posted
The past few days it feels like my legs are going to stop working altogether. THey feel on fire on the inside, especially my R leg. Burning stabbing pain.
Keep in mind, I've had nerve pain for 7 years constantly so I'm not talking about just some random pains.
I take small dose of morphine 3x and day and have for years. I have oxycodone for "breakthrough" pain, but it's certainly not breaking through for me now.
I'm losing muscle mass where the burning is the worst. Like yesterday, R leg just above the ankle on outside of leg..just burning, burning. I put an icebag on it hurt so bad..
Last night I was in the kitchen (few times I was out of bed yesterday) and noticed my leg looked really funny. Normal looking muscle, etc..except for ankle (outside) and about 3 inches above. It looks like a big sunken in place. It feels like all the tissue is gone and there is only skin and bone there.
I know this wasn't this way on Tue. when I put my shoes on..I think I'd have noticed.
This has happened before, although I'm not sure this fast or bad..but the last time doctors all just dismissed it and said I need to exercise more or I will lose tissue. That maybe I needed to not wear my braces so much in order to strenghen muscles. and that was llmd.
ANywho, I haven't worn my braces in several years due to getting better from antibiotics. I guess I have not been as active lately, because of the worsening of lots of symptoms..but, tissue just going away in a day or 2?? doesn't seem the natural course of things. I haven't been bed bound. Still walking around house, going to store, etc..
I told my dh and showed the leg to him and he said, " well, you just need to get more exercise. You will loose muscle if you don't use it"...I realize that, but how can it happen this fast?
Oh and I also take Neurontin. I hadn't taken it in years until the past few months as I have been getting worse and worse.
I'm not on near the dose I was back then but I guess a starting dose as I just started a month ago. (900mg 2X day) It seems to help the pain and make it easier to walk, and help the dizziness some..
I have not stopped my abx, although I'm thinking about switching to something else. I've been taking Clarithromycin and Doxy for a long long time now and think it needs changed as I'm doing so much worse, but my llmd won't change it.
I don't see him again until Jan. So I'm not sure I can deal with this until then. I've been looking for a new doc. My dh has applied to several jobs so I'm kind of waiting to see if he gets one soon and I'll look for someone near there.
Does this foot thing sound like Bart to anyone. I have never tested positive for it, but I seem to have alot of the symptoms of it and babs too. Do you think it's worth getting something for bart and see if it will help this stuff?
I'm really afraid I'm gonna have to drag out my leg braces very soon..ugh
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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Go through the list and consider how many symptoms you might have. If you have some, I think you should discuss this with your doctor before January. Maybe a phone consultation?
I know that some abx are better for Bartonella than others. There are also a number of herbal formulas. I am currently taking Byron White's ABart. But I think you really need to see a Doc sooner than January if you dont feel you are on the right course of treatment. The issue of doing more exercise is always important to us Lymies. I know that when I can keep up my activity level, I feel better. I hope this helps...
Posts: 164 | From California | Registered: Aug 2009
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I'm a big advocate on this board for reminding people to check nutritional deficiencies which can be worsened by taking certain medications and by lyme itself....
Please make sure you are taking enough B12 sublingually (NOT orally) or getting B12 shots for your neuropathy....Also, please make sure your Vitamin D levels are in the normal or upper normal range as Vit D deficiency can cause severe muscle and joint pain...
Sorry you're hurting!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
thamks pooldog and bugg. I counted 16 out of 21 bart sx I have had more recently, and have had all at some point.
My doc won't treat me b/c my bloodwork doesn't test +, even though he admits the tests are unreliable.
I wonder if this is why I didn't improve on rocephin, and why my abx have stopped helping me.
I am taking them but they don't seem to be doing amything.
I have doubled up on my sublingual b-12, but it doesn't seem to matter either. He does bloodwork to check all that (vitamins) each visit, but never said it was back low, or vit. D. I've also had bw done recenly by my pcp who didn't find anything wrong.
The only thing I've changed recently, or really in 2-3 years is I cut back some on vit. c. It's been hard for me to swallow 14 of those a day..
I am going to try and exercise. I am just afraid of falling with my feet and legs worsening and the dizziness I've had for a month or two.
thamks for the replies..
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Twicebitten-for what it's worth, I almost feel like throwing the damn lab panels out the window when it comes to 'normal' for those of us with neuropathy.....I would strongly consider taking ample amounts of sublingual B12, the RDA for B6, and the RDA for folic acid....All of these help nerve healing/function...Also, I don't know what drugs you've taken but some can cause nerve issues...You might want to research your meds to see if any potentially cause/exacerbate neuropathy...
For ex, there are a number of cancer drugs that cause neuropathies (many get relief with alpha lipoic acid)....Some who take statins get neuropathy and muscle pain and need more CoQ10....Some who take proton pump inhibitors need more B12 because they can't properly absorb it.....
I would definitely strongly consider Vitamin D...it dramatically helped with my muscle pain and stamina....Sublingual B12 after TWO MONTHS has helped my nerve pain but it took two solid months of taking it...
Hang in there!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Some other things to consider:
When I had RSD (severe burning pain), I found magnesium and Benadryl to be most helpful for the pain (RSD may have a vaso-spastic component). RSD can cause muscle wasting (it did for me, but it is usually a slow process and not sudden).
The area on your leg may be from fat pad loss instead of muscle loss - and Lyme is known to do this (search on Acrodermatitis Chronicum Atrophicans).
But for muscles to be maintained, one must be taking in enough protein. Whey protein powder (should be ok even on an anti-inflammatory diet because it is the casein and not the whey proteins that are implicated to cause dairy-related inflammation) or egg protein powder may be a beneficial addition to your diet, if you aren't allergic.
Sounds like you already know you need to be addressing other infections or change your Lyme treatment protocol. Have you considered trying some of the herbal options for Bart and/or Lyme and/or Babs?
Blood tests for B12: The "normal range" used here in the USA is well below what is used in other countries around the world (Japan, Europe). In the US, a blood level of 300 is considered normal, whereas in Japan, this would be considered too low and supplements or shots would be prescribed. If I were you, I'd get copies of lab results every time you get labs drawn so that you yourself can see what the actual numbers are. Many doctors gloss over abnormal results when in fact there may be other indicators of what's going on that they are missing, ignoring, or just plain ignorant about.
Also, Gluten (wheat/rye/barley and sometimes oats) can cause peripheral neuropathy -- there are cases of known gluten related triggering of antibodies to the nerves themselves that go away when the diet is modified to exclude gluten. It may take more than a few weeks gluten-free to see whether eating gluten-free makes any difference; the nerves are very slow to detox.
Fatty Acid deficiency can also cause a lot of problems with nerves. Fatty acids are needed to form the myelin sheath (along with Vitamin B12, so this is a critically important nutrient), and fatty acids are also required for cell membranes.
Electrolyte imbalance and Dehydration. Electrolytes are used for nerve transmission, so any imbalance at the tissue level (in the actual tissues themselves - there isn't really any blood test that can show this) can cause various neurological symptoms (tingling, numbness, nerve pain, etc.). Dehydration masks or accentuates electrolyte imbalance, so it is important not to become dehydrated.
Medication side-effects - Many meds can cause peripheral neuropathy and I'd encourage you to discuss your meds with a trusted pharmacist...they are usually more aware of side-effects than MD's.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Razzle
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Member # 30398
posted
Oh, forgot to add, soaking your feet/legs in warm (not too hot or cold) Epsom Salt water may help soothe the nerves, reduce inflammation and correct the tissue-level electrolyte imbalance.
A world-reknown RSD expert Neurologist told me never to put ice on nerve injuries because it renders the injured nerves brittle and then they can become even more injured with movement. He always recommended warm (not too hot) soaks vs. ice for nerve conditions.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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I've been on b-12 sublingually since around 2005, before that one neurologist gave me shots for months to bring my levels up, due to neuropathy and parietal antibody stuff. I've been doubling up on my b-12 for the past 2 weeks or so. I may go ahead and go to pcp and get a b-12 shot and rx for more needles and b-12 to give myself more shots to be sure.
I need to research my meds. I just don't get why it would worsen so suddenly when I really haven't changed anything.
I've never tried no gluten diet. I guess I can try that. Right now I don't even feel like getting to the store. I live in such a small town there are no health food stores and very little specialty items in the store. I will be going to a pain clinic appt. next Tue. so I can go to health food store after that.
I didn't know not to put ice on it..It's just SO hot here. I have been taking hot baths almost daily with epsom salts too, it does feel good for a little while following the baths.
Does anyone have any suggestions on what to try for Bart? Should I just get some cipro or try the A bart herbs or something. AND, if I do, should I discontinue my abx I'm on? (clarithromycin and doxy) I need a plan while I try and find another llmd and wait for appt.
Thanks Bugg for your input as well. I take 5 vit. D gel caps a day. My current llmd is very adamant about vitamins. The only one I've cut back on recently is the Vit. C, it seems so excessive to me.
THanks for the info. I will investigate more on this when I can. Take care all
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Vitamin C reduces inflammation, so maybe you really do need the high dose recommended?
There are online sites from which you can purchase gluten-free products and have them shipped directly to your doorstep - check out http://gfmall.com/ (I have no financial affiliations with this website or any sites mentioned on this website)
And yes, I agree with the idea to try the B12 shots, since you mention the anti-parietal cell antibodies (Autoimmune Pernicious Anemia).
I hope this helps...take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Wow, I completely echo what Razzle just posted....Please note that if your doctor found anti-parietal antibodies that is usually a life-long condition. This is pernicious anemia and is is an autoimmune disorder. It is where your body's own immune system attacks the parietal cells and keeps you from properly absorbing B12. I understand you've been on sublingual B12 but you absolutely may not be getting enough for your condition. I implore you to "google" pernicious anemia and read all that you can. I also implore you to google "pernicious anemia society" as this is and organization that has lots of literature on the subject. Many of these people need to take a series of B12 shots several times a week for a number of weeks. Then they can switch to B12 sublinguals.
PLEASE NOTE THAT IF YOU WERE TAKING B12 WHILE YOU HAD YOUR SERUM TESTS IT MAY GIVE YOU A FALSE IDEA THAT YOUR LEVELS ARE NORMAL IN YOUR TISSUES WHEN THEY AREN'T . THIS SERUM TEST IS A MEASURE OF THE LEVELS IN YOUR BLOOD WHICH WOULD BE ELEVATED IF YOU WERE TAKING B12 BEFORE THE TEST....
Low B12 levels will not only cause neuropathy, pins n needles, all-over aching, joint pain but it can also cause anemia where your body is NOT PRODUCING enough red blood cells. You need RBCs to carry oxygen to the cells in your body. Without this, you will feel extremely fatigued. Some people even develop a sore tongue.
I'm just concerned you may pursue Bart treatment without really exploring the anti-parietal cell issue.....
Just want you to feel good again!!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Thanks Bugg, that is why I want to go to pcp and get shot 1st, and some more liquid to self inject like I used to. My neuro had me on very high doses at first and then slowly tapered them down to 1 shot a month.
Then my pcp said it was okay to switch to sublinguals, and I had asked my llmd, which said it was fine.
Now I'm wondering if it really was fine?
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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