I saw my ID dr. this am. Dr R. says I don't have lyme any more.
I told her to cut the c**p, whats going on. We went into the back room and had a cup of coffee together.
She says "Diane, I can't treat you any more." ? I knew dr. had a meeting the other day, well , she was informed for the last time by the medical board to not treat us anymore than 3 months or she would loose her license.
Dr. R. gave up the fight!
Dr. gave me a 6 month Rx. for B-12 and something else for neuropothy, cant remember what it is . I dropped it off at the pharmacy.
I cried all the way home and still crying. I have no one now but me.
I know not to cry b/c it causes so much neuro pain.but can't stop.
I can't go to another state: raising 2 grandsons and one of them has albinism and needs me.(more than the other).
This to will pass, today I just want to feel sorry for myself.
Posted by saved10 (Member # 18413) on :
Diane....I'm so sorry!!!
Hopefully someone will come up with some other solutions!!! Don't give up!!!
God Bless
Posted by MDW005 (Member # 22706) on :
I will miss her hugs - she always gave me two.
When I would come in, and one when I would leave.
She didn't charge me today for anything, freebie.
I think she truely felt bad.
Posted by nefferdun (Member # 20157) on :
There is no reason for you to give up. There are herbs like andrographis, teasel root and TOA free Cat's claw that work ok for lyme but nothing for bartonella.
If herbs do not work for you - Or you have bart, worse case scenario is that you can order the drugs online from India (not China) and go in for liver tests once a month.
There are people out there who will protest this idea but as your doctor points out, we are already operating outside CDC guidelines. As for the drugs not being safe, if you need an xray in the middle of the night, it will be an Indian radiologist that reads it! If you can trust them for that, why not trust their pharmacy?
I would not recommend doing this for a long period of time - just for awhile until you can find another LLMD. I have gotten imitrex online from India because I cannot afford it here. It is $24 a pill here and $3.50 online and works just as well. I do have a prescription for it though although I never have to use it.
Posted by canefan17 (Member # 22149) on :
Now is the fun part. Treating yourself : )
Use it as motivation to learn EVERYTHING you can and get yourself better.
How amazing would it be if you treated yourself and became Lyme-free?
Goodluck to ya.
Posted by proudmom (Member # 15532) on :
Find a dr. that can treat with long term abx. Like a dermatologist? Got acne? Im so sorry that you have to go through this ringer.
I'm still confused....what LEGAL leg do these med. boards have to stand on? Both treatment guidelines are legal...Idsa and ilads.
Idsa guidelines state right there for all to see that these are only guidelines and that it's up to the dr. to treat according to patient response. Sorry, I get sooooo steamed that these doctors can be so eaisly railroaded and I'm sure her heart was in her work.
Cant she still have you as a patient and treat your outlying symptoms? I mean your B-12 and such? Seems the abx is the usual issue in these cases. That would leave you only having to find a way to get the abx needed.
Do you know any of her other patients? If so talk to them too and see what they are going to do. I would try to find the next nearest LLMD and maybe get a carpool for appts. going. How old are your grandbabies? I understand they need you but they also need you to be healthy to care for them. Can you find a sitter for them for atleast once a month?
Hoping for brighter days ahead for you
Posted by MDW005 (Member # 22706) on :
There aren't any good drs. in Ga.
My grandchildren are 8 & 10. I'm a young grandma. The boys call me moma. I've had them since birth.
Yes, dr. will continue to give me my B-12 therapy, just not antibiotics. I feel better now. Can't stand being down to long.
thank you.
Posted by Dekrator48 (Member # 18239) on :
Praying for you...that you will find the answers you need to keep treating and recover.
Posted by merrygirl (Member # 12041) on :
this happened to me. very heart breaking. I know how you feel. hugs to you.
Posted by LightAtTheEnd (Member # 24065) on :
I am so horrified to hear stories like this. I'm half afraid my good but non-Lyme-literate GP might decide to dump me as a patient, if she learns enough about the Lyme situation.
I met a patient in my LLMD's office on my first visit, who said she had been thrown out of several specialist's offices without seeing her when they found out she was on long term antibiotics for Lyme, even though she was seeing them for non-Lyme reasons.
I still can't comprehend the forces that compel doctors, who have sworn to the Hippocratic Oath, to turn patients away without giving us treatment, and knowing we will have great difficulty getting any treatment elsewhere, so they are condemning us to get sicker.
Or worse, when they can continue to offer us treatment that doesn't help, or actually makes us sicker, like endless rounds of tests for things we don't have, antidepressants for those not depressed, and steroids, but they can't offer us the treatment that might work to fix our problem.
The good part is, there are many things that may help, lots of which you can do for yourself without a doctor, and no certainty that antibiotics will always work. There is so much trial and error in Lyme treatment.
Read Stephen Buhner's book, Healing Lyme, and Dr. Kenneth Singleton's, The Lyme Disease Solution, for a lot of ideas.
For the first several months I was sick, after I diagnosed myself with Lyme, I had the desperate feeling that there was no one to help me.
I could not get advice from my uninformed GP (I rejected her offer to send me to an ID duck), and it took me weeks to find names of LLMDs, and then I contacted several who did not reply to me (except one, whose office person told me he was deceased).
When I found an LLMD, I had to wait 3 months for an appt.
Meanwhile he didn't take insurance and was 2 states away, too long a drive for me to do in 1 day, and I didn't have the money to pay him, much less travel there.
I cried a lot during that stage. I had never met a Lyme patient then. My family did not understand Lyme nor believe I had it. I envisioned myself just getting sicker and sicker, and losing my job, apartment and credit as well as my mobility, while nobody helped me or even noticed.
Eventually I solved the practical problems and went to the appt., and I'm very grateful that I found an LLMD and am now on good treatment, and my symptoms are mild and have not gotten worse.
But in the meantime, those 2 books helped me figure out things I could do to treat myself, with herbs, diet, detox, stress reduction, etc., that were less dangerous to try than drugs.
There is another book called Insights Into Lyme Disease Treatment, that interviews 13 LLMDs about their treatment approaches and recommendations.
Reading that is like getting advice from all of them, but you need a doctor to do some of the things. Still, if you can't talk to an LLMD, at least you can see what some of them might suggest.
I did consider ordering foreign drugs, or accepting a donation from someone who had a perpetual prescription for doxy for acne (who offered it to me, bless them), but I was afraid of getting myself and maybe someone else in legal trouble, and I was scared of side effects, herxes, overdose or liver damage without an LLMD to give me medical advice.
It also occurred to me, in my paranoid state, that if I ended up in jail for acquiring drugs illegally, I would never get proper Lyme treatment.
On the other hand, I also thought, if I cure myself and then go to jail for it, my life will be ruined for fewer years than if I don't treat the Lyme and just let it get progressively worse.
Good grief, what kind of medical system do we have, that patients are driven to considerations like that? It's not bad enough that the bills can make us bankrupt and even homeless? And then good doctors are forced to turn us away even when they have the means to help us? That just can't be right.
But I think there must be legal ways to buy the antibiotics--I just don't know what they are, because I didn't need to do it, so I have no advice about that.
I do worry what I would do if anything happened to my LLMD, who is only open 3 days a week. There is only one other within a long day's drive of my home, and I don't know whether that one is taking new patients.
If I couldn't go to either of them, I think I would try to find a good one anywhere and fly there. Not sure how I could pay for that, though.
Don't give up trying to find a way to travel to an LLMD, especially because your grandsons need you to take care of your health as well as you can.
Meanwhile, do everything you can to keep fighting it on your own. You are not helpless.
(((hugs)))
Above all, don't give up hope. As long as you hang onto that, you can just keep going until you find a way.
Good luck to you!
Posted by MDW005 (Member # 22706) on :
Thank you for the(((hugs))). I love hugs!!
Keebler gave me some great info. just the other day. I have my reading glasses on Keebler!
Posted by Snailhead (Member # 18091) on :
I am really, really sorry to hear this. God bless you.
Posted by MDW005 (Member # 22706) on :
Thanks everyone for the support. I will get past this obstacle and move forward with my life.
Posted by xoxoxox (Member # 18778) on :
Lots of hugs and prayers. Having a door close like that is a terrible, horrible feeling, especially when the next one is not readily apparent.
Have faith that something will be open for you soon because although it may not feel like today, it WILL happen!
Posted by sparkle7 (Member # 10397) on :
It's not the end of the world... It may be an opportunity to find a better way to go.
Have you looked into the Fibromyalgia & Fatigue Center? There's one in Atlanta, I believe.
I have heard that they don't treat Lyme in GA but you may be able to get then to help you with your symptoms & prescribe drugs if you need them. I'm not sure what the situation in GA is with Lyme.
They are expensive, though.
Posted by hostbody (Member # 12695) on :
I'm sad to hear this. Politics! Well, in reality no one has a cure for Lyme. So, we all eventually start researching for ourselves. Try things or MD would/could not recommend in the office. After all the years on antibiotics I then tried bioresonance, cat's claw, teasel root, all kind of immune building naturalpathic pills. I think they all helped, to a point for me. Move forward and start a new chapter in your healing process. Prayers are with you...
Posted by lyme in Putnam (Member # 11561) on :
I can't imagine how you feel. I give you credit for being as strong as you are. I hope you feel better.
Posted by Nicole_Denise (Member # 20620) on :
It's so sad when good doctors are prevented from doing their job. I hope you find another way to get treatment.
I'll be praying for you
Nicole
Posted by lymebytes (Member # 11830) on :
I am so sorry. I can sympathize with neuropathic pain, I have had my share for years.
Please call ILADS and they will be able to tell you of an LLMd that can resume your treatment.
Here is their link, scroll down beyond the contact form to see their phone number. Call them and they are happy to help you find a new LLMd: http://www.ilads.org/contact/contact_ilads.html
Wishing you the best.
Posted by MDW005 (Member # 22706) on :
Hi lymebytes,
I looked into ILADS when I first started looking for tx. in Ga.
There are a few, but have been informed I would be wasting money and time in Ga.
I truly will find what works for me and move on and be healthy again. I'm not a quitter, never!!
Posted by TxCoord (Member # 9204) on :
Find out the names of the board members and write letters to the editor stating that they want you to remain sick.
See if a non-profit will help you with a billboard naming them. If they are "doctor's" go after them for violating the oath - "First do no harm".
Call your local TV investigative reporters and ask them "Why do these doctor's want me to suffer needlessly?"
Visit them individually and ask "Why do you want me to suffer?" and make sure there are people around when you question them.
Put them in the hotseat for their decisions.
Posted by Tish (Member # 18029) on :
Re: There is no reason for you to give up. There are herbs like andrographis, teasel root and TOA free Cat's claw
I totally agree with this. I have been having such great success starting with the Cowden protocol and following with two months of Spiro by Raintree. I am walking the dog fast three times a day, plus a full time busy job and feeling awfully good these days. I plan to next do three months of colloidal silver. I'm afraid to stop, even though I feel well. I might relapse. After the silver, I will probably do Buhner. I've have chronic Lyme-about 15 years. Just diagnosed last year.
Tish
Posted by sparkle7 (Member # 10397) on :
Yes, you can do it on your own. It just takes time to study everything & make decisions about which herbs to take.
I don't think trying to fight "city hall" will help...
Posted by MDW005 (Member # 22706) on :
I agree with sparkle, I would rather fight the disease than city hall.
Posted by MDW005 (Member # 22706) on :
looks like I might have to fight city after all.
Posted by Keebler (Member # 12673) on :
- Regarding local TV investigative reporters - that often blows up in our face and they usually end with the ID doctor saying nothing is wrong.
However, there are few times when this has worked well. San Diego, Boston . . . sorry I don't have the links but if you could get those and have the reporter study them first . . .
and work through the LDA &/or local support group.
Realize that the doctors OWN the media in all towns. Look at all the advertising. So much from hospital groups AND insurance companies, especially during the newscasts.
Also all those drugs advertised would not even need to be around if infections were actually treated correctly. But, the drug companies would rather us be chronically sick and take all their drugs forever - and as they advertise on the news, they also control content behind the scenes.
Just be aware of that if you do approach anyone in the media. You could be crushed like a bug and made to look like a freak hypochrondriac. They did that to someone in my state and then ended with an IDSA ID doc discounting the patient totally.
So, if you do this, be sure you have some good minds with you and think it through. Reporters will side with the ID doctors every time so you need an equally good expert for them to interview.
You would also have to consider how - at this particular time - this could affect your LLMD. Would it be just enough to have her close up her practice? Would another time work better? What are her thoughts about anything you do - especially if you mention her name or ANYTHING that could lead a reporter to her?
-
Posted by MDW005 (Member # 22706) on :
honestly keebler, I don't have the energy to fight right now.
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