New but clued up

[skullgirlboo]

Hey im 23 and from England.

self diagnosed Morgellons- however i have a docs app today, but i have little faith in him as he disregards CFS as an illness and i had to explain what 'Lymes' disease was over the phone.......

Basically this nightmare reached a peak about 3 1/2 weeks ago for me-thats when i woke up and actually realised *I* was making the fluff not cheap socks.

I am not really getting anywhere, i have found a private doctor but it will be £100. ($156) for a 30 min phone call, then an 45min appointment would be £125. ($195) and that means travelling from London to Bolton which would take 6 hrs and cost another 100 quid plus there is the follow up app 6 weeks later at another 125 quid so overall for 30 mins on the phone and 1hr 30 mins with Dr Wright we are looking at around £600 0r $940.

I am more mad then sick right now.

i must say tho soluble vitamen c tabs all the way! if you are going to take meds crush them and take them in a drink as u loose around 50% of pills through digestion- sorry if you already know this.....

Anyway hello, here i am all mouldy and furry

[Bee]

Hi skullgirlboo, White fuzz balls were my first clue. I googled it and found out.
My white fuzz seemed to come from my ears mostly.Till I put Neem Oil in a few times. Then it stopped. Now I only see it about 5 minutes after I get out of the shower, on my face.The only place I get lesions.

[Sadsack]

skullgirl -

Why on earth would you spend all that money and drive all that way to see a doctor who doesn't believe in CFS and doesn't know about Lyme? Your chances of having anything productive coming from that meeting is nil to zilch!

SS

Originally Posted by skullgirlboo

Hey im 23 and from England.

self diagnosed Morgellons- however i have a docs app today, but i have little faith in him as he disregards CFS as an illness and i had to explain what 'Lymes' disease was over the phone.......

Basically this nightmare reached a peak about 3 1/2 weeks ago for me-thats when i woke up and actually realised *I* was making the fluff not cheap socks.

I am not really getting anywhere, i have found a private doctor but it will be £100. ($156) for a 30 min phone call, then an 45min appointment would be £125. ($195) and that means travelling from London to Bolton which would take 6 hrs and cost another 100 quid plus there is the follow up app 6 weeks later at another 125 quid so overall for 30 mins on the phone and 1hr 30 mins with Dr Wright we are looking at around £600 0r $940.

I am more mad then sick right now.

i must say tho soluble vitamen c tabs all the way! if you are going to take meds crush them and take them in a drink as u loose around 50% of pills through digestion- sorry if you already know this.....

Anyway hello, here i am all mouldy and furry

[tcmgpt13]

Evidently Dr. Wright does believe in Morgellons, surely a big requirement for treatment of Morgellons SS? There are UK members who have seen him and gotten some understanding, support and help from him. SGB, you might want to ask if he gives any discount to those who have less money than others or he may even have some sort of payment plan (there are some doctors in the US who do this and usually it is offered through a third party, sort of a mini loan you pay back over time). Some alternative doctors will do this, but you never know unless you ask.

You may also want to read this thread SGB where there are additional lists of doctors for help including one UK site (Biolab) which lists doctors who might be a bit more open to more alternative type treatments in the UK. On this thread there is also one post which deals with finding naturopaths (including UK), another option:

Finding A Doctor To Help

Good luck to you. I hope you find some help soon.

[gigi22]

Hey Skullgirl.. does this doc practice holistic medicine? My first doc to help me with this was a naturopathic doc. She helped me sort out what supplements I should be taking and in what dosages.. it really helped get my healing going in the right direction. Nutrients are sooo important in healing.. your body cannot heal if its not getting the right nutrients. Skin treatments will be just temporary if you don't heal from the inside as well and prevent regrowth of fungus or whatever else on your body.....

I found that I had yeast plus a mold/fungal infection in gut, along with some overgrowth of pathogenic bacteria... this caused me not to absorb all the nutrients I needed when taking in pill form. I have been status quo for the last few months.. not getting worse but not getting better either. We just discovered that I needed more zinc and have a severe B12 deficiency (my body tissues has no trace of B12 in them!)... Well... I've now been taking the B12 shots and upped my zinc, and now I'm going through a healing crisis... I'm more itchy and there more black stuff purging from my pores... but I am seeing improvements in my skin .. I think! ... anyway.. hang in there ..

[Sadsack]

TCM -

Sorry - I didn't read the name "Dr. Wright" anywhere. I wouldn't have recognized the name, anyway.

Why is skullgirl saying (in the shout box) that she is going to drop the b and tell him she has Morgellons (self-diagnosed) if he already believes and supports?

It also seems odd that he would believe in Morgellons, but not in CFS or know about Lyme.

Not being argumentative here, just seeking clarification.

SS

PS - is the reference to Dr. Wright in another thread?

[tcmgpt13]

SS, I don't know. Perhaps the doctor she is seeing today is not Dr. Wright. That is the only way that saying she was dropping the M b omb could upset a doctor, and that would be if he was a doctor other than Dr. Wright. Perhaps she will clarify later?

I have also never heard that Dr. Wright does not believe in CFS. It would be strange, would it not, if he were treating Morgellons, not to believe in CFS? And not know about lyme when he knows about Morgellons seems a real stretch.

This is the paragraph from her first post here on this thread which mentions Wright:

"I am not really getting anywhere, i have found a private doctor but it will be £100. ($156) for a 30 min phone call, then an 45min appointment would be £125. ($195) and that means travelling from London to Bolton which would take 6 hrs and cost another 100 quid plus there is the follow up app 6 weeks later at another 125 quid so overall for 30 mins on the phone and 1hr 30 mins with Dr Wright we are looking at around £600 0r $940. "

[Sadsack]

Duhhh...how'd I miss that?? Lol.

Going a thousand miles an hour this morning, so angry about so much having to do with Morgellons. I'm just hoping this doctor hasn't decided that there's a buck to be made exploiting Morgellons suffering, and not really a believer.

I am thinking about a doctor in California who "set up" a clinic this past year. He is a doctor who is having a hard time making a living, and put up some ...ahhh....shall we say "misinformation" about his background in an effort to lure in patients. He was outed within a week and the site came down.

I guess that's a new form of financial exploitation we have to watch out for - incompetant doctors pretending to believe in Morgellons in order to get patients. Especially when they charge outrageous fees on a "cash only" basis. Kind of like the weight loss doctors who are a front for writing amphetamine prescriptions with nothing else to offer for weight loss.

SS

[tcmgpt13]

Well, in some ways, it is hard not to get angry about Morgellons and this disease and what unscrupulous people try to do to us. Anger is coming from the liver according to TCM, so that is why I am fairly sure that this stuff settles in the liver as M does generate anger issues in many of us.

I do not think Wright though is in the category of taking advantage of those with Morgellons. There were discussions of him earlier by some UK members (not always did they mention his name at that earlier time, to protect him I am sure--he is one of the doctors on the Biosetlab list though so I worry less at this time about mentioning his name) and he sounds okay. He evidently worked with Harvey at the beginning and actually is a friend (believe at some point they studied together). So I think that he is all right and quite sympathetic to those showing these symptoms. Hopefully this reassures you about him. As far as I know he was (is) following the guidelines set by Harvey.

It is too bad there are always vultures out there willing to prey upon the vulnerable and desperate. Unfortunately this type of scamming is as old as mankind. Meanwhile I also hope you take comfort in the fact that you are doing your best to help others both here and in the support group you set up. It is one way to fight against that which is bad in the world and it seems to me you do that quite often with a good deal of sympathy towards others who are struggling with our symptoms.

tcmxxx

[Sadsack]

Thanks, TCM -

I do hope that my efforts yield some positives in this M-mess. I feel helpless a lot of the time, especially when talking with "new" people (THREE IN TWO WEEKS right in the general Tampa region!!). But I am getting more sure about what to recommend as time goes on and I see that what seems to work for me also works for others.

The apprehension I voiced about Dr. Wright was off the top of my head and not based on anything, really, except the Lyme/CFS issue, and the statements by skullgirl re: dropping the M b. If I'd known anything about him in advance I probably wouldn't have brought it up.

I really, really try not to jump to conclusions about anything. I need a lot of evidence before arriving at a firm opinion.

SS