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S.O.S. - Such Overwhelming Swelling

Submitted by Kimscupoftea on Sun, 2009-04-19 20:00.

Pulse 15 has come and gone.  But before that in March we took a family trip to Orlando and the highlight was …… Walking the waters edge at Cocoa Beach.  It’s been 6 years since I’ve walked on the beach like that without falling down.  No cane, didn’t hold onto Ken, just walked on the beach.  The complexity with this is, 1) the slope of the beach and 2) the ebb and flow of the water that causes inconsistent footing.  I was happy to have the sun on my face.  Comforted by the sun’s rays giving a visual sense of a milestone achieved, cheered on by the roar of the waves crashing the shore.  The fans went wild!

 

So that Flagyli stuff, yuck.  But if you eat butterscotch pudding while you’re swallowing the Flagyl, you got yourself a great excuse to chow down on butterscotch pudding.  It works, seriously, try it.

 

This brings me back to the S.O.S.  Since the last day of pulse 15 (April 7th) I’ve been physically and mentally tired.  Memory difficulty.  Enhanced by swelling, like more so than the vienna sausage toes, but to include my ankles and even my neck.  Ken says its die-off.  I ask him if he’s sure.  Then he says its die-off.  Then I have trouble with walking.  Then he says its die-off.  I say, it’s been nearly two freaking weeks since I ended the pulse.  He says its die-off and take two Ibuprofens.  Dang, the Ibuprofen helped, but I’m not telling him.  I’m still a bit wobbly and my shoes don’t fit.  Any advice before Ken tells me its die-off again?

 

Did I mention my monthly cycle is off the chart too? I don’t know what is going on but 2 full length periods in 3 weeks is crazy! I’m thinking I should buy stock in the Always corp.  My Obgyn doc has already taken a uterine biopsy and all is normal. Maybe its just menopause at 41.      Any advice would be greatly appreciated.  Kim Yell

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RRMSii since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagyli Copaxone, Avonex, Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wa

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Hey Kim, loved the beach

Submitted by raven on Sun, 2009-04-19 22:43.

Hey Kim, loved the beach scene.

The swelling is probably inflammationi from--yea, Ken is right--die off. Happened to me first and second years from time to time in my right hand. Most noticible in the mornings. drinking a lot of water seemed to help. I also felt better when I was more hydrated.

As for the menstrual problems, I had to have a hysterectomy at 36 because my uterus was swollen up like a balloon. I'm convinced it was infected with Cpni because every time I had my period, I would have endotoxini-like reactions--chills, intense intestinal distress, headaches, etc. So maybe dieoff is causing the cells to self destruct. (IMHOi, I think Cpn loves those blood-rich cells in the womb.)

Hang in there,

Raven

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Feeling 95% well-going for 100. Still testing + for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.for MSi and/or CFSi. Also EBVi and HHV6. Amoxy,Doxyi, Azith, Tinii pulses. NACi, BHRT, MethyB12 injections

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Kim, many more women on

Submitted by Sarah on Mon, 2009-04-20 08:22.
Kim, many more women on this site seem to have menstrual problems of the sort you describe than is usual.  I had a hysterectomy at 43 after years of uncontrolled bleeding so I lasted a few more years than Raven! 
  
I tend to agree with Ken and Raven about the swelling, especially since you never experienced any overt trouble before stating CAPi.  If you hadn't started, you would probably have ended up like Raven and me..............Sarah  

An Itinerary in Light and Shadow

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

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Hi Kim, I love your blog

Submitted by Minai on Mon, 2009-04-20 10:40.
Hi Kim, I love your blog and all of your analogies :-) I hope that Ken and the others are right, that it is die off. Have and suffered from the same (swelling was very severe), I highly recommend that you report your symptoms to Dr.Sriram and ask him the same questions. Then, let us know what he says. The swelling is indeed, quite scary. And having frequent menstrual cycles, especially if it's never happened to one before, is quite concerning. Glad to know that everything checked out normal for you with your GYN. I'm just of the opinion that Dr. Sriram needs to verify the opinions of Ken and others. And, he needs to know that you are suffering from such symptoms. - -Minai RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. Housebound with Neuropathy and increased spasticity and weakness since 6/08. Stopped CAPi and LDN 3/09. USA
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Kim, I agree with Minai

Submitted by Louise on Mon, 2009-04-20 11:46.

Kim, I agree with Minai that to report the sudden swelling to Dr. S is a good idea.   And once he has made suggestions about causation and perhaps something to resolve it then you might also ask him if TED type stockings might be helpful in preventing it in the future.  No harm is asking his opinion.

You need to follow the instructions for putting them on correctly in the morning before you legs are put down on the floor.    He may not want you to use them but they can help fluid from pooling in the feet and lower legs.

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

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Kim, I had to have a

Submitted by Janice C on Mon, 2009-04-20 12:12.
Kim, I had to have a hysterctomy when I was 28. I am sure cpni loved all those blood vessels.

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minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, Lauricidin: muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (all well now)

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Kim, Louise has provided

Submitted by Minai on Mon, 2009-04-20 13:12.

Kim, Louise has provided good suggestion. I initially used TED hose, too. One of your doctors could even write a script for them, so they would be covered by insurance. But when the heavy compression eventually became too much for me, as the swelling went down, I started wearing these: LINK They don't cost very much and you can buy them at such places as Rite Aid. Or, just order them online. The only problem I had found with them is that the cushiness/massage construction on the soles, sometimes triggered spasticity for me.

 

 

Yes, the edema and menstrual problems (3 cycles in one month, but still have mennoraghia) did eventually go. But I still have no absolute answers as to why they were even occurring. Hopefully, Dr.Sriram can provide you with some.

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Thanks ladies for all the

Submitted by Kimscupoftea on Mon, 2009-04-20 13:47.
Thanks ladies for all the obg words of wisdom. It's very comforting to know you girls are just a click away!Wink   Besides, a hysterectomy should be a piece of cake compared to what we already go thru, right?! 

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RRMSi since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagyli Copaxone, Avonex, Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wa

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Probably, yes, but I

Submitted by Sarah on Thu, 2009-04-23 07:49.
Probably, yes, but I surmise that it would not be necessary had I already started CAPi, which is why  think Ken was right.  All the swelling went after the op, but it came back for a while like yours, but about ten months after starting abxi and roamed around a bit.  Now my legs and feet are back to what they were like when I was eighteen, I just can't wear awfully high heels, but they probably aren't good for you anyway!............Sarah  

An Itinerary in Light and Shadow

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

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KimI sent you a pmLori 

Submitted by loriyas on Tue, 2009-04-21 08:54.

Kim

I sent you a pm

Lori 

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Started Vanderbilt protocoli 1/9/08  Rifampin twice a day, azithromycin MWF, Tindamax for 7 days out of a month at 250 mg three times a day,  b12 injection monthly NACi daily, DHA, calcium pyruvate, prilosec, low dose naltrexone 4.5 mg

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It is so wonderful you were

Submitted by ruthless1 on Fri, 2009-04-24 00:28.

It is so wonderful you were able to walk the beach Kim & Ken & Fans!!! weeeeeeeeeeeeeeeeee  +oP

You have some excellent advice about the swelling.  If you are taking copius amounts of "moppers" on a regular basis & a new sxi crops up, best to get an opinion about it.

Keep up the good work!!!

peace

r

 

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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<

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Ken says it's die off. 

Submitted by notasperfectasyou on Mon, 2009-04-27 17:23.

Ken says it's die off.  The problem is ..... I'm not taking the ABXi and it's way better to hear it from someone who is.  Makes total sense to me.  Hey Sweetie!  You're special even with die-off!  Ken

ps - Ken still thinks it's die off. Smile

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In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

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