HealingWell
Search Close Search
☰

Lyme in Tampa area (relatively new!)

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/14/2011 4:12 PM (GMT 0)
Hello,

I'm a 43 yr old mom of 4 and I'm new to Lyme. I thank all of you for the wonderful support and advice you've given me :)

Would love to chat with other people in Florida who have Lyme....it's so good to be able to connect and share experiences (as well as get local information) in the area. Anyone out there?g

Hope this finds everyone well. I recently did a 2nd western blot and IgG P41 showed up as well as 2 IgM bands: 23 and 41.....so that is a positive test right? Although, the docs I've seen say "overall negative".....I don't get it!

J

Posted 3/14/2011 7:30 PM (GMT 0)
Are you seeing a LLMD in Tampa for your Lyme treatment? What kind of protocol are you on and how are you doing? Hope things have gotten better for you since you first joined here.

My son and his family live in Tampa. We were just there three weeks ago visiting them and our two (soon to be three) granddaughters. We had such a wonderful time with them. Miss our granddaughters so much!

Here's a link to the Tampa yahoo support group:

http://health.groups.yahoo.com/group/Lyme_TampaBay/

Florida Lyme network group:

http://health.groups.yahoo.com/group/FL-LymeDiseaseNetwork/

Florida Lyme Advocacy Organization:

http://www.floridalymedisease.com/

Gary
Posted 3/14/2011 7:34 PM (GMT 0)
I'm not in Florida (wish I was LOL) but whatever you do, don't listen to doctors about lyme. They do not know anything about it. I have been to so many including infectious disease and neurologists who literally did not know what they were talking about. There is not much known about this disease yet and only LLMD (doctors who continue to study lyme and its coinfections) will be able to help you. I believe band 23 is specific to lyme. Although 41 is not, it is usually the first to show up with lyme. Best of health to you.
Posted 3/20/2011 11:29 PM (GMT 0)
Thanks for the replies :)
I am currently seeing a holistic lady who has me on homeopathics (I was taking Cumanda, now I am taking Samento), I've taken a month of Doxy with Diflucan and now I am taking oil of oregano. I am not seeing an LLMD because they are just too expensive, but I am seeing an infectious disease doc who is willing to run the tests I am asking for (I am in contact with a Tampa Lyme support moderator who is very knowledgeable)....

I don't know what to think....I feel somewhat better than I did, but at night I am in pain...mostly my hands and feet. I have LOTS of food sensitivites since all this started and am on a VERY strict diet. It seems like people with Lyme are much more sick than I am, and they seem to herx pretty badly...I really don't seem to herx much at all.

I also have a positive ANA which is somewhat consistent with lupus, sjogrens, and vasculitis....all auto immune....but it does not run in my family at all. I don't know WHAT is going on with me. It's very frustrating..

I now have a part time job, and many people with Lyme are amazed that I am able to work with lyme disease....does that sound odd?

I don't have fatigue, I am able to wake up rested and do housework, light exercise, shopping, etc......most of my pains start when I settle down at night. Like I said, mostly in my hands and feet. Sometimes pain in random muscles, sparatic.

Very confused!!
Posted 3/22/2011 12:10 AM (GMT 0)
The LLMD in Tampa does take many types of insurance. Or the last time I saw him 2 years ago he was still taking insurance!
Posted 3/22/2011 2:08 PM (GMT 0)
Dr C in Tampa only takes Blue Cross Blue Shield PPO plans.
Susie
Posted 3/23/2011 6:45 PM (GMT 0)
Susie

Thanks for the info, that sure has changed from when I first saw him over 5 years ago!
Posted 4/1/2011 11:09 PM (GMT 0)
Hi~!
I live in Florida too! Was on the East coast, but now closer to the West and more North. So, I'm confused as well, though I only have a prognosis and working on a diagnosis.

Well, I have a positive ANA as well. I'm curious as to what yours was. Mine was 1:80 and speckled. So, not very high at all, but positive. However, my aunt has lupus... I don't know if it could be that or not, but like you said it's relative to auto-immune.

Are you just seeing a reg doctor or clinic? I'm going to go to Shands in May, so I'll see if they're REALLY LLMD's (the director specifically).

Anyways, hope you and your family are doing well!
Posted 4/3/2011 8:40 AM (GMT 0)
Currently I am seeing Dr. C. in Tampa and he only takes BCBS and medicare, he's okay but I think I am going to have my primary care get authorization for IV antibiotics, stay on that for one month with natural medicine as I had more improvement with the natural medication w/antibiotics.

Mompi Lyme

Posted 4/3/2011 2:30 PM (GMT 0)
I see Dr C in Tampa and I am currently on IV Invanz via a picc line. At present I am also on Mepron and Ketek. (I have taken Alinia, Tindamax and Factive, he rotates the oral meds but keeps the IV constant) My husband is also on IV Invanz via peripheral and Tindamax (he is doing really well). I like Dr C, knows what he is doing and does not mess around. I have Bart/Babesia and Mycoplasma as well as Lyme.

Susie

Posted 4/3/2011 11:55 PM (GMT 0)
Hi JDiane and welcome!

What may be going on with you is an overload of toxins since toxins (the die-offs from lyme bacteria) are poisons and poisons inside the body cause all sorts of crazy symptoms not to mention pain and more pain as long as  those toxins reside in one's body and brain.  Thus I recommend starting a daily detox program (listed in the sticky thread called "New to Lyme?  Start Here!".

Since you are seeing a holistic lady I recommend that you buy this book called "Beating Lyme Disease) (this is the second edition, I became better from following the instructions in the 1st edition):

http://www.hansacenter.com/books.php

When I first heard of detoxing I thought people were nuts.. I didn't understand the connection of lyme bacteria and toxins so I ignored the advice of others..  Oh well, live and learn.. 

Hope this helps,

Denise

Posted 4/4/2011 2:04 PM (GMT 0)
SusieQ64,

I am seeing Dr. C in Tampa, also. Do you go to him for your IV meds and did St. Joseph's put in your picc line? He's since taken me off all meds but I have found a little frustration with him and his staff as he never remembers anything from the previous visist. Please provide any information in regards to your experiences as I am trying to see a natural doctor.

Lyme Mompi
Posted 4/4/2011 8:14 PM (GMT 0)
He does my IV meds and orals, he does switch around a lot with the orals but I think that is a good thing as he is trying to get rid of co-infections as well as the Lyme, also I have a very sensitive GI tract and I am prone to ulcers. I had my picc line put in at a hospital where I live, which was a nightmare. I think a lot of Dr's don't remember one patients treatment plan from another without their notes when they are seeing so many with the same condition. I go next Monday to see him and I am going to ask him to switch me to Rocephin as I can't afford the Invanz anymore, I am also going to ask for Flagyl as the tindmax/alinia are also very expensive. I am currently on Mepron/Ketek and IV Invanz. If I have any questions I always go to Sue as she is the Oracle at his office. I first went to a natural Dr in Orlando (Dr K), but he was shy of the antibiotics and would only do Rocephin 2-3 times a week and sold me a ton of expensive supplements that had no effect. My goal is to kill the infection with antibiotics and at the same time build up my immune system with Detox and supplements.
Susie
Posted 7/2/2018 8:04 PM (GMT 0)
Hi, I have Ly me disease and need a doctor who will treat with antibiotics. I see people mentioning a Dr C in Tampa Bay and I live in Wesley Chapel. Can someone give me his name or another doctor in the Tampa area? Any help is appreciated.
Posted 7/2/2018 8:28 PM (GMT 0)
Hi and welcome to our forum Jensense,

You have posted to an older post from 2011 so I'm not sure if those members will see your post and respond.


If their email is still active you could try and email the members in Tampa.

You can start a new post and ask your questions again and you should see some responses.

You may also search for a llmd at: /www.ilads.org/patient-care/provider-search/

and Lyme disease.org

We do encourage all new members to read our "New to Lyme" start here thread at the top of the page.

It has good info on symptoms, detoxing, testing and more.


I am sorry that you have Lyme, you will find caring and helpful members here, so glad you have found us.

Take care
✚ New Topic ✚ Reply