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I've Had Enough, Just Enough. Looking for Best Doctor for Situation

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Posted 1/12/2020 5:40 PM (GMT 0)
NOTE: THIS IS NOT A POST TO READ FOR HOPE, AND I DON'T WANT TO DO THAT TO ANYONE.
Honestly don't think I can take another morning waking up with this. Been to the edge before but this time it is total hopelessness.
I am looking for a LLMD or any doctor/treatment who/which is best at complex Lyme/autoimmune/kidney/EBV situation. The kidneys add a whole new world to limiting treatment.
The doctor/treatment I am looking for many not exist, but if anyone would knows, it's someone on this site. I do not feel sorry for myself or feel my situation is worse than others on this forum. I simply know with all the elements involved, most LLMDs still can't help. And I have tried and tried to help myself for years with no luck, especially since heart surgery in 2016.
So does anyone have a suggestion on which doctor/place would be best to see that will look at all problems involved and have a clue how to go forward? I woke up this morning and just fell apart. It's been building since I felt a little better around Thanksgiving then all went to -----. Have had enough. Have tried all I can.
I'll go wherever I need to go, with or without insurance. Saving money is no longer a priority as having any money is useless when you can't live life and there is no life.
Is there such a doctor out there? Stem cell possibilities? I've looked into Hansa Center, which is supposed to open another location in Nashville, TN this month. But being isolated in a hotel for a couple weeks may not be good in my current mental state. My kids work and/or go to college, so having them go is out.
This can't go on much longer. Just can't. Tired of fearing 8:00 am every morning when anxiety wakes me up like an alarm clock. Tired of crying like a baby for no reason. It just happens. BAM! Tired of living "lifeless," worn out with thinking, sick of watching fat disappear on my body, dread autoimmune reaction when going out in any sun, have had enough of worrying about kidneys and tremendous food limits. Again, just have had enough.
I would apologize for the deeply negative tone of this post, but I'm even tired of apologizing. Don't even know you but find you to be the best friends a person with Lyme and whatever can have. And your all are that.
Any solid ideas are appreciated.

Post Edited (running wild) : 1/12/2020 11:08:04 AM (GMT-7)

Posted 1/12/2020 6:33 PM (GMT 0)
No apologies necessary! Vent away. This slog is brutal sometimes. Most of the time.

The name that comes to mind for me when I think about complex cases is NN in California. Not sure if he's taking patients.

Sadly I don't know how exactly kidney disease comes into play aside from that I imagine they are a huge consideration when adding ingested treatments to a taxed system and might make detox tougher. Does it help to avoid ingested treatments (so trying something like rife and PEMF)? Even with no kidney issues, sometimes any ingested treatment is just too much for me and my systems all shut down for a while. My instinct would be to opt for nothing ingested, so sticking with acupuncture, rife, PEMF, biofeedback, infrared light, BVT, etc. but again, I have to real knowledge of the ways kidney disease hinders treatment.

I wish there were a way to hear from people who have been to the treatment centers, but as far as I know they make patients sign documents agreeing not to disclose treatment protocols or publicize outcomes. If anyone knows of any accounts online that are candid, please let me know! When I looked into the Institute for Restorative Health (very similar to Hansa) they referred me to patients who had done well there, of course, so I can't tell how much bias is involved in the recommendations. I also liked the idea of Hippocrates in Florida, but it's the sort of place that one has to be fairly functional (can walk from place to place, sit in a chair for an hour lecture, participate in a gentle yoga class) to take full advantage of. I love the idea of turning everything over to someone for a few weeks though, right? Seems like a relief to turn over the reins and not have to worry about figuring things out for a while.

Hope you get some helpful replies. I know you have been working on unraveling the complexities of your case for ages now. It's exhausting to live that way!
Posted 1/12/2020 7:42 PM (GMT 0)
running wild,

So sorry about your current situation. It is a terrible spot to be in, and, unfortunately, many of us have been there, too.

As a last resort, I recently went to Columbia University Lyme Evaluation service in New York, and am so glad I did.

I know there are some folks on this site who have not had a good outcome with them, but for me it was SO helpful. I'm just sorry I didn't go there years ago.

It took a long time to get an appointment, for me it was a lot of travel, and it is very expensive. It was well worth the time and $ in my experience.
Posted 1/12/2020 8:29 PM (GMT 0)
running wild

I have no words that will help you to feel better - I wish I did.
No apologies needed - as I can totally relate - been in some dark places myself.

This disease is nasty and wears down even the strongest souls.
Keep pushing, searching - just don’t give up. you will find the answer.
Posted 1/12/2020 9:18 PM (GMT 0)
Thanks for your responses. Much appreciated. In this Lyme venture, which started 17 years ago, I had some decent years after the first few. That led to hope, then a bad turn in late 2011 until early 2015. Was happy at 80%-85% for about 1.5 years until the heart surgery mentioned. It's been slowly getting worse since, with a 4 month improvement once.

Then there was no EBV and had not recognized kidney problem. Now autoimmune. Looking back two years, I think autoimmune has been going for two years but thought it was Lyme. I've always been a battler and positive in life, but this has me totally void of that. I dread going to sleep each night because of what is coming the next morning at 8:00 am. Almost to the minute.

Last hope is to find someone who can deal with all going on. I've learned in this there is so much contradiction in treatment and then those who take advantage, monetarily, on those sick, there is no openness or solid answers.

saraeli - the kidneys create a contradiction because so many medications and herbs stress the kidneys. Also, protein stresses them also. Then you have to be careful about how much potassium, sodium, phosphorus, calcium, etc... you take in. I've looked into the centers you mentioned and will go back again to reassess. Thanks.

mareish - Do you have to test CDC positive at Columbia to receive treatment there? And do you happen to know if they deal with autoimmune aspect? I can call tomorrow to see, and thanks for that idea.

Girlie - thanks for simply being Girlie with your support. I feel weak throwing out what I have online and do not want to discourage others.

If anyone has experience or knows of anyone's experience at a center or doctor, feel free to email me if you do not want to put names out online. Again, I don't mean to bring anyone down, but I've hit the most desperate mood I've had ever had.
Posted 1/12/2020 10:01 PM (GMT 0)
Running wild I’m sorry my friend, this is very heartbreaking.

What diagnosis did your nephrologist give you? Did she have any advice? What are your kidney symptoms?
Posted 1/12/2020 10:43 PM (GMT 0)
running wild,

I think they see plenty of patients who are not CDC positive. Also, they don't treat. They perform very comprehensive history taking and testing. Most detailed visit I've had.

Based on symptoms, history, test results, etc they give recommendations.

Have a look at their website.

Hang in there!
Posted 1/12/2020 10:47 PM (GMT 0)
I’ll see what I can find.

I found this on Dr. Cameron’s website. He’s in New York if you’re not familiar with him.

https://danielcameronmd.com/doctors-recognize-lyme-disease-in-a-patient-with-kidney-disease/
Posted 1/12/2020 10:49 PM (GMT 0)
What are your most debilitating symptoms?

Also, what protocols or treatments have you tried.

If I’m correct you have really bad anxiety, paralyzing?
Posted 1/13/2020 12:30 AM (GMT 0)
I hate that you are going through this, I feel you, we all do. Not knowing what you have tried or done, I can only share some of my experiences or thoughts. Last May I was exactly where you are with exception of kidney issues. My numbers crazily went out of range often enough but was always able to change up things and detox them back in. I had seen so many doctors since 2013. I re-tested again at igenex and both Lyme and Bart came back positive Lyme was CDC positive this time, so by now some was auto immune but obviously the bugs were back in full force.

I started seeing Dr. Harris in San Francisco (his father founded Igenex) because I wanted to put it all under one roof too. I needed the relief of just knowing that someone else was driving for once. It's been worth the travel and expense to get me to the next level. It's not a one stop shop and you still need to rely on your own knowledge base to some degree but his years of experience and wisdom are amazing. I slowed down and began fixing one thing at a time, I think the two that had the most impact on starting to make a difference again were I worked getting my adrenals and cortisol levels under control (I used HAD homeopathic adrenal drops by Pure Formulas, I was amazed at what a difference it made by the time I was done with the bottle) and second was my emotional state - depression, huge anxiety, constant crying, rage, hopelessness - I started Cymbalta which also helped with the nerve pain. Those two things alone after everything I had tried were game changers. I think I reduced the stress in my body enough to give myself a fighting chance. Have you addressed things like mold, parasites, other viruses? How is your diet and detoxing?

Sierra Integrative Medical Center in Reno, NV Dr. F - I know of two acquaintances who have gone there with pretty awesome results. This is an all inclusive clinic. He is a DO who sounds like he is highly respected in the Lyme community.

You mentioned stem cell, Lyme Mexico is also on my radar. And if I fall again, that's where I'm headed. Omar Morales has created this clinic in Puerto Vallarta and it is an all in one. He is the head of the ILADS for South America. It is lymemexico.com. The prices are so affordable compared to the US.

I hope your day got improved and that you are feeling better.
Posted 1/13/2020 1:09 AM (GMT 0)
So you all will know, I feel for anyone on this site. Not that we are all pathetic, but the stress of finding answers, the lost days of life and relationship strains are just some of the challenges we most all share. Add in the "island" feeling you may get when you live alone or a lot of the time alone, and it can get to everyone. As a coach and guy who tries to motivate, I find myself in a very odd position with all this - lack of hope.

Your answers are much appreciated, and your ideas, and I'll respond, in no particular order to each as it may help someone else who is looking for same answers.

The nephrologist, of course, discounts Lyme, so I stay away form that. He is very good with blood pressure, and I'm trying to find another who can look more into the possibility autoimmune is playing a role in kidneys. I've had Stage 3 kidney disease for at least 6 years, but did not have it before 2013, when I was diagnosed with Lyme after 11 years of no answers. Had I not mentioned it about 18 months ago, they may still not be looking into it, even though my tests clearly showed a problem. I've changed my diet, which means it's even more restrictive. High protein, which I had been using to keep weight up more, is not good for kidneys. Symptoms are simply a higher creatinine count,which lowers GFR (how well kidneys filter).

It is confusing what is caused by Lyme, autoimmune or kidneys. That is what I'm seeking answers to.

Worst symptom is the one what has been around since the start in 2002 - fat loss. It doesn't impact muscle. But major fat loss. Right there with it is the anxiety/depression/crying. I wouldn't describe it as paralyzing, except in the morning. It lessens as day goes on but is always there. Low back pain has been consistent for a year now, which takes away any light running, as does a weak immune system. I do lift light weights and do push ups in morning, along with stairs. But running miles and racing was always my best stress reliever in life. It's like losing part of your being.

Afternoon fever brings fatigue, which has gotten a little better with monolaurin. But it seems to be getting worse again. Migraines seem to be related to foods I eat. Sugar can really set that off, and I have cut so far back on sugar and gluten. I'd say I've cut by 90% but need to get to 100%. But how and still keep any weight?

Thank you for the information on Columbia,Dr. Cameron, Dr. Harris and stem cell clinic in Mexico. I will make calls tomorrow. I've tried herbs, medicines and even have a rife machine. My frustration with using the rife has stressed me as I have something sitting here doing little to help due to my ignorance, despite trying to figure it all out.

UpBeetLiving - has the treatment continued to help you? I took Cymbalta years ago and it helped. Not long ago I tried it again and did not have a good reaction to it.

I do not like to make all this about me, but desperate and maybe others can see something that helps them. You are all appreciated. Something's got to give. I do not want to die, but have no urge to live rest of my life like this. Getting better is goal, but hope really has faded. Does that make sense?
Posted 1/13/2020 1:22 AM (GMT 0)
Doctor SP in CT is supposed to be really good. I'm not sure if he has had experience with kidney issues though.
Posted 1/13/2020 1:36 AM (GMT 0)
If you come up to NYC to Columbia, please take a trip to New Haven/Orange while you’re here and see Dr K. He is as smart as they come. When you talk to him you will realize quickly how sharp he is. Professor at Yale for 20y, testified in front of senate on Lyme, multiple patents. A colleague who had been to see EVERYONE in the New York/New England area was like this guy is the sharpest, that’s how I found him. His office can be a bit quirky w responding to emails and you’ll pay out of pocket though. He’s not a kidney specialist he’s a neurologist and an LLMD but my guess is he will either know what’s up, or know who you should see.
Posted 1/13/2020 3:36 AM (GMT 0)
running wild,

So sorry you’re feeling like you can’t take it anymore. We all go through times where we’re just worn out and desperate for something to change.

I hear you about wanting a doctor or clinic - the best one for the situation. I still would suggest being evaluated for mold first. Did you ever get the mycotoxin test from Great Plains or Realtime Labs?

If mold is an issue, spending $$$ going off to see a top doc or a treatment clinic isn’t going to solve anything if you return home to a moldy environment. I know mold is complicated and expensive to figure out and deal with, and it’s something anyone would rather avoid unless absolutely necessary. If it’s an issue though, prolonging the agony is time lost.

As far as finding the right doctor or clinic, think about who you think you would want to see or where you think you would like to go if kidneys were not an issue. Come up with a few options and call them and talk to someone about your issues. Feel them out to see if you think they are a good fit for your situation. Ask how they treat patients with kidney problems.

If Lyme/co affect kidneys and have anything to do with your kidney issues, then I would think the experienced LLMDs who have treated thousands of patients over many years would have knowledge and experience with patients who have kidney issues and would know what to do.
Posted 1/13/2020 4:13 PM (GMT 0)
WBF - I looked at both the Great Plains and Real Time tests this morning. Is it the myotoxin test to order? Price at both are similar. Also, RealTime says it will have results within 10 days. Urine test best? Thanks for your words of encouragement and ideas. Have never been this far on edge with it and can no longer deal with life as it is. Something's got to change.
Posted 1/13/2020 4:28 PM (GMT 0)
Good morning running wild,
I too get the alarm clock with the anxiety EVERY morning. It's been going on for far too long now.
It comes with depression and crying and a general seance of doom gloom and a feeling of malaise.
It lasts for hours. It lifts in afternoon.
I'm also plagued with on off brain fog as well as on off nausea.
I was wondering if you have been able to attribute the alarm clock to anything in particular.
I'm thinking of the possibility of:
Hormones- adrenal function( testing this w saliva test)
Perimenopause ( more hormones)
Infections ( most other symptoms seem to come and go this does not.)
Or infections causing hormone dysfunction
Or mold. I have high level mycotoxin ochratoxin a. ( but it didn't go away at all when I travelled for two weeks) . And it's just so much like clockwork, like a waking up clock. So I go back to hormones dysfunction.
Looking for way out.
Hope you find one too.
I did Great Plains lab.thats what my natro offered.
Posted 1/13/2020 4:31 PM (GMT 0)
Just to throw this out. There is LLPA AW in Asheville, NC. With her own practice, she deals with more than just Lyme.
Posted 1/13/2020 4:43 PM (GMT 0)
ChristianWithLove - Thanks for information. I looked online and couldn't find it under LLPA AW in Asheville. Is there a doctor's or full clinic name you could email me?
Posted 1/13/2020 5:10 PM (GMT 0)
Yes, just sent it.

Post Edited (ChristianWithLyme) : 1/13/2020 10:13:43 AM (GMT-7)

Posted 1/13/2020 5:56 PM (GMT 0)
MycoTox Profile is the name of the Great Plains test. I have done tests from both there and Realtime. Great Plains was cheaper and tested for more toxins and provided a lot of good information in the report.

Urine test. My doctor advised taking 5 tsp of liposomal glutathione an hour before the test to help release mycotoxins.
Posted 1/13/2020 7:48 PM (GMT 0)

Somebody said...
UpBeetLiving - has the treatment continued to help you? I took Cymbalta years ago and it helped. Not long ago I tried it again and did not have a good reaction to it.

Yes, but it was the beginning of what I did when things got that bad. I started the Cymbalta slowly, and the adrenal blend at the same time. After I got more stable - hormones, adrenals, emotions - I continued on with treatment and went back on abx and herbals. You mentioned fat loss, it's funny because I sometimes gauge my health or progress on that. I am 5'6 and got (and stayed) down to 118 for such a long time. When I started making progress, some of the weight came back. I have gone through this a few times. With all the emotion/psych stuff I knew since our brains are so much fat, that fat loss had to be affecting it. I started doing Phosphadtidyl Choline IV's weekly for a few weeks and then moved on to PC supplements. I use Bio Body.

I don't know if this helps, but in 2017 I had two back surgeries, the latter was a fusion of L4/L5. I spent almost all of 2018 in all states of relentless hell. I changed doctors in June and added in all that we have been talking about and in late November finally started to make some progress. So hope for you too, right? I know it's way early in the game for me but I'm keeping the faith!

I agree with WBF, finding out will only be helpful no matter how the tests come back. I did the MycoTox Profile with GP several years ago. Luckily mold wasn't an issue for me but my ND at the time insisted that we find out. It was good to check it off the list, I'm hoping that for you as well.

What type of a coach are you?
Posted 1/15/2020 12:01 AM (GMT 0)
UpBeet - You have been through a lot. The surgery on your back must have set you back. I have not been able to come back since heart surgery for aortic valve replacement in mid-2016. Glad you have improved some since your back surgery. Trauma like that on immune system can wreak havoc.

I am trying to get my doctor to order the mold tests. I don't think that is what it is as I have about totally remodeled the home I live in now. I did work in an environment for almost four years where which I believe was a mold trap. It was under the football stadium at Kennesaw State University north of Atlanta. Leaks in parts of building because of shoddy construction, and our office had no windows. I coached track and cross country there and am glad to be no longer coaching DI. My first time coaching there was in the mid-80s when it was a college of 6,500 students. Now it is 35,000. Love coaching high school kids.

But there is no doubt that building must have had mold, though I don't know if that would impact me a year after leaving.

Thanks for the information on losing and gaining fat. I have lost so much - but no muscle loss. This has been ongoing since it all started in 2002. When I felt better off and on for about 5 years total, it seemed to get better or stop. Now it has gone crazy. My weight went from 173 pounds to now 151. Some of that is not being able to eat much because of reaction to foods or problems it can cause with kidneys, bacteria or autoimmune. People say "just eat a lot." Ya think? Only people here get it.
Posted 1/15/2020 1:36 AM (GMT 0)
Mold can impact people for many years after exposure. Some mycotoxins, particularly Ochratoxin A, are well-known for causing kidney disease. A urine test from Great Plains can confirm whether that's what you are dealing with.
Posted 1/16/2020 2:15 AM (GMT 0)
I'm trying to get my PCP to order it. Might as well rule out all I can. All these issues began years and years before I worked in office under stadium, but who knows? This way I will know. Also trying to go see doctor in Dallas, TX who is one of few experts on fat loss (lipodystrophy or lipoatrophy) in United States. My insurance will not cover out of state, which is absolutely absurd. I have to appeal that, which I am doing now, as he is one of only a couple who deal with it.

Things just getting worse each day recently. Not sure what is going on. Thanks.
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