Potential Morgellons

[rleonard]

I just finished watching the Discovery Health Channel program tonight at 8:00 p.m. (December eight - episode called "Nothing to sneeze about") and all the symptoms of Morgellons disease sound like what my brother is currently going through. We are waiting for the results of a lymes disease test that is due in this week. He has been suffering for months with these strange sores that appear all over his body and itch terribly. He is currently full of these sores on his scalp is literally bleeding from these sores. This is the first site I found about this disease. He has had a few ticks bites over the summer and lives in the northeast where ticks and lymes disease is prevalent.
Can anyone either direct me to more medical information regarding this disease, it's diagnosis and treatment. The Mystery ER program mentioned a nurse practitioner in Texas who is an expert on this disease. I appreciate anyones help. Thank you.

[carla]

Hi Rl,
Sorry about your brother. It does sound like Morgellons .
One of the other members can tell your more about the nurse practioner in Texas.
Personally I would avoid Doctors and concentrate on building up your immune system in the most natural ways possible.
At least until there is some proper research done .
carla

[Sadsack]

Dear rleonard,
I am so sorry about your brother. He is very, very fortunate to have such a caring sibling. - bless you.
Ginger Savely is the Nurse Practitioner and has moved her operation to San Fransico, I believe.
I would recommend you go to: Morgellons.org for more information. I would also urge you to register with them, as tracking rates of occurrence is an important function that they perform.
I am pleased that the show "String Theory" was instrumental in getting you here. I had high hopes that it would reach a lot of people who didn't know where to turn and didn't know what was wrong with them.
The woman featured on the show is Cindy Casey, and she is a moderator on another forum called Morgellons Sanctum. I would recommend that forum as a starting place in terms of treament and support. Different forums have slightly different "angles" and some do a lot of speculating about what is causing this, and it is too soon for you and your family to be focussing on that. You need to start helping your brother to get better.
Curious - are you from CT? I lived very close to East Lyme some years ago...
SS

[kmar]

Originally Posted by rleonard

all the symptoms of Morgellons disease sound like what my brother is currently going through. We are waiting for the results of a lymes disease test that is due in this week.Sounds like you have accomplished more than many here since your doctor is testing for Lyme.

Be glad for that, and your Doctor must really be hearing you and up to date on the increasing problem of Lyme disease.

Keep doing what you are doing cuz you are obviously doing something Right to get good medical care!



He has been suffering for months with these strange sores that appear all over his body and itch terribly. He is currently full of these sores on his scalp is literally bleeding from these sores. Sorry to hear he is bleeding, most do not complain of bleeding. But that is not to say that some may bleed .... ... unfortunately the "bleeding" allows many Physicians to assume we are picking and sends a negative signal. SO GLad most don't bleed.



The program mentioned a nurse practitioner in Texas who is an expert on this disease. I appreciate anyones help. Thank you. I know many who have spent lots of money on the Nurse practioner, many have told me that she has cut them off when the money stops coming. Just what I have been told and would hate for that to happen to your brother.

Totally agree with Carla's advice and avoid the doctors and build your immune system up.

If your brother tests positive for Lyme, go ahead and take the Antibiotic therapy offered and be very glad for that!

Like I said, unfortunately most are not given the amount of medical attention that your MD has already given him by "THINKING" of Lyme and testing for it.

YES, you MUST be doing something right and keep it up!

For resources, they can be found all over the internet. Be careful and wise.

..... most go to www.morgellons.org as posted by Sadsack as a good reputable resouce. ( they have the most current research and recently started the Phase II for one of their studies, however; they have more ongoing research at various Universities ) there is another morgellons group, but I am not sure if they are still operating since their website has such old references and no information on current research.


Is this the Discovery program that you saw?
http://www.youtube.com/watch?v=-TV591RHbew

Wish you the best and do come back, there is alot of friendly people here and some good advice!

Keep strong for your brother's sake. He is very lucky to have such a caring sibling.

Sincerely,

Kmar

[kmar]

Too bad that Morgellons episode didn't air on a National channel. Not alot of people have that "premium channel".

I was finally able to see the show on Youtube.

I just love YouTube cuz I don't have cable TV and it has so much to watch there.

[kmar]

rleonard,

Are you out there? Please do come back and let us know if your "brother" tested positive or negative for Lyme.

Just remember, things will have to get better for us and hang in there.

Kmar