Hi everyone...I think I am going to take a break from seeing any doctors for the near future. Every single dr that I see ends up telling me that either a) I might die, b) I might be sick forever or c) they just do not know what to do to help me.
I saw a neurologist today who has a great rep and is lyme literate. He basically told me that he has no idea what is wrong with me and why I have not responded to any meds, and that he thinks my case is "beyond baffling."
I cannot take hearing this anymore from drs...I am wasting time and money by seeing these people. I am done for now. I am just going to see how my body reacts to rest and diet and exercise. None of the drs I see knows what the hell to do with me, so I am done with them for the time being.
Anyone else have EVERY SINGLE DR tell them that they do not know what to do to help them? If so, what path did you take?
The frustration I feel...I cannot even begin to put into words. Thanks for letting me vent. Jess
Posted by daynise (Member # 39609) on :
I understand your frustration. I really do but if you can tolerate one more visit to an LL ND- I really really think you will find real help. If you want email them first- tell them how frustrated you are and how difficult your case is and the one that steps may be able to save your life and give you back a quality of life.
That's how I found my ND. I got a list and emailed them all. He stepped up.
They go about illness with a whole different mind set. And they listen. They are the only type of doctor that has EVER taken me seriously. I am a "difficult patient" and always have been and been branded that since I was a child. So, forget the regular guys but try this one last thing, please...
Posted by jessicabooklover (Member # 39427) on :
Daynise, I just do not see the point. I have seen so many drs.
I have seen ILADS trained physicians and even they cannot figure out why in the hell I cannot get better. My last dr was a true llmd and he has helped countless people get better...yet here I am, sicker than hell with a partner who cries when he looks at me because he is so scared I might die.
Why try another dr and get let down yet again? I cannot take any more disappointment..it has been years with this **** now, and no reprieve. Jess
Posted by daynise (Member # 39609) on :
I know- I totally get it and I know how tired you must be and frustrated and so ready for a break. And I promise you I felt the exact same way about doctors when I reached out via email to these ND guys and every one of them took the time to email me back.
Some were honest and said they didn't know much about Lyme and others said they could help but used protocols I couldn't really afford and I narrowed it down to a couple of people and upon further emailing felt the most comfortable with the one I chose in the end.
I just want to see someone do that for you and tell you yes we will help you, it may take awhile, but you deserve to be heard and not pushed to the side because your case is hard.
Posted by jessicabooklover (Member # 39427) on :
But NO ONE WILL DO THAT for me..they all just tell me its hopeless in one way or the other.
I would rather not see any drs and not have my heart broken and hopes crushed yet again.
NO ONE tells me I will get better. Even my gp who I love a lot and who is very very fond of me doesnt think I will get better...she tells me her goal is to "keep me alive and ticking" but she is perplexed as to what to do.
I am so damn frustrated. I try so hard to get better and my body will not cooperate. Jess
Posted by jjourneys (Member # 39813) on :
I'm sorry you're so fed up jessicabooklover.
I agree with daynise - try an ND - naturopathic doctor. They are not the types of drs you have been seeing. They treat differently, they look at dis-ease differently. You may find some help with them!!!!
Posted by jessicabooklover (Member # 39427) on :
I saw a naturopath a week or so ago but he was not very lyme literate. He was very nice but I could tell he was in over his head and he didn't really "get" my case, so I am not going to see him again.
I just honestly give up on drs. I am being totally serious. I have tried, and they have tried but my body will not respond to treatment. Its not their fault really...its my body. But I am done seeing all these drs. Jess
Posted by Ellen101 (Member # 35432) on :
Any Lyme literate doctor that says the things your doctor did should not be practicing. Any doctor that stops your tpn tells you he cant help you anymore leaving you at adangerously low weight should not be practicing. The problem is not you Jess its who you are seeing. I know people have been recommending LLMD's,etc. Im puzzled as to why you have not pursued any of these...
Posted by jessicabooklover (Member # 39427) on :
Ellen...because I have seen 2 llmds now with great reps including my last dr and they tried tons and tons of meds and treatments and nothing positive has come of it.
Why spend tons of money and get my hopes up yet again to see another dr who prob will end up as frustrated as they are.
My last llmd is a damned good dr. He may have been overly blunt with me and done things I disliked at times, but he did try. The fault is not with him..its my body. Jess
Posted by daynise (Member # 39609) on :
It's ok Jess. Take some time then and maybe after not struggling with what to do next or where to turn- it will come to you.
Let it clear- you had a frustrating day, you have frustrating and hurtful things going on personally, AND you feel like crap...so take a mini vacation from trying to figure it out and then when you get ready again, go back over your options. Don't stress further about it. You say you need a break- then you do- totally understandable.
In the midst of my breakdown before getting diagnosed with PTSD, I had several therapists tell me I was too much for them. "Out of their scope" they'd say. I think I got rejected off the bat from like 5. And I said the same thing- I give up- not going to do this anymore or try to get help- forget it.
But then after taking some time and giving up on therapists- a clarity suddenly hit me. I just went straight to the top for my particular set of traumas and I was embraced finally after 8 months of floundering suicidal and alone and being rejected by supposed professionals.
The worst is when they tell you they can't help and don't even direct you to someone else... you just feel adrift in an ocean all your own.
Totally different I know- my psychological stuff and your physical stuff but as I'm remembering this I recall the level of pain and frustration I felt...
So screw doctors for now. Take a rest from it and come back to that part of the struggle when you are ready. And in the mean time, we are all still here for you.
Posted by jessicabooklover (Member # 39427) on :
THANK YOU daynise...you completely get it. You just made me feel infinitely less alone. Thank you. Jess
Posted by Keebler (Member # 12673) on :
- It may be helpful to focus on the malnutrition first. I know this has been posted before but not sure you've ever been able to find someone like this.
I think you've have really bad guidance regarding the nutrition for a body that has such trouble with gastroparesis and, as you often report, are under 90 pounds.
I know you can't "do" food but - somehow - IMO - you have to start with food - somehow.
Please seek out someone like this to guide you.
A LL ND would also be excellent here as they are trained in nutrition and would be able to cover many bases.
Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life
December 2011 - About the Author:
. . . currently the only Certified Health Counselor specializing in gastroparesis management and one of very few health professionals with both personal and professional experience with the condition. . . .
The reviews are very encouraging. -
Posted by Keebler (Member # 12673) on :
- Now, if you want to give up on all doctors and all professionals, then you'll just have to do so much work for yourself and become a top notch student. That can take so much effort and so much time.
So many excellent links regarding nutrition have been posted for you for months and it just seems that it's been too much information for you to work through and settle on a food plan that works for you.
You do need a professional to guide you.
Most of us do, no matter at which point we are. It is hard "to see the forest for the trees."
It is my belief that there is a true LL professional who has the skill to help you at this point in time, starting with food. You can NOT proceed without food. Somehow, food has to get in. And there is always a way.
It must start (again) with nutrition. You will not be able to tolerate any treatment without nutrition. And that can start to work for you if you find the right professional. -
[ 03-22-2013, 12:37 AM: Message edited by: Keebler ]
Posted by jessicabooklover (Member # 39427) on :
Thank you Keebler. I appreciate it a lot. Jess
Posted by surprise (Member # 34987) on :
I agree with Keebler. From outside here looking in, having followed your posts for some time now,
I am afraid if you cannot get the continual weight loss and malnutrition issue fixed, you will have no choice but to end up
in a hospital for an extended stay, with the hospital staff in charge of trying to treat this- That will be painful and difficult for your new husband and father to have to go through,
to possibly have to make that decision.
Posted by jessicabooklover (Member # 39427) on :
Surprise-I guess I just do not care what happens anymore. I am at a really low point...my friend left me, I am sick, no drs can help...I just feel done at this point. Jess
Posted by beaches (Member # 38251) on :
Not sure why you went to a neuro in the first place? That would NOT have been my first choice considering your circumstances. If it's the one I think it is, he's a mixed bag.
Jess, please get in touch with a naturopath and a therapist. You have names and you need both, and ASAP in my opinion.
As far as the docs telling you all this crap, why do you find it acceptable for you to just give up and not pick yourself up and carry on with other medical professionals until you find someone who will help you? In your situation, this is necessary, not optional.
Instead of you giving up/giving in, you should be angry--angry enough to pursue appointments with people who can possibly help you!
And you have a right to be angry at any medical professional who tells you might be sick forever, could die, etc. The KEY is to determine for yourself that dying or being sick forever is simply not an option. From that viewpoint, you can formulate questions for docs, which I suggest presenting them in writing prior to any appointment.
I would also advise you to focus on the very major issues at hand in your life--ie, your health and your new marriage, and your health, and your health.
I would do my best to ``discard'' extraneous issues like that of a former friend. People come and go in our lives. One day, he might be back in your life as a good friend or he might not. It is what it is. This has nothing to do with who you are as a person. He needs to get over himself. And you need to get over him and his issues for the sake of your own health.
Posted by surprise (Member # 34987) on :
But... you can't be done. You have a husband you love, right? And your father. I understand not feeling it for yourself- but you have family now that depends on you.
I really, truly believe this food issue/ malnutrition issue can be fixed. I think it's the base of all the rest.
Is it possible to go into an outpatient program for it?
Posted by beaches (Member # 38251) on :
Good point surprise. Jess, you CAN'T be done. That's just not an option at all.
You have a husband and you owe it to him to do your best to get well.
You need nutritional sustenance somehow, some way. I never would have thought of an outpatient program, but it's a great idea to explore.
Posted by jessicabooklover (Member # 39427) on :
Beaches, I so appreciate the support but I really am just too weary of this battle.
I have nothing but drs telling me it is basically hopeless and I have lost one of the people I love the most.
I cannot eat much or sleep well. The only thing keeping me alive at this point is my man and my father. Without them, I would be gone. What do you mean an outpatient program btw? I do not know of any, and it doesn't matter anyway because anything I eat makes me sick..from a carrot to rice to a glass of water at times.
I am so depressed and frustrated. I thank you all so much for the help, but I just want to go into a coma and wake up when my body is a little less wracked with infirmity and the people I love do not just up and leave me. Jess
Posted by Holly Beth (Member # 39193) on :
Jess,I know it's frustrating. I went to many doctors like that too. Before I was diagnosed with Lyme, they all told me it was allergies.
When my symptoms started to get worse and I didn't know what was going on, I would go to the ER with chest pain,memory,loss,upper back pain/rib pain etc...
All the doctors told me was nothing was wrong. I felt and looked like an idiot. I felt like no one believed me.
I started getting throat swelling on top of it.Again they blamed it all on allergies.I was taking all kinds of allergy meds and allergy shots.
What a headache!! I thought I was dying. I would tell my husband at bedtime that when he wakes up for work in the morning to check on me and make sure I'm still alive.
My chest pain, palpitations,my whole body felt so weird at night. I was afraid I would die in my sleep.
I am now on treatment. I feel a little better but ea day I have no clue. You need to find the right dr.
You will be okay Jess...There is a light at the end of the tunnel even though it doesnt seem that way. You will get there!
I have to travel 3 1/2 hrs to see my dr because no one would help me in my area.I'm lucky I found someone that close. It's a struggle but I know you can do it!
I totally understand how you feel. I have felt that exact same way at time. Actually I still get days like that. Please do not give up!
We are here for you!
Posted by surprise (Member # 34987) on :
Eating Disorder Clinics in CT
Search: Name / Info Treatment Level Patient Types Served Therapies Available Co-Occurring Disorders Treatment Insurance or Medicare / Medicaid Accepted? The Renfrew Center of Connecticut 1445 E. Putnam Avenue First Floor Old Greenwich, CT 06870 Phone: 1-800-RENFREW Fax: 203-563-9936 Email: [email protected] Website: The Renfrew Center of Connecticut Outpatient Services, IOP, Day Treatment Adults & adolescents: Male and Female Couples Therapy, Family Therapy, Group Therapy, DBT, CBT, Art therapy, Equine therapy, Nutritional Counseling, Prescription Medication, Support Groups, Individual Therapy, Medical Care Yes Accepted, in-network with multiple providers Medicare/Medicaid Accepted: No The Institute of Living - Hartford Hospital 200 Retreat Avenue Hartford, CT 06106 Phone: (860) 545-7000 Website: The Institute of Living - Hartford Hospital PHP, IOP Adults & adolescents: Male and Female Group Therapy Yes Accepted, in-network with multiple providers Medicare/Medicaid Accepted: Yes Silver Hill Hospital 208 Valley Road New Canaan CT 06840 Telephone: 800-899-4455 IOP adults & adolescents: men & women DBT, Support Group, psychodynamic process groups, Group Treatment, Skills Training Yes Accepted, in-network with multiple providers Medicare/Medicaid Accepted: No Wellspring 21 Arch Bridge Road Bethlehem, CT Phone: 203-266-8000 Fax: 203-266-8030 RTC adults & adolescents: men & women Individual and Group Therapies Family Therapy, Support, and Training, Psychiatric Services, 24-hour Nursing Coverage, 24-hour Milieu Programming, Medication Monitoring, Individualized Treatment, Art Therapy, Expressive Therapy, Recreation Therapy, Land and Animal Programming in a farm setting, State Approved Special Education School, Discharge Planning Yes Accepted, in-network with multiple providers Medicare/Medicaid Accepted: No The Wilkins Center 7 Riversville Road Greenwich, CT 06831 Phone:203-531-1909 OP adults & adolescents: men & women Individual and Family Therapy, Cognitive Behavioral Therapy (CBT), Dialectical Behavior Therapy (DBT, Psychotherapies, Nutritional Therapy No Out of Network Medicare/Medicaid Accepted: No Premier Eating Disorder Centers Information
The Renfrew Center of Connecticut
The Renfrew Center is the first and largest network of eating disorder treatment facilities in the country and has treated more than 60,000 women. The Renfrew treatment philosophy emphasizes a respect for the unique psychology of women, the importance of a collaborative therapeutic relationship, and the belief that every woman needs to actively participate in her own recovery. The Renfrew Center provides a comprehensive range of services at its facilities in Connecticut, Florida, Maryland, New Jersey, New York, North Carolina, Pennsylvania, Tennessee, and Texas. Programs and services vary by site and include: Residential; Day Treatment; Intensive Outpatient; Group Therapy; Individual, Family, and Couples Therapy; Nutrition Therapy; and Psychiatric Consultation. Renfrew's training programs have reached more than 25,000 healthcare professionals to date and are designed to enhance the knowledge and skills needed to treat these complex disorders.
I listed these, only because I think getting your food issues and digestive track, basic nutrition back are key.
You can do it. The only way to go is up.
Posted by jessicabooklover (Member # 39427) on :
Surprise, the Renfrew Center is the worst treatment facility on the planet. I was put there as a teen for severe depression and a misdiagnosis of an eating disorder (when I get depressed, I do not eat). It is the most horrible place.
I appreciate the links so much but I am not going to go to an eating disorder facility where they will tell me my problems with food are mental and not physical. My digestive tract is destroyed and I cannot do what is called an eating disorder day program as all they do is feed you **** tons of food in a short period of time. I know a lot about this as well because my best friend (who I met at the Renfrew inpatient facility in Pennsylvania when I was 16 ) did outpatient ED programs.
I will never darken the door of one of these places because I know they will not understand what I am experiencing, and I will be made to feel even more misunderstood and ashamed.
Your helping me means so very much surprise. Please do not mistake my frustration at the situation with ingratitude to you. I appreciate yr help so much, but an ed program would be a disaster. Jess
Posted by surprise (Member # 34987) on :
I'm just afraid Jess. Afraid if you continue to linger between 80-85 pounds... and you are malnourished
and you say you cannot eat. I don't know how else to fix the problem. I was thinking of an eating disorder clinic more in the terms
of: Yes, they can and know how to help severely underweight and malnourished bodies safely get healthy and running again.
There is a current story of PANS teenager sick with infections, and anorexia/severe weight loss-
The parents took her to Boston hospital, and because of the eating issue, legally took away the parents right of custody,
it being deemed a life and death situation, and that teenager has been there for months, on psych. drugs and the hospital is trying to treat the anorexia issue how they deem fit.
I'm afraid if you collapse, your new husband and father will be put upon to decide what to do-
Maybe what I'm about to write will be so controversial, I won't be welcomed back on Lymenet, but-
You have to fix this eating issue. You will not sustain this way, and I think that is what your last Dr. and some others have been trying to tell you.
So, how, right? Well, it hasn't been working left up to your own devices. I mentioned and suggest some sort of inpatient or outpatient program that
Is tailored to heal your body and mind from this issue. Find one, please. Because I truly believe once this base issue,
and, having enough weight and nourishment is a base issue to live, but once this base issue can be corrected,
you can then move forward.
Posted by Keebler (Member # 12673) on :
- surprise,
I don't know why you think what you write might be "controversial" as it just makes sense.
Jess,
When someone cannot take care of themselves, it falls to others to make decisions for them. And if they can't take care of that person at home, they are forced to place them in some kind of medical facilty and the patient likely will have no voice by that time as they won't be strong enough.
It's a very real possibility and one that could occur soon - if enough calories and nurtients are not consumed, a body just cannot continue like that.
This is very important to keep in mind, first and foremost.
Now, even if one (or more) of those eating disorders centers are not attractive, SOMETHING has to be done regarding a food plan that will work. Something, with some kind of professional.
I know that someone is there, a naturopathic doctor, an acupuncturist -- someone like the nutrition author listed above. But you can't assume there is no one who "gets it" because they are out there. But you have to look in the right place.
If not, then start with the book posted above. The website. Study it as if your life depends on it as, by the accounts you post, it does.
All this emotion is understandable and no one is saying it's not. It's important to realize that, due to malnutrition, all emotions and decisions are just going to be harder so do be kind to yourself.
Be very careful with the attitude that you don't matter, only your father or your husband do. They can't be responsible for YOUR life. You are. And you have a choice to make regarding not IF but HOW you are going to find the help you need so that your body can ease into taking in nutrients -- nutrients that decice whether your life itself can continue.
There are many ways - soups, smoothies, quinoa flakes, etc. So much as been posted for you over time but I do hope that you will make a concerted effort to find the right professional for your body today.
An outpatient clinic may be the only place where you could get the care you need. They vary, so don't assume all are like the one you were at years ago. And, now they will know about the gastroparesis - that's a huge improvement and will help them better design a program for you.
I'm the first say that "ensure" is not real food but if you can contact a naturopathic doctor, my guess is they will know of healthier places and healthier food options.
Help, life, may be one of the eating disorders centers that you've not explored. Find one who really knows about gastroparesis.
Be kind to yourself but firm. This cannot be ignored - and just discard negative thoughts that can hold you back, big time. Forget the past because if you keep dwelling there you won't have a future.
This is about being positive, looking toward life and what can nourish that life, and that starts with nutrition for our cells and our souls. -
Posted by Keebler (Member # 12673) on :
- I do not have gastroparesis but at times when I had the stomach flu, quinoa flakes were a great stop-gap measure and sustained me for a day or two at a time. I made with hot Ginger tea, just put in a mug, covered for a few minutes. Never even had to cook it.
Either "sweet" spices like cinnamon (and a touch of stevia) - or "savory" herbs like thyme can add to the flavor. Thyme and rosemary can also ease digestion.
Mint could also be added to help the stomach and add variety.
or - melt in a spoonful of a nut butter to the boiling water before you add the flakes for that extra "yum factor".
Make as "liquidy" for a drink - or as thick as you like, all the way to a hot cereal gruel. Just keep the mug covered so it can steep a little while.
First, mix the flakes into a paste, then add the hot water, slowly, mixing it a bit at first. Cover. Steep for 5 minutes. It will thicken but more water can be added after it "cooks" if you want it more like a drink.
Not on this page, but when I checked previously, I was delighted to find that although ground, the flakes still have an excellent glycemic index due to the protein and fat content. This should not spike blood sugar. -
Posted by jessicabooklover (Member # 39427) on :
An eating disorder clinic is somewhere that I refuse to go. I do not have an eating disorder. Why would I waste time and money at a facility that cannot help me?
And I am not mentally incompetent and I can still make my own decisions about my health..not my husband or father.
I am doing the best I can with food and am hoping by "stepping it up" dietarily that I will see some improvement. But I am done with drs and hospitals for now. Jess
Posted by Keebler (Member # 12673) on :
- How much TAURINE are you taking?
As mentioned before, being vegan, it must be supplemented. It's very important. Other things are, too, that you may not know about.
Gastroparesis IS a disorder of being able to eat. It is not a mental disorder yet there are emotional issue that come from that, of course.
Please search for a gastroparesis counselor. You may still be able to connect this afternoon and maybe they could suggest a certain book or site that you could study over the weekend. -
Posted by Keebler (Member # 12673) on :
- If you have a good blender:
Zuchinni, Red Cabbage, Mint (straight from a tea bag), Stevia, a few dark berries, a handful of "soft" nuts (pecans, walnuts) . . .
with carrots in my super blender, and water, of course, this was a delightful smoothie to start my day today.
If your blender is not too strong, you can grate the carrots and then add to the water in the blender and puree.
Something like this can make your cells very happy.
Cucumbers would be excellent to add as well.
If you have access to a VitaMix or a BlendTec (very strong blender) that would be wonderful.
Wear earplugs or decibel rated muffs when running any appliance that makes noise. -
Posted by jessicabooklover (Member # 39427) on :
Keebler, the GI dr I saw was the expert on gastroparesis for Norwalk hospital, here in CT. He told me that there is very little to be done for me with my gastroparesis because it is nerve damage from lyme.
No diet can fix it...I can only attempt to manage it as best I can, and that is on a day to day basis. There are certain foods that make it worse but pretty much anything I consume wants out of my system 15 minutes after I eat.
It is not fixable, sadly. This is my reality for the rest of my days unless some lyme treatment miraculously starts to work. Thanks so much for the suggestions. I appreciate the input enormously. I think my body has just decided to quit. jess
Posted by Keebler (Member # 12673) on :
- Is that GI and ILADS connected doctor? If not, I would not believe him or, at least in entirety.
So, then if you are to stop doctors, how are you going to educate yourself?
Just trying to eat what you can is not education enough in this matter.
How much TAURINE are you taking. Without that, nerves will die. Vegans MUST supplement. To be without it can cause so much damage.
You need to learn more about nutrition if you are going to try to treat yourself.
So, how much taurine are you getting each day? That's the first question to start with. -
Posted by Keebler (Member # 12673) on :
- This author was told similar things. She did not believe them. She became educated and is much, much better. Lyme seems not to have been involved but there is no doubt that her life was also in danger due to malnutrition.
Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life
December 2011 - About the Author:
. . . currently the only Certified Health Counselor specializing in gastroparesis management and one of very few health professionals with both personal and professional experience with the condition. . . .
The reviews are very encouraging. -
Posted by jessicabooklover (Member # 39427) on :
Keebler-I read that book. It was very interesting. I am taking the taurine supplement that the naturopath I briefly saw recommended. It is 250 mgs twice a day. Jess
Posted by Keebler (Member # 12673) on :
- Beyond that book, be sure to study her website and blogs. There is so much good detail there, too.
*** And, can you contact her to locate someone like her near you? ****
I hope you can keep up with the advice from the ND. If that ND was not suited to you, can you find another one who is?
Acupunture many help the stomach to work better as can visceral manipulation. Posted several times before for you, just go to the UPLEDGER INSTITUTE website and look for practitioners trained in VISCERAL manipulation. Some are covered by insurance, especally if a Physical Therapist or a Doctor of Osteopathy.
I know it may seem like a one-track record but I do keep focusing on a plan. Each day, you need to know how many calories you are getting and exactly how much protein, fat, carbs and then also specific nutrients.
It IS rocket science, in a manner of speaking. It IS science and it is MATH.
It's sure not just eating what sounds okay at any particular time. Although, of course, what sounds good and works helps but it can still perpetuate the malnutrition when a full plan has not been arranged.
At the stage your body is at, professional guidance is so important. Most NDs, even if not LL, know so much about nutrients and also about what supplements are essential.
If you can't process from your stomach, liquids may seem easiest - or even just using your mouth to absorbe what you can. A properly trained professional would know which foods may be best absorbed by the mouth and which liquidfied foods most advantageous.
I just hope you can find the guidance you need. -
Posted by Keebler (Member # 12673) on :
- Just one vital detail that a good ND or holistic nutritional counselor would know in setting up your protein intake for each day:
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. . . . -
Posted by jessicabooklover (Member # 39427) on :
Thank you Keebler. It is appreciated. Jess
Posted by Keebler (Member # 12673) on :
- Can you do this? Can you make some calls, see who might be out there for this kind of help?
Of course, it's 4:30 on a Friday afternoon in your time zone, still, can you reach out to find some professional plan?
Even during the weekend, you may be able to contact some supports groups for lyme and for gastroparesis and see what kinds of recommendations you can gather.
Cancer support groups might also have some names of holistic nutritional counselors. -
Posted by Keebler (Member # 12673) on :
- For a start, Google:
Connecticut, holistic nutritional counselor
Don't stop if you don't find one near you. Call the best ones in your region and ask their office managers for recommendations - or a professinal organization site where you can have a better list for your location.
Don't stop until you find someone with knowledge in this area.
Your state's organizations for naturopathics and for acupuncturist might also be a great place to see all your choices. Call the organization's key person and ask who's the best for nutrition for your needs.
Don't stop until you find someone who has already done all the homework so you can just do the plan. -
Posted by Keebler (Member # 12673) on :
- One more thought: I hope you are checking your blood sugar periodically. Low blood sugar can be just as dangerous as high, when continual.
Either continual low or high can damage nerves throughout the body.
You need to be sure that your blood glucose levels are in the safe zone. If you do not have a meter, you can likely get one for free (although the test strips can cost a lot).
Still, with a few strips you'd recieve with a free meter, you can see if there's a pattern.
Call your local Diabetes organization or see their website - even for the national group. I once recieved a free meter because of low blood sugar, not high. -
Posted by jessicabooklover (Member # 39427) on :
I check my blood sugar frequently. Thanks. Jess
Posted by marypart (Member # 27012) on :
Jess, I had gastroparesis, in 2011. It lasted about 6 months, so I was lucky.
I was wondering, if the nerve damage is permanent, do your doctors consider you to be a candidate for a gastric stimulation device? It's kind of like a stomach pacemaker, to make the stomach work and empty.
The only other thing I can say, is that pureed/ground up foods helped me, and betaine hcl with meals, and lots of digestive enzymes with every meal.
I'm so sorry about your suffering. Mary
Posted by Rumigirl (Member # 15091) on :
Jess, I know who the "LL" neuro you saw is (by inference). Unfortunately, he is no longer LL, unless you were just getting diagnosed and treated for the first time. In addition. he can be REALLY awful to deal with (believe me, I know from hard personal experience).
I didn't get to read all of these posts, but many of them, and there is some good advice here (disregard the advice that you don't feel is good, of course).
The advice to try an LLND is probably a good one, when you have taken a break from the blasted drs. Have you tried Dr. H's office? That may not be the place to go right now, but just wondering.
I am so sorry to hear what you are going through. I have been through not exactly the same thing, but similar enough, and have felt very similarly way too often.
There are other alternatives, like rife machines, etc. But when you are ready, it seems to me that an LLND is a way to start. There is one LLND in CT who is supposed to be good. She's written 2 books, Dr. M.
(My PM box is full, and it will be a day or two before I can likely clean it out, sorry!)
This is NOT the end of the road for you--you can't let it be. We understand, and we are rooting for you.
I am trying something new myself soon that may be helpful, but I'll have to try it out myself first.
Posted by Limeaid (Member # 22357) on :
What about giving your digestive system a long
break? How about a strict liquid diet? Do
you have a juicer? If not, you could get a good
one pretty inexpensively. By juicing, you could
get many nutrients. For fiber you
could do smoothies. Believe me, this works.
I had to do it for my Mom who had a gastrectomy
in the 8o's after her surgeon cut the wrong
nerve. She's had problems for 30 years, has
gone to every respected hospital and doctor
out there.Recently,I bought her a juicer & taught
her how to use it, with many different
combinations. It's hard at first, but she did
better after time. You say you just don't care
anymore, but yet you seek lymenet for help. I
know you care obviously, and want your life
back. Believe me, I have been there, & it
wasn't very long ago. I've spent 4 years
bedbound/housebound and now I'm back to working,
part-time, but I'll take it, at a profession
I love, but didn't think I would EVER set foot
in. Don't give up Jess!
Limeaid
Posted by Rumigirl (Member # 15091) on :
Sent you a PM. A warning: my PM box is full until I clean it up in a few days!
![[group hug]](graemlins/grouphug.gif)