I have posted here before, but I am putting as much together here as possible assuming some may not remember me. Thanks for any and all comments.
I am a 34 year old caucasion male (only slightly overweight) who has been plagued with a multitude of symptoms over many months. Clinically diagnosed with Lyme by LLMD. Some symptoms like bilateral neuropathy in extremities is more recent. Heart palps much worse after eating.
I do not know if my latest concerns are realted to Lyme, so I will throw it out there and see what you folks think. I do not drink or smoke. I have had issues with stiff neck and headache for sometime, and also seem to have issues an hour or two after eating (fatigue, marked increase in pvcs and heart rate, lower abdominal pain).
In the last 3-4 months, I have had numbness and pain in my lower legs/feet and lower arms/hands that is equal on both sides. I also have had some episodes of what I call waves of fatigue which comes with a general ill feeling.
I have also had pain in my abdomen (constant, separate of the eating pain) on the left side at or below the bottom of the rib cage.
I have had numerous tests and it was revealed yesterday that I have a very low B1 level. The doctor (neurologist, not LLMD) has recommended I take B1 tablets at 100mg to see how I respond. I also have a fasting glucose level that hovers around 105. I have a good appetite, am not losing weight.
I take a beta blocker, ace inhibitor, and paxil, and doxy. The lisinopril and paxil have been for years. I also take a multi-vitamin and B-complex, so I am surprised that I have a B1 issue. I take ascorbic acid, alpha-lipoic acid, milk thistle detox formula, and probiotics.
Workup: I have had been tested for lyme, co-infections, hep A,B,C, CMV, all negative. ANA, ESR, TSH, SPEP, Protein C, all normal. Heavy metals in blood and urine was normal. HbA1c, ALT, AST, lipase, amylase, bilirubin, triglycerides, cholesterol all normal.
Also electrolytes, B12, folate, homocystiene normal. MRI of head was essentially normal (1 tiny white matter lesion). MRI cervical spine normal. Celiac negative. EBV IgM negative, IGG positive. Some ketones in urine. Gastric emptying and gallbladder test (CCK?) normal. These tests were all within last 2 months.
CT scan of abdomen in June of 06 revealed a couple small (4mm) cysts in the liver, believed to be benign. I had pain then too and it ended up being peptic ulcers which were treated and as of March of 2007 were healed. I do not have the same kind of discomfort I had at that time, so I do not believe that to be the problem. I was taking aspirin which was found to be the cause. I am not on it right now.
My concern is what is the root cause of this, and is this really the reason for the neuropathy/and or other symptoms?
1. Based on my workup so far, what possibilities would you suggest as a root cause of the neuropathy, and do you think the B1 is really the cause? Is Lyme causing the B1 deficiency, or just causing the neuropathy?
2. What is the likelihood based on my workup that the abdominal pain (more like a constant gnawing pain/pressure at or below left ribs) is related to the neuropathy or B1 deficiency? Could it be pancreatitis?
3. If B1 is the cause, what if the oral supplements are not absorbed? Will shots work? Will the lack of absorption give clues to the root cause like malabsorption?
4. What next steps would you recommend?
Thanks, sorry about the length.
-Bill
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
posted
Any ideas...I do again apologize for the length. If anyone can help or relate to these symptoms I would appreciate knowing that. Thanks.
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
I know I had a very low B-12 level and did shots for a while, then went to taking B-12 under the tongue.
I believe Lyme and it's co-infections either utilize these B vitamins OR the body has a difficult time absorbing them especially with co-infections.
The tests for co-infections are not very good, so you can not say for sure that you do not have one.
You need to discuss further with LLMD to try and see if they can make a clinical diagnosis if perhaps Babs or Bart could be the culprit why you are not absorbing the B1.
In the meantime, it can't hurt to take a good B-complex supplement. They are water soluble and any extra you don't need gets eliminated.
Posts: 85 | From here | Registered: Jul 2007
| IP: Logged |
I've had lots of numbness with my Lyme. In particular my scalp (front and back/base of neck, never on top).
Numbness in my feet - arches. Will switch sides, usually not at once.
Several fingers get numb.
All come and go day to day.
All have improved on Doxy. Took around 4 months to get rid of a lot of it.
I get heart palpitations, too. They're almost more like a 'gurgle' feeling than an early beat palpitation, which is strange. I do notice them a bit more after I eat. They have gotten better on Doxy, but still come up sometimes, especially if I get tired.
Get rid of any caffeine in your diet and watch your sodium. Avoid MSG.
The pain under the left rib cage - just a thought. I have gotten that before. Often it's more of an intestinal thing. Your intestines wrap all around, especially under the rib cage.
If you're not 'regular', or have eaten a heavier meal or not enough fiber, sometimes you can get a pain from that. Almost like a kink up under the rib cage. Can be sharp or a dull ache.
Some Metamucil and a big glass of water for a couples days might help. Just a theory.
How long have you been treating with Doxy?
Have you switched off to a different abx, like Amoxicillin?
Sometimes switching helps. I'm doing that now as the Doxy hasn't helped clear up the ear congestion & buzzing.
It's a lot of trial and error.
I really hate the numbness - it's scary, but it does go away with treatment.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
| IP: Logged |
I have switched from Biaxin to Doxy, and now am on both. I am having some blood slides made to "see" if evidence of infections/cellular issues are present.
I realize that not seeing anything in the slides does not mean I don't have it, but the LLMD recommended this particular test and I guess they are LL so this might be good. It does cost $$$ so I have had to wait a couple extra weeks to be able to afford it (sort of).
I am not sure why my thiamine levels are so low, but I am supplementing and may get shots from the LLMD. The above study may help explain the reverse...the low thiamine levels are making the glucose levels higher as it can't be as readily utilized.
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
quote:Originally posted by gismatrix: I have also had pain in my abdomen (constant, separate of the eating pain) on the left side at or below the bottom of the rib cage.
2. What is the likelihood based on my workup that the abdominal pain (more like a constant gnawing pain/pressure at or below left ribs) is related to the neuropathy or B1 deficiency? Could it be pancreatitis?
This is EXACTLY what I have since about 8 years. This pain/pressure is constant but intensity changes. They did every exam they could think about and didn't find anything.
So they told me it came from my intestines which make a sharp bend in this area and if they were full this would cause the pressure. However, for a coloscopy, I was emptied completely and this did NOT change anything. I mean the pain was still there.
Interestingly, I also have a little cyst in my liver - but the liver is on the other side so it will not cause this pain.
In a German text about symptoms of Lyme this pain under the rib cage (can be right or left side) is due to a nerve inflammation in the backspine. I just find it strange that NO abx that I have taken until now (and I had a lot) was able to get rid of the pain.
Sometimes, I have the same pain on the left side and also on my back - all at the same height, like kind of a ring around my body. But this comes and goes and the pain on the left side is contant.
Bottom line: I also don't really know what causes it. Sorry.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
My spleen is enlarged and I have pain in my ribcage like you describe. Not sure that is what it is or not..
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
The pain on the left side, I would think the CT Scan would have found anything serious. It's funny because you mentioned Pancreatitus and I just had a bout with that about six months ago.
The pain from Pancreatitus for me anyhow was my whole lower stomach and eventually went around into my back on both sides. It got that bad before I finally went to the Hospital to get checked out because I figured it was just another Lyme thing and they would end up finding nothing.
A while after that I went to my Gastroenterologist and he said it was more then likely the Hydroxychloroquine I was taking with Biaxin that caused it and suggested I get off that medication and I stopped taking it after checking with my LLMD.
The other funny thing is, right before Christmas we had a snow storm here and I went out and used my snow thrower to clear the snow, I also did three of my neighbors because they are very old and I feel sorry for them.
Anyhow, when I got back in, I had a slight pain in my lower left side. I thought I either pulled a muscle or maybe a hernia. I waited a few days and it started getting worse.
I made it to my MD but could not get up on the exam table and he called the rescue and off to the Hospital again I went!
They did a CT Scan and found a new one for me on the books! Epiploic Appendagitis, it has something to do with little bumper pockets of fat around the colon. It can take up to six months to heal and it still hurts but at least I know what it is.
So the point of this story is, if you just had a CT Scan and they found nothing, it's probably ok.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
| IP: Logged |
posted
I don't think the pain is sharp enough to be EA. I had a colonoscopy last year that did not reveal anything. The pain is dull enough sometimes that I can ignore it or forget about it for a while.
I have flat stools from time to time but not always. They tell me it is IBS (which is another way of saying "we don't know") but I wonder how much Lyme could be the cause. I had this before abx and it does seem somewhat worse on them. Maybe the moderate hiatal hernia is flaring up and causing this pain...I don't know.
What concerns me with this is the light "tremor" that I have developed along with these waves of fatigue. They strike me like Superman being exposed to kryptonite. Then after a while I am fine. Ah the world of Lyme. I always wanted to be able to identify with something, just didn't know this would be it.
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
posted
My calf muscles hurt/ache pretty bad today. This thiamine deficiency stuff is starting to worry me. My LLMD wants me to do a spectracell sp? test. Anyone have this? It measures vitamins (and other constituents) at the cellular level.
Anything good for the calf pain (natural or supplement type rememdy?)
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/