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Rachel--24

Omg...i Might Be On To Something

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Yup....the rash means she has been infected with Lyme and treatment with ANTIBIOTICS should not be delayed. The Dr. should never wait for a positive test result when there is a rash present and the person is in the intial stage of infection.

Most definately! My husband had Lyme last summer--with the classic bulls-eye rash, stiff neck, fatigue, etc. His doctor put him on anitbiotics immediately at that first visit. They took blood, of course, but didn't wait until the test came back. The docor said the test was not very reliable anyway.

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She has started the antibiotics so her Dr sounded as though he knew what he was doing. I was wondering if there is a special type of antibiotic for Lyme ? And how long. Is 3 weeks the norm? I was wondering if she did the Vit C and salt thing after she comes off the antibiotics - if that would help as well ? How do you know if your Dr is a good Lyme Dr or not? Sounds like you don't want to waste time by going to the wrong one.

The cake is in the oven ! Added rum to this one as the last one tasted a bit boring :lol: Then I wondered if it may not set properly ( had no flour at all) so added some gluten-free flour. I don't cook much and hate the washing up - but don't mind the special occasion cooking. From what Ursula said in another thread on aspergers ( hubbie has it) - I may have to cook for EVERY special occasion - so better get practising !

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Rachel- I think you're right, the bloating is probably food and cadida related. I'm on Grapefruit Seed Extract (GSE) right now for the candida but that's about it...later on I go on Oil or Oregano, I dont think if that will help too...and perhaps the catnip will? im not sure. But do you have any candida advice?

I did a super strict candida diet for four months. This was over a year ago....long before I got a good Dr. I was doing it on my own and I only ate some veggies (nothing starchy or sweet), egs (until I got intolerant), meat and fish. I only drank water. I didnt have any sugars at all during that time.

I felt the best while I was on the diet but I was still reacting to alot of things and the worst part was that I weighed only 94 lbs. I was already weighing that when I started the diet. I had been stuffing myself with all the "normal" foods....breads, cakes, pasta, dairy, etc.....but kept losing. I stopped losing once I got on the Candida diet but I didnt gain anything back. It sucked.

I took alot of natural anti-fungals. GSE was the strongest and I couldnt tolerate it...MAJOR die-off...but I also started with like 10 drops. :rolleyes: I now know its better to *ease* into these things and go sloooow. I also tried Diflucin and Nystatin. Oral Nystatin in powder form is probably my treatment of choice....even though it tastes like cardboard...I thinked it worked well for me. I was intolerant to most of the supplements anyway so they all kind of made me feel bad.

Getting of all supplements was actually what turned things around for me and I gained 10 lbs. right away. I havent strugled with my weight since I ditched the supplements. The bioset testing confirmed I'm reacting to all that stuff. I cant even take vitamins.

I also cant tolerate the oils or fats. Another panel I did poorly on with the BioSET testing. :(

I already knew that one for sure....I knew my body wasnt digesting fats well at all. I cant do oils, nuts, avocadoes...nothing like that. For some miraculous reason I *can* do ice cream!! I discovered this a few months ago and eat it everyday to help maintain my weight.

My Dr. isnt too thrilled about me eating ice cream and I know its not the *best* choice....but for now I dont have much else. He says eating dairy could be making my other allergies worse. All I know is that I have only a few foods to choose from that dont bother me too terribly and for some reason most of the "healthy" stuff gives me bad reactions wereas the ice cream doesnt. Its actually even "soothed" some reactions I've had to other foods!

I cant eat just *any* ice cream....its just 3 different flavors of organic ice cream that I've found I can tolerate. Everything else I react to....but its definately not *dairy* that is the issue....its the other stuff they throw in there. For a long time I thought I couldnt have dairy. I react to cheese, sour cream, cottage cheese, butter, yogurt, etc. I learned alot about food chemicals and read once that alot of times people are reacting to the chemicals (even the natural occurring ones) in the foods rather than the foods themselves. I found this to be true for me.

I *can* eat dairy...but only one type of whole milk and 3 flavors of organic ice cream. :huh:

Same with corn (probably a mold issue) ....I cant tolerate most corn but I eat one type of organic popcorn...that I pop myself. I eat it most days. :)

I cant have any brown rice cereals. I've tried the "rice and shine" one and didnt do well. I used to eat the Lundberg one all the time and felt bad until I realized it was the cereal and stopped eating it. I just dont do well with rice....I react to all the Lundberg stuff...even the organic plain rice cakes. It could be a mold issue.....or something else.

I cant have sweet potatoes or yams. I have had many unpleasant "episodes" with the sweet potatoes.....many of which are buried in this thread somewhere. :ph34r:

I dont do well with alot of veggies or fruits. I eat apples (only a few varieties) and applesuce....only one organic brand agrees with me though. I eat potatoes.....but there is one grower who's potatoes cause bad reactions for me....but I've learned how to identify which ones comes from that grower and now I dont have problems with potatoes. :)

I avoid *all* produce from that one farm.

The only meat I seem to tolerate well is beef and sometimes pork. Those actually were the only two that showed up OK on my Bioset testing too. If I dont eat the meat within a day or two...I'll react to it....I have to eat it when its fresh. It all has to do with natural chemicals in foods. :(

So basically my diet consists of apples, beef, popcorn, ice cream and potatoes. My Dr. doesnt like it but he said at least I have all the food groups. :lol:

Its only temporary until they can get me on more foods. If I stray from these 5 foods....even for "healthier" stuff....I get worse.

The last couple weeks I've added in a few things....mainly cuz of the holidays. I wouldnt normally eat pumpkin pie or anything thats not organic but it was worth it. :)

Hopefully the Bioset lady can work some miracles for me. ;)

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She has started the antibiotics so her Dr sounded as though he knew what he was doing. I was wondering if there is a special type of antibiotic for Lyme ? And how long. Is 3 weeks the norm? I was wondering if she did the Vit C and salt thing after she comes off the antibiotics - if that would help as well ? How do you know if your Dr is a good Lyme Dr or not? Sounds like you don't want to waste time by going to the wrong one.

Lyme specialists usually have their own practice so most other Dr.s arent knowledgeable about Lyme. They will do *standard* traetment and that is *it*. Standard treatment is bulls-eye rash = 21 days of antibiotics. If you still have symtpoms after that time....you're pretty much up a creek.

Insurance companies dont want to pay for more than 21 days so anything that occurs after initial infection and standard treatment becomes one of the "syndromes".....like Fibro....for which there is no cure. :blink:

Lyme Specialists (LLMD's) treat the disease as it should be treated and recognize that CFS and Fibro are almost always cases of chronic Lyme. They will prescribe antibiotics beyond 21 days. These Dr.'s are now under fire and new restrictions are being enforced to ensure Dr.'s dont treat Lyme with antibiotics beyond 21 days. Its a scary world we live in when people cant get proper treatment for a disease when there is mountains of evidence showing that 21 days barely touches Lyme once the infection settles in.

I'm mostly just stating all this for educational purposes as it mainly applies to those who *didnt* get treated early on. Your friend should be fine.....like Carla said...21 days takes care of it in more than 70% of cases. However, if she falls into the other 30% she might wanna know some of this so she doesnt end up with a Fibro daignosis down the road. ;)

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Rachel...........are you still here?

I need a link to the 4 week cycle for lyme if you have one......

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Rachel...........are you still here?

I need a link to the 4 week cycle for lyme if you have one......

Andrea....I'm here....was getting my hot ice cream. :D

I'm not sure what you mean?? :huh: What are you wanting to find out??

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Andrea....I'm here....was getting my hot ice cream. :D

I'm not sure what you mean?? :huh: What are you wanting to find out??

You've talked about a four week cycle for lyme flare ups. Do you have a link to info about that?

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You've talked about a four week cycle for lyme flare ups. Do you have a link to info about that?

Oh...let me look. :)

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Andrea...I dont know if its something I bookmarked or not....or if its something on my home computer or here?? A have a gazillion links so I'll be better off doing a search. I'll try that.

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I've come up with some info on lymenet. Didn't read the whole article to find where it is mentioned though. :)

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ok....heres one article that mentions it.

Its not the same info. I posted awhile back.

Lyme is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.

Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four week cycle of waxing and waning of symptoms, and improvement with therapy.

Just Google the words "Lyme four week cycle" or "Lyme classic four week cycle" and there's a bunch of sites that will come up.

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:)

Thanks for the replies!

My sister went to a Lyme specialist somewhere around the LA/TX border and was advised that the Western Blot from Bowen labs is the best one because they actually count numbers, or somehow tell you how bad of a problem you have. That may not be the right term, but they are able to count something. LOL (See, my son is not the only one in the family with brain fog!) :rolleyes:

We are going out to eat today with about 25 relatives today for the first time since we found out my son cant handle gluten 4 or 5 weeks ago . I'm so scared!!!!!!!

I'm going to call the restaurant this morning and see if they have a gluten free menu.

Does anyone have any experience with goat milk products? The only dairy my son eats is FRESH homemade raw goats milk yogurt and maybe once a week he has storebought cheddar cheese.

The goats are all dry now though, and kidding doesnt start for another 3 weeks (yay! Cant wait!!) so he is going to be off the yogurt as soon as what is in the fridge runs out. (Much to his dismay - when his stomach feels the worst he eats the yogurt plain to help his pain.)

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I too want to wish all my Rachelvillians the happiest of holidays, and the best of new year's. May we all come out of the various celebrations unscathed.

At least we can regroup in our cult farm and share horror stories :P

RYAN!!!! Glad to see you, happy holidays!!!

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Hi yall - I think you set a world record for the number of pages in this one topic. LOL

I've been reading the latest pages about Lyme and yall have really blown me away.

My 14 year old son has so many of these same Lyme symptoms, and he is also gluten intolerant.

In a week when our doctor comes back from vacation we are going to do a Lyme test on my son. My sister and my brother both are VERY sick with Lyme Disease, and I am sure a few more undiagnosed relatives.

We just went to a new doc today who wanted to do a CAT scan. What the heck for? How is that going to help with gluten problems? Is it just to rule out other problems? We dont have any insurance and it will be $1000. GASP! We absolutely cant afford it, and I guess I was just sitting there in shock because I should have asked him WHY. He did take some blood to check iron and gliadin levels. He sent us home with a kit to test stools for blood.

The main thing that worries me is the intense stomach pain my son deals with almost constantly. I learned yesterday that Lyme Disease can cause stomach pain and nausea... did yall know that?

ARK

Welcome ARK! I didn't know that about the stomach pain and nausea...two symptoms I've had plenty of in the last few years. I can't imagine what the CAT scan is for....I've had three or four CT scans (is that the same??) for sinuses...they must be looking for something else cuz the scan would not show any damage from gluten. I'm glad you're going to have your son tested for Lyme!

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I may have to scope out all the other Whole Foods in my area. <_<

Okay, but wait to scope out *mine* until after tomorrow morning, lol! :lol::ph34r::lol:

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I am able to handle certain fats I try to make it a point of getting these ones in where ever I can- olive oil, salmon, some seeds( pumpkin, sunflower) With the seeds I roast them myself to clean bacteria and then make them with vegees and oil into a paste (If there not pureed though they are to hard to digest- same with alot of vegees) . I can;t do beef either and most meats if not all I can;t do. Certain fishes I can handle and certain amounts of chicken( which is good becasue for a while I coulden't do this) I eat 3 main meals and 2- 3 small meals. Everything needs to be cooked prety much- especially veggees raw for me is a big no no. Even though I have candida issues I eat some carbs becasue I am so under weight and me and my doc both agree that anything I can get in me that does not cause a really obvious reaction I have to eat. Most of my foods I cannot take with me so yes I eat mostly inside. I never eat out either. I totally get what you mean about your schedule saving you but also drives you crazy. I hate that eating runs my life but at least by having this schedule I am controlling something.

What do you eat?

What is your schedule like?

Miamia

It's great that you can do fats! It sounds like you have a routine down that's getting you all the nutrients you need. That's awesome (even though it's torture...). I eat about 8 times a day, spaced out through the day but then really close together during the night to fit it all in, which makes things extremely uncomfortable. I eat hot brown rice cereal, TONS of fruit, tons of beans, tons of vegetables, tons of chicken, a sweet potato, millet bread, *sometimes* yogurt if i've had BioSET recently to clear it, and that's about it....oh, sometimes I can tolerate soy products as well, but the wheat free Tamari didn't go over so well last night. I know all those carbs are TERRIBLE for my candida, but I don't know what else to do. It's like I'm stuck between a rock and a hard place. Fats or carbs? Both bother me, so I chose carbs because to be honest...I think I'm afraid of fats. I'm scared of having a reaction to them, but I'm also scared if that's all i eat...what kind of weight I might put on with them. I'm scared I'll pack all the weight onto my stomach.

So everyone else who has lyme here...you all have weight troubles too, right? For some reason i CANT gain weight in my arms and legs...especially not my arms. Does anyone else have this problem? Do you think it's the babesia?

I was also wondering if anyone has come across any information about what NOT eating fats can do to your body. Since you're all expert researchers (lol), maybe you've seen some info on it? I've only found a tiny bit about what happens when you eat the good fats...but I haven't found much useful info. I haven't gotten the whole researching thing down yet...

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Welcome ARK! I didn't know that about the stomach pain and nausea...two symptoms I've had plenty of in the last few years. I can't imagine what the CAT scan is for....I've had three or four CT scans (is that the same??) for sinuses...they must be looking for something else cuz the scan would not show any damage from gluten. I'm glad you're going to have your son tested for Lyme!

As far as I know, a CT scan is the same as a CAT scan. We have decided that we are going to hold off on that until we get some other test results back. (Food allergies, gliadin, iron, and I cant remember what the one is called that tests for blood in the stool.)

I feel STRONGLY about the Lyme test being necessary ASAP, and we are blessed with a doctor friend who will do ANY test I request.

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Okay, but wait to scope out *mine* until after tomorrow morning, lol! :lol::ph34r::lol:

:lol::lol::lol:

I feel STRONGLY about the Lyme test being necessary ASAP, and we are blessed with a doctor friend who will do ANY test I request.

I'm so glad you have someone willing to work with you for testing.

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So everyone else who has lyme here...you all have weight troubles too, right? For some reason i CANT gain weight in my arms and legs...especially not my arms. Does anyone else have this problem? Do you think it's the babesia?

It's a constant chore to keep the weight on. I'm not currently underweight, but I eat a lot, not as many times per day as you, but a lot and often. My kids tease me about being a hobbit. It's easier for me because I do not have candida right now and I do not have many food sensitivities. When I was on the anti-candida/very restricted carb diet, I drank breve lattes daily made with half-n-half ... they're very high calorie/high fat.

I lift weights, no matter how bad I feel. I lift in the weight room, not the machines. I've read books and had someone teach me how to use the equipment. I've always felt like the weightlifting has been a HUGE help with this. It even prevented me from looking sickly when I got to my lowest weight.

I've also read that it's essential to getting better. I printed out the Burrascano protocol for Lyme treatment and diagnosis, and he mentions that it's essential as it heats up the muscles. Lyme doesn't like heat. He says no cardio until your stamina returns, so it's just strength training and stretching.

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So everyone else who has lyme here...you all have weight troubles too, right? For some reason i CANT gain weight in my arms and legs...especially not my arms. Does anyone else have this problem? Do you think it's the babesia?

I'm definately no expert on this and I dont know if the Babesia could be causing this or not. :unsure:

I used to have the same problem with only gaining weight in my stomach and the rest of me still being skinny....whatever I gained was either fluid retention or bloating. I would get puffy everywhere from inflammation.

Eating alot of fruit would be really bad if you have Candida. Do you get bloated or anything after eating the fruits?

I *think* bloating is a sign of either feeding the yeast or eating foods that your body is having difficulty digesting. One kind of leads to the other....if you dont digest the food well its gonna worsen the candida problem.

I used to get bloating and fluid retention everyday but for the past few months I havent. The Bioset lady was really surprised I dont get bloated from eating ice cream. I think its because I can digest it better than some of the other foods. :huh:

When I would get bloated I would get rumblings in my tummy....sometimes gas and usually constipation. I think it was because I was intolerant to those foods and had alot of problems digesting them.

For about 3 months now I've been eating those 5 foods I found not to bother me much and havent gotten bloated at all....no gas and no constipation and no fluid retention :huh:

I know none of the foods I'm eating are OK for candida diet at all but all of these symptoms improved so I stick with it. It leads me to believe most of the bloating and not gaining weight was due to poor digestion cuz I was eating stuff I was intolerant to.....rather than an issue of feeding the candida.

Some tips for improving digestion are chewing your food thoroughly.....like chew it until its liquid. My Dr. told me it will reduce the food allergies if you make the food easier to digest by chewing. I always forget to do it though. :rolleyes:

Another thing is dont drink anything with your meal....that helps too.

I think you probably arent gaining in your arms and legs because of malabsorption. That was the issue for me....when I tested through Enterolab my malabsorption score was 912.....which was almost to the point of being severe. I think if I took the test again today it might be in the normal range and my weight seems to be distributed more evenly now.

I wasnt sure if you had Celiac or not?? If you do and have damaged villi.....you should probably avoid dairy for awhile because you wont be able to digest it well due to lactose intolerance. This corrects itself when the villi heal themselves after being off gluten for awhile. The Bioset stuff wont "fix" that. If you're getting bloated and having other digestive troubles after dairy.....it could be because of that.

Dont know if this helps much.

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As far as I know, a CT scan is the same as a CAT scan. We have decided that we are going to hold off on that until we get some other test results back. (Food allergies, gliadin, iron, and I cant remember what the one is called that tests for blood in the stool.)

I feel STRONGLY about the Lyme test being necessary ASAP, and we are blessed with a doctor friend who will do ANY test I request.

Wow, it makes it sooo much better to have a great doctor/friend! I think you're wise to have the lyme testing done ASAP!

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I am just so wishing for great health and well-being to all of you/us in 2007.

Me too! :D

Susan,

Its wonderful that the holidays went so smoothly for you. :)

Sounds like you've been doing really well at work and also keeping busy outside of work. I'm happy that you had a great Xmas and well-prepared meals (by thoughtful people) that didnt get you sick. :)

Hope good things continue for you in "07. ;)

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Rachel, I'm glad to be of assurance about the BioSET! It's been working wonderfully for me...but don't worry...it will work better once your lyme is under control a little more. Treatments don't stick as well when you have infections, bacteria, parasites, etc. And the woman I go to does detox pathways as well. It sounds like we both get treated in the same way. Good luck on foods :) Foods is the best category to be treated for, it's the most fun! My only advice to you though is to wait to try out foods until you go back for another treatment to see if the treatment for foods stuck. Also, I was a little dissapointed...I was sensitive to 91 out of 100 tested foods and all of the foods couldn't fit into one treatment so I kept having to go back. But I guess what im trying to say is just take it slow!

Hi Peacenlove!

I'm the other person doing BioSET treatments right now. I'm cruising through the treatments pretty quickly. I've had about 6 treatments, and we're working on gluten right now! I only had two treatments for phenols and other stuff before going on to foods. You are right that the food clearing is the fun part! Unfortunately, I don't get a print out from my acupuncturist, but he is writing down what he is clearing. As far as I know, I don't have Lyme disease, but if I get resensitized to any foods, I'll start looking for other things going on. I worked on my bacterial overgrowth in my gut before doing BioSET.

My acu (the BioSET guy) is of the "take it slow" attitude also. He says the "BioSET people" say you can have a food as soon as you are cleared for it, but he makes me wait till the next session to confirm that it is clear. I was on a pretty fast schedule for the BioSET, but I decided to slow down. I don't want to reintroduce foods too quickly. I still can't believe that I can eat walnuts, pecans, soy, corn, and quinoa now without problems. I haven't gone back to eating these foods in the quantities I did before since I'm used to not eating them. These are the things I discovered I did miss: soy sauce - there really is no substitute when having sushi; corn chips - I did not miss corn tortillas, but a good corn chip with guacamole beats rice crackers any day! I used to eat a ton of nuts, but I'm used to not eating them now. Oh, and I can "officially" have eggs now. I guess I used to be sensitive to them, but refused to give them up because I had no noticable reaction to them. I had to give them up for a week while getting cleared for them. That was hard enough. Gluten and dairy are the next two big ones to clear. My acu thinks that dairy might be the core allergy for me.

I'm still feeling exhausted, but that might be due to other things; holiday stress; the fact that we had 2 1/2 feet of snow last week and I had to shovel it all from the driveway; or hormones out of whack. I just got back my female hormone panel. Well, my acu got it. He called to talk to me about it last night and said that my hormones are off, but that it's fixable. I knew they were off. He said that I'm ovulating, but that my peaks are off. He said it could be treated nutritionally, with herbs, or with hormones. I don't want to take any hormones because of my propensity towards uterine fibroids. One surgery this year to remove them is enough for me!!

Anyways, back to the BioSET. Donna, I can't wait to hear how your BioSET treatment goes. Good luck!

Rachel, maybe all your BioSET treatments have allowed you to eat more foods at Christmas? I didn't specifically get cleared for quinoa, but my acu said sometimes when you clear other stuff and foods, it takes care of some foods you were previously sensitive to. Plus, phenols, I guess, are in lots of foods (too hard to avoid), so YEAH for getting cleared for those!

On the topic of rice cereal, I learned to make my own, and I love it. I don't like buying stuff boxed in the store cuz who knows how old it is? To make your own rice cereal, just grind rice in a spice grinder or coffee grinder. I have a mini Cuisinart chopper that I grind my rice in. I use either brown basmati or brown jasmine rice. Sometimes, I'll soak it in water overnight before I cook it to make it more digestible. It takes about 15 minutes to cook. Just remember to stir the water and ground rice as it's beginning to boil or otherwise, it clumps.

Today is another snow day from work, so I'm catching up on this thread! We had 2.5 snow days from work last week because of the blizzard here in Colorado, but it wasn't all that relaxing because of all the shoveling and Christmas prep that needed to be done. I don't remember ever having this many snow days at work. After all the stress, Christmas turned out pretty nice. I ended up getting a little lit, but hey, it was gluten free wine :lol: !

Happy New Year everyone. I'll check in after my next BioSET appointment, which is January 5th.

Claire

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Anyways, back to the BioSET. Donna, I can't wait to hear how your BioSET treatment goes. Good luck!

I can't wait either, lol (my appointment is a day after yours). I'm excited about it and keeping an open mind about whatever it says. Happy New Year to you too!

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I forgot that I wanted to share one of the supplements that my acu put me on that is really helping my gut. Its "Probioplex Intensive Care, Bioactive Immunoglobulins & Prebiotic Factors" from Metagenics. I think that because my secretory IgA was so low, that this is helping my intestines with the extra immunoglobulins. Even though it has whey, I'm ok with it. I take it in addtion to the massive quantities of probiotics, Ultra Flora Plus DF from Metagenics (great supplement company, by the way). Any pains I was getting after the treatment for the bacterial overgrowth have been cleared up by this. Unfortunately, my husband accidentally put cheese in the pesto we made the other night, and I'm paying for it now, but not too bad. That, and I couldn't remember if I got cleared for pine nuts. So, maybe I better lay off the pine nuts until I see my acu again!

I'll have to update my signature after all the BioSET treatment is over. It's getting a bit outdated!

Claire

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