I will travel anywhere to see any lyme-literate morgellons-literate doctor who will quickly see me, do my igenex tests, and where applicable, put me on treatment. I am in constant agony and none of my efforts have been helpful. Having lyme and/or morgellons is a death sentence in Canada.
Please help.
Jory
edit: typos
[ 03-27-2017, 06:18 PM: Message edited by: jory ]
Posted by lookup (Member # 44574) on :
Hi Jory, You could try Dr. S.
She is in Washington DC and specializes in both Lyme and Morgellons.
She wrote a book called Morgellons: The legitimization of a disease: A Factual Guide by the World's Leading Clinical Expert
Best of luck to you!
(Editing last name of practitioner)
[ 03-27-2017, 06:47 PM: Message edited by: Robin123 ]
Posted by jory (Member # 50029) on :
Thanks lookup, but her website says that she's not accepting new patients. I remember the day her book came out, and Amazon is still pressing me to buy it.
Just did.
Posted by lookup (Member # 44574) on :
Hmm, I wonder if she has any trained colleagues she can refer you to?
Posted by jory (Member # 50029) on :
Good idea, I sent her a message.
Posted by lookup (Member # 44574) on :
Fingers crossed!
Posted by TF (Member # 14183) on :
jory, her website says she is not taking new patients, but the truth is that she will take a few per year. I got at least 3 people in with her last year.
I advise you to write to her and tell her about your case and how desperate you are. You can also set up a telephone consult with her. My folks did that and she decided to take them as a patient as a result.
You would be in top notch hands with her and you would love her!
If she sends you a questionnaire to complete before the consult, do it immendiately and send it back. Then, you will get a date for the consult within the next 2 weeks generally.
She will not recommend any other doctors to you. But, if you want a lyme doc who can see you quickly, let me know. I do not believe he is Morgellons literate, but you could always check out his blog to find out or call his office.
There is also a good lyme doctor near you (right across the Canadian border) but she has a 3 month wait to see a new patient. If you want her name, let me know. I do not know how much she knows about Morgellon's. Believe me, you can probably count on one hand how many lyme doctors there are who also know how to treat Morgellons.
But, perhaps a good lyme doc would consult with Dr. S if you became their patient. I think Dr. S. would be glad to do that! And, I think the 2 docs I am telling you about would be glad to consult with her.
Let me know if you want the names.
Posted by jory (Member # 50029) on :
Thanks TF! I know of Dr. M across the border, I contacted her in January and again today to see if she had any experience with morgellons. When I got home from being unable to fill my blood tests for igenex I got desperate as the last tylenols wore off.
Dr. S wrote back to me right away and I sent her a summary of the situation. I can only hope to find the help I need.
Thanks again TF and lookup!
ps: Where is your LymeMD friend located?
Posted by lookup (Member # 44574) on :
It sounds like it will work out! Hang in there!
Posted by TF (Member # 14183) on :
Very near Washington, D.C.
Posted by TF (Member # 14183) on :
jory, so is Dr. M experienced in treating Morgellon's?
Posted by jory (Member # 50029) on :
I didn't hear back from Dr. M today, maybe tomorrow. Her staff was very communicative when I was last in touch with them.
I filled out all the paperwork for Dr. S, just trying to get a grip on costs and timings. Fingers definitely crossed, I'm ready to make the trip as soon as I can.
Posted by TF (Member # 14183) on :
She especially likes to take patients who have had no prior treatment or inadequate treatment.
Also, I suspect that she will want to try to take you because you have Morgellon's.
Posted by jory (Member # 50029) on :
Thanks for the encouragement! Posted by hopingandpraying (Member # 9256) on :
This was over in "General Support" posted by Tincup:
Thought this might be helpful to you also. If you scroll down, you will see scientific studies and articles for you to reference, if need be.
Posted by hopingandpraying (Member # 9256) on :
Here is some more info for Canada I thought you should have:
I don't know of any LLMDs in Canada or anyone who treats Morgellons, as I was told the climate there is very bad for Lyme treatment.
"Why Can't I Get Better?" and his new one, "How Can I Get Better?" written by Dr. H, the top Lyme-literate doctor. They are an excellent source of information.
"Ending Denial (Updated in 2013): The Lyme Disease Epidemic - a Canadian Public Health Disaster" by Helkie Ferrie.
The description written about this book on Amazon is as follows:
"This book includes tips and tricks for getting treatment and testing if you live in Canada. Lyme is becoming a public health crisis in Canada. An estimated 20,000 Canadians become sick with Lyme every year, but patients are not allowed access to internationally recognized tests and are denied successful treatments.
The disease is readily treatable with conventional antibiotics, even in its chronic form. A call for action from patients, doctors, researchers, and politicians, this book contains life-saving resources with over 450 pages. It also includes access information to reliable tests for Lyme Disease not available in Canada, as well as effective treatment guidelines."
(Editing out last name of Lyme doctor)
[ 03-28-2017, 08:05 PM: Message edited by: Robin123 ]
Posted by jory (Member # 50029) on :
Thanks Hopingandpraying, I also replied to your pm. I was able to set up an appointment with Dr. S today and am very hopeful for next steps. Thanks so much to you, TF, and lookup for putting me on this new direction.
Big hugs to all of you.
Jory
Posted by TF (Member # 14183) on :
Great, great, great!!!!!!
You are on your way!!!!! I am SOooooo happy for you!!
You will LOVE her!!!!
Can you tell how excited I am? I AM!!!!!!!!
Posted by lookup (Member # 44574) on :
Yay! Onwards and upwards! Posted by hopingandpraying (Member # 9256) on :
Wonderful news! God bless you on your healing journey.
Sending hugs back to you.
Posted by TF (Member # 14183) on :
jory, I sent you lots of info on her. I hope you find it informative and encouraging.
Posted by jory (Member # 50029) on :
Very encouraging. She has already given me useful advice for coping with my palpitations, saw a local doctor tonight and was able to get a script. I will count the days until I can get help. I've been through some tough stuff in my life, but never anything as complex and serious as this.
Posted by TF (Member # 14183) on :
This is great! So, now you have already experienced her personality for yourself. Wonderful woman.
I will pray for the month wait to go smoothly.
Posted by lymehope (Member # 48581) on :
Hi Jori I am one of the patients TF recommended Dr. S and cant thank her enough. Dr. S is wonderful, you will feel you are in the best hands. Aside from being a great expert in lyme and Morgellons, she is the most caring Dr. I have been to including regular Dr.s in my whole life. She will work with you as she treats you. She will treat not only Morgellons and Lyme but anything she finds is going on in your body. This is the first time in two years I have had days where I actually feel like a normal person. She is wonderful!!! If you want any more details on Dr. S, I would be more than happy to tell you.
Posted by jory (Member # 50029) on :
Thanks for your note, lymehope! I booked everything today and it feels like the stars were aligned - I got a good deal on the flight and found another good deal on a place to stay just a few blocks away. Less travel is better.
Did you have all the tests done? I'm wondering how much time between the first and second meeting after labs are completed.
Posted by lookup (Member # 44574) on :
Best of luck to you jory! Posted by jory (Member # 50029) on :
Saw another doctor today (#17), a cardiologist referral from my last ER visit.
How is it that I feel like I'm going to have a heart attack from intense palpitations and breathing problems that continually ebb and flow, yet no doctors can find anything irregular with all their diagnostic tools? And on top of it, be so insulting.
Another waste of my dwindling resources. The last ID doctor I saw still hasnt delivered my blood test results from Feb 26. So lame I feel like filing a complaint.
In other news Dr. S's book arrived and I made my way through half of it last night. I feel less alone.
20 days and counting.. Just me ranting here.
Posted by hopingandpraying (Member # 9256) on :
Oh, I feel for you as so many have been through similar situations. Unfortunately, you have to be your own healthcare advocate. Once you are under the LL specialist's care, you'll notice such a difference!
I sent the following link to you before, but am repeating it again. Contact this center to see if they can refer you to a LL cardiologist (if there is such a person!) where you live:
Thanks hopingandpraying, it's my own fault for breaking a promise to not see any more lyme illiterate doctors.
I genuinely hoped they could do something for me today like either adjust the metoprolol I'm on, or whatever their INTUITION would lead them to.
I guess that's too much to ask. Dr. S said in her book that doctors today have a lack of intellectual curiosity, and from all my negative experiences, I totally agree.
Unless I do have a heart attack I'm going to hold out until I see Dr. S, I can't waste any more resources they are precious right now.
Thanks for replying, I had a look at the link and the pdfs.
Jory
[ 04-05-2017, 03:34 PM: Message edited by: jory ]
Posted by hopingandpraying (Member # 9256) on :
You're very welcome - glad to help. Let us know how things go.
Here is a link found on Lymenet for "Financial Help and Other 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
Btw- please don't forget to break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by jory (Member # 50029) on :
Thanks hopingandpraying, I replied to your pm.
Jory
Posted by lymehope (Member # 48581) on :
[ 04-06-2017, 09:54 AM: Message edited by: lymehope ]
Posted by lymehope (Member # 48581) on :
[ 04-06-2017, 09:54 AM: Message edited by: lymehope ]
Posted by hopingandpraying (Member # 9256) on :
lymehope - just click the pencil/paper icon, check off "Delete Post" on the left-hand side, then click "Edit Post".
Posted by jory (Member # 50029) on :
Lymehope I'm looking for your last message but can't find it.
Posted by lymehope (Member # 48581) on :
Just sent you a PM.
Posted by jory (Member # 50029) on :
I'm unable to find any financial resources that apply to Canadians. I would apply for disability, but I have nothing more than a negative ELISA test on my records here. Unless something happens I'll be entirely broke in two months.
I can't believe it's come to this, and I have "family" that refuses to settle their debts with me. I'm scouting for whatever work I can find but it's far from covering my minimalist expenses.
Does anyone have ideas?
Posted by jory (Member # 50029) on :
The pain is terrible today, my entire hip region is fully infected now. If this doesn't kill me an overdose of pain meds will.
Posted by TF (Member # 14183) on :
lymehope, I am so happy to hear that you are having good days! Wonderful!
jory, you are getting closer to your appointment with the great Dr. S! Hang in there. I will say a prayer for you. Be determined. Things are going to start looking up.
Posted by jory (Member # 50029) on :
Thanks TF, I'm determined but the pain is just awful. It's so hard to concentrate. These past two days I'm popping 400mg ibuprofen like candy. I'm just in a very dark place right now and the last person in my family who supported me has vanished from my life. This is someone whose fridge I filled when they were broke. I can't even..
Posted by TF (Member # 14183) on :
My dentist advises folks to take 1 Tylenol and 1 Advil together. It works really well. Give it a try.
The people problem is stressful and can add to physical pain. I will pray for an improved mental state. Perhaps there is a different way of looking at this that will improve mood. I pray you can get some peace about this.
Sometimes once a person gets to a doctor and the doctor validates the illness, the family comes around. That happened when I took a friend of mine to her first lyme doctor appointment.
Her husband thought she was just lazy. But, once I brought her home and said the doctor says she has lyme and babesiosis, his attitude toward her went from negative (angry) to positive.
People who don't know anything about these diseases often react like this. I went from doctor to doctor for 10 years. None found anything wrong with me. I asked my hubby if he thought I was crazy. He said he didn't know what to think but he didn't think I was crazy.
So, it is very confusing for people to decide how to view you when no doctor finds anything wrong with you.
This is all about to change! big time !!!
Hope something like this happens for you in 2 weeks!
Posted by jory (Member # 50029) on :
God bless you and the work you do TF.
Posted by TF (Member # 14183) on :
Nine days away and counting!!
Posted by jory (Member # 50029) on :
Just wanted to post an update - I'm back from my appt with Dr S, she's a lovely lady with great compassion. Today is my second day of being on meds, I picked up the full three months worth while I was there otherwise I'd have to drive to NY.
Huge thanks to everyone who has helped me get to where I am now, especially TF, lookup, lymehope, hopingandpraying, bluelyme, tincup, and wakeup. If I forgot to mention someone, please excuse the fog my brain is in right now. I can only hope to be well enough one day to do the same for others. God bless you all!!
edit: less brain fog today, added to the list of amazing people who have helped me.
[ 04-30-2017, 11:53 AM: Message edited by: jory ]
Posted by Bartenderbonnie (Member # 49177) on :
Really, really GREAT news jory ! So happy for u
Now you have all the tools to begin your journey towards wellness.
Lymenet and all its posters are lifesavers for so many. . .
They saved my life and will be forever grateful.
Please post your progress. You will be experiencing the wrath of the invaders so keep treating and never give up !
Good luck ! Healing wishes to you.
Posted by jory (Member # 50029) on :
Thanks Bonnie, your support is really appreciated! I hope your hand is healing up well.
Posted by lookup (Member # 44574) on :
That's great jory! Yay! Sending prayers your way!
Posted by jory (Member # 50029) on :
Thanks lookup!! Posted by hopingandpraying (Member # 9256) on :
How wonderful! God bless you. Sending prayers and blessings to/for you on your healing journey. Posted by lookup (Member # 44574) on :
Posted by jory (Member # 50029) on :
Thanks hopingandpraying, your pm's did me lots of good!!
Lookup, I can't express my gratitude enough to both you and TF. I feel like hell right now, but knowing that I'm on a path that leads to getting better is the hope I have so sadly missed these nine and a half months.
Posted by jory (Member # 50029) on :
Oof this herxing business is not at all what I expected. When I was on NB Protocol the effects were very unlike this.
My back and shoulders are on fire, muscle tension / soreness of the third kind. When it's strongest (usually the first 6 hours after taking meds and then slowly reducing) I can't even walk or move my body properly, I've spent the past two and a half days stuck to my bed. Woof!
I have a ravenous protein hunger (as when I was on NB) and eating 6 eggs for breakfast seems to be satiating it. Is this at all normal?
Spinach seems to have incredible effects. I'm eating readymade spinach paneer (Indian-style stewed spinach with herbs and spices, along with cottage cheese cubes) and it seems to really help my energy levels.
I'm guessing this is the Iron and Vitamin A that's doing this, and that I've become deficient in both since starting meds. I'm strong to the finish 'cause I eats me spinach I'm Popeye the sailor man!
Does anyone drink orange juice? I'm using Niacin to combat yeast but it would be senseless to consume high amounts of sugar at the same time. I'm mostly doing it for the natural source of potassium.
I have enough energy to do laundry and dishes today, I wasn't sure how long it would be but am glad to be out of bed!
Thanks for your continued support everyone.
Jory
ps: If anyone is having trouble with food and cooking as I am, pm me for a supplier of readymade wholesome vegeterian foods that only cost $2 for 300g, and take 5 minutes to prepare in a pot of boiling water. Boxes of 20 meals take up a minimal space, it's a real lifesaver. The supllier is in Canada and is still a good deal with shipping if you order a bunch of boxes.
Posted by HW88 (Member # 48309) on :
Jory, I've been following your thread. Many brilliant and more knowledgeable people have commented and given you wonderful advice.
I just wanted to tell you, I understand. Hang in there. Like, TF said, things will start looking up. Glad you were out of bed for a bit today.
Thinking of you and all my lyme friends suffering. This is a hard journey for sure.... We can do it though, right? LOL
Posted by jory (Member # 50029) on :
Thanks HW88! I'm determined, I'm determined (I keep saying that to myself as I manage the pain and contemplate various possibilities). I know I'm in good hands with Dr S and my new Lymenet friends, this place is so knowledge-focused it's very refreshing and I learn something new every day.
We can do it!
Posted by jory (Member # 50029) on :
Update: I'm now on week #6 of treatment and have seen some positive changes. My palpitations and air hunger are 99% relieved, and the fiber/crystal growths have slowed down but are still there causing pain. My biggest issues now are that remaining pain, mind blowing fatigue, muscle pain, and flu symptoms.
My dnaconnexions test results from 5/5/17 are still not in, but I tested positive for mold in my sinuses. I had my second consult with Dr S two weeks ago, and have since received my sinus spray prescriptions.
New babesia meds should be here by the end of next week and they cost an obscene fortune. I'll soon be turning tricks to pay my medical bills, any takers?
Another big thank you to my amazing Lymenet friends - you know who you are!!
Lots of love, more updates to follow.
Jory
Posted by hopingandpraying (Member # 9256) on :
Jory - that is such good news! Thank you for sharing your progress with us. Please continue to keep us posted.
Just take one day at a time - remember this didn't happen overnight and you're dealing with an incredibly insidious and complex disease which is very difficult to treat.
I'm so glad we were able to help you - this is all a team effort, after all!!! I pray that Canada's hostile environment and medical establishment change towards Lyme and suffering people get the help they so desperately need!
Have you checked for any resources for financial help in the book I suggested you read:
"Ending Denial (Updated in 2013): The Lyme Disease Epidemic - a Canadian Public Health Disaster" by Helkie Ferrie.
Also check with the Canadian Lyme Support Groups at:
More blessings and prayers to/for you on your healing journey. Posted by TF (Member # 14183) on :
Yes, babs meds are among the most expensive!
(Except for me. I couldn't take Mepron/Malarone because I was allergic to all the meds that must be paired with it. So, my doc treated me with Bactrim DS. He said it takes twice as long to do the trick compared to Mepron, but it works.)
So, that isn't expensive at all. If you want to request that med next time, you can tell the doc you don't have the funds for the preferred meds. She understands this completely.
I like this: "I'll soon be turning tricks to pay my medical bills, any takers?"
Ha, ha, ha, ha, ha. !!!!!!!
So, you still have a sense of humor, I see! That is very good.
It is good also that you are making note of improvements. That will encourage you to stay the course.
Try additional detox to get rid of the flu symptoms and lessen that unbelievable fatigue.
At the start of treatment, it is very, very hard. You are doing the hardest part now. Like basic training.
Things should get easier as the treatment goes on.
Posted by jory (Member # 50029) on :
Thanks hopingandpraying!
I'm also looking forward to the day tick-borne diseases get the respect and attention they so desperately need. My government is slow to act, and the uneducated doctors in high positions of authority only complicate matters.
Through facebook I've met several other "lymies" who live 10 minutes away, they've had the same awful experiences with the same awful doctors. Comforting yet disturbing, there must be thousands of us in my city!
Thanks for the links, unfortunately Canlyme has no resources. I'm not sure what will be, but I'm trying hard to stay positive.
Thanks again for what you do!
Jory
Posted by jory (Member # 50029) on :
Hi TF!
Thanks for your support. I'm already on Bactrim DS, the new med is Coartem. $980 CDN for 3 months worth. Woof.
Doing lots of detox: milk thistle, ala, phosphatidyl choline, olive leaf, alka-seltzer gold & lemons, reishi mushrooms.. My counter is a pill popper's haven. Any suggestions on top of all this?
No I haven't lost my sense of humor yet, am counting my blessings as I see others struggling who have been at this for so much longer than me. So, am I hired? When do I start?
Happy Sunday TF, lots of love to you.
Jory
Posted by jory (Member # 50029) on :
Hi All,
Today is my one year anniversary of LymeNet saving my life. A huge thanks to members Lookup and TF for getting me to my doctor, and also to Lymehope, Hopingandpraying, and Tincup for being among my first teachers in this mess of lyme disease. The battle wages on, but I'm in a much better place than I was a year ago.
HUGE HUGS TO ALL OF YOU!
Jory
Posted by Bartenderbonnie (Member # 49177) on :
Hey jory.
So good to hear from you. I've often wondered how you are doing.
Thank you so much for posting your recovery. We need more inspirational posts like yours.
And thank you for being such a great Lyme advocate for our neighbors to the north. Miss you.
Hugs back BB
Posted by jory (Member # 50029) on :
Good to hear from you Bonnie, miss you too!
Treatment was going well for a while and then in January I had to stop everything for a month because my liver enzymes got very high. Since going back on things are improving, and I've also found some really helpful things to cope.
These days I spend a lot of time on facebook, doing more or less the same thing as I was here, sometimes I wish LymeNet had a group chat feature where everyone could check in with eachother.
Some fantastic stuff is happening in Quebec with respect to Lyme disease, on March 22nd a meeting was held at Quebec's National Assembly in support of a petition by AQML, the local Quebec Lyme Association. The petition was brought by two opposing parties who joined forces for this specific need, and the meeting was an amazing success. A budget is now being fleshed out for the development and implementation of an action plan. Really exciting to see unfold!
How is treatment going for you these days? Are you planning to open your pool this year?
Posted by Bartenderbonnie (Member # 49177) on :
We thank you. Posted by hopingandpraying (Member # 9256) on :
jory - so glad to read your update and that things are finally moving in Canada.Please keep us posted as to further developments.
Take one day at a time.
God bless you on your healing journey as you continue to get better.
Posted by jory (Member # 50029) on :
Thanks Hopingandpraying, very glad to hear from you Definitely taking one day at a time, lots of baby steps. Here is a video of the presentation AQML made on March 22nd:
I'll share more news as it arrives. Thanks again for being so helpful, your messages of encouragement made a big difference a year ago!
Best wishes and warm hugs,
Jory
Posted by jory (Member # 50029) on :
One year ago today I finally got to a doctor (#18!) who understood my situation. She diagnosed me clinically at her office in Washington DC, and my first antibiotics were obtained later in the day. This year of treatment has done so much good, I am grateful to both her and LymeNet for guiding me in those very difficult days, and also for the few special and precious friends new and old who came through in the most difficult times. Thank you Lookup for that initial spark, and TF who spent a lot of time counseling me.
Posted by lookup (Member # 44574) on :
Hey jory! Good to hear from you! We are all glad you were able to make it happen to get in to see Dr. __
You have helped out a lot of people too! You have many good tips that help alleviate the suffering of others! I share them whenever I can!
Hugs!
Posted by jory (Member # 50029) on :
Thanks Lookup, I'll continue to send updates as I see more progress. Sending big hugs and lots of appreciation your way. What a year!
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