posted
I finished my IV Rocephin a week ago and had my follow up Dr's visit with my ID Dr...I told him I still was experiencing symptoms (though not AS severe as before treatment) But that I still had numbness in my throat and tongue, fatigue was back, back pain had gone away during treatment but had now returned (to which he told me was NOT a symptom of LD and that I should go see a Rhumatologist because I could have Fibromyalgia...hello! NO i have LYME DISEASE! but thats another story, another rant) So anway I tell him how i'm doing and he goes his little exam of my hands knees, ankles. he sits down looks at me and tells me the story of how the IDSA and the CDC say theres no such thing as Chronic Lyme and that my symptoms are caused by something else and theres no need for any continued treatment. He said that my symptoms will continue to get better and within a couple months of being off the treatment I should be back to normal.....
I don't believe that. But now I'm reading about the controversy and they say that all my symptoms are psychosomatic and my insurance wont cover any more treatment.
How are you all dealing with this controversy? It feels like I've been punched in the stomach.
(I do have an appointment with an LLMD but I couldn't get in until July...so basically I'm left to sit for 2 months with my fingers crossed nothing major happens)
Posts: 11 | From Midwest | Registered: Apr 2010
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julielynne4
Unregistered
posted
I am sorry you have had to experience this very frustrating situation. I like your analogy about feeling like you were punched in the stomach - that's right on.
It is awesome that you have an appt with an LLMD in a couple of months. In the meantime, there are things you can do, supplements that are must-haves, and it will be here in no time. There are more knowledgeable people on here who will most likely be able to give you more information on specific supplements, etc. I would say to make sure you are taking a good probiotic, Vitamin C, and maybe something like Cat's Claw.
When I was in the position that you are in right now, I had to go through a grieving process because of all of the years I was ill and in pain, with no diagnosis and little to no help. I also experienced a lot of anger toward all of the doctors who had prevented me from finding the real cause of my illness. A combination of ignorance and idiocy is what we are up against when it comes to mainstream doctors.
It is wonderful that you have the knowledge that you have, and that you will not settle for the opinion of your ID doctor. He is completely uneducated and ignorant, and it is unfortunate.
I have had doctors tell me I don't have lyme, that I shouldn't become one of those "Lyme-crazed" people, that I don't need antibiotics, that there must be something "else" going on, that I might be stressed out, depressed, etc. etc...
My friend was accused of planting the ideas of sickness in her daughter's mind, her daughter who is very very sick with lyme and coinfections.
Keep reading, keep informed, it's so important that more and more people learn the truth about lyme. JL
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sometimes you can find a lesser lyme doc or a lyme-friendly doc who can see you fairly quickly and will put you on some more meds.
So sorry this happened to you. Those of us who have been here for some time already know not to go to ID docs because this is what will happen.
Similar thing happened to me when I got my positive lyme test from LabCorp. My internist would only give me 30 days of doxy. When my exact same symptoms came back at the end of the 30 days, he still wouldn't give me any more. I was really suffering.
A lyme support group gave me the name of a doc who saw me in 2 weeks. He gave me meds until I got in with a lyme doc.
So, call the support groups in your area (see left side of page) and see if you can find such a person to continue treating you until July.
Congratulations! You just EXPERIENCED the lyme disease WAR (or controversy) personally. You now have your lymie stripes!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just don't go back to idiot doctors. It's sad, yes. It's a kick in the stomach, yes. But just avoid the abuse and ignorance. Just say "NO" - don't pay for incompetence and willful neglect that is actually also actual abuse.
Stay strong in your spirit and character. Stay strong in your knowing who you are.
Are there any ILADS-educated NDs near you (ND=naturopathic doctor). Some are Lyme Literate and ILADS members.
While you wait for your LLMD, call their office and see if they suggest any particular article, book or supplements. There is still much you can do on your own in the meantime.
Ask first about Olive Leaf extract, Curcumin, etc.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but your LLMD can evaluate you and then guide you in testing when you see him. One of the top labs is:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
$35 for the DVD and worth every penny as it helps to explain so much about the political problems - and shows that long-term treatment works.
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In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
Unfortunately, you are not alone. This story is repeated everyday. I would keep calling the llmd office. Perhaps, they have a cancelation. You make get lucky. Good luck.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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