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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 12 of 12. This is the beginning of the thread.
Posted by Vincent_QC on December 8, 2011, at 18:43:32
Didn't come here since a while ... wanted to take a break... but my anxiety became unbearable since last january to the point of no return and need some advices...
Don't know exactly what happen with me but in 1 1/2 years my anxiety just got worse to the point that I can't even stay alone at home.
I was hospitalized in a mental health hospital with no success last september and half of october.
I also stop seeing my PDoc cause he was doing nothing for me, i'm on a wating list to have another one who will take care of my problems more carefully.
I just return home from the hospital after 1 month, for the last year I had many GI and intestinal problems, lost 60 pounds, goes into a malnutrition state with severe constipation... had a CT-Scan with dye contrast product for the abdominal and pelvis part last april and the Doc didnt't see anything wrong with my intestine, and I finally had an intestinal obstruction, the first one october 17th and another one the 25th october, also my bile duck was twisted with 6 liters of liquid inside. I had 2 surgeries in 1 week and i'm now feedind with enteral liquid with a jejunostomy tube who enter directly into my small intestine (Peptamen 1.5 liquid) BUT I can't eat normaly and have to follow a strict diet, mainly mashed diet with no crude vegetables... Will have the jejunostomy tube until february or march 2012 because I need to gain weight, i'm in an anorexia state...my protein level was so low that I had 1 treatment each day for 1 month of Albumin IV... Even with the albumin, the high protein enteral feeding I can't gain weight, I continue to loose some weight. All my muscles hurt and can't walk or climb stairs...
For the anxiety, my symptoms are now debilitating. They are mainly related to my heart, the constant headache (vascular headache), depersonilasation feeling all the time, dizziness, low blood pressure, food intolerance (water make my blood pressure lower, increase my headache pain and adding salt do the same thing, milk make me bloating, bread, rice or pasta give nausea and worse the constipation, same for fruits and vegetables...), hands turning blueish all the time, hypotension orthosstatic...
I can't go out of the house, if so it's only for important things like Doc appointments...and if it's by car, my heart can race up to 180 and more even on the small roads, can't be a passenger and go on the highway because each time I faint because of the rapid heart rate. Also, my everage resting heart rate is now between 100-140... if I move, take a shower or have a bowel movement or just lie down in my bed to sleep, especially at night, my heart rate increase to 140 and more. I can't get up at night and have to wait in the morning to get up to go to the bathroom because of the fast heart rate. The morning and in the evening and night it's the worse time for my heart rate... in the afternoon it's ok, sometimes around 95-100... but I can't be used to that fast heart rate... in 2010 I had a SLOW heart rate of 50-60 all the time even when I was anxious... that's really weird...
I'm also very med sensitive, can't even tolerate a small 1 mg of Paxil, this year I only try 2 meds and a bunch of natural products (B5 Vit, Tryptophan, Inositol, magnesium cure, lycorice, siberian ginseng high in eleutherococcus senticosus but I even at very low dose I had major panic attack from it, even from the inositol...). The first med was the Abilify at a very low dose of 2 mg and I almost die and had to go to the emergency because of the fast heart rate and I try to be back on the Paxil but never be able to reach the 2 mg dose because of the fast heart rate also (had the liquid Paxil finally, I buy it on a online pharmacy store and they don't keep it at the custom)...
My addiction to the benzo meds is very scary also, I can't decrease them even if they try to put me into a withdrawl process at the psychiatrict hospital in september... i'm on Klonopin (8mg day) + Xanax (1mg day) and sometimes Dalmane 30 mg to sleep OR Valium 10 mg to sleep. I also take 10-15 mg of Inderal to slow down my heart rate in the morning and evening but it's not working anymore, if I increase the dosage my blood pressure drop below 90 and my heart rate increase, of course I try several other Beta-Blocker with the same result (Atenolol, Acebutolol, Lopressor, Bisoprolol). Of course I try again the Clonidine with no result on the heart rate, only had lower blood pressure who lead to fainting episode...
I went to the emergency room five times this year for the fast heart rate and each time I had EKG who was normal but only with sinus tachycardia and one time I had a heart rate of 240 and they told me it was regular and only supraventricular tachycardia. Had 2 holter monitor 24 hours who only show the tachycardia with no PVC or anything else. Had a stress-test for the heart and nothing also, nothing to explain the tachycardia or the exercise intolerance.
Anyway my life for now is completly centered around my heart, my blood pressure and the heart rate, the chest pain and thing like that. I lost all my friends, don't drive my car since October 2010, didin't go out of the house for doing normal things like eating at the restaurant or doing some shopping or see a friend, I only go out of the house around 10 times in 1 year and it was for Medical purpose...
Now with the 2 susrgeries I had in October I feel even worse. I fear to have another intestinal obstruction, if I eat some food I have nausea, i'm always scary when it's time to do a bowel movement and fear to die of a heart attack cause I need to strain a lot, I use glycerin suppository, it's the only thing who help me to have a bowel movement but I need to strain even with 3-4 suppository. I try other laxative but they all make me sick especially milk of magnesia and Lactulose.
I'm terrify and don'T know what to do. I can't even stay alone at home now because each time it's like i'm dying. I try to stay down to earth and told me that it's only anxiety but I can't control my brain. Even when i'm not alone at home I feel bad. It's not normal agoraphobia and not normal panic disorder since I don'T have real panic attack now, it's happening rarely, i'm having more severe free floating anxiety all day long and I have no safety zone. I now fear to go to sleep and wake up all night in a panic state, that's horrible.
I had many other tests this year, my adrenal glands are normal, no crushing syndrome, normal dopamine, noradrenaline and adrenaline level, no tumor on the adrenal glands, supression test was normal...only low cortisol was found in the 24 urinary test but the blood test 6-8-12-4-12 hours show normal cortisol level...also, no thyroid problem, nothing to explain my symptoms.
I also have no Psychologist for now, the last one I had call my PDoc and told him that he needed to make me see a special Psychologist for peoples with big anxiety problems like mine, they call this the second line therapy... anyway the PDoc didn't do anything and leave me without any kind of help, no psychologist since april, no thereapy, nothing, just refill my RX for the benzo meds... He was always saying that I was too skinny and things like that but never RX some tests to see why I was loosing so much weight! I was so frustrated... That's why I stop seeing him last september. At the psychiatric hospital they didn't help me either, the PDoc I had there his a friend of the PDoc I had and he was saying things like try to find NATURAL solutions to your problem, solutions who don't include meds, he wanted that I do a list of task to do each day (relaxation, breathing technic, yoga...) and he refuse to start the Paxil again. He said that i'm in the Cluster B, Axe 2 with a personnality problem?!? All the peoples at the psychiatric hospital was put on seroquel or abilify... and when a PDoc wasnt able to treat someone, he was saying to him that he had a personnality problem... that's so frustrating... I saw peoples there on high dose of Seroquel or Abilify, peoples who had only simple panic disorder problem or depression, peoples which should not be on these drugs. I leave the psychiatric hospital not by choice but because the first intestinal obstruction occur there, so I was sent by ambulance to the hospital where I had my gastric by-pass, had 1 CT-Scan again and was sent to the surgery room in less than 2 hours...
Anyway i'm scare all the time now... I know I don't die because of the fast heart rate, but I have no life... I can't live in the moment and always think about the next night I will be in my bed or the next time I will be alone at home...
For the meds, I want to start again the Paxil but just the idea of taking it make my heart race too fast... What to do?
Some help will be appreciate here... any idea about new meds or things like that?
Thanks!
Posted by Phillipa on December 8, 2011, at 22:57:36
In reply to 1 year later and feel very bad..., posted by Vincent_QC on December 8, 2011, at 18:43:32
Vincent wondered where you went. And seriously was thinking of you today as a radio talk show person is having gastric bypass. Still feel the meds are not being absorbed? So you are on solid or mushy food not no tubes right? I always thought the maximum limit for heart rate was 220 beats a minute? I'm sorry you are having same problems but worse. Why not facebook again? Almost googled you there. I have found I need less meds. And I just had the same tests as you with 24 hour urine cortisol and it was low normal, the the 24 hour dexamethasone challenge test with fasting blood draw normal also. Thyroid just raised too. Do you feel it could be OCD with the ruminating thoughts? Just recently saw a new pdoc and that was his diagnosis. Still have my mail? Missed you. I will try to google for you. Phillipa
Posted by Phillipa on December 8, 2011, at 23:34:50
In reply to 1 year later and feel very bad..., posted by Vincent_QC on December 8, 2011, at 18:43:32
I did google and believe it or not is common in younger people heart can race to over 600 beats a minute. Wolfe Parke syndrome is only disease found realated to it. Phillipa
Posted by Vincent_QC on December 9, 2011, at 8:48:16
In reply to Re: 1 year later and feel very bad... » Vincent_QC, posted by Phillipa on December 8, 2011, at 22:57:36
Like I wrote Phillipa, I had to take a break, I think we argue about my very good (kidding here) Cardiologist and his explanation about the gastric by-pass related to my heart problems? Anyway, I wanted to see another Cardiologist to have more heart test done, especially the tilt table to see if i'm not having a postural tachycardia syndrome BUT no hospital in Quebec city have a tilt table!!! Will have to go out of the town in a bigger city to have one and the waiting list for that test is more than 1 1/2 year!!! I can't travel for now, even a 5 minutes ride in a car make me sick and terribly anxious.
For the meds, my GP think I absorb them too much and that i'm a too good metabolizer, mean that when I take them, it's like I take 2-3 times the normal dose, who explain the too much side-effects, but again, no test to see if it's the real problem about my med sensitivity...
The intestinal was linked to my gastric by-pass and the hernia repair I had, since they are both abdominal surgery, a lot of adhesion (scar tissue) was present inside my belly and those adhesions were glued to the intestines and the intestinal wall, who slow down the intestinal movement needed to have normal bowel movement... The first surgery I had was to repair the bile tube, empty it of the 6 liter of liquid and fix it correctly. They do another CT-Scan 1 week later because I continue to have pain, nausea and they saw the small intestine obstruction, so they sent me again in the surgery room and they remove all the intestine from the intestinal wall, clean them, fix the small intestine who was also twisted, they look if I had some leak and they remove all the adhesions (scar tissue) I had, apparently I had a lot of those adhesions everywhere in my intestinal wall...
At first I was feeding only with IV food, it was pockets of yellow liquid with protein and vitamins... the maximum time allowed to stay on the IV feeding is 2 week cause of the possible infection problem that can occur because this liquid goes directly in the big arteria near the heart, they instal a PICC line (peripherally inserted central catheter) especially for this purpose and after 2 weeks they start the enteral feeding in the jejunostomy tube who is connected directly into the small intestine. That tube also prevent future small intestine obstruction because he prevent the intestine to twist again... that tube is painful, even after 1 1/2 month and I can't sleep on my belly or laught without being in pain... Also the lack of protein and the malnutrition state have resulted in a big and long wound of 30 cm who became infected, and I had 3 big holes in the wound, 2 of them needed a special machine call V.A.C, a machine who apply negative pressure and make the hole heal faster... I had the VAC machine for 5 weeks, they remove it at home but I still have infection in my wound and 1 big hole who will take a lot of time to heal, that's not very beautifull and it's also painfull...
For the Cardiologist, I wanted to see a new one when I was at the hospital but they say no!!! I hate the public health system for that... Anyway, he his all the time out of the town OR at the university to teach, he never return my phone calls and i'm wating right now to have an appointment for an echocardiogram, to see if my heart is not enlarged or dammaged because of the malnutrition state. All the EKG are normal, they only show tachycardia with sometimes normal sinusale rhytm and sometimes respiratory sinus arrhythmia who is a naturally occurring variation in heart rate that occurs during a breathing cycle... so I Was told by other Docs that it was ok, even if my heart beat was at 240, it was regular and only supraventricular tachycardia OR simple tachycardia... When my heart had a 240 pulse rate, they give a med by injection but I don't remember it's name, but I remember that I was knocked out for almost 8 hours in a row at the emergency...
Hummmm, the funny thing is that here in the Quebec state, we don't have access to our medical folder... BUT when I was at the hospital I had a lot of tests done for my intestine and each time they give to you your entire medical folder in a close blue bag... one time I wait 20 minutes after the person who was suppose to bring me to another departement for a test and I had the time to read my medical folder, and I had access to my PDoc DX... Apparently i'm in the Cluster B axe 2 class... the funny thing is that it's not true at all... i'm not an antisocial person, I have social phobia, that'S not the same thing... i'm more a Cluster C person, mean a lot of anxiety and OCD... google that you will see by yourself... he also wrote that my mom is a control freak, that i'm dependent of my mom, that I have a bad relationship with her, that it's like i'm a kid even at 35 yo.. things like that... I was so angry about the PDoc and what he write... Anyway, I was told by my last Psychologist that I had somatoform disorder, mean that I had a lot of physical symptoms who can't be explain by the regular medecine... and some of those symptoms are also from too much ruminating and the fact that I lost all my personnality and that now my enterire personnality is all about my physical symptoms and my anxiety and that I lost my personnality... things like that... who is true by the way...
Well enough computer for today, had insomnia again last night, sleep barely 3 hours in a row, had to take a Remeron pill (only 3,5 mg) but god I hate taking this med cause I feel a lot more dizzy in the morning and my heart race faster also... The Dalmane who is a hypnotic benzo stop working after 3 weeks on it, so I avoid it now and I also try to not take too often the Valium cause i'm already on the Klonopin and occasionnal Xanax 1 mg day... sometimes I skip the Xanax, i'm not suppose to take it now, I stop it 2 months ago but need it now and was lucky to have 2 big jars (not the good word here) of real Xanax, not generic that I refill at the pharmacy before I stop it... just in case... who show my addiction personnality... anyway...
Feel free to e-mail me, vslippermen@hot...... don't take my e-mails often, every 2-3 days...
Bye
Vincent ;-)
Posted by Phillipa on December 9, 2011, at 19:07:05
In reply to Re: 1 year later and feel very bad..., posted by Vincent_QC on December 9, 2011, at 8:48:16
Vincent wow you sure have been through a lot. I'm so sorry about all the medical problems. I once had a PICC line also for antibiotics when in hospital for lymes disease drove me nuts so they removed it and gave me the meds by mouth. Yes I do know of adhesions. Can be very painful. I'm thinking that is intestine shorter that you absorb the meds very quickly. And then they don't last as long. Yes that 240 heartrate must have been so scarey. Don't know the med they would have used to slow it down since don't have heart disease. Sorry the pdocs diagnosis also upset you. I did read about tilt tables. I think it was related to Pots disease? How is your Mom? I will take your address if not still in folder and write you. On computer late today gone out all day. Love Phillipa
Posted by Vincent_QC on December 9, 2011, at 21:06:56
In reply to Re: 1 year later and feel very bad... » Vincent_QC, posted by Phillipa on December 9, 2011, at 19:07:05
You know what, I think that I have IBS symptoms with constipation who is related to the anxiety and that the intestinal occlusions occur just like that, with no luck. I still have a lot of pain, nausea and severe constipation and developp a fear of having a bowel movement because of the fast heart ratewhen I strain or the irregular heart beat who happen all the time also when I have a bowel movement... anyway, we will never know what happen really, that's hard to separate the physical symptoms of the anxiety and the physical symptoms who are real and not linked to the anxiety itself...
For the PICC line, I was kinda drugged when they instal it in the upper part of my left arm, I was on Demerol 50mg injection every 4 hours to control the pain from the 2 surgery, since the Demerol is the only one opioid that I can tolerate... In fact I was only taking it to be able to sleep cause at 50 mg it was not really effective for the pain relief... After 12 days on the Demerol, the Doc said it was enough for me and that the Demerol is dangerous because of a metabolite who can give seizure and things like that after 3-4 days... so he change the Demerol for the Dilaudid injection and I only take 1 injection of Dilaudid and I do a major panic attack, the nurse took my bloood pressure and it was very low but the heart rate was around 160... even after 2 hours, so I never take pain medication again after those 12 days... just some tylenol + indomethacin suppositery every 12 hours for the inflamation and pain... the indomethacin was very nice because it was the only med who was able to stop my headache, but it's an old NSAID med and it's dangeroug for the heart, so again they stop the indomethacin after 14 days and put me on a low dose of Naproxen (250 mg) every 12 hours, who was doing nothing for the pain or the headache... I still have terrible rebound headache from the indomethacin... when I leave the hospital after 1 month I ask to have a RX of indomethacin for my headache but the Doc say no and just allow the Naproxen, saying it was safer for the heart... and he said to take it always with the Prevacid who is a proton-pump inhibitor and protect the stomach from bleeding... anyway...
I don't know if the fact that my intestine are short if it's have an effect on the absorbtion of the meds I take, but I think some of them are not well absorb and other are very well absorb, maybe too much (Benzo meds for example)...
The supraventricular tachycardia episodes I had was very scary, they start very fast and whatever you do to slow down the heart beat don't work... My GP teach me some valsalva manoeuvre or vagal manoeuvre to stop the supraventricular tachycardia but nothing work to stop them with the exception of the IV med that I don't remember the name... and just the regular sinusal tachycardia is scary for me, I can't sleep at night because of this or do things like taking a shower or just climb stairs, who is really annoying.. I really don't know what happen with my heart and all those tests I had, especially for the urinary cortisol, noradrenaline, adrenaline and domapine level mean nothing, if my heart rate so fast I need to have a lot of adrenaline in my head or my blood? I had a very low adrenaline level at this test, who seem to be not normal for me...same for the noradrenaline...the dopamine was a little bit high... cortisol low... but blood test proove that the cortisol level are normal, even at midnight... so I really don't get it...
The tilt table test is for POST, you are right... I have a lot of symptoms related to that disease, I have all of them in fact... and strangely POST is related to a low noradrenaline level... weird no? BUT I have tachycardia even in my bed since 3 weeks, so i'm not sure if it's POST or not now OR just a new fear of going to the bed for the whole night because of the enteral feeding machine, the pain and the bloating feeling I have when the liquid enter directly into my small intestine?
Well... I think I develop a lot of simple phobia over this year... never had fear of waking up at night to go to the bathroom or fear to go to sleep... that's crazy no? The constipation make me a lot anxious also, if I don't have 1 bowel movement each day, when I go to the bed at night, I start being very anxious because I fear to wake up in the middle of the night and have a urge needed to have a bowel movement and with the fast heart beat i'm scare to pass out...
Well, it's time to go to the bedroom now... I hate this now... I need to sleep but already have a fast heart rate ad know it will take forever before I fall asleep... will avoid the Remeron for tonight, I still prefer to sleep 4 hours than feel sedated all day long and dizzy and spacy like today...will maybe take the Xanax, will see if I fall asleep fast or not... of after 2 hours I don't sleep I will take it...
We talk later,
Vincent
Posted by Phillipa on December 9, 2011, at 21:44:15
In reply to Re: 1 year later and feel very bad... » Phillipa, posted by Vincent_QC on December 9, 2011, at 21:06:56
Vincent since you are probably already in bed I do still have your address. To relieve your mind when you have a bowel movement it is the valsava manuver so it should slow down your heartrate not increase it. You still have my address? If not babblemail me and will give to you again. Phillipa and try and sleep well.
Posted by Vincent_QC on December 10, 2011, at 7:53:57
In reply to Re: 1 year later and feel very bad... » Vincent_QC, posted by Phillipa on December 9, 2011, at 21:44:15
Hi Phillipa,
I know it's a vagal manoeuvre but when I have a bowel movement my heart beat is irregular with a lot of skipping beat, long pause of 3 seconds, fast heart beat...I hate that.I didn't sleep well, even the Xanax don't do anything on me now and since i'm not suppose to take it, I think I will stop using it as a sleep aid and return on the Valium only. I need something like the SONATA to fall asleep faster, but the Sonata is not sold in the Canada, it's a very short acting (1 hour) non benzo meds who help to fall asleep faster. I try the Zopiclone pills of my dad last week and even at 15 mg I didn't fall asleep faster or sleep more... so I guess my addiction to the benzo meds are = for the hypnotic benzo and anxiolitic benzo meds or the ZZZZZ drugs... It take forever before I fall asleep 2-3 hours and when I fall asleep I start dreaming and wake up 1-2 hours later all cover by sweat with a fast pulse rate and it take forever before i'm able to sleep again.
The main problem is that since I return home after the 1 month at the hospital, I don't feel good in any position I take to sleep in my bed. I also have burning feet and a lot pain in my lower legs so I always need to move them. I probably have a low potassium level since I can't take my vitamins... will try to find some food I can eat high in potassium... I can't sleep on my belly like I always do because of the jejunostomy tube, the machine who deliver the enteral feeding liquid always start beeping for nothing, the tube sometimes become twisted when I move in my bed and the machine start going crazy,each time the machine bep, I have to waking up and stop the machine, look at the tube, replace it and start the machine again... sometimes the tube leak and I have to waking up and change all the sheets. So I think that's why i'm overstress when it's time to go in bed at night.
At the hospital it was not like this and my pulse rate was lower also, only high when I was standing. I think it's because at the hospital I felt safe because of all the nurses and Doc who was there 24 hours a day... Also if you count the 3 1/2 weeks I stay at the psychiatric hospital before the intestinal obstructions occur, that's mean around 2 months out of the house, I never return home for all this period of time and when I return home I had and still have to take care of everything by myself (my mom help me but she can't do a lot of things right now), clean myself (can't take my shower or a bath because of the dressing on my scar on the belly and the dressing for the jejunostomy tube... I have to take care of my meds, the time I take them, have to make my food since a mashed diet is not very easy (I eat almost only chicken that I cook and use a chopper to reduce it in a mashed state, I also have to cook some vegetable), make sure I have baby food especially mash fruits, have to be carefull with the long list of food that I cannot eat, no spices, revome all the skin from the vegetables before I cook them, no fiber (mean only corn flakes cereal kinf of OR white bread), no rice, no pasta, no soda, no tea or things like that... Also have one nurse who come home everyday to change my dressings on my scar and the jejunostomy... and I never know when that person will be at home, so I have to be ready before 9 AM, normally the nurse come home around 9 or 10... but sotimes it's in the afternoon.... that's mean I need to be ready before she's home... get up, eat, have a bowel movement (with glycerin suppository), clean myself (shower for the legs and feet and hand wash for the rest of my body, get dress... that's a lot of pressure and stress and I understand why i'm so tired and the not very good sleep don'T help as well...
I forget to talk about my mom, she's not doing very well since last march. She have a herniated disc and can't walk or stand for a long time. She also have osteoporosis in an advanced state who don't help and the Pharmacy do a mistake with her Thyroid meds, they give to her 0.2 mg pills of synthroid insistead of 2 mg pills, that happen in the summer and her thyroid blood test show a level 10 times higher than the normal range, so mainly her Doc his now very scary and think she may had a stroke because a high thyroid level... he his scare also because a high thyroid level like she had is dangerous for the heart, can enlarge the heart and do a lot of damage to arteries, since she's also diabetic type 1, that's a lot more dangerous. She will have a CT-Scan with contrast of her head to see if she had a stroke or not and also she will have a heart test (echocardiogram) in case of a heart problem. She told me often that when she walk she feel like one side of her body is paralysed... We will hope that she didn't had a stroke because of the high thyroid level. The Pharmacist appologized many times to her and the Doc but the dammage are done now. She took the 0.2 mg pills for 3 months before having a regular blood test for her thyroid and discover it was very high!!! She still in the higher range for the thyroid, it will take another month or two to return to the normal range.
I have your e-mail address for sure...
Will keep you update, for now i'm awake since 6 AM and feel like I don't sleep since 2 months and that headache will make me crazy, I was thinking that I had low blood pressure again because of the dizziness when I stand and the pain I feel in the veins above my 2 ears but I take my blood pressure and it's normal 120/70... so I don't understand cause normally I have this kind of pain in my veins when I have low blood pressure... I really don't understand what happen...
We talk later,
Vincent
Posted by Phillipa on December 10, 2011, at 20:58:45
In reply to Re: 1 year later and feel very bad... » Phillipa, posted by Vincent_QC on December 10, 2011, at 7:53:57
Vincent lots of stress in your life. As for your Mom and thyroid levels high won't cause a stroke as mine has been high many times. I've heard of thyroid levels in the hundreds and the people are okay. Cause of the diabetes though which can cause all sorts of complications with all body organs could have been for that. I'm sorry about the disc I also have osteoporosis and discs healed on own and cervical fused on their own but still have full flexion. If you have my address why not directly write me? Will be looking for an email from you. Love Phillipa
Posted by bleauberry on December 11, 2011, at 16:03:40
In reply to 1 year later and feel very bad..., posted by Vincent_QC on December 8, 2011, at 18:43:32
That is such a heartbreaking story and I am so sorry.
It looks exactly like Lyme disease to me. Almost picture perfect. I'm not saying you have Lyme disease. I am saying that the "bizarreness" of what is going on...and obviously doctors don't know what's going on....fits the profile, pretty much every detail you said.
Thousands of stories out there of people who spent 10 or 20 years suffering horribly and doing every med in the book and doctors seemed impotent and then the patients took a totally different approach and got better.
What makes it hard is lyme looks like so may other things. Sometimes according to my lyme doc it presents itself as just depression or anxiety without really any of the other symptoms. In your case, you got a bunch of the other symptoms, actually they are all on the list every one of them.
Ok so it looks to me like lyme but let's assume it isn't. Doesn't matter. The very same things that are helpful in lyme are likely to be helpful to you because the presentation is the same. That means a strategy that includes anti-inflammatory herbs, anti-toxin herbs, pro-adrenal herbs, heavy focus on food choice (if you haven't tested yet for gluten, if you are that sensitive to other stuff then you could likely be gluten intolerant, it goes with the territory).
For sure I think you were on the right track with some of the things you tried, most especially the siberian gingeng. My experience with it is that while it is usually touted as such a great herb with easy tolerance, and probably for most people it is, it can also be extremely problematic for some people....like you or me or the thousands of others out there with some bizarre thing going on. I couldn't even take a few drops of it without feeling anxiety and depression worsen.
In the adrenal category I would look at 3 choices....rhodiola rosea, ashwaganda, and shizandra. Rodiola is on the stimulating side while the other two are on the calming side, but they all work to balance out over time whatever is wrong. Forget the adrenal thing for a minute, all of these herbs also do multiple varieties of mechanisms all of which are meaningful in presentations that look similar to lyme. There are few miracle herbs in my opinion, but rhodiola is one. The other two I see more as helpful utilities, but rhodiola has the magic.
For sensitive people, here is the key. Super low starting doses are a must. For example my Lyme doc had patients start lexapro at 1 drop....that is 1/10th of 1 milligram. Doses are only increased as needed and as tolerated....no preset schedule.
In my case I found rhodiola by far the most beneficial in a wide range of ways, however this was after 4 previous failures on it.....in all of those cases I was shooting for a dose someone else said I had to get to and I was doing it on a set schedule. This time I started super low....to where I could just barely feel anything (and it happened to not be bad for a change!) and then if I had any trouble increasing a dose I would just go back down a little bit and just keep on keepin on. So doing that I went from 25mg which I could feel to now 250mg which is fairly invisible. Just the good stuff it is doing.
Anyway. So I mentioned anti inflammation and anti toxin. I do have specific herbs in mind which are also well researched in science and books. In addition to that, anti-microbial. That involves something wide spectrum that is also one of the many used in lyme. All of these things put together don't sound like they would be anti-anxiety or antidepression....but that's exactly what can happen because they combat whatever crap is going on that is flooding your neurotransmitter sites with the wrong stuff.
A test for lyme will likely be negative....trust me, long story. Unless you've got about $1000 to get the best specialized test, but even it has errors. And actually whether you do or not doesn't matter...you should be treated as if you do (in respect of super sensitivities etc) and focus needs to be on stuff that causes symptoms like your not just the symptoms themselves. Get rid of the cause and the symptoms go bye bye on their own.
My favorites I think almost all difficult psych patients would benefit from....
1. Resveratrol (only the Source Natural brand 40mg) which is made from japanese knotweed not grapes. Actually it's the knotweed we want here but the resveratrol is a miracle substance in its own right.
2. Rhodiola rosea.
3. Rotation of antimicrobials such as grapefruit seed extract, garlic, berberine.These are all specific for "bizarreness" like yours or like lyme and do all the stuff I said needs to be done.
I would strongly suggest the book Healing Lyme by Stephen Buhner.
Though I didn't mention it here, the presentation also has the same bizarre fingerprint as mercury/lead/arsenic/aluminum accumulation. Most likely suspect in that case would be ongoing or previous amalgam fillings. Even if not exposed to excessive amounts of toxins, some people just don't have the genes to clean up very well and they tend to store the metals until it has a negative effect on their biology, which pretty much shows as a bunch of bizarre stuff that looks....as does lyme....like just about any other disease you can imagine. Treating it requires an OTC med call DMSA, as well as the anti-lyme stuff just because they do so much good stuff.
I am not a doctor.
Posted by Phidippus on December 11, 2011, at 18:42:42
In reply to 1 year later and feel very bad..., posted by Vincent_QC on December 8, 2011, at 18:43:32
You're on overload and the anxiety is why. Its got you completely cornered. Is there any way out? You're terrified of being alone, being in bed, taking medication, your body...
Anxiety occurs when there is a lack of seratonin in certain parts of the brain. The only direct way of treating it with medication is with an AD that increases seratonin in those parts of the brain.
I bet you're only sensitive to meds because you get anxious when you take them-mistaking your symptoms for effects of the drug. I hate to break it to you, but 1 mg of Paxil isn't going to do anything to you. Nothing, nada, zip. It takes many weeks for that type of drug to have an effect in your body.
About those benzos you're taking: they're probably making you worse. The more you take the more tolerant your body becomes and the more anxious you become, which leads to more benzo popping. Benzos really weren't designed to address the issue of anxiety for the long term. They're like a stop gap. Alas, you're pretty stuck with them-Klonopin 8 mg a day???
Start the Paxil again and deal with the anxiety of taking it. I know it feels like you're going to die from your heart pushing right out of your chest, but you really have to do something about your anxiety. Remember, the medicine takes 4-6 weeks to do anything to your brain.
In the meantime, a medicine called Prazosin may help you with your anxiety and panic.
Eric
Posted by Vincent_QC on December 15, 2011, at 17:42:22
In reply to Re: 1 year later and feel very bad... » Vincent_QC, posted by Phidippus on December 11, 2011, at 18:42:42
Hi Eric,
I agree with the fact that the Benzo meds are not designed for long-term treatment for anxiety... in fact if I can turn back time (it's not a very bad song from CHER??? lol), I will never start them in 2005. The Klonopin was really effective for the first year I was on it, for the first time of my life I was normal, no social anxiety, no panic, very outgoing and very sociable with everyone... I think I was using it like a drug and not a med,mixing it often with alcohol (I stop drinking since 4 years now) who lead to fast addiction since I liked the buzzz I had from it... BUT had to increase the dose from 2 to 8 mg very fast because of this addiction.In 2007 I withdrawl it with Valium (using the Professor Ashton method), a long process who took 4 months, I taper it very fast but was panic free at the time, so it was the best time to do the move... I succeed to stop the benzo for 1 month but return on a low dose of Valium 20 mg day after I had some panic attacks out of the blue... and was ok for 2 years on a dose between 10 mg to 30 mg of Valium + a SSRI ( between 2007 and 2009 I was on the Lexapro 40 mg day for almost 6 months, I was also on the Zoloft 200 mg day for 4 months, I was on the Effexor-Xr, I try some older MAOI's and TCA's as well but react badly from them mainly had cardiovascular side-effects) and finally panic attacks start again on a regular basis in 2009 and was put on the Paxil, my first AD back in 1994...and had increase anxiety at first so the PDoc put me again on the Klonopin 4 mg day with the Paxil and stop the Valium... after 2 months of REAL side-effects the Paxil start working and I was free of panic, anxious only in social situations, the side-effects I had from the Paxil back in 2009 are different from those I have now if I take it, in 2009 I had major weight gain even with 5 days of gym/week and a proper diet, sweating all the time, dizziness, asthenia, insomnia...but no panic or heart related side-effect.
I stop the Paxil because of the major weight gain and the fact that I was thinking that since I was free of panic I will be ok and able to deal with my social anxiety or futur panic...I know it was stupid since it was working very well for my anxiety, but I choose to stay on the Klonopin only...in 2010 things turn out to be worse than ever and the PDoc increase the dose to 6 mg day of Klonopin and to 8 mg/day 4 months later... the anxiety just never stop being stronger and stronger to the point that I had to stop completly to live a normal life, stop driving, stop going out of the house and many other things like that and of course the weird anxiety symptoms and weird phobias start...
I try to be back on the Paxil several time, and god I know that 1 mg of Paxil is not suppose to have side-effects and I know also that it can take more than 6 weeks before the calming effect start on a SSRI but I never was able to take more than 1 mg and had major increase of my anxiety each time I took a small 1 mg dose... same for a 2,5 mg dose of Lexapro...
I have a new bottle of liquid Paxil and my GP ask me to start it again after Christmas and go very slow... He also think the side-effects are in fact only my anxiety and I also think the same, BUT I can't control it for now and I know also that I will have no choice to live with the increase anxiety when I will start the Paxil again... I plan to start it as soon as I Can after the Holidays period. I hope that after 1 month or so, even at a low dose, I will feel feel reassured about the Paxil and will be able to increase faster my dosage, I only need 20 mg of Paxil to be free of panic, well in the past it was my dosage to be free of panic and anxiety... maybe I will need more since my anxiety right now is out of control...
For the Benzo meds, I start already to do a better management of my daily dose. I know that 8 mg of Klonopin + 10 mg of Valium before bedtime is a lot... for now, I left more space between each dose. For the whole last year, I was taking 0.5 mg each hour of Klonopin + 1,5 mg of Xanax divided in 3 doses... I now use only the Xanax in emergency occasion, when I have to go out of the house by car or be alone at home for a whole day and only use half of a 0.25 pill... Now I take 1 mg of Klonopin every 2 - 2:30 hours... next step will be 2 mg every 4-5 hours... the goal will be to take it only 3-4 times a day... after I will reach the 3 doses a day, I will taper it with the Valium again... cutting the Klonopin dose before bedtime and only take the 10 mg of Valium... and cut in half my morning dose of Klonopin and add a dose of Valium, do the same with the afternoon dose and the evening dose and ending on 40 mg of Valium after several months... I know I can do it... but it will be a long process...
For the Prazosin, I can't take it. I already have a low blood pressure with orthostatic hypotension and my usual blood pressure reading is around 100-110/60-70 and have only a small increase to 120/80-90 when i'm in a panic mood or in a situation like be in a car (yeah it's a phobia now)... I faint 3 times in 2011 from the low blood pressure. That's why my heart beat fast, it's trying to maintain my blood pressure higher to prevent the fainting...BUT I also faint 3 times in 2010 when I had a high blood pressure... really weird...anxiety I guess again...
I also already take a small dose of Inderal for the fast heart rate...it's not working anymore and can't take more than 5 mg total a day... more than this make my blood pressure drop to a low 70-80/40-50... who is not good for me and make my heart beat faster.
Also, the malnutrition state affect my heart, I will have an echocardiogram in january to see if my heart is ok or not. Since I lost 60 pounds in 6 months in 2011 and that I lost almost almost all my muscles mass and the heart is a big muscle, I think that's the main reason why my blood pressure drop to the low side... In 2010 I had a normal high blood pressure and my normal blood pressure was around 135/90... and this summer in less than 1 week I start having the low blood pressure with reading around 80/50...
Anyway thanks for your help ;-) Will beat that anxiety for sure, can't live like this for another year...
Vincent ;-)
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