posted
Hello, everybody. I haven't posted much here so I'll write a quick history summary and then present my question.
Around 6 years ago or so, I started having sx, including vision loss, bad balance, numbness, tremors, hearing loss, dizziness, seizures and so on...
Went to the doc. Thought it was MS. Went to a neuro. She couldn't figure it out and pushed me away. I got scared, stopped going to docs for a while. Moved and went to a walk in clinic upon new sx (numb feet and pain in body).
They found out I had Lyme. One doc said definite and showed me results confirming. Other doc said I probably didn't have it but just in case, gave me doxy for 3 weeks. The "good" doc also suspected something on top of Lyme and sent me to get a full spinal MRI and did more blood work. Had one lesion on my spine and low vit D.
I became so bad after the meds that I had to buy a cane. Couldn't eat or sleep because of pain. Went to doc who sent me to hospital who sent me to doc who was then closed. I didn't go back and eventually moved away from there.
Went back to original doc who thought I had MS as I moved back to that town. I told him all that happened with Lyme and that I was still sick, on and off. He said chronic Lyme doesn't exist and maybe I'm just depressed. I left and haven't gone back since. That was about 2 years ago.
So now I'm between using a cane, crutches and a wheelchair and still having pretty bad sx. My neighbor has convinced me to go to another doc. This time, it is at a university and I have no idea what to expect.
So my question is this:
What do I tell this new doc? As far as I know, he in NOT a LLMD. Do I give him a list of all my sx with no history? WITH the history? Do I tell him everything?
My biggest fear is going in there and hearing this is all in my head. I know many of you understand this. It becomes so stressful not being able to get help that it gets to the point where the wheelchair doesn't look so bad...
My appointment is this coming Friday. I would really, REALLY appreciate as much input as possible. Thank you all for reading this.
Hugs and love!
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I sent you a private message.
Posts: 4681 | Registered: Oct 2000
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posted
I hope folks here have sent you PMs about LLMDs - Lyme-literate medical doctors to go see - they are the ones trained to recognize, diagnose and treat Lyme disease and co-infections, and those doctors are the ones you need to go to.
If you have not received any referrals yet, you can do as Hopeful suggested and post in Seeking.
Posts: 13117 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would cancel the appointment, actually.
You say it's at a university medical center. Not a good start as they are under the IDSA's direction regarding lyme. You will likely be told again the same things as with previous appointments that went no where.
[The ONLY exception to university clinic would be the lyme center at Columbia directed by Brian Fallon. However, that is for research, not treatment.]
TuTu (and others have posted this first set of links that explain a lot).
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.
=========================
Liver support & Adrenal support is also very important before and all during treatment. Most LLMDs are well aware of those methods. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Aspartame &/or MSG - and other additives - can cause many of the symptoms you describe. While you were previously dx with lyme and your history matches chronic lyme,
it may be that if there is even a trace of MSG in your diet and that can be eliminated, that you will find some measure of relief as the full picture is sorted out.
posted
Thank you, all, for your responses. I have gotten a PM with some info on docs. Unfortunately, it's not looking so good, insurance-wise, and I am plum out of money. I won't give up looking, though.
I understand what you are saying about cancelling, Keebler. However, I think that if I skipped out, even on a possibly bad appt, it would reset me back to scaredy-cat mode and I won't go, again, for a few more years. I feel this is something I should do, despite my fears and the chance of being properly helped. I wish the university I was going to was the one you said was good but, alas, it is not.
As for MSG, I will be sure to avoid it, more often. I have changed to a vegan diet (no meat, dairy, eggs or honey) within the past few months and am a LOT more label conscious so noticing that ingredient won't be a problem. I have also recently cut out aspartame as it's....well....evil.
I haven't had a chance to look at all the links you've posted, but I surely will! I have watched both of the videos (yesterday, actually) as you had posted them in a thread about someone else. I do know about the controversy to some extent but I still have sooooo much to learn about Lyme. I ended up spending all my time researching MS as that was the original thought of what I had. I'll educate myself, though.
I do have to ask, considering I'm set and determined to go to this doc, any advice in terms of what I asked about? :/
And, again, thank you all so much for your replies.
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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posted
No way would I go to a university to be evaluated for Lyme that I know I have. There's a 99% chance they would tell me I'm nuts, depressed, chronic Lyme doesn't exist... etc etc etc.
You need an LLMD immediately. It will be a long road, but an LLMD will take you seriously and get you well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
I do understand, as most of us at Lymenet do, the financial barriers to treating with a great LLMD. Still, that doesn�t mean that going to any doctor, a university doctor, an IDSA doctor, or even a highly regarded doctor at a prestigious hospital, is in any way helpful. It can actually be harmful and set you back, as ironic as that may be.
I�m not knowledgeable about the state insurance in your state, and what it covers, and who may take it.
Please do not give up looking for a great LLMD who may take the insurance you are talking about. Again, I suggest trying Seeking Doctor. Also try to find a support group in your state that can help you find a LLMD. There are also online support groups by state.
Posts: 873 | From WA | Registered: Dec 2005
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posted
I have been sent 2 listings for CT. One doesn't take any ins and the other is mega far away. I'm definitely open to any more places I may not have checked into.
Meds that are free/cheap sounds like something I can handle.
As I continue to read everybody's posts, everyone seems so knowledgeable. They also seem like they've been through A LOT.
I can't help but feel overwhelmed by all of this. It seems like a lot of work, with so many treatments targeting bacteria killing, detoxing, etc...
Now, I'm not saying I don't want to do all of this because I really, really just want to get better... but I need some organization. Right now, I have tons of info that's scrambled all over my brain. Is there a thread where people have listed a time line of their Lyme journey?
Maybe I should post this in another thread. Yes, I will do that, as well as leave it here.
Bah to my brain! Hugs.
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some suggestions and links are laid out for you here in your other thread:
A Need for Organization -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I don't want to loose sight of the topic of this thread.
This coming Friday,you have a �blind� appt with a regular university hospital doctor.
I've already suggested cancelling, as have others (in light of your past appointment history).
hopeful4 states the reason to cancel very clearly: --------------
I do understand, as most of us at Lymenet do, the financial barriers to treating with a great LLMD.
Still, that doesn�t mean that going to any doctor, a university doctor, an IDSA doctor, or even a highly regarded doctor at a prestigious hospital, is in any way helpful.
It can actually be harmful and set you back, as ironic as that may be. (end quote) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I don't usually post my own experiences here for many reasons. However, I have to say that I, too, thought "Wow! A university hospital and that doctor is also a professor there. Surely they will see. Surely they will know."
Let's just say I was so very wrong - even with the specialists at various university hospitals over the years. Probably 6 different university clinics and, oh, about a dozen doctors in 4 different states over 20 years.
Horrible beyond belief. Damage was done.
Find ALL your area lyme support groups. Get suggestions for doctor there.
If you need to wait for a LLMD, they can help, too.
And, if you need to see a certain kind of doctor for some reason (other than for lyme) they can also give you suggestions for who might at least be lyme-friendly with some degree of knowledge so as not to discount or damage. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Not doubting anybody's words, I just want to understand better... How would it set me back, exactly?
The more and more I read this stuff, the more I want to cancel. But what do I do after that? If I can't find a LLMD that takes my insurance, I'm stuck with nothing.
Can I solely self treat? If so, considering I can't work and haven't been able to for a while, now, is there a way to get disability without the dx of a doc?
Questions, questions, question. I'm just bursting with them and I appreciate SO MUCH what all of you are telling me!
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You don't have to reply. This is a check-list: -------
1. What do you expect this "blind" appointment to accomplish?
2. How will that be different from those before that you described above?
3. What information do you have that suggests this will go any differently?
4. How can this set you back?
Be wary of unnecessary tests. For instance, anemia was so severe, a univ. doc. ordered a full GI barium x-ray to search for internal bleeding.
There was none but the barium made me so very ill and put me in a wheelchair.
Turns out that I had undiagnosed babesia (a tick-borne infection) to account for the anemia.
But, the univ. docs had no clue.
I've been set back terribly, many times for "magical thinking" in this regard. ALso consider the effect of medical verbal abuse. It's not inconsequential.
Until you can research the background of a doctor, talk to others who have been to them, read what they written and know their thoughts on chronic illness, just stay away.
After researching a doctor, then you have a better chance of finding one with the intellect and experience to match your needs. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- How can this set you back? Here are about 500 ways:
How "regular" doctor appointments (with those who are not ILADS research aware) usually turn out for those with lyme:
posted
Yes, read through the url Keebler posted here just above this post. Probably after you see the university doctor, you'll be able to add to the thread -
I suggest you keep looking for an LLMD you can go to.
Fyi, it really helps to know if you're just dealing with Lyme or also with any co-infections, like babesia, bartonella, ehlichia - you can google their symptoms and see whether you think you match any.
Treatment for Lyme falls in three categories - kill/deter the organisms, detox, and fortify the body. You can use the search function at the top of the page, type in any word or phrase and read archived threads. I call it going to Lyme school, just to learn about all of this.
Some people are treating with herbs, like the Buhner herbs, for example. Steven Buhner wrote book, "Healing Lyme," which has a lot of good info and also which herbs are for which infections. His site is www.planetthrive.com and there's a yahoo discussion site, Lyme_Aid_Buhner
Posts: 13117 | From San Francisco | Registered: May 2006
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I guess what I wanted to accomplish was... Oh, man... I don't know. Pressure brought me here.
Pretty much, I'm sitting here wasting away (on and off, anyway) with no explanation and no way to get better.
So my neighbor pushed me into making this appointment. He (and everyone else aside from me) kind of think a new doctor will have all the answers to treat me so nobody has to look at me like this, anymore.
I want to get better but I'm not sure where to start and I guess I thought this would be a stepping stone. I had looked into LLMDs years ago but after finding out none of them took my ins, I was discouraged and allowed my fear of docs take over. Then, when I got a little better on my own, I started ignoring being sick.
That obviously didn't work because then I got sick again...and again. And when I say "sick" I mean I never fully recover inbetween. I'm just not in a wheelchair or having to use a cane.
I've been naive in thinking maybe it would just go away. Despite knowing this, though, I would still be turning a blind eye if my neighbor hadn't stepped in and kicked me in the bottom.
Eh...I just need to find the right path.
Um..does that explain it? My brain is so fried. I'm sorry.
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, I don't question at all how you came to make this "blind" appointment.
I assume, though, that while the neighbor thinks this doctor is your ticket neither your neighbor nor the doctor are lyme "educated" or you would have said so.
I assume that you researched the doctor but found nothing to indicate he or she knows more than the others who failed you. If you have not researched the doctor, do so now - start with the lyme support groups in a circle around you.
I, too, have gone to certain doctors because of well meaning friends or neighbors. Big mistake.
Just as "magical thinking" and hope that a "blind" appt. will be our key to success, we can also get clobbered by thinking there is no other way.
There is always another way. With lyme, there are many other ways, actually.
1. Connect with your lyme support groups. They will help you find the best doctor possible at this point in time for your budget.
They can also help with practical suggestions.
2. In the ND thread (link posted at your other thread) . . . you will find books and articles on things that we can do to help ourselves. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You could also locate Lyme support groups near you and communicate with them - you can find them at the left here, with Support Groups - click on United States/Connecticut.
Believe me, and everyone else here, if you go see this university doctor, and they're not an LLMD connected with ILADS, you'll hear anything and everything, as in the over-500 posts in the thread about the worst things that doctors have said to everyone,
but it won't be what you need, which is REAL knowledge and REAL assistance with what you're REALLY dealing with.
Thx, Keebler - we're posting at the same time - Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Also, you assume correctly, Keebler. I couldn't find much info at all on the doc I'm supposed to see but I did look. As far as I know, there was no mention about any LL knowledge.
I JUST looked up some info in terms of Lyme and the Uni I was supposed to go to and it's not looking good...at all.
Off I go to find a support group.
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mentioned above that you have become a vegan.
I hope you are taking an excellent TAURINE supplement, B-12, and also getting
adequate CLA (Conjugated Linoleic Acid) as that comes mostly from muscle meat.
A vegan diet can be dangerously lacking in taurine. It's vital for nerve, vision and heart health. Without it in our diet, blindness can occur. So be sure you are getting it it the right amount.
Not sure why you are avoiding eggs as they are excellent food. If for ethical reasons, there are places to get humanely raised meats and eggs from "happy" hens, so to speak.
FISH is also excellent. Just find the safest kinds in terms of mercury, wild, etc.
I was vegetarian for 18 year and only when I started eating meat, fish and eggs again was I able to walk better.
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTIONS
Indian J Med Res 124, August 2006, pp 129-148
- by Anura V. Kurpad
Fifteen pages of text.
Excerpt from abstract on page one:
. . . In general, the amount of extra protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
DO NOT GO TO ANY UNIVERSITY DOCTOR HERE IN CT- yes, I'm yelling. I will send you a pm with couple docs that take insurance.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
You mentioned that we seem knowledgeable. It's because we�ve all had to learn the hard way about Lyme disease, and we�ve had to educate ourselves in order to advocate for ourselves.
Here are two helpful books about treating Lyme disease:
�The Lyme Disease Solution� by Dr. Kenneth Singleton
(from Amazon) �The Lyme Disease Solution is a comprehensive guide to the diagnosis and treatment of Lyme disease and other tick borne infections. The author, Dr. Kenneth Singleton, is a board certified specialist in Internal Medicine who himself struggled with severe symptoms of Lyme disease for 8 years prior to being correctly diagnosed and treated. His book is full of medical wisdom and practical pearls of clinical information that every Lyme patient will find immensely useful.�
�Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and its Coinfections� by Stephen Buhner
Comprehensive book on herbal healing for Lyme disease including treatment protocols
Good luck with everything.
Posts: 873 | From WA | Registered: Dec 2005
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There are many acceptable conditions which may qualify a person for Social Security Disability. I�m not trying to overwhelm you with information, because I know you have to deal with one thing at a time. When you�re ready, you can refer back to this. Again, it�s a matter of educating ourselves and advocating for ourselves.
I found this website helpful in learning about Social Security Disability. It has many articles and supportive info. Hope it helps you, too. I�m not advertising for this attorney, I just thought the articles were good.
Some of the articles are: � Five Reasons Judges Approve Social Security Disability Claims � How to Prepare for Your Social Security Disability Hearing before an Administrative Law Judge � Winning Your Social Security Disability Claim: 15 Mistakes You Can't Afford to Make! � How Does Social Security Define "Disability" Anyway? � Does having an attorney determine whether you win or lose your Social Security Disability case?
Posts: 873 | From WA | Registered: Dec 2005
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