Sick New Member With Lots of Questions!

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Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/12/2010 9:19 AM (GMT -6)   
I am thrilled to have found this website.  The posts and the threads have been invaluable to me the last couple of weeks... Decided to join to maybe get and give some kind of support.  Please forgive the length of the e-mail and the fact that it may not make much sense.
 
I am on the fourth day of the third cycle of treatment and while I'm not as sick as the first round, I'm still pretty well under the bed today. Am doing a combination of Cipro and Amoxicillin.  I have a Dr. appt. this afternoon.
 
Biggest problem right now is no insurance, but I see that as forcing me to be creative and not depend so much on one doctor for all my answers.  We do have stores that provide certain free antibiotics to folks with no insurance.  Right now that's good. 
 
I have read about all the supplements many of you take and am wondering if anybody has drastically changed their diets?  When I started on the antibiotics, I immediately went on an anti-candida diet and probably 99% compliant.  My opinion is about the 4th day I was on the diet, I experienced yeast die-off as well as all the other die-off.  I really thought I was going to die along with the yeast!  I am also wondering if by watching my diet if I would get by with fewer supplements?
 
Every few days I have extreme symptoms of nausea, fatigue, shaking, (ok, flu-like symptoms) and a taste in my mouth of "metal" combined with just a bad taste.  Does anybody know if this is die-off and maybe the bacteria release metal as they die?  Or is this just a side effect of the meds?
 
I am not new to illness...just new to this particular treatment.  My problems started 40 years ago (geesh...I can't believe I've been sick that long....) when I had my mouth completely restored with....yep....amalgam fillings.  I live in SW PA and we're probably 20 years behind the times here... So in the mid-90's I had all those fillings replaced with composites (this was after breast cancer in 1990).  I went thru several treatments for metals (EDTA/DMSA/DMPS) and couldn't figure out why I wasn't any better.  It has been mainly through my own research that I have come this far.  I have spent tens of thousands of dollars on doctors and treatments for about everything under the sun except Lyme.  Amazing.....And I thought I had decent doctors!  I am extremely fortunate that my symptoms are mostly CNS and don't particularly have the joint problems, but I still am not able to work because of fatigue, dizziness, and anxiety/panic.  I am assuming it will take another 20 years to track down the cause of all that.
 
So again, thank you for all your posts.  I would love any kind of survival advice.  Have noted about the epsom salts/peroxide baths.  I also use a 9-v Hulda Clark "zapper" almost every day and a rebounder when I feel like getting on it.  I try to do light to moderate exercise outside so I can combine moving with sweating...that's when I can stand up without feeling like I'm going to fall over. 
 
The very best to all who reads this!!
 
 
 
 

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35740
   Posted 8/12/2010 3:47 PM (GMT -6)   
Hi Mamyou,
Welcome to our forum!!! I am very sorry that you have a need to be here, but I'm glad you found us!! I'm sure you will find people here to be compassionate and helpful, with a lot of different points of view.

There are quite a few people here that are on what is known as a "Lyme Diet", although I am not one that follows it.

My biggest suggestion would have been for you to start the detox baths & foot baths, but I saw that you have already found it! I would suggest though that you be sure to start slowly. When I first started detoxing, I would end up with a migraine each time. It was because I was so very full of toxins & my body didn't think it was a fun thing to do at first, but now I detox 2 - 3 times a week with no problems.

I do want to express my sympathy for you having to go through breast cancer.

I look forward to reading more of your posts.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 8/12/2010 4:10 PM (GMT -6)   
Hi Mamyou,

Welcome to the Lyme forum, I hope that we can be of assistance. When I first got sick, I took Cipro and got the metal taste in my mouth that you describe. I haven't noticed this with any of the other antibiotics that I have been taking recently. My LLMD has me following a Lyme diet that consists of no sugar and very low carbohydrates and no alcohol. It took me a while to adjust to it, but now I am used to it and have actually lost 12 pounds in the past six weeks. If you are taking antibiotics, it is important to include probiotics to replace the flora in your intestinal tract. I also take all my meds with food to avoid stomach problems. Have you been sick with Lyme for a while or is this a recent infection?

Hope you feel better soon.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.
 
 

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/12/2010 4:42 PM (GMT -6)   
Traveler and betterhealth (and everyone else) 
 
Well, guess there is good news and bad news.  The good news is that my lyme test is positive.  The bad news is that my lyme test is positive.  Maybe I should explain.  To answer the question:  I believe I have been sick my entire life since I was born to a mother with cancer.  Exactly when I acquired the bacteria is anybody's guess but at the age of 18 and the placing of a mouthful (literally) of amalgam fillings plus a root canal, my health truly hit the skids.  It's now a question of which came first, the chicken or the egg.... did I get lyme because of the burden of mercury on my body or did the mercury tip the iceberg on a body that was riddled with lyme???  It has been a horrible almost-40 years trying to find answers for a body that always felt like it had the flu.  I'm not absolutely convinced that this isn't worse than breast cancer and chemo!!
 
The Cipro may be the culprit in the metal taste....
 
The anti-candida diet sounds a lot like the lyme diet but will have to research.  I am not eating sugar, white flour or anything with simple carbs.  The staples of my diet right now are organic boiled eggs, hummus, garden fare of green beans, tomatoes and cukes, and meat.  I am also doing the acidolophus plus other things that I'm not even sure what I'm swallowing most of the time!
 
Thank you for your warm welcome.  You all have already taught me a lot and I look forward to more interaction.  I will be reading a lot because I am the first patient my doctor has treated.  He would diagnose but would then ship his patients to another doctor. I feel honored to be his guinea pig at this point, and he does seem truly excited.  I will be on here reading lots of threads.  Again...thanks. 
 
 
 
 
 
 
 
 
 
 
 

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35740
   Posted 8/13/2010 12:43 PM (GMT -6)   
Hi Mamyou!
You are right about the positive results from your LD tests - it's truly a double-edged sword!! The good news is that you now know what you are ill with! Hopefully you can get some good treatment now!

I also was the guinea pig & educator of my gp. I think this is the only way some of the people in my immediate area will ever get ANY real treatment that can help them. At least we may have a few less people who will have to live with chronic tick-born illnesses.

I would like to suggest that you print out Burrasconos' Advanced Topics of Lyme Disease. Here is a link to it. It is listed under this title;

Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
by Joseph J. Burrascano Jr, MD

at this addy; www.ilads.org/lyme_disease/treatment_guidelines.html

There are a handful of us here that believe we have been infected a good portion of their lives. I believe I was infected with RMSF at the age of 5, that's over 40 years ago for me. I only had bouts of illnesses until about 1988, when I got pretty ill (was bedridden for several months), but kind of bounced back, and then almost 11 years ago, I went downhill again & this time have not been able to recover like before. As is fairly typical for chronic LD, other systems have now been compromised, I had to have a hysto. back in 87, and I no linger have a gall bladder or appendix. I also have a whole list of other things that are having to be treated -again, like many others here- like Hashimotos' Thyroiditis, serious IBSC, Chronic acute EBV, diverticulosis, and some pretty serious adrenal exhaustion to name a few.

Do you detox? It is incredibly important for us "Lymies" to help our bodies detox. It's as simple as dry-skin brushing & taking detox baths &/or detox foot bathes - with a full detox bath being the better. You may need to start slow - when I first started using detox bathes I kept getting migraines, but with the help I found here on HW, I learned to start off more slowly & work up to the full 30 minutes in the tub & to detox bathes 2 or 3 times a week.

You will read that a lot of us want to ask the question - which came first - about the viruses & other conditions we carry. I don't believe that for those of us who have been ill for a big portion of our lives, we can know whether it was tick-borne infections(TBI's) came first or the other things (viruses, conditions) had a good foothold before we were infected by TBI's.

While on these higher doses of abx for such a long time, you really need to be getting really good probiotics into you. I use Kefir - a more well rounded probiotic that usually is less costly than the really good acidolphilus ( or however it's spelled! eyes) that can be purchased in health food stores. I live in the lower midwest (or the upper south - which ever way one wants to view it!) and can find kefir in some of the 'nicer' grocery stores. If your grocery store has a health food section, I would start by looking there.

Oh!, and there are on line courses that a gp can take to educate themselves, should they be interested in taking things that far.

I hope this helps some!! smilewinkgrin And may you find peace along your journey to health.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/13/2010 1:02 PM (GMT -6)   
Trav:
How do you take your kefir? I looked it up and found it as a smootie, also. Is it pills, powder, liquid? What should I look for?
Also, I did see that " there are on line courses that a gp can take to educate themselves, should they be interested in taking things that far" but I don't remember where. If you have a link for it, please let me know. i would like to give it to my PCP.

MAMyou:
Welcome! I took Cipro about 15 yrs ago, but I don't remember any metal taste, so I can't help you there.

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/14/2010 8:15 AM (GMT -6)   
I finally found plain kefir in a grocery store about 20 miles away. Make sure it's PLAIN. My local grocery carries it in flavors which has SUGAR. This comes in a quart bottle in the dairy aisle. I read somewhere that 2 to 4 ozs a day is helpful, but I would assume that's with a mix of other probiotics as well.... I do 3 or 4 different kind. Kefir has the taste of a stronger acidolophus because it is a different strain of bacteria. I've never seen kefir pills but that's not saying they don't exist.

Gosh, Simela, I hope I'm not still taking all these abx in fifteen years from now... It has taken me nearly 40 to get this far!!!!!!!

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/14/2010 12:39 PM (GMT -6)   
Mamyou:
I don't know what I had 15 yrs ago and if it was related to LD. I got really sick and I could not swallow anything, not even a few drops of water. My throat was almost completely closed up. I have never been that sick again, not even now. I took Cipro for 3 weeks and I completely recovered. I could not walk for several days, the sole of my feet were very swollen, it appeared I had some liquid under the skin. I couldn't stay awake. I had vision problems. I made my own funeral arrangements and passed them to my fiancee, now my husband. I was in my late 20's and as I recovered, I didn't pay attention to what followed and I don't know to this day if it was LD, as I never tested for it, until last year (2009) in spring. Christmas eve (2008) I started to have pains all over, so severe that I could not even lay down to sleep--any contact including the bed made the pain worse. I took some tylenol and the next few days I was fine, so I didn't think anything of it--I thought it might have been flu or a cold. Then I started to have serious pains in my hands and feet, especially. I would not say it was like rheumatory artherites, although I don't have that, but it felt more like someone was pinching my nurves. It wasn't exactly in the joints. Then my fingers and toes started to curl up (very painful). I could no longer knit or cut my kid's hair, Sometimes I could not open the door or cut fine herbes (parsley). Aweful cramps mostly (but not only) in my hands and feet that were coming and going and numb feet and legs..

A few times I got up from my chair and I could not walk, my feet were so numb that I could not move them, I had to use my hands to walk against tables, walls, etc

So I told my doc (PCP) and he orderend the WB and Elisa and I was + for lyme; he never tested for co-infections. I was treated for 3 wks. in Feb 2009. I was fine until May 2010. Then I had a car accident and pretty soon all the symptoms came back and then some! I wonder if the amish would have kefir?

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/14/2010 12:46 PM (GMT -6)   
Trav:
I am really out of it today, I think you sent me an email and I can't find it.  I don't remember deleting it.  I even thought I answered it, but then when I checked it seems like I sent the text to one of the lyme disease sites that had emailed me.  I need more sleep, baby is sleeping so I am going to take a nap.  That will clear my mind...  I am pretty sure that you emailed me once yesterday and once today???  I don't know!  I made coffee today (I cut back and drink it every other day now) and I poored the water in, then put the coffee in, then I poored more water in;  the result: Diluted coffee on my floors and kitchen cabinets.  Husband looks at me like I had lost my mind.  Not very supportive when I goof off!  Still in denial that I am sick!  I am going through the hardest time of my life and it is only getting worse, I try to stay + and hoping for the best.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35740
   Posted 8/14/2010 6:24 PM (GMT -6)   
Hang in there Simela!!! WE are here for you to let off a little steam, or to give comfort!!!
I did email you twice!!! But no problem!! I will just send them again! Believe me(!!!!!!!) I truly understand what you are going through!!! And I don't mind helping where I can!

I hope you feel better tomorrow.
(((((((hugs)))))))
Now see??? Don't you just feel better after a little hug?? - giggle!!
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/14/2010 8:38 PM (GMT -6)   
Simela... After reading your response a few posts back, I should be grateful I'm no worse than I am. I can see this is a great support system.

The kefir I bought in the grocery store is Lifeway, Real Lowfat Kefir Cultured Milk Probiotic, Plain/Unsweetened. Looks like Lifeway Foods is in IL. Anyway, I would think any health food store would have it or know where to get it. The bigger groceries with a health food section should have it. Just stay away from the flavored stuff. Don't know about the Amish stores. Now that I think about it, one time, long ago(!) I think I saw a Kefir powdered culture mix in a health food store that you could make your own kefir. If anybody has made their own yogourt, it would probably be the same principle. I have no idea where I was living at the time I saw it!!!

All the best to everybody...

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/15/2010 3:47 AM (GMT -6)   
Mamyou:
I have been healthy for months at the time, in between with no symptoms on and off. I am also glad I am not in worse shape than I am. I went in the woods lots of times, so it is impossible to point exactly when I got this!

I am really glad I found this forum because I really need the support. I've always been strong, but this disease is bringing me down, mainly because I have 3 children (6, 5 and 9 mo) and I worry I won't be able to take care of them if I get worse+I don't want them to see me getting worse... Trying to stay +

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/15/2010 3:55 AM (GMT -6)   
Trav:
Thanks for the hug--it put a smile on my face. Thanks for your kind words! I think I have so much steam in me I can ran a train LOL
I am going out today, just to get out of the house, by myself. I like to shop for my children and I need a few things for when they start school, so I am looking forward to that.
I think you sent me a link to the yahoo group before, I don't see it in the last email. I tried to google it but I can't find it. When you get a chance maybe you can re-send it?
Thanks for making me feel better. I would be so isolated without this forum!

BTW, I am upset with my husband because he is not waking me up for my medication! I tend to sleep over 8 hours lately, and all I asked of him was to wake me up. He is still not doing it. I would think that at least for his daughter he will try to help me, so that we both get well. I ordered the Igenex kit for both of us, so I am waiting to get them and take it from there. I am so terrified I have infected my little girl!

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/15/2010 6:55 AM (GMT -6)   
Simela... Good luck on the shopping trip. I can't imagine trying to keep up with three children right now. If your husband won't wake you up for meds then you may have to set an alarm. He may or may not get the hint...if he does, good; if not, you're covered anyway. I'm sure we'll all be waiting to hear the Igenex results.

Like you, I was reasonably healthy for months at a time then it would seem a stressful time would hit and I would go downhill. This last hit was a doozey and so was my downhill. The upside of this one is that I am now diagnosed and in treatment. Since I grew up on a farm, I've been bitten by more ticks than most dogs....but at this point I guess it doesn't matter "when" as much as "I have to get well"!!

Have a great time today..... And thanks for the posts.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/15/2010 7:26 AM (GMT -6)   
Mamyou:

He said he did set the alarm, but as I said, I can't hear anything when I am asleep--it's like I am in a coma. I wasn't like that before. He was up at 11 pm watching a movie and he did not wake me. Then last night, the same thing happen. I did not hear the alarm and I woke up at 2:30 am (when baby woke me up), instead of 11. Not happy with him right now! It is so imp to take this med on time, and he finds the TV more imp than the abx. We exchanged a few words, not happy ones. I feel that he should at least think at the baby and try to do this for her, if not me...

Anyway, I have a new phone, way to fancy for me, and I did not have the patience to figure out how to set the alarm. He set the alarm. I did not hear it. It is definately lauder than the baby. Weather the alarm did not work, or my ears are programmed just to hear the baby and nothing else, I don't know...
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