I am embarrassed to say, but the rashes I began to get in February turned out to be scabies.
The nightmare only made worse by at least 4 doctors who didn't see burrows between my or my daughters fingers.
I do believe I have morgellons also, seeing that everyone else got better, but me. I also see alot of things that tap onto Morgellons.
My LLMD doesn't really want much to do with this, and I am beyond suffering. sometimes hoping if I do fall asleep, I don't wake up.
Of course, no insurance, no job, and going broke fast.
You guys are my last hope...anybody know of anyone in Virginia who can help me? I have nobody and in desperate mental/emotional state.
Please..
Posted by lymehope (Member # 48581) on :
Hi TickyTavy I can recomend a great doctor in DC if you can get there she is very experienced treating lyme and morgellons. I will send you a PM with more information.
Posted by jory (Member # 50029) on :
Hi TickyTavy,
I have morgellons too, and at the start (July 2016) I also thought it was scabies. By now you should have received a pm with a good doctor recommendation in DC, that's who I'm seeing and my new Lymenet friends got me to her for which I am eternally thankful. My story continues, but finding help from someone who truly understands tick-borne infections has really improved my state of mind. I hope you can walk the same path.
Please follow up by contacting the doctor and be sure to complete and return the new patient kit asap - it will get you an appointment. I'll also contact her directly to let her know to expect you. Please pm me your name, or if you prefer to remain anonymous I can use a safeword of TickyTavy - your choice.
Please let me know if I can help in any way, I was in DC April 24-26 and have many suggestions that will save you lots of trouble and anxiety.
Welcome to Lymenet, you're in good hands here!
Jory
Posted by TF (Member # 14183) on :
I sent you the name of a great Morgellon's doctor in D.C.
Posted by hopingandpraying (Member # 9256) on :
So sorry you are going through this.
PM sent for DC.
Read her book titled "Morgellons: The Legitimization of a Disease" which has valuable information:
Scroll down for financial help, etc., available from several sources.
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%. View on www.lymetap.com
I hope you looked at the website of the doc I recommended to you.
Here is a service she offers to Morgellon's patients:
"Morgellons patients: If are suffering from what you believe to be Morgellons disease symptoms you may also ask your primary care doctor to email Dr. S at [email protected] and ask for her Morgellons treatment protocols.
These will be sent by return email and there is no charge for this. We will only send these directly to a health care provider when specifically requested by them. We will not send this information to patients."
You may want to take advantage of this. See if your primary or lyme doc will take her up on this offer. I hope so.
Posted by jory (Member # 50029) on :
Hi TickyTavy,
We're a concerned bunch here, please check in and let us know you're okay and reading our posts.
Stay strong, there is no embarassment on Lymenet and we *all* understand what you're going through!
Jory
edit: for notifications, wasnt getting them
[ 06-04-2017, 02:59 AM: Message edited by: jory ]
Posted by TickyTavy (Member # 50039) on :
Thank you, all!
I had also reached out to ILADS, but haven't received any info, yet.
I have a LLMD that I have been using for years,but since this, it appears she doesn't want much to do with it.
I will try to contact the doc in DC
Posted by TF (Member # 14183) on :
Good to hear from you. Perhaps your primary doctor would be willing to write to Dr. S and ask for her Morgellon's treatment protocol. See what I wrote to you above.
Some of the things can help you with symptoms immediately if your primary doc will just write you the necessary prescription.
This way, perhaps your primary could help you out while you wait to get in with a great Morgellon's specialist.
Regarding the ILADS doctor referral service:
I am assuming that you (and a lot of others) do not know how the ILADS doctor referral system works.
It's no good!
See what I wrote to another person who had the same idea:
Requesting a list from ILADS is a bad idea. Did someone here tell you to do that? They just send out the name of any doc who has registered with them saying they treat lyme. So, the doc may have never treated a lyme patient in his life. Doctors take advantage of the ILADS referral service to get themselves some patients!
If you act on the names they send you, you will regret it.
I have been helping people find good lyme doctors for 13 years. I know what ILADS does. They do NOT know these doctors.
So, they will send you the names that are closest to your location.
See this recent thread regarding the ILADS doctor referral service. "Spiffy" says on May 9 that he is waiting for names from ILADS. Read what a number of folks here said to him regarding that service:
It's not the way to go.
Posted by Tincup (Member # 5829) on :
Hey to you in Virginia!
If you go to www.VirginiaLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".
Click there to find the names and contact information for health care professionals treating Lyme & TBD's in your state (or any state).
There is also a page with support group information, one for alternative medical professionals, educational conferences across the country, labs and their contact information, one for mental health providers, MTHFR and Morgellons providers.
There is also a list of TBD with how to diagnose (testing), a list of symptoms for each disease and treatment info with links to the treatment guidelines.