My Sick in CT Story

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SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/20/2009 4:05 PM (GMT -6)   
(this is a continuation from another post) I have had Lyme for over 6 years and recently re diagnosed from the original "Depression/Fibromyalgia/CFS" I am currently on Amox 500 mg 3 times a day and Doxy 100mg twice a day. My insurance will not cover a LLMD.

I just looked back in the records and my dog died of "Ehrlichiosis". It's related to tics and lyme, he died just a couple months before I got sick. I have not been tested for co infections, in fact my doctor does not even know what co infections to test for sad Is there a list of co infections that I can bring her to test for? She is not a LLMD but she is the best MD I could find willing to treat me that takes my title 19 ins. She told me I need to see a LLMD and go on IV but my state insurance "title 19" will not cover the doctor or the IV as far as we know. Because of this I asked her if she would try long term orals because that was the only option I have left. She is doing her best, she asked ME what antibiotics I wanted to try and I told her amox and doxy so she wrote it out. She said she is willing to try a different combo if it does not work. It's been about 3 weeks and so far I have not felt any better. If anything I am starting to feel a tad worse. I am pretty far gone from where I use to be both psychically and mentally. As far as we can tell I have the later stage neurological lyme. Other then the moderate to sevear pain I also have problems ballencing and I am very clumsy. I have trouble taking my clothes off when changing because I lack strength and coordination. I am very sensitive to cold weather or any type of breeze. I often take methadone and it helps me A LOT but it does not do much for the brain fog and clumsyness. I hate taking it just because I don't like taking any pills unless I absolutely have to, never have. I am on disability and had to move in with my grandparents. I am pretty desperate for new Lyme treatments and I have tried a few alternative things that did not do much more then drain all my money. I had a limited success with Rife but could no longer get out to the dr that is 2 hours away from me due to transportation issues and the fact that the long trips were taking a toll on my health. Any suggestions on treatment options would be well appreciated. I live in CT and I am 27 years old.

Eric

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/20/2009 4:09 PM (GMT -6)   
I am glad you are being treated. If she is very open minded you need to tell her those doses are too low to knock this crap down.

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/20/2009 4:12 PM (GMT -6)   
seeingstars said...
I am glad you are being treated. If she is very open minded you need to tell her those doses are too low to knock this crap down.


Thank you. What would you suggest for a dosage?

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/20/2009 4:21 PM (GMT -6)   
I think it can have a lot to do with what you weigh. But I hear at least 400mg up 600mg doxy a day and have seen anything from 3000mg to 6000mg amox.

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/20/2009 4:33 PM (GMT -6)   
seeingstars said...
I think it can have a lot to do with what you weigh. But I hear at least 400mg up 600mg doxy a day and have seen anything from 3000mg to 6000mg amox.


thanks. I think she will do it but I would have to show her some type of reference, research or guideline other then just "I herd this was a good dosage" type deal. Before seeing her I was able to order some doxy and amox online so if I get that in soon I would be able to try it without her approval. I appreciate the input. I guess im not too bad off though, I read earlier a member on here that was only given 250mg of amox. When I first got sick I was 155lbs, I am now 190lbs. I gained a good deal of weight from the Lyme but luckily I don't look "overweight". smilewinkgrin Before I got sick I was very healthy and I use to hike in the woods 3-4 miles a day after or before work. One of the days I was out hiking I suddenly got this dreaded feeling that something is very wrong or not right. I just felt really wierd, like I was going to die or something. It was not too long after that day when I started having problems.

Post Edited (SickInCT) : 1/20/2009 3:38:46 PM (GMT-7)


Life'sRhythm
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/20/2009 4:47 PM (GMT -6)   
I'm seeing a naturopath and she seems very knowledgeable, has many Lyme patients. I guess you would call her a LLND? She started me on Minocycline, (which I have read is stronger than Doxy) and Ciprofloxacin. Those 2 plus Samento, 3 x a day, plus 1000 mg Magnesium have been giving me some pretty good herx reactions. I wouldn't say I feel better, but then, I am not thinking it's time to feel better, yet.

L J

loki3501
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 1/20/2009 5:04 PM (GMT -6)   
Look up Dr. Burrascano's guidelines online. He wrote out everything you need.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/20/2009 5:06 PM (GMT -6)   
I can't find his updated one but I'm sure he came out with an '08 but anyway you can go here to read or print a copy of Dr Burrascano's guidelines and give a copy to your GP. (Like 40 pages) You can find it at : http://www.ilads.org/burrascano_

BUT I think there is a newer one out there. Anyway this doc is with the group that knows lyme isn't treated in a month and not with low dose abx. He is very well respected by the llmds.

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/20/2009 5:52 PM (GMT -6)   
I do have Samento microbial defense from NutraMedix left over. It was part of the Cowden Lyme protocol I did. It is in a liquid droper form and it says to take up to 15 drops twice a day. Since it seems to work for you guys I am going to start taking it again!

I also have Enula, Banderol and Mora all microbial defenses.

I still have Serra Peptase and Magnesium pills.

I was on the Cowden protocol and while it did not cure my Lyme it did do something very interesting. Before I started I use to have INTENSE sugar cravings. In fact I use to have to eat stuff like cookies before I wento bed or by body would not let me sleep (how wierd is that). After a month on the Cowden protocol the sugar cravings completely vanished.

Post Edited (SickInCT) : 1/20/2009 5:05:42 PM (GMT-7)


SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/20/2009 6:17 PM (GMT -6)   
Gracie's Mom said...
Here is a link to Dr. B's guidelines (2005), so you can print them off and take them to your doc - she sounds great but the way!

http://www.ilads.org/guidelines.html

I have a copy of the Dr. B 2008 guidelines but they are in PFD. If you have your email address here on HW I will email the PFD attachment to you if you would like.

Best wishes~


Thank you!! You guys are too kind!! smilewinkgrin With this kind of support I think im gonna pull thru! wink
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