posted
Hello- I feel like I am in a race against time to find a Lyme Literate doctor for my husband! My husband was hiking and then found a tick with blood meal 4 days later. He did have a rash at the site although it was not as distinct as the pictures I see of a bulls eye. Sent him to first appointment at the PCP and he saw a PA who looked on CDC website and prescribed one dose of Doxy. Further research on my part revealed that there is evidence that that may not hinder the development of Lyme anyway. Well, 3 to 4 weeks later he became ill with a severe headache, eye pressure pain, joint pain, fatigue, body aches, night sweats, chills, temp 99. He is never sick and never takes medicine yet was requiring Motrin to function at all. It lasted terribly for 4 days and tapered off. We were hopefully it was viral but still very nervous. He went back to doctor though and they sent him for a blood test for lyme and did no further work to determine what was in fact ailing him if it were not for this tick bite. Needless to say, he had a decent good week and now this illness has continued to surface varying in intensity or last 2 weeks. The Lyme test came back neg. With my research I believe that I learned it may have been too early for a test to be positive OR the test has a very high incidence of false neg. It is so frustrating ans such a shame that its nearly impossible to get treated for clinical picture of Lyme early! We contacted PCP again asking to please start treatment for Lyme because the life long complications of what we have reason to believe is Lyme from a clinical stand point....out weighs the risk of taking an antibiotic. I want to also note that my husband has NEVER taken antibiotics in the 12 years I have been with him so we are not ones to go that route unless serious concern. Clearly, I am over using a physician office in which they do not have Lyme and other tick born illness expertise because we are simply wasting our time. If it isn't Lyme than help us figure it out. I found out finding a Lyme Literate doctor isn't as simple as doing a basic search on google. I am seeking assistance to get my husband the care he deserves so that this can be treated appropriately before more time elapses from tick bite. Any information on tick born illness, how to talk to doctors, what to look for, what tests are needed, etc would be extremely helpful. Most importantly, a referral to a Lyme Literate physician is the main goal for me contacting you. We live in Middletown, Delaware. We have Cigna insurance although this is so important in our eyes that I would go 'out of network'.
Posts: 1 | From Delaware | Registered: Jul 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up this post so that everyone can read it:
Hello- I feel like I am in a race against time to find a Lyme Literate doctor for my husband! My husband was hiking and then found a tick with blood meal 4 days later.
He did have a rash at the site although it was not as distinct as the pictures I see of a bulls eye.
Sent him to first appointment at the PCP and he saw a PA who looked on CDC website and prescribed one dose of Doxy. Further research on my part revealed that there is evidence that that may not hinder the development of Lyme anyway.
Well, 3 to 4 weeks later he became ill with a severe headache, eye pressure pain, joint pain, fatigue, body aches, night sweats, chills, temp 99. He is never sick and never takes medicine yet was requiring Motrin to function at all.
It lasted terribly for 4 days and tapered off. We were hopefully it was viral but still very nervous. He went back to doctor though and they sent him for a blood test for lyme and did no further work to determine what was in fact ailing him if it were not for this tick bite.
Needless to say, he had a decent good week and now this illness has continued to surface varying in intensity or last 2 weeks. The Lyme test came back neg. With my research I believe that I learned it may have been too early for a test to be positive OR the test has a very high incidence of false neg.
It is so frustrating ans such a shame that its nearly impossible to get treated for clinical picture of Lyme early!
We contacted PCP again asking to please start treatment for Lyme because the life long complications of what we have reason to believe is Lyme from a clinical stand point....out weighs the risk of taking an antibiotic.
I want to also note that my husband has NEVER taken antibiotics in the 12 years I have been with him so we are not ones to go that route unless serious concern.
Clearly, I am over using a physician office in which they do not have Lyme and other tick born illness expertise because we are simply wasting our time.
If it isn't Lyme than help us figure it out. I found out finding a Lyme Literate doctor isn't as simple as doing a basic search on google. I am seeking assistance to get my husband the care he deserves so that this can be treated appropriately before more time elapses from tick bite.
Any information on tick born illness, how to talk to doctors, what to look for, what tests are needed, etc would be extremely helpful.
Most importantly, a referral to a Lyme Literate physician is the main goal for me contacting you.
We live in Middletown, Delaware. We have Cigna insurance although this is so important in our eyes that I would go 'out of network'.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, Wonder. I am so glad you found this site. Already, you know a good deal about lyme disease. Good for you.
I will immediately send you the name of the doc I recommend. Don't be shocked by the price or the fact that he is right outside of Washington, D.C. This is what you have to do to get good lyme treatment.
I totally agree with you that this has to be taken very seriously as the odds are that this IS lyme disease.
The doc I recommend can see your hubby right away. That is because he saves a few slots each week for cases like this--a person just bitten who needs immediate care.
Most good lyme specialists have a 3 to 6 month waiting list, so they could not help you at the stage you are in right now.
You will not have to travel to D.C. very often--just once every 3 months. You will do telephone appointments in between.
It is not unusual at all for lyme patients to go out of state for their care. About half have to do this, and many have to fly. Not all states have lyme doctors. And, good lyme doctors are very few and far between.
I call a doc a good lyme doc if he is able to cure people of this disease. Few know enough to cure folks.
Since your hubby just got the bite, his chances of beating this are good IF he now gets great treatment and obeys everything the doctor says to do.
Welcome to LymeNet! We will help you here all we can. I am sending the name privately, plus lots of info for you.
Some quotes for you from the Burrascano Lyme Treatment Guidelines:
"After a tick bite, serologic tests (ELISA. IFA, western blots, etc.) are not expected to become positive until several weeks have passed. Therefore, if EM is present, treatment must begin immediately, and one should not wait for results of Borrelia tests. You should not miss the chance to treat early disease, for this is when the success rate is the highest. Indeed, many knowledgeable clinicians will not even order a Borrelia test in this circumstance." (p. 7)
"GENERAL PRINCIPLES
In general, you can think of LB as having three categories: acute, early disseminated, and chronic. The sooner treatment is begun after the start of the infection, the higher the success rate. However, since it is easiest to cure early disease, this category of LB must be taken VERY seriously. Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word. So, while the bulk of this document focuses of the more problematic chronic patient, strong emphasis is also placed on earlier stages of this illness where closest attention and care must be made." (page 3)
Your husband needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. He needs to go where they are. I don't know of any in DE.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
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