posted
I've seen a good handful of doctors since I became sick in 2003 and none of them know what's wrong with me. I've been tested for Lyme and everything in between and have never tested positive for anything. Officially I am diagnosed with CFS and panic disorder. I've been put on antibiotics but the last time I herxed so bad with such horrible neuro/psychological symptoms that I wound up in psychiatric care. I can't seem to take anything without going utterly mad and feeling like I am going to collapse and die. We're talking a level above panic, (sheer and utter terror) hallucinations, air hunger, the left side of my body starts feels like every muscle has to clench, a racing heart that doesn't slow down for days, days of insomnia and a multitude of other extreme symptoms. What can I possibly do to gain some amount of relief from this beast that plagues my life? Is there a way that I can start off gently to get myself in a place where I could possibly resume antibiotics and not feel like I'd rather die instead? Even taking 1 gram of vitamin C will leave me reeling for an entire day. Any advice would be greatly appreciated, I just don't know what to do anymore...
Posts: 22 | From Salt Lake City, Ut. | Registered: Aug 2009
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Since you mentioned CFS, have you been tested for viral infections?
Regarding the herxing, that sounds horrible, but I don't have any suggestions except for starting out super super slowly. Maybe trying the herbal/alternative treatment route?
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
The only viral infection I ever tested positive for was EBV and that was many years back, around when I became sick. It was actually the positive EBV among other specific symptoms that led doctors to diagnose me with CFS. I'd love to try an herbal/alternative treatment route but I don't quite know where to start. Especially something that would be gentle enough as I've herxed from things like Grapefruit seed extract. Lately I've been thinking about trying a raw food diet. Any nudges toward information that direction would be greatly appreciated.
Posts: 22 | From Salt Lake City, Ut. | Registered: Aug 2009
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Vulpine,
Your story sounds like how it used to be for my daughter...terrible, terrible.
My daughter was diagnosed with CFS, also...years ago now.
It was like the treatments sent her over the edge somehow...how she did not have any control whatsoever over these things. The hallucinations scared the hell out of her and she would hear voices in her head...different ones with different personalities...all so horrid.
Insomnia was out of control, too, for her...days and days of no sleep...it about drove her literally mad at times...her only anchor to reality was me talking and talking and talking her down,auugh...I can't go there.
It seemed to be the worst for her a few years ago...and I wonder how old you are vulpine, if you are willing to reveal that?
My daughter was in her late teens early twenties when the situation seemed at its peak. I don't know, after observing her for so many years, I wonder if the extreme herxes is from being at a certain spot in one's illness, or a certain age, or a certain treatment sends people over the edge? It is a connundrum.
I say this, because she is no longer like that at all...and there was a couple of years throughout the journey (eleven years) when she did nothing at all about her Lyme...nothing.
She is much improved these days and does natural protocols now b/c she does not handle abx.
I wanted you to know that your struggle seems to mirror my daughter's a lot...that you are not alone.
Looking, back, though, I will tell you this...I do not know if keeping her on abx continuously was correct or not...I question that at times.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I found the Buhner herbs to be quite easy to take... If you start with Resveratrol and Red Root you should see some improvement. I found that it helped my CFS..
Other herbs that are easy to take are the Healthy Directions Bab1, Bar1, Lyme formulas. I can tell you how to get those without a practioner.
posted
momindeep, I find your post sooooo interesting! I am glad your daughter is doing better. Was she also diagnosed with CFS? How old is she now? Interesting when you say that she did nothing about her lyme for years, did she imporve though during that period? Thanks!
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
Oh, momindeep, sorry, i just saw that your daughter was diagnosed with CFS...still curious about her remaining symptoms...
Posts: 723 | From Montreal | Registered: Oct 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Shahbah,
She is 24 years old now...sick at 13. When she was not taking care of her Lyme she was able to maintain for that time period...not top notch at all, though...rather like on the edge of illness all of the time.
It was her rebellion against the illness, life handing her a bum deal, me...that she chose not to take care of business and I had to let her go...I had to let it rest because I knew if I pushed during that time, it could end up in areas I do not want to think about.
It about literally killed me to watch on the side lines for those years...not to say ANYTHING at all about LD...it had to come from her to want to change things...it was a gamble on my part, but it paid off in spades, so I made the right decision.
I look back now...it is mussings on my part, but I wonder if that time away from all of the protocols...helped her in the long run somehow?...and I don't just mean mentally, either.
It is such a puzzle.
She still has struggles, but nothing like it used to be...she tells me that even though she feels crappy, (from treatment) she knows she is getting better and she knows this within herself...and I actually understand what she is saying. She gets small bouts of insomnia, shoulder pain, stomach issues, blah feeling, but that is while she is hitting treatment...away from treatment she feels rather normal and well.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
My advice is to find a good LLMD right away. Do not accept a CFS diagnosis with such an obvious herx reaction to antibitoics.
Your left sided symptoms scream Lyme to me (it's insanely common for Lymies, do a search on the forum if you want), and possibly bartonella since your symptoms are so psychiatric. Bartonella herxes unbeliavably fast and if you take the antibitoics away prematurely not only does it "come back" immediately but it flarse like you've never seen. There are things to keep herxing to a minimum, for exmaple, starting with very low doses of antibitoics. You do NOT have to herx yourself into madness and you can find a doctor to help you do that. Parsley and burbur extract can be taken every fifteen minutes to help with extreme herxing, also.
Do not give up. And do not settle for CFS. You CLEARLY have infectons and you need to treat them before they treat YOU to an early grave. It is possible to do this, and even if you'll have to do it slowly, it will still happen.
Go to the "Seeking a Doctor" forum and find an LLMD, they will be able to help you!
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Vulpine: panic disorder ...the left side of my body starts feels like every muscle has to clench, a racing heart that doesn't slow down for days,
These are symptoms of low magnesium.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
You need to start on low dose abx and very gradually take more. There are many people with this problem.
I had to start doxy on 5mg. I also needed compounded doxy without any preservatives. You may need four months to get to a normal dose, but you will feel better every day and not slide backwards.
You cannot take one gram of Vitamin C. Also only take one medicine till you are doing a lot better.
When you introduce a new abx again start with 5mg.
My doctor ordered the meds compounded in low dose 25 mg caps, so I could divide it easily. A 500 mg tablet is useless for you, you cannot divide it.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Thanks you everyone for all of your posts so far, I greatly appreciate it! Momindeep, I'm 24 years old and became ill at 17. I can definitely see the similarities in her struggle. She's lucky to have such a caring and proactive mother. I'm curious, what sort of protocols has she tried? What has worked for her and what has failed?
Finding a LLMD is very important but the few that I've attempted to see here in Utah do not accept my insurance. When it comes down to seeing a LLMD in Utah, the prospects are slim.
Carol, I've taken magnesium supplements before but it seemed to do little. I had a test that measured my mag levels but I was told they were normal. I was however, supplementing at the time... With so many kinds of magnesium, what kind do you all suggest?
Once again thank you everybody, if you want to ask me any questions, I am an open book.
Posts: 22 | From Salt Lake City, Ut. | Registered: Aug 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You've gotten good suggestions.
I just want to add, don't get discouraged because you can't take grapefruit seed extract, it always made me feel horrible. There are other herbs you may be able to take.
I don't know what your diet is now, but eating more raw foods might be good for you. Maybe not ALL raw foods, because other foods like meat and eggs, also have value. You might also want to include quinoa, brown rice, millet, etc.
You might like Buhner's book Healing Lyme. He talks about various herbs and what they do.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Vulpine,
So sorry for this struggle you are going through and I am so sorry you can't seem to find a LLMD in your area.
Vitamin D is one thing that is very low for my daughter and had been for sometime. We tried the UV light and all, but she needs to supplement...by observation, I think that was a large part of her unease.
I cannot say if any one protocol was totally ineffective or not...just because we didn't see a benefit doesn't mean that there wasn't one.
She doesn't do abx right now because of intolerance...but takes herbs with antibotic, anti-parasitic properties and they have helped her a lot.
She is on a gluten-free diet, and that has helped her tremendously...but she suffered from many GI problems.
I wonder, and I am just throwing this out there for you to consider...could you be toxic?
One thing that helped my daughter when she was struggling with her mind is this and I had to tell her this many, many times: it is a bacteria in her brain causing havoc...not that she was going crazy...there is an organic reason for the hallucinations, and all the other horrific things that were happening to her and that truth gave her something to hang on to.
Hang in there sweetheart...try again with finding a LLMD...I realize it is exhausting, but don't give up right now.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Thank you everyone for your words of support, I deeply appreciate it. I bought some magnesium today, it seemed to calm my heart down enough for me to finally get some sleep. On another note, I'm going to definitely try harder to find a LLMD.
Posts: 22 | From Salt Lake City, Ut. | Registered: Aug 2009
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