Ok getting desperate. Im in FL, have been seeing DR.C in Tampa. Im doing VERY POORLY...getting worse everyday. More pain, eyes....lots. Have not been on any ABX...since March - one month of vanco. I have tried to get some help with my gut issues to start there first so that i can assist my immune system....im losing it. How good is Dr. F in LA? I have family there and really need alot of help with this disease - all aspects. My llmd has not done alot of tests i feel would be helpful and i can no longer be my own doctor, trying to figure out what to do. Because Ive had a rough time with ABX....he just takes me off of them(he is ID doc). Thats mostly his only answer....I need some real immune support and i know my minerals are way off and he's not even addressed this. I am trying...Im just getting so desperate. Ihave some family in LA and will go there if this llmd - Dr. F can help me and is really lyme literate and understands the disease and doesnt just give up when some ABX dont work like he wants. he never even said" lets try backing off your dose or what else is going on here". If anyone can help me or just to talk would be great. Im 813-367-7828. especially if u can offer about this llmd or one closer to florida that really good. I feel like im dying truly.
[ 06. June 2007, 07:48 PM: Message edited by: amberlin96 ]
Posted by nan (Member # 63) on :
It certainly sounds like you haven't had much help. I am quite sure there are other Lyme doctors in FL and one in Mobile, Alabama.
I would suggest you go to the Seeking A Doctor and post a question for a doctor in Florida or ask if anyone has had luck with the one in Mobile. Since we don't mention doctors' names, you will get a response via Private Message.
Also...check out Support Groups and find one in FL and see if you can contact someone who can direct you. Some of this info may be outdated but if you call or email a contact, it may lead you to some help.
Both the forums I mentioned are on the top left side of the page.
If you do those things you may find someone closer to you. Sure hope so...although you feel like you're dying, I assure you we have all been there and know exactly how you feel! But you do need help soon!
Wishing you the best and hope you will stay in touch and let us know how you make out! Posted by amberlin96 (Member # 11535) on :
up
Posted by Dave6002 (Member # 9064) on :
I agree that healing starts from the gut, esp for Lyme.
Gut plays a very important role in the immune system. It protect us from pathogens and provides us the nutrition we need to build up the immune system.
With a leaking gut, every bad stuffs like yeast and bacteria can enter your system easily.
Healing from Lyme is like a long run competing with the Bbs.
We need to continuously strengthen our immune system to weaken Bbs (some say to give Bb a burden like 30lb).
So eventually, you'll become stronger, the Bb become weaker.
Finally you will win the race.
Start healing from the gut.
From my experience, it's infection cause gut problem (pains), so I have been using garlic juice for a while to clean the infections from the gut and I gained back my weight...
and I am getting better with time.
Lyme is a chronic infection and so far we don't have effective abx to clean the infections immediately.
We need our immune system to fight the bacteria consistently 24/7.
With a good immune system and proper treatment, everybody can get better or even cured.
Posted by skigal (Member # 7443) on :
What about Dr J.S. in Naples & Tampa? His kids were treated by Dr J (CT). He has a book out about Babs. SG
Posted by liz28 (Member # 4946) on :
It's not clear which symptoms you have.
If you have Lyme, this is not advice, I'm not a medical doctor, but doxycycline is a commonly prescribed acne medication. People take 200mg/day for months. It may not be the perfect Lyme cure, but it will slow your symptoms down if you have Lyme.
Three side effects: you must take it right after meals, you don't take it at the same time as dairy products, and you have to wear good sunblock, because it increases your skin's sensitivity.
If you have babesia symptoms, you can take artemisinin to temporarily lower your fever. Nutricology has a devoted following, and it costs $20 a bottle at www.vitacost.com
Jarrow makes a good brand of theanine, the relaxing agent in green tea. It can help lower the anxiety. Not perfectly, but at least enough to help you assess your situation. The calmer you are around doctors, the more they budge.
Posted by groovy2 (Member # 6304) on :
Hi Amber
I sent you PM --
also you can get Most medicine you need in Mexico--no script required -much cheaper than in US-- same exact meds--
May need passport to go to mexico tho -Jay--
Posted by NCLymie (Member # 6689) on :
What do you mean by saying taking Docy will at least slow down the Lyme? I've been told that when you are on antibiotics, it brings out the bb and that's what causes the herx. So, it doesn't slow things down, it actually reves things up.
I would never full around taking any medication especially at the levels that are higher than for acne. Antibiotics are drugs, just like any others, and we should be careful not to give out medical information = as none of us are doctors.
I know you're trying to help, but it seems that everyone on this site is an expert, and I would rather have a licensed expert give me advice.
I've been given every advice under the sun, and only follow what my LLMD says to do.
Posted by TerryK (Member # 8552) on :
amberlin96, I'm sorry you are doing so poorly. Are you sure that your doctor is an LLMD? Is he a member of ILADS?
Perhaps the reason you've had a rough time with abx is because you are unable to deal with the biotoxins that are caused by die-off of bacteria. That is what happened to me even though I was on actos/cholestyramine to help remove the toxins.
About 25% of the population is a genetic type that makes it harder for them to get rid of biotoxins. They need something to help carry the toxins out of the body. My LLMD is treating me appropriately to allow my body to get rid of toxins. One also must deal with metals that are released when the bugs die according to reading and what I've been told.
Were you tested or treated for any co-infections? You will get better results with an ILADS LLMD in my opinion. Go to the seeking doctors section and get an ILADS LLMD.
NCLymie wrote:
quote: I've been told that when you are on antibiotics, it brings out the bb and that's what causes the herx. So, it doesn't slow things down, it actually reves things up.
That is incorrect. The herx reaction is caused by biotoxins - die off of bacteria. If anything abx drives Borrelia into cyst form (a dormant form of Borrelia) and you need cyst busting abx to help deal with that.
quote:I know you're trying to help, but it seems that everyone on this site is an expert, and I would rather have a licensed expert give me advice.
Good point and something everyone here needs to remember. We are not doctors and those who take advice from this forum do so at their own risk. Best for each person to be as educated about their illness as possible.
That said, I'm not a doctor and neither are most people here but many of us are experts. We've had to be, because most doctors are not. Those of us who are lucky enough to have an LLMD have somewhere to go to ask questions and get reasonable answers however there are many here who aren't so lucky and I'm just glad that we have so many experts here who can help.
As I've said before, educate yourself and don't believe everything you read here or anywhere for that matter. Do your own research. Use common sense and if you have a good LLMD, rely on them.
Terry
Posted by Lymetoo (Member # 743) on :
The dr in Louisiana is very good! I think you would like him. Forget the one in Alabama!!
I have ph numbers for other drs in FL, but someone there told me none of them are any good.
I'll PM you.
Posted by 1Bitten2XShy (Member # 12280) on :
I see Dr C in Tampa, and while I adore him as a person, sometimes I have to Prod him into treatment. Such as for my Babs, which I tested positive for. He is GREAT as far as putting you on IV if you need it..no problems there. He just took me off all abx's since at my last visit he found the yeast beast and gave me some meds for that (that I am doing horrible on).
Have you really tried talking with him? I have found him most attentive and willing to listen, and have never found him to be offended when I have suggested a treatment.
He has really tried pushing me for the IV Rocephen, I am the one draggin my feet. I said we need to deal with the Babs first. Although he had me only on the Mepron/Biaxin for 3 weeks, then the yeast came into play.
PM me if you would like to talk further.
Posted by Lymetoo (Member # 743) on :
1Bitten....are you on the anti-yeast diet?? Taking acidophilus??? You might also ask Dr C about putting you on Nystatin long term.
It is very benign and does not affect your liver.
Posted by mrsdizzy (Member # 11690) on :
This is only my opinion so no one please get upset by this. I would NOT see any other Dr in Florida besides Dr. C. If you have the money and are able to go out of state do so.
I'm sorry that you're sick like this. I would try and talk to him. I have not had a problem and I hope I do not. I will be flying out of state if something arises.
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