New to Lyme Question HELP!

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New Member

Date Joined Dec 2008
Total Posts : 5
   Posted 12/12/2008 6:36 PM (GMT -6)   
I have sore feet, pains in my hands, ankles and ribs, shooting pains, twitching muscles, insomina, floaters, trouble thinking, constipation, stabbing pains in my calves sometimes, ringing ear and occasional migranes. There are a few more symptoms, but these are the main ones.
I started to become sick in July of 2008. Initially I had a 103 fever, shaking chills, massive headaches so bad I couldn't move or think, and sheets of sweat. Had the rash and positive bloodwork and they put me on three weeks of antibiotics. I  still had headaches so my doctor, after asking if I were neurotic, sent me for a spinal tap that came out negative.  I then had electric shock like feelings in my body and a buzzing in my ear and she sent me to an infectious disease doctor, who told me to ignore it and that the problems would go away, so I did. A month later the joint pains started.
I went to another infectious disease doctor and got the immunological response response again, but he did put me on 1000mg of amoxicillin. The amoxicillin didn't do anything.
I was getting sicker and I found a doctor who treated Lyme on Long Island were I live, DR. R. in Wading River. He gave me 100mg of doxy twice a day.
He tested me for co-infections, I don't know what lab, but they came back negative.
I was still getting sick.
My uncle's doctor put me in the hospital. They did another spinal tap and found something slightly abnormal, so they put me on rocepherin 2 grams a day for 28 days. While I was in the Hospital my uncle's doctor had an infectious disease doctor come see me since he didn't know alot about Lyme. This ass asked if I spent too much time on the internet, told me if I think of a pain it can become real, and said Lyme usually has the knee involved.
The rocepherin really helped. They had to change the picc line because I had a clot, but it got rid of alot of my joint pain, except strangely my ankles. I begged them to keep the therapy up, but my doctor got nervous and told me to deal with the infectious disease doctor.
I was wise enough by then to know not to trust one of those pricks again. I read cure unknown and started to try to find an LLMD.
I called Dr. P in connecticut and he had a 3 month wait. I called a Dr. L and Dr. R in New York, but they both wanted $1,500 for an initial visit.
I am already in debt from missing so much work, so I kept looking.
I found Dr. C in Mount Kisco. He was only $500 for the first visit.
I brought some of my tests from the various doctors and he gave me two perscriptions. One for 250mg of Zithromax once per day for a month and one for 500 mg of Ceftin twice a day for a month.
I have a friend whose sister was cured by Burrascano and she told me to read his stuff. Too darn bad he isn't praticing there anymore! So anyway after reading his stuff I doubled up on the dose and took 500mg of Zithro for 2 weeks and then 500 mg of Ceftin 4 times a day. I think the zithro worked better, but now after two weeks of Ceftin I don't feel so hot.
I went back to Dr. C in Mount Kisco. I told him I think due to my initial symptoms I thought I have babesia and due to my later symptoms I think I also have Bartonella.
I mentioned that Burrascano says to treat bart first. He gave me a prescription for Mepron and 250 mg of Zithromax. I would have rather tried to go for the bart, but I can't write my own prescriptions.  I also should have asked him to actually check for co-infections with Igenex, but I didn't think of it at the time.
Weintraub said he was conservative and doctors weren't giving the full monty since they are worried about reprecussions, so I am wondering if I am wasting my time and money with him, even though i can't afford anyone else near me.
It such a surreal world where you can't trust anyone when you are chronically ill. I appreciate that they are sticking their neck out, but am I getting the best treatment? Can you get the best treatment being broke and in debt? Luckily I work at a job were I can get away with little thought and activity with insurance, but supporting a family of 4 leaves little left, especially in these times.
I am wondering if I should demand Levaquin and a co-infection test the next time I see him. I am wondering if his prescriptions will be way too weak.
Thank god the insurance picked up the Mepron, at least for the first time. I don't know what is going to happen. I knew nothing of this disease at first and now that I know it feels like I'm trapped in some weird Medical Novel about a ludicrous conspiracy that never could happen in reality.
No one understands. My wife just doesn't get it. My Co-workers don't get it and realize I'm hanging on by a thread! This has totally ruined my life. There is no joy in my life anymore. If I didn't have a family and 1 year old daughter I'd hang myself. I don't know how you guys did this for the long haul. It is utter hell. I can't even sleep. It is torture every single second of your life. I don't know if I can do years or a lifetime of this. I was a good person, I didn't derserve this, no one does!
What should I do? Is doctor C. in Mount Kisco really a good doctor and he's just starting to investigate?

Regular Member

Date Joined Apr 2008
Total Posts : 266
   Posted 12/12/2008 7:46 PM (GMT -6)   
Wow loki3501-

you sound like you've been thru the ringer like most of us. I'm sorry you are having a terrible time but keep hope. I wish I could give you some doc names but I live in the midwest. So many of us have been to hell and are coming back. You will too. You'll get to enjoy many birthdays for the 1 year old and your other kids.

The one thing you learn with this disease is patience. I was very impatient and wanted things done right away before this long battle. But too, you always have to be your own advocate which takes so much energy from us ill patients. So, take things day by day and make sure you find one thing to enjoy each day. It will get better.

I totally believe you are dealing with coinfections. I don't believe I have babs but the bart is a huge prob for me. It is getting better now that I am on doxy 200 2x a day, biaxin 500 2x a day, and hydroxychloroquin 200 2x a day. Before this I had great lyme treatment. To name a few: monocycline 2 months, IV rocephin 3months, iv claforan 1month, ceftin . Even after this I had little improvement. I even was getting worse in some areas. Oh yeah, I even spent 3months on zithro and mepron and kept getting worse. I had a supposed lyme literate infectious disease doc hear my whole story about how I couldn't go but a few days of abx or I get really bad. (Not something lyme does, it's slower) He tested me for 2 out of the many strands of bart and they came back neg. So did the one test for babs. So he told me my ills all came down to lyme. Very irresponsible if you ask me. Anyway, my reg doc told me he too believed I was dealin with a mix of crap from the tick and he has finally found me a combo that's cutting this crap.

As far as $ issues with finding a doc that will work with you til the end I've already told you I can't be any help with that. Others on here would be tho. What I will tell you tho, is there is at least one person on here that got fed up with his doc and decided instead of giving him the $ to not listen to him, he'd spend the $ on the abx he knew he needed from reputable overseas drug companies that you don't need a prescript for. This can be risky if you buy from some companies but this can put you in the driver's seat rather than depending on docs that are wasting your time and $. Don't feel helpless. This is an option. Not for everyone. But we all deserve options.

New Member

Date Joined Dec 2008
Total Posts : 1
   Posted 12/13/2008 12:16 AM (GMT -6)   
Hello Loki3501, I may try to help you to treat chronic LD.  I do it with the use of Oriental medicine and homeopathy.
First time I've treated LD patient about 8-9 years ago with very good results. I was doing some search on LD and found your post, so I decided to respond. Also, I am local, I have office in Westchester county. 
The treatment protocol is not that expensive as that doctor from Mt.Kisco.  Herbal formula costs about 30-35$ and will be enough for about 15 days, homeopathic remedy is 20$ and lasts for about a month, the appointment is 60$.  However, treatment may take about 6-8 months.By my  LD protocol, person has to come at the beginning once a week (or more if there is a need to come)  for acupuncture and also to get the formula. Than, patient comes to get formula. The additional appointments are made to address some issues that come across the treatment.
I am a licenced acupuncturist and certified in Chinese Herbs.
You may contact me through internet
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