what is going on...strange fear and anxiety

I have not been able to sleep a full night lately due to a strange kind of fear.

 My thoughts have become my worst enemy and I can't seem to shake it off.  Is this a normal process that everyone must go through? the loneliness you feel because no one seems to understand you are sick.  My friends invite me places but my legs feel so weak that I find myself concerned on how much walking I may have to do. 

My balance is off again and I feel like my body is swaying. So how does one function when you can't do much and can't sleep?

 Thanks for reading my blog.

             BonnieCry

Comments

Bonnie, I spent a lot of

Bonnie, I spent a lot of time on the computer when I could not sleep in the middle of the night.  It was better than thinking anxious thoughts and worries.  After an hour or two I would find myself beginning to fall asleep at the keyboard and go back to bed.  Not what I would have wanted but better than thinking umproductive fearbased thoughts and despairing actively.    When I started abxi treatment I started Klonopin0.5mg at bedtime and this helped.  At 20 months I discontinued it without any problems.  I now am successful with returning to sleep with the support of a combination sleep supplement formula and extra melatonin">i,  see my recent blog for the specifics if you are interested in reading what that is.  I have been on LDNi for about 5 weeks now without any untoward effect that I can notice for myself.   Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Bonnie,  included here are

Bonnie,  included here are some links related to Low Dose Naltrexone.  In particular the October 2009 LDNi Conference in Calif. is included.   Some of the presenters talks are there in entirety.  Takes several hours to listen to them all but I found it worthwhile.  Also some links to the Low Dose Naltrexone .org web site.   Louise

http://www.cpnhelp.org/lowdosenaltrexone_ldn_web<

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Paula, what time of the day

Paula, what time of the day are you taking the LDNi, how much and are you taking it in a split dosing or all at one time?   I have started working with some of the adjustments that I am asking you about just two days ago and started 5 weeks ago as well.   Louise

 

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Thank you all for your kind

Thank you all for your kind words of hope during this tough time of treatment. You share so much from your Challenges and tough experiences, that at least I know I'm not going crazy.

I have started to up all my moppers  with  taking take two packs of cholestymine during the day. This does seem to be helping a bit with the anxiety and sleep.

Thank you all so much for your support....Smile

Just a question on LDNi, what is it and how does it help?

 Bonnie

 

 

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Bonnie,I have some of the

Bonnie,

I have some of the same symptoms you describe with severe head pressure and vertigo. I have now had a diagnosis of babesia and am being treated for that. Also, I started low dose naltrexone about 5 weeks ago. I love it and have found myself feeling good mentally during the day and sleeping like a baby at night - no more anxiety attacks and freaking out at 3 am. My night sweats seem to have stopped as well. This could be my body responding to the lowered babesia load. I wish I could tell you a good way to get diagnosed for babesia or other tick borne infectionsi. You need to find a good Lyme literate doctor near you, if possible.

Paula

Paula Carnes

I feel for you believe me.

I feel for you believe me. I upped my abxi dosage last week and wake every hour feeling like my lungs aren't getting any air (not hyperventilating!). I literally feel like my heart rate and BP have slowed so much my body is waking me up to jump start everything. Very scary. I have testing my BP lying down and it is 112/54. I think I have dysautonomia/POTS which causes me to panic when I wake up at night and stand up. I am waking in a full on sweat, pale, pain in my left arm, heart symptoms etc...but tests are negative. I am trying to deal with the anxiety but it is very difficult. Anti-porphyriai measures not working yet for me, but I suggest you try them. I am cold, then hot, feel like I have a fever, but have none. Really losing it and am alone here but trying to stay the course. I am supposed to be adding Rifampin right now and am really hesitant. But my LLMD says my Bart is a significant contributor to my anxiety, so who knows? Anyway, be well. Chris
CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.

Bonnie, this may sound

Bonnie, this may sound really stupid but . . . when I first started having trouble walking no one believed me. I was constantly reproached for not joining a dance group or going to a dance party. Now that I'm much more disabled people are much more understanding. I attribute it to the use of a cane. I have experimented and when I don't use the cane people assume that I am sufficiently able to jump out of their way, etc. As soon as I put a cane in my hand the world jumps to help me: doors open, people clear a path, if I drop something people race each other to pick it up. And my friends go out of their way to find things I can do with them (dinner, movies); they drop me off by car. They also wheel me around museums in a wheelchair. So, although you may not need one, try a cane. It's kind of fun to see the reactions.

As far as sleep and depression go: Upon diagnosis, my neurologist recommended Prozac. He said "Many people with MS use it." I said "I can't imagine why!" For sleep I use benadryl and a touch of valium. Melatonin">i doesn't work for me.

And you are not alone -- you have us!! 

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

My heart goes out to you.

My heart goes out to you. It is hard when the people around you don't understand your limitations. I hope things like porphyriai moppers and melatonin">i work for you.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

I experienced what you are

I experienced what you are describing, but just BEFORE I began abxi. My heart was racing and I was afraid every night that I wouldn't wake up, so I tried desperately NOT to sleep. (I'm sure I was just making everything worse, with sleep deprivation.) Melatonin">i didn't help me then, though it does now that I have cpni under control.

First, I've learned from reading here that if you have to ask if you have porphyriai, you probably do.

Second, you might want to read this (timely, for you) post elsewhere on the site. Wink   http://cpnhelp.org/great_sleep_aid#comment-47773<

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Bonnie I came on today

Hi Bonnie I came on today looking for some help on the exact things you are asking about.Twice this week I have gone all light headed and as good as fainted.I am feeling depressed and the anxiety is awful especially at night.I am so listless and feel very isolated until coming on here that is and can see I am not going mad.I have been on Doxyi 1 month and suppliments for nearly two weeks,I have to start two days of falgyl next week and I have to say am scared too for what symptoms may come next. It looks like maybe I have secondary porphyriai but will have to read more on that.Goodluck with your journey lets hope this faze with pass as soon as possable.

sunshinecoast Australia.Fibromyalga suffer recently informed I have CPNi started on Doxyi 50ml twice a day 21.2.09 

Hi Bonnie, I echo what

Hi Bonnie,

I echo what Elinor states above.   Restlessness, anxiety and depression can be due to increased secondary porphyriai.   Many, many of us have experienced this in treatment and have found relief by taking strong counter-measures against secondary porphyria.

Here is a great list of some other potential symptoms of secondary porphyria, btw:

http://www.cpnhelp.org/reactions_and_remedies <

Note the potential remedies for secondary porphyria on the above link as well.   Don't underestimate the negative effects of secondary porphyria.   It packs a whallop!

I hope this helps.   Feel better soon!

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Bonnie, strange fear and

Bonnie, strange fear and anxiety could be porphyriai.  You have to learn to live with feeling rotten in the short term but don't let porphyria get out of hand, if lots of extra glucose doesn't work to reduce it maybe you could try extra charcoal and smaller doses of antibioticsi for a while. See what your doctor says.

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Bonnie, Melatonini is on

Bonnie, Melatonin">i is on the list of recommended supplementsi available from the getting started tab at the top of the webpage.

Melatonin

1.5mg

At night

If needed for sleep

I recently added Melatonin  at the 3mg dosage a H.S. in the past week or so, what it may be doing for me is allowing me to get back to sleep more quickly when my bladder calls me to attention.  I weaned off Klonopin 0.5mg almost 7 weeks ago.  I started it in 6/07 and it worked wonders, my MD wanted me to give a go at being off of it.  I am using a combination sleep aid from fibroandFatigue.com that I was given there in May 2007 which initially did little good for my mid-sleep cycle insomnia.  I abandoned it when I started the one pill a night Klonopin.  I am going to discuss keeping it available for random stretches of increased life tensions that come and go but don't know if he will rx it again for me.   I did not seem to develop any dependency on it regarding that potential.  And a couple of years of consistent sleep was certainly worth it.

Before I ordered this additional melatonin I read about it some again and decided that this time it just might be a good temporary support supplement.   I think for myself it is a bit to soon to tell but so far so good.  I had tried it several years before  I started treatment and it did nothing back then,  certainly I was quite ill with CPni and porhyrin load so......

What I did use back then which seemed to help was over the counter meclizine or Dramamine II.  I picked up on this at an alternative med workshop that I attended.  It is for vertigo and used for meniere's patients in higher dosage concentrations.

My other thought, having been to Walgreen's yesterday to pick up some other things was the Rollerator that I saw for $137 US.  I didn't realize that they could be had for such a low price really.  If I had had one of these early on in treatment I could have been out and about more.  Someplace to sit when needed. and something to hold onto if a bit of dizziness comes upon you.   Just a thought.  I am all for aides that keep us mobil as much as possible. 

Louise

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Dear Bonnie, I have

Dear Bonnie, I have definately experienced what you are going through. I cannot give you any clinical evidence as to why this happens, I can however validate your feelings. I have stayed awake for hours worrying and stressing or had gripping fears that are often unwarranted. I do not understand what happens but I would not be surprised if it some kind of a chemical brain thing. I would try the melatonin">i, it does help.

As for the legs, that is my biggest and getting to be the only physical problem I have. I ALWAYS have to think about how long will I have to stand, is there going to be places to sit, are there hand rails, is there stairs, are people going to walk to fast for me to keep up. I have found that my social life has all but fizzled out except for my family. They are the only ones that have the time and concern to think of my needs and limitations in a social environment. They are the ones that drop me off and pick me up at the door, make sure that I have a place to rest, ensure that I don't feel left out etc. I don't know what I would do without my family. If you are not fortunate enough to have a support system like that, I really and truely feel sorry. I could not find friends that I could keep up with and wanted to do the low energy things that I could do. It is very lonely sometimes. People sometimes don't like to hang with people with a disability or illness. When I became ill, no one called anymore. It is a lonely life, but you have to reach out to the ones that you know will support you.

Sorry that you are going through a low period. Everyone has good days and bad days. I hope that you will find a sunbeam to rest in like a fuzzy kitty, and just bask for a bit. Go easy on yourself. Others cannot understand as we cannot share our experience with them. We do here however. 

Smile, confuse the heck out of your face. 

 

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.

Todybear,  Thank you for

Todybear,

  Thank you for the kind words and helping keep things in some prospective. I am very blessed to have a supportive family, although I wish they would read more about cpni and all it can do to a person.

  I do have a fuzzy kitty who is 9months old and he has a way of keeping my spirits up with all his silly kiiten tricks.

 

 

  Thanks for the smile.... Bonnie

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Addendum,Bonnie, have you

Addendum,

Bonnie, have you tried melatonin">i?  I also have trouble sleeping and it really helps me.  I use a 1.8mg multiphasic product made by Ecological Formulas.  Other people use higher doses. 

Tina

 Tina-MSi 37 years;EDSSi 4.5   1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.

 

Tina, I have heard of

Tina,

 I have heard of melatonin">i but have not tried it yet. Wonder if this can be used with clonazepam 0.5mg that I am currently on for sleep.

Bonnie

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Hi Bonnie,This is a tough

Hi Bonnie,

This is a tough one.  I have had to go through some grief around losing my physical stamina and agility caused by MS.  Part of that grief is the real fear that I will be left out of the loop as I am unable to participate in some activities that require walking long distances, hiking, etc.  As I live with this disease I realize that I must cultivate  gratitude for what is going well in my life and at the same time hope and pursue improve.  The CAPi gives me a lot of hope.  I feel that I am experiencing incremental amounts of imrovement.  I realize that I must be patient.  As far as my friends go...the real friends hang in there when the going gets tough.  It also helps my relationships if i don't dwell on the negative and try to cultivate a positive attitude and a sense of humor.  It really is all up to me.

Fear and grief are a real part of this process but I don't have to get stuck in this.  Hang in there Bonnie.  I really believe that if you pursue health you will acheive it.  

Where ever you put your intention...it is there where you will go. 

Tina 

 Tina-MSi 37 years;EDSSi 4.5   1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.