I am honestly in tears right now it's so bad. It's just my right leg from about my ankle to my knee. It's not just itchy but very prickly and scratching doesn't help at all.
Does anyone know what this is? Is it some kind of nerve thing? All my symptoms are always worse on my right side and this is on the right as well.
[ 02. October 2008, 12:38 PM: Message edited by: laura j ]
Posted by laura j (Member # 14257) on :
I took a HOT bath and it's a little better but now my rt. leg feels kinda heavy, numb and tingly. Must be nerve related.
Please, has this happened to anyone? Do you know what it is?
Posted by Allie (Member # 10778) on :
Almost every day for the past 3.5 years I've had itching/tingling from my ankle to my knee on both legs.
It has lessened a huge amount over time and TBI treatment.
I still get it, though. It is much worse for me at night. Is yours worse at night?
This is one stinkin' symptom I can't get rid of.
The only time it abated completely was when I was on Rocephin/Tindimax for 3 months. Since then (1.25 yrs) it has slowly crept back.
As to what it is, I'm not sure. I think the most likely culprit is nerve damage from Lyme. I have small fiber peripheral neuropathy documented with biopsy (very low nerve density). So I think the "pain" could be the nerves dying.
Other thoughts I entertain are toxic overload that pools in my legs due to gravity or hypercoagulation (but I have not been tested for this).
Do you have high bilirubin? I do, especially on certain meds (e.g. mepron/zith). These germs can go intracellular, so maybe the pain comes from dead and damaged red blood cells floating around and sticking to the walls of blood vessels (like sickle cell anemia)???
Well, I've given my discomfort a lot of thought, but I have no answers.
Maybe someone else does????
Best of everything, Allie
Posted by laura j (Member # 14257) on :
Thanks so much for replying. My biliruben does tend to be slightly elevated and was even before starting any meds.
If it is nerve damage I really hope it's not permanent. I don't have it only at night but randomly and it's not constant but it's so excruciating when I do have it that I'm tempted to rub my leg w/sandpaper! It always brings me to tears which I hate b/c I hate my little girl seeing me cry.
I did email my LLMD last time it happened but I don't think I gave her enough details b/c all she said was maybe b/c it's allergy season. All I said though was that I was itchy. Guess I have to elaborate more.
I'm guessing nerve related since my leg got numb and heavy afterward. I'll have to look into hypercoagulation or the red blood cell thing though. Also toxic overload, that sounds like a strong possibility too.
Posted by Allie (Member # 10778) on :
Hey laura, I don't let myself scratch. It absolutely WON'T help. I do not scratch my legs EVER. I might rub occasionally, though.
I've scratched my legs raw and it doesn't help. I think it makes it worse.
I know how hard it is.
At the beginning (remember I am MUCH better now), I wore knee socks. This kept any stimulation on legs to a minimum.
The weird thing is sometimes right at the place the sock band is I get much worse pain (prickling, itching...).
This is why I was wondering about stuff sticking in my vessels (dead blood cells or hypercoagulation). But this is just conjecture. I have no idea what is happening.
So, don't itch, buy socks.
Allie
Posted by hurtingramma (Member # 7770) on :
I get the same thing - also on my legs and once in a while on my arms. I also have small nerve fiber peripheral neuropathy.
My LLMD prescribes Hydroxyzine for it (Attarax)
A baking soda bath does help, but tends to increase numbness and tingling.
Posted by laura j (Member # 14257) on :
Interesting that you say it's worse around the band of the sock. I sometimes wear ankle socks and it's also SO much worse around the band. But today I wasn't wearing any socks.
Don't know what I'm going to do for the winter. I went to a big fair the other day and was hoping it would be warm so I could wear my flip-flops b/c I know if I wore socks and sneaker I'd be a mess.
Do you guys think this will eventually go away w/treatment? I'm glad to hear it's better for you Allie.
Allie and Hunting gramma, what do your LLMD's say? Do they expect it to go away?
Posted by minimonkey (Member # 8693) on :
My understanding of this is that if it is actual nerve death, you are likely to be left with numbness and movement difficulties in the long run, after the discomfort ends.
If it is non-death neuropathy, it may well resolve with treatment. Mine has gotten a lot better in time. I've taken Lyrica periodically for the nerve pain, and it did help, though it has a lot of side effects I don't like.
Posted by Lymetoo (Member # 743) on :
You might try treating for systemic yeast and see if it helps.
Posted by dmbfan (Member # 11948) on :
me too!! I've been so itchy for the past 3 weeks. Mostly my scalp, face and palms. but have had it all over my body, to the point where I am stripping off my clothes.
I started difulcan and haven't seen results yet.
AFter 6 months off abx, i started back on again yesterday, doryx. we'll see if that helps.
the only thing that helps is to keep busy, if i sit around i wind of scratching myself crazy.
good luck
Posted by laura j (Member # 14257) on :
Really? Systemic yeast? That could cause this?
I just looked at my leg and it's all bruised from scratching. It looks awful! It was so exruciating though that there's no way I could have resisted scratching.
Not sure how to go about treating for systemic yeast. Would it give me one sided symptoms? Actually, I've had a strange rash also on my rt. leg on the back of my upper thigh and I don't know what it is. I was kind of thinking that could be yeast.
My dr. gave me a cream for it though that is a antifungal/steroid combo so if it works I won't know exactly what is causing the rash b/c even if it's not fungal then it would work for an allergic type skin problem b/c of the steroid.
I was also thinking that if it was a biliruben thing that it wouldn't just be on one side, right?
Posted by Hoosiers51 (Member # 15759) on :
Could be bartonella? I had what seemed like a Bartonella herx that involved this symptom.
Posted by BOOB00 (Member # 17526) on :
It could also be Fibromyalgia. My accute Lyme infection kicked off severe FMS in my entire body. Between the Chronic Lyme and the FMS I get what feels like electricity in my arms and legs. Any clothing makes it worse.
My FMS treatment plus Lyme treatment has helped it, but I still have it, just not as severe.
Posted by kickatick (Member # 17446) on :
I had the same thing, peppermint essential oil helps,mine got so bad i bought a biomat..complete relief, also there is a wonderful supplement thats a real killer antioxidant to boot (blood brain barrier too) Alpha Lipoic Acid is wonderful for neuropathy..relief in as little as 24 hrs.And the stuff is cheap...the "R" is supposed to be the best.all natural non synthetic.
Posted by James Marschner (Member # 13073) on :
Take a high dose of Valium, NOT Xanax, or Klonopin. Valium actually works. Halcion would probably work even better...but it's horribly addictive and almost impossible to get.
I felt like I had maggots clawling thru my limbs, causing itching, crawling, tingling feelings. My brain seemed to respond by exciting the rest of my body.
I took 40mg of Valium in one dose, and it took the edge off only. Xanax doesn't help this symptom for me at all. Need a stronger CNS depressant.
This was one of the worst symptoms and it HAS subsided for me now. Also I should mention that I am NOT addicted to Benzo's yet after around 5 years of use. Some days I don't even take any.
So, it does get better. It won't be like this forever, so do what you have to, to get thru the treatment.
Posted by laura j (Member # 14257) on :
Thanks for your responses. My LLMD did email me back and she said the prickling and itching are typical with nerve inflammation and that it's most likely a herx.
I hope so. I can cope w/it knowing it's a herx but the thought of sliding backward would be hard to swallow.
I really hope I don't have to resort to meds for this but if I have to I guess I will. It's not good for my daughter to see me in such agony.
Posted by psano2 (Member # 11711) on :
This is just my opinion, but I really think any itching/prickly feelings are due to bacteria/bugs in the skin.
Recently I tried Venex (bee venom) ointment, and found it to be very effective for my problem...it also caused a big herx shortly after applying it to the skin. I'm now using it all over every other day or so, and have been herxing really hard with it, but in between, I'm starting to feel much better than I've felt in years.
I was really leery about using bee venom at first, but my LLMD actually suggested that I might try it. He was talking about the injections, I think, and that was too radical an idea for me to wrap my head around at the time, but when I learned of the ointment, I decided it would be a safer route to try, and bought a tube.
I started using it tentatively, on just a few itchy spots on my scalp and other places, but one morning I woke up and the sole of my left foot was killing me. I'd had painful soles in the past, but not recently, and not this severe. Since the tube was by my bed I just reached over and rubbed some on my foot and the pain went away almost immediately! It was amazing!
It does burn a little when you first put it on, but that sensation goes away pretty quickly.
Of course, if you're allergic to bee stings, you can't use it.
Posted by laura j (Member # 14257) on :
psano2,
What kind of herxes did you get from the bee venom? This is actually something I've considered.
Do you know the mechanics behind it? Does the bee venom actually attack spirochetes or does it does something to the body to help fight them?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by laura j: [QB] Really? Systemic yeast? That could cause this?
When I have yeast really bad I will have trouble falling asleep. Why? Because my left leg will jerk and I'll itch on the same side. Like it's itching from within.
The first yeast symptom I get is scalp itching.
Posted by laura j (Member # 14257) on :
THANK YOU Tutu! I needed it spelled out for me. That post had the exact info I was looking for.
I was wondering about a couple of things though. It said to use flaxseed oil. I thought a recent post said that was a big no-no for Lymie's so I gave my combo Flax, Fish and Borage Oil to my mom and bought just plain Fish oil.
It also said soy milk was ok and I thought it was bad for us also.
Makes sense as to why I feel worse on olive leaf extract too. Probably hitting the yeast. Maybe some viruses too.
....so I guess the brownie I just ate was a bad idea...not that I didn't already know that. Posted by Lymeindunkirk (Member # 7118) on :
Doesn't adrenal fatigue, due to your lyme infection, and/or yeast cause itchiness?
Posted by psano2 (Member # 11711) on :
laura j,
My herxes are that my eyes start drooping, I get this "pressure" headache behind my eyes, headache, and brain fatigue (& fatigue in general). Sometimes my muscles ache depending on where I apply the cream.
I just got a shipment in the mail today, and she put in a couple of articles about bee venom and Lyme & MS. One was especially informative. It was written by a DDS/DO by the name of CJ Hussar, and he/she referenced an article published in 1997 in "Clinical Infectious Diseases" which demonstrated that a major ingredient of bee venom, Melittin, had a powerful inhibitory effect on the growth of Borrelia in a test tube, or "in vitro" study. Melittin was able to interrupt the cell membrane of the spirochete in addition to having a negative (inhibitory) influence on its motility."
What was nice is that the specific reference was also footnoted:
Lubke, L. and Garon, C.E. "The Antimicrobal Agent Melittin Exhibits Powerful Inhibitory Effects on the Lyme Disease Spirochete." Clinical Infectious Diseases, Vol. 25, Supplement 1, July 1997, pps. S48-S56
I'd like to mention that I put a little bit of the cream on the bridge of my nose, because I wanted to get it close to my eyes, which have had continuous issues. Besides the drooping, they've itched constantly and been bloodshot. I only did this once last night, and today my eyes haven't been itchy at all. You're not supposed to get the ointment in your eyes, so if you're sweating, don't apply it near your eyes, because your sweat might drip the ointment into the eye accidentally.
When I placed my last order, I learned that they have an eye drop available also, which can be instilled in the eye, nose or ear, so I ordered it and will start that tonight. The eye drops are not made by the same company as the ointment.
The ointment is really powerful stuff. I've had this "callus" in an odd place on the bottom of my left foot for quite some time, and only when I started applying the ointment did I realize that it was really a kind of lump. Then I felt my other foot and it didn't have the same lump.
Since then, I've put ointment only on the callus a couple of times, and I've herxed from that alone! Plus, I really feel like the callus is getting smaller. From my experience, I think that lump is a huge colony of Borrelia or some other co-infection. It's just a sign that we're totally infested! I'd read other people mention having "lumps" before, but I never put it together with this callus on the bottom of my foot. I think it must be what they're talking about.
Today I've had the longest period of feeling well in ages...several hours at least.
I'm going to continue using Venex on a daily basis and see how far I can go with it, but it has made me really optimistic for the first time that I might be able to beat this.
I'm hoping that instilling the eyedrops in the eyes (or ears and nose) will somehow get to the brain and treat the infection there.
Patti
Posted by laura j (Member # 14257) on :
Patti,
Sounds great! Are there any risks or dangers w/bee venom?
Posted by groovy2 (Member # 6304) on :
Hi Laura
Babs can cause VERY Bad itching problem- I had it for about 10 yrs before I started treatment for Babs-
With good Babs treatment the itching has gone away- AAAAhhhh-- Jay--
Posted by psano2 (Member # 11711) on :
Hi laura,
There doesn't seem to be a lot of information on toxicity. It seems that no or very few long term studies have been done to follow the potential side effects.
The information provided to me by the retailer is what you would expect, i.e., Do not use if you're allergic to bee stings as it could result in a severe reaction even death. Keep out of reach of children. It hasn't been evaluated by the FDA. They make no promises or guarantees as to its effectiveness, and by purchasing it, you assume full responsibility for its use.
The most important precaution is that if you have an allergy to bee sting, you should not use it, for risk of anaphylactic shock.
You should google the topic and see what kind of information you can find, but I couldn't find much myself.
If you don't know whether or not you're allergic to bee stings, then you should probably only try it with an Epipen syringe available in case of an anaphylactic reaction and someone with you at the time to administer it just in case. Epipen is only available w/a Drs prescription.
I'd been stung many times as a child, and knew I wasn't allergic.
By the way, I applied the cream again last night before going to bed, and I feel even better today. Since my main herx is drooping eyes, I didn't instill the eye drops until I was ready for bed, because sometimes I can't see because my eyes almost completely close up, and that's what happened last night. By doing it just before bedtime, I can sleep through the worst of the herx.
When I first woke up, my eyes were still a little droopy, but not completely shut like when I went to sleep. After I'd been awake a while, my eyes began to feel fine, and now I feel pretty great, actually. That pressure in my head on my eyes is much better today.
This is just my experience. It may not be the same for everyone else.
If you're worried about it but you KNOW that you're not allergic to bee stings, I think it would be worthwhile to get a tube and try just a little and see what happens. In fact, you SHOULD only start with a SMALL amount just to see how you tolerate it. If your bacteria load is larger, you may have a much stronger herx to it than I've had.
I've mostly been treating for Babesia recently, so who knows, maybe it's effective against the co-infections as well.
All I can say is that it's working for me.
Patti
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by laura j: [QB] THANK YOU Tutu! I needed it spelled out for me. That post had the exact info I was looking for.
I was wondering about a couple of things though. It said to use flaxseed oil. I thought a recent post said that was a big no-no for Lymie's so I gave my combo Flax, Fish and Borage Oil to my mom and bought just plain Fish oil.
It also said soy milk was ok and I thought it was bad for us also.
Yes, fish oil is a better choice. I do not drink soy milk or ingest other soy products.
Keep in mind that this ND also owns a health food store... hence the OK on store bought low carb breads.
I find it's better to eliminate all breads.
Also note that he puts "e.g." in front of the lists.... in other words, choose one item [or two] ... not all of the above.
Posted by sick (Member # 9143) on :
I get that feeling if I use Downy in my clothes. If it is scent free I am ok.
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