What would you do?

Hi Everyone,

So I am stuck. I have now been to 6 docs. I have seen an Internal Doc who at least tested me for lymes. My ELSA was positive and I had one band show on the Western Blot they ran. I don't know however which number. He agreed to put me on antibiotics for two weeks. Doxy-100 mg twice a day. Well I figured in the mean time I could find another doc who might know more. Well that hasn't happened. I've been searching online for anyone in Utah who has Lymes trying to see if I can find out any info about a good doctor. Unfortunately I've had no luck.

So would you go back to the Dr who at least put me on the antibiotics and pray and see if he would continue them for another 4-6 weeks? Or do I try and find a naturopathic Dr. What are your thoughts. I really don't know what to do and hate to keep wasting my time and money. I want to get better. Just thought I would see if anyone has been in the same boat and what you did. I am totally open to natural remedies also. Since I have been off the antibiotics my nervous system symptoms have subsided but I figure they will return.

Also, once you have the symptoms such as tingling, numbness, being lightheaded how long do you think you've had lymes? Is this something I've had for quite sometime and is now finally manifesting? Sorry for all of the questions but I don't know where else to ask.

Hi Klynne,

I'm not sure if I posted information to you yet regarding finding an LLMD, so if I did, I apologize for posting this again. You truly need to find a Lyme Literate Medical Doctor(LLMD), otherwise, you will not get the right treatment and you won't be treated long enough. Two weeks of Doxy at 200mg a day is not enough. Please read what I posted below on antibiotic dosing.

Dosage

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.

Please also read this website and get yourself educated about this disease.

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html


Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Ticker at:
[email protected]

If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The
ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/

For great info and links, please read the topic at the top of the first page of this forum titled, "New To Lyme?......Start Here!" It will help you get started learning about lyme.

Yeah, listen to the post above, I also was put on 200mg Doxycycline a day for 2 weeks and it did not help at all, have been sick all December, from the 31st I am on 400 mg and this week was the first week in a long time I feel normal. I am taking this now for 2 weeks and have another 3 weeks to go, a total of 5 weeks. I have a lyme doc appointment mid feb, could not get one earlier, but convinced my GP to give me the right medication.
Good luck and I hope you feel better, but you are not alone!

The Dr. C that I go to is not bad or greedy and has always explained EVERY option to me. The last LD seminar he went to introduced data stating Doxy will send the spirochetes into cyst form.
I was only ripped off by 2 doctors, both Natueropathic/MD's working out of Orlando.... I spent more time money and energy pursuing that route than any other only to wind up 30+ lbs. overweight and with a chronically irritated (now gone) gallbladder. The last I heard from them was a bogus billing of $105.00 for something I never even received.

Post Edited By Moderator (CajunGrl) : 1/22/2010 11:17:54 PM (GMT-7)

I would like to caution EVERYONE not to decide on their own how much doxy (or any other abx) to take on a daily basis.

Most LLMD's suggest 300 - 400 mg per day, broke up into 2 doses (I think!).

The best thing to do is to go to the sticky "New to Lyme? Start here". There are tips for those who are taking Doxy, besides a ton of other good info!!!! Or at least use the search feature to be able to get the most info quickly.

Okay, that is enough about downing a doctor. We are here for support. Just because one persons experience was bad, does not mean that the next persons experience will be. I see Dr. C. and he is a VERY kind and caring person. He DOES NOT make you do anything that you don't want to do. If a person doesn't agree with his protocol, he is more than willing to do something different. He is NOT a greedy doctor and I've never overpaid for anything.

I will not tolerate this nonsense on this board. Take it to email.

4. No posts that attack, insult, "flame", defame, or abuse members or non-members.   Respect other members of the community and don’t belittle, make fun off, or insult another member or non-member.  Decisions about health and well-being are highly personal, individual choices.  "Flaming" and insults, however, will not be tolerated. Agree to disagree. This applies to both the forums and chat.

agmaar can you email me your seattle doc

bucci

CajunGrl said...
Okay, that is enough about downing a doctor. We are here for support. Just because one persons experience was bad, does not mean that the next persons experience will be. I see Dr. C. and he is a VERY kind and caring person. He DOES NOT make you do anything that you don't want to do. If a person doesn't agree with his protocol, he is more than willing to do something different. He is NOT a greedy doctor and I've never overpaid for anything.

I will not tolerate this nonsense on this board. Take it to email.
.

Being honest about an experience doesn't not require 'bashing'. If you had a bad experience, or personalities clashed & feels the need to 'warn' someone else - that's something that belongs in a p.m.

CajunGrl said...
Thanks Traveler.

Saying that someone was "greedy" and "rude" is going beyond posting about a bad experience. Continuing to attack and insult someone in every post is way uncalled for. I don't care what doctor it is, it will not be tolerated here.

I will continue to delete any argumentive posts. If it continues, Admin will be notified. I already posted the rules here and they should be followed.

Why pm? Why not be open and honest? Why is that "bashing"? Because your experience was different than mine or others? My goodness, people discuss some of the most private issues openly, but we are discouraged from talking openly about someone we are to trust with our life (and our money). Explain the logic in that.

CajunGrl

Apparently you have taken offense to what I posted (and another member)- which was in honesty. It was not just my own experience with this doctor but another's. You should not have deleted my posts because you disagreed with what I posted. You are a moderator and although entitiled to your opinion, I and other members are entitled to ours.

It seems "unfair" for you to post your feelings, but  other's not be allowed to post their's with out censorship or removal. Shame on you! I broke no rules in my post, nor did the other poster. If asked, I will state my experience again. And I will continue to state my position on "things". We all learn from one another-whether we agree with them or not.

Getting back to the subject. . . . kylnne, I hope you will find the closest LLMD to treat you as it will save you time, money and possibly your life. You need a doctor that is experienced in successfully treating lyme and all the coinfections. Even if you got the right amount of doxy for an extended length of time, you would probably find out down the road that you are also infected with something else like bartonella or babesia. This is a very complicated disease to diagnose and treat because the borrelia bacteria that causes what is commonly referred to as Lyme (not lymes) disease take many forms and has to be attacked simultaneously with several antibiotics. The reason doxy is used first is because it also kills another common coinfection.

Where did you get bitten? I was bitten in Montana by a wood tick, which was thought until recently not to carry lyme. There is no test that can identify this strain yet so I had to be diagnosed by symptoms rather than tests. Thank goodness I had the EM rash. There are many LLMD's that diagnose and treat according to symptoms. There are some doctors that require test results to confirm the diseases and this often results in people becoming deathly sick before they satisfy the test requirements. The earlier and more complete your treatment is begun the more likely you will have a full recovery. So don't waste time visiting doctors that have no knowledge of what you are fighting. I would also advise you not to mess around with herbal treatments until you have done antibiotics because these bacteria are kissing cousins to such horrible pathogens as malaria and syphilis. Save herbs for when you infection is under control.

You can contact ILADS for recommendation. Then ask about the Dr on the forum using the initial of his last name and location. You can request to be PM'd so that if a person has had a negative experience they can inform you privately. What bothered them may not concern you at all.

I just found out there is an LLMD in Montana that gives both abx and herbal, and am elated as I went all the way to Seattle last year. I have treated myself much of the time which is no fun either especially when your brain is so foggy you can't remember anything. Good luck.

Cajungrl  you said,

"He DOES NOT make you do anything that you don't want to do. If a person doesn't agree with his protocol, he is more than willing to do something different. " 

That was not my personal experience, when I tried to ask his IV nurse about oral abx she barked at me "Dr. C. already told you what he thinks"  it was not open for discussion.   What he told me when I saw him was the only thing that can cure Lyme is IV Rocephin.