which stands alone but has psuedo characteristics of other diseases.It's kinda like this lf has a pocket book full of these tricks from it's taking up of dna from many places.Confusion only adds to the pain and suffering.[/quote]

[annesco]

In all fairness and in defense, ScbD,

Many have found some significant relief from treating for Lyme symptoms, so who can blame them for continuing to do so? There are undeniable synergies between the two. Certain antibiotics, like the doxycyclene are widely used in Lyme treatment, and I myself have enjoyed some relief in its use. Other aspects like antifungals have worked for some, and are incorporated by some in addressing lyme as well.

We are all still floundering around in the dark, poking with sticks to try to find the right answer. And in the meantime, if something helps to provide any degree of relief, then why wouldn't they pursue it?

I do agree with the general assessment re: most doctors and especially dermatologists, both of which have been a sore disappointment to me; a useless script for prednisone and a lecture on hysterics did nothing for me at all. Don't throw good money after bad, folks. Try to find something that works based upon results posted here, and upon your own, solid and extensive research for now. There is progress being made and wheels being turned by some here, which will hopefully yield very significant outcome soon.

I am happy to share what is/has been working well for me if you would like, and can be PM'd if you would like to know more detail. Otherwise, good hygiene, good diet, supplementation as needed, open minds, courage and faith with a nice portion of prayer thrown in if you're so inclined, will do us well...

Originally Posted by scabdraggr

A diagnosis is hollow without the dr being literate about M and how to treat it as they are not allowed to treat anything that isn't in their medical records.The med files computer system doesn't have M as a disease so it cannot be diagnosed as a disease for the patient.Recognition and documentation is a must for the drs so that they are allowed to treat us as for now they can't and money given to them is a waste of good money that needs to be placed elsewhere.Lyme is not a part of M so please everyone stop asserting such a giant claim that no one can back up as it isn't correct.Neither are many other disase claims that are made when one tries to get help for M,which stands alone but has psuedo characteristics of other diseases.It's kinda like this lf has a pocket book full of these tricks from it's taking up of dna from many places.Confusion only adds to the pain and suffering.

[MeaganM]

Scab, I respect your opinion and cannot wait until you release your findings. But, since M has many of the same symptoms of Lyme, I think it is wise for new sufferers to rule out Lyme before going down the horrific M road. In my previous post, I didn't say that M was Lyme, I said that most doctors believe it is because there are no other answers since the CDC has refused to release their research. If Barbara got a diagnosis of M then it was more than likely from a LLMD since most GP's don't believe it exists.

Personally, I have decided to go the Lyme route (whether I have it or not) because it is something that is known throughout the medical community and if you find the right doctor, the treatment is close to the suggested treatment for M (even your suggestion) with antiparasitics, antibiotics, and antifungals... plus it is more than likely covered by insurance. Some Lyme doctors even suggest homepathic medicines on top of conventional to boost the immune system. I find this diagnosis and treatment not only easier for my family, friends, and doctors to grasp but also a better alternative to being diagnosed DOP and suffering alone with expensive self-treatments.

I understand the need to scream to the world that M does exist (and I will always do that) but until the world wakens to the possibility, getting treatment and/or a diagnosis for something with similar characteristics is the sensible thing to do in my opinion... especially if it prevents others from the pain, suffering and isolation from their family and friends such as you have endured.

[scabdraggr]

Well put ladies and I so agree with most of what was said but for the record,lyme is not a part of m,neither is hepatic fibrosis,herpes,mrca,and many other diseases that appear to be present.Lyme,especially is not a part and this confuses the process of isolating one single disease.The psuedo dna may be present for many diseases but it in actuallity isn't there.I had a leaf come out of my body but I'm not suffering from leaf disease,which doesn't exsist.After putting the leaf under the scope it was easy to see that it was M disguised as a leaf.Lyme is more a syndrome than an actual disease with M sufferers.The set of symptoms is present at times but never is the sphirocete bacteria that is the defining pathogen for M.It does good to treat for lyme as the response is positive each way,so no harm done, but the record needs to be correct.I will put up pics of the psuedo leaf later today as the memory chip is still in the camera and I have other things being photo'd.I expected to be challenged and I appreciate your doing so as many with better credentials will possibly someday challenge me and please don't perceive that statement as derrogatory about anyones credentials here on mdr as I know very little about anyone's credentials here on mdr.Steve Frey made a similiar statement about the psuedo things and I disagreed with him at the time but now I have new evidence to back up his and my statements concerning duplication of other things.I apologize to Steve and hope no harm was done.

[sammy]

Originally Posted by MeaganM

There isn't a blood test for Morgellons but many doctors believe that it is caused by Lyme disease. A typical Lyme WB at Lab Corp is not very expensive but not very accurate either. Most people get tested at IGENEX but it costs around $200. If you don't have the money, the Lab Corp test would be a good place to start.

Was it a Lyme Doctor who confirmed your diagnosis of Morgellons? Most of us have not even found a doctor who knows what it is never mind diagnose us.

I have been tested for lyme but came back neg at lab corp. but doctors that treat lyme dont have a lot of faith in these tests there are 2 good doctors in balto area for lyme but very expensive also 800 up front and then tests will be addl not prob covered by ins. sammy

[skylark99]

Welcome beholtan1, or babby, if you prefer.
Keep coming back and asking questions; I hope that you can find some answers here.
I have sent you an PM with the info you are looking for that you can access from your user control panel (User CP) clicking the link at the top left hand of any page here in the forum.

Regards to other comments:

I also tested negative for Lyme (though the tests seem controversial, those in the Uk, anyway). I may have had rocky mountain spotted fever, and was Dx as so in the 80's.

I also took Doxy for 8 months. Two weeks of grrrreat relief, followed by less spectacular response and down hill from week three onward.

Annesco, I needed a laugh today and your phrase "floundering around in the dark, poking with sticks" raised a big smile. Thank you!! That said, there is more going on by a diligent collective and we are ever hopeful.

And TC, I am well pleased that you are feeling much better, that is terrific news to hear!