posted
I was told last night that the left flank pain is neuropathic but I just don't see this as true so here is the situation.
I have felt recently that I may be constipated and so every three days or so I take two senokots (which are very gentle and have taken many times before over the years). Saturday the flank pain was starting to get intense again and so I took the senokots.
I never have an appetite and eat very tiny portions of things. Sunday morning I had one piece of toast.
When I woke Sunday morning the pain was so bad I thought I might pass out several bm's later (I know gross, sorry) the pain changed to a severe inflammation type pain and I took 1 tylenol three. An hour or so later the pain submerges to its usual constant discomfort so I am thinking great maybe constipation is one of the problems.
I was so much better I was able to go to the grocery store to pick up a few items when I came home I ate about 3oz of a BBQ chicken (no skin) and two tablespoons of potatoes.
After about an hour the pain starts to increase again and then the pins and needles head zaps, heart racing on and off, tremors, light-headed, my whole body feels so weird. By this time the flank pain has once again become severe.
After coming back from the ER last night, apart from being completely exhausted and in great pain I realized that my abdomen was bloated really badly and had a really bad backache. Only had about 4 hours sleep but the pain is still there. I have had one piece of toast today.
I feel that my food is reaching a certain point in the digestive process and then it gets stopped although there is a lot of too loud gurgling going on. Surely if this was just neuropathic pain I would not be having digestive issues.
I have two thoughts if they think it is neurological could it be that the nerves in the digestive system are not functioning and causing digestion to be slowed down.
Or perhaps there is some kind of blockage slowing down the process that did not show up on an ultra sound.
I think this has been slowing down my recovery process and maybe even the problems I have in taking the antibiotics. I have read somewhere that if food and medications stay in the digestive track too long it can make you feel quite ill.
Is any of this possible? Has anyone ever experienced anything like this or am I just being a little crazy.
I do have one positive thing though; the numb patch on my left leg is hurting today, now that surely is a good sign.
I am just trying to get this all straightened out in my head as I have the picc line inserted tomorrow and I am seeing the new neurologist on Friday for a second opinion, or maybe even a first opinion as the only thing the other one has told me is that it is not MS.
I know this is long and I really, really appreciate any advice. It was awesome yesterday when I was so panicked to be able to come here and get some rational input.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
I don't know, could it be diverticulitis? sorry you're going through so much. My flank pain disappears and comes back. take care
Posts: 255 | From - | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Porphyria can cause neuropathic pain anywhere in the body.
Tylenol #3 can trigger an acute attack since both ingredients in it are very hard on the liver. The chicken, too, can exasperate the problem as those with porphyria can have problems with meat, especially during times when porphyrins are elevated.
As well, NOT eating for many hours can also trigger a porphyria attack. Carbohydrates are required to keep the porphyrin level down. In an emergency, glucose can save a life.
For on-going self care, it may be enough to consume foods rich in beta carotene - with a reasonable diet that includes a variety of complex carbs from whole foods that provides a steady blood glucose level in your body. Letting blood sugar drop can spell disaster for anyone with any kind of porphyria.
GI distress, constipation (that sometimes alternates with painful diarrhea and severe cramps) is classic for porphyria.
As Karen says, yes, this could be porphyria. Other than gatorade, carrot juice or greens powders will also help. Large doses of BETA CAROTENE is a treatment for porphyria.
Excess porphyrins can cause neurological damage of various kinds.
Infections - and a "herx" can also be connected to porphyria, just one kind of liver stress resulting in a toxic level of elevated porphyrins. There are at least eleven kinds. More about how at least one kind is see frequently with lyme patients: -----------------------------------
SECONDARY PORPHYRIA: what you should know before starting a CAP (combined antibiotic protocol)
=================
KPU (Kryptopyrroluria) is just ONE type of porphryia that seems to have importance regarding patients with lyme, autism and those who have issues with heavy metals:
[ 03-08-2010, 01:12 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see that you mentioned toast above.
If you go GLUTEN-FREE, you may see a remarkable improvement. That is really something to consider and I missed it before.
Pain from gluten can affect the entire body and cause neuropathy, too. The pain from gluten can be extraordinary, too, in so many ways.
But mostly, somehow the amounts of food you consume need to increase. Can you get some organic vegetable juices? QUINOA is easy to digest and very nutritious, provided some good carbs but also with a good amino acid ratio.
More food is needed than just a few tablespoons. In addition to vegetable juices and quinoa, you can puree soups. An immersion blender (hand held) is best so that hot liquid does not go into a plastic blender.
Baked or steamed YAM, too. The brighter in color the better, like a GARNET YAM as that has more beta carotene.
There can be any number of reasons for what is happening. I have both celiac (genetic problem with gluten) and two kinds of porphyria. So, I tend to think of those things. It would not hurt to consider them, make dietary adjustments, and see if there is some improvement. Then you can go from there.
Many lyme doctors suggest their patients avoid gluten. One LLMD has estimated that 80% of lyme patients have problems with excess porphyrins.
Whether from porphyria or gluten, before I knew all this, I had my share of ambulance rides - but YEARS of excruciating pain. This can be prevented. Even if you don't have genetic celiac, avoiding even a trace of gluten can make a huge difference. And it's so much easier now - more options in the marketplace.
Good luck. I hope you get this sorted out soon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Pugs, thanks diviculitus was ruled out via a colonoscopy 2 years ago although even after giving me two doses of sedation they still could not finish it as I was in so much pain at the same place. They then sent me to have a bieriam exam who said it was find
Keebler, sorry but Porphyria is way out of my mental capacity right now, I have never heard of it before and could not understand it this morning, I will try again when feeling a little better. I never have diarrhea or even cramps wish I did maybe it would feel better.
The tylenol three seems to be fine I took one about two hours ago and have had a sleep and the pain is minimal, I have only recently started taking it but have had the pain for a long time. Oops speak too soon it is coming back.
I did do the gluten free thing about six months ago and also in the first few years of this illness nothing seemed to change. I did so many exclusionary dietes at the beginning.
I agree I need to eat more, but I have not been loosing any weight and I do try to eat something every couple of hours.
So do my thoughts on what could be wrong sound to wacky?
Good feedback though thank you.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, you are to start IV abx tomorrow (?) so I'm sure your LLMD will address this today or tomorrow for you.
Will you have good liver support?
You might want to save the set of porphyria links to your file just in case you want to refer to that in the future. Diarrhea and cramps do not have to be present but I just mentioned that it can alternate with constipation at time. Constipation is just one of the major symptoms can may (or may not) occur but can be accompanied by cramping - not just of the lower abdomen but of many muscles systems.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I don't know, it sounds like the gall bladder to me. I do know that some antibiotics cause the bile to sludge and can cause problems in the biliary tree. I don't think I saw where you said which side of where this pain was that you are experiencing?
LaurieL
-------------------- �Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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Keebler
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Member # 12673
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