My 1St Appt W/New Family Inegrative Doc

[hilbiligrl]

Hi all!

I just wanted to share about my first appointment with my new doc. He is my new primary doc, (i had fired previous one of 10 years) and he (the new one) practices integrative methods/treatments, etc. He carries a reknown reputation for helping those with rare cases/diseases. Luck was on my side monday morning, cuz only 2 patients showed up for their appts with him, another person and myself. So, I got to spend almost 3 hours! with him talking about my symptoms, and my whole 'mystery illness'.

I had already typed out a 3 page 'info packet' with a description of my illness and a list of symptoms (which happened to be over 50) and gave it to him after we talked for a few mins, but he didn't get a chance to really read it over since we were busy talking to each other. But he seemed to be grateful that I had brought it. In it i had mentioned my most troublesome symptoms and goals for them. I also had wrote what I suspected myself to be checked for which was : MCAD, connective tissue disorder, elhers danlos and the hughes syndrome. But again, he didn't get to read it.

However, After discussing my symptoms for a long while, and after i briefly mentioned what Vanderbilt has said it being dysautonomia...... he responded warmly and seems really interested in what's gonig on. As i was speaking to him, he was thinking and writing things down and then he started out of nowhere (before i even mentioned it either) that he was suspecting connective tissue disorder, elhers danlos.... and then he looked at my bottle of zantac and zyrtec and he said 'looking at those two meds make me think mast cell activation disorder..... When he said those 3, I lit up like a xmas tree and he said 'oh, you know if them?' and i said yes, i had bee suspecting them as culprits too and he asked if i had the hypermobility and i was showing him my thumb supermobility and others before he could finish asking. Its seemed he picked up right off on many things. I also mentioned i wanted to be tested for hughes syndrome as well. (thanks to that article that was posted aobut a week ago).

Im my 3 page info, i included links to the ndrf handbook on dys and also gave him links to a few other articles posted on here about the chronic fatigue, etc. He seemed excited to read it. I was just completely shocked that he knew abvout the connective tissue and the MCAD, but he didnt know about dysautonomia or pots. So, he said he would read into it and wanted to be apart of the vanderbilt exeperience and talk to Dr. Raj himself. So, goody that he insists to be involved and learn about it!

He does agree that it seems to be a cns/ans damage/malfunction of some kind that he didn't think a cure would probably found. He said it was his feeling that is it a physical thing that most likely cant be fixed but hopefully the symptoms could be controlled somewhat. He is wanting to do a 4 test adrenal test and suggests some acupuncture just as a start. He did mention, for a try at anxiety, that I could try a herbal product called "gaba' which is suppose to add needed gaba in the brain to calm us down (like a benzo works on gaba receptors)..... and he also wanted me to try Doxepin, he seems to think its an H1 and H2, but i only think its an h1 for mcad. Hey macks mom: if the doxepin is only an H1, then should i not continue to take the H2 with it? He seemed to state that doxepin could take the place of the zantac and zyrtec. Does that make sense to you? Also, macks mom, or anyone, how do they test for mcad again? and the connective tissue disord?

I am very excited as he made a statement that indeed i was a very challenging case to figure out. But, he will try his best and he is thankful for the research i could do and give to him, as he will be doing the same. So, for now, im to take the doxepin for a week or 2 and see him again and see if there's improvement and then, we will talk about what he has learned about DYS AND POTS.

So, i could tell he believed me and it seems he's intrigued to figure this out, but again, stressted that he or other doctor probably may never be able to pinpoint which comes first, what causes which and so on and so forth. He listened well, spoke well, excellent eye contact and was very into 'leanring about my mystery case' and seems determined to figure this all out.

So, so far, I am impressed. He and I were both impressed that we each knew about the mcad, ed, ctd..... So, right now, he's going through the 3 pages of info on me and reading up about DYS and POTS.

Let's hope he keeps up the good work, as it seems I have a motivated doctor to look further than all the others. I guess i'll see how much he learns by time i see him again in less than 2 weeks.

Has anyone been on doxepin for mcad?

Yep, the appt went absolutely great! He seems to be very caring, understanding and very realistic and wanting to help. Let's hope that those strengths of his dont fade.

many blessings,

hibiligrl

[sue1234]

Treasure that visit, as they are rare! So glad for you, and keep us up to date on how it's going and how the Doxepin makes you feel.

[Christy_D]

Hilbiligrl,

My son takes Doxepin for his POTS. It has helped with a lot of his symptoms. It took a while to find the right dose and he is now maxed out on how much he can take. It makes you tired, so he takes it at bedtime and now he no longer has insomnia, which he suffered from for well over a year. My son still struggles with horrible nausea, and if we could get rid of that he would be back at school and functioning almost like a normal person.

He has been on doxepin for 15 months and the symptoms it has controlled for him are: abdominal pain/cramping, hot spells, 'licorice' legs(he sometimes couldn't walk), heavy head and insomnia. That taken with fludrocortisone, which has his dizziness under control, has been a big help. He still seems to walk into walls and occassionally has the abdominal pain, but the darn nausea persists.

He started out on 40 mg and now is at 175 mg a day. Each time we increased the dose, he saw progress. I hope it helps you as well. We just started with a new specialist for my son, a neurologist, who is a local doctor(no more 9 hour drive to Cleveland) and I asked him about the doxepin- he said it is a drug he uses to treat POTS also.

Christy

[Sarah4444]

I am so glad to hear about your appointment going well!

Regarding your questions about MCAD, if you want I can email you an article re the latest testing. It is a very controversial and poorly defined illness, and they haven't worked out all the details yet. In the meantime, I have found doxepin very helpful. Many MCAD patients can only tolerate small doses. I seem to do well on 20 mg at night. I also read the other day that it is both and H1 and H2 antagonist.

Regarding the connective tissue disorder, I saw a geneticist up here who wasn't able to diagnose me, then ended up going to Baltimore to see Dr. Clair Francomano, who is one of the world experts in the field. She is wonderful and I am able to continue to see her with phone appointments. She is interested in the connection between mast cell disorders, POTS and HDCTs that is beginning to emerge.

Just a note, I don't know if it's because I am just beginning to learn and get a bit better, but I find the MCAD meds a very delicate balance. Don't get discouraged.

And Christy - I had really awful, disabling nausea for about a year and a half. It seems to have been helped a lot in me by Zantac 150 mg am and pm, and I think the oral sodium cromoglicate is also helping. I haven't had nausea for a while now.

[juliegee]

Share the name of this National Treasure- an open-minded doc who wants to help!!!!!

Sarah's answered your questions beautifully. Doxepin is a great drug for MCAD when things are really out of control- especially when the sympathetic nervous system is in overdrive (anxiety, etc.) I have taken it for several month periods (intermittently) when my symptoms flare. It is an old-fashioned antidepressant, with H-1 and H-2 properties. If you also deal with GERD symptoms, which can be a part of MCAD, you may need to supplement with ranitidine. Doxepin made me tired, which works fabulously if you take it at night During the day, I felt a little dulled, very content, and my appetite definitely increased. A dosage of 20mg, taken at night would be quite reasonable. (The dosages Christy's son is taking are VERY high and unusual for MCAD treatment...but I know have been a godsend to him.) Be sure to try ONE new drug at a time in the lowest possible dosage so that you can really measure it's effect- good or bad on you.

Acupuncture worries me if your sympathetic nervous system is overly active. It will further excite that- NOT what you want. Accupressure may be a better choice to calm it down.

I know I should remember this, but WHY are you also worried about Hugh's Syndrome? Do you have symptoms? Many patients who've never had an overt thrombotic episode do fine with aspirin therapy- just a thought.

Once again, your new doctor sounds fabulous. We ALL could use him as a primary care doctor. Is he covered by your insurance? How did you find him?

So happy for you!!!

Julie

[Sallysblooms]

I am glad you have a good integrative MD. I have a good one and I have made wonderful improvement with CFS and POTS with ony supplements. I hope the future is wonderful and you continue to work well together!

[Sarah4444]

What is an integrative MD? I don't think we have those in Canada.

[Lovebug]

Hi Julie! I'm currently taking Celexa (very low 2.5mg dose) that I began in November. I started it for abominal pain & IBS symptoms. However, the pain & symptoms are creeping back (only 2 months!!!). Do you think I should ask my doc about Doxepin as an alternative or maybe even an adjunct to my Celexa? Ironically I also have GERD.

Hilbiligrl...I'm so happy for you!!! I can tell by your post how "lit up" and happy you are to have found this doctor. Good for you and continue to let us know how things are going.

[hilbiligrl]

Hey all!

sorry i'm slacking on the replies, but as Mack's mom says, the doxepin definitely makes you more tired, ugh.... soooo slugish. He started me out on 25 mg and he said it might knock me out, so take it at night. Wellllll....... i tend to be paranoid with all meds... so i wanted to take it in the morning with no other meds and see how i done during the day, that way, if i had a freaky reaction or didn't do well, then i would be awake so I would know. I first time i took it, WOW..... nothing has ever knocked me out, other than anesthesia, like this med.... no sleeping med has ever put me to sleep or hardly made me sleepy (ive tried em all), so I was surprised this simple doxepin could give such a powerful punch. I am now taking it at night cuz it does make me quiet sedated, (i can fight it though, but since taking it at night now, i lay down after an hour or two and sleep till about 8 am). I think we might jump back to 10 or 20 mg though, when i go back in a week cuz it sure is making my nausea even worse.... im hoping this will pass.

My doctor is a family doctor. I had learned about him about 3 mths ago when I went to a psychologist appt for social security disability, and the psychologist was so wonderful. He knew about dysautonomia but not POTS. When we realized i was one very complicated case, he told me to seek out Dr. Reid Blackwelder. As an integrative doctor, he looks at things from many perspectives that most docs don't even consider. Number one being: that those of us posing a weird case are telling the truth and that it's not a figment of our imagination. But, being integrative, he is into chinese stuff, yoga, meditation, as well as all conventional methods with meds, etc. He treats the mind AND body, not just the body.... i think that's how he put it. He also states 'that he thinks all doctors should start accepting less patients in order to spend more time with them.' He is 51, and he also is a professor at our local medical school (quillen college of medicine) in Johnson City, TN. His practice is in Kingsport, TN (you can google him and you'll see a pic of him on ETSU's website). He reminds me of a hippy.... mind kind of person!

In our area, he is seemingly well known and well known for being a 'rare case doc' as well as a 'chronic pain specialist' and he has goten awards and articles on him, etc..... He doesn't accept patients anymore, but he will screen 'rare cases' to see if he can help them. I was able to call his office and talk to a nurse and explain breifly wat was going on with an 8 yr long mystery illness and what vanderbilt has stated. So, they allowed me to submit my case and called me 6 weeks later informing me that he agreed to take on my case. This past monday was my first appt with him and what a breath of fresh air!

I just hope he doesn't give up on me/my case. Cuz he was really sweet, and attentive. I left him with websites and articles to read (not but a few so i didnt overwhelm him), the first one being about dysautonomia.... and a few others. I can't wait to see how he responds when i go back. BUT, he wants to be involved with vanderbilt and all other docs on my case for that matter. It's kinda funny, cuz the doc i fired is in his 'practice group', but he is at a different office.

Mack's mom: I had read your articles that you had posted on here regarding CFS, and the hughes syndrome, etc. I gave him those two articles that you had posted. I am not sure if i would be a likely candidate for the hughes syndrome, but for years phlebotomists have told me i had really thick blood and many times they have had to go to bigger needles just to get blood drawn and still have problems. Seems like it happens alot when iv's and bloods are drawn, and i have alot of the symptoms described.... but those syptoms coincide with the dys, pots, mcad, connective tissue, mvp as well. I meant to reply to your post and say thank you for the enticing info articles, cuz i sure used it. Dr. blackwelder asked me if i had thought I might have CFS and i told him for years that I didn't think so.... I had always thought I was much more worse and way tooo many severe symptoms.... and I see fatigue as different from exhaustion. I.E. 'fatigue' that people think of, to me it seems to be after some sort of excersise, long day at work and 'fatigued' at the end of the day sorta thing.... but my 'fatigue' is not like that. I am in a constant state of phenominal exhaustion from nothing, around the clock... i can even 'feel' the exhaustion in my body while im sleeping! I had tried an exercise program in the past for about a year, but never improved in symptoms, only in physical strength. He also made the all time ' oh no, you didn't go there' statement for me..... 'if you are so exhausted, how did you get up and drive yourself here?'..... it always ticks me in the wrong way BUT when he asked this, I culd tell he was just trying to understand this wicked puzzle.

He also wants me to get the 4 strip adrenal function test at our local health foods drugstore.... anyone else done this? It's like 170 bux here, so i have to wait till the funds come in. ( i had begged previous doc to test my adrenals for possible adrenal failure, but she said adrenal failure itself wasn't possible in my case, she also stated that there was no test that exists to actually test the adrenals????? i believed her at the time)... funny, it's one of the first things new doc wants to test.

He did ask about a connection from the breast implants but i pointed out that this has been going on since feb of 2002 (my first episode landing me in the hospital with a bad case of mono... took 9 mths just to get back to basic functioning at home.) But the implants weren't done till just 2 and 1/2 years ago during a 'remission' period and well, my episodes have been well documented for a good 8 years now, so he eliminated that quickly. (i also previously asked for testing me for chemicals, toxins, and arsenic just to make sure it wasnt the implants (silicone shell but saline fill)... and to make sure no one was poisoning me (you never know)..... and all those tests were fine many months ago.

He also wants me to pick up some 'Gaba' while in there, which is im guessing an herb maybe? We talked about how well i respond to klonopin, so he said to try that cuz it replaces Gaba if Im not producing enough of it? I guess we will see if it works somewhat like a benzo........

I never really thought i had a chance at Dr. Blackwelder accepting my case

I better get, I gotta get to an echo and get set up for a holter monitor for the weekend.

Thanks everyone! If i missed a question that was asked, i'll re-read and post again later after my echocardiogram.

Im glad to know that doxepin is both and H1 and H2... i was worried, cuz i keep searching on the net and coming up with some articles saying its just an H1 and other saying its a strong H1 and H2. Even my pharmacist said he could only find it was an H1..... ??? I had a little spec of curiosity when i happened to read up on H3s and H4 drugs and that they can effect energy in the body, perhaps the ATP process..... not sure though..... but has me 'hmmmm'-ing .....

Mucho blessings!!!

tennille

hilbiligrl

[hilbiligrl]

I always forget something.... on the CFS, after reading the article that Mack's mom posted, it made me see CFS from a different point of view, so I told the new doc, that the way it's described in those 2 articles, that it sounded very possible indeed. Amazing how the CFS, dys, pots, mcad all kinda overlap each other and that we can't find the instigator of all these....... also, I had a good thought..... maybe my new doc can teach his student docs about Dysautonomia and Pots and Mcad..... maybe having a trickle effect in knowledge that it exists and is possible..... cuz no one around here sure hasnt heard of them, including him... until i came along. Food for optimistic thought......

[Sallysblooms]

We lived in Kingsport for a few months. I LOVE IT there. The whole area is wonderful! We traveled all over the area.

I hope you have continued success with your new doctor. Keep us updated!

[dianne.fraser]

Tennille - it is so heartening to hear about the positive experience you've had with this doctor. Keep us posted on your progress!

With best wishes

Dianne

[hilbiligrl]

sallyB ~ that's so amazing! What a small world we live in indeed! What area of kingsport did you live? I've only went out of state to live for one year many yearsa go, (went to Kernersville, NC) and even though the scenery was even more beautiful, Im a homebody at heart. There's no way i could move from home.... but i LOVE to travel, but don't ever get to. Wow.... that's so neat that you lived here in the same city as me!

Dianne and everyone else ~ thank you! Im tickled to pieces, but Im still afraid to let my guard down....... let's hope he's a keeper!

tennille

hilbiligrl

[issie]

GABA is an amino acid that is a neurotransmitter and helps to calm anxiety. It works wells for some - although not for me. Hope it helps you. You can look up nearly anything on wikipedia - it is a great resourse for info.

I was wondering what the name of the test is for the adrenals - who is it by and how do we get it?

I'm on the search for a doctor just like the one you are seeing. Wonder if there are any in Phoenix, AZ. If anyone has run across one - let me know. I'm definitly into alternative vs. convential medicine. Rather go that route - I think its more in tune with the body and less in tune with chemicals.

[cordellia]

so wonderful to hear that you have connected with a interested,, open minded and caring doctor. i wish this for each of us. an intergrative approach appeals to me intellectually and emotionally. we are searching for the same here in boston. there are several centers that offer a combined approach. will happily share our findings if anything positive or useful emerges. blessings in your path-cordelia

[sue1234]

When you mentioned adrenal testing X 4, that made me think it is most likely the saliva adrenal test. As we have talked here before, I am PERSONALLY not so sure of the testing.

My salivas over the last 10 years ALWAYS show low cortisol, but EVERY conventional test for adrenals have shown normal and one high! I have had "natural" doctors offer me cortisol freely. Ten years ago I took a loooowwww dose for a month, then got scared that I would harm my adrenals, so weaned off. I have been reluctant to ever take them again even though the "natural" doctors have told me my saliva says I need it. The adrenals are such a sensitive area to treat, and if taking not needed cortisol, can risk shutting them down permanently, necessitating cortisol for the rest of your life. Not to mention that any stressors can put you at risk for an adrenal crisis, which can be life threatening.

There, i said my concerns regarding saliva cortisol. I don't want to come off as being negative about your experience--not at all! Your doctor sounds like a dream so far. But IF the saliva test comes into play, I want you to be aware of what all it entails. After 10 years of being faced with this "adrenal fatigue" issue, I have been reluctant to treat something that is not acknowledged by conventional medicine. It is not like trying thyroid meds to see if they help, and if not, then just quitting and they thyroid picks up its job again. The adrenals may not "restart" again and that's what has stopped me.

They may find in the future that all this is valid--I actually wish conventional medicine would address the issue of "adrenal fatigue" and do studies to either confirm it or deny its existence and put the issue to rest.

Sorry if your testing doesn't even involve saliva testing, and i just went off on a tangent for no reason!!!!

[Sarah4444]

Sorry to be dense, but I'm still terribly curous about what an intergrative doctor is. Are they M.D.s who try to look at things more holistically or are they naturopaths? And to make it even more confusing, you guys seem to have D.O.s down in the States, which we don't have up here in Canada.

Sue1234 - I was also wondering a bit about adrenal fatigue. A woman I have met up here who has POTS and mastocytosis just found out she has Addison's disease, and when I looked that up they talked about mild forms of Addison's being called adrenal insufficiency. Is that the same as adrenal fatigue? Where does traditional medicine stand with regard to these?

[sue1234]

Sarah, from what I understand, Addison's disease and adrenal insufficiency are the same thing, and it is at the point that people have to take cortisol because their life depends on it. It's just that adrenal fatigue is what the "holistic" community talks about. My "holistic" physician was an MD who incorporated conventional medicine when needed, but encouraged non-medicinal approaches, such as vitamins/minerals and supplements. Unfortunately, I have always been so sensitive to meds AND plain old vitamins/minerals that I couldn't follow any of that approach.

[issie]

sue1234,

I think you have valid concerns. I've been down this path too. I always came back with low cortisol and was two different times in a near crash - but western medicine didn't agree with the cortisol findings. I did however, try the cortisol - it made me sleep all the time and I gained allot of weight. I don't really think it helped that much. I think possibly supporting the adrenals with alternative meds - instead of cortisol may be a better option. You can do B-Complex a couple times a day and there are other things too. Patonthetic acid - 100mg. every 4 hours in addition to the complex is what is prescribed by a very, very old book I have on how to fix vitamin and mineral deficiencies - related to the adrenals. There are other options for support. Also, some people use adrenal gladulars.

[Sallysblooms]

Sorry to be dense, but I'm still terribly curous about what an intergrative doctor is. Are they M.D.s who try to look at things more holistically or are they naturopaths? And to make it even more confusing, you guys seem to have D.O.s down in the States, which we don't have up here in Canada.

We have some very good alternative MD's here in the US. You can look them up and see if you have some. In Arizona, they train alternative, integrative MD's. I believe Dr. Andrew Weil started it all. Someday, hopefully all doctors will be more knowledgable about all kinds of care, supplements etc. The demand is high for sure!