post-lyme disease also known as chronic lymes disease.

[lindalu]

I am already on an IV drug that costs $10,000 every 2 weeks and I have to drive 3 hours each way to see my doctor. I think it si ridiculous that it costs that much. However, because what I have is rare, the drug company got orphan drug status and carte-blanche to charge whatever they want. Plus, they require that I have yearly MRI"S, ekg's, eye evals, boo-koo bloodwork, etc.
You got a good deal on your drugs. Hospitals charge 3 times the going rate a lot of times. So, if you had been getting your infusions at the hospital-- whew!
Guess I won't be going to Dr Schwart!!!!
At least if I was on IV drugs, no need for a port or all of the supplies, already have th e supplies and a port!!!!
I found a doctor in Rock Island IL who treats lyme and takes insurance and also believes in long term therapy. He wants to send another test to Igenex after I have had no antibiotics in my system for a month. He is fearful to put me on anti-biotics because of the high probability of a c diff recurrence with anti-biotics.
So, here I sit just wanting to have a life again watching another summer pass by.
Safrey- sure wish i could help you- you have worked hard on this and I am sending you something by PM that I found regarding our bodies and malaria.. My neighbor seemed more than willing to help, but he needed more info and was more than willing to look at specimens as long as they were sent promptly and kept cool? (I think).
Linda

[ladycolorado]

thanks lindalu, yeah really did get good deal i think, considering. safrey pease keep up the good work you are doing, i do think good work. although our opinions may differ i am not closed to your research. my knowledge and opinions are based on what i know and from others have shared with me. i have never discounted what you are doing. my focus is just different, for all of us, to get better and hopefully find good docs. even though my clinic closed and i can post more now that i do not have to worry about dr. harvey being hurt by sceptics,it is not the end to good care. trust me. i canot post all that i know, for obvious reasons. and what new info i get it is not in yet so to speak. i still have to see what happens. by the way, i do know of one guy will look at your samples and theories most likely on the second. he is not part of mrf and does take patients without gouging folks but his theories about morgellons are radically different from whatever the mrf believes. he does help folks though, which is important he WILL look at your samples, but to the tune of 100 dollars. i do not know about your dedicated research part which is good, but you never know until you try.( the reason why do ot say yea or nay is because i am simply not qualified to do so) i have somewhere deep the info somewhere in my pms would have to dig to see. if like and interested pm, i shall look. we are all a team here, and i love all the info you share with us. so i think i have made myself more understandable i hope. however, the importance of this thread is the discussion of post lymes disease and coinfections, i really would like to discuss this topic in this thread. however, i really like the threads doing on the bryzoan. thanks, (LC).

[ladycolorado]

well folks, what is really interesting is how sick one ca get with lymes disease and co-infection. even mites can be involved. ad reports of nodules in europe on folks skin (HMMM). strange how even when the lymes babeosis is gone, one ca still stay sick. i look forward to what you think about the information i have provided, (LC).

[tcmgpt13]

So maybe add in some coconut oil in the diet and see what happens?:

http://www.alkalizeforhealth.net/Lstealthinfections.htm

Chlamydia Pneumoniae

50% of the population shows evidence of having had Chlamydia pneumoniae infection by age 20. It safe to say that nearly every adult has had this bacteria in their body. Symptoms of Chlamydia pneumoniae infection include a cough. The common respiratory bacteria Chlamydia pneumoniae may play a key role in coronary artery disease, the leading cause of death. Chlamydia pneumoniae may also play a role in Alzheimer’s disease, asthma, and arthritis. From your lungs, this bacteria has easy access to your bloodstream and the rest of your body.

Lipid-coated microorganisms such as Chlamydia pneumoniae are killed by medium chain fatty acids produced by the digestion of coconut oil. - Bruce Fife, N.D. page 68

This next lyme article discusses why antibiotic treatment may leave one feeling less than well (posted a bunch of lyme articles previously from the townsend letter for doctors and patients and am reposting this one for LC):

http://www.townsendletter.com/April2...iclyme0407.htm

best,

tcm

[ladycolorado]

i will have to look at some of the treatmets in there there is truth in what being said. i wil say i did not see what i am taking classed in them. this is why important to get the RIGHT medicine, which is a pain. cipro, i once took long ago i did not like at all. it turned me into not to be gross but twice thought to be a tiny break of wind turned out to be a squirting hershey express down my legs (ewww). i will say i was lucky taught to only take them when REALLY need them, and take them all. exception: if on long term if need a brief break, then take it. if responding poorly on certain medicines, speak up. if allergic yes can be emergency sitiuation and go into anaphyactic shock, there are risks, and i will say i am lucky been doing so well on them. many forget to take probiotics too, and that probiotics must be taken some time apart (i would say at least 3 hours) or they will negate eachother. (my tummy doing lots better was main thing for a time with adjusting to oral) i am taking some other types of meds too, one to combat chylamidia pneumonia, and sometimes a mutiple dose of antiparisitcal all at once but very sporadic. also once weekly oe antifungal pill (i can take up to 2, but know they are hard on the liver, so just the lower prescribed amount. one of my antibioitcs has been steadily cut in dosage.gee, wish had milk thistle, good for liver. i will look at treatment part and incorporate if i like it can do it (like with all of us, this disease expensive). my problem is my kids home now, i have to not fail them. considering everything,(including atural helps) i think i am doing well, it is so good to be able to think again, and like brain just flows with stuff now. but i know i cannot do this a lifetime, i do not think what is intended anyway, they did initially say 1+ yrs, but we shall see how it goes. it is very important to make wise medicine choices and i will post further in here when read more, (LC).

[Lizette45]

Lindalu,
Hi-hope you are doing well! Geez-I was disgusted by reading how much your treatments are costing you! I thought LAdy C-s were bad enough. It just stuns me with the reality that the dr's are making a killing off of us. Me-not so much as I have insurance and haven't had any drastic treament as I am trying to pace things money wise.
God Bless

[ladycolorado]

my treatmets were cheap actually compared to most docs like going to pillls, my meds around two hundred with some added meds. let's see, will be 5 antibiotics now, one antifungal, one to fight chlamydia pnemonia, and one to sleep, in my case getting 40 percent below wholesale, and since no ins, no complaints, heck of alot cheaper than open heart surgery, lol. so, no mine was not. plus, get mie delivered to my door at no cost, so my former doc was really making no money off of me. i have been quite happy getting my medicine, (LC).