still confused in south florida,

[mamakitkat]

I' m new to the site but not new to the nightmare! I've had m. for about 13 years and at about the end of the road. I've been the whole gammut. I've tried most of the meds, met most of the hateful doctors and their delightfully hateful stafs. I dont get their attitude. Even if we were all crazy (which we are not!) we would be entiteled to be treated like humans. Mabye we arent and they know it. It was brobably a big lab mistake ( like the lovebugs). They certainly are afraid of something. I really beleive that the Lord is going to heal us all one of these days and then we will understand that this has been for some purpose that we do not yet understand. Just wanted to mention that recently I tried something new that has worked better than anything so far. It is a special type of coloital Silver. You take a couple of teaspoons a day (for the inside ones) and splash on the liquid or jel on the skin. these kreapy things don't like it at all and by the way YOU CAN DEFINITELY PISS THEM OFF. SOMETIMES i THINK THEY ARE SMARTER THAN THE DOCTORS. Has any one noticed that they are like a vine and are all attached. Like a shoelace. If one pops out at the top of the leg, some times it will get loose farther down the leg. Ive been kind of nervous at checking in to the website but figured its now or never.

[Clara]

Hey there. This is my first time on this site as well. Figured it can't hurt. Yea, I'm with you 100% about the doctors around here. I just can not even begin to imagine why they are SO CRUEL to us!!! I really wonder if what I've heard is true that people who attempt to treat us have been threatened with having their license taken away from them. Otherwise, why would they treat us with such utter hatred? Heck, I went to 13 doctors - all of whom treated me like some kind of terrorist or something. Doctor #14 was Infectious Disease and I told them point blank that if they were just going to tell me to sop picking and see a psychiatrist... well, I'd save us both some time and just leave. To my surprise, they'd seen this before (the Plantation, FL office) - and sent me to Cedars Med. Ctr. head of Dermatology. they were apparently studying this crap - that was some 7 years ago. THEY biopsied me and said it came back "bug bite, unknown". They said I had a parasite but they didn't know what exactly it was so they couldn't kill it. They said they knew I wasn't crazy, but suggested I see a psychiatrist b/c living with this crap was not going to be easy. So, at my husband's request, I did. They tried me on three different anti-depressants... tho I wasn't depressed to start with. I used to weigh 134 lbs. - but gained 40 with the first anti-dep. they tried. The next month they tried a different one and I gained 30 lbs. that month. Once again they switched it up, and I gained another 30 lbs. After that - ONE HUNDRED POUNDS IN THREE MONTHS - I told them I was done!

My latest attempts to get better revolve around taking a ton of vitamins and trying to get my chronic fatigured butt out of bed to exercise. I read this stuff is stored in fat cells and that sweating it out is the only way to get it out. So I've been doing my best. I'm about to embark on internal cleansing... I think The Healing Grapevine is the best site I've found as it's written by people who have beat this crap. Where do you live? Have you found ANY doctors who are willing to help? I'm a few minutes out of Lauderdale and have had NO LUCK AT ALL. Good luck to you. Oh, have you tried far infrared sauna or heating pads? I've read that is supposed to be crucial to getting this crap out of our bodies. Write back soon. Happy Holidays!

[tcmgpt13]

Ah, the return of the ex-Staningernistas. Healing grape vine propaganda is baacccck! Look none of it cures. Most of it is over priced. We have heard it all, many times over. It all sounds just the latest version of dissing of all doctors in order to sell expensive products which can be found elsewhere for less...Not too obvious or anything, right? So much sales chatter along with a well rehearsed story. Newbie... LOL.

quote=Pattie Faulkenberry;87479]Hey there. This is my first time on this site as well. Figured it can't hurt. Yea, I'm with you 100% about the doctors around here. I just can not even begin to imagine why they are SO CRUEL to us!!! I really wonder if what I've heard is true that people who attempt to treat us have been threatened with having their license taken away from them. Otherwise, why would they treat us with such utter hatred? Heck, I went to 13 doctors - all of whom treated me like some kind of terrorist or something. Doctor #14 was Infectious Disease and I told them point blank that if they were just going to tell me to sop picking and see a psychiatrist... well, I'd save us both some time and just leave. To my surprise, they'd seen this before (the Plantation, FL office) - and sent me to Cedars Med. Ctr. head of Dermatology. they were apparently studying this crap - that was some 7 years ago. THEY biopsied me and said it came back bug bite, unknown. They said I had a parasite but they didn't know what exactly it was so they couldn't kill it. They said they knew I wasn't crazy, but suggested I see a psychiatrist b/c living with this crap was not going to be easy. So, at my husband's request, I did. They tried me on three different anti-depressants... tho I wasn't depressed to start with. I used to weigh 134 lbs. - but gained 40 with the first anti-dep. they tried. The next month they tried a different one and I gained 30 lbs. that month. Once again they switched it up, and I gained another 30 lbs. After that - ONE HUNDRED POUNDS IN THREE MONTHS - I told them I was done!

My latest attempts to get better revolve around taking a ton of vitamins and trying to get my chronic fatigured butt out of bed to exercise. I read this stuff is stored in fat cells and that sweating it out is the only way to get it out. So I've been doing my best. I'm about to embark on internal cleansing... I think The Healing Grapevine is the best site I've found as it's written by people who have beat this crap. Where do you live? Have you found ANY doctors who are willing to help? I'm a few minutes out of Lauderdale and have had NO LUCK AT ALL. Good luck to you. Oh, have you tried far infrared sauna or heating pads? I've read that is supposed to be crucial to getting this crap out of our bodies. Write back soon. Happy Holidays!/quote]

[Clara]

Yea, I noticed they were trying to sell their stuff - so I purposefully DIDN'T buy any of it. I've had this some 7 years and am so totally through with the doctors around here. I also just quit looking it up online b/c I was so sick of reading how we were all crazy. So I just recently got back on to see if there'd been any breakthroughs that the govt. would allow us sufferers to be privy to... no such luck!

In the opinion of those with a LOT more knowledge than I've obtained... is there ANYTHING that helps with the rediculous light sensitivity, constant migraines, digestive issues and DEBILITATING FATIGUE?

[scabdraggr]

I suggest that you read the vet meds thread and thje fenbendazole threads after that as it with praziquantel will do much good and is as close to being a cure as anything out there.It has worked for many and has not hurt anyone although caution is recommended if you have pre existing issues such as heart disease.

[tcmgpt13]

Uh, you were extolling all the S products in your prior post on this thread. And you were promoting them and her now rival website by talking about that as well. Wow, quite a change in story telling here. Why bring it up that site and what they sell at all? Strange...but maybe not? Hmm.

What helped my light sensitivity and headaches was treating the herpes viral reactivated infections with acyclovir. That also dried up all the lesions which were viral lesions (not all cleared with this drug, just those which were caused by the viral infections). My digestive issues are better with doxycycline (cleared the heartburn and stomach pain I had for over two years, not originally prescribed for that and in fact this drug often causes those symptoms in some folks, but for me it was just the opposite). Also two TCM formulas I have used for the large and small intestines helped these issues. I noticed a definite and sudden elevation in energy from using the doxy. I went to doctors to obtain some drugs and also to find out what infections I had (besides any that could be M related).

I have never been treated with anything but courtesy by doctors, but I never tell doctors more than they want to hear which is my symptoms. I think it is important to be tested for suspected known infections which can be then be treated. Never insist there is a disease called M and you will be far less likely to encounter labels you do not want to see on your chart. When infections are identified either drugs or herbs can be used to more accurately target known infections. M infection and symptom pictures seem to differ from person to person, though a good lyme panel is one commonly suggested panel for those who have M symptoms.

quote=Pattie Faulkenberry;87519]Yea, I noticed they were trying to sell their stuff - so I purposefully DIDN'T buy any of it. I've had this some 7 years and am so totally through with the doctors around here. I also just quit looking it up online b/c I was so sick of reading how we were all crazy. So I just recently got back on to see if there'd been any breakthroughs that the govt. would allow us sufferers to be privy to... no such luck!

In the opinion of those with a LOT more knowledge than I've obtained... is there ANYTHING that helps with the rediculous light sensitivity, constant migraines, digestive issues and DEBILITATING FATIGUE?[/quote]

[Clara]

Thanks for all the info. I'll get some tests done soon.

Also, I fully agree that people shouldn't mention the "M" word. I had never even heard of the big "M" when I contracted it. Doctor # 14, Infectious Disease, sent me to doctor number 15 who did a biopsy and told me I had a parasite but they couldn't kill it or name it- and he suggested I see a psychiatrist b/c people with this have a hard time living with the fact that we are infected w/something we can't kill. Meantime, he put me on Orap.

The Psych. I saw suggested I find support via the web, and she's the one who told me the name of this disease. I'm a dinosaur w/regard to computers and had never surfed the web in my life. The Psych. had two other patients with this, one a nurse and one an attorney. She insisted I try different anti-depressants, even tho I was not depressed. I got off orap and tried three different ones for a month each. I gained 40 lbs. the first month, 30 the second and 30 the third. After gaining a whopping ONE HUNDRED LBS. in THREE MONTHS, I quit all the drugs... and I was left MIGHTY Depressed from the whole experience! At 220 lbs, I wonder if I'll ever see 134 again?!

With horrendous chronic fatigue, light sensitivity and daily migraines - I just figured I was going to slowly die from this. I'm glad I finally got back online to find this site - it's great to have hope!

Thanks everyone!