Restless Legs??? Need answers quick please!

Restless legs?? Need answers quick please! I was out last night with my friend when all of a sudden I felt like I was going to have a seizure.  I have felt this way on and off since starting the protocol so I know it's part of the cpni (besides having a hx of these sizures which i now know is Cpn related seizures). Had not had feelings of a seizure in a couple of years before CAPi protocol. Anyway, after that I realized that I felt I could not stand up. My legs were so weak and I started having the sensation that ants were crawing inside legs. Haven't had restless leg syndrome since last winter with EBVi. And it got really bad last night.

About drove me crazy last night, and I woke up to find it's still here.  I'm taking Neurontin which I thought one of the "side" symptoms it controls is restless legs. Or was it the Acyclovir I was taking last winter for EBV?? I can't remember which one helped it.

Anway, if you have ever had this you know how i feel, like I'm being totured and this is really getting to me. I thought it would pass by this morning. It has not (side note- i threw up pretty violently as well last night, not sure why). Being Sunday don't know if I should go ahead and try to get in touch with my doc.

I'm taking NACi 600mg, Doxyi 200mg, Erythromycin 250mg (Erytab-1 week). Could this be the Cpn or one of the meds? Can anyone tell me what they think is going on? What can I do to relieve these symtoms?? They are really strong. My legs are REAL weak today too, like I don't feel like I can walk and it takes effort- I've never had this before. Can anyone help?

Lynn

Comments

Hey, glad it helped Lynn.

Hey, glad it helped Lynn.    The good news is, now you know what to do when you start getting this type of reaction in the future so hopefully you'll be able to head it off at the pass with the first sign of trouble.   Or potentially taking a regular dose of these supplementsi will help prevent it from happening again in the future altogether...

Even us old "semi-pros" occasionally stumble across a problem though.     A couple of nights ago, I was in a rush for some dinner, grabbed one of those Bertolli dinner for two bags, popped it in the microwave, and woofed the whole thing down myself without worrying about the ingredients.   It was a Chicken Florentine and Farfalle< combo, very good btw, and even though I know better than pumping too much histamine into my system (spinach is full of it), it looked good, was easy, and I ate it all (and enjoyed it thoroughly too!).

Three hours later, I was bouncing off the walls, itching like crazy and generally unable to settle down and go to sleep.   I swear it made both my arms and legs kind of ache even.   After a couple of hours of tossing, turning, and shifting my aching arms and legs around trying to get comfortable, I had to take a dose of benadryl to kill off the histamine reaction.  

It did it's magic and I was able to get to sleep within 20 minutes or so (actually the benadryl knocked me out), but then of course I paid for the benadryl with another day of feeling kind of funky (my usual post-antihistamine reaction).   I'm still a little out of wack...

Of course one of my "problems" is that I'm now so much better than I was a couple of years ago that I don't really know anymore what I can and can't do.   I occasionally push the old limits and occasionally learn I can now get away with something, but I also find that I can't yet get away with some things and thus pay the price for trying.  

Anyway, hang in there.   Slow and steady as she goes with the CAPi, and hopefully you'll start noticing some real positive results soon too...

On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

I agree with Michelle, docs

I agree with Michelle, docs are so overwhelmed with patients like us with multi symptoms.  Some can be spooked.  You did the right thing reaching out as there is a plethora of back ground here to draw from.

Like you said, when you look back you had warnings.  I have come to the conclusion, regardless of the day I am going keep a vigilant watch & pop the glucose etc at different intervals during the day to ward off reactions.  An ounce of prevention is worth a pound of cure!

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Lynn, I like Michele's

Lynn, I like Michele's thoughts here.  You have multiple stealth pathogens and when they begin to die off after a period of anti-replication die off symptoms begin.   Also the added abxi that you are taking, from my perspective for the  additional infection that you note Mycoplasma Pneumoniae M.Pn.  May be dying off now, I really cannot say as I have not reseached anything about it's life cycle except to know that folks with it who mention it on this discussion forum seem to have some heavy early die-off that is often dramatically difficult to get through before the feel better.

Remember your post best day yet and cling to that experience, there will be more of them later.  The hard work has begun.

Louise 

CFSi/ME. CPni posititve, Bb positive. Started CAPi 6/24/07 Doxyi & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tinii Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Raven, Michele, Louise,

Raven, Michele, Louise, Red:

Bewteen the bath and multiple doses of magnesium/potassium I did finally get some relief. I agree with what you are suggesting, that it's probably the issue with Cpni die-off/mitochondria and Mpn die-off. Thinkng back I had been pretty tired on Saturday throughout the day, although it didn't dawn on me at the time. So it did not necessarily hit me all at once like I thought it did, i did have a little warning of feeling weak earlier in the day.

You're right about doc, it was apparent i stumped him a little as he mentioned it seemed like electrolyte/neurological issue, but he wasn't sure. I suppose that because it was getting worse very quickly I got scared so i called him. Not to say I shouldn't in the future, but i need to watch it.

Hmmm..seeing a pattern here. Looks like i need to ask you guys for help before the symptoms get out of control or feel intolerable... Embarassed Before i feel desperate for help. Oh yes, wish i had considered the stomach issues with potassium BEFORE I took so much of it, but i suppose 2 days of "loose stools" aren't much of a price to pay for the much needed immediate intervention!Wink

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, Hypothyroidism, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBVi<

NAC 600mg, Doxyi 200mg, Methyl B-12 Injections, Erythromycin 250mg

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Like Raven, I think that

Like Raven, I think that what you are experiencing is die off reactions.   Be cautious about asking your doctor for too many explanations, as you may spook him/her.   If your doctor knows enough about this protocol it may be ok but if s/he is new to it s/he may well decide this is too risky for you.  See if controlling your dosage gives you any relief if the pain and discomfort is too great and know that these symptoms will abate in time.

Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Lynne, it is quite possible

Lynne, it is quite possible that the restless leg symptoms may have something to do with the mitochondria in the leg muscle. I'm not an expert in this but my gut feeling is that if you are killing off intracellulari parasites like Cpni who feed off the mitochondria, then you have some worn out and tired little energy factories within the muscle cells. You would probably benefit from taking D-Ribose. http://www.medicalnewstoday.com/articles/37399.php< http://www.bioenergy.com/< I get it from www.iherb.com< Has really helped my energy level and overall muscle health. Raven CAPi since 8-05 for Cpn and Mycoplasma P. for MS and/or CFSi

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Hi Lynn, I'm not sure the

Hi Lynn,

I'm not sure the hydrogen peroxide will really help with this.   It was unfortunately also mentioned in the link I posted for you, and I'm sorry it was there to add to the confusion.

 I think I'd stay with the magnesium and potassium supplementsi per your doc as a quick google on restless legs and magnesium and potassium shows quite a few sites that mention they may help, and maybe take another Epsom soak later if you're still having troubles.

Hang in there.   I hope you fel better very soon!

On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Red, thank you again. I have

Red, thank you again. I have taken 4 doses now, a little relief, but still here. I think I may have enough relief (if I take another dose or 2) to sleep. I can call doc again tomorrow if I still have it.  Thanks for your well wishes.

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, Hypothyroidism, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBVi<

NAC 600mg, Doxyi 200mg, Methyl B-12 Injections, Er

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Lynn, use at least 3 cups

Lynn, use at least 3 cups of Epsom salts in a tub of hot water. Soak a long while just before you go to sleep. I think this will really help you. Magnesium soothes the nerves which are over stimulated for some reason---perhaps die off. You can also add sea salt to the Epson salts. Hope this helps, Raven CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Raven: I did use 3 cups

Raven:

I did use 3 cups just because I wanted to make sure I got enough mixed with the water. Thanks for affirming I did the right thing! Got some relief on tops of my thighs but back of thigh area, knees and calves still restless. I just took Magnesium 400mg 5 pills. Doc said try this and do it one more time in 1 hour and to add 5 potassium if magnesium alone doesn't do the trick

Thank you for explaing to me why I am having these symptoms, (I ended up paging doc after my blog) doc said he thought it was neuropathy/electrolyte issues. I'll try the tip of using sea salt with it, i have some.

Someone suggested adding hydrogen peroxide to water. It's ok to soak in this?? Thank you so much -all of you- for being avaiable to me. Not only is it frustrating and irritating and causing me anxiety, it was getting a lillte scarey feeling like it was out of control!

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, Hypothyroidism, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBVi<

NAC 600mg, Doxyi 200mg, Methyl B-12 Injections, Er

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Magnesium is on the

Magnesium is on the supplementsi list for the protocol, so yes I think that is a good idea, and an Epsom salt bath I know works wonders for some people.  

It will get better... 

Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

If restless legs is

If restless legs is something you suffered from before then it is entirely possible that the CAPi will resurect those symptoms and then some.   That's what we expect will happen when you start to kill the bacteria.   You ask whether it is the meds, the answer to that is yes and no.   Yes the action of the meds will make you feel worse in the short term, no it is unlikely that you are allergic to them.  

Until we start treating Cpni, our experience with medication is that it either makes us feel better or it does not work.   With Cpn things are different, in the beginning you are likely to feel worse but it will work.

As to what to do about it.   If it feel unbearable you will have to find a way of cutting the doses down and give yourself a little time.   If you do reduce the dosage for a week or so and then re-introduce the full dose gradually.

Lastly, bowel disease can often make your legs feel strange, certainly the crawling ants feeling is something I am familiar with which is always worse when my bowels are out of sorts.  So if your bowels are having trouble adjusting to the antibioticsi this may result in painful legs.   You may know what to do to help your bowel stabilise.  If not, then Chlorella is soothing, I also take Tanalbit, Saccharomyces boulardii and acidophilus.   But there are times when the CAP is addressing the issues in my gut, when I just have to endure the pain.

Michele (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Michele: Thank you. Yes i

Michele:

Thank you. Yes i ate a sandwich last night- a lot of hard bread- and toasted which I already suspicioned caused the vomiting.  I can watch my carb intake again for my IBD and see if that helps for legs.

I took acidopholus in the past so i will try that also. Red suggested magnesium orally and/or epsom salt bath with peroxide. Someone else suggested Valtrex whcih is the name brand of the acyclovir i mentioned that might have helped me last fall when i had EBVi. I'm going to try it all. I have to have some relief right now, it's making me crazy!

Thanks for being here, truly.

Lynn 

 

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, Hypothyroidism, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBV

NAC 600mg, Doxyi 200mg, Methyl B-12 Injections, Er

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures