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Hi zandvoort. I am glad you are getting tested for the co-infections. Is it being done through IgeneX? Most Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This has been true in my case.

From what I understand, he treats with Biaxin and Plaquenil or Tetracycline. I don't think he prescribes Tetracycline in the summer because it can cause sun-sensitivity. It can take time to tell if meds are working.

I do not think he has changed his methods. I am not trying to bash him, I just would not recommend him.
Hi Zandvoort - So, this guy is good AND covered by insurance? Wow, sounds great. Is he accepting new patients?

I have really begun to feel like maybe I am crazy or a hypochodriac or something. I've been dealing with Lyme for over a year now, diagnosed positive by Igenex and then recently made the mistake of seeing Dr Alan Steere at MGH who basically told me what I should've known he would - that long term antibiotics won't work and that I probably have something else.

I have been on IV antibiotics for about 6 weeks now and am beginning to think I should just have the PICC line removed. My PCP probably won't go for any more time with it anyway. I developed blood clots and had to have the line moved to my other arm in the first 2 weeks. Then I had drastic reactions to the coumadin they were giving me for the clots.

I am going to see a Neurologist at MGH for "enlarged ventricles" in my brain which some people have said may also be due nto Lyme.

All I know is, I still feel like crap and tested positive through Igenex. Dr Steere claims the lab is "famous for giving positive results" but I have had several people tell me they tested negative there.

This is so discouraging. I haven't been posting here because I have actually been convincing myself that there is something else wrong, even though I am well aware of the controversy that surrounds the disease.

Can anyone offer me any words of hope? I am just beginning to want to give up and resign myself to feeling like crap.....

Thanks and God bless, Andy
Hey Andy
I have the same concerns as you. I have been on abx for 9 months. I just started Levaquin for the Bartonella I came up positive on. The doctor was trying to figure out why I wasn't feeling better and tested me for co-infections. Were you ever tested? I had a sore throat for almost 9 months right after starting the abx last November. Since starting the Levaquin 3 weeks ago the sore throat is going away. I still have major fatigue/exhaustion but am hoping the Bartonella was the problem. I only had I believe 4 postives on IgeneX but had a CD-57 of 21.
I think maybe it just takes a long time and maybe you could try a different combo of abx. I can just give you encouragement at this point since I am still in the battle myself. My sister saw Dr. Steere and didn't like him at all. Anyway, hang in there and don't give up.

Kim
Hi Andy. I am very sorry this happened. Was it Dr. M?

It is terrible enough to have these diseases, it is even worse to have to fight for the necessary care. It is a battle too many of us have to fight.

Maybe your doctor would be willing to have you tested for the co-infections through IgeneX?
[QUOTE=ticker;3146277]Hi Andy. I am very sorry this happened. Was it Dr. M?

It is terrible enough to have these diseases, it is even worse to have to fight for the necessary care. It is a battle too many of us have to fight.

Maybe your doctor would be willing to have you tested for the co-infections through IgeneX?[/QUOTE]

Hi Ticker - yes, it was Dr M. He seems to be the only LLMD around but there is one more on the north shore (of MA) that I might try.

I guess I can run the co-infections thing by my PCP - after all, it was HIS idea I do the IV abx (ironically enough). I am seeing a Neurologist at MGH in two weeks. Maybe he will find something too? I know a lot of people see Neuro's and end up with mis-diagnosis too... Who knows what will happen.

Still trying to get SSDI (something I NEVER thought I would do in my lifetime) but they don't sound too optomistic. I know the usual is for them to decline someone a few times. Hopefully it won't come to that.

Started seeing a therapist a few months back due to all the stress in life and she said she has dealt with SSDI quite a bit and wouyld help. I just want my life back and to resume being a "real human being".

You are all in my thoughts and prayers. At least we are in this together!

Take care all, Andy
[QUOTE=mctassi;3146509]Andy, I can totally relate to you. My life is falling apart. I'm like you not on SSDI yet. I don't have the money to hang on long. I live in NM but grew up in MA. No lyme docs around. I'm thniking I will have to sell my part of the house out and move back to Ma. to find a good lyme doc. Is the one in NH your talking about in Hampton? I don't know his name but if so let me know and I'll stay away from him. I'm like you. I just want some help. I want to feel better and I want my life back. This is hell on earth! mc
ps if you find a good lyme doc in Ma. please let me know.[/QUOTE]

MC - Hang in there! Yes, it is the one in Hampton. I don't know, maybe other people have had good experiences with him - I personally haven't. I started seeing him in January and saw him a about 3 times. All he suggested was Igenex testing (for Lyme) which came back positive. He never suggested testing for co-infections although he said he was pretty sure (based on my symptoms) that I had Babesiosis too. I know LLMD's are under fire and thus have to have "odd" practices but geez, you could at least TRY and help people if you pay them hundreds of dollars (out of pocket) per visit... The first visit was $425 (2 hrs) and all he did was take my "history". I could've filled out a questionnaire ahead of time and given him all that. The next visit was $210 and was less than an hour. He didn't have anything new to suggest nor did he perform any medical tests. What a waste. Too bad he was the son-in-law of some friends of my folks....

There is another Lyme Dr. up in Amesbury. I may try and go see him/her. I have been out of work since March and we are royally scr*wed financially. A lot of days I don't feel right walking, let alone driving a car. My wife is a stay at home mom because we have two little boys and there is no way I can take care of them by myself.

Good luck MC, I hope you figure out what is best for you and how to do it!!

Take care and God bless, Andy





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